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26 July 2010
Caring Together The Carers Strategy for Scotland2010 - 2015
26 July 2010
Caring Together The Carers Strategy for Scotland2010 - 2015
ii pp.i-iv
© Crown copyright 2010
ISBN: 978-0-7559-9713-8
The Scottish Government St Andrew’s House Edinburgh EH1 3DG
Produced for the Scottish Government by APS Group ScotlandDPPAS10110 (10/10)
Published by the Scottish Government, October, 2010
This document is also available on the Scottish Governments website: www.scotland.gov.uk
w w w . s c o t l a n d . g o v . u k
All photographs courtesy of the Princess Royal Trust for Carers. Photographs include two taken at Pollok Young Carers Storytelling project, 2010 and one of Amna & Avais.
Further copies of the Executive Summary are available, on request, in alternative formats. Please contact 0131 244 4040.
iii Caring Together
CONTENTSForeword 1-2
GuidetoDesignFeaturesinStrategy 3
Executive Summary 4-14
Chapter1 Action Points and Implementation 13
Chapter2 Introduction 15-30
Chapter3 Profile of Carers 31-35
Chapter4 Prioritising Support to Carers 36-38
Chapter5 EqualitiesEqualityGroupsCaringinRemoteandRuralAreas
39-43
Chapter6 Carers Rights 44-47
Chapter7Carer Involvement in Planning, Shaping and Delivery of Services and Support
48-51
Chapter8 Identification of Carers 52-56
Chapter9 Carers Assessments (Carer Support Plans) 57-60
Chapter10 Range and type of Support 61-65
Chapter11 Information and Advice 66-69
Chapter12 Carer Health and Wellbeing 70-75
Chapter13 Short Breaks 76-82
Chapter14TrainingCarer TrainingWorkforce Training
83–87
Chapter15 Housing and Housing Support 88–91
Chapter16Use of Assistive TechnologyTelecareEquipmentandAdaptations
92–96
Chapter17 Advocacy Support 97–99
Chapter18 Employment and Skills 100–102
Chapter19 Tackling Poverty: Financial Inclusion 103-106
Appendices
Appendix1Appendix2Appendix3Appendix4Appendix5
Appendix6
Appendix7
Appendix8Appendix9
Appendix10Appendix11
Carers Strategy Steering GroupCarers Reference GroupAction Points (consolidated list)ResourcesCare 21 Recommendations and Progress Since 2006Number of Carers by Local Authority AreaRural Transport – Scottish Government PoliciesPathway DiagramFuel Poverty – Energy Assistance PackageGlossary of Terms and DefinitionsReferences
107108109-118119120-131
132
133-135
136137
139-142143-148
iv pp.i-iv
1 Caring Together
ForewordTheScottishGovernmentandCOSLAaredeterminedtoensurethatcarersare
supportedtomanagetheircaringresponsibilitieswithconfidenceandingood
health,andtohavealifeoftheirownoutsideofcaring.
Wearepleasedtohaveworkedtogetherwitharangeofinterests,includingHealth
Boards,thenationalcarerorganisationsandcarersindevelopingthisstrategy.It
willbuildonthesupportalreadyinplaceandtakeforwardtherecommendationsof
thelandmarkreport,Care 21: The Future of Unpaid Care in Scotland.
WerecognisecarersasequalpartnersinthedeliveryofcareinScotlandandfully
acknowledgecarers’expertise,knowledgeandthequalityofcaretheygive.With
appropriatesupport,especiallysupportdeliveredearlytopreventcrisis,caringneed
nothaveanadverseimpactoncarers.
Caring Togethersetsout10keyactionstoimprovesupporttocarersoverthenextfive
years.Thefocusisonimprovedidentificationofcarers,assessment,informationand
advice,healthandwellbeing,carersupport,participationandpartnership.
Insupportofthisagenda,theScottishGovernmentispleasedtoannouncean
investmentofafurther£1millionin2010-11tovoluntarysectororganisationsto
providemoreinnovativeshortbreaksprovisioninScotland.
Thestrategysitswithinawidercontextandreformagenda,withcarersattheheart
ofthisagenda.Inordertoachievelastingchangebothforcarersandthepeople
theycarefor,weneedtodriveforwardarangeofpolicydevelopments,suchas
actiontotacklehealthinequalitiesandhouseholdincome.Weneedtodomoreto
shiftresourcesfrominstitutionalcaretocareathome,includingsupportforcarers.
TheReshapingCareforOlderPeopleStrategicDeliveryPlan,whichisinpreparation,
willarticulatetheextentoftheshiftinresourceswithinthesystem.
WearealsopleasedtohaveproducedGetting it Right for Young Carers,whichwe
believewillresultinbetteroutcomesforyoungcarers.Tothebestofourknowledge,
itisthefirstevernationalyoungcarers’strategyinEurope.
Werecognisethatmanyyoungpeoplecanbenefitfromprovidingcaretoarelative
orfriendaffectedbyillness,disabilityorsubstancemisuse.However,weare
committedtoensuringthatyoungcarersarerelievedofinappropriatecaringroles
andaresupportedtobechildrenandyoungpeoplefirstandforemost.
2 pp.1-12
Wearetakingimportantstepstoimproveyoungcareridentificationandsupport
withinschools,collegesandthehealthservice.Thestrategyalsoendorsesan
approachwhichorganisesservicesaroundthechildoryoungpersonsothatallthe
needsofthechildoryoungpersonwillbeidentifiedandaddressed,includingthe
impactofcaringontheirhealth,wellbeingandeducation.
Insupportofthisagenda,theScottishGovernmentispleasedtoannouncefunding
of£150,000forafourthYoungCarersFestivalin2011.Thiswillbringtogether
youngcarersfromalloverScotlandtosocialise,haveabreakfromcaringandlet
themmeetotheryoungcarers.Youngcarerswillbeabletotellnationalandlocal
decision-makerswhatdifferencethisstrategyismaking(ornot)totheirlivesone
yearonfrompublication.
ThereisanimportantpointrelevanttobothCaring TogetherandGetting it Right
for Young Carers.TheScottishGovernmentgaveHealthBoards£9millionforCarer
InformationStrategiesinthelastthreeyears,with£5millionofthisallocatedthis
year.UntiltheSpendingReviewisconcluded,theScottishGovernmentcannot
confirmtheresourceof£5millionfromApril2011onwards.However,weseethis
asapriorityforthatreview.Also,completionofsomeoftheotheractionsinthis
strategywilldependontheoutcomeofthereview.
WebelievethatCaringTogetherandGetting it Right for Young Carers representan
importantstepforwardincreatingaframeworkforaction.Together,andthrough
implementationofthisstrategyoverthenextfiveyears,wewillimprovethelivesof
carersandyoungcarers.
ShonaRobison,MSPMinister for Public Health and Sport
AdamIngram,MSPMinister for Children and Early YearsCouncillor
DouglasYatesCOSLA Spokesperson forHealth and Wellbeing
CouncillorIsabelHuttonCOSLA Spokesperson for Education, Children and Young People
3 Caring Together
This is a brief guide to the design features within this strategy:
ACTION POINTS
“Quotes from carers to illustrate points made.”
References to good practice – examples of good practice (and carers’ stories) are set out in separate document accompanying this strategy.
Points for emphasis, including useful information which does not form an Action Point because the action is already underway and is not new.
Young carers – reference to young carers within the carers part of the strategy.
Thetextornarrative.
4 pp.1-12
EXECUTIVE SUMMARYHeadline MessageCarersareequalpartnersintheplanninganddeliveryofcareandsupport.There
isastrongcasebasedonhumanrights,economic,efficiencyandqualityofcare
groundsforsupportingcarers.WithoutthevaluablecontributionofScotland’s
carers,thehealthandsocialcaresystemwouldnotbesustained.Activityshould
focusonidentifying,assessingandsupportingcarersinapersonalisedand
outcome-focusedwayandonaconsistentanduniformbasis.
The Government’s Headline ActionsThefollowingaretheheadlineactionsinthisstrategytohelpimproveoutcomesfor
carers:
1. Weacknowledgetheimmensecontributioncarersmaketosocietyand
theneedforappropriatesupport.We will develop a Carers Rights Charter,
consolidatingexistinglegalrightsandsettingoutkeyprinciplesforcarersupport
bothnowandinthefuture.
2. We will put in place measures to help professionals in the health and social care workforce identify carers.Careridentificationopensthedoortoa
carer’sassessmentandtotheprovisionofsupport.Therewillbeastrongemphasis
onworkforcetrainingasmembersoftheworkforcewhoare
‘carer-aware’haveabigroletoplay.
3. We will take steps to improve the uptake and quality of carers assessments/carer support plans.Thiswillbeachievedthroughworkforcetraining
andwidely-disseminatedguidanceaswellasbyinclusionoftheroleofassessments
intheforthcomingNHSinformcarersinformationzone.Carerscentreswillcontinue
theirvitalworkinsupportingthisprocess.
4. We will improve the provision of information and advice to carersthrough
variousmeansincludingworkforcetrainingandoursupportforNHSinform.
5. We will ensure carer representation on Community Health Partnerships. Carerswillbecentraltotheplanning,shapinganddeliveryofservicesforthe
peoplewithcareneedsandinrelationtosupportforthemselves.
5 Caring Together
6. Ascarerscansufferpoorhealthdirectlyasaresultofcaring,carerhealth
andwellbeingisvitallyimportant.We will produce a bespoke resource on issues relating to stress and caringtocomplementthesuccessfulSteps for Stress.We will continue to work with the Royal College of General Practitioners Scotland and the national carer organisations on carer identification and support,including
promotinggoodhealth.We will ensure that carers aged 40-64 have access to health checksunderplanstotargetgroupsofpeople,includingcarers,whomay
notliveinthemostdeprivedareas–thoseeligiblepeopleinthemostdeprived
areaswillalreadyhaveaccesstohealthchecksundertheKeepWellinitiative.
7. Carertrainingpromotescarerconfidenceandenablescarerstocarefor
longer.We will invest £281,000 in carer (and workforce) training this year through a grant to the national carer organisations.Wewillworkwith
NHSBoardstoensurea‘trainingoffer’maybemadetocarersingreatestneed,
contingentontheoutcomeofthenextSpendingReview.
8. Theprovisionofshortbreaksorrespiteishugelyimportanttocarers.We
willworkwitharangeofpartnerstopromotethefurtherdevelopmentofflexible,
personalisedshortbreaks.Localauthoritieswillcontinuetoprovide,andsupport
accessto,shortbreaks.We will invest a further £1 million in 2010-11 to provide more innovative short breaks provision in Scotland to be delivered by the voluntary sector.
9. Itisimportantforcarerstobeabletoremaininemployment,whenthey
wantto,ortotakeupemployment,learningortrainingopportunities.We will encourage and promote carer-friendly employment practices.SkillsDevelopment
Scotlandwillbeworkingwiththenationalcarerorganisationstohelppromote
learningandothercareeropportunities.
10.Thereisaclearneedforbetterstrategicplanningandcollaborativeworking
betweenhealthandsocialcareservicestoensurethedeliveryofco-ordinated
servicesandsupports.We will work to ensure this happens so that carers do not have to negotiate the boundaries of different health and care services.
Appendix 1setsoutthemembershipoftheCarersStrategySteeringGroupwhich
helpedinformstrategydevelopment.Appendix 2setsoutthemembershipofthe
CarersReferenceGroup,comprisingcarersfromdifferentpartsofScotlandandwith
differentcaringexperiences,whichalsohelpedinformstrategydevelopment.
6 pp.1-12
Chapter 1: Action Points and ImplementationChapter 1setsoutthearrangementsforimplementationofthisstrategy.The
consolidatedlistofActionPointsisatAppendix 3.
Chapter 2: IntroductionChapter 2setsoutthesharedvisionforunpaidcarers(carers)inScotlandwhere
carersarerecognisedandvaluedasequalpartnersincare;supportedtomanage
theircaringresponsibilities;fullyengagedintheplanninganddevelopmentof
services;andnotdisadvantagedordiscriminatedagainstbyvirtueofcaring.Weset
outanumberofkeyoutcomeslinkedtothevision.
Carersplayacrucialroleinthedeliveryofthehealthandsocialcaresystemin
Scotland.Thisrolewillbecomemoreimportantasaresultofdemographicand
socialchanges.Carersneedtobeattheheartofareformedhealthandsocialcare
systemwithashiftfromresidential,institutionalandcrisiscaretocommunitycare,
earlyinterventionandpreventativecare.Wemakeclearthatinmakingradical
changestothehealthandsocialcaresystem,carersshouldnotbeburdened,but
supportedandsustainedintheircaringrole.
Wesetouttheeconomicandefficiencyargumentsforsupportingcarers,whilst
recognisingthefundamentalhumanrightsandequalitiesperspective.Wemake
clearthatmuch more needs to be done to achieve practical support on a consistent and uniform basis and in a way which enables carers to have a quality life of their own outside of their caring responsibilities.
Appendix 4setsoutresourcescommittedbytheScottishGovernmenttodate
forsupporttocarers.Thereisafocusonthechallengingeconomicclimate.There
isalsoaclearstatementthatdespitetheextremepressuresonpublicfinances,
local authorities and Health Boards will commit to delivering incremental improvements to support for carers. This recognises that the demand on current statutory health and social care provision is unsustainable without changes in the pattern of service delivery.
ThischaptersetsouttheroleoftheScottishGovernment,COSLA,localauthorities,
HealthBoards,thenationalcarerorganisationsandotherpartnersindeliveringthe
strategy.
Wemakeclearthattherewillbeabaselinepositionagainstwhichtomeasure
progressoverthenext5years.
7 Caring Together
Weoutlineourcommitmenttopublish,atthesametimeasthisstrategy,good
practicetoshowtheinnovationoflocalauthorities,HealthBoards,theThirdSector
andprivatesector.Wearealsopublishingaselectionof‘carerstories’toshowthe
widerangeofcaringexperiences,bothpositiveandnegative.
WehighlighttheimportanceoftheCare21Report,whichcontained
22recommendationsinrelationtocarersandyoungcarers.Wesetoutprogress
sincethepublicationofCare21inAppendix 5.
Chapter 3: Profile of CarersChapter 3 summarisesarangeofdataonthecharacteristicsofcarers,including
age,gender,hoursspentcaringeachweek,whetherworkingornot,and
socio-economicbackground.Appendix 6setsoutthenumberofidentifiedcarersby
localauthorityarea.
WediscussthedifficultiesofcollectingdataonBlackandMinorityEthnic(BME)
carersandstatetheactioninhandtomakeprogressonthisfront.Wediscussthe
diversityofboththecarerandcared-forpopulation.We make clear that support for carers needs to take account of the dynamics of the caring situation and to be tailored accordingly. Weacknowledgethattherearegroupsofcarersweknow
littleabout,suchascarerswithdisabilities,gypsytravellersandrefugeesandthat
weshouldaddressthislackofknowledge.
Chapter 4: Prioritising Support to CarersChapter 4focusesontheneedforstatutoryandThirdSectororganisationsto
prioritisesupporttocarersingreatestneed,accordingtolocalpartnerships’own
definitionsofneed,basedonneedsassessmentwork.Somecaringsituationswillbe
morechallengingthanothersbutwherecaringresponsibilitiesareminimal,plans
shouldbeputinplacetoprepareforanyescalationinthedemandsonthecarer.
Anemphasisonpreventativeactionandearlyinterventionshouldbethedefault
positionratherthancrises-ledresponseswhichhappenafteranescalationofthe
problemsandissues.Smallpackagesofcost-effectivesupportdeliveredinatimely
wayareappropriate.
8 pp.1-12
Chapter 5: Equalities - Equality Groups - Caring in remote and rural areasInadditiontothemanyreferencestoequalitiesissuesthroughoutthestrategy,
Chapter 5focusesontheneedtofullyrecogniseandimplementinameaningful
way,andtofurthermainstream,equalitiesissues.Carersshouldnotbe
discriminatedagainstonthegroundsofage,ethnicity,gender,disability,sexual
orientationorreligion.Therefore,effortsneedtobemadetoidentifyandsupport
carerswhocansometimesbe‘hard-to-reach.’
Thischapterbuildsonthereferencesthroughoutthestrategytotheparticular
needsofcarersinremoteandruralareas,includingaccessibilityofservicesforthe
cared-forperson,thelackofeasy-to-reachrespiteprovision,theadditionalcostsof
caringinremoteandruralareas,difficultiesindeliveringcarertrainingandsoon.
WesetoutinAppendix 7thefullrangeofScottishGovernmentpoliciesdesigned
toimprovetransportationinremoteandruralareas.Wewillworkwithkeypartners
toidentifyinnovativesolutionstohelpaddresssomeoftheissues.
Chapter 6: Carers RightsChapter 6makesclearourintentiontodevelopaCarersRightsCharterwhichwill
consolidateinoneplaceexistingcarersrightsandsetoutkeyprinciplesforthe
future.SubjecttoaSelf-DirectedSupportBillbeingintroducedintoParliament,
andreceivingRoyalAssent,therewillbeafurtherlegalrightforcarerstoreceive
directpaymentsifvariouscriteriaaremet.WewillpromotetheEqualityAct2010.
WemakeclearthatthedeliveryofalltheActionPointsinthestrategyshoulddrive
forwardsupportforcarersoverthenext5years,andbeyond.
Chapter 7: Carer Involvement in Planning, Shaping and Delivering Services and SupportChapter 7makesclearthatservicesandsupportwillonlybeplannedanddelivered
effectivelyandefficientlyifcarerorganisationsandcarersarefullyinvolvedatall
stages.Sincecarerscomprehensivelyoutnumberthepaidworkforce,theyshould
haveacentralroleinplanning,shapinganddeliveringservicesandsupport.
TheScottishGovernmentwillensurecarerrepresentationonCommunityHealth
Partnerships(CHPs).ThereviewofPublicPartnershipForumswillinvolvecarer
representatives.TheHealthcareQualityStrategyforScotlandisalsoensuringcarer
involvementinimportantissuesregardingthequalityofhealthcareservices.There
shouldalsobecarerinvolvementinprocurementprocesses.
9 Caring Together
Chapter 8: Identification of CarersChapter 8 setsoutthemosteffectivewaystoidentifycarersandstressesthe
pivotalroleofpractitionersinthehealthandsocialcareprofessions,whoare
trainedincarers’issues.Carerself-identificationisalsoimportant.Identification
isthefirststeptohavingacarer’sassessmentandaccessingsupport–enabling
carerstobeidentifiedortoself-identifyisthereforecritical.Tothisend,wewill
continuetoworkwiththeRoyalCollegeofGeneralPractitionersScotlandand
thenationalcarerorganisations.NHSBoardsneedtocontinuetosupportcarer
identificationbeyond2011,whencurrentCarerInformationStrategyfunding
comestoanend.WewillworkwithAlcoholandDrugsPartnerships(ADPs)andthe
newScottishDrugsRecoveryConsortium(SDRC)tohelpidentifyandsupportcarers
ofpeoplewithaddictionsandsubstancemisuseproblems.Appendix 8 setsouta
carerpathwayfromidentificationthroughtosupport.
Chapter 9: Carers Assessments (Carer Support Plans)Chapter 9 setsouttherangeofactionstohelpimprovetheuptakeofcarers
assessments/carersupportplans,toenhancethequalityoftheassessmentsbeing
undertakenandtoprovidemoreandbettersupportfollowinganassessment.
TherewillbefurtherworktoensurethattheTalking Pointsapproachtothe
undertakingofassessmentsispursuedrigorously.Thereisanemphasisonthe
needforpractitionerstobefullytrainedinthecarryingoutofassessmentsand
toacquireknowledgeaboutservicesandsupportavailablelocally.Withtheright
focus,theassessmentshouldleadtocarersbeingsignpostedtoappropriate
support.Assessmentsmustberevisitedandreviewedtotakeaccountofchanging
circumstancesandmusttakeaccountofthewiderneedsofcarers.
Chapter 10: Types of SupportChapter 10isalinkchaptertothefollowingchapters,whichsetoutactionto
improvetheplanninganddeliveryofdifferenttypesofsupport.
Chapter 11: Information and AdviceChapter 11setsouttheimportanceofcarershavingaccesstoup-to-date,good
qualityinformationandadvicewhenevertheyneedit.TheCarersInformationZone,
tobelaunchedlaterbyNHSinform,willprovideusefulinformationandadvice
on-line.Informationandadvicewillalsocontinuetobeprovidedbycarerscentres,
HealthBoards,GPpractices,localauthorities,condition-specificorganisationsand
byothers.WewillscopethepotentialforaScotland-widecarershelpline,andthe
optionsforprovidingit.
10 pp.1-12
Chapter 12: Carer Health and WellbeingChapter 12focusesonthemental,emotionalandphysicalhealthofcarers.Early
identificationofcarersandtheprovisionofsupportisthekeytocarerhealthand
wellbeing.Carerscentresplayamajorroleinimprovingcarers’overallhealthand
wellbeing,asdootherorganisations.Wewillcommissionabespokeresourcefor
carers,buildingonCarersScotland’shealthguideforcarerstocomplementSteps
for Stress.WewantNHSBoards,CHPsandlocalauthoritiestoensurecarershave
accesstotrainingonmovingandhandling.Healthcheckswillbeprovidedto
eligiblecarers.Wewillpromotetocarersthehealthbenefitsoftheseasonalflu
vaccine.
Chapter 13: Short Breaks (Respite)Chapter 13 emphasisestheimportanceofprovidingflexible,personalisedshort
breaksprovisiontocarers.Innovativesolutionsarerequiredtohelpmeetdemand.
Suchsolutionscanfocuson,forexample,theuseofvolunteerstogivecarersa
break,buildingcommunitycapacity,ensuringmoreflexibleuseofandaccessto
universalprovisionsuchasplayschemesforchildrenwithdisabilities,morebeds
beingavailableincarehomesforrespiteinsuitablecircumstancesandincreasing
theuseofdirectpaymentstopurchasepersonalisedrespite.Wewillinvest
£1millionin2010-11toprovidecarerswithshortbreaks.
Chapter 14: Training - Carer training - Workforce trainingChapter 14 makesclearthatcarerswhoreceivetraining,iftheyneedit,feelbetter
supportedintheircaringrole,andmoreconfident.Whilstthereisagreatdealof
carertrainingbeingundertakenbyHealthBoards,nationalcarerorganisations,
localauthoritiesandothers,thisneedstobeconsolidatedandcarriedforward.The
granttheScottishGovernmenthasgiventotheNCOsin2010-11of£281,000will
beusedtoexpandcarer(andworkforce)training.TheNCOswillbuildonthegood
practiceintrainingpilotstheScottishGovernmentalsofunded–inLothian,with
BMEcommunitiesandinruralareas.NHSBoardsshouldcontinuetodelivercarer
training.SubjecttotheoutcomeoftheSpendingReview,wewillworkwith
NHSBoardssothattheymaymakeanofferoftrainingtocarersingreatestneed.
Workforcetrainingincarerawarenessandcarersupportisessential.A
well-informed,knowledgeable,trainedandskilledhealthandsocialcareworkforce
canhelpimprovethelivesofcarers.NHSEducationforScotland(NES),withNHS
BoardsandtheNCOs,willbuildoncurrentworkandidentifytrainingmaterials
11 Caring Together
tobeusedwithincoreinduction,educationandtrainingcurricula.NESwill
communicatetotherelevantregulatory,professionalandnationalbodiesthe
crucialimportanceofworkforcetraining.WewillworkwithNHSBoardstoensure
workforcetrainingiscarriedforward.WewillalsoworkwiththeScottishSocial
ServicesCouncil.
Chapter 15: Housing and Housing SupportChapter 15 acknowledgesthathousingisanimportantelementinenablingcarers
tosupportthepersontheycarefortoliveindependently,ifpossible,safelyand
withdignityintheirownhomesandcommunities.Housingmustbesuitablefor
changingneeds.UndertheReshapingCareprogramme,fivemainoutcomeshave
beenidentifiedforolderpeople’shousing.Weneedtodevelopmoreeffectivelinks
betweenhousing,socialcareandhealthpolicies,withcarerinvolvement,andwill
worktowardsachievingthis.
Chapter 16: Use of Assistive Technology - Telecare - Equipment and AdaptationsChapter 16 coversbothtelecareandequipmentandadaptations.Muchhasbeen
achievedoverthelastfewyearstoensuretheavailabilityoftelecarewhichbenefits
carerssignificantly,deliveringgoodoutcomes.Wewanttomaximisetheimpactof
telecareinvestmenttoensurethatthebenefitsandapplicationofnewtechnology
forcarerscontinuesanddevelops.
Werecognisethebenefitsofsuitableequipmentandtheneedforadaptations
tobecarriedoutefficientlyandwhenrequired.Thereisaneedtobuildonthe
existingworktoensurethatcarershaveappropriateinformationonequipmentand
adaptationsservicesandthattheyreceivetrainingontheuseofequipment.
Chapter 17: Advocacy SupportChapter 17 setsoutthebenefitsofadvocacysupporttocarers,especiallythose
whoarethemostvulnerable.Thereareonlythreecareradvocacyorganisationsin
Scotland.Giventhisscarcityofprovision,andtheoutcomesthatcanbeachieved
throughadvocacy,weurgelocalauthorities,NHSBoardsandotherlocalpartnersto
developorexpandcareradvocacyservicesforthoseingreatestneed.
Chapter 18: Employment and SkillsChapter 18 isclearthatpeopleshouldnothavetogiveupworktocareandshould
notfinddifficultyaccessingwork.Carersshouldbesupportedinemployment
12 pp.1-12
throughcarer-friendlypoliciesandpractices.Workprovidescarerswithasense
ofnormality,alifeoutsideofcaringandisthekeytoaddressingcarerpoverty,
includingmaintainingpensionrights.Withchangingdemographics,manycarers
whowanttoworkshouldbehelpedtodoso,astherewillbeashrinking
working-agepopulation.Wewillencourageandpromotecarer-friendlyemployment
practicesandSkillsDevelopmentScotlandwillhelpcarersintotrainingand
employment.Carersshouldalsobesupportedtoenjoylifelonglearning
opportunitiestoimprovetheirownwellbeing.
Chapter 19: Tackling Poverty: Financial InclusionChapter 19focuses onthefinancialconsequencesofcaring,thelowtake-upof
benefitsbycarersandserviceusers,fuelpovertyandlocalauthoritycharging
policiesforservicesandsupport.Appendix 9setsoutthefuelpovertyenergy
assistancepackage.
Increasingly,CommunityPlanningPartnershipsareenhancingmainstreamservices
whichaddressincomemaximisation,debtadviceandfinancialcapability.Carers
centres,nationalcarersorganisationsandothersprovideadviceonbenefitsand
incomemaximisation.WherevoluntaryservicesarelocatedinGPpracticesto
adviseandsupportcarers,therehasbeenatake-upinbenefitsbycarers.
WewillpursuewiththenewUKGovernmenttheleveloftheCarer’sAllowance
andareviewoffinancialsupporttocarers.COSLAalsoprovidesguidancetolocal
authoritiesonchargingpoliciesandisdevelopingabenchmarkingfacilityto
facilitateconsistentapproachesinthisregard.
Chapter5Carers’Rights
Chapter1ActionPointsandImplementation
14 Chapter1 pp.13-14
1.1 TheScottishGovernmentandCOSLAintendtoensurethattheActionPoints
inthisstrategyaretakenforwardandwillkeepthestrategyunderreviewtobeable
torespondquicklytonewpolicy,fiscalandresourcedevelopments.Wewillformally
reviewthisfive-yearstrategybyAugust2013.Wewillscopeoutthenatureofthis
reviewlater.
1.2 TheconsolidatedlistofActionPointsissetoutinAppendix 3.Adetailed
ImplementationPlanwillbefurtherdevelopedoverthecomingmonths.
1.3 TheScottishGovernmentintendstoestablishanImplementationand
MonitoringGroupcomprisingarangeofstakeholderstooverseeimplementationof
thestrategy.ThisGroupwillreporttotheScottishGovernmentandCOSLAHealth
andCommunityCareDeliveryGroup.Therewillbeafurtherlineofaccountability
totheMinisterialStrategicGrouponHealthandCommunityCare.Therewillbe
different(butlinked)arrangementsinrelationtoimplementationoftheyoung
carerspartofthestrategyassetoutinthatpart.
ACTION POINT 1.1The Scottish Government, with COSLA, will keep this strategy under review. An Implementation and Monitoring Group will report annually on progress, with the first report being undertaken by August 2011. A formal review will be concluded by August 2013. As part of the review the Scottish Government, with COSLA, and informed by the views of stakeholders, including carers, will decide whether new or revised Actions would be appropriate.
Chapter5Carers’RightsChapter2Introduction
16 Chapter2 pp.15-30
2. INTRODUCTION
Terminology2.1 Arangeoftermsisusedtodescribeapersonwhocaresforanotherincluding:
‘unpaidcarer,’‘carer,’‘familycarer’and‘informalcarer.’Allpartnersinvolvedinthe
developmentofthisstrategyprefertousetheterm‘unpaidcarer’or‘carer.’Inthis
strategyweabbreviate‘unpaidcarer’to‘carer,’asdomanyorganisationsandcarers
themselves.Itisimportantthatcarersarenotconfusedwithpaidworkers,whoare
sometimesincorrectlycalledcarerstoo:paidworkersarecareworkers.
2.2 Equally,carersarenotvolunteers.Theremaywellbevolunteerssupporting
thecared-forpersonand/orthecarer,buttheyarenotthecarer.
What carers do2.3 Carersprovidecaretofamilymembers,otherrelatives,partners,friendsand
neighboursofanyageaffectedbyphysicalormentalillness(oftenlong-term),
disability,frailtyorsubstancemisuse.Sometimesthecared-forpersonwillhave
morethanonecondition.Somecarerscareintensivelyorarelife-longcarers.Others
careforshorterperiods.Thecarerdoesnotneedtobelivingwiththecared-for
persontobeacarer.Anybodycanbecomeacareratanytime,sometimesformore
thanoneperson.Carersarenow,andwillremain,fundamentaltostrongfamilies
andpartnershipsandtoresilientandcohesivecommunities.The lives of carers and the cared-for are closely intertwined, but they are not the same.
Who this strategy is for2.4 Thisstrategywillbeofinteresttothosewhocanimprovethelivesofcarers,
inpartnershipwithcarers,andwhocaninfluencethesupportprovidedtocarers.It
isfordecision-makers,managersandpractitioners,especiallyinlocalauthorities,
HealthBoards,theNHS,CommunityPlanningPartnerships,CommunityHealth
Partnershipsandinallstatutoryagenciesinvolvedinsupportingcarers.
2.5 ThestrategywillinteresttheNationalandLocalCarerOrganisations,
condition-specificorganisationsandothersintheThirdSector.
17 Carers Rights
2.6 Thosewhosupportmainlyyoung carerswillbeinterestedinCaring
Together.Althoughthereareimportantdistinctionstobedrawnbetweenyoung
carersandcarers,therearesimilaritiesinthecaringexperiences.Therearealso
importanttransitionissues,especiallywithregardtosupportforolder young carers
aged over 18.
2.7 ThestrategywillalsobeofinteresttounpaidcarersinScotland.Wedo
notneedtochangecarers’heartsandmindsbecausetheyareacutelyawareof
whatcaringmeans.However,wedoneedtochangehowservicesandsupportare
plannedanddeliveredandtakeforwardactionwhichwillbenefitcarersnowandin
thefuture.Thisstrategy,togetherwithotherpolicies,willseektoachievethis.
“I am actually quite proud to be a carer. It’s not something I would have
chosen to do but my philosophy has always been, if you are going to do
something, do it well.”
Paul,whoisacarerforhiswifewithMSandforhisdaughterwithcerebralpalsy.
Vision into Action2.8 Toadvancethisstrategyandtobuildonandimprovesupporttocarers,itis
necessarytoarticulateaclearvisionofthefutureforcarers.
2.9 Manycarerssaythatitisaprivilegetocareforaloved-oneandthatcaring
bringsrewardsandagreatdealofsatisfaction.However,beingacarermeans
thataloved-one,friendorneighbourisillorfrailorhasadisabilityorasubstance
misuseproblem.Thiscanhaveasignificantimpactoncarers’lives.Sometimes
carerslookafterfamilymembersandothersinverydifficultandchallenging
circumstances,andbecausetheyfeelobligedratherthanbecauseitiswhatthey
wanttodo.StatutoryandThirdSectoragenciesprovidingservicestothecared-for
personshouldneverassumethatpeoplewantorchoosetobecarersandshould
alsonotmakeassumptionsaboutthetimecommitmentpeoplehaveforcaring.
2.10 Carers,whatevertheircircumstances,shouldenjoythesameopportunities
inlifeasotherpeoplewithoutcaringresponsibilitiesandshouldbeabletoachieve
theirfullpotentialascitizens.
18 Chapter2 pp.15-30
2.11 Oursharedvisionisasocietyinwhich:
• carers are recognised and valued as equal partners in care; • carers are supported and empowered to manage their caring
responsibilities with confidence and in good health and to have a life of their own outside of caring;
• carers are fully engaged as participants in the planning and development of their own personalised, high-quality, flexible support and are not shoe-horned into unsuitable support. The same principle applies to carers’ involvement in the services provided to the people they care for; and
• carers are not disadvantaged, or discriminated against, by virtue of being a carer.
2.12 Thevisionisunderpinnedbythemutualhealthandsocialcareapproach.
InitsbroadestsensethismeansaninclusiveScottishsocietyinwhichcarersare
reaffirmedaspartnersandarenotpassiverecipientsofhealth,careandother
supportservices.Theknowledgeandskillsofcarersneedtobeharnessedtomake
decisionsabouttheshapeandstructureofservices.
Outcomes2.13 Thisstrategywillseektoachieveandsustainanumberofkeyoutcomes.
Carers will:
• have improved emotional and physical wellbeing; • have increased confidence in managing the caring role; • have the ability to combine caring responsibilities with work, social,
leisure and learning opportunities and retain a life outside of caring; • not experience disadvantage or discrimination, including financial
hardship, as a result of caring; and • be involved in planning and shaping the services required for the service
user and the support for themselves.
2.14 Theparticularneedsofcertaingroupsofcarers,forexample,carerswhoare
older,BlackandMinorityEthnic(BME)orLesbian,Gay,BisexualandTransgender
(LGBT),andcarerswithdisabilities,willberecognisedandsupported.
2.15 Goodoutcomesforcarersaredependentonanumberofotherfactors
including,crucially,theprovision of good quality services for the person they are caring for.
19 Carers Rights
2.16 ThecareroutcomesabovearedirectlylinkedtotheGovernment’sNational
Outcomes,inparticular:
• we live longer, healthier lives; • we realise our full economic potential and more and better employment
opportunities for our people; • we have tackled the significant inequalities in Scottish society; and • our public services are high quality, continually improving, efficient and
responsive to local people’s needs.
2.17 Keydriversforchangeincludetacklinghealthinequalities,improving
people’smentalhealth,maximisinghouseholdincomeandpromotingemployment
andlifelonglearningopportunities.
Key role of carers: now2.18 Carersplayacrucialroleinthedeliveryofhealthandsocialcareprovision
inScotland.Theidentified657,3001carersinScotland–1in8ofthepopulation-
areanessentialpartoftheworkforce,initsbroadestsense,contributingsavingsto
healthandsocialcareservicesinScotlandofanestimated£7.68billion2everyyear.
“We are a good thing, a fundamental building block of society, and through our
efforts we save the public purse billions of pounds.”
Paul,whoalsoprovidedthefirstquote.
2.19 Carers,asequalpartnersinthedeliveryofcare,enablepeoplewith
illnessesordisabilitiestoremainathomeandintheirowncommunitiessafely,
independentlyandwithdignity.Carerscan,forexample,preventavoidablehospital
admissionsandcontributetopeople’soverallhealthandwellbeing.
Key role of carers: future2.20 Carers’roleandcontributionwillbecriticalinthefutureduetodemographic
andsocialchanges:
• Scotland’s65+populationisprojectedtoriseby21%between2006and
2016andby62%by2031;and
• forthe85+agegroup,a38%riseisprojectedby2016andby2031the
increaseisaprojected144%.
1 http://www.scotland.gov.uk/Topics/Statistics/16002/SurveyDetails2 http://www.sociology.leeds.ac.uk/assets/files/research/circle/valuing-carers.pdf
20 Chapter2 pp.15-30
2.21 By2031therewillbelargernumbersofveryoldpeopleanda
proportionatelysmaller,youngerworkingandtax-payingpopulation.Thisisa
successstoryintermsofhealthandwellbeing,butitcarrieshugeimplicationsfor
thefutureofcareinScotland.Therewillbeanadditional25%demandforhealth
andsocialcareservicesby2031.
2.22 Therewillbemorepeoplelivingalone–anestimated400,000by2031.
Moreolderpeoplewillalsobelivinginremoteandruralareas.
2.23 Olderpeopleprovidefarmorecarethantheyreceiveandareamajor
strengthandresource,contributingmuchtosociety.Withtheageingpopulation,
thenumberofcarersisexpectedtogrowtoanestimated1million3by2037.Three
outoffivepeopleinScotlandwillbecomecarersatsomepointintheirlives.Some
oldercarersmayrequiremoresupportintheirownright.Society as a whole will become even more dependent on carers’ vital contribution to health and social care delivery. Carers are at the heart of the solution.
2.24 Shiftingthebalanceofcarefromresidentialandinstitutionalsettingsto
careathomeandmorepeoplebeingcaredforathomeforlongerhasimplications
forcarers.Carerswillplayanincreasinglyimportantroleinthesupport,careand
treatmentofpeoplewithlong-termand/ormultipleconditions,disabilities,illnesses,
includingdementia,andalcoholanddrugdependency.However, this greater role must not place additional burdens on carers or prevent them from working, learning or having a life outside of caring.
2.25 TheagestructureoftheestablishedBMEcommunitiesismarkedlydifferent
tothewhitepopulation,withamuchyoungerageprofile.However,thiswillchange
withinthenext10yearsasthenumberofBMEolderpeopleincreases.Thisshiftin
theageprofilepresentsanopportunitytoprovidesuitablytailoredandproactive
supporttoBMEcarers.
2.26 Thereareotherchanges,forexample,‘delayedmotherhood’wherean
increaseinbirthstowomenaged40andovermightmeanmoreyoungerpeople
caringforelderlyparentsinfutureyears.
3 CarersUK
21 Carers Rights
2.27 Therearealsomorechildrenwithcomplexandexceptionalneedsbeing
caredforathomebyparentcarers.Thisisdue,inpart,topopulationincreasesbut
alsotomedicaladvancesandtoincreaseddiagnosisandreporting.InScotland
thereareapproximately70,000disabledchildrenundertheageof16.4Forthefirst
time,thereisagenerationofpeoplewithlearningdisabilitiesandcomplexneeds
whoareoutlivingtheirparents.
2.28 Thereisarelativelynewmigrantpopulation,includingasylumseekers.
Updatedfiguresonthenewmigrantpopulationwillbeprovidedinthe2011
Census.ManycarerswhohaverecentlysettledinScotlanddonotgenerallyaccess
supportfortheircaringrole.Identifyingthesecarersandprovidingsupportis
important.
The case for action2.29 Overthelastfewyears,muchhasbeenachievedintakingforwardthe
carers’agendaatapolicylevelbothnationallyandlocally.Therehasalsobeenreal
progressinprovidingpracticalsupporttocarers.However,policydevelopmentshave
notalwaysresultedinrealimprovementsincarersupport,leading-sometimes-to
abreakdownintrustbetweencarersanddecision-makersandserviceplanners.This
strategyisthereforebeingpublishedwithahighexpectationofchange.
Much more needs to be done to achieve practical support on a consistent and uniform basis.
2.30 Providingsupporttocarersmakeseconomic sensebysavingresourcesinthe
longerterm.Withappropriateandtimelysupportcarersareabletocareforlonger,
andenjoybetterhealthandimprovedwellbeing.Carersdonotusually‘down
tools,’butunsupportedtheycanexperiencerealhardshipfinancially,physically
andemotionally.Itismuchmorelikelythatacared-forpersonwillbeadmittedto
hospitalandthecarer’sownhealthdeteriorateifthecarerisunsupported.Carers
caneasilyreachcrisispointwithout appropriate and timely intervention.Such
interventionscan:
• maintain carers’ capacity, reducing the need for paid service delivery to the cared-for person; and
• help keep carers healthy, reducing their own need for support from the health and the social care system.
4 ExtrapolatedfromUKfigureofanestimated700,000children,FamilyResourceSurvey,ONS
22 Chapter2 pp.15-30
2.31 Localpartnershipsbetweenhealthandsocialcare,withcarerinvolvement,
candrive change at local level.Somechangesrequiredcouldbeachievedby
improvements to existing services and supports,ratherthanrequiringthe
developmentofnewinterventions.Forinstance,well-plannedhospitaldischargecan
resultinefficiency savings.
2.32 Ifhospitaldischargeiswell-plannedandtherightservicesputinplacethen
thereisamuchgreaterlikelihoodofthecared-forpersonremainingathomewith
carersupport.Thismeansidentifyingthecareratanearlystagewhenthepersonis
admittedtohospitalandensuringthatthecarerispartofthecareanddischarge
plan.
2.33 Althoughcarersshouldreceivesupporttohelpsustainthemintheircaring
role,they are providers of services, not service users.Thisisanimportant
distinction,andonewhichcarersarekeentomaintain.
2.34 Theimpactofcaringcanbeimmense:5
• intensivecaringcanresultincarersbeingtwiceaslikelytosufferfrom
ill-healthasnoncarers;
• upto70%ofcarerswillhidethefactthattheirhealthissuffering;
• oneinfivegiveupworktocare;
• 46%needtoseeaGPduetotheimpactofcaringontheirownhealth;
• manycarersareisolatedorexperiencepovertyofopportunity;
• sometimes,thefinancialimpactofcaringcanbeacute(forexample,by
requiringadditionalheating,payingforspecialdiets,refurbishingthe
homedamagedbyachildwithautismandspendingmoreontransport,
especiallyinremoteandruralareas);and
• wherespousesorpartnersprovidecaringsupporttoeachotherand
whereonepersoninthepartnershipfallsillorexperiencesanadverse
event,thiscanresultinbothbeingadmittedtohospitalatmuchgreater
costtohealthandsocialcarebudgets.
“Caring for our son was placing a strain on our relationship, our employment
and our health. We were both physically and mentally exhausted. We never had
a holiday without the stress of caring for our son.”
Maryandherhusband,whocarefortheir18year-oldsonwhohasautism,a
learningdisabilityandchallengingbehaviour.
5 http://www.carersuk.org/Professionals/ResearchLibrary/Financialimpactofcaring/1228318101
23 Carers Rights
The evidence2.35 Theavailableevidencebasepointstocurrent and future savings across health and social carearisingfromeffectivecarersupport:
• trainingforcarerscanenablepatients,especiallythosewithchronic
long-termconditions,tobesupportedlongerwithinthecommunity;and
forolderpeopleitcandelayamovetoresidentialcare;6
• improvingskillsofcarersduringtherehabilitationofin-patientsreduces
costsforstrokecareandimprovestheirqualityoflifewithoutincreasing
theburdenofcaretofamiliesortransferringcoststothecommunity;7
• carersprovidedwithtrainingarelesslikelytopresentatGPswiththeir
ownhealthissues;8
• arecentreportinEngland9exploringthesocialandeconomicbenefits
ofshortbreaksprovisionaimedatthosewiththemostcomplexneeds
(familieswithdisabledchildren)estimatedfinancialsavingsforthe
stateof£174millioneachyear.Thiscouldbeachievedthroughthe
effectivedeliveryofshortbreakscombinedwitharangeofactivities,
includingextra-curricularandotheractivitiesinwhichdisabledchildren
canparticipate.Theestimatedfinancialsavingsforthestatefromfull
coverageofshortbreaksprovisionandotheractivityaimedatdisabled
childrenwouldincludesavingsfromlessbeingspentonlong-term
residentialcareandhealthservices.A key message is that families should have regular short breaks to sustain their health and wellbeing and to maintain savings to the state. CarersinScotlandsay
theybenefitmostwhentheyhavegoodquality,flexiblerespiteasand
whenrequired;and
• providingtelecaretopeoplecanresultinsavingstohealthandsocial
carebyreducingpersonalhealthproblemsaswellasreducingunplanned
admissionstohospitalandadmissionstoresidentialcare.10
The personalised approach2.36 Ensuringapersonalised approachcanhelpsupportchange.Eachcaring
situationisunique.However,carers-whatevertheircaringsituation-require
similartypesofsupportbutpersonalisedtothecaringsituationandresponsiveto
particularneedsandindividualcircumstances.
6 CarersUK7 http://www.bmj.com/cgi/content/full/bmj;328/7448/10998 http://www.carersuk.org/Professionals/ResearchLibrary/Healthandcare/12011860519 http://www.actionforchildren.org.uk/uploads/media/36/9163.pdf10 http://www.sociology.leeds.ac.uk/assets/files/research/circle/carers-scotland-report-dec-2009-web.pdf
24 Chapter2 pp.15-30
2.37 BuildingonChanging Lives,11theAssociationofDirectorsofSocialWork
(ADSW)hasgivenaclearcommitmenttoadvancingpersonalisation,recognising
thatmoreofthesamewillnotwork.
2.38 Thepersonalisationapproachisseekingtoinfluencepolicyandlocal
practice,promoteinnovationandempowerfrontlinestaff.ADSWwillbeengaging
withmanagersinlocalauthoritiesinordertoachievewiderchangeinculture,
systemsandprocessesthatwillbenefitbothcarersandthosewithcareneeds.Of
courseadvancingpersonalisation–movingtowardsmorepersonalisedsupports–is
asharedagendarelevanttoallsectorsandacrossallservices.
ACTION POINT 2.1Councils, with partners in NHS Boards, the national carer organisations and other Third Sector organisations, will continue to promote personalisation, working towards a position whereby staff at all levels receive induction training and continuous professional development on this approach, including having specific regard to the personalisation of carers’ support (also see chapter 14 on training).
Resources2.39 Resourcesforservicestopeoplewithcareneedsandforsupporttocarersare
withinlocalauthoritysocialcarebudgets.Otherlocalauthoritybudgetswillalsobe
relevant,especiallyinrelationtohousingandeducation.
2.40 TheNationalHealthService(NHS)inScotlandisalsoresponsiblefor
providinghealthservicestopeoplewithhealthcareneedsandforsupporttocarers.
2.41 Localauthorities’netrevenueexpenditureonsupportforcarers,including
respitecare,was:£100millionin2006-07,£117.034millionin2007-08and
£134.740millionin2008-09.12Inaddition,otherorganisationssuchasAlzheimer
Scotlandhavereceivedgrantstohelpsupportcarers.
11 http://www.scotland.gov.uk/Publications/2006/02/02094408/16
12 Whencomparingrevenueexpenditurelevelsin2008-09topreviousyears,therewasachangetothelocalgovernmentfundingstructurein2008-09,withtheformerring-fencedrevenuegrantsbeingrolledupintoGeneralRevenueFunding.Asaresultofthischange,thefigurein2008-09isnotwhollycomparablewiththepreviousyears’figures.
25 Carers Rights
2.42 SincethisGovernmenttookofficeinMay2007,ithasinvestedatleast
£15.814millioninsupporttocarersandyoungcarers.Someofthiscarriesforward
to2011.ThebreakdownoffinancialsupportfromtheScottishGovernmentisset
outinAppendix 4.Theconsiderablelevelofinvestmentinthetelecareprogramme
(over£20millionsince2006)alsobenefitscarers.
2.43 TheBIGLotteryannouncedinMarch2010that£50millionwouldbe
availablefrom2011tosupportpeoplewithdementiaandtheircarersandyoung
peopleleavingcare.Whilelotteryfundingdecisionsaretakenindependentlyof
Government,theScottishGovernmentisworkingcloselywiththeBIGLotteryFund
onthisinitiative.
Challenges2.44 Thisstrategyisbeingpublishedinadifficulteconomicclimate,with
pressuresonpublicfinancesandatatimewhenthepopulationisageing
significantly.Itisdifficulttopredictwithcertaintythedurationoftheeconomic
difficulties.However,publicspendingwillbeunderconsiderablepressureoverthe
nextfewyears.
2.45 Despite the economic challenges, local authorities and Health Boards will commit to delivering incremental improvements in support for carers, recognising that demand on statutory health and social care provision is unsustainable without changes in the pattern of service delivery.
2.46 Service redesign, while necessary, has the potential to adversely affect the health and wellbeing of carers, if they do not have access to appropriate support.
Opportunities2.47 Supportforcarersisanessentialpartofkeystrategicdevelopmentssuch
astheReshapingCareforOlderPeopleprogramme,ShiftingtheBalanceof
Care,Scotland’sNationalDementiaStrategy13andtheprogrammeofworkon
IndependentLiving,allbeingtakenforwardbytheScottishGovernmentwith
itspartners.TheScottishGovernment,localauthoritiesandHealthBoards,with
keypartners,canoptimisetheuseofresourcesandharnesstheeffortbetterby
strongerstrategicplanningandmorejoined-upapproachestocarersupport.
13 http://www.scotland.gov.uk/Topics/Health/health/mental-health/servicespolicy/Dementia
26 Chapter2 pp.15-30
2.48 Withinexistingfinancialresources,reducingavoidablehospitaladmissions
byprovidingappropriatesupportandservicesinthecommunityisthesingle
mostsignificantareathatcandeliverbetteroutcomesforpeople.Italsohasthe
potentialtoreleaseresourcestouseelsewhereinthehealthandsocialcaresystem.
2.49 Aphilosophyofcarethatpromotespeople’sindependenceandcontrolof
theirsituationbyusingcurrentresourcestooptimumeffectwillreduce,butnot
eliminate,theneedforadditionalresourcestosupportcarers.
Role of Scottish Government, COSLA and partners2.50 TheScottishGovernment’sroleinrespectofsupporttocarersistoset
outthestrategiccontext,aswehavedoneinthisstrategy.Thestrategiccontext
providesthereferencepoint,onaScotland-widebasis,forlocalauthorities,
CommunityPlanningPartnerships,HealthBoards,CommunityHealthPartnerships,
statutoryagenciesandtheThirdSectortolocatetheirplansofaction.The
ScottishGovernment’sleadinthisareawillbeimportanttohelpsupportlocal
implementation.
2.51 COSLAistheScottishGovernment’sformalpartnerinthedevelopmentof
thisstrategy.COSLA’sleadershipwillbeimportanttosupportlocalimplementation.
2.52 Localauthoritiesareresponsiblefordecisionsmadeatlocallevelandthey
arebestplaced,withpartners,todeterminelocalpriorities.
2.53 Giventheevidenceaboutdemographicandsocialchangesandthepivotal
roleofcarersinsustainingcareinthecommunity,theScottishGovernmentand
COSLAexpectlocalauthoritiestohaveregardtothekeymessagesinthisstrategy
andtoimplementtheActionPointsrelevanttothem,aslocalprioritiesdictate.
2.54 AsNHSHealthBoardsareaccountabletoMinisters,itwasnotappropriate
ornecessaryforthemtohavethesameformalpartnerstatusasCOSLAinthe
developmentofthisstrategy.However,theywereofcoursevitalcontributorsto
theworkonthestrategy.TheScottishGovernmentexpectsNHSBoardstosupport
implementationofthestrategyassetoutintheActionPoints.Health Boards are expected to make further progress and to take forward beyond March 2011 the good practice in the Carer Information Strategies (CIS), which the Scottish Government funded to March 2011.
27 Carers Rights
2.55 TheScottishGovernmentcannotdeterminetheprioritiesoftheThird
Sector,althoughwemayinfluencethemthroughScottishGovernmentfunding
tovoluntarysectororganisationstosupportcarers.However,weencouragethe
ThirdSectortoconsiderandtakeforwardtheActionswithinthisstrategyto
supportcarers.Inparticular,thenationalcarerorganisationshaveakeyrolein
implementingthestrategy,andsomeoftheActionPointsarespecificallyaimedat
them.
2.56 TheScottishGovernmentexpectslocalauthorities,HealthBoards,
CommunityPlanningPartnershipsandCommunityHealthPartnershipstodirectly
involveawiderangeofpartners,includingAlcoholandDrugsPartnerships,in
decisionsaboutplanninganddeliveringsupporttocarers.
2.57 The Scottish Government values the work of those statutory and Third Sector organisations which actively support carers. To reinforce and build on that work, across all of the statutory sector and relevant Third Sector agencies, the Scottish Government expects a change in culture so that it is everyone’s job to actively identify and support carers.
Baseline Position2.58 InordertoevaluateprogressinsupportforScotland’scarersoverthenext
5years,itisnecessarytoestablishabaselinepositionasat2010.Nationally,there
isonekeyareawhereinformationiscollectedsystematically.Thisis:
• The number of respite weeks provided each year.
2.59 Thenumberofrespiteweeksprovidedin2008-09was193,65014across
Scotland(withmanylocalauthoritiesusinganewmethodologytocalculatetheir
respiteweeks).The2009-10figureswillbepublishedlaterin2010andwillbe
comparablewiththe2008-09figure.ThereaftertheScottishGovernmentwill
collectthefiguresfromlocalauthoritieseveryyear.The baseline position in 2008-09 is 193,650 respite weeks.
14 RespiteCare,Scotland2009(FinalFigures)
28 Chapter2 pp.15-30
2.60 UndertheCommunityCareOutcomesFramework,localCommunityCare
Partnershipsareencouragedtocollectdataagainst16inter-relatedmeasures.
Theseincludemeasureson:
• the % of carers who feel supported and capable to continue in their role as a carer;
• the % of carers who are satisfied with their involvement in the design of the care package for the person they care for; and
• the % of carers’ assessments completed to national standard.
2.61 Thedataisexaminedandusedforbenchmarkingpurposesbythe
CommunityCareBenchmarkingNetwork.Alargeproportionofpartnerships
arealreadyusingthesemeasuresandothersareintheprocessofintroducing
them.TheScottishGovernmentanticipatesthatsuchreportingwillspreadacross
Scotlandinduecourse.Wherelocalagenciesarealreadycollectingdataagainst
thesemeasures,thiswillbepublishedlocally.
2.62 Inaddition,theCommunityCareBenchmarkingNetworkiscurrentlyrunning
apeer-ledprojectoncareroutcomeswhichincludescollectingdataonthenumber
ofcarersassessmentscarriedoutineachpartnershipareaacrossScotland.Dataon
thisrangeofactivitieswillbepublishedaspartofareportontheprojectinAutumn
2010.
ACTION POINT 2.2The Scottish Government will publish on its website each year the baseline position on respite support to carers and the position in all years up to 2015.
ACTION POINT 2.3Each year, participating local partnerships will collect the relevant data on outcome measures relating to carers in the Community Care Outcomes Framework and will publish progress against the three outcome measures.
Good Practice2.63 TheScottishGovernmenthasreceivedawiderangeofgoodpractice
examples/casestudiesfromthestatutory,voluntaryandprivatesectors.These
goodpracticeexamplesdemonstratethecommitmentoflocalauthorities,
NHSBoards,theThirdSectorandtheprivatesectortoensuringsupportforcarersin
ameaningfulandsustainableway.
29 Carers Rights
2.64 Itisnotpossibletoshowcaseallthegoodpracticeexamplesinthisstrategy.
We are therefore publishing in a separate document the good practice examples received, as well as examples of good practice within the NHS Boards’ Carer Information Strategies.Wemakereferenceinthisstrategytosomeofthe
examples.Thefulltranscriptsareintheseparatedocument.
2.65 Thechallengeistospreadthegoodpractice,recognisingthatlocal
variationissometimesnecessarytoreflectdifferingpopulations,geographical
considerations,theexistenceofservicesalreadyinplaceandsoon.Certainly,some
oftheexamplessuchase-learning modules for NHS staffinoneareacanbe
rolledoutatverylittlecost,andwithhighimpact.A high proportion of healthcare practitioners in Lothian have received training in carer awareness through NHS Lothian’s e-training programme.
2.66 However,toachieveconsistent,highqualitystandardsandapproaches
acrossthecountry,itisnotenoughsimplytocopyaserviceorsupportthatworksin
onearea.Whatisrequiredtoproducegoodoutcomesforcarersisanunderstanding
ofthechangesneededtoexistingservicesandsupportstomakethemmore
effectiveandefficient,andacommitmentbydecision-makerstoimplementthese
changes.
ACTION POINT 2.4Over the next 5 years, councils and Health Boards, with partners, will take account of good practice promoted in local authority and Health Board areas. They will consider how the good practice can be transferred, if appropriate, and/or will consider whether or how existing services and supports can be reconfigured to achieve the best outcomes for carers and for those they care for. As a first step, councils and Health Boards, with partners, will consider the good practice contained in the publication accompanying this strategy.
ACTION POINT 2.5By 2015, the Scottish Government will ensure that the planned acceleration in pace of sharing good practice under Reshaping Care takes account of good practice in supporting carers.
30 Chapter2 pp.15-30
Care 21: The Future of Unpaid Care in Scotland2.67 TheCare21Report15made22recommendationsaboutsupportforcarers
andyoungcarers.ThethenScottishExecutivegavedetailedconsiderationtoeach
recommendationandprovidedaresponseinApril2006.16Thisstrategybuildson
the22recommendationsintheCare21report.The22recommendationsareset
outinAppendix 5, whichalsodetailstheprogressmadesince2006.
15 http://www.scotland.gov.uk/Publications/2006/02/28094157/216 http://www.scotland.gov.uk/Publications/2006/04/20103316/3
Chapter5Carers’RightsChapter5Carers’RightsChapter3ProfileofCarers
32 Chapter3 pp.31-35
The purpose of this chapter is to provide key data on the characteristics of Scotland’s carers. It is necessary to have up-to-date data for planning, shaping and delivering support.
3.1 Thereareanestimated657,300carersinScotland(ScottishHousehold
Survey(SHS)2007-08.Thenumberofcarersbylocalauthorityareaaresetoutin
Appendix 6.
3.2 Caring requirements: TheSHS2007-08estimatesthatthereisaperson
requiringcareinaround14%ofhouseholds.However,33%ofhouseholdsreport
thatthereisapersoninthehouseholdwithalong-termillnessordisability.
3.3 Prevalence of caring: Around10%ofthepopulationprovidescareto
anotherperson.(Census2001).
3.4 Number of carers: 79%ofhouseholdswithcarersinthemhaveonecarer,
17%havetwocarersand4%havethreeormorecarersprovidingcareinthe
household(SHS).
3.5 Who carers care for: Themajorityofcarersprovidecaretoaparent,closely
followedbycaretootherrelatives(spouses,children,siblings)(SHS).
3.6 Time spent caring: Almost halfofScottishcarersprovidingcaretoother
householdmemberswereproviding‘continuouscare.’23%ofallcarersarecaring
for50hoursormore.63%ofcarerswereundertakinglessthan20hoursofcare
eachweek.(Census2001).Forthosecarershelpingorcaringforanotherpersonnot
livingwiththem,79%reportedthattheywereprovidinglessthan20hoursofcare
eachweek(SHS).
3.7 Duration of caring role: Forthoseundertakingacaringrolewithinthe
household,over70%ofcarershavebeenprovidingcareforover5years(SHS).
3.8 Age:Ascarersgetoldertheytakeonmorecaringresponsibility(Census
2001).
3.9 Gender:Thedataindicatesthataround11%ofwomenareundertaking
acaringrole,comparedto8%ofmen.Theoverallprevalenceofwomencarers
tomalecarersisaround60:40(Census2001).Betweentheagesof30and69,
morewomenarecarersbutthegenderbalanceismoreevenforyoung carers
33 Caring Together
andforoldercarersaged70andoverwhenacaringroleisundertakenwithinthe
household(SHS).
3.10 Ethnicity:Allofthedatasuggeststhedifficultyinunderstandingthe
numbersofBMEcarersinsociety.Lowreportednumbersofcarersshouldnotbe
assumedtomeanlowprevalenceofcaring,butratherareflectionofthedifficulties
surveyresearchhasinadequatelyrepresentingthesegroups.
3.11 TheMinorityEthnicCarersOlderPeople’sProject(MECOPP)hasundertaken
asurveyofsupportandservicesprovidedtoBMEcarersbylocalauthoritiesand
HealthBoardsinScotland.Thereportwillprovidedatatosupportthebaselineof
informationcurrentlybeingestablishedbytheScottishGovernment.
3.12 Economic Activity:Forcarersinemployment,part-timeworkersarethe
mostlikelytobecarers.Ofthosewhoundertakeover20hoursofcareeachweek,
part-timeworkersandunemployedpeoplearethepredominantcarergroups
(Census2001).
3.13 Working Status: Theworkingstatusofahouseholdleastlikelytocontaina
carerwhocaresforanotherhouseholdmemberissingleworkingadulthouseholds.
Thestatusofhouseholdsmostlikelytocontainacarerisacouplehouseholdwhere
neitherworks(SHS).
3.14 Social Class: Thesocio-economicclassificationleastlikelytohaveacarer
whocaresforanotherhouseholdmemberisthehighermanagerialandprofessional
occupations,ataround7%ofhouseholds.Householdswithacareraremostlikely
tobeinthelowermanagerialandprofessionaloccupationsclass(26%)(SHS).
3.15 Scottish Index of Multiple Deprivation (SIMD):Thebiggestproportionof
householdswithacarerwhocaresforanotherhouseholdmember(28%)areinthe
20%mostdepriveddatazonesintheSIMD.Theproportionofhouseholdswitha
carerthendecreasessteadilyasdeprivationdecreases,sothattheleastdeprived
20%ofdatazonesalsohasthelowestprevalenceofhouseholdswithcarersin
Scotland(13%)(SHS).
3.16 Housing tenure:Carerswhocareforotherhouseholdmembersaremost
likelytoowntheirpropertyoutright(35%),whichislikelytobelinkedtoatendency
forcarerstobeolderand/orretired.Afurther33%ofhouseholdswithacarer
sociallyrenttheirproperty(SHS).
34 Chapter3 pp.31-35
ACTION POINT 3.1The Scottish Government will make the information on carers and young carers from surveys such as the Scottish Household Survey and Scottish Health Survey accessible to researchers, care providers and the public through its website and publications.
ACTION POINT 3.2In respect of the 2011 Census, the views of carers’ organisations will be taken into account in deciding what analysis tables will be produced for the General Register Office for Scotland 2011 Census website.
Diversity of the caring population3.17 CarersreflectthediversityofScotland’spopulation.Therearecarerswho
work,carerswhocannotworkduetotheirintensivecaringorage,carerswhowant
toworkorpursueopportunitiesinFurtherorHigherEducation,oldercarersand
young carersunder16,loneparentcarers,lifelongcarers,studentcarers,BME
carers,LGBTcarers,carersinremoteandruralareasandmanyothertypesofcarer.
Ofcourse,carersmayfallintomorethanonecategory.
3.18 Kinship carersaredifferentfromcarersinthattheyarethefamilyand
friendsofyoungpeoplewhoarein,orareatriskofcominginto,thecaresystem.
Kinshipcarersaresometimestheparentsofadultswithsubstancemisuseproblems
whocarefortheirgrandchildren.Theyshouldreceiveakinshipcareallowancefrom
thelocalauthority.However,akinshipcarercanalsobeacarerif,forexample,the
grandchildhasadisabilityand/orifthekinshipcarerisalsocaringfortheirpartner,
ownparentorsomeoneelse.Therefore, support for people who are kinship carers through the carers’ route should always be considered if appropriate.
Diversity of the cared-for population3.19 Justascarersarediverse,sotooarethepeopletheycarefor.Itisnot
straightforwardtocategorisecaringsituations.Forexample,apersonwith
dementiamayalsobefrailandelderlyorapersonwithalearningdisabilitymay
alsohaveamentalhealthproblem.Therearemanypeoplebeingcaredforwho
havelong-termconditions.
3.20 TheScottishConsortiumforLearningDisability(SCLD)isworkingwith
localauthoritiestoensurethegatheringofmoreaccuratestatisticsonadultswith
learningdisabilitiesandautism.The200817figuresshowthat7,793adultswith
learningdisabilitiesandautismknowntolocalauthoritiesinScotlandlivedwitha
carer.Thisrepresents48%oftheadultsforwhomthisinformationwasreported.
17 ScottishConsortiumforLearningDisability:eSAYproject
35 Caring Together
3.21 Therearesomecommunitiesofcarersweknowverylittleabout,most
notably:refugees,asylumseekers,gypsytravellersandcarerswhothemselveshave
disabilities,includinglearningdisabilities.TheScottishGovernmentwillconsider
theneedforresearchinthisarea.
ACTION POINT 3.3By 2012, the Scottish Government will draw up a specification and seek to commission research on communities of carers we know little about, including refugees, asylum seekers, gypsy travellers and carers with disabilities, including learning disabilities. This is relevant to young carers too.
Chapter5Carers’RightsChapter4PrioritisingSupporttoCarers
37 Caring Together
The purpose of this chapter is to make clear that carers most in need should be prioritised for support. This does not mean delivering support in response to crises. The emphasis should be on early intervention and preventative support. There is a link to chapter 3 on the profile of carers in that some further data is provided on carers’ characteristics. Small packages of cost-effective support are appropriate.
4.1 Therearecarerswhoareparticularlyvulnerableandinneedofsupport,
especiallypreventativeinnature.Theestimatedhalfofcarerswhoprovidecareto
anotherhouseholdmemberandwhoarecaringcontinuouslyeachandeveryday
arecaringintensively.Furthermore,theScottishHouseholdSurvey2007-08shows:
• 18%ofcarersareaged70andover;
• 19%ofcarersareaged60-69;
• 4%ofcarerscarefortwoormorepeople;and
• 70%ofcarershavebeencaringforover5years.
4.2 Anothermeasureof‘need’mightbethosecarerslivingindeprivation,who
willbelessabletopayforservices,morelikelytobeinpovertyandpoorerhealth
andmoresociallyisolated.
4.3 Throughreviewoftheirlocalstrategies,localauthoritieswithpartners
willwishtotakeaccountofthemostvulnerablecarersaccordingtoanobjective
assessmentofneedwhichalsotakesaccountofthenatureandlevelofrisk.The
ScottishGovernmentandCOSLAacknowledgethatauthoritiesmayalreadyhave
donethis.
4.4 Thisdoesnotcontradicttheemphasisonearlyinterventionorthe
preventativeapproach.Whatitdoesmean,forexample,isthatfrailelderlycarers
mightbeconsideredtobeingreatestneed:apreventativeapproachwouldmean
earlyidentificationofthesecarersandtheavailabilityofthenecessarysupportsto
enablequality-of-lifeandinturntopreventcrises.
4.5 Thereneedstobemorefocusonearlyintervention,withcrisissupport
availabletoo.Intimesoffinancialconstrainttheimperativeisusuallytotake
actionwhenthereisacrisisthatneedstackling.However, a greater emphasis on anticipatory and preventative support in relation to both the carer and cared-for person – which does not have to be complex or expensive - can delay or prevent the need for crisis intervention, and is therefore more cost-effective.
38 Chapter4 pp.36-38
4.6 TheReshapingCareProgrammehasastrongemphasisonearlyintervention.
Afocusonanticipatorysupportforcarersisessentialaspartofthisprogramme.
4.7 Carerswhosecaringresponsibilitiesareminimalalsoneedtohaveadequate
informationsothattheyaresupportedshouldtheircaringresponsibilitiesbecome
moredemanding,andpossiblyhave‘emergencyplans’inplaceshouldtheir
circumstanceschangequickly.
4.8 Notwocarersorcaringsituationsareidentical.Carersinasimilarcaring
situation-forexample,caringforagrownupchildwithlearningdisabilities-may
havedifferentneedsduetoarangeofcircumstances,includingtheavailability
ofservicesintheirarea,supportfromfamilyandfriends,supportfromthewider
community,people’slevelofincometopurchaseservicesandsoon.Allthese
considerationsareimportant.
ACTION POINT 4.1By 2012, if they have not already done so, local authorities, with partners, will wish to revisit their local carer strategies to identify and support carers in need according to their own assessment of need. To support this process, the Scottish Government will produce a short list of key points that local carer strategies should address.
ACTION POINT 4.2By 2013, local authorities, with partners, will aim to identify carers in greatest need according to an objective assessment of need, and in line with published indicators, which also takes account of the nature and level of risk. They will aim to provide support or signpost on to support.
ACTION POINT 4.3Over the next five years, local authorities and Health Boards, with partners, should seek to provide preventative support to carers and minimise the need for crisis intervention.
ACTION POINT 4.4Over the next five years the Reshaping Older People’s Care Programme will look to ensure a focus on early intervention for carers. Good practice in this area will be transferred to other care settings.
Chapter5Carers’RightsChapter5Equalities
40 Chapter5 pp.39-43
The purpose of this chapter is to reinforce the importance of the equalities dimension in identifying and supporting carers. It is important to recognise, and to respond to, the particular challenges for some groups of carers. People should be free from disadvantage or discrimination as a consequence of caring.
As discussed in chapter 3 on the profile of carers, the lack of data on hard-to-reach or hidden carers, including BME carers, should not imply that they do not exist. This chapter also links to chapter 4 on prioritising support to carers and to chapter 6 on carers rights. We also include within this equalities chapter support to carers in remote and rural areas which is an equalities issue in terms of the availability of, and access to, services and support in certain geographical areas.
5.1 Thenewcross-cuttinglegislativeframework,The Equality Act 2010,18is
intendedtoprotecttherightsofindividualsandadvanceequalityofopportunity
forall;toupdate,simplifyandstrengthenthepreviouslegislation;andtodeliver
asimple,modernandaccessibleframeworkofdiscriminationlawwhichprotects
individualsfromunfairtreatmentandpromotesafairandmoreequalsociety.
Chapter6oncarers’rightscoversinmoredetailtheprovisionsintheEqualityAct
2010.
Equality Groups5.2 Ensuringequalitiesinraceorethnicity,disability,genderorsexual
orientation,ageorreligionmeansensuring opportunity for all carers to access suitable resources and support. Carersmaybeexcludedfromsupportbecause
thereisnorecognitionoftheirparticularcaringsituation.Theresultmaybelackof
opportunity,difficultyinaccessingprovisionorunresponsiveservices.
5.3 Supportneedstobedeliveredinasensitiveway.So,forexample,carer
trainingmightbedeliveredtoBMEfemalecarersintheirownright.Inrelationto
genderissues,professionalshavetorecognisethatdaughtersmaynotwishtocarry
outpersonalcarefortheirfathers.Carers’centresshoulddeliversupporttopartners
andbecarefulaboutadvertisingthemselvestofamiliesonly,whichmightbe
off-puttingtoLGBTcarers.Healthandsocialcareprofessionalsneedtobesensitive
tocaringrelationshipsandthedifferentformsthesemaytake.
18 FurtherinformationcanbefoundattheEqualityandHumanRightsCommission(EHRC)websiteat: http://www.equalityhumanrights.com/
41 Caring Together
“We were treated differently to heterosexual couples who meet in a private
space during visiting times whereas we had to meet in the dining room of the
hospital ward. One day when I put my arm around Martin to comfort him I was
told to stop by healthcare staff as they thought this may lead to ‘other things.’
As a very private person I was extremely upset and humiliated.”
Brian,whocaresforhispartner,Martinwhohasmentalhealthproblems.
5.4 Thereshouldbegreaterawarenessindeliveringculturallycompetent
services.Culturalcompetence19asaconcepthasevolvedparticularlyinrelationto
BMEgroupsbutitappliesequallytootherequalitygroupsandallformsofsocial
care.
5.5 Culturalcompetencerecognisesthattherearebarrierswhicheffectively
preventBMEcarersandserviceusersaccessingappropriatesupportandservices.
Thesebarriersmaybevisible,suchasproducinginformationinEnglishonly,or
invisible,suchastheassumptionsofindividualworkerswhichmayleadtocultural
stereotyping.
“I look after my wife myself. Our children have grown up and moved away. It
is very difficult and tiring but I have to manage. I do not read or speak English
so I did not know I could get any help until a Chinese worker told me. My life is
easier now but there are still many Chinese who do not know they are a carer.”
MrLimcaresforhiswife,whohashadastrokeandisalsofrailelderly
(translatedintoEnglish).
5.6 ProblemsinidentifyingBMEcarerscanleadproviderstobelievethat
thereisnoneedordemandfortheirservices.Additionally,BMEcommunitiesin
differentpartsofScotlandcanberelativelysmall,withanevensmallerBMEcarer
population.Thismayleadproviderstobelievethata‘criticalmass’doesnotexist
tojustifythedevelopmentofspecificservices.Whilst it may not be practical or appropriate to develop new services, providers must consider whether they are excluding people from support that other carers receive. The‘mainstreaming’
agendarecognisesthatmainstreamserviceshavetochangetoaccommodatethe
needsofadiversepopulation.‘Mainstreaming’isequallyapplicabletoallequality
groups.
19 TheScottishGovernmentdefinesculturalcompetenceas:‘aservicewhichrecognisesandmeetsthediverseneedsofpeopleofdifferentculturalbackgrounds.Akeypartofculturalcompetenceisensuringthediscriminationonthebasisofculture,belief,race,nationalityorcolourhasnoroleinthedeliveryofservices.’
42 Chapter5 pp.39-43
5.7 Therewillbesomecarerswhoarethemselvesdisabled.Theirparticular
needsshouldbefullyaddressedbylocalauthorities,HealthBoardsandother
partners.Thiswillbeinlinewiththeexistingdisabilitypublicsectorequalityduties.
5.8 Equality Impact Assessmentscanprovideanimportantmechanismfor
increasingawarenessofcarers’needsandrightsinthepublicsector.Thepublic
sectorisrequiredtoensurethatequalitydutiesonrace,disabilityandgenderare
integratedintoallthefunctionsandpoliciesofScottishGovernmentDirectorates
andAgenciesandoflocalauthoritiesandHealthBoards.Weallneedtoassessthe
impactofourpoliciestoensurethatwedonotinadvertentlycreateanegative
impactforequalitygroups.
ACTION POINT 5.1The Scottish Government, with COSLA and partners, will ensure that all the Action Points in this strategy are taken forward in ways which fully address the equalities perspective.
Caring in Remote and Rural Areas5.9 Providingsupporttocarersinremoteandruralareashasanequalities
dimensiontotheextentthatcarerslivingintheseareasmaynothaveaccessto
supportthatothercarershave.Werefertotheparticularneedsofcarersinremote
andruralareasthroughoutthisstrategy,especiallyinrelationtotheaccessibilityof
servicesforthecared-forperson,theprovisionofshortbreaks,carertraining,carer
healthandincome.Theaccessibilityofhealthcareservicesforthepersonwithcare
needsisanissue.
5.10 Anotherkeyissueistransport.Manycarersinremoteandruralareashave
totravellongdistancesandthereareissuesaboutthelackofadequatetransport
orthehighcostsoftransportation.Appendix 7 setsoutthefullrangeofScottish
Governmentpoliciesdesigned to improve transportation in remote and rural areas.
“Living in a rural area we rarely go out other than for medical appointments
due to fuel and time costs. Shopping and seeing friends is always squeezed into
these travel arrangements.
Doctor 68 miles return (1 hour 30 minutes), hospital 140 miles return (3 hours).”
Ann,whocaresforherhusbandwithcomplexhealthproblemsandlimitedmobility.
43 Caring Together
5.11 Communitytransportservices20arenormallyoperatedbyvoluntary
organisationsandcantakedifferentformssuchascommunityminibuses,
dial-a-bus,andvoluntarycarschemes.Thesetypesofserviceareveryvaluablein
ruralareaswheretherearenoorverylimited,publictransportservicesandareof
particularbenefittoolderanddisabledpeople.Manyservicesaredemandled,
providingadoor-to-doorserviceatthetimerequestedbythepassenger.Thistype
ofservicemaybeofbenefittocarers,particularlyinruralareas.
5.12 Thereareotherkeyissuesrelevanttocaringinremoteandruralareas.
Asaresultofhavingtotravellongdistances,itcanbedifficulttokeephospital
andGPappointments.Innovativesolutionsareneededtohelpmakelifemore
straightforwardforcarersinruralareas.Telehealthcaresolutionsareveryrelevant
tocaringsituationsinremoteandruralareas.Telephonesupportinrelation
tohealthandwellbeingandcarertrainingshouldbeexploredfurther.The
developmentofruralco-ordinatingnetworks,perhapstofacilitaterespite,canhelp.
Thefurtherdevelopmentofcommunityfacilitatorsorco-ordinatorsofsupportin
remoteandruralareascanbeexploredtoo.
ACTION POINT 5.2From 2010 onwards, the Scottish Government will work with the relevant local authorities, Health Boards and Third Sector organisations to develop plans to help address rural carer issues.
20 Localauthoritiesmaybeabletoprovideinformationoncommunitytransportservicesoperatingintheirarea.Inaddition,theCommunityTransportAssociation,[email protected],maybeabletoprovidedetailsofcommunitytransportservicesinruralpartsofScotland.
Chapter5Carers’RightsChapter6CarersRights
45 Caring Together
The purpose of this chapter is to set out the Scottish Government’s view on the development of carers rights. Once commenced, the Equality Act 2010 will be an important step forward, as will the provisions in the forthcoming Self-Directed Support (Scotland) Bill. We emphasise that existing carers rights (as enshrined in law) should be further enhanced by the development of a Carers Rights Charter, which will consolidate in one place the existing rights and will set out key principles of support to carers and outcomes. The Scottish Government will consider whether further rights should be enshrined in law.
6.1 TheEqualityAct2010willprohibitdirectdiscriminationandharassment
basedonassociationandperceptioninrespectofrace,sex,genderreassignment,
disability,sexualorientation,religionorbeliefandageinrelationtoemployment
andotherareas.Thislegislationwillcovercaseswherethelessfavourable
treatmentisduetothevictim’sassociationwithsomeonewho,forexample,is
disabled.Thediscriminationwillbeunlawfulinrelationtoaperson’semployment
andalsothroughtheprovisionofservicesandhousingandinotherareas.
6.2 ThePatient Rights (Scotland) Billaimstoplacepatientsatthecentre
oftheNHSinScotland.IfapprovedbytheScottishParliament,thishealthcare
legislationwillhelpensurethatpatients’rightsandentitlementsaremorewidely
understoodandused.Aspartoftherequirements,thereareexpectedtobePatient
RightsOfficersforHealthBoardareas.This will have direct relevance to carers.
6.3 TheSelf-Directed Support (Scotland) Billwillseek,amongstotherthings,to
givelocalauthoritiesthepowertoprovidedirectpaymentstocarers.
6.4 Self-directedsupportisoneformofpersonalisedsupportwhichensures
individualscanchoosehowandbywhomtheirsupportisprovided.Evidence
suggeststhatself-directedsupportanddirectpaymentscanleadtoimproved
outcomesforindividuals,familiesandcommunities.
6.5 TheScottishGovernmenthasconsultedonadraftNationalStrategyon
Self-DirectedSupportandisconsultingonproposalsforaSelf-DirectedSupport
(Scotland)Bill.OneoftheaimsintheBillwouldbetoextendeligibilityfordirect
paymentstovariousgroupsthatarecurrentlyexcluded,includingcarers.TheBill
wouldprovidelocalauthoritieswithgreaterflexibilitysothattheycanprovide
supporttocarersintheformofadirectpayment.
46 Chapter6 pp.44-47
6.6 Theaimistoremovebarrierstopeopletakingupself-directedsupport,
includingdirectpayments.Barrierstodirectpaymentsinclude:assumptions
andattitudesaboutthecharacteristicsofpeoplewhomaybenefitfromthem;
limitationsontheuseoftheallocatedbudget;andthechallengesofsustaining
currentserviceswhilstinvestinginnewindividualisedapproaches.
6.7 Theuseofdirectpaymentscanhelpmeettheneedsofcertainsectionsof
thecarerpopulation,includingBMEserviceusersandcarers.The Minority Ethnic Carers Older People’s Project (MECOPP) is supporting a group of BME carers and the people they care for in West Lothian to pool their direct payments together to facilitate support within mainstream daycare services.
6.8 Currentdirectpayments’legislationonlyallowsdirectpaymentstobeused
toemployaclosefamilymemberinexceptionalcircumstances,“…wheresecuring
theservicefromsuchapersonisnecessarytosatisfactorilymeettheserviceusers’
assessedneeds.”Itisimportantthatthisfacilityismadeknowntocarersfromthe
outsetandisusedwherethiscouldprovidebestoutcomes,forexamplewhen:
• apersonrequiresend-of-lifecare;
• therearefewserviceprovidersinruralorremoteareas;
• itisconsideredtobethemostappropriatewayofmeetingan
individual’sculturalneeds;and
• afeatureoftheperson’sdisabilityischallengingbehaviourtowards
strangers.
6.9 Carersrightswhicharenotenshrinedinlawcanbetakenforwardina
numberofdifferentways.Inparticular,aswellastheprovisionsinthisstrategy
relatingto,forexample,theprovisionofinformationandadvice,carertraining,
shortbreaksandtelecare,the Scottish Government will also ensure that carer representatives are members of Community Health Partnerships (CHPs) – see chapter 7 for further details.
6.10 TheScottishGovernmentintendstoraisetheprofileofcarers’issueswidely
throughaCarersRightsChartersettingoutandconsolidatingexistingrights,what
carersneedtohelpachievebetteroutcomesandwhatlocalauthorities,Health
Boardsandothersneedtodotosupportcarers.Aclearsetofprinciplesinsupport
ofcarerswillbeestablished.TheCharterwillbewidelydistributed.
47 Caring Together
ACTION POINT 6.1From 2010 onwards, the Scottish Government will work with the national carer organisations to promote the Equality Act 2010, once commenced, especially the provisions providing protection from discrimination for carers.
ACTION POINT 6.2The Scottish Government will work with COSLA and local authorities to ensure a consistent approach across local authorities to the employment of close family members in exceptional circumstances. The guidance on implementation of the Self-Directed Support Strategy, to be produced by the Scottish Government, will include a section on approaches to the employment of close family members in exceptional circumstances.
ACTION POINT 6.3By December 2011, the Scottish Government will produce, with COSLA and partners, a Carers Rights Charter for wide distribution to local authorities, Health Boards, Community Health Partnerships and other bodies. By July 2013, the Scottish Government will consider whether further rights should be enshrined in law.
Chapter5Carers’Rights
Chapter7CarerInvolvementinPlanning,ShapingandDeliveryofServicesandSupport
49 Caring Together
The purpose of this chapter is to set out how carers will be further involved in the planning, shaping and delivery of services and support. Their involvement is crucial to ensure the best quality services and support, delivered in a personalised way. Carers should be involved in a number of different ways.
7.1 Community Health Partnerships (CHPs),establishedbyNHSBoards,havea
roleindeliveringthechangerequiredtosupportthecared-forpersonandthecarer.
Thisisbecausetheyhavetoensurethatpeopleandcommunitiesareengagedin
thedecisionsmadeonhealthserviceswhichaffectthem.
7.2 CHPsprovideanopportunityforpartnerstoworktogethertoimprovethe
livesoflocalcommunities.CHPsshouldactivelyinvolvethepublic,patientsand
carers.
7.3 SomeCHPshavecarerrepresentationonthem,throughcarerorganisations.
CarersthemselvesarerepresentedonPublicPartnershipForums,whichareoneof
themainlinksbetweencommunitiesandCHPs.MembersofthePublicPartnership
Forums(usuallyChairsand/orVice-Chairs)generallyhaveaplaceonthelocalCHP,
andanumberofcarerscurrentlyfulfilthisfunction.
The Scottish Government believes there should be carer representation on CHPs and will ensure that this happens.
7.4 Public Partnership Forumscontinuetoprovideavaluableinputintothe
planninganddeliveryoflocalservicesanditisimportantthattheirrolecontinues
toevolve.Assuch,theScottishGovernmentwillbeundertakingareviewofPublic
PartnershipForumssothattheirrolecanbestrengthenedanddeveloped.Given the important contribution that carers make to Public Partnership Forums through their expertise and knowledge, we are committed to involving them in the review so that their interests are fully represented.
ACTION POINT 7.1In 2010-11, the Scottish Government will ensure carer representation on CHPs by writing to the Chief Executives of Health Boards to make this happen.
ACTION POINT 7.2In 2010-11, in taking forward a review of Public Partnership Forums, the Scottish Government will ensure that it consults with appropriate carer organisations in order that their interests are fully represented.
50 Chapter7 pp.48-51
ACTION POINT 7.3Local authorities and NHS Boards will ensure they fully involve the national carer organisations, other Third Sector organisations and carers, as appropriate in the planning and shaping of services and support.
7.5 Carerswillcontinuetobeinvolvedininspectionsofserviceswhenthenew
scrutinybodies,SocialCareandSocialWorkImprovementScotland(SCSWIS)and
HealthcareImprovementScotland(HIS),aresetupin2011.
7.6 The Healthcare Quality Strategy for NHSScotland,publishedinMay
2010,21willalsohelpensurethevoiceofcarersisheard.Itisthekeydriver
forfurtherchangeandimprovementsinhealthcare.Thisstrategywillseekto
ensurethathealthcareisofthehighestquality,withimprovedsafetyandclinical
effectivenessbasedonperson-centredsupportandthefullinvolvementofcare
partners.Therewillbeanemphasisondevelopingrelationship-basedcareand
shareddecision-making.Afurtheraimistoensurethatpatientsandcarershave
clearinstructionsandinformationoncare,treatmentandsymptomsandthatthey
arefullyinvolvedintreatmentchoices.Therewillbeaclearemphasisontreating
carersasequalandexpertpartnerswithknowledgeandexperience,especially
aboutthepersontheycarefor.
7.7 TheHealthcareQualityStrategylistsNationalQualityOutcomeMeasures,
someofwhichareofdirectrelevancetocarersandolder young carersandwhich
helpensurecarershaveapivotalroleindecision-making.Inparticular:
• Carers will provide feedback on their experiences of healthcare. The Scottish Government is considering how to capture the experiences of carers; and
• The measure on emergency admissions, relating to supporting patients to remain at home, will reflect improved partnership working with carers.
7.8 Carerinvolvementandparticipationinprocurement processesisessentialto
empowercarers,andtoensurethatservicesproperlytakeaccountofcarers’needs.
7.9 TheScottishGovernmentexpectstoreportontheconsultationonDraft
GuidanceonSocialCareProcurementinsummer2010.TheDraftGuidancesetsout
aframeworkforsocialcareprocurementinScotlandwhichhasasignificantimpact
onpeople’squalityoflifeandwellbeing.
21 http://www.scotland.gov.uk/Publications/2010/05/10102307/8
51 Caring Together
7.10 Localauthorities’commissioningstrategiesshouldsetoutthefutureresponse
tomeetingneedsandimprovingoutcomesandtheplansformajorshifts,suchas
movingcontrolfromorganisationstoindividualsandmovingfrominstitutional/
buildings-basedservicestocommunitysupport,wherethatisappropriate.
7.11 Localauthoritiesshouldadoptaninclusiveapproachandcreatean
environmentwhichinvolvesstakeholders,includingserviceusers,theiradvocates,
carers,serviceprovidersandthosewithastatutoryresponsibilityforservicedelivery,
workingtogethertoimproveoutcomesforserviceusersandcarers.
7.12 Procurementprocesseshave,insomecases,givenserviceusersandcarers
asensethattheyhavelittlecontrolovertheirlivesandnoabilitytoimpactonthe
decisionsmadeinrespectoftheirservices.
7.13 Theinvolvementofserviceusersandcarers,andtheopportunityforthem
tovoicetheirexperiencesandviews,isessentialateverymainstageofthe
procurementprocess,fromtheearlieststagesofanalysisandplanningtothelater
stagesofcontractmonitoring,managementandreview.Serviceusersandtheir
carersmayhaveanopiniononchangestocurrentserviceprovision,mayhave
concernsaboutanexistingproviderwhichmeritachangeofprovider,ormaywant
tosupportthecontinuationofaserviceprovidedbythelocalauthorityorvoluntary
orprivatesector.
ACTION POINT 7.4In 2010 and beyond, the Scottish Government and COSLA will promote the Social Care Procurement Guidance to local authorities so that they are aware of that part of the guidance on carer participation and can act on it as appropriate. Furthermore, the Scottish Government will provide training for procurement staff, establish learning networks and promote good practice to continue to seek improvement in procurement practices across Scotland, which will take account of the need to involve carers.
7.14 Carersshouldbeinvolved,asappropriate,inthecareplansforthepeoplethey
carefor.Forexample,withregardtocarerswhocareforpeoplewithmentalhealth
problems,psychiatricservicesneedtoensurethattheyinvolvethecarerasmuchas
possibleinthecareandtreatmentplansothatthecarercanbefullysupportedand
engaged.Thiscanbeadifficultareaforallconcernediftheadultrefusestogive
consenttosharepersonalinformationwithcarers,asistheirlegalright.Inthese
circumstances,professionalsmustrespecttheneedforprofessionalconfidentiality,
whilstmaintaininganopenprofessionalrelationshipwithcarersasinterestedparties.
Chapter5Carers’RightsChapter8IdentificationofCarers
53 Caring Together
The purpose of this chapter is to set out the measures to take forward effective carer identification by ensuring that the health and social care workforce have the necessary skills. Self-identification is also important. Identification is the precursor to a carer’s assessment and to receipt of support. Appendix 8 sets out a carer pathway from carer identification or self-identification through to support.
8.1 Thereareanumberofdifferentwaystoidentifycarers.Differentmodels
havebeentriedandtestedandtwolessonshaveemergedasthemosteffective
wayofidentifyingcarers:
• itiswidelyrecognisedthatpractitionersintheNHSandsocialcare
professionsarebestplacedtoidentifycarersthroughtheircontactwith
patientsandtheirfamilies;and
• integratingcareridentificationintothecoreprofessionalroleofhealth
andsocialcareprofessionalssupportseffectivecareridentificationand
signpostingtosupport.
8.2 Onceidentified,acarermaynotwanttobeover-burdenedwithinformation.
Astheircaringrolechanges,theymayrequireacertainlevelordifferenttypeof
information.Mentalhealthcarerstellusthatmanyofthemneedinformationat
thepre-diagnosisstage,especiallyiftheirrelativeseemstohavesevereproblems
anderraticbehaviour,butwherethereisnodiagnosisasyet.
8.3 Itisimportanttokeepafocusoncareridentification,asthisisthefirst
importantsteptohavingacarer’sassessmentandalsotoaccessingappropriate
supporttomeetcarers’needs.Aspartofthis,there needs to be a continued emphasis on carer identification within GP practices and in hospital and other settings.PerthCarersCentresaid:
“Usually when someone cares for someone with a long-term condition, the care
professionals are maintaining the cared-for person and they do not always offer
the carer support automatically - this is changing as they are more aware of the
needs of carers through networking meetings, conferences being held and so on.
Also staff working in the GP practices and raising the profile of our carers centre
enables these people to come forward for support and for health care staff to
recognise carers centre staff and how they provide carers with support.”22
22PRTCCarerCentreSurvey,2010
54 Chapter8 pp.52-56
8.4 CarerswereincludedinTheScottishEnhancedServicesProgrammefor
PrimaryandCommunityCare(2007-2009).ThisprogrammewillcontinueuntilApril
2011.Theenhancedservicesaremaximisingtheopportunitiestoidentifycarers
throughtheworkofgeneralpracticeandbyunderstandingthecarers’roleandits
associatedrisks.Thisenablesthepracticeteamtosupportcarersintheircaringrole
andtohelpcarersprotecttheirownhealth.GPpracticesprovidingtheseservices
areexpectedtoestablishastructuretosupporttheoverallneedsofpatientswho
arecarers.
8.5 NHSBoardshavedevelopedstrategiestoidentifycarersandmanyaredoing
so.For example, in South Lanarkshire a Primary Care Co-ordinator works with the 55 GP practices to identify and support carers. A Blood Borne Virus Support Worker identifies BME carers, some of whom are affected by BBV. A GP Liaison Worker in NHS Borders works with GPs to help identify carers.
The Scottish Government expects NHS Boards to maintain a focus on carer identification through the Carer Information Strategies.
8.6 The Princess Royal Trust for Carers has taken forward the Moffat Programme, sponsored by the Moffat Charitable Trust, with four NHS Boards – NHS Lothian, NHS Greater Glasgow and Clyde, NHS Ayrshire and Arran and NHS Borders. The main aim of the Moffat Programme is to promote early identification, intervention and support for carers to prevent unnecessary crisis, including a breakdown in carers’ own health.
8.7 Carers Scotland is continuing to work with GPs and other primary health care personnel to raise awareness of carers, to help staff identify carers and to help carers self-identify. They have produced a resource pack for GP practices which provides a range of tools and a notice board. Carers centres across Scotland are working with GP practices too.
8.8 Theworkforcetraininginitiativesetoutinchapter14oncarerandworkforce
trainingwillhelppromotecareridentification.Theemphasisontrainingsocialcare
staffintheundertakingofcarers’assessmentssetoutinchapter9willbecriticalto
thisprocess.
8.9 ThereisscopefortheScottishGovernmenttoworkwithAlcoholandDrug
Partnerships(ADPs)andwiththenewScottishDrugsRecoveryConsortium(SDRC)
topromotetheneedfortheidentificationof,andsupportto,carersofpeoplewith
55 Caring Together
substancemisuseproblems.TheScottishGovernmentexpectsADPstoengage
withallrelevantaspectsofcommunityplanningtohelpsecurethebestoutcomes
bothforpeoplewithaddictionproblemsandfortheircarersandfamilies.TheSDRC
willbeworkingcloselywithADPsbyassistingserviceusergroups,familysupport
networksandlocalcommunities.Carersofpeoplewithdrugandalcoholproblems
canmakeanimportantcontributiontotherecoveryofthepeopletheyarecaring
for,andthewelfareofcarersisanimportantpartofthisagenda.
ACTION POINT 8.1From 2010 onwards, the Scottish Government will promote this strategy with Alcohol and Drug Partnerships (ADPs) and with the Scottish Drugs Recovery Consortium (SDRC) and will work with ADPs and with the SDRC to help identify and support carers of people with substance misuse problems.
8.10 TheRoyalCollegeofGeneralPractitionersScotland(RCGPS)hasdecidedto
makecarerandyoung careridentificationandsupportoneofitskeyprioritiesin
2010-11throughitsPatientPartnershipinPractice(P3)group.Thismeansthatthe
RCGPSworkingwithothers,willdevelopguidanceforGPpracticesinScotlandon
careridentificationandsupport.
8.11 Inaddition,theRCGPS,inpartnershipwiththePrincessRoyalTrustfor
Carers,islaunchingaUK-wideAwardtorecognisetheexcellentworkofGPpractices
inidentifyingandsupportingcarers.TheseawardswillbepresentedinthefourUK
countries,withanoverallwinnerreceivingtheUKAwardlaterin2010.
ACTION POINT 8.2The Scottish Government will approach all relevant national training and qualification accreditation bodies to agree how they could integrate carer identification and awareness into the curriculum by 2013.
ACTION POINT 8.3In 2011-12 and beyond, local authorities, Health Boards and all carer support organisations are to identify carers and young carers in the hard to reach groups, including BME carers.
ACTION POINT 8.4In 2010-11, the Scottish Government will work with the Royal College of General Practitioners Scotland on its plans to provide guidance to GP practices in Scotland on carer and young carer identification and support.
56 Chapter8 pp.52-56
8.12 Peoplecanidentifythemselvesascarers(self-identification).However,that
isnotstraightforward.Thereisawidespreadviewthatcaringfororlookingafter
someone,particularlyafamilymember,is‘whatyoudo.’
8.13 Itcanalsobedifficulttodeterminewhen‘thecaringjourney’starts,
depending,forexample,ontheconditionofthewould-becarer’srelativeorpartner,
whomayinitiallykeepquitegoodhealth.Aspeoplebecomeolder,frailer,sicker,
and/orincreasinglydisabled,becomeaddictedtoalcoholand/orillegaldrugsor
haveadiagnosedmentalhealthproblem,theroleofcarerbecomesmoreapparent.
“My sister constantly told me that I was a carer and that I should ask for help
and for a long time I ignored her. I didn’t think of myself as a carer and
despite many visits to the GP and workers coming to see mum at home, no one
had ever spoken to me about getting support for myself, so that reinforced my
view that I couldn’t get help.”
Eileen,whocaresforhermother,whohasacombinationofmedicalneeds
andisalsofrail.
8.14 Manypeoplewhosupportfamilymemberswithmentalhealthproblemsor
drugoralcoholaddictiondonotseektoidentifythemselvesascarersasthereisstill
astigmaattachedtothisrole.Inaddition,thepersonwithcareneedsmaydeny
thattheyneedoraregettingsupportfromafamilymemberorpartner.
8.15 Therearehard-to-reachorhiddencarers,includingBMEandLGBTcarers.For
BMEcarers,problemsoflanguageandcommunicationmaymakeselfidentification
moredifficult.Professionalattitudesandbeliefssuchas‘theylookaftertheirown’
canalsoimpactonhowBMEcarersareidentifiedbypractitioners.
Chapter5Carers’RightsChapter9CarersAssessments(CarerSupportPlans)
58 Chapter9 pp.57-60
The purpose of this chapter is to set out what the Scottish Government, local authorities and Health Boards need to do to improve the uptake and quality of carers assessments. These assessments can be called carer support plans, terminology which will enhance their accessibility to carers and reinforce the participatory and collaborative approach. All partners need to respond proactively to the concern that carers are often critical of their experience of professionals as assessors and gatekeepers to services. Carers want to have more control over the services developed and delivered to the person they care for, and over support for themselves.
9.1 Carerswhoprovidesubstantialandregularcarehaveastatutoryrightto
assessment.23Thestrategyrecognisesthatthereneedstobeimproveduptakeand
deliveryofqualityassessments.Inaddition,thosecarerswhoarenoteligiblefora
carer’sassessmentshould,asfaraspossible,beprovidedwithinformation,advice
andpointerstowardsavailablecommunitysupports.
9.2 TheScottishGovernment,localauthoritiesandHealthBoardsneedto:
• beproactiveinensuringthatcarersknowabouttherighttorequesta
carer’sassessmentandthatup-to-dateinformationoncarers’supportis
available;
• articulateandpromotethevalueandbenefitsofacarer’sassessments;
• developawiderunderstandingoftheneedforthecarer’sassessment,
anditsreachinconsideringallaspectsofcarers’lives;
• increaseaccesstocarersassessmentsandmonitortheup-take;
• ensurethatthereisanoutcomes-basedapproachwhichdoesnot
shoehornpeopleintoexistingservicesifthoseservicesarenotsuitable;
and
• ensurethatassessedneedsaremetandtheimpactandoutcomes
monitored.
9.3 Everypersonwhoisentitledtorequestanassessmentoftheirabilitytocare,
andwhowantsanassessment,shouldhaveacomprehensiveassessmentcarried
outquicklyafterrequestingtheassessment.Theassessmentshouldbereviewed
systematicallytotakeaccountofchangingcircumstancesaffectingthecarer,
cared-forpersonandotherrelevantpeople.Theassessmentshouldcovertheneed
foremergencyplanningsocarershaveaplantocoveremergencysituations.Those
23 UndertheSocialWork(Scotland)Act1968,asamendedbytheCommunityCareandHealth(Scotland)Act2002,carerswhoprovide“asubstantialamountofcareonaregularbasis”areentitledtoanassessment.
59 Caring Together
carryingouttheassessmentshouldbeknowledgeableabouttheavailabilityof
supportstothecarerandservicesforthecared-forandotherrelevantpeople.The
carershouldhaveanamedpersontheycancontactfollowingonfromthecarer’s
assessment.Carerscentreshaveakeyroleinpromotingtheassessmentandin
helpingcarerstomakethemostoftheprocess.
9.4 Theoutcomesapproachtocommunitycareseekstoembeduserandcarer
experienceattheheartofallcommunitycareservicesandsupport.Oneofitskey
principlesisdirectengagementwithpeopleusingthoseservicesandtheircarers
throughtheTalking Pointsapproachtoassessment,careplanningandreview.
9.5 TheScottishGovernment’sreviewofTalking Pointstodateshowsthatmany
frontlinepractitionersareenthusiasticexponentsoftheapproach.However,there
isgreaterresistanceamongstmiddlemanagers,whoareconcernedaboutraising
carers’expectations,thetimecommitmentrequiredforthedevelopmentofcare
plans,theneedforcontinuousreviewofthecareplans,lackofservicestosignpost
carersontoandlackofresources.Thesearelegitimateconcerns.
9.6 Nevertheless,investingtimeinthecarer’sassessmentwillreapbenefits.
Thosecarryingoutthecarer’sassessmentandtheirmanagersneedtobefully
awareoftherangeofexistingservicesinlocalareasandtohavetheabilitytotake
forwardpersonalisedandflexibleapproachestomeettheneedsofthecarer.A
stagedapproachtomeetingcarers’needsmightbeappropriate,andifthisisthe
caseitshouldbefullyexplainedtothecarer,withthecarergiventheopportunityto
comment.
9.7 ThereisguidanceonthetraininganddevelopmentofstaffontheScottish
Government’sJointImprovementTeamwebsiteat:
http://www.jitscotland.org.uk/action-areas/talking-points-user-and-carer-
involvement/staff-development-materials/
9.8 ThepreviousScottishExecutiveissuedGuidanceonSections8-12ofthe
CommunityCareandHealth(Scotland)Act2002(ScottishExecutiveCircularCCD
2/2003).Theguidancecovered,amongstotherissues,informingcarersoftheir
righttoassessmentandtheassessmentofcarers.Itisstillrelevant,butwecould
usefullycomplementitwithpracticalguidancetoundertakingcarersassessments.
60 Chapter9 pp.57-60
9.9 Glasgow City Council has developed self-assessment for carers in partnership with a wide range of statutory and voluntary agencies. Edinburgh City Council has developed a new carers assessment tool based on effective partnership working between the statutory and voluntary sectors. It is outcomes focused and meets the national minimum information standards. This is an electronic tool hosted on the single shared assessment platform, eAssess.
9.10 Those carrying out assessments and their managers must recognise that there are wider resources across a range of agencies, and the wider public sector, which can support carers following an assessment. With a wider focus, the assessment can lead to carers being signposted to services other than those traditionally within the remit of social services.
9.11 However,theassessmentprocessalsopresentsanopportunitytodocument
whereresources,supportsorservicesarenotavailable.Assessorscoulddothisto
assistwithstrategicplanning.Itwouldhelptoidentifyunmetneed.
ACTION POINT 9.1On an ongoing basis, in order to fully engage carers and deliver improved outcomes for carers, the Scottish Government will continue to promote and monitor the use of carer outcome evaluations through Talking Points.
ACTION POINT 9.2On an ongoing basis, in order to improve the knowledge and skills of the social care and health workforce in undertaking carers assessments, the Scottish Government, in partnership with local authorities, will continue to encourage and promote the further training and development of staff. (Also refer to chapter 14 on training).
ACTION POINT 9.3In order to improve the carrying out of carers assessments with the aim of delivering improved carer support, the Scottish Government will, by 2012, commission the production of practical guidance on the undertaking of carers assessments. This will include guidance on how to conduct culturally competent assessments. This will be done in partnership with COSLA and NHSScotland and will be informed by stakeholders and carers.
ACTION POINT 9.4On an ongoing basis, local authorities will monitor the impact and outcomes of carers assessments. If any resources, supports and services are not available to meet need, local authorities will use the carer assessment process (and other initiatives) to record what is currently unavailable. This will assist strategic planning with respect to carers’ support.
Chapter5Carers’RightsChapter10RangeandTypeofSupport
62 Chapter10 pp.61-65
The purpose of this chapter is to act as a link to the subsequent chapters on the range and type of personalised support to be made available to carers. The key issues raised at engagement events with stakeholders are set out here.
10.1 Thecarer’sassessment/carersupportplanshouldbethegatewaytosupport
andservices.However,carerswhodonothaveacarer’sassessment/planshould
alsobeabletoaccesssupportevenifthecarer’sassessmentisthepreferredroute
tosupport.
10.2 Therearemanyformsofsupportavailabletocarersoverandabovethat
provided,insomecases,byotherfamilymembers,friendsandneighbours.Carers
whoarenewtocaringoftensaythatthepriorityforthemistohaveinformation
and adviceabouttheconditionorillnessofthepersontheyarecaringfor.They
mayrequireadifferenttypeofinformationastheillnessorconditionchanges.
10.3 Inthedeliveryofsupport,itisimportanttotakeintoaccountthataperson’s
caringsituationcanchangequitedramatically,eveninashortspaceoftime.
Peoplecancontinuetobecarers,inadifferentway,forexample,whentheperson
theyarecaringformovesontoindependentlivingorintoacarehome.Caring
atend-of-lifeisparticularlydifficultandthecarermayneedsupportaftertheir
relativedies.
“I felt alone and in the dark when mum died. I loved caring for mum. But a
carer’s life starts to move on when their caring journey ends. I have now found
my own identity as this can be lost when caring. My carers’ centre supported me
to see the light. I am carrying on using my voice and experience in supporting
carers.”
Rosemary,whocaredforhermotherwithdementia.Rosemary’smother
sadlydiedinFebruary2010.
10.4 Carersfrequentlyreportthedifficultiestheyencounterandthebarriersthey
faceintheirday-to-daycaringrole.Somesaytheyhavebenefitedfromsupport
whichisthenwithdrawnorthatthereisadisjointedapproachtothedeliveryof
supportfromdifferentprofessionals.Carersthemselvesoftenhavetousetheir
limitedandprecioustimeandenergytofacilitatetheconnectionstobemade
amongstthevariousprofessionals.
63 Caring Together
“Our daughter has complex health and developmental needs. We had to come
to terms with the fact that life was going to be very different for her and for us
as a family. Services became disjointed when she was four years old. Getting
assessment and support was an uphill struggle. We co-ordinate our daughter’s
support and we want the disjointed approach to end. The battle is exhausting
for both sides.”
BrettandMaggie,whocarefortheiryoungdaughterwithararegenetic
syndrome(CorneliadeLangeSyndrome).
10.5 Carersoftenexperiencedisjointedapproachesandalackofjointworking
attimesoftransitionforexample,whentheirchildwithalearningdisabilityleaves
nurseryorschool.Thetransitionfromchildren’stoadultsocialcareservicescanbe
particularlytraumatic.Somecarershavedescribedthislike“fallingofftheendofa
cliff.”
“Planning for transition can be spectacularly pointless if there is no
follow-through. A multi-disciplinary group agreed that all of my daughter’s
support should continue as her needs would not change. But after transition to
adult services, nothing continued and I was left to start things up again as
best I could.”
Anne,aloneparentwhocaresforheradultdaughterwithprofound
learningdisabilitiesandwhoisphysicallydependent.
10.6 Equally,changecanbemanagedwell.Anne,above,alsosaid:
“The move into supported accommodation was managed very well. I was
consulted about my daughter’s care plan and social activities, equipment and
furnishings. We met her flat mate and new care workers well before the move.
A difficult and anxious time was made less so by a sensitive response to my
concerns and a clear and continuing commitment to my daughter’s wellbeing.”
Anne.
10.7 Early diagnosisofacondition,syndromeorillnesshelpswould-becarersto
accessinformationandadviceattheearliestopportunity.Forexample,theScottish
Government’scontinuingnationalhealthtargetonimprovingearlydiagnosisof
dementiarecognisesthatthisiskeytothosewithdementiaandtheircarersin
accessingthegatewaytoearlypost-diagnosticsupport.
64 Chapter10 pp.61-65
10.8 Caringcanimpactheavilyonacarer’sphysicaland/ormentalhealthand
wellbeing.Accesstoemotional supportthroughacarerscentreorprovidedbya
condition-specificorganisationorthroughtheGPcanhelp.Somecarersneedmore
intensiveinterventionssuchascounselling.
10.9 Goodadviceandperson-centredtrainingonmoving and handlingcanhelp
withthephysical aspects of caring.Sotoocanhavingtherightservicesinplace
forthecared-forpersontolessenthephysicalburden,whichcansometimesbe
extreme.
10.10 Manycarersbenefitfromshort breaks or respite.Thisislinkedto
emergency planning–arapidresponseservice–whenthereisaneedforsuch
aservice.Carersshouldbesupportedinproactiveplanningforemergenciesand
unexpectedevents.
10.11 Carer trainingisimportant.Ifcarershaveaccesstogoodqualitytraining,
theyarebetterequippedtodealwithmanydifferentaspectsofcaringandto
continueintheircaringrole.
10.12 Housingandhousingsupportisanimportantissueforsomecarers,
especiallyinensuringtheyhavetherighttypeofaccommodationtosuittheneeds
ofthefamily.Accesstotherightequipment and adaptationswhenneededis
necessary.
10.13 Accesstotelecare servicesforthecared-forpersoncanalsoprovidepeaceof
mind,reducestressandlessenthephysicalaspectsofcaring.
10.14 Somecarers,especiallythemostvulnerable,benefitfromindependent
advocacy supporttohelptheminmanydifferentways,includingsupportingthem
intheirdealingswithhealthandsocialcareandotherprofessionals.
10.15 Manycarerswantsupporttoremaininwork asworkprovidesanincomeand
itiswhatpeoplegenerallydo,orwanttodo.Otherswanttoaccesswork,trainingor
FurtherorHigherEducation.Othercarerswhocannotworkduetoageand/orlevel
ofcaringresponsibilitywouldlikesupporttohaveagood standard of livingand
notexperiencefinancialchallengesduedirectlytothecostsofcaring.
65 Caring Together
10.16 Carers want to have an identity beyond caring which can be found in employment, volunteering and leisure opportunities.
10.17Carersappreciatethesupportprovidedbycarers centresandbyawiderange
ofvoluntaryorganisationsandoftensaytheywouldlikethemtobebetterfunded
andresourced.The sustainability of these services and ability to cope with an increasing demand is an important issue, and one which should be addressed by funding provided, where possible, by local authorities, Health Boards and others.
Chapter5Carers’RightsChapter11InformationandAdvice
67 Caring Together
The purpose of this chapter is to show why it is important for carers to have the right information and advice at the right time and to set out actions to improve provision in this area.
11.1 Carersfrequentlysaythattheywouldliketherighttypeofinformationat
therighttime,dependingontheirparticularcircumstances.Theyalsowant
up-to-dateinformation,assometimestheyareprovidedwithinformationon
servicesthatisout-of-date.Specialisthealthprofessionalscanplayanimportant
roleinprovidingcondition-specificinformationthatcanhelpcarerstounderstand
anddealwithdifficultorchallengingsymptoms.
11.2 Carersoftenneedassistancetonavigateinandaroundbothstatutoryand
nonstatutoryservicesandorganisations.
“I would like to urge other carers to get support for themselves although it was
years before I realised I was a ‘carer.’ Never be discouraged or disheartened. If
you’re determined and look ahead, there is help and plenty of information out
there. I have found that the National Schizophrenia Fellowship (Scotland) has
been a great support and I would urge others to pluck up the courage to go to a
carers’ group.”
Thispersoncaresforhersonwithschizophrenia.
11.3 The national carer organisations and other organisations, including condition-specific organisations, provide a lot of information for carers through their publications and websites. Local carers centres have a crucial role in providing a wide range of comprehensive information and advice, including carer information packs tailored to different caring situations, benefits advice and advice on health and wellbeing.
11.4 Moreover, many other Third Sector organisations such as Alzheimer Scotland, Chest Heart and Stroke Scotland, the Stroke Association and the Parkinson’s Disease Society are providing a wide range of information and advice to carers. MECOPP (Minority Ethnic Carers of Older People’s Project) is the lead agency for the joint NHS 24, Health Scotland and NES website ‘Health in my Language’ which offers patients and carers access to information in community languages.
68 Chapter11 pp.66-69
11.5 Itisnecessarytomaintainafocusontheprovisionoftimely,accurateand
goodqualityinformationandadvicenotonlywhensomeoneisnewtocaringbut
alsowheneverinformationandadviceisneeded.Wehavealreadydiscussedthe
roleofhealthcareandsocialcareprofessionalsinidentifyingandsupportingcarers
andhavesetoutactionsinpreviouschapters.Theseprofessionalshaveakeyrole
tooinprovidinginformationandadvice.
11.6 Moreover,theCarers Information ZonebeingestablishedbyNHS inform
willhaveanimportantroleinprovidinginformationtocarers.
11.7 Thiszone,whichisdrivenbytheneedsofcarers,will:
• provideacentralaccessibleonlineresourceofspecificinformationfor
carers,rangingfrompracticalsupportforlookingaftersomeoneto
caringfortheirownhealthandwellbeing;and
• signpostcarerstothemostappropriatesourceforfurtherinformation,
supportandguidance.
ACTION POINT 11.1In 2010, the Scottish Government will continue to work with NHS inform on the development of its Carer Information Zone. Once fully developed, NHS inform will continually review the online service to ensure that it remains up-to-date, accurate and relevant to carers’ and young carers’ needs.
11.8 TheScottishGovernmentlaunchedCare Information Scotland (CIS)earlier
thisyear.Thisservice,managedbyNHS24,consistsofawebsiteserviceand
confidentialtelephonehelpline,24providingcomprehensiveup-to-dateinformation
onallaspectsofcommunitycareforolderpeople.CIScoversissuessuchas:howto
getacareneedsassessment;careoptions,includingcareathomeandcarehomes;
andhowmuchcarecosts.CISalsoprovidesinformationonlocalservicesandhow
toaccessthem,andlinkstoadviceandsupportservices.Thereisa‘Supportfor
Carers’sectioninthewebsite,providinggeneralinformationandcontactdetailsfor
localservicesandsupportorganisations.
11.9 CISisavailabletoallandismainlybeingusedbythefriends,familyand
carersofolderpeople.Carersareadvisedofthehelpavailabletothem,inaddition
tothepossibleserviceoptionsforthosetheycarefor.
24 Thehelplinenumberis:08456001001andthewebsiteaddressiswww.careinfoscotland.co.uk.
69 Caring Together
11.10 AsNHS24operatestheCISandwillruntheCarersInformationZoneinNHS
inform,theappropriatelinksareinplace.BothCISandNHSinformarenewand
willneedtofirmlyestablishtheoperationoftheircoreservicesbeforeconsidering
developments.Thepotentialforextendingtheservicesinordertoprovidea
comprehensivehelplineforallcarerswillbeconsidered,alongwithpossible
alternativeoptions.
ACTION POINT 11.2By December 2011, the Scottish Government will gather and review the available evidence and scope the potential for a Scotland-wide carers’ helpline and the options for providing it, including extending the service for carers offered by Care Information Scotland.
11.11 ManycarerssaythattoreceiveinformationfromGPsandotherhealthcare
staffontheconditionofthepersontheycareforwouldhelpthemintheircaring
role.Theybelievethattheywouldbebetterequippedtocarefortheirrelativeif,for
example,theGPinvolvedthemintheconsultationorappointmentwiththe
cared-forperson.
11.12 Familymembersdohavetherighttobeinvolvedindecisionsabout
thehealthcareofpeoplewholackcapacity,balancingthepatient’srightto
confidentialitywiththeprincipleofcarerinvolvement.Thereareanumberofuseful
sourcesofinformationonthisimportantethicalissue,afewofwhicharelisted
below.25
11.13 Withregardtopatientswhodonotlackcapacity,orwhodonothave
amentaldisorder,orwhoarenotachild,thereareethicalissuesaboutcarer
involvementandtherightofthepatienttoconfidentiality.Nooneelsecanmake
adecisiononbehalfofanadultwhohascapacity. However, it is good practice for a GP or other healthcare professional to check whether a patient needs any additional support to understand information, to communicate their wishes or to make a decision. This may include support from a relative, partner or carer or another person close to them. There is evidence to suggest that when carers are provided with appropriate information and engaged in the care planning, the outcomes for the patient and carer are enhanced. The overriding principle is the need to consider the best interests of the patient and carer.25 http://www.rcpsych.ac.uk/PDF/Carersandconfidentiality.pdf http://www.bma.org.uk/healthcare_policy/community_care/Workingwithcarers.jsp http://www.gmc-uk.org/guidance/ethical_guidance/confidentiality_64_66_sharing_information.asp http://www.gmc-uk.org/guidance/good_medical_practice/relationships_with_patients_people.asp, http://www.bma.org.uk/images/confidentialitytoolkitdec2009_tcm41-193140.pdf
Chapter5Carers’RightsChapter12CarerHealthandWellbeing
71 Caring Together
The purpose of this chapter is to set out the issues about the emotional impact of caring and the physical demands, both of which can impact adversely on carers’ health. The aim is to prevent a deterioration in health as a result of caring and to promote good health, recognising that carers – like anyone else - can experience poor health unconnected with caring. Carers’ health can be protected if the range of support discussed in this strategy is delivered according to individual needs. Even a sensitive and supportive carer’s assessment/carer support plan can reduce stress and anxiety. This chapter also sets out plans for health checks for eligible carers.
12.1 The emotional impact of caring for a relative or friend can be immense.Caring,forexample,forapartnerorrelativewithdementiaorotherneurological
conditions,orwithaseveredisabilityorlong-termorfluctuatingcondition,orfora
childwithspecialneeds,canoftenaffectacarer’semotionalwellbeingmorethan
theirphysicalhealth.
12.2 Themajorhealthconcernsarerelatedtostress,anxiety,emotional
healthandwellbeinggenerallyandthephysicalstrainsofcaring,especiallyback
problemsthroughliftingandhandling.Earlyidentificationandsupportofcarers
hasapositiveimpactontheiroverallhealth.Agoodserviceresponsetochanged
circumstancesincaringisalsobeneficialtocarers’health.
12.3 Manycarersareconcernedthattheycannotaffordtobeill,andsomefeel
unabletocontinuewiththeircaringrole.Carerswhodosaytheyareabletocope
oftenraiseconcernsaboutincreasingageandtheirownpersonalhealthproblems.
12.4 Carerscanbecomesociallyisolatedandgrounddownbytryingtoget
servicesinplaceforthepersontheycarefor.Moreover,disability,illness,and
long-termconditionsoftenchangefamilyrelationships. Being a life-long or long-term carer is challenging.Asacaringroleintensifies,manycarersreport
howpreviousmarital,partnerorparentalrelationshipschangeintopatient-nurse
relationships.Therecanbestrongfeelingsofguiltand/orangerandaninabilityto
copeattimes.
12.5 Carerscentresprovidecarerandpeersupportgroupswithinasafe,listening
environment.Thisisextremelyvaluabletomanycarers.Withtheincreaseinmore
intensiveandlong-lastingcaringsituations,thereissomeadditionaldemandfor
professionaltherapeuticandcounsellingservices.
72 Chapter12 pp.70-75
12.6 Theservicesandresourcesinplacetothegeneralpopulationsuchas
Breathing SpaceandSteps for Stressareavailabletocarers.Inaddition,the
ScottishGovernment,withpartners,willproduceabespokeresourceforcarerson
stressandcaring.Weacknowledgeindoingsothatsomepeoplewillnotrecognise
themselvesascarersandmaythereforeuseSteps for Stressonly.
12.7 ThenewWellness Recovery Action Planning (WRAP)promotedbythe
ScottishRecoveryNetwork,whoarefundedbytheScottishGovernment,isamodel
withpotentialtohelpimprovethementalhealthandwellbeingofthegeneral
population,includingcarers.TheGovernmentwillworkwithpartnerstoexplorethis
further.
12.8 TheScottishGovernmentisworkingcloselywithNHSBoardsandothersto
expandandimproveaccesstopsychological therapiesforpeopleofallages,as
analternativetodrugtreatments.Thiswillbenefitcarerswhoneedthistypeof
supportandwhoareconcernedaboutthewaitingtimesforsuchservices.Thereisa
specificcommitmenttoenhancecapacityandtotraincurrentNHSstafftodelivera
rangeofevidence-basedinterventions.
12.9 In 2010-11, the Scottish Government is developing an access target for psychological therapies (relevant to carers as part of the general population) which will complement the existing access target for those assessed as needing specialist support through the Child and Adolescent Mental Health Services (CAMHS).
12.10 There are other innovative approaches being taken forward at local level, such as the Carers’ Counselling and Groupwork Service developed by the Voice of Carers Across Lothian (VOCAL).
12.11 Information prescriptionisbeingtakenforwardinsomeareasinScotland.
Approvedinformation(forexample,books,DVDs,CDsandwebsites)canbe
‘prescribed’topatientsandcarerstoenablethemtolearnmoreaboutthedifferent
aspectsofaconditionanditstreatment,personalandemotionalhealth,dealing
withstress,dietandsoon.Theseinitiativesshouldensurethatmaterialsare
availablethroughawiderangeofdistributionpoints,includinglibrariesandcarer
supportcentres.
73 Caring Together
ACTION POINT 12.1In 2011-12, the Scottish Government will continue to provide and raise awareness amongst both professionals and the general public (including carers) of Breathing Space. The Steps for Stress booklet will be available, on request.
ACTION POINT 12.2The Scottish Government with partners, including Health Scotland and the national carer organisations, will produce a bespoke resource on issues relating to stress and caring, building on Carers Scotland publication, Finding the Balance: Promoting Good Health – A Carers’ Resource Guide to Health and Wellbeing26and linking in to the NHS informCarers Information Zone and to Steps for Stress.The resource will be widely disseminated.
12.12 Thephysical demands of caringcanbeimmense,leadingtoexhaustionand
havinganimpactonemotionalwellbeing.Thisisespeciallysowhereboththecarer
andcared-forareelderly,orwherethecareriscaringforsomeonerequiringalotof
movingandhandlingduetolimitedornomobility.
12.13 Itisimportantforcarerswhoareableandwilling,tohavetrainingon
movingandhandlingandonthesafeuseofequipment.Ifthisiscarriedoutinthe
homethenthetrainingismuchmoreeffective.
12.14 ThroughNHSBoardCarerInformationStrategiessomeBoardshave
undertakentrainingonmovingandhandling.
12.15 TheScottishGovernmentwillpromotethebenefitsoftheseasonalflu
vaccinetocarers.Itisimportantforcarerstoprotectboththemselvesandthe
peopletheycareforfromtheeffectsofseasonalflu.
ACTION POINT 12.3In 2010-11, the Scottish Government will encourage NHS Boards, Community Health Partnerships and local authorities to introduce programmes of training for carers on person-centred moving and handling and on the safe use of equipment. This should be linked to an assessment at the point of hospital discharge planning.
26 http://www.carersscotland.org/Information/Takingcareofyourself/NewHealthResourceGuideforCarers
74 Chapter12 pp.70-75
ACTION POINT 12.4From 2010 onwards, the Scottish Government will promote to carers the benefits of the seasonal flu vaccine to help protect themselves and the people they care for.
12.16 High-riskprimarypreventiontargetedonhealthinequalitiesissupported
throughtheKeep Well and Well North programmes.Theseweredevelopedto
tacklehealthinequalitiesthroughincreasedinvestmentinprimarycare.The
programmehasbeentargetedatthoseaged45-64livinginthemostdeprived15%
ofareasaccordingtotheScottishIndexofMultipleDeprivation(SIMD),andalsoat
othersatriskwhowouldnotbeidentifiedthroughthisapproach.Theintervention
involves:
• identifyingandengagingwiththosepeopleatparticularriskof
preventableseriousill-health(includingthosewithundetectedchronic
disease);
• givingthesepeopleaholistichealthcheck,whichfocusesonriskfactors
forcardiovasculardiseaseanddiabetes;
• offeringappropriateinterventionsandservices;and
• providingmonitoringandfollow-up.
12.17Thecurrenttargetpopulationisaround160,000,ofwhomaround70,000
havebeenchecked.Thiswillhaveincludedcarersaged45-64livingintheareas
servedbyKeepWell.
12.18Itisnotknownhowmanycarershavecomeforwardforthehealthchecks
intheKeepWellareas.However,NHS Scotland is updating its training for practitioners in the Keep Well areas, and that will include training on carer awareness and support.
12.19TheScottishGovernmentisalsoconsultingontheextensionofhighrisk
primarypreventiontargetedoninequalities.Theintentiontoextendthehealth
checksincludemakingthecheckfive-yearly,extendingtoallthe15%most
deprivedareasandloweringthe‘qualifying’ageto40fromthecurrent45.Health
Boardsarealsobeingaskedtoconsiderhowtotarget,reach,assessandsupport
thoseatincreasedriskwhodonotliveinthe15%mostdeprivedareas,including
offenders,gypsytravellersandthosefromBMEcommunities.Carerswillnowbe
addedtothatlist.
75 Caring Together
12.20TheScottishGovernmentseesmeritincarersintherelevantagebracket
havingaccessto,andbeingenabledtotakeadvantageof,thesesortsofhealth
checks,wheretheyarealsoatincreasedriskofdevelopingcardiovasculardisease
anddiabetes.However,creativeandflexiblesolutionswillberequiredtofacilitate
suchcheckswhencarerscannoteasilyattendappointments.
12.21TheScottishGovernmentwillalsoconsidertheevaluation,whenavailable,of
thehealthcheckpilotsinEngland,whichareunderwayinsixdemonstrationareas.
ACTION POINT 12.5In 2010-11, the Scottish Government will work with NHS Board Chief Executives to ensure the inclusion of eligible carers (ie those aged 40-64) in the list of those to be considered in the mainstreaming of Keep Well and Well North.
Chapter5Carers’RightsChapter13ShortBreaks
77 Caring Together
The purpose of this chapter is to be clear about the importance of flexible, personalised short breaks provision, leading to better outcomes for carers and the people they care for. We set out actions in support of the further development and sustainability of short breaks, including the allocation of a £1 million grant to the voluntary sector.
13.1 Theterms ‘short break’ and ‘respite’tendtobeusedinterchangeably.
Somecarersandserviceusersprefertheterm‘shortbreak’or‘breakfromcaring,’
signifyingabreakfromtheroutine.
13.2 Theterm‘respite,’ontheotherhand,canimplythe‘relieffromaburden,’
therebygivingthewrongimpressionofthecaringrelationship.Itcanalsobe
associatedwithinstitutionalformsofsupportorhospital-basedstays.
13.3 Whilstmanypeopleprefertousetheterm‘shortbreak’or‘breakfrom
caring,’theterm‘respite’shouldnotbedisregardedjustyetasthismore
traditionaltermisstillverymuchusedandrecognised.Indeed,somecarersusethe
termthemselves.
13.4 Carerssaythataccess to personalised, flexible short breaksprovisionis
crucial.Shortbreakshelptorechargebatteriesandsustaincarersintheircaring
role.Theycanbealifesaverforsome.Carerscanhavealifeoftheirownthrough
theprovisionofsuitableshortbreaks.
13.5 Manycarerswantplannedbreaksfromcaring.Carersalsoneedtobeableto
mixandmatchdifferentoptions,atdifferenttimesandfordifferentreasons.There
shouldatalltimesbeanemphasisonchoice,flexibilityandavailabilityofbreak
whenneeded.
13.6 Itisalsoimportanttorecognisethatsomegroupsofcarers,suchasBME
carers,mayhaveparticulardifficultiesinusingmainstreamshortbreakservices.
13.7 Manycarersdobenefitfromshortbreakswhichmeettheirneedsentirely.It
givesthemagood-qualitybreakfromthestressfuldemandsofsupportingsomeone
withadisabilityorlong-termconditionordementiaoranotherconditionorillness.
Itmakeslifeeasierforthecarer(andalsoforthepersonwithcareneeds).
78 Chapter13 pp.76-82
13.8 Thebreakmightbeduringthedaytimeorovernight.Thebreakmightbe
foracoupleofhoursorformuchlonger.Itmightinvolvethecared-forperson
havingabreakawayfromhome,thusbenefittingthecarerinthattheyhavetime
forthemselves.Orthecarermighthaveabreakaway,withservicesbeingputin
placetosupportthecared-forperson.Somepeoplewanttohaveabreaktogether,
withadditionalsupporttomakethishappen.Sometimestheserviceisprovided
inthehomeforthecared-forperson,withthecarerhavingtimetodosomething
themselvesforacoupleofhoursduringtheday.Thislattertypeofsupportis
providedbyCrossroadsCaringScotlandandotherorganisationsandbylocal
authorities.
“We have two kinds of short breaks for our young daughter. She goes to an
activity group once a week at Sense Scotland Touchbase and has great fun.
She has planned overnight short breaks at Quarriers Countryview which is a big
adventure for her. Both services have well-designed facilities with workers who
have the expertise to support our daughter. We found out what was on offer
ourselves and are delighted with the way things have worked out over the last
two years. Short breaks can change as she gets older but we always want them
to be enjoyable for her. We can relax knowing that she is happy.”
BrettandMaggie,whocarefortheiryoungdaughterwithararegenetic
syndrome.
13.9TheScottishGovernmentandCOSLArecognisethattherearesomeverygood
initiativesanddevelopmentsatlocallevelintheprovisionofshortbreaks.There
areexamplesofimprovedconsultationwithcarersonshortbreaksprovision,better
allocationssystemsresultinginimprovedequityofaccessbasedonassessedneed,
andtheprovisionofnewfacilities.Someshortbreaksprovisionprovidesearly
interventionandwillresultincostsavingstothehealthandsocialcaresystem.
13.10Overthelastfewyearstherehasbeenprogressbutthereneedstobemore–
theprovisionofshortbreaksishighonthelistofcarers’priorities.Itisnotpossible
toknowexactlyhowmuchneedisunmet.Thismaybedueinparttoalackof
systematicdatacollectionandanalysisofthisinformation.Butitisalsodueto
thefactthatcarerscanalreadybenefitfrombreaks,forexample,duetoadirect
paymentpaidtothecared-forperson,butwithnorequirementtorecordthebreak
provisioninanysystem.Carersmayalsobenefitfromvoluntarysectorservicessuch
asbefriendingprovidedtothecared-forperson,butagainthismightnotbeknown
tothelocalauthority.
79 Caring Together
13.11 Concernsaboutshortbreaksprovision,include:
• onlybeingofferedafew hoursshortbreakeachweek,withpeoplein
similarsituationsinotherareasbeingprovidedwithmorehours;and
• lack of accessible respite in rural areas,withtherespitehoursbeing
reducedbecauseoftimespenttravellingtotheservice;
“I was very grateful to get 3 hours per week from a care provider (Crossroads)
to look after my husband whilst I travelled a round trip of 68 miles to enjoy a
swim or a coffee and chat with a friend.”
Ann,whocaresforherhusbandwithcomplexhealthproblemsand
limitedmobility.
• lackofsuitablerespite,choiceandflexibility;
• inconsistencyintheapproachtoaneedsassessment;
• poorlymanagedservicetransitions,particularlyduringthetransition
fromchildren’stoadultservices,oftenresultinginalossofsupportata
criticaltime;
• lackofinvolvementwithcarersandserviceusersinplanningand
preparingfortheirshortbreaks;and
• concernsaboutreplacementcareintimesofemergency.
13.12 Therearemanychallengingissuesaroundtheprovisionofshortbreaks.
People,quiterightly,wouldliketobeabletoaccessavarietyofshortbreaks
provisiontosuittheirneeds.
13.13 Someprovision,forexampleresidentialandovernight,isexpensivetorun,but
somepeoplerequirethis.Verytoughdecisionsarebeingmadeatlocallevelabout
howbesttoprovideandfundshortbreaksinlightofresourcingandotherpressures.
TheScottishGovernmenttoo,inexperiencingthesepressures,stillaspirestotake
forwardtheManifestocommitmentofaminimumentitlementtorespiteforthosein
greatestneed,butwillreassessthetimescalefordelivery.Progressisbeingmadewith
theConcordatcommitmenttodeliveranadditional10,000respiteweeksby2011.
13.14 Inlightofthesechallenges,all partners need to consider how best they can support carers to have time out from caring, and develop innovative solutions based on a better understanding of people’s different needs and circumstances.Forexample,childrenwithdisabilitiescanbenefitfromparticipation
inyouthclubs,after-schoolclubs,sportsclubsandholidayactivityprogrammes.
80 Chapter13 pp.76-82
13.15 Localauthorities,withpartnersincludingNHSBoards,thevoluntarysector
andcarers,shouldusetheircombinedresourcesandexpertiseincreativewaysto
planforthedevelopmentofmoreflexible,personalisedshortbreaksprovision.
13.16 TheScottishGovernmentreceivedanumberofgoodpracticeexamplesof
innovativeshortbreaksprovisionTheseincludedtheShort Breaks Bureau operated by Falkirk Council which benefits service users and their carers with an assessed need for short breaks. This may consist of a rolling programme of short breaks in a preferred facility, occasional breaks, or emergency placement if and when required. Falkirk Council can target service user groups, for example, mental health users, to increase the uptake by this group. North Ayrshire Council runs a short break and holiday service for people with learning disabilities, complex needs, challenging behaviour, physical disabilities or autism. Theseexamplesand
othersareincludedintheseparateGoodPracticedocument.
13.17 Somecarerswhosecaringresponsibilitieshavereducedmayvolunteerby
helpingoutinanothercarer’shometogivethemabreakfromcaring.Peoplewho
havenocaringresponsibilitiesvolunteerinthiswaytoo.Thistypeofvolunteering
supportisusuallyprovidedtoafriendorrelative.
13.18 Therearealsoexamplesofvolunteerssupportingpeopletheydonotknow
initially.Thistypeofvolunteeringisusuallyfacilitatedbyorganisationssuchas
VolunteerDevelopmentScotland,CommunityServiceVolunteersandBefriending
NetworkScotland.Thelatterwilllaunchitsdementiatrainingtoolkitlaterthisyear
toenablevolunteerstotailortheirbefriendingsupporttotheneedsofthosewith
dementiaandtheircarers.
13.19 Therearedifferingviewsonwhethervolunteeringbypeoplewhoarenotthe
carers’relativeorfriend,shouldbepromotedtohelpproviderespite.Oneviewis
thatvolunteerscanusefullysupportpeoplewhodonothaveintensivecareneeds
inordertoallowthecarerabreak,whilstothersbelievethereareissuesaround
training,support,trust,disclosureandsoon.
13.20 The Scottish Government, Shared Care Scotland and others believe there is merit in exploring the volunteering options further as part of citizenship and community capacity building, and will build on the initial discussions we have had with a range of organisations.
81 Caring Together
13.21 TheScottishGovernmenthasrecentlyapprovedaPublic Social Partnership
pilotinpartofArgyllandButetosetuparespitebureauforcarersofferingamenu
ofrespiteservices.Thebureauwillcommissionadultrespitecareservicesand
provideabrokerageserviceconnectingtheneedsofcarersandserviceuserswith
themenuofrespiteservicesavailable.
13.22 Thisisoneof10two-yearpilotprojectsacrossScotlandseekinganewway
ofworkingbetweenthepublicsectorandtheThirdSector.ArgyllandButeCouncil
andArgyllandButeSocialEnterpriseNetwork,thetwopartnersintheproject,
haveappointedtheBritishRedCrossasThirdSectorPartnerandPreferredProvider.
SharedCareScotlandisalsosupportingthispilot.
13.23 Therearefurtherexamplesofshortbreaksbureaus(seetheFalkirkexample).
SharedCareScotlandhassetupanActionLearningSetcurrentlyworkingwith
ninelocalauthoritiestohelptakeforwardshortbreakbureaudevelopments.Ideas
aresharedtoseeifsomeoftheadministrativeandfundingchallengesofsettingup
abureaucanbetackled.Thebureauhelpstoconnectpeoplewithservicesthatbest
meettheirparticularneedsandsituation.
13.24 Itisveryimportantthatemergencyrespitecareisavailablewhere,for
example,acarerhastodealwithanemergencyandneedsrespiteatshortnotice.
Therearevariousmeanstoprovidesuchsupport.Inverclyde Council is using Concordat monies to fund the local carers’ centre to provide sitter services either on a one-off or ongoing basis. This service is widely publicised in order to target ‘hidden carers’ as well as those already in touch with the carers centre. The Council also has a Rapid Response Team, which has a home care team to provide emergency respite.
13.25 ThereareanumberofActionPointsasbelow,allrelevanttoyoung carers
too:
ACTION 13.1The Scottish Government, in allocating £1 million to the national carer organisations in 2010-11 for short breaks provision, will monitor progress towards the provision of innovative, personalised, flexible provision which meets the needs of carers.
82 Chapter13 pp.76-82
ACTION POINT 13.2In 2010-11 the Scottish Government will work with Shared Care Scotland and others to disseminate the findings of the short breaks research and to consider the development of further actions in light of the findings. In particular, Shared Care Scotland seeks to use the research findings to support partners to improve the local strategic planning and commissioning of short break provision.
ACTION POINT 13.3For the duration of this strategy, the Scottish Government will undertake to strengthen the NHS role as a strategic partner in supporting the provision of respite care. The Scottish Government will facilitate a high level meeting with NHS Boards to consider current practice, with a view to identifying factors which would help promote/support joint working in this area.
ACTION POINT 13.4For the duration of this strategy, the Scottish Government with Shared Care Scotland and other partners will encourage and support the continued development of more effective ways of providing short breaks through learning networks and, where possible, the setting up of demonstration projects.
ACTION POINT 13.5From 2011, the Scottish Government will work with a range of organisations to explore the potential to develop short breaks provision through volunteers.
ACTION POINT 13.6For the duration of this strategy, the Scottish Government will work with a range of organisations to explore the potential to develop emergency respite and to support carers with emergency planning.
ACTION POINT 13.7The Scottish Government will continue to publish beyond 2011 official statistics on respite provision and will work to improve the quality and consistency of this information, in order to achieve National Statistics status for this data source and publication.
ACTION POINT 13.8By July 2012, the Scottish Government will reassess the timescale for delivery of the Manifesto commitment to a guaranteed annual entitlement to breaks from caring for those in greatest need, taking account of progress in the delivery of short breaks through the other Action Points in this chapter.
Chapter5Carers’RightsChapter14CarerandWorkforceTraining
84 Chapter14 pp.83-87
The purpose of this chapter is to set out the positive outcomes from training provided to carers and the need for a skilled and knowledgeable health and social care workforce. Various actions are set out to help roll out carer training and to provide training to the paid workforce.
Carer Training14.1 inrecognitionofthekeyroletheyplayinprovidingcare,carersshouldget
similaropportunitiesfortrainingasthepaidworkforce.Carerswhoreceivetraining
feelbettersupportedintheircaringroleandmoreconfident.Trainingshould
addressthebroadspectrumoftheemotionalimpactandpracticaldemandsof
caring.Itshouldincludemovingandhandling,managingmedication,managing
carers’ownhealthandwellbeing,andpersonaldevelopment.
14.2 Considerationneedstobegiventohowbesttomeetthetrainingneedsof
specificgroupsofcarerssuchasBMEcarers.
“The trainer helped me to better understand how I could deal with the
difficulties I have coping with the way my son behaves because of his problems.
It helped to be given some good ideas and the way these were explained in
Punjabi afterwards made them easier to understand.”
APakistanicarerinGlasgow.
14.3 NHSBoards,localauthoritiesandvoluntarysectororganisationsneedto
supportimprovedoutcomesforcarersachievedthroughcarertraining,including:
beingmorepositiveaboutcaring,beingmoreconfidentinthecaringroleand
havingamorepositiveimpactonthecarer’shealth.
14.4 Alotofvaluableandoutcomes-focusedcarertrainingisbeingundertaken. NHS Fife, with the local carers centre, has used Carer Information Strategy funding to run training sessions for carers caring for people who have had a stroke or who have chronic obstructive pulmonary disease (COPD), and for carers who care for people with autism. The Lothian carer training pilot, Caring with
Confidence, run by NHS Lothian and the VOCAL Carers Centre, provided training to carers on manual handling. VOCAL has since introduced spot-purchasing of manual handling training in order to fast-track support for carers in greatest need.
85 Caring Together
14.5 Therearelessonstobelearned,suchashavinglearningpathwayssothat
carerscanseethewayforwardtomeettheirknowledge,skillandsupportneeds.
One-offtrainingisnotenoughinmostcases.Thereisalsosomeduplicationof
effortintheprovisionoftrainingtocarers,aswellasgaps.Moreconsideration
needstobegiventoe-trainingandtomeetingthetrainingneedsofcarersinrural and remotelocations.
14.6 TheScottishGovernmenthasprovidedagrantof£281,000tothenational
carerorganisationsin2010-11tohelppromoteandprovidecarer(andworkforce)
training.Theproposalhasthefollowingthreestrands:
• carryingoutafullauditofcarerandworkforcetrainingprovision
acrossScotlandtogetanaccurateandup-to-datepictureinorderto
enableastrategicviewtobetakenandtodevelopplansandfunding
requirementstoaddressneeds;
• developingaCarerTrainingConsortiumtosupportworkatlocallevel
andtodevelopaqualityassuranceframeworkpromotinghighstandards
oftraining,withsystematiccareroutcomeevaluation;and
• deliveryanddevelopmentofcarerandworkforcetrainingbyinviting
applicationsfromacrossthesectors,andfundingcarerandworkforce
trainingthroughtheallocationoffundsinatransparentway.
14.7 SubjecttotheoutcomeoftheSpendingReview,wewillalsoworkwith
NHSBoardssothattheywillmakeacarertrainingoffertocarers.
ACTION POINT 14.1The National Carers Organisations will use the £281,000 grant from the Scottish Government to allocate grants to a range of organisations for carer and workforce training in a transparent and outcome-focused way. The NCOs will ensure dovetailing with the NHS Board Carer Information Strategies.
ACTION POINT 14.2NHS Boards will build on the carer training provided under the Carer Information Strategies and continue to train carers beyond 2011. Subject to the outcome of the Spending Review, the Scottish Government will also work with NHS Boards so that they will make a training offer to carers.
86 Chapter14 pp.83-87
Workforce Training14.8 Awell-informed,knowledgeable,trainedandskilledhealthandsocialcare
workforceisessentialtohelpimprovethelivesofcarersandyoungcarers.
14.9 Healthandsocialcarestaffshouldhaveaproperappreciationoftherole
ofcarersandyoung carersandcommittoengagewithcarersasequalandexpert
partnersinthedesignanddeliveryofhealthandsocialcareservices.
14.10NHSBoardsandlocalauthoritiesneedtocontinuetotakeforwardworkforce
trainingthroughinductiontrainingandcontinuousprofessionaldevelopment.
Relevant good practice includes Glasgow City Council’s mandatory training module for health and social work staff and NHS Lothian’s e-training for the workforce.
14.11 TheScottishGovernmentwilltakeforwardworkforcetrainingissueswiththe
ScottishSocialServicesCouncil(SSSC),withNHSEducationforScotland(NES)and
withothers.
14.12 Thenationalcarerorganisationswillbeusingpartofthe£281,000
grantfromtheScottishGovernmenttoallocategrantsin2010-11toarangeof
organisationsforworkforcetraining.TheNCOswillensuredovetailingwithallother
workforcetraining,includingthatbeingtakenforwardbyNHSBoards.
ACTION POINT 14.3In 2010-12, NHS Education for Scotland (NES), in collaboration with NHS Boards and the national carer organisations, will review existing training, education and learning modules for working with carers and young carers; identify core competencies for NHS staff in identifying and supporting carers and young carers; and identify packages and materials to be incorporated within core induction, education and training curricula.
ACTION POINT 14.4NES will communicate to the relevant regulatory, professional and national bodies the importance of identifying and supporting carers and young carers in workforce training and education.
ACTION POINT 14.5From 2010 onwards, the Scottish Government will work with NHS Boards to ensure that identifying and supporting carers and young carersis embedded inworkforce training.
87 Caring Together
ACTION POINT 14.6From 2010 onwards, the Scottish Government will continue to promote the benefits of workforce training through the Scottish Social Services Council (SSSC), the national carer organisations and others.
ACTION POINT 14.7In 2011-12, NHS Education for Scotland (NES), and the national carer organisations will produce a good practice guide to workforce training. This will be widely distributed.
Chapter5Carers’RightsChapter15HousingandHousingSupport
89 Caring Together
The purpose of this chapter is to indicate the importance to carers of having suitable housing and to set the necessary action within the context of housing reform and Reshaping Care.
15.1 ThereisnospecificCare21recommendationinrelationtohousingor
housingsupport.However,overthepastfewyearscarershaveraisedanumberof
concernsabouthousing,primarilythesuitabilityofhousingforchangingneeds,
andhousingforadultswithlearningdisabilitieswhooutlivetheirparents.Issues
aboutequipmentandadaptationsarecoveredinchapter16ontheuseofassistive
technology.However,itisimportanttonoteherethataidsandadaptationscan
helppeopletoremainintheirownhomewhichcanresultinlesspressureonsocial
housing.
15.2 Someofthespecificconcernsraisedinclude:
• peoplewithlearningdisabilitiescanbeallocatedahousebutthenthere
isnofundingtoputthesupportservicesinplace.Weshouldexplore
waysofpredictingdemand(forhousingandsupport)thatlinkperson-
centredplanningwithcapacity;
• housesareinthewronglocationforindividuals;
• peoplewithlearningdisabilitieswantandshouldbeabletoaccess
thesameopportunitiesforhavingtheirownhomeaspeoplewithout
disabilities;
• muchofshelteredhousingissingleroomorbedsitanddoesnotallowfor
visitingcarersandotherfamilymembers,andsupportedaccommodation
doesnotallowforpartnerstoberesidentandtocontinueintheircaring
role;and
• equipmentandadaptationsshouldbeprovidedquickly(seechapter16
onAssistiveTechnology).
15.3 Housingisanimportantelementinenablingcarerstosupporttheperson
theycarefortoliveindependently,safelyandwithdignityintheirownhomesand
communities.
15.4 TheissuesraisedbycarershavebeenrecognisedaspartofthejointScottish
Government/COSLAReshapingCareprogramme.Thehousingworkstreamknown
90 Chapter15 pp.88-91
as’WiderPlanningforanAgeingPopulation’hasbeentakenforwardthrougha
stakeholderworkinggroup.Thegrouphasidentifiedfivemainoutcomesforolder
people’shousing:
• clearstrategicleadershipisinplaceatnationalandlocallevelaboutthe
housingoutcomestobedeliveredforolderpeople;
• olderpeoplearebetterassistedtoremainin,andmakebestuseof,
existinghousingstock;
• investmentinnewhousingprovisionacrossthesectorsmeetsthefuture
needsofolderpeople;
• theneedsofolderpeopleforlowlevel,preventativesupportaremet;and
• theinfrastructuretosupporttheseoutcomesisimproved.
15.5 Theworkstreamalsoconsideredarangeofoptionstoachievethese
outcomes.Itsreport27proposes27suggestedactionsforspecificmeasures,
coveringpolicy,evidence,standards,guidance,deliveryandinfrastructure.
15.6 TheScottishGovernmenthaslaunchedadiscussionpaperonthefuture
shapeofhousingpolicyinthelightoftheactiontakentorespondtothe
economicdownturn,thefutureconstraintsonpublicexpenditure,andthemany
otherchallengesfacingScottishhousingoverthenextfewyears.Oneofthese
isrespondingtotheincreaseinthenumberofpeopleaged75andover.The
discussionpaperthereforehighlightstheimportanceofsupportingindependent
living,andmoreeffectivelinksbetweenhousing,socialcareandhealthpoliciesand
servicesinthefuture.Thisshouldassistthosecaringforolderordisabledpeople.
15.7 Glasgow City Council has recently demonstrated how allocations policies can be adapted to support families in difficult circumstances. With a range of partners the Council produced in March 2010 ‘A Practical Guide for Registered
Social Landlords: Housing and Autism Spectrum Disorder (ASD).’ These guidelines are a reminder of what registered social landlords need to do to fulfil their duties and to assist people with ASD to get access to appropriate living conditions. It is helpful to the carers of people with ASD. For example, a single mother of two children, one with Asperger’s Syndrome, lived in a two-bedroom property in multi-storey flats. The son with Asperger’s Syndrome needed his own bedroom. The allocations policy did not take account of her son’s need for his own space, as it only took account of physical disability. The Autism Resource Centre worked closely with the Registered Social Landlord to amend the policy so as to award a medical priority for applicants affected by ASD.
27 http://www.jitscotland.org.uk/action-areas/reshaping-care-for-older-people/workstream-e---wider-planning-for-an-ageing-population---housing-and-communities/
91 Caring Together
ACTION POINT 15.1For the duration of this strategy, the Scottish Government and COSLA will work with local authorities, housing associations, the independent rented sector, Health Boards and other partners to ensure that the needs and views of carers are taken into account in developing more effective links between housing, social care and health policies and services.
ACTION POINT 15.2Carers views will be taken into account during public engagement events in 2010 on the Reshaping Care for Older People programme. These views will help shape the development of that programme.
Chapter5Carers’RightsChapter16UseofAssistiveTechnology
93 Caring Together
The purpose of this chapter is to set out action to extend the use of telecare and to ensure that carers have access to information and training on the use of equipment.
Telecare16.1 Telecareistheremoteorenhanceddeliveryofcareservicestopeople
intheirownhomeoracommunitysettingbymeansoftelecommunications
andcomputerisedservices.Thetermusuallyreferstosensorsandalertswhich
provideautomaticandremotemonitoringofcareemergenciesandlifestyle
changes,totriggerhumanresponsesorshutdownequipmenttoprevent
hazards.All32localpartnershipsinScotlandhavedevelopedtelecareservices.
16.2 Averybroadrangeoftechnologiestosupporthealthandcareneedshas
beendeveloped.Theterm‘telehealthcare’isnowbeingusedtodescribethe
widerpackageofservices.
Case studyJoyce has dementia and lives with her husband in Edinburgh. Joyce
tends to walk about during the night. Recently Joyce was admitted to
hospital, unlikely to return home due to her health situation and lack of
management of her night walking. However, Joyce was provided with a
telecare solution, including a property exit sensor and a pager system.
Should Joyce try to leave the house during the night, the property exit
sensor automatically raises a call to her husband’s pager and gradually
turns on the bedside light. This allows Joyce’s husband to get to the
front door or street to assist his wife to return home. It also helps him to
get a better sleep knowing he will be alerted if needed.
16.3 InanindependentreviewoftheTelecareProgrammein2008,2874%of
carersreportedreducedstressand93%ofthosebeingcaredforfeltsaferat
home.Morerecentresearch29furtherreinforcesthesefindings,andidentifies
thatcarerscanbenefitsignificantlyfromusingtelecareservices.
28 TheYorkHealthEconomicsConsortium(YHEC)29 http://www.sociology.leeds.ac.uk/assets/files/research/circle/carers-scotland-report-dec-2009-web.pdf
94 Chapter16 pp.92-96
16.4 Carershavesaid:
“When you have a vulnerable person to care for in your house, it feels like you’re
on duty 24/7. So it was wonderful, it allowed me to relax, gave me chill out time.
I wasn’t on alert throughout the night.”
“I can sleep easier and work easier knowing that a call-out will happen if
something is wrong.”
16.5 Theappropriateandtargeteduseoftelecarecanhelpcarersby:providing
affordableaccesstosupportandassistanceroundtheclock;supportingindividual,
personalisedservices;achievingfewerdaysinhospitalandcarehomesandless
AccidentandEmergencyadmissions;reducingstressandprovidingpeaceofmind;
enablingagoodnight’ssleep;helpingsomecarerstocombineworkandcare;
providingsomewithanopportunityforalifeoutsideofcaring;andprovidingearly
intervention.
16.6 TheScottishGovernmentwillworkwithpartners,includinglocalauthorities,
toensurethattelecarefullybenefitscarersinScotland,enablesmorepeopletolive
independentlyandimprovesthequalityoflifeforcarers.
ACTION POINT 16.1In 2010-11 the Scottish Government, with local authority and other partners, will raise awareness of telecare amongst carers nationally and locally and will ensure that carers have better access to appropriate information on services.
ACTION POINT 16.2The Scottish Government, with Carers Scotland, will ensure that carers’ training is included as part of a national approach to telecare education and training, with a specific workstream developed to address this over 2010-12.
ACTION POINT 16.3In 2010-12, the Scottish Government will ensure that telecare is included in the practical guide to undertaking carers assessments and will promote its further integration within Single Assessment and Care Management/Review protocols and processes.
ACTION POINT 16.4By 2015, the Scottish Government will further maximise the impact of its telecare investment to ensure that the benefits and applications of the new technology for carers continues and develops.
95 Caring Together
ACTION POINT 16.5In 2010-2015 the Scottish Government will further explore the innovative use of new technologies in support of carers living in remote and rural areas, and identify mechanisms which may be more accessible to young carers.
Equipment and Adaptations16.7 Equipmentandadaptationscanplayanimportantpartinsupportingthe
roleofcarers.Havingtherightequipmentoradaptationsinthehomewillallowthe
cared-forpersontoremainathomeforlonger.Itwillalsoreducethepressureon,
andrisksto,thecareranditcanhelppreventhospitaladmissions.
16.8 Research30hasshownthatmanycarersandotherfamilymembersare
puttingtheirhealthatrisk,orsufferingactualshortorlong-terminjury,through
liftingorcarryingtheirchildrenorotherrelatives,becauseofthelackofsuitable
facilities.
“His mother had back problems and had to have an emergency operation after
lifting him onto the toilet one day. She has seen X-rays of her spine which have
convinced her that she cannot risk further damage by trying to help him in
these areas.”
16.9 Itisclearthattheprovisionofequipmentandadaptationscanprovide
physicalrelief,particularlywithregardtobackstrain.Therearealsofinancialand
economicimplications,asadamagedbackcancostthestateinmedicaltreatment
andlostemployment.
16.10 Theissueofcompatibilityofequipmentisoftenraisedbycarers,including
parentcarers,youngpeopleandpractitioners.Parentsinparticularfeelthat
manufacturersshouldworktogethertoensureequipmentiscompatible.
16.11 Anyunnecessarydelayintheprovisionofequipmentandadaptationscan
causefrustrationandputcarersandthepeopletheycareforatrisk.
30 http://www.jrf.org.uk/publications/effectiveness-housing-adaptations
96 Chapter16 pp.92-96
16.12 It is essential therefore that assessments are carried out as early as possible and that the views and experience of the carer are taken into account. The assessment should take into account how needs will change over time, especially when providing adaptations. Where delays are unavoidable, carers and the people they care for need to be kept informed, advised of the reasons for any delay and given a realistic timescale for delivery of equipment or completion of the adaptation.
16.13 Itisalsovitalthatcarers receive adequate trainingontheuseofthe
equipmentprovided.TheHandlewithCareReport31publishedin2008byScotland’s
CommissionerforChildrenandYoungPeoplehighlightedthisasamajorissue.
16.14 Thereportstatedthatthevastmajorityoftheparentsandcarershad
receivednomovingandhandlingtraining.Onecarerstated:
“We never get offered moving and handling training. Our hoist was put in at
home but no training was offered regarding the hoists and slings. They didn’t
even guide us to where we could get training.”
ACTION POINT 16.6In 2011-15 the Scottish Government, with local authorities, Health Boards and other partners, will raise awareness of equipment and adaptations amongst carers and ensure that carers have better access to appropriate information and training on equipment.
31 http://www.sccyp.org.uk/webpages/Handle_with_care_lr.pdf
Chapter5Carers’RightsChapter17AdvocacySupport
98 Chapter17 pp.97-99
The purpose of this chapter is to confirm the importance and value of advocacy for carers in their own right and to encourage support for the development of carer advocacy.
17.1 ThreededicatedcareradvocacyinitiativesoperateinScotland.Carer
advocacyprovidesanimportantsupporttothemostvulnerablecarerstohelp
themtocommunicatetheirviewsclearlyandtosupportthemoncomplexissues
relatingtothecaringsituation.Oftenthesecanrequiretheco-ordinationofaction
byseveralagenciesorcoversituationswherecarersseektoaccessmainstream
provisionforpeoplewithsupportneeds.Theremaybesituationswherepersistence
isrequiredoveralongperiodoftimetoreachasolution,forexample,withhousing
issuessuchasrelocationormajorhousingadaptationstoprovideforindependent
living.
17.2 Inadditiontotheircaringresponsibilities,carerscanbeswampedbyalarge
volumeofpaperworkfromarangeofagenciesinvolvedwiththecareoftheservice
user.Theymayalsoberequiredtoproduceasignificantamountofcorrespondence
themselves.Careradvocacyservicessupportcarerstofillinvariousformsand
applications,writeappealsubmissions,draftformalcomplaintletters,write
specialisteducationplacementrequestsandwritetoMSPs,MPsandcouncillors.
17.3 Careradvocacyorganisationsreportpositiveoutcomesforcarersonawide
rangeofissues,forinstance,one-offinterventions,multi-disciplinaryhearingsand
longcampaignsforre-housingorhousingextensionstoaccommodatepeoplewith
complexdisabilities.Manyofthebeneficiariesarethemselvesdisabledorelderly,or
havementalhealthproblemsorlearningdisabilities.Providingcareradvocacycan
helprestorefamilyandpartnerrelationships.
17.4 Careradvocacyshouldnotgenerallybeprovidedbyindependentadvocacy
workerswhoalsorepresentusersofservices,asthismayleadtoaconflictof
interestandunderminenationalguidanceonprinciplesandstandardsofadvocacy.
Carerscentresarewellplacedtoprovidecareradvocacyasmostlocalcarer
organisationsalreadyfulfiltheroleascollectivecareradvocacyorganisations.
99 Caring Together
“I am the sole carer for my son who has Autistic Spectrum Disorder. His
condition was not diagnosed and he was excluded from school for nearly
4 years. I was judged by many professionals to be the cause of his behaviour.
He was violent and abusive towards me and I became depressed and suicidal.
Having been informed of the existence of the local Advocacy Service I now have
a trained and sympathetic advocate who has, after a 3 year battle, got my son
diagnosed and starting to be integrated into mainstream education. Advocacy
has been my lifeline. I can rely on her support and advice at any time. She is
both mine and my son’s voice at meetings.”
Allison,whoisthesolecarerforherson,whohasAutisticSpectrumDisorder.
17.5 TheScottishGovernmentandCOSLArecognisethevalueandbenefit
ofrepresentationforcarersandwillconsiderthescopeforguidanceabout
careradvocacy.Inviewofthefactthatthemostvulnerablecarerscanbenefit
enormouslyfromadvocacysupportrelatingtotheirabilitytocareandthesupport
theyreceivefortheircaringrole,wewillalsoencouragelocalpartnerstodevelopor
expandcareradvocacy.
ACTION POINT 17.1The Scottish Government and COSLA acknowledge the value and benefit of carer advocacy. From 2011 onwards we will encourage local authorities, NHS Boards and other local partners to develop or expand carer advocacy services for those in greatest need. We will also in 2011-12 examine the scope for producing guidelines on carer advocacy.
Chapter5Carers’RightsChapter18EmploymentandSkills
101 Caring Together
The purpose of this chapter is to confirm the importance of carer employment, skills development and lifelong learning, recognising the important role of carer-friendly and flexible working practices and to set out actions in support of this.
18.1 Takingonacaringroleshouldnotmeanthatpeoplehavetogiveupworkto
care.Ifpeoplehavetoleavepaidemployment,reducehoursofworkormoveinto
alowerskilledjob,theycanexperiencefinancialhardshipthroughlossofearnings
(estimatedat£11,822eachyear32)andpensionrights.
18.2 Thebenefitsofemploymenttoindividualsinsociety(forexample,income,
responsibilityandrespect)shouldextendtocarers.Carerswhowantandareable
toworkshouldbeenabledtodoso,andshouldnotbediscriminatedagainst.They
shouldbesupportedintheworkplacetomaintaintheiremploymentstatus.
18.3 TheparticularchallengesfacedbyBMEcarerswhosecommunitiesare
characterisedbyveryhighlevelsofselfemployment,(forexample,retailand
catering)needtobetackledsothatBMEcarersarenotexcludedfromemployment
opportunities.
18.4 Carersshouldhaveaccesstolifelonglearningopportunities,furtherand
highereducationandskillsdevelopmentinwayswhichtakeaccountoftheircaring
responsibilities.
18.5 Thereisagoodeconomicandbusinesscaseforsupportingcarersthrough
introducingandextendingflexibleworkingpractices.33
18.6 EmploymentisreservedtotheUKParliament.However,theScottish
Government,throughskillsdevelopmentandeconomicpolicies,andthepromotion
ofcarer-friendlyworkingpractices,cansupportcarerstoremainin,orreturnto,
employmentortotakeuplifelonglearningopportunities.Whereworkingagecarers
havetogiveupemploymenttocare,thereneedstobeaccesstoongoingsupport.
18.7 Itisimportanttosupportcarersastheybegintoplantheirroutebackinto
workorlearningoncecaringends.
18.8 TheJobCentrePlusprogrammeinScotland,WorkFocusedSupportforCarers,
isinplace.
32 http://www.carersuk.org/Professionals/ResearchLibrary/Financialimpactofcaring/120110902333 http://www.carersuk.org/Professionals/ResearchLibrary/Employmentandcaring/1201869157
102 Chapter18 pp.100-102
18.9 Manyemployershavedevelopedcarer-friendlypoliciesandeffective
workplacepractices,enablingcarerstoremainin,ortoreturnto,work.34
18.10 ThereisaclearmessageandvisionintheSkillsforScotlandStrategyand
theScottishGovernment’seconomicpoliciesthatwehavethepotentialtodo
morewiththeskillsavailabletous.TherefreshedSkillsStrategyforScotlandwill
emphasisetheimportanceofskillsdevelopmentforcarersandyoung carersand
theskillsthatcarersandyoungcarersbringtoemployment.
18.11 TheScottishGovernmentispleasedthatSkillsDevelopmentScotland35has
undertakentosupportcarersandyoungcarersinboththeshortandlongerterm.
SkillsDevelopmentScotlandhascommittedtoanumberofActionPoints.Thosein
relationtoyoung carersareincludedintheyoungcarers’partofthestrategy.
ACTION POINT 18.1In 2010 and beyond, the Scottish Government will: - encourage public bodies,36 through identifying and building on good
practice, to promote carer friendly employment practices; and- i dentify ways in which the Scottish Government can work with employers
and others to promote carer friendly employment practices. The Scottish Government’s Employability Learning Network (ELN) will help with this, including consultation with employability stakeholders.
ACTION POINT 18.2By September 2011, Skills Development Scotland will increase awareness of its services and resources with carers’ centres in Scotland, facilitated by the PRTC.
ACTION POINT 18.3By December 2011, Skills Development Scotland will explore the opportunities afforded to carers by its partnership with JobCentre Plus, to develop an Integrated Employment and Skills service.
ACTION POINT 18.4By March 2012, Skills Development Scotland (SDS), the national carer organisations and the network of carers centres will work together to build on good practice to: - identify the learning, career aspirations and employability requirements
of carers; and - i dentify ways in which SDS services can be more effectively targeted to
help carers into training and employment.
34 NationalFrameworkforCarersandEmployment,CarersScotland(2007)35 Setupin2007,SkillsDevelopmentScotlandisanon-departmentalpublicbody,accountabletoScottishMinisters36 ExecutiveNonDepartmentalPublicBodies(NDPBs),AdvisoryNDPBs,Tribunals,NHSBodiesandothersignificantnationalbodies
Chapter5Carers’RightsChapter19TacklingPoverty:FinancialInclusion
104 Chapter19 pp.103-106
The purpose of this chapter is to summarise the issues which have an impact on carers’ level of income and to set out actions to help carers maximise their income. Policy on, and administration of, all benefits and tax credits, including the Carer’s Allowance, is the responsibility of the UK Government.
19.1 Povertyandworriesaboutfinancescanhaveanadverseimpactoncarers’
health,wellbeingandqualityoflife.
19.2 Awiderangeofissuesimpactsoncarers’levelofincome.Carerscan
experiencesignificantfinancialhardshipasaconsequenceoftheircaringrole.They
areoftenfacedwithadditionalcosts,includingfuelcosts,37asaresultoftheillness
ordisabilityofthepersontheycarefor,andtheircaringresponsibilitiescanactasa
barriertoenteringpaidemployment.
“Because the house is used 24/7, gas and electricity consumption is higher than
for those who go out to work. I estimate at least double that of working people.”
19.3 Manycarers,boththoseagedover60andyoungercarers,donotclaimthe
fullrangeofbenefitstowhichtheyareentitled.Theymissoutonpensioncredits,
theCarer’sAllowanceandotherbenefits.38
19.4 WhiletheScottishGovernmentdoesnothaveresponsibilityforthewelfare
system,itdoeshavesomeimportantleverstoinfluencetheuptakeofbenefits.Ithas
madeclearstatementsabouttheimportanceofthebenefitandtaxcreditsystem
workinginpartnershipwithlocalwelfarerightsinformationandadviceservices
tomaximiseincomeandpromotefinancialcapability.TheScottishGovernment
andCOSLAframeworkfortacklingpovertyandincomeinequality,Achieving our
Potential,39setsoutthewiderapproachtoaddressingpovertyanddisadvantage.
19.5 Income maximisation support is vital at points of transition in people’s lives, and should be integrated with holistic services that address all aspects of financial and social exclusion and health and wellbeing. It is important to ensure that people claim all of the financial support to which they are entitled but the work on income maximisation is wider than that. It includes reducing expenditure by, for example, providing advice on the best fuel tariffs or on home insulation, or helping people to manage their debts. It involves a wide range of partners in addition to the named agency.37 http://www.carersuk.org/Professionals/ResearchLibrary/Financialimpactofcaring/122831810138 http://www.carersuk.org/Professionals/ResearchLibrary/Financialimpactofcaring/1207235156 http://www.carersuk.org/Professionals/ResearchLibrary/Financialimpactofcaring/122831810139 http://www.scotland.gov.uk/Publications/2008/11/20103815/0
105 Caring Together
19.6 Arangeofsupportexiststohelpthosewithcaringresponsibilitiestoaccess
allofthebenefits,taxcreditsandgrantsthattheyareentitledto.Welfarerights
servicesarecentraltolocalcitizensadvicebureaux.Manyotherlocally-basedservices
alsofocusonthosecommunitiesandhouseholdswhicharemostvulnerableto
pooroutcomes.Increasingly, Community Planning Partnerships are enhancing established mainstream services to provide holistic and responsive care which addresses all aspects of life circumstances, such as income maximisation, debt advice, access to affordable credit and supporting financial capability. The Scottish Government plans to explore the role of Single Shared Assessments in ensuring that carers are aware of, and receiving all of, the benefits and tax credits to which they are entitled, and in referring individuals for benefit checks where appropriate.
19.7 Arrangementsforsupportingfinancialcapabilitylocallyvaryacrossthe
country,withservicesprovidedby,amongstothers,localauthorities,community
andvoluntarygroups,creditunionsandCitizensAdviceBureaux.Nationwide
servicesareprovidedbyhelplinessuchasCitizensAdviceDirect,CareInformation
ScotlandandtheNationalDebtline.TheConsumerFinancialEducationBody’s
service,Moneymadeclear,offersinformationandguidanceonfinancialmatters,
tailoredtoanindividual’sneedsandcircumstances.Itisaproactive,early
interventionserviceaimingtohelppeoplemakeconfident,informeddecisionsand
makethemostoftheirmoney,withouttryingtosellthemfinancialproducts.
19.8 Moneymadeclearisavailableonthephone,onthewebandcurrently
face-to-faceintheGlasgowarea.The face-to-face service will be available across Scotland from the end of 2010.40
19.9 Intermediariesthatdeliveradviceandsupporttocarersareencouraged
toaccesstrainingwhichincreasesthecapacityoffrontlineagenciestoprovide
accurate,highqualityandeffectiveadviceandinformationontaxcreditsandother
welfarebenefitstoeligibleclaimants.Thiswillhelpmaximisethepotentialincome
availabletofamiliesandindividuals.TheChildPovertyActionGroupSecondTier
AdviceProjectdeliverssuchtraining,fundedbytheScottishGovernment.41
19.10SinceApril2009,incomemaximisationcheckshavebeenundertakenaspart
oftheEnergyAssistancePackage.ThesearecarriedoutbythePensionsServicefor
peopleaged60andover,andbyCitizensAdviceDirectforthoseagedunder60.
Appendix9providesbackgroundontheEnergyAssistancePackage.
40 Moreinformationisavailableat:http://www.moneymadeclear.fsa.gov.uk/41 http://www.cpag.org.uk/scotland/
106 Chapter19 pp.103-106
19.11 Carerorganisations,otherThirdSectorandstatutorybodiesshouldcontinue
toraiseawarenessofthebenefitstowhichcarers,andthosetheycarefor,maybe
entitledto.
ACTION POINT 19.1The Scottish Government will pursue with the new UK Government, as it did with the previous administration, the level of the Carer’s Allowance and a review of financial support to carers.
ACTION POINT 19.2The Scottish Government will work with local authorities and the NHS to enhance the role of Single Shared Assessments and Carers Assessments (Carer Support Plans) as opportunities to promote financial inclusion for carers.
19.12Carerscanbeconcernedaboutlocalauthoritychargingpoliciesforarange
ofsocialcareservicesandsupports.Theycitearangeofissues,includinglackof
consultationonincreasedcharging,sharpmeanstestingtapersonrespitecharges
anddifferencesinapproachindifferentareas.
19.13Localauthoritieswillcontinuetochargeserviceusersandcarersforservices
andsupport.However,COSLApromotestheuseofconsistentandtransparent
chargingpoliciesacrossthecountryandrefreshesitschargingguidanceonan
annualbasis.COSLA is also moving to an online facility, whereby every council’s charging policy will be available to view online. A benchmarking facility is also planned for practitioners in local authorities in order to achieve consistency in the way charging policies are formulated.
ACTION POINT 19.3COSLA will create a benchmarking network to facilitate consistent approaches to charging for non-residential social care services across local authorities. Work will be undertaken annually to assess levels of consistency across Scotland. As part of this process COSLA will engage with national carers organisations to listen and respond to any concerns.
107 Caring Together
Appendix 1Carers Strategy Steering Group
Name Organisation
PatBegley CarersScotland
SueBrace CityofEdinburghCouncil/ADSW
FlorenceBurke PrincessRoyalTrustforCarers(PRTC)
ClaireCairns CoalitionofCarersinScotland(COCIS)
FionaCollie CarersScotland
AnneConlin CarersScotland
SamCoope ScottishGovernment
RonCulley COSLA
SharonDuncan NHSGrampian
SebastianFischer COCISandVoiceofCarersAcrossLothian(VOCAL)
LornaKelly NHSGreaterGlasgowandClyde
SuzanneMunday MinorityEthnicCarersofOlderPeopleProject(MECOPP)
MoiraOliphant ScottishGovernment
CatherinePaterson CarersReferenceGroup
GordonPaterson ScottishGovernment(secondedfromFifeCouncil)
AdamRennie ScottishGovernment(Chair)
JulieRintoul ScottishGovernment
FionaRoberts AlzheimerScotland
JackRyan CrossroadsCaringScotland
MarthaShortreed SocialWorkInspectionAgency(SWIA)
JulieWebster ScottishGovernment(Minutes)
LynnWilliams PRTC
DonWilliamson SharedCareScotland
108 Appendices pp.107-148
Appendix 2Carers Reference Group
Name Area Caring Situation
TonyFitzpatrick(resigned)
NorthLanarkshire
Adultdaughterwithseverelearningdifficulties
AlanGow Glasgow Adultsonwithmentalhealthproblems
AnneHenderson(resigned)
Highland Dualcaringrole
RosemaryKennedy
Glasgow Motherwithdementia,whosadlydied
AnneMacleod EdinburghAdultdaughterwithcomplexdisabilitiesasaresultofRettSyndrome
BrettMillett GlasgowYoungdaughterwithraregeneticsyndrome,CorneliaDeLangeSyndrome
AnnOliver HighlandHusbandwhohascomplexhealthneeds,includinglimitedmobilityandbonestructureproblems
CatherinePaterson
ArgyllandButeFormercarerforhusbandwithmotorneurondisease.Nowcaringforparentsintheir80s,onewithdementia
EleanorRobertson
Renfrewshire Adultsonwithdrugaddictionsinceage17
SamarSheikh
Lanarkshire Adultsonwithdisabilities(similartocerebralpalsy)
PaulWeddell WestLothianWifehasmultiplesclerosisandadultdaughterhaslearningdifficulties
109 Caring Together
App
endi
x 3
Act
ion
Poin
ts (C
onso
lidat
ed L
ist)
All
Act
ion
Poin
ts a
re re
leva
nt t
o en
suri
ng b
ette
r out
com
es fo
r car
ers
as fo
llow
s:
Care
rs w
ill:
•
Hav
e im
prov
ed e
mot
iona
l and
phy
sica
l wel
lbei
ng.
•
Hav
e in
crea
sed
care
r con
fide
nce
in m
anag
ing
the
cari
ng ro
le.
•
Hav
e th
e ab
ility
to
com
bine
car
ing
resp
onsi
bilit
ies
wit
h w
ork,
soc
ial,
leis
ure
and
lear
ning
opp
ortu
niti
es a
nd re
tain
a li
fe o
utsi
de o
f ca
ring
.
• N
ot e
xper
ienc
e di
sadv
anta
ge o
r dis
crim
inat
ion,
incl
udin
g fi
nanc
ial
hard
ship
, as
a re
sult
of
cari
ng.
•
Be in
volv
ed in
pla
nnin
g an
d sh
apin
g th
e se
rvic
es re
quire
d fo
r the
ser
vice
us
er a
nd t
he s
uppo
rt fo
r the
mse
lves
.
1.A
CTIO
N P
OIN
TS A
ND
IM
PLEM
ENTA
TIO
N P
LAN
IMPL
EMEN
TATI
ON
LEA
D
1.1
The
Scot
tish
Gov
ernm
ent.
wit
hCO
SLA
,will
kee
pth
iss
trat
egy
unde
rrev
iew
.An
Impl
emen
tati
ona
ndM
onit
orin
gG
roup
w
illre
port
ann
ually
on
prog
ress
wit
hth
efi
rst
repo
rtb
eing
und
erta
ken
byA
ugus
t20
11.A
form
alre
view
will
be
conc
lude
dby
Aug
ust
2013
.As
part
of
the
revi
ewt
heS
cott
ish
Gov
ernm
ent,
wit
hCO
SLA
,and
info
rmed
by
the
view
sof
sta
keho
lder
s,in
clud
ing
care
rs,w
illd
ecid
ew
heth
ern
ewo
rrev
ised
act
ions
wou
ldb
eap
prop
riate
.
Scot
tish
Gov
ernm
ent
and
COSL
A-
wit
hpa
rtne
rs
2.IN
TRO
DU
CTIO
N
2.1
Coun
cils
,wit
hpa
rtne
rsin
NH
SBo
ards
,the
nat
iona
lcar
ero
rgan
isat
ions
and
oth
erT
hird
Sec
toro
rgan
isat
ions
,will
con
tinu
eto
pro
mot
epe
rson
alis
atio
n,w
orki
ngt
owar
dsa
pos
itio
nw
here
bys
taff
at
alll
evel
sre
ceiv
ein
duct
ion
trai
ning
and
con
tinu
ous
prof
essi
onal
dev
elop
men
ton
thi
sap
proa
ch,i
nclu
ding
hav
ing
spec
ific
rega
rdt
oth
epe
rson
alis
atio
nof
car
ers’
sup
port
(als
ose
ech
apte
r14
ont
rain
ing)
.
Coun
cils
-w
ith
Hea
lthB
oard
s,N
COs
and
othe
rThi
rdS
ecto
ror
gani
sati
ons
110 Appendices pp.107-148
2.2
The
Scot
tish
Gov
ernm
ent
will
pub
lish
onit
sw
ebsi
tee
ach
year
the
bas
elin
epo
siti
ono
nre
spit
esu
ppor
tto
car
ers
and
the
posi
tion
ina
llye
ars
upt
o20
15.
Scot
tish
Gov
ernm
ent
2.3
Each
yea
r,pa
rtic
ipat
ing
loca
lpar
tner
ship
sw
illc
olle
ctt
here
leva
ntd
ata
ono
utco
me
mea
sure
sre
lati
ngt
oca
rers
int
he
Com
mun
ity
Care
Out
com
esF
ram
ewor
kan
dw
illp
ublis
hpr
ogre
ssa
gain
stt
het
hree
out
com
em
easu
res.
Loca
lCom
mun
ity
Care
Pa
rtne
rshi
ps-
wit
hCo
mm
unit
yCa
re
Benc
hmar
king
Net
wor
k
2.4
Ove
rthe
nex
tfi
vey
ears
,cou
ncils
and
Hea
lthB
oard
s,w
ith
part
ners
,will
take
acc
ount
of
good
pra
ctic
epr
omot
edin
loca
lau
thor
ity
and
Hea
lthB
oard
are
asa
ndw
illc
onsi
derh
owt
heg
ood
prac
tice
can
be
tran
sfer
red,
ifa
ppro
pria
te,a
nd/o
rwill
co
nsid
erw
heth
ero
rhow
exi
stin
gse
rvic
esa
nds
uppo
rts
can
best
be
reco
nfig
ured
to
achi
eve
the
best
out
com
esfo
rcar
ers
and
fort
hose
the
yca
refo
r.A
sa
firs
tst
ep,c
ounc
ilsa
ndH
ealth
Boa
rds,
wit
hpa
rtne
rs,w
illc
onsi
dert
heg
ood
prac
tice
co
ntai
ned
int
hep
ublic
atio
nac
com
pany
ing
this
str
ateg
y.
Coun
cils
and
Hea
lthB
oard
s-
wit
hpa
rtne
rs
2.5
By2
015,
the
Sco
ttis
hG
over
nmen
tw
ille
nsur
eth
att
hein
tent
ions
to
acce
lera
tet
hep
ace
ofs
harin
ggo
odp
ract
ice
unde
rRe
shap
ing
Care
take
acc
ount
of
good
pra
ctic
ein
sup
port
ing
care
rs.
Scot
tish
Gov
ernm
ent
3.PR
OFI
LE O
F CA
RERS
3.1
The
Scot
tish
Gov
ernm
ent
will
mak
eth
ein
form
atio
nco
llect
edo
nca
rers
an
dy
oun
g c
are
rst
hrou
ghs
urve
yss
uch
ast
he
Scot
tish
Hou
seho
ldS
urve
yan
dSc
otti
shH
ealth
Sur
vey
acce
ssib
let
ore
sear
cher
s,c
are
prov
ider
san
dth
epu
blic
thr
ough
its
web
site
and
pub
licat
ions
.
Scot
tish
Gov
ernm
ent
-w
ith
loca
laut
horit
ies
3.2
Inre
spec
tof
the
201
1Ce
nsus
,the
vie
ws
ofc
arer
s’o
rgan
isat
ions
will
be
take
nin
toa
ccou
ntin
dec
idin
gw
hat
anal
ysis
tabl
es
will
be
prod
uced
fort
heG
ener
alR
egis
terO
ffic
efo
rSco
tland
201
1Ce
nsus
web
site
.Sc
otti
shG
over
nmen
t-
wit
hG
RO(s
)
3.3
In2
011-
12,t
heS
cott
ish
Gov
ernm
ent
will
dra
wu
pa
spec
ific
atio
nan
dse
ekt
oco
mm
issi
onre
sear
cho
nco
mm
unit
ies
of
care
rsw
ekn
owli
ttle
abo
utin
clud
ing
refu
gees
,asy
lum
see
kers
,gyp
syt
rave
llers
and
car
ers
wit
hdi
sabi
litie
s,in
clud
ing
lear
ning
dis
abili
ties
.(R
elev
ant
to
you
ng
ca
rers
too
).
Scot
tish
Gov
ernm
ent
-w
ith
NCO
s
4.PR
IORI
TISI
NG
SU
PPO
RT F
OR
CARE
RS
4.1
By2
012,
ift
hey
have
not
alre
ady
done
so,
loca
laut
horit
ies
wit
hpa
rtne
rs,w
illw
ish
tore
visi
tth
eirl
ocal
car
ers
trat
egie
sto
iden
tify
and
sup
port
car
ers
inn
eed
acco
rdin
gto
the
irow
nas
sess
men
tof
nee
d.T
osu
ppor
tth
isp
roce
ss,t
heS
cott
ish
Gov
ernm
ent
will
pro
duce
as
hort
list
of
key
poin
tst
hat
loca
lcar
ers
trat
egie
ssh
ould
add
ress
.
Coun
cils
Scot
tish
Gov
ernm
ent
111 Caring Together
4.2
By2
013,
loca
laut
horit
ies,
wit
hpa
rtne
rs,w
illa
imt
oid
enti
fyc
arer
sin
gre
ates
tne
eda
ccor
ding
to
ano
bjec
tive
ass
essm
ent
ofn
eed,
and
inli
new
ith
publ
ishe
din
dica
tors
,whi
cha
lso
take
sac
coun
tof
the
nat
ure
and
leve
lof
risk.
The
yw
illa
imt
opr
ovid
esu
ppor
t,or
sig
npos
ton
to
supp
ort.
Coun
cils
4.3
Ove
rthe
nex
tfi
vey
ears
,loc
ala
utho
ritie
san
dH
ealth
Boa
rds,
wit
hpa
rtne
rs,s
houl
dse
ekt
opr
ovid
epr
even
tati
ves
uppo
rtt
oca
rers
and
min
imis
eth
ene
edfo
rcris
isin
terv
enti
on.
Coun
cils
and
Hea
lthB
oard
s
4.4
Ove
rthe
nex
tfi
vey
ears
the
Res
hapi
ngO
lder
Peo
ple’
sCa
reP
rogr
amm
ew
illlo
okt
oen
sure
afo
cus
one
arly
inte
rven
tion
for
care
rs.G
ood
prac
tice
int
his
area
will
be
tran
sfer
red
too
ther
car
ese
ttin
gs.
Scot
tish
Gov
ernm
ent
-w
ith
part
ners
5.EQ
UA
LITI
ES –
EQ
UA
LITY
GRO
UPS
AN
D C
ARI
NG
IN
REM
OTE
AN
D R
URA
L A
REA
S
5.1
The
Scot
tish
Gov
ernm
ent,
wit
hCO
SLA
and
par
tner
s,w
ille
nsur
eth
ata
llth
eA
ctio
nPo
ints
int
his
stra
tegy
are
take
nfo
rwar
din
way
sw
hich
fully
add
ress
the
equ
alit
ies
pers
pect
ive.
Scot
tish
Gov
ernm
ent
and
COSL
A-
wit
hpa
rtne
rs
5.2
From
201
0on
war
ds,t
heS
cott
ish
Gov
ernm
ent
will
wor
kw
ith
the
rele
vant
loca
laut
horit
ies,
Hea
lthB
oard
san
dTh
irdS
ecto
ror
gani
sati
ons
tod
evel
opp
lans
to
help
add
ress
rura
lcar
eris
sues
.
Scot
tish
Gov
ernm
ent
-w
ith
coun
cils
and
Hea
lth
Boar
dsa
ndo
ther
par
tner
s
6.CA
RERS
RIG
HTS
6.1
From
201
0on
war
ds,t
heS
cott
ish
Gov
ernm
ent
will
wor
kw
ith
the
nati
onal
car
ero
rgan
isat
ions
to
prom
ote
the
Equa
lity
Act
20
10,o
nce
com
men
ced,
esp
ecia
llyt
hep
rovi
sion
spr
ovid
ing
prot
ecti
onfr
omd
iscr
imin
atio
nfo
rcar
ers.
Scot
tish
Gov
ernm
ent
-w
ith
NCO
s
6.2
The
Scot
tish
Gov
ernm
ent
will
wor
kw
ith
COSL
Aa
ndlo
cala
utho
ritie
sto
ens
ure
aco
nsis
tent
app
roac
hac
ross
loca
lau
thor
itie
sto
the
em
ploy
men
tof
clo
sefa
mily
mem
bers
ine
xcep
tion
alc
ircum
stan
ces.
The
gui
danc
eon
impl
emen
tati
ono
fth
eSe
lf-D
irect
edS
uppo
rtS
trat
egy,
to
bep
rodu
ced
byt
heS
cott
ish
Gov
ernm
ent,
will
incl
ude
ase
ctio
non
app
roac
hes
tot
he
empl
oym
ent
ofc
lose
fam
ilym
embe
rsin
exc
epti
onal
circ
umst
ance
s.
Scot
tish
Gov
ernm
ent
and
COSL
A-
wit
hco
unci
ls
6.3
ByD
ecem
ber2
011,
the
Sco
ttis
hG
over
nmen
tw
illp
rodu
ce,w
ith
COSL
Aa
ndp
artn
ers,
aC
arer
sRi
ghts
Cha
rter
forw
ide
dist
ribut
ion
tolo
cala
utho
ritie
s,H
ealth
Boa
rds,
Com
mun
ity
Hea
lthP
artn
ersh
ips
and
othe
rbod
ies.
By
Dec
embe
r201
3,t
he
Scot
tish
Gov
ernm
ent
will
con
side
rwhe
ther
furt
herr
ight
ssh
ould
be
ensh
rined
inla
w.
Scot
tish
Gov
ernm
ent
-w
ith
coun
cils
,NH
SBo
ards
,N
COs
and
othe
rpar
tner
s
112 Appendices pp.107-148
7.CA
RER
INV
OLV
EMEN
T IN
PLA
NN
ING
, SH
API
NG
AN
D D
ELIV
ERY
OF
SERV
ICES
AN
D S
UPP
ORT
7.1
In2
010-
11,t
heS
cott
ish
Gov
ernm
ent
will
ens
ure
care
rrep
rese
ntat
ion
onC
HPs
by
writ
ing
tot
heC
hief
Exe
cuti
ves
ofH
ealth
Bo
ards
to
mak
eth
ish
appe
n.Sc
otti
shG
over
nmen
t
7.2
In2
010-
11,i
nta
king
forw
ard
are
view
of
Publ
icP
artn
ersh
ipF
orum
s,t
heS
cott
ish
Gov
ernm
ent
will
ens
ure
that
itc
onsu
lts
wit
hap
prop
riate
car
ero
rgan
isat
ions
ino
rder
tha
tth
eiri
nter
ests
are
fully
repr
esen
ted.
Scot
tish
Gov
ernm
ent
7.3
Loca
laut
horit
ies
and
NH
SBo
ards
will
ens
ure
they
fully
invo
lve
the
nati
onal
car
ero
rgan
isat
ions
,oth
erT
hird
Sec
tor
orga
nisa
tion
san
dca
rers
,as
appr
opria
tein
the
pla
nnin
gan
dsh
apin
gof
ser
vice
san
dsu
ppor
t.
Coun
cils
NH
SBo
ards
-w
ith
part
ners
7.4
In2
010
and
beyo
nd,t
heS
cott
ish
Gov
ernm
ent
and
COSL
Aw
illp
rom
ote
the
Soci
alC
are
Proc
urem
ent
Gui
danc
eto
loca
lau
thor
itie
sso
tha
tth
eya
rea
war
eof
tha
tpa
rto
fth
egu
idan
ceo
nca
rerp
arti
cipa
tion
and
can
act
on
ita
sap
prop
riate
.Fu
rthe
rmor
e,t
heS
cott
ish
Gov
ernm
ent
will
pro
vide
tra
inin
gfo
rpro
cure
men
tst
aff,
esta
blis
hle
arni
ngn
etw
orks
,and
pro
mot
ego
odp
ract
ice
toc
onti
nue
tos
eek
impr
ovem
ent
inp
rocu
rem
ent
prac
tice
sac
ross
Sco
tland
,whi
chw
illta
kea
ccou
nto
fth
ene
edt
oin
volv
eca
rers
.
Scot
tish
Gov
ernm
ent
COSL
A
8.ID
ENTI
FICA
TIO
N O
F CA
RERS
8.1
From
201
0on
war
ds,t
heS
cott
ish
Gov
ernm
ent
will
pro
mot
eth
iss
trat
egy
wit
hA
lcoh
ola
ndD
rug
Part
ners
hips
(AD
Ps)a
nd
wit
hth
eSc
otti
shD
rugs
Rec
over
yCo
nsor
tium
(SD
RC)a
ndw
illw
ork
wit
h A
DPs
and
wit
hth
eSD
RCt
ohe
lpid
enti
fya
nd
supp
ort
care
rso
fpe
ople
wit
hsu
bsta
nce
mis
use
prob
lem
s.
Scot
tish
Gov
ernm
ent
-w
ith
AD
Psa
ndS
DRC
8.2
The
Scot
tish
Gov
ernm
ent
will
app
roac
hal
lrel
evan
tna
tion
alt
rain
ing
and
qual
ific
atio
nac
cred
itati
onb
odie
sto
agr
eeh
ow
they
cou
ldin
tegr
ate
care
ride
ntif
icat
ion
and
awar
enes
sin
tot
hec
urric
ulum
by
2013
.Sc
otti
shG
over
nmen
t
8.3
In2
011-
12a
ndb
eyon
d,lo
cala
utho
ritie
s,H
ealth
Boa
rds
and
allc
arer
sup
port
org
anis
atio
nsa
ret
oid
enti
fyc
arer
san
dyo
un
g c
are
rsin
the
har
d-to
-rea
chg
roup
s,in
clud
ing
BME
care
rs.
Coun
cils
Hea
lthB
oard
sCa
rerS
uppo
rtO
rgan
isat
ions
8.4
In2
010-
11,t
heS
cott
ish
Gov
ernm
ent
will
wor
kw
ith
the
Roya
lCol
lege
of
Gen
eral
Pra
ctit
ione
rsS
cotla
ndo
nit
spl
ans
to
prov
ide
guid
ance
to
GP
prac
tice
sin
Sco
tland
on
care
ran
d y
oun
g c
are
r id
enti
fica
tion
an
d s
up
por
t.Sc
otti
shG
over
nmen
t-
wit
hRC
GPS
and
NCO
s
113 Caring Together
9.CA
RERS
ASS
ESSM
ENTS
(CA
RER
SUPP
ORT
PLA
NS)
9.1
On
ano
ngoi
ngb
asis
,in
orde
rto
fully
eng
age
care
rsa
ndd
eliv
erim
prov
edo
utco
mes
forc
arer
s,t
heS
cott
ish
Gov
ernm
ent
will
co
ntin
uet
opr
omot
ean
dm
onit
ort
heu
seo
fca
rero
utco
me
eval
uati
ons
thro
ugh
Talk
ing
Poin
ts.
Scot
tish
Gov
ernm
ent
9.2
On
ano
ngoi
ngb
asis
,in
orde
rto
impr
ove
the
know
ledg
ean
dsk
ills
oft
hes
ocia
lcar
ean
dhe
alth
wor
kfor
cein
und
erta
king
ca
rers
’ass
essm
ents
,the
Sco
ttis
hG
over
nmen
t,in
par
tner
ship
wit
hlo
cala
utho
ritie
s,w
illc
onti
nue
toe
ncou
rage
and
pro
mot
eth
efu
rthe
rtra
inin
gan
dde
velo
pmen
tof
sta
ff.(
Als
ore
fert
och
apte
r14
ont
rain
ing)
.
Scot
tish
Gov
ernm
ent
-w
ith
loca
laut
horit
ies
9.3
Ino
rder
to
impr
ove
the
carr
ying
out
of
care
rs’a
sses
smen
tsw
ith
the
aim
of
deliv
erin
gim
prov
edc
arer
sup
port
,the
Sco
ttis
hG
over
nmen
tw
ill,b
y20
12,c
omm
issi
ont
hep
rodu
ctio
nof
pra
ctic
alg
uida
nce
ont
heu
nder
taki
ngo
fca
rers
’ass
essm
ents
.Thi
sw
illin
clud
egu
idan
ceo
nho
wt
oco
nduc
tcu
ltura
llyc
ompe
tent
ass
essm
ents
.Thi
sw
illb
edo
nein
par
tner
ship
wit
hCO
SLA
and
N
HS
Scot
land
and
will
be
info
rmed
by
stak
ehol
ders
and
car
ers.
Scot
tish
Gov
ernm
ent
-w
ith
COSL
Aa
ndN
HS
Scot
land
and
oth
erp
artn
ers
9.4
On
ano
ngoi
ngb
asis
,loc
ala
utho
ritie
sw
illm
onit
ort
heim
pact
and
out
com
eso
fca
rers
’ass
essm
ents
.If
any
reso
urce
s,su
ppor
tsa
nds
ervi
ces
are
not
avai
labl
eto
mee
tne
ed,l
ocal
aut
horit
ies
will
use
the
car
era
sses
smen
t pr
oces
s(a
ndo
ther
in
itia
tive
s)t
ore
cord
wha
tis
cur
rent
lyu
nava
ilabl
e.T
his
will
ass
ist
stra
tegi
cpl
anni
ngw
ith
resp
ect
toc
arer
s’s
uppo
rt.
Loca
laut
horit
ies
10.
RAN
GE
AN
D T
YPE
OF
SUPP
ORT
– N
O A
CTIO
N P
OIN
TS I
N C
HA
PTER
10
11.
INFO
RMAT
ION
AN
D A
DV
ICE
11.1
In2
010,
the
Sco
ttis
hG
over
nmen
tw
illc
onti
nue
tow
ork
wit
hN
HS
info
rmo
nth
ede
velo
pmen
tof
its
Care
rInf
orm
atio
nZo
ne.
Onc
efu
llyd
evel
oped
,NH
S in
form
will
con
tinu
ally
revi
ewt
heo
nlin
ese
rvic
eto
ens
ure
that
itre
mai
nsu
p-to
-dat
e,a
ccur
ate
and
rele
vant
to
care
rs’a
ndy
oun
g c
are
rs’
need
s.
NH
S in
form
Scot
tish
Gov
ernm
ent
11.2
ByD
ecem
ber2
011
the
Scot
tish
Gov
ernm
ent
will
gat
hera
ndre
view
the
ava
ilabl
eev
iden
cea
nds
cope
the
pot
enti
alfo
ra
Scot
land
-wid
eca
rers
’hel
plin
ean
dth
eop
tion
sfo
rpro
vidi
ngit
,inc
ludi
nge
xten
ding
the
ser
vice
forc
arer
sof
fere
dby
Car
eIn
form
atio
nSc
otla
nd.
Scot
tish
Gov
ernm
ent
114 Appendices pp.107-148
12.
CARE
R H
EALT
H a
nd W
ELLB
EIN
G
12.1
In2
011-
12,t
heS
cott
ish
Gov
ernm
ent
will
con
tinu
eto
pro
vide
and
rais
eaw
aren
ess
amon
gst
both
pro
fess
iona
lsa
ndt
he
gene
ralp
ublic
(inc
ludi
ngc
arer
s)o
fBr
eath
ing
Spac
e.T
heS
teps
forS
tres
sbo
okle
tw
illb
eav
aila
ble
onre
ques
t.Sc
otti
shG
over
nmen
t
12.2
The
Scot
tish
Gov
ernm
ent
wit
hpa
rtne
rs,i
nclu
ding
Hea
lthS
cotla
nda
ndt
heN
COs,
will
pro
duce
ab
espo
kere
sour
ceo
nis
sues
re
lati
ngt
ost
ress
and
car
ing,
incl
udin
gbu
ildin
gon
Car
ers
Scot
land
pub
licat
ion,
Fin
ding
the
Bala
nce:
Pro
mot
ing
Goo
d H
ealth
– A
Car
ers’
Res
ourc
e G
uide
to H
ealth
and
Wel
lbei
nga
ndli
nkin
gin
to
the
NH
Sin
form
Car
ers
Info
rmat
ion
Zone
and
to
Ste
ps fo
r Str
ess.
The
reso
urce
will
be
wid
ely
diss
emin
ated
.
Scot
tish
Gov
ernm
ent
-w
ith
Hea
lthS
cotla
nda
nd
the
NCO
s
12.3
In2
010-
11,t
heS
cott
ish
Gov
ernm
ent
will
enc
oura
geN
HS
Boar
ds,C
omm
unit
yH
ealth
Par
tner
ship
san
dlo
cala
utho
ritie
sto
in
trod
uce
prog
ram
mes
of
trai
ning
forc
arer
son
per
son-
cent
red
mov
ing
and
hand
ling
and
ont
hes
afe
use
ofe
quip
men
t.Th
iss
houl
dbe
link
edt
oan
ass
essm
ent
att
hep
oint
of
hosp
itald
isch
arge
pla
nnin
g.
Scot
tish
Gov
ernm
ent
NH
SBo
ards
CHPs
Coun
cils
12.4
From
201
0on
war
ds,t
heS
cott
ish
Gov
ernm
ent
will
pro
mot
eto
car
ers
the
bene
fits
of
the
seas
onal
flu
vac
cine
to
help
pro
tect
th
emse
lves
and
the
peo
ple
they
car
efo
r.Sc
otti
shG
over
nmen
t
12.5
In2
010-
11,t
heS
cott
ish
Gov
ernm
ent
will
wor
kw
ith
NH
SBo
ard
Chie
fEx
ecut
ives
to
ensu
ret
hein
clus
ion
ofe
ligib
lec
arer
s(ie
th
ose
aged
40-
64)i
nth
elis
t of
tho
set
obe
con
side
red
int
hem
ains
trea
min
gof
Kee
pW
ella
ndW
ellN
orth
.Sc
otti
shG
over
nmen
t
13.
SHO
RT B
REA
KS (a
ll re
leva
nt t
o yo
un
g c
are
rs)
13.1
The
Scot
tish
Gov
ernm
ent,
ina
lloca
ting
£1
mill
ion
tot
hen
atio
nalc
arer
org
anis
atio
nsin
201
0-11
fors
hort
bre
aks
prov
isio
n,
will
mon
itor
pro
gres
sto
war
dst
hep
rovi
sion
of
inno
vati
ve,p
erso
nalis
ed,f
lexi
ble
prov
isio
nw
hich
mee
tst
hen
eeds
of
care
rs.
Scot
tish
Gov
ernm
ent
-w
ith
NCO
s
13.2
In2
010-
11t
heS
cott
ish
Gov
ernm
ent
will
wor
kw
ith
Shar
edC
are
Scot
land
and
oth
ers
tod
isse
min
ate
the
find
ings
of
the
shor
tbr
eaks
rese
arch
and
to
cons
ider
the
dev
elop
men
tof
furt
hera
ctio
nsin
ligh
tof
the
fin
ding
s.I
npa
rtic
ular
,the
re
sear
chf
indi
ngs
will
be
used
to
supp
ort
part
ners
to
impr
ove
the
loca
lstr
ateg
icp
lann
ing
and
com
mis
sion
ing
ofs
hort
bre
ak
prov
isio
n.
Scot
tish
Gov
ernm
ent
Shar
edC
are
Scot
land
13.3
Fort
hed
urat
ion
oft
his
stra
tegy
,the
Sco
ttis
hG
over
nmen
tw
illu
nder
take
to
stre
ngth
ent
heN
HS
role
as
ast
rate
gic
part
ner
ins
uppo
rtin
gth
epr
ovis
ion
ofre
spit
eca
re.T
heS
cott
ish
Gov
ernm
ent
will
faci
litat
ea
high
leve
lmee
ting
wit
hN
HS
Boar
dst
oco
nsid
erc
urre
ntp
ract
ice,
wit
ha
view
to
iden
tify
ing
fact
ors
whi
chw
ould
hel
ppr
omot
e/su
ppor
tjo
int
wor
king
int
his
area
.
Scot
tish
Gov
ernm
ent
NH
SBo
ards
Shar
edC
are
Scot
land
115 Caring Together
13.4
Fort
hed
urat
ion
oft
his
stra
tegy
,the
Sco
ttis
hG
over
nmen
tw
ith
Shar
edC
are
Scot
land
and
oth
erp
artn
ers
will
enc
oura
gea
nd
supp
ort
the
cont
inue
dde
velo
pmen
tof
mor
eef
fect
ive
way
sof
pro
vidi
ngs
hort
bre
aks
thro
ugh
lear
ning
net
wor
ksa
nd,w
here
po
ssib
le,t
hes
etti
ngu
pof
dem
onst
rati
onp
roje
cts.
Scot
tish
Gov
ernm
ent
Shar
edC
are
Scot
land
-w
ith
part
ners
13.5
From
201
1,t
heS
cott
ish
Gov
ernm
ent
will
wor
kw
ith
ara
nge
ofo
rgan
isat
ions
to
expl
ore
the
pote
ntia
lto
deve
lop
shor
tbr
eaks
pro
visi
ont
hrou
ghv
olun
teer
s.Sc
otti
shG
over
nmen
t-
wit
hpa
rtne
rs
13.6
Fort
hed
urat
ion
oft
his
stra
tegy
,the
Sco
ttis
hG
over
nmen
tw
illw
ork
wit
ha
rang
eof
par
tner
sto
exp
lore
the
pot
enti
alt
ode
velo
pem
erge
ncy
resp
ite
and
tos
uppo
rtc
arer
sw
ith
emer
genc
ypl
anni
ng.
Scot
tish
Gov
ernm
ent
-w
ith
part
ners
13.7
The
Scot
tish
Gov
ernm
ent
will
con
tinu
eto
pub
lish
offi
cial
sta
tist
ics
onre
spit
epr
ovis
ion
and
will
wor
kto
impr
ove
the
qual
ity
and
cons
iste
ncy
oft
his
info
rmat
ion,
ino
rder
to
achi
eve
Nat
iona
lSta
tist
ics
stat
usfo
rthi
sda
tas
ourc
ean
dpu
blic
atio
n.
Scot
tish
Gov
ernm
ent
Shar
edC
are
Scot
land
-w
ith
part
ners
13.8
ByJ
uly
2012
,the
Sco
ttis
hG
over
nmen
tw
illre
asse
sst
het
imes
cale
ford
eliv
ery
oft
heM
anife
sto
com
mit
men
tto
a
guar
ante
eda
nnua
lent
itle
men
tto
bre
aks
from
car
ing
fort
hose
ing
reat
est
need
,tak
ing
acco
unt
ofp
rogr
ess
int
hed
eliv
ery
ofs
hort
bre
aks
thro
ugh
the
othe
rAct
ion
Poin
tsin
thi
sch
apte
r.
14.
TRA
ININ
G –
CA
RERS
AN
D W
ORK
FORC
E
14.1
The
Nat
iona
lCar
ers
Org
anis
atio
nsw
illu
set
he£
281,
000
gran
tfr
omt
heS
cott
ish
Gov
ernm
ent
toa
lloca
teg
rant
sto
a
rang
eof
org
anis
atio
nsfo
rcar
era
ndw
orkf
orce
tra
inin
gin
at
rans
pare
nta
ndo
utco
me-
focu
sed
way
.The
NCO
sw
ille
nsur
edo
veta
iling
wit
hth
eN
HS
Boar
dCa
rerI
nfor
mat
ion
Stra
tegi
es.
NCO
sN
HS
Boar
ds
14.2
NH
SBo
ards
will
bui
ldo
nth
eca
rert
rain
ing
prov
ided
und
ert
heC
arer
Inf
orm
atio
nSt
rate
gies
and
con
tinu
eto
tra
inc
arer
sbe
yond
201
1.S
ubje
ctt
oth
eou
tcom
eof
the
Spe
ndin
gRe
view
,the
Sco
ttis
hG
over
nmen
tw
illw
ork
wit
hN
HS
Boar
dss
oth
at
they
will
mak
ea
trai
ning
off
ert
oca
rers
.N
HS
Boar
ds
14.3
In2
010-
12,N
HS
Educ
atio
nfo
rSco
tland
(NES
),in
col
labo
rati
onw
ith
NH
SBo
ards
and
the
nat
iona
lcar
ero
rgan
isat
ions
,w
illre
view
exi
stin
gtr
aini
ng,e
duca
tion
and
lear
ning
mod
ules
forw
orki
ngw
ith
care
rsa
ndy
oun
g c
are
rs;i
dent
ify
core
co
mpe
tenc
ies
forN
HS
staf
fin
iden
tify
ing
and
supp
orti
ngc
arer
san
dyo
un
g c
are
rs;a
ndid
enti
fyp
acka
ges
and
mat
eria
lst
obe
inco
rpor
ated
wit
hin
core
indu
ctio
n,e
duca
tion
and
tra
inin
gcu
rric
ula.
NH
SEd
ucat
ion
forS
cotla
nd-
wit
hN
HS
Boar
ds,N
COs,
and
coun
cils
116 Appendices pp.107-148
14.4
NES
will
com
mun
icat
eto
the
rele
vant
regu
lato
ry,p
rofe
ssio
nala
ndn
atio
nalb
odie
sth
eim
port
ance
of
iden
tify
ing
and
supp
orti
ngc
arer
san
dyo
un
g c
are
rsin
wor
kfor
cet
rain
ing
and
educ
atio
n.N
ES
14.5
From
201
0on
war
ds,t
heS
cott
ish
Gov
ernm
ent
will
wor
kw
ith
NH
SBo
ards
to
ensu
ret
hat
iden
tify
ing
and
supp
orti
ngc
arer
san
dyo
un
g c
are
rsis
em
bedd
edin
wor
kfor
cet
rain
ing.
Scot
tish
Gov
ernm
ent
-w
ith
NH
SBo
ards
14.6
In2
009-
10,t
heS
cott
ish
Gov
ernm
ent
will
con
tinu
eto
pro
mot
eth
ebe
nefi
tso
fw
orkf
orce
tra
inin
gth
roug
hth
eSc
otti
sh
Soci
alS
ervi
ces
Coun
cil(
SSSC
),th
ena
tion
alc
arer
org
anis
atio
nsa
ndo
ther
s.Sc
otti
shG
over
nmen
t
14.7
In2
011-
12,N
ESa
ndt
heN
COs
will
pro
duce
ag
ood
prac
tice
gui
det
ow
orkf
orce
tra
inin
g.T
his
will
be
wid
ely
dist
ribut
ed.
NES
NCO
s
15.
HO
USI
NG
AN
D H
OU
SIN
G S
UPP
ORT
15.1
Fort
hed
urat
ion
oft
his
stra
tegy
,the
Sco
ttis
hG
over
nmen
tan
dCO
SLA
will
wor
kw
ith
loca
laut
horit
ies,
hou
sing
ass
ocia
tion
s,th
ein
depe
nden
tre
nted
sec
tor,
Hea
lthB
oard
san
dot
herp
artn
ers
toe
nsur
eth
att
hen
eeds
and
vie
ws
ofc
arer
sar
eta
ken
into
acc
ount
ind
evel
opin
gm
ore
effe
ctiv
elin
ksb
etw
een
hous
ing,
soc
ialc
are
and
heal
thp
olic
ies
and
serv
ices
.
Scot
tish
Gov
ernm
ent
COSL
A-
wit
hpa
rtne
rs
13.2
Care
rs’v
iew
sw
illb
eta
ken
into
acc
ount
dur
ing
publ
ice
ngag
emen
tev
ents
in2
010
ont
heR
esha
ping
Car
efo
rOld
erP
eopl
epr
ogra
mm
e.T
hese
vie
ws
will
hel
psh
ape
the
deve
lopm
ent
oft
hat
prog
ram
me.
Scot
tish
Gov
ernm
ent
16U
SE O
F A
SSIS
TIV
E TE
CHN
OLO
GY
– TE
LECA
RE a
nd E
QU
IPM
ENT
& A
DA
PTAT
ION
S
16.1
In2
010-
11t
heS
cott
ish
Gov
ernm
ent,
wit
hlo
cala
utho
rity
and
othe
rpar
tner
s,w
illra
ise
awar
enes
sof
tele
care
am
ongs
tca
rers
nat
iona
llya
ndlo
cally
and
will
ens
ure
that
car
ers
have
bet
tera
cces
sto
app
ropr
iate
info
rmat
ion
ons
ervi
ces.
Scot
tish
Gov
ernm
ent
-w
ith
coun
cils
and
oth
er
part
ners
16.2
The
Scot
tish
Gov
ernm
ent,
wit
hCa
rers
Sco
tland
,will
ens
ure
that
car
ers’
tra
inin
gis
incl
uded
as
part
of
ana
tion
ala
ppro
ach
tote
leca
ree
duca
tion
and
tra
inin
g,w
ith
asp
ecif
icw
orks
trea
md
evel
oped
to
addr
ess
this
ove
r201
0-12
.Sc
otti
shG
over
nmen
t-
wit
hCa
rers
Sco
tland
16.3
In2
010-
12,t
heS
cott
ish
Gov
ernm
ent
will
ens
ure
that
tele
care
isin
clud
edin
the
pra
ctic
alg
uide
to
unde
rtak
ing
care
rs’
asse
ssm
ents
and
will
pro
mot
eit
sfu
rthe
rint
egra
tion
wit
hin
Sing
leA
sses
smen
tan
dCa
reM
anag
emen
t/Re
view
pro
toco
lsa
nd
proc
esse
s.
Scot
tish
Gov
ernm
ent
117 Caring Together
16.4
By2
015,
the
Sco
ttis
hG
over
nmen
tw
illh
ave
furt
herm
axim
ised
the
impa
cto
fit
ste
leca
rein
vest
men
tto
ens
ure
that
the
be
nefi
tsa
nda
pplic
atio
nso
fth
ene
wte
chno
logy
forc
arer
sco
ntin
ues
and
deve
lops
.Sc
otti
shG
over
nmen
t
16.5
In2
010-
2015
the
Sco
ttis
hG
over
nmen
tw
illfu
rthe
rexp
lore
the
inno
vati
veu
seo
fne
wte
chno
logi
esin
sup
port
of
care
rs
livin
gin
rem
ote
and
rura
lare
as,a
ndw
illid
enti
fym
echa
nism
sw
hich
may
be
mor
eac
cess
ible
to
you
ng
ca
rers
.Sc
otti
shG
over
nmen
t
16.6
In2
010-
15,t
heS
cott
ish
Gov
ernm
ent,
wit
hlo
cala
utho
ritie
s,H
ealth
Boa
rds
and
othe
rpar
tner
s,w
illra
ise
awar
enes
sof
eq
uipm
ent
and
adap
tati
ons
amon
gst
care
rsa
nde
nsur
eth
atc
arer
sha
veb
ette
racc
ess
toa
ppro
pria
tein
form
atio
nan
dtr
aini
ngo
neq
uipm
ent.
Scot
tish
Gov
ernm
ent
Coun
cils
Hea
lthB
oard
s
17.
AD
VO
CACY
SU
PPO
RT
17.1
The
Scot
tish
Gov
ernm
ent
and
COSL
Aa
ckno
wle
dge
the
valu
ean
dbe
nefi
tof
car
era
dvoc
acy.
Fro
m2
011
onw
ards
,we
will
en
cour
age
loca
laut
horit
ies,
NH
SBo
ards
and
oth
erlo
calp
artn
ers
tod
evel
opo
rexp
and
care
radv
ocac
yse
rvic
esfo
rtho
sein
gr
eate
stn
eed.
We
will
als
oex
amin
ein
201
1-12
the
sco
pefo
rpro
duci
ngg
uide
lines
on
care
radv
ocac
y.
Scot
tish
Gov
ernm
ent
-w
ith
coun
cils
,NH
SBo
ards
an
dot
herp
artn
ers.
18.
EMPL
OYM
ENT
AN
D S
KILL
S
18.1
In2
010
and
beyo
nd,t
heS
cott
ish
Gov
ernm
ent
will
: -
enco
urag
epu
blic
bod
ies,
42t
hrou
ghid
enti
fyin
ggo
odp
ract
ice,
to
prom
ote
care
rfrie
ndly
em
ploy
men
tpr
acti
ces;
-ide
ntif
yw
ays
inw
hich
the
Sco
ttis
hG
over
nmen
tca
nw
ork
wit
hem
ploy
ers
and
othe
rst
opr
omot
eca
rerf
riend
ly
empl
oym
ent
prac
tice
s.T
heS
cott
ish
Gov
ernm
ent’
sEm
ploy
abili
tyL
earn
ing
Net
wor
k(E
LN)w
illh
elp
wit
hth
is,i
nclu
ding
co
nsul
tati
onw
ith
empl
oyab
ility
sta
keho
lder
s.
Scot
tish
Gov
ernm
ent
-w
ith
Care
rsS
cotla
nd
18.2
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epte
mbe
r201
1,S
kills
Dev
elop
men
tSc
otla
ndw
illin
crea
sea
war
enes
sof
its
serv
ices
and
reso
urce
sw
ith
care
rs’c
entr
es
inS
cotla
nd,f
acili
tate
dby
the
Prin
cess
Roy
alT
rust
forC
arer
s(P
RTC)
.Sk
ills
Dev
elop
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tSc
otla
nd-
wit
hPR
TC
18.3
ByD
ecem
ber2
011,
Ski
llsD
evel
opm
ent
Scot
land
will
exp
lore
the
opp
ortu
niti
esa
ffor
ded
toc
arer
sby
its
part
ners
hip
wit
hJo
bCen
tre
Plus
,to
deve
lop
anI
nteg
rate
dEm
ploy
men
tan
dSk
ills
serv
ice.
SDS
-w
ith
JobC
entr
ePl
us
1 42
The
bodi
esfu
nded
by
the
Scot
tish
Gov
ernm
ent(
whi
che
xclu
des
the
Furt
hera
ndH
ighe
rEdu
catio
nse
ctor
san
dlo
cala
utho
ritie
s)
118 Appendices pp.107-148
18.4
ByM
arch
201
2,S
kills
Dev
elop
men
tSc
otla
nd,t
hen
atio
nalc
arer
org
anis
atio
nsa
ndt
hen
etw
ork
ofc
arer
sce
ntre
sw
illw
ork
toge
ther
to
begi
nto
:-
iden
tify
the
lear
ning
,car
eera
spira
tion
san
dem
ploy
abili
tyre
quire
men
tso
fca
rers
;-
iden
tify
way
sin
whi
chS
DS
serv
ices
can
be
mor
eef
fect
ivel
yta
rget
edt
ohe
lpc
arer
sin
tot
rain
ing
and
empl
oym
ent.
SDS
-w
ith
NCO
san
dca
rers
ce
ntre
s
19.
TACK
LIN
G P
OV
ERTY
: FIN
AN
CIA
L IN
CLU
SIO
N
19.1
The
Scot
tish
Gov
ernm
ent
will
pur
sue
the
new
UK
Gov
ernm
ent,
asit
did
wit
hth
epr
evio
usa
dmin
istr
atio
n,t
hele
velo
fth
eCa
rer’
sA
llow
ance
and
are
view
of
fina
ncia
lsup
port
to
care
rs.
Scot
tish
Gov
ernm
ent
19.2
The
Scot
tish
Gov
ernm
ent
will
wor
kw
ith
loca
laut
horit
ies
and
the
NH
Sto
enh
ance
the
role
of
Sing
leS
hare
dA
sses
smen
ts
and
Care
rsA
sses
smen
tsa
sop
port
unit
ies
top
rom
ote
fina
ncia
linc
lusi
onfo
rcar
ers.
Scot
tish
Gov
ernm
ent
-wit
hco
unci
lsa
ndN
HS
19.3
COSL
Aw
illc
reat
ea
benc
hmar
king
net
wor
kto
faci
litat
eco
nsis
tent
app
roac
hes
toc
harg
ing
for
non-
resi
dent
ials
ocia
lcar
ese
rvic
esa
cros
slo
cala
utho
ritie
s.W
ork
will
be
unde
rtak
ena
nnua
llyt
oas
sess
leve
lso
fco
nsis
tenc
yac
ross
Sco
tland
.As
part
of
this
pro
cess
CO
SLA
will
eng
age
wit
hna
tion
alc
arer
sor
gani
sati
ons
toli
sten
and
resp
ond
toa
ny
conc
erns
.
COSL
A-
wit
hco
unci
lsa
ndN
COs
119 Caring Together
Appendix 4Resources
Recipient Purpose Amount
NHSBoardsandScottishAmbulanceService
CarerInformationStrategies(CIS)2008-09toMarch2011
£9millionoverthreeyears(£1m/£3m/£5m)
LocalauthoritiesDeliveryof10,000additionalrespiteweeksby2011
£4.19millionin2009-10and2010-11aspartofthelocalgovernmentsettlement
Nationalcarerorganisations(NCO)corefunding
SustainabilityofNCOs£1.275millionbetween2007and2011
NCOprojectfunding–todifferentNCOs
Anumberofdifferentprojects:1)Carertrainingpilots(BME,
rural,Lothian)2)Useofdirectpaymentsin
ruralareas3)LearningforLiving4)Shortbreaksresearch5)Carerandworkforcetraining6)Miscellaneous(Eurocarers,
EngagementEvents)7)Threeyoungcarerinitiatives
(primary-agedyoungcarers/mentalhealthandwellbeing/transitions)
8)Threeyoungcarerfestivals9)Youngcarermappingproject10)Youngcarerproject
sustainabilityfunding
£1.349millionbetween2007and2011
120 Appendices pp.107-148
Appendix 5Care 21 Recommendations and Progress Since 2006
Recommendation 1
We recommend that the Scottish Executive should develop a Carers Rights Charter in Scotland.
1. TheCare21Reportcontainedavisionstatementarticulatingarights-based
visionforcarers.Therightssetoutincludedtherighttowork,therighttorest
andleisure,includingreasonablelimitationofworkinghours,therighttotraining
andeducation,therighttoaccessservicesandtherighttoastandardofliving
adequateforhealthandwellbeing.
2. ThethenScottishExecutivestatedinitsresponsethataCarersRights
Charterwasnotoneofitsimmediatepriorities.
3. TheWorkandFamiliesAct2006givescarersinemploymenttherightto
requestflexibleworkingpatterns.TheEqualityAct2010(tobecommenced)
enshrinesfurtherrightsinlaw.
Recommendation 2
We recommend that a national forum representing the views of young carers be established and supported by a separate Young Carers Strategy.
4. SeeGetting it Right for Young Carers.
Recommendation 3
We recommend that a range of measures to enable greater control and choice (including shifting the balance of ‘purchasing power’ to carers and users) be fully explored by the Scottish Executive.
5. TheScottishGovernmentintendstointroduceaSelf-DirectedSupport
(Scotland)Bill.Thiswouldextenddirectpaymentstocarers.
Recommendation 4
We recommend the development of a national ‘expert carer’ programme. This should include training for people to develop their own caring skills, knowledge and expertise.
121 Caring Together
6. TheScottishGovernmentmadecarertraininganimportantpartofits
guidanceonNHSCarerInformationStrategies.ManyNHSBoards,withpartners,
arefundingcarertraining,includingtrainingrelatedtospecificconditions.
7. TheScottishGovernmentfundedtheonlinecarertraining‘Learningfor
Living,’whichprovidesanintroductiontocaringandameansofenablingcarersto
considertheirfutureplans.
8. TheScottishGovernmentfundedthenationalcarerorganisationstotake
forwardcarertrainingpilotswithBMEcarersandwithcarersinruralareas.Wealso
fundedaCaring with ConfidenceLothianExpertCarerTrainingPilot.
Recommendation 5
We recommend that all frontline staff with direct responsibilities for supporting the needs of carers in ‘first contact’ agencies (local authorities, health and voluntary organisations) are properly equipped to advise unpaid carers about their rights, entitlements and available services.
9. WhilstthereisnospecificrecommendationinCare21aboutthe
identificationofcarers,itisimplicitinrecommendation5.Itisalsopartof
recommendation6abouttheimplementationofNHSCarerInformationStrategies
inalllocalities.
10. Therehasbeenconsiderableprogressoverthelastfewyearsincarer
identificationandself-identification.Thisinturnhasresultedinnewlyidentified
carersaccessingsupport,includingthatprovidedthroughthenetworkofcarers’
centresinScotland.42
11. NHSCarerInformationStrategiesarebeingimplementedinallHealth
Boardareas.MinimumrequirementsandguidancetoHealthBoardsissuedinApril
200643madeclearthatNHSBoardsmustdevelopproposalstoidentifycarers
anddemonstratethatNHSstaffareawareoftheneedtoidentifycarersandto
signpostthemtosourcesofsupport.AllNHSBoardssubmittedprogressreports
for2008-09,withfurtherreportsfor2009-10duelaterin2010.Morecarersare
beingprovidedwithinformationandadvice,orarebeingsignpostedorreferredto
relevantsourcesofadvice.
43 NHSCarerInformationStrategies:MinimumRequirementsandGuidanceonImplementation,NHSHDL(2006)22,24April2006-http://www.sehd.scot.nhs.uk/mels/HDL2006_22.pdf
122 Appendices pp.107-148
12. TheCarerInformationStrategiesbeingtakenforwardbyNHSBoardsare
helpingtotrainhealthandsocialcarestaffincarerandyoung carerawareness
andcarerandyoung carer support.Manyhealthandsocialcarestaffdorecognise
carers’andyoung carers’needsandareworkingwithcarersaspartnersincare.
Recommendation 6
We recommend NHS Carer Information Strategies should be implemented as an early priority in all localities and that the requirements are extended to include local authorities.
13. Seerecommendation5.
14. Localauthoritiesareidentifyingandsupportingcarers.TheScottish
GovernmenthasnocurrentplanstoformallyextendtheCISrequirementstolocal
authorities.
Recommendation 7
We recommend that professional training for all health and social care staff should include a substantial component which relates to unpaid carers as partners in care, carers’ needs and the diversity of the unpaid caring experience.
15. TheNHSBoardCarerInformationStrategies,nationalcarerorganisations
andothershavetakenforwardworkforcetraining.
Recommendation 8
We recommend a greater role for carer representative organisations in the joint planning and development of care and other services (especially housing, leisure and transport) at a national and local level.
16. Nationalcarerorganisationsandcarersareinvolvedinawiderangeof
strategicdevelopmentsatnationallevel,includingengagementinChangingLives,
ShiftingtheBalanceofCare,ReshapingCareandthedevelopmentoftelecare
services.
17. Atlocallevel,NCOsandcarersareinvolvedintheplanninganddevelopment
ofshortbreaks’servicesandotherformsofsupport.
123 Caring Together
Recommendation 9
We recommend that the Scottish Executive and other policy makers integrate the issues facing unpaid carers into their policy development and planning processes.
18. AtScottishGovernmentlevel,thishasbeentakenforwardthroughvarious
policydevelopments,includingthoseinrelationtohealthinequalities,mental
health,dementia,learningdisabilities,independentliving,ReshapingCareand
ShiftingtheBalanceofCare.
Recommendation 10
We recommend that service providers ensure they meet the needs of the whole caring community, taking account of carers with special needs and the specific cultural and language needs of minority ethnic groups.
19. Thisrecommendationisprimarilyforserviceproviders.However,thisstrategy
encouragesserviceproviderstomeettheneedsofallcarers,especiallycarersin
greatestneedandthosecarerswhoareinthehard-to-reachgroups.
Recommendation 11
We recommend that the Scottish Executive continues to update the Carers Strategy to incorporate the impact of demographic and social change and to plan for resourcing of future need.
20. Seerecommendation22.Also,thisstrategysetsoutthefullimplicationsof
demographicandsocialchangeinrelationtosupportforcarers.
Recommendation 12
We recommend that carers’ organisations should have a greater role in the inspection of local services that support unpaid carers and users.
21. CarersarerepresentedontheCareCommissionBoard,andareappointed
aslaymemberstotheScottishSocialServicesCouncilRegistrationandConduct
Committees.AllofSWIA’sperformanceinspectionsofcouncilsinvolvecarersas
inspectors.SWIA,inpartnershipwithCarersScotland,recruitedabankof18carers
employedasinspectorsandruntrainingforcarerinspectorswithGlasgowCollege
forNauticalStudies.
124 Appendices pp.107-148
Recommendation 13
We recommend that local authorities should work with unpaid carers to develop person-centred life plans alongside the established carers’ assessment process.
22. TheGovernment’sframeworkofoutcomesforcarersandserviceusers,
Talking Points,focusesontheoutcomesthatcarerswishtoachievefromthe
assessmentprocess.TheNationalMinimumInformationStandards(NMIS)
reiteratethisposition.
23. Carer’sAssessmentGuidanceforNationalStandardsisavailableasan
AnnextoNMIS.Theemphasisisonimprovingoutcomesforcarers.
24. Theguidanceisalsoclearthatassessmentsmustbe‘culturallycompetent’
inrelationtoBMEcarers.Theideaof‘culturalcompetence’haswiderapplicability
toothergroupsofcarers.
25. TheScottishGovernmentisworkingwithpartnerssothattheybetter
understandtheimportanceofthecarer’sassessment(carersupportplan).Theaim
istoincreaseuptakeandtoadvancethisasameansofensuringbetteroutcomes
forunpaidcarersinScotland.
Recommendation 14
We recommend that the UK Government complete an early review on carers’ benefit entitlements, tax credit and pensions with a particular focus on removing the barriers to work which are inherent in the way current financial arrangements are constructed.
26. TheearningsthresholdforreceiptoftheCarer’sAllowanceincreasedfrom
£95aweekto£100aweekfromApril2010.ThisistheresponsibilityoftheUK
Government.
27. ThePensionsAct2008introducedanewCarer’sCredit(fromApril2010)
whichawardscarerswithNationalInsurancecontributionsinordertoprotecttheir
statepensioneveniftheyarenotinpaidwork.
28. TheScottishGovernmentincludedfamilieswithachildunder16asagroup
whichqualifiesforenhancedmeasuresundertheScottishEnergyAssistance
Package.Thishelpsparentcarersofdisabledchildren.
125 Caring Together
Recommendation 15
We recommend that the UK Government should develop a national awareness campaign to ensure that employers of all sizes are made more aware of both their roles and their responsibilities towards carers, and the overall contribution of unpaid carers.
29. TheActionforCarersandEmploymentinitiative44hasraisedawarenessof
thepersonalandeconomicimplicationsofcarersleavingthepaidworkforceandis
lobbyingforchange.
30. TheWorkandFamiliesAct2006providescarerswiththerighttorequest
flexibleworkingpatternsifcertainconditionsaremet.Employersareexpected
tocomplyandtoagreetotherequestsforflexibleworkingunlesstherearegood
reasonsfornotdoingso.
31. JobCentrePlusintroducedWorkFocusedSupportforCarers(WFSC)in
December2009aspartofacarer-specificprogrammetoimprovethehelpand
adviceavailabletocarerswhowishtore-enterthejobmarket.Theserviceisentirely
voluntaryandcarersarefreetoleaveatanytime.CarePartnershipManagersarein
placeinallJobCentredistrictsinScotland(andtherestoftheUK)andadvisersare
inplaceinlocalJobcentres.
32. CarersUK,supportedbypartnersandCarersScotland,havepromotedgood
practiceonflexibleworkingandhavehighlightedtoemployerstheskillswhich
carersbringtotheworkforce.
33. CityandGuilds,inpartnershipwithCarersScotland,hasdevelopeda
personaldevelopmentandlearningtoolforcarers,Learning for Living,45 consisting
ofonlinelearningresourcesforcarersandaqualification.Thisqualificationis
designedtohelpcarerstoremainin,orreturnto,paidemploymentortoprogress
ontofurtherlearning.
Recommendation 16
We recommend that the Scottish Executive, local authorities and NHS agencies along with partner agencies, focus strongly on the health and wellbeing of unpaid carers.
44 ActionforCarersandEmployment2003-2008,CarersUKandCarersScotlandwithpartnershttp://www.carersuk.org/Profes-sionals/ResearchLibrary/Employmentandcaring/1253636966
45 LearningforLivinghttp://www.carerscotland.org/Policyandpractice/Traininganddevelopmentforcarers/LearningforLiving
126 Appendices pp.107-148
34. TheoverarchingaimoftheCarer Information Strategiesistoenablecarers
tocontinueintheircaringrole,whilstprotectingtheirownhealthandwellbeing.
35. TheScottishEnhancedServicesSchemeforcarersisinplaceineightArea
HealthBoards.GPpracticesintheseareas,oftenwithin situworkersfromtheThird
Sector,aresupportingcarers,andsometimesyoung carers,inanumberofdifferent
ways.Theseincludeprovidinginformationandadviceoncarers’healthand
wellbeing,signpostingoncarerstosourcesofsupportandprovidingadviceon
benefits.Somepracticeshavesetupcarers’registerstoensuretheyareawareof
theircarerpopulationandalsotoidentifypeopleascarers.
36. TheScottishGovernmentcontinuestofundBreathing Space,thefree,
confidential,out-of-hourstelephoneadviceandsignpostingserviceforpeople
experiencinglowmood,depressionoranxiety.Itisavailabletoall,includingcarers.
ItisrunbyNHS24andthenumberis0800 83 85 87.
37. InAugust2008NHS24launchedLiving Life,apilottelephonecognitive
behaviouraltherapyserviceforpeoplewhoarefeelinglow,depressedoranxious.It
isavailablebyreferralfromselectedGPsurgeriesand,byself-referral,infivehealth
boardareas.ItispartoftheScottishGovernment’scommitmenttoincreasethe
availabilityofevidence-basedpsychologicaltherapiesinarangeofsettingsand
througharangeofproviders.In2009anadditionalpilotprojectwaslaunchedto
supportthecommitmenttoincreaseavailabilityofevidence-basedpsychological
therapies–the‘WISH’pilotishostedbyNHSGreaterGlasgowandClyde,and
involvesthreeotherBoards.
38. TheScottishGovernment,workingwitharangeofpartners,hasdeveloped
anationalmentalhealthimprovementcampaigncalledSteps for Stress.This
formspartoftheGovernment’smentalhealthimprovementpolicyandaction
planTowards a Mentally Flourishing Scotland.Theprintedbookletisavailablein
communitysettingssuchasGPsurgeries,libraries,pharmaciesandCitizensAdvice
Bureaus.
39. The Life Begins at 40pilot,whichstartedinMay2010,isalsorelevant.
Itisnowavailabletoallpeople,includingcarersapproachingtheageof40in
Grampian.Itaimsto:
• provideaccesstoasetofhealthrelatedquestionsforallpeople
reachingtheageof40inordertoassesstheircurrentstateofhealth
127 Caring Together
and,onthebasisoftheiranswers,toprovidethemwithhealth
informationand/oranykeyareasforactionwhichmighthelpimprove
theircurrentandfuturehealth;
• beavailablethroughaninteractiveonlinequestionnaireorbycalling
theNHSHelplinenumberwhereanNHS24HealthInformation
Advisorwilltakethecallerthroughthequestionnaire;and
• beavailabletoandforthatpartoftheentireScottishpopulationwho
areeitherapproachingorattheir40thbirthday.
40. InresponsetotheChildren’sCommissioner’sreport‘HandlewithCare,’
Ministersapprovedin2009anumberofproposedactionsaddressingissues
surroundingthemanualmovingandhandlingofchildrenandyoungpeoplewith
disabilities.
Recommendation 17
We recommend that issues facing unpaid carers are given proper consideration when new technology is applied to caring situations.
41. Over25,000peopleinScotlandhavereceivedatelecareserviceasaresult
oftheNationalTelecareDevelopmentProgramme.TheScottishGovernment
launchedthisprogrammein2006withsubstantialinvestmentofover£20million
tohelplocalauthoritiesacceleratetheadoptionofsupportivetechnologieswithin
mainstreamcareprovision.
42. Newguidanceontheprovisionofequipmentandadaptationswasissued
bytheScottishGovernmentinDecember2009.46Theguidanceaimstoassistlocal
authoritiesandtheirNHSpartnerstomoderniseandintegratetheirequipmentand
adaptationsserviceswithinthewidercommunitycarecontext.
Recommendation 18
We recommend that Scotland’s existing network of local carer support organisations is strengthened (carer training and peer support; emotional support and counselling; breaks from caring; advocacy).
43. TheScottishGovernmentprovidescoreandprojectfundingtothenational
carerorganisations.SomelocalauthoritiesandHealthBoardsfundlocalcarer
centres.TheLotteryprogrammeshavealsofundedcentres.
46 CCD5/2009:GuidanceontheProvisionofEquipmentandAdaptations
128 Appendices pp.107-148
44. Seeresponsesunderrecommendationsoncarertraining,healthand
wellbeingandbreaksfromcaring.
Advocacy45. Since2000,theScottishGovernmentandScottishIndependentAdvocacy
Alliance(SIAA)haveledthedevelopmentofindependentadvocacyinScotland.
46. TheScottishGovernmentiscommittedtoensuringthatthereisappropriate
provisionacrossScotlandofadvocacyforpeoplewhoneedit.Oneofthe
achievementshasbeentheinclusionofarightofaccesstoindependentadvocacy
intheMental Health (Care and Treatment) (Scotland) Act 2003.TheIndependent
LivingSharedVisionlookstowardsdisabledpeoplehavingaccesstoarangeof
structured,valuedandaccessibleadvocacyservicestosupporttheiraccessto
independentlivinginallaspectsofdaytodaylife.
47. Earlierthisyear,SIAAproducedAGuidetoCommissionersandPrinciplesand
Standards47andanEvaluationFrameworkToolkit.48Someadditionalworkisplanned
aroundthedevelopmentofguidanceonadvocacyforchildrenandyoungpeople.
In2008theSIAApublishedupdatedPrinciplesandStandardsforIndependent
Advocacy49andanassociatedCodeofPracticeforIndependentAdvocacy.50TheSIAA
hasalsodevelopedaleafletwhichgivesadviceonAdvocacyforFamiliesandCarers.51
48. TheSIAAiscurrentlyreviewingandupdatingtheMapofAdvocacyprovision
acrossScotland.Whencompletedthisshouldhelpidentifygapsinprovisionof
advocacyservices.
49. ThePatientRights(Scotland)Billaimstoplacepatientsatthecentreofthe
NHSinScotland.Thishealthcarelegislation,ifapprovedbytheScottishParliament,
willhelpensurethatpatients’rightsandentitlementsaremorewidelyunderstood
andused.
50. OneofthekeyaspectsoftheBillisthecreationofanewPatientAdviceand
SupportService(PASS)withinHealthBoardareas.ThiswillbestaffedbyPatient
RightsOfficerswhowillhelpandsupportpatientsandmembersofthepublicto
makecomplaints,willprovideinformationabouthealthservices,andwilldirect
themtootherusefultypesofsupport,includingadvocacy.
47 http://www.siaa.org.uk/documents/guide-for-commissioners/siaa_guide_for_commissioners.pdf48 http://www.siaa.org.uk/documents/evaluation-framework/Evaluation_framework_complete.pdf49 http://www.siaa.org.uk/images/stories/siaaprinciples%26standardsforweb.pdf50 http://www.siaa.org.uk/images/stories/siaacodeofpracticeforweb.pdf51 http://siaa.org.uk/images/leaflets/guide-to-advocacy-for-families-and-carers.pdf
129 Caring Together
51. TheScottishGovernmentisprovidingfundingof£1.5milliontoassess
needandprovideadditionaladvocacyservicesoverthreeyearsinordertoimprove
access.
52. TheIndependentAdviceandSupportService(IASS)fundedbyNHSBoards
isavailableinallNHSBoardareastoprovidesupportforpeoplewhohaveconcerns
orwishtomakeacomplaintaboutNHSservices.ItisproposedunderthePatient
Rights(Scotland)BilltoenhanceandreplaceIASSwithanewPatientAdviceand
SupportService.
Recommendation 19
We recommend that national carer organisations focus on their collective role as the ‘voice of carers’ and coordinate effectively their capacity in the planning, development and monitoring of carer policy and support services.
53. Thisisamatterprimarilyforthenationalcarerorganisations,whowork
togetheronvariousinitiatives.TheScottishGovernmentencouragessuchjoint
workingandwillbeencouragingthisfurtherintheyearsahead.
Recommendation 20
We recommend that as an urgent priority the Scottish Executive develops a national strategic framework with service providers to ensure unpaid carers are given a statutory entitlement to appropriate short breaks and breaks from caring.
54. Thereisnostatutoryentitlementtoshortbreaks.
55. TheScottishGovernment,withCOSLAandpartners,issuedguidance
inDecember2008onshortbreaks(respite).http://www.scotland.gov.uk/
Publications/2008/11/20094716/0.ScottishGovernmentMinistershavepublicised
thisguidance,whichsetsoutkeyissuesaboutshortbreaksincludingthepurposeof
shortbreaks,choiceandpersonalisationandstrategicplanning.Itcontainsgood
practiceexamples.
56. UnderitsConcordatagreementwithlocalgovernment,theScottish
Governmenthascommittedfundingof£4.19millionin2009-10and2010-11so
thatlocalauthoritiescandeliveranadditional10,000respiteweeksby2011in
comparisonwith2007-08.
130 Appendices pp.107-148
57. In2008-09,localauthoritiesincreasedrespiteweeksacrossScotlandby
1,150weeks.The2009-10figuresaredueintheAutumn.
58. TheScottishGovernmentisproactivelyworkingwithSharedCareScotland
andotherorganisationstoconsiderandtakeforwardinnovativesolutionsaround
shortbreaksprovision.
59. Thefindingsoftheresearch,fundedbytheScottishGovernmentand
commissionedbySharedCareScotland,whichwillbeavailablelaterinthesummer,
willbewidelydisseminated.TheScottishGovernmentandSharedCareScotland
expectsthisresearchtohelpinformdecisionsatnationalandlocallevelaboutshort
breaks’provision.
Recommendation 21
We recommend that the report’s recommendations are incorporated into providers’ performance management systems and progress monitored by the Scottish Executive and, where appropriate, relevant regulatory and inspection bodies.
60. ManystatutoryandvoluntarysectorproviderswillbeawareofCare21’s
recommendations.SWIAtakesaccountoftherecommendationsinitsinspection
ofservicesforserviceusersandtakescarers’viewsintoaccount.Theprovision
ofrespiteweeks(10,000weeksby2011)ismonitoredundertheConcordat
agreement.TheScottishGovernment’sresponsetothisrecommendationwill
befurtherdevelopedthroughthisstrategy.Localauthorities,do,however,have
responsibilityfordeterminingprioritiesatlocallevel.
Recommendation 22
We recommend that good policy must continue to be based on good research including reliable statistical evidence with attention to the diverse experiences of unpaid carers.
61. TheScottishGovernmentispublishingatthesametimeasthisstrategya
researchpublication,‘Caring in Scotland: Analysis of Existing Data Sources on
Unpaid Carers in Scotland.’Forthefirsttimethisbringstogetherinoneplaceall
thestatisticaldataoncarers.
131 Caring Together
62. Themainsourcesofinformationontheprevalence,intensityandtrendsin
caringupuntilnowhavebeenthe2001CensusandtheScottishHouseholdSurvey.
TheScottishHouseholdSurveyquestionshavebeenrefinedovertheyearstoget
betterinformationoncarers.
63. The2011Censuswillcontainaquestiononcaringsimilartothatinthe
2001Census.Therewillbeafurtherbreakdownonhoursofcaring:the20-49hours
perweekcategorywillbesplit20-34hoursand35-49hoursperweek,tobring
theCensusinlinewiththeScottishHouseholdSurveyandalsotodeterminethe
numberofcarersproviding35ormorehoursperweek,thecurrentthresholdfor
Carer’sAllowance.
64. TheScottishHealthSurveyprovidesadetailedpictureofthehealthof
theScottishpopulation.In2008,theScottishHealthSurveybegantocollect
informationoncarersforthefirsttimeandsomeresultsarepublishedinthe
researchpublicationnotedabove.
65. TheScottishGovernmentisnowpublishing,asOfficialStatistics,information
onrespiteservicesprovidedbyeachcouncilinScotland.Thisdatawillbeused
tomonitortheConcordatCommitmenttoincreaserespiteservicesby10,000
weeksby2011.Thelatestpublicationisavailableat:http://www.scotland.gov.uk/
Publications/2010/02/22113516/0TheScottishGovernmentisworkingwithlocal
authoritiestoimprovethequalityandconsistencyofthisinformation.
66. Aspartofitsperformanceinspectionofsocialworkservicesbetween2005
and2009theSocialWorkInspectionAgency(SWIA)carriedoutasurveyofcarers
whoareincontactwithsocialworkservices.Therewere3,599questionnaires
returnedacrossScotland.TheresultsofthesurveycanbefoundontheSWIA
websiteat:
http://www.swia.gov.uk/swia/findstatsdocument.htm?message=blank
132 Appendices pp.107-148
Appendix 6Number of Unpaid Carers by Local Authority Area
Local Authority Number of Unpaid Carers
AberdeenCity 25,111
Aberdeenshire 29,036
Angus 12,133
ArgyllandBute 10,790
Clackmannanshire 8,690
DumfriesandGalloway 22,216
DundeeCity 14,027
EastAyrshire 21,844
EastDunbartonshire 12,862
EastLothian 13,095
EastRenfrewshire 9,772
EdinburghCity 47,404
EileanSiar 2,933
Falkirk 21,929
Fife 49,522
GlasgowCity 66,371
Highland 29,523
Inverclyde 9,892
Midlothian 14,192
Moray 11,628
NorthAyrshire 18,921
NorthLanarkshire 48,957
OrkneyIslands 1,989
PerthandKinross 19,082
Renfrewshire 24,087
ScottishBorders 12,502
ShetlandIslands 2,246
SouthAyrshire 15,283
SouthLanarkshire 38,023
Stirling 12,050
WestDunbartonshire 13,132
WestLothian 18,086
AllScotland 657,328
Source: ScottishHouseholdSurvey,2007-08
133 Caring Together
Appendix 7Rural Transport – Scottish Government PoliciesThe National Transport Strategy (NTS)InDecember2006,theScottishGovernmentpublishedaNationalTransport
Strategy(NTS)whichsetsa20yearvisionfortransportinScotland.Toensurewe
arecontinuingtoreflecttheGovernment’sprioritiesfortransport,wearecurrently
refreshingtheNTS.
TheScottishGovernmentiscommittedtosustainingtheviabilityofremoteand
fragilecommunitiesthroughensuringaccesstolifelineairandferryservices.
WearealsocommittedtomaintainingandimprovingaccessforruralScotland.This
involvesensuringahighqualitypublictransportsystemaswellassupportingthe
developmentofcommunitytransportsolutions.
Smarter Choices, Smarter PlacesTheSmarterChoices,SmarterPlacesprogrammeisa£15mthree-yearprogramme
insevenlocalprojectareas,supportedbyScottishGovernmentandCOSLA.Ithas
tworuralprojects,DumfriesandKirkwall.Theyaredoingsomeveryinterestingand
worthwhileworkonencouraginglocalsustainabletransportsolutions.
Scottish Ferries ReviewTheScottishFerriesReviewwillinformtheScottishGovernment’slongterm
strategyforlifelineferryservicesinScotlandto2022.Thereviewincludesadetailed
appraisalofroutestodeterminewhetherabetterconfigurationcouldbedeveloped
tobetterserveourislandcommunitieswhilecontributingtoouroverallpurposeof
increasingsustainableeconomicgrowth.Afurtherroundofconsultationeventson
theDraftConsultationDocumentwilltakeplaceinthesummerof2010.
Road Equivalent Tariff (RET)TheScottishGovernmentiscommittedtoensuringthatallremoteandfragile
communitieshavedirectlinkstothegreaterScottisheconomy.Weunderstand
thegenuineconcernsfromScotland’sremoteandfragilecommunitiesaboutthe
affordabilityofferrytravelandtheimpactthathasonislandcommunities.That
iswhywehavelaunchedapilotexercisewhichseekstoestablishthebenefitsofa
roadequivalenttariff(RET)asabasisforfutureferryfares.Thepilotwhichrunson
allWesternIslestomainlandroutesbeganinOctober2008andwillrununtilspring
of2011.AninterimevaluationoftheRETpilotwillfeedintotheScottishFerries
Review.
134 Appendices pp.107-148
Lifeline Air ServicesTheScottishGovernmentsubsidisesthreePublicServiceObligation(PSO)
routesfromGlasgowInternationalAirporttoCampbeltown,TireeandBarra
underEuropeanrules.Inaddition,thereareanumberofPSOsimposedbylocal
authorities.TheselifelinePSOroutesrecognisetheimportanceofairserviceswhich
wouldnototherwisebecommerciallyviablebutareessentialforsocialcohesion
andsustainabilityofScotland’sremotestcommunities.
Air Discount SchemeTheAirDiscountSchemeisdesignedtofacilitateabetterlevelofsocialinclusion
forthoseresidentinsomeofthemostperipheralpartsofScotland.Residents
benefitfroma40%reductiononthecorefareforairtravel.TheSchemehasproved
popularwithresidentssinceitwasintroduced.Aswellasreducingthecostofair
travel,itimprovesconnectivityandreducesjourneytimesintheHighlandsand
Islands.
Rural Transport Fund FromApril2008,thefundingfortheRuralPublicTransportGrantSchemeand
theRuralCommunityTransportInitiative,twoelementsoftheRuralTransport
Fund,wasabsorbedintotheblocklocalgovernmentsettlement.Itisnowforlocal
authoritiestodeterminetheirprioritiesandtoallocatefundingaccordinglyfor
communitytransportservicesinmoreremoteareasofScotlandwherethereareno
scheduledorlimitedpublictransportservices.
Rural Petrol Stations Grant SchemeThethirdelementoftheRuralTransportFundistheRuralPetrolStationsGrant
Scheme,whichrecognisedtheimportanceofcaruseinremoterareasand
supportedruralfillingstations.FromApril2008itbecametheresponsibilityof
HighlandsandIslandsEnterpriseandScottishEnterprise.HIEAreaOfficesareable
toprovidefinancialassistancetofillingstationslocatedinHIE’sFragileAreas,as
partoftheir‘GrowthattheEdge’initiative.
135 Caring Together
Rural Fuel PricesTheScottishGovernmenthasconcernsabouttherelativelyhighpriceoffuelin
remoteruralandislandcommunitiesandthedisproportionateburdenthatthis
placesonhouseholdsandbusinessesintheseareas.Fueldutyisareservedarea.
However,wehavewrittenanumberoftimestosuggesttotheUKGovernmentthat
ScotlandcouldpresstheEuropeanUnionforaderogationtoapplyalowerrateof
fueldutyinruralareas,recognisingtheaccessibilityandpricedisadvantagesfaced
byScotland’sremoteandislandcommunities.
Strategic Transport Projects ReviewTheStrategicTransportProjectsReview(STPR)isamulti-modalapproachto
achievingabalancedandsustainablestrategictransportnetworkwhichprovides
betterconnectionsacrossScotland.TheReviewrecommendsanumberof
improvementstoScotland’srailnetwork,includingrurallinesintheHighlands,such
astheconstructionofnewrailstationsatDalcrossandpossiblyKintore.However,
theSTPRdoesnotprecludeRegionalTransportPartnershipsandlocalauthorities
fromconsideringthevalueofregionalandlocaltransportinterventions.
Public Transport - BusTheScottishGovernmentiscommittedtosupportingourbusindustry.Therecently
announcedthreeyearagreementwiththeConfederationofPassengerTransporton
theBusServiceOperatorsGrantandConcessionaryfarereimbursementwilldeliver
another£740mofsignificantinvestment.ThiswillhelpdeliverbenefitstoScottish
buspassengers,enablingthemtotravelonalargebusnetworkforareasonable
fare.ConcessionarypassengerscancontinuetoenjoyfreetravelalloverScotland
includingresidentsoftheWesternIsles,OrkneyandShetlandwhoareentitled
totwofreereturnferryjourneystothemainlandeachyear.Fundingthroughthe
Concordatprovideslocalgovernmentwiththeauthoritytoinvestinlocalpriorities,
suchasdemandresponsivetransportandthedevelopmentofnewsustainablebus
routes,andtosupportbusserviceswhererequired.Lateststatisticsindicatethat
publictransportsupportoflocalbusservicesbylocalgovernmentwas£53millionin
2008-9.
136 Appendices pp.107-148
Appendix 8Carer Pathway
1. Under the Social Work (Scotland) Act 1968, as amended by the Community Care and Health (Scotland) Act 2002, carers who provide a “substantial amount of care on a regular basis” are entitled to an assessment.
2. Carers who provide substantial and regular care who choose not to have a carer’s assessment can nonetheless access support. However the preferred route to support is via a good quality carer’s assessment.
IdentificationAs carer by health or socialcare professional, or by others
Self-Identification
Self Assessment(where available)
Carer’s Assessmentfor carers who provide
substantial and regular care1.(carer support plan)
Carer chooses not tohave a carer’sassessment (carersupport plan)2.
OR
Access to SupportNo support required
Re-assess or review ifcircumstances change When
Early intervention/preventativeapproachEmergency supportHospital discharge
Culturallycompetent andresponsive to
diversity of carersituations
Impact review andre-assessment as
circumstanceschange
(eg transitions)
Local authority torecord unmet need.
Future planning
Return to work/learningRemain in work/learning
Peer Support/Befriending
Person CentredPlanning;Life or future plans
Education/Training/Lifelong Learning
Self-DirectedSupport
Telecare
Rights
Information
Advice
Carer Training
Advocacy
Short Breaks/Respite
Income Maximisation
Housing Support
Equipment/Applications
Emotional Support
137 Caring Together
Appendix 9Fuel Poverty - Energy Assistance Package
1. TheEnergyAssistancePackage(EAP),launchedon6April2009,aimsto
tacklefuelpovertybyprovidingafour-stagepackageofhelptargetedatthose
mostinneed:
• Stage1energyadviceisavailabletoallwhocontactthemanaging
agentforthescheme.
• Stage2provideshelpwithimprovingincomesthroughbenefitchecks
and,reducingenergybillsbymovingapplicants,whereappropriate,on
totheirenergyproviderssocialtariff.
• Stage3providesaeligiblehouseholdswithloftandcavityinsulation,
wherethisisneeded.
• Stage4canprovideenhancedenergyefficiencymeasuressuchas
centralheating,airsourceheatpumps,externalandinternalwall
insulation.
2. Ahouseholdiseligibleforassistanceifthehousehasanenergyrating
ofbandsE,FandGandtheyareinreceiptofaqualifyingbenefit.Helpisalso
availableforpeopleover60wholiveinahousethatdoesn’thaveacentralheating
systemandforthoseover75wholiveinanenergyinefficientdwelling.
3. Thepackageisavailabletopropertyownersandprivatesectortenants.
SociallandlordshaveaprogrammetoimprovetheirpropertiestomeettheScottish
HousingQualityStandardandsoarenoteligible.
4. EAPistacklingruralfuelpovertybyincludingawiderangeofmeasuressuch
asexternalandinternalwallinsulationandairsourceheatpumpsforhard-to-treat
homes.
5. Adviceonincomemaximisationisavailabletoeveryonewhocallsthe
freephonenumber.
6. From10May2010newRegulationscameintoforceextendingtheeligibility
criteriatoincludeallchildrenundertheageof16wherefamiliesreceivea
qualifyingbenefitandliveinanenergyinefficienthome.Priortothis,theeligibility
criteriaincludedfamilieswithdisabledchildrenundertheageof16.TheScottish
Governmentmonitorstheuptakeoftheenergyassistancepackage.
138 Appendices pp.107-148
7. InformationontheEnergyAssistancePackageisavailablebycallingthe
freephonenumber0800512012orbyaccessingwww.energyassistancepackage.
139 Caring Together
Alcohol and Drug Partnerships (ADPs)
AlcoholandDrugPartnerships(ADPs)havebeensetupforeverylocalcouncilareatotransformtheprovisionofservicestotacklesubstancemisuse.ADPsaredevelopingandimplementinglocalalcoholanddrugsstrategiestoreducethenumbersofpeoplewithsubstancemisuseproblems.
Association of Directors of Social Work (ADSW)
ADSWistheprofessionalassociationrepresentingseniorsocialworkmanagersinlocalgovernmentinScotland.
Black and Minority Ethnic (BME)
Anyminoritygroupwhohasasharedrace,nationality,languageandculture.HouseofLordsdefinitionofanethnicgroup–“Essentialfeaturesarealongsharedhistoryandacommonculturaltradition.Theremayalsobesomeofthefollowingpresent:commongeographicallocationfromasmallnumberofancestors;acommonlanguage;acommonliterature;acommonreligion;and,beingaminoritywithinalargercommunity.”Analternativedefinitionis:”Agroupofpeoplewhosharecertainbackgroundcharacteristicssuchascommonancestors,geographicalorigin,language,cultureandreligion.Thisprovidesthemwithadistinctidentityasseenbyboththemselvesandothers.”
Community Health Partnerships (CHPs)
CommunityHealthPartnershipswereestablishedbyNHSBoardsaskeybuildingblocksinthemodernisationoftheNHSandjointservices,withavitalroleinpartnership,integrationandserviceredesign.
Concordat TheagreementinNovember2007betweentheScottishGovernmentandlocalgovernment,basedonmutualrespectandpartnership.ItunderpinsthefundingtobeprovidedtolocalgovernmenttoMarch2011.
Convention of Scottish Local Authorities (COSLA)
TherepresentativevoiceofScottishlocalgovernmentandtheemployers’associationonbehalfofallScottishcouncils.
Direct payments Paymentsfromcouncilsinlieuofservicesprovideddirectlytoindividualsassessedasbeinginneedofcommunitycareservices.Theamountofmoneyreceiveddependsontheassessedneeds.ThelegalprovisionsrelatingtodirectpaymentsarecontainedwithinanumberofActsandRegulations.ThemaindutiesaresetoutinSection12Band12CoftheSocialWork(Scotland)Act1968andtheaccompanyingRegulationsfrom2003.However,thesehavebeenupdatedoveranumberofyears.
Independent Living Promotesindependentlivingfordisabledpeoplewithchoice,controlandqualityattheheartoftheprovision.
Appendix 10Glossary of Terms and Definitions
140 Appendices pp.107-148
Keep Well and Well North KeepWellandWellNorthprogrammesprovidehealthchecksinsomeofthemostdeprivedareasofScotland.Theyweresetuptoreducehealthinequalitiesbyidentifyingpeopleagedbetween45and64indeprivedcommunitieswhoareatriskofcardiovasculardiseaseandofferinginterventionstoreducetheirrisk.Theupperlimitof64reflectstheobjectiveofpreventingprematuremortalityandmorbidity,prematurebeingdefinedasbeforeage75.
Lesbian, Gay, Bisexual and Transgender (LGBT)
Lesbian,gay,bisexualandtransgenderpeople.
National Carer Organisations (NCOs)
Thefivevoluntaryorganisationsrepresentingcarersissuesonanationalbasis:-CarersScotland-CoalitionofCarersinScotland(COCIS)-CrossroadsCaringScotland-PrincessRoyalTrustforCarers-SharedCareScotland
NHS inform AsinglegatewayprovidedbyNHS24fortheprovisionofqualityassuredhealthinformationforthepopulationofScotland.
Personalisation Personalisationfundamentallymovesthelocationofpower,decision-makingandexpertisefromthesystemtothepeoplewhomayneedsupport.Itisthepracticalapplicationofprinciplesandvaluesthataimtosupport,encourageandassistindividualstoretain,reclaimordiscoverelementsofthemselvesthatareessentialtotheirhumanity.Inthisnewenvironment,morepeoplewillnotrequireformalservices.A‘onesizefitsall’approachisnotwhatwewantforourselves,butcanbewhatwedeliver.(ADSW–Personalisation2009)
Public Partnership Forums (PPFs)
PublicPartnershipForums(PPFs)arethemainstructurebywhichtheCommunityHealthPartnerships(CHPs)linkwiththepeopleofthecommunitiesthattheyserve,sothatthereisameaningfulandcontinuingdialoguewithlocalpeople.
Reshaping Care for Older People
Thereshapingcareforolderpeopleprogrammeisbeingdevelopedascurrentserviceconfigurationforcareforolderpeopleisnotsustainablegiventhedemographicandfinancialpressurewefaceoverthenext20years.TheScottishGovernment,NHSandCOSLAhaveembarkedonamajorprogrammetoengageallinterestsinreshapingcareandsupportservicessothatwemeetpolicyobjectivesinwaysthataresustainable.Thereisaneedtolookcarefullyathowwellcurrentserviceshelpolderpeopletooptimisetheirindependenceandwellbeingandtomakethenecessarychanges.
141 Caring Together
Scottish Drugs Recovery Consortium (SDRC)
Thenewlyestablishedconsortiumwaslaunchedon1June2010.TheSDRCisanindependentnationalmembershiporganisationestablishedtodriveandpromoterecoveryforindividuals,familymembersandcommunitiesaffectedbydrugsacrossScotland.TheconsortiumisfundedbytheScottishGovernmenttosupporttheimplementationanddeliveryofthe‘RoadtoRecovery’nationaldrugsstrategy.SDRCisacompanylimitedbyguaranteeandisregisteredasaScottishcharity.TheSDRCwillbeanopenandaccessiblevehicleforallofthekeystakeholders–individualswhowanttosharetheirexperienceofrecovery,mutualaidandcommunitygroups;treatmentprovidersinstatutoryandnonstatutorysettings;housingagencies;employmentandtrainingorganisations;primaryhealthproviders;andspecialistagencies.Theywillworktogetherwithpeopleinrecoveryandtheirfamiliestodeveloppathwaystomeaningfulandsustainedrecovery.FormoreinformationaboutSDRCvisitwww.sdrconsortium.org.
Scottish Social Services Council (SSSC)
TheScottishSocialServicesCouncil(SSSC)wasestablishedinOctober2001bytheRegulationofCare(Scotland)Act.TheSSSCisresponsibleforregisteringpeoplewhoworkinthesocialservicesandregulatingtheireducationandtraining.
Self-directed support Thedefinitionofself-directedsupportiswiderthanthedefinitionofdirectpayments.Itreferstothemethodbywhichindividualsandfamiliescanhaveinformedchoiceaboutthewaythatsupportisprovidedtothem.Individualbudgetsareanallocationoffundinggiventousersafteranassessmentforsupport.
Shifting the Balance of Care
ShiftingtheBalanceofCaredescribeschangesatdifferentlevelsacrosshealthandsocialcare,allofwhichareintendedtobringaboutimprovementsinhealthandwellbeingandbetterserviceoutcomes.Thisistobeachievedbyprovidingcarewhichisearlierinthecourseofadisease,aquickerdiagnosisandatreatmentprocesstailoredmorecloselytoeachperson’sneedsandisdeliveredclosertohome.
Social Work Inspection Agency (SWIA)
TheSocialWorkInspectionAgency(SWIA)isanindependentGovernmentagencyformedtoimprovethequalityofsocialworkservicesacrossScotland.
In2011,therewillbeasinglebodyforhealthcareservicesandanotherbodyforsocialworkandsocialcareservices,includingchildprotectionandtheintegrationofchildren’sservices.Thenewbodieswilltakeonworkintheseareascurrentlydoneby:HerMajesty’sInspectorateofEducation(HMIE);NHSQualityImprovementScotland(NHSQIS);SocialWorkInspectionAgency(SWIA);andtheCareCommission.
142 Appendices pp.107-148
Third Sector TheThirdSectorcomprisessocialenterprises,voluntaryorganisations,co-operativesandmutuals.IthasanimportantroleinhelpingtheScottishGovernmentachieveitspurposeofcreatingamoresuccessfulcountrywithopportunitiesforalltoflourish,throughachievingsustainableeconomicgrowth.
143 Caring Together
Appendix 11
References1. ScottishGovernment(2007-08):Scottish Household Survey 2007-08
http://www.scotland.gov.uk/Topics/Statistics/16002/SurveyDetails
2. CarersUKandtheUniversityofLeeds(2007):Valuing Carers
http://www.sociology.leeds.ac.uk/assets/files/research/circle/valuing-carers.pdf
3. CarersUK
http://www.carersuk.org/Home
4. OfficeforNationalStatistics:Extrapolated from UK figures of an estimated
700,000 children, Family Resource Survey
5. CarersUK(2008):Carers In Crisis
http://www.carersuk.org/Professionals/ResearchLibrary/
Financialimpactofcaring/1228318101
6. CarersUK
http://www.carersuk.org/Home
7. BritishMedicalJournal:Training Care Givers of Stroke Patients: Economic
Evaluation, 2004
http://www.bmj.com/cgi/content/full/bmj;328/7448/1099
8. Hirst,Michael,Hearts and Minds: The Health Effects of Caring (2004):
UniversityofYorkandCarersScotland
http://www.carersuk.org/Professionals/ResearchLibrary/Healthandcare/1201186051
9. NefConsultation,December2009The Social and Economic Value of Short
Breaks
http://www.actionforchildren.org.uk/uploads/media/36/9163.pdf
10 UniversityofLeedsandCarersScotland(2009):A Weight off My Mind:
Exploring the Potential Impact and Benefits of Telecare for Carers
http://www.sociology.leeds.ac.uk/assets/files/research/circle/carers-scotland-report-
dec-2009-web.pdf
144 Appendices pp.107-148
11. ScottishGovernment(2006):ChangingLives:Report on the 21st Century
Social Work Review
http://www.scotland.gov.uk/publications/2006/02/02094408/16
12. Noweblink.
13. ScottishGovernment,June2010:Scotland’s National Dementia Strategy
http://www.scotland.gov.uk/Topics/Health/health/mental-health/servicespolicy/
Strategy
14. ScottishGovernment,February2010:Respite Care, Scotland 2009
http://www.scotland.gov.uk/Resource/Doc/924/0100863.pdf
15. ScottishExecutive,2006:The Future of Unpaid Care in Scotland
http://www.scotland.gov.uk/Publications/2006/02/28094157/2
16. ScottishExecutive2006:Response to the Care 21 Report: The future of
Unpaid Care in Scotland
http://www.scotland.gov.uk/Publications/2006/04/20103316/3
17. ScottishConsortiumforLearningDisability:eSay Project
ScottishConsortiumforLearningDisability:eSAYproject
18. EqualityandHumanRightsCommission(EHRC):TheEqualityAct2010
http://www.equalityhumanrights.com/legislative-framework/equality-bill/
20. TheCommunityTransportAssociation
http://www.ctauk.org/
21. ScottishGovernment(2010):The Healthcare Quality Strategy for NHS
Scotland
http://www.scotland.gov.uk/Publications/2010/05/10102307/8
22. ThePrincessRoyalTrustforCarers(2010):The Carers Centre Survey
23. SocialWork(Scotland)Act1968–asamendedbytheCommunityCareand
Health(Scotland)Act2002:Carers who provide “a substantial amount of care on a
regular basis” are entitled to an assessment
http://www.scotland.gov.uk/Topics/Health/care/17655/guidance-profesionals/9803
145 Caring Together
24. CareInformationScotland
http://www.careinfoscotland.co.uk/home.aspx
25. RoyalCollegeofPsychiatrists(2004):Carers and Confidentiality in Mental
Health, issues involved in sharing information
http://www.rcpsych.ac.uk/pdf/carersandconfidentiality.pdf
BritishMedicalAssociation(2009):Working With Carers: Guideline for Good
Practice.
http://www.bma.org.uk/healthcare_policy/community_care/Workingwithcarers.jsp
GeneralMedicalCouncil:Confidentiality Guidance: Sharing Information with a
Patient’s Partner, Carers, Relatives or Friends.
http://www.gmc-uk.org/guidance/ethical_guidance/confidentiality_64_66_sharing_
information.asp
GeneralMedicalCouncil:Good Medical Practice: Relatives, Carers and Partners
http://www.gmc-uk.org/guidance/good_medical_practice/relationships_with_
patients_people.asp,
BritishMedicalAssociation(2009):Confidentiality and Disclosure of Health
Information Toolkit
http://www.bma.org.uk/images/confidentialitytoolkitdec2009_tcm41-193140.pdf
26. CarersScotland(2008):Finding The Balance, Promoting Positive Health: A
Carers Resource Guide to Health and Wellbeing
http://www.carerscotland.org/Information/Takingcareofyourself/
NewHealthResourceGuideforCarers
27. JointImprovementTeam,ReshapingCareforOlderPeople2010:Wider
PlanningforanAgeingPopulation
http://www.jitscotland.org.uk/action-areas/reshaping-care-for-older-people/
workstream-e---wider-planning-for-an-ageing-population---housing-and-
communities/
28. TheYorkHealthEconomicsConsortium
http://php.york.ac.uk/inst/yhec/
146 Appendices pp.107-148
29. CarersScotland2009:A Weight off My Mind – Exploring the Impact and
Potential Benefits of Telecare for Unpaid Carers in Scotland
http://www.sociology.leeds.ac.uk/assets/files/research/circle/carers-scotland-report-
dec-2009-web.pdf
30. TheJosephRowntreeFoundation(2001):Money Well Spent – The
Effectiveness and Value of Housing Adaptations
http://www.jrf.org.uk/publications/effectiveness-housing-adaptations
31. Scotland’sCommissionerforChildrenandYoungPeople(2008):Handle with
Care – A Report on the Moving and Handling of children and Young People with
Disabilities
http://www.sccyp.org.uk/webpages/Handle_with_care_lr.pdf
32. CarersUK(2007):Out of Pocket – A Survey of Carers’ Lost Earnings
http://www.carersuk.org/Professionals/ResearchLibrary/
Financialimpactofcaring/1201109023
33. BuckerLandYendleS,CarersUK2006:Who Cares Wins – the Social and
Business Benefits of Supporting Working Carers
http://www.carersuk.org/Professionals/ResearchLibrary/
Employmentandcaring/1201869157
34. CarersScotland(2007): National Framework for Carers and Employment
http://www.carersscotland.org/Policyandpractice/Workingforcarersandemployment/
Outcomesandresearch
35. SkillsDevelopmentScotland2007anon-departmentalpublicbody
accountabletoScottishMinisters
http://www.skillsdevelopmentscotland.co.uk/
36. ExecutiveNondepartmentalPublicBodies(NDPBs),AdvisoryNDPBs,
Tribunals,NHSBodiesandothersignificantnationalbodies
37. CarersScotland(2008):Carers in Crisis
http://www.carersuk.org/Professionals/ResearchLibrary/
Financialimpactofcaring/1228318101
147 Caring Together
38. CarersUK(2005):Caring and Pensioner Poverty: A Report on Older Carers,
Employment and Benefits
http://www.carersuk.org/Professionals/ResearchLibrary/
Financialimpactofcaring/1207235156
CarersUK(2008):Carers in Crisis
http://www.carersuk.org/Professionals/ResearchLibrary/
Financialimpactofcaring/1228318101
39. ScottishGovernment(2008):AchievingOurPotential:AFrameworktoTackle
PovertyandIncomeInequalityinScotland
http://www.scotland.gov.uk/Publications/2008/11/20103815/6
40. MoneyMadeClear
http://moneymadeclear.fsa.org.uk/
41. TheChildPovertyActionGroup
http://www.cpag.org.uk/scotland/
42. BodiesfundbytheScottishGovernment(whichexcludestheFurtherand
HigherEducationsectorsandlocalauthorities)
43. ScottishExecutive2006:NHS Carer Information Strategies: Minimum
Requirements and Guidance on Implementation
http://www.sehd.scot.nhs.uk/mels/HDL2006_22.pdf
44. CarersUKandCarersScotland2003-2007:Action for Carers and
Employment
http://www.carersuk.org/Professionals/ResearchLibrary/
Employmentandcaring/1253636966
45. CarersScotland(2006):Learning for Living
http://www.carerscotland.org/Policyandpractice/Traininganddevelopmentforcarers/
LearningforLiving
46. ScottishGovernment(2009):Guidance on the Provision of Equipment and
Adaptations
http://www.scotland.gov.uk/Topics/Health/care/EandA
148 Appendices pp.107-148
47. ScottishIndependentAdvocacyAlliance(2008):Principles and Standards
http://www.siaa.org.uk/content/view/63/46/
48. ScottishIndependentAdvocacyAlliance:Evaluation Framework Toolkit
http://www.siaa.org.uk/documents/evaluationframework/Evaluation_framework_
complete.pdf
49. ScottishIndependentAdvocacyAlliance:UpdatedPrinciplesandStandards
http://www.siaa.org.uk/content/view/19/36/
50. ScottishIndependentAdvocacyAlliance,2008:Code of Practice for
Independent Advocacy
http://www.siaa.org.uk/images/stories/siaacodeofpracticeforweb.pdf
51. ScottishIndependentAdvocacyAlliance:Independent Advocacy for Families
and Carers
http://siaa.org.uk/images/leaflets/guide-to-advocacy-for-families-and-carers.pdf