Glasgow and surrounding areas - brainstrust tumour support Glasgow.pdf · Glasgow and surrounding areas. Contents ... Welfare and legal advice 30 ... , The Vera Wolstencroft Children

A directory of resources to help people affected by a brain tumour

Edition 1: May 2016

the little

bookwhite

Glasgow and surrounding areas

ContentsNetworking 2

Psychological support 8

Support groups 12

Support for carers 16

Support for children 18

Support lines 20

Financial support 22

Complementary therapies 24

Holidays and short breaks 28

Welfare and legal advice 30

Transport services 34

Respite and end of life care 36

Bereavement support 38

What can brainstrust do to help? 42

Introduction 1

IntroductionWeknowhowlostyoucanfeelwhenyouoryourlovedoneisdiagnosedwithabraintumour.Butwealsoknowhowmanyinvaluablesupportservicesthereareavailablelocallythatcanhelpyouateverystepofyourbraintumourjourney.

Hereatbrainstrustwe’vebeenworkingtirelesslywiththehelpofourfantasticvolunteerssearchinghighandlowforuseful,localservicesforpeopleaffectedbyabraintumour.Thisdirectory,focusingonthecharitysector,includesinformationonsomeofthebestoftheseservicesinGlasgow.Wehopeyoufindittobeanauthoritativeguideandthatithelpsyouaccesstheseresourcesinyourareaquicklyandwhenyoumostneedthem.

Wemaynothaveincludedeverythingherejustyet,butwehavebeenabletobringtogethermanysourcesofhelpthatwe’recomfortablewithandthatweregularlyrecommendtoourcommunity.Youcanfindthemostuptodateversionofthisinformation,andmoreonlineatwww.braintumourhub.org.uk

Thingschange.Newserviceswillpopup,andsomemaystopoperatingorchangetheirfocus,butwewillbereviewingtheinformationwithinthisdirectoryeveryyear.Ifthereareanyadditionalservicesthatyouwouldliketoseeinhere,pleasegetintouchwithuson01983 292 [email protected]

ThisguidewouldnothavebeenpossiblewithoutthesupportofTheRankFoundation,TheVeraWolstencroftChildrenandAnimalCharitableTrustandtheNationalLotterythroughtheBigLotteryFund.

Wehopeyoufindituseful.

From Carol and all the team at brainstrust

2 Networking Networking 3

Servicename Serviceprovider Phonecontact Location Emailandwebaddress Briefdescription

brainstrustMeet Ups

brainstrust 07969 702201 Venuesvary.Pleasegetintouchfordetails.

[email protected]

www.meetup.com/brainstrust

Anopportunityforpatients,carersandanyoneaffectedtogettogethersociallywithothersandhavefun.Youcanshareexperiencesandseekinformationfrompeoplewhoknowwhatyou’regoingthrough,butonlyifyouwantto.Previousget-togethershavetakenplaceoverpizza,tapasandafternoontea.

Glasgow Support Group

TheBrainTumourCharity

07827 595855 Maggie’sCancerCaringCentre,GartnavelHospital,1053GreatWesternRoad,GlasgowG12 0YN

[email protected]

www.thebraintumourcharity.org

HeldonthefirstTuesdayofeverymonth,thesemeetingstakeplaceattheMaggie’sCentrewithinthegroundsofGartnavelHospital.Themeetingsstartat1.30pmandfinishataround3pmandareaimedatpatients,familiesandfriendsofanyonediagnosedwithabraintumour.

The essence of networking is to share experiential sympathy and understanding which can be beyond the scope of health care professionals. Networkingalsoallowsyoutomeetothersfromthewidercommunity–notjustthosewhotypicallyattendsupportgroups.Thesepeoplecanincluderesearchers,fundraisers,charityworkersandotherinterestedparties.

Itisimportanttobeawarethatwhilstnetworkingeventscanbeasourceofexcellentinformation,theyaremuchmore‘free-flowing’thanfacilitatedsupportgroups.Thediscussionisnotcontrolled,opinionscanbesubjective,andtheymaynotconstitutemedicaladvice.

Networking



The Monday and Wednesday Groups

HeadwayGlasgow 0141 332 8878 TheRenfieldCentre,260BathStreet,GlasgowG2 4JP

[email protected]

www.headwayglasgow.org

Theseweeklygroupsareforpeoplewithabraininjury.Thegroupsgiveyouachancetohaveateaandachatandtakepartinvariousactivitiestostimulatememory,numberandworduse.Thegroupsrunbetween1.30pmand4pmandoftenprovideinformationonotheroutingsandexternalactivities.Theyalsohaveregularspeakersonavarietyoftopicssuchasbenefitsandlocalorganisations.

The Walking Group


[email protected]


Thisgroup,opentopeoplewithabraininjury,meetsmonthlyforshortwalksaroundtheGlasgowarea.Longerwalkswillbeavailablebasedondemand.PreviouswalkshavebeentotheGlasgowNecropolis,HogganfieldLochandPollokPark.

Thursday Art Group


[email protected]


Thesetwo-hourartgroupsforpeoplewithabraininjuryofferachancetounleashyourimaginationinagroupofpeoplewhounderstandwhatyouaregoingthrough.Theactivitiesintheseclassesincludedrawing,painting,claywork,collageandpapiermache.ThegroupstakeplaceeveryThursdaybetween2and4pm.



Epilepsy Befriending Service

EpilepsyConnections

0141 248 4125 100 WellingtonStreet,GlasgowG2 6DH

[email protected]

www.epilepsyconnections.org.uk/our-services/befriending-service/

Thisbefriendingservicewillmatchyouwithalike-minded,friendlyandapproachablevolunteerwhowillmeetwithyoufortnightlyandhelpyoutakepartinarangeofsocialactivitiesincludingsports,eatingoutandshopping.Agoodwayofimprovingyourwell-beingandqualityoflife.

Epilepsy Allotment Group

EpilepsyConnections

0141 248 4125 100WellingtonStreet,GlasgowG2 6DH

[email protected]

www.epilepsyconnections.org.uk/forthcoming-events/

Anallotmentopentoadultswhowishtogainsomehealthyexerciseandmeetupwithotherpeoplewithepilepsywhilstgainingsomeusefulgardeningskillsandexperience.Thereisalsoanopportunitytogrowyourownhealthyproducetotakehome.ThegroupmeetsattheallotmenteveryFridaybetween10.30amand1pm.

Move More Glasgow

MacmillanCancerSupport

0141 287 0241 Various [email protected]

www.glasgowlife.org.uk/communities/goodmove/movemore/pages/default.aspx

ThischarityhasanumberofactiveclassesintheGlasgowareaforpeoplelivingwithandbeyondcancer.Gentleexerciseclassescanhelpreducefatigue,aidtherecoveryofyourconfidenceandimproveyourmood.Classesincludewalkinggroups,gentlemovement,gardeningandacircuitclass.

8 Psychologicalsupport Psychologicalsupport 9


brainstrust Counselling

brainstrust 01983 292405 Various [email protected]

www.brainstrust.org.uk

Aprogrammeofcounsellinguniquelydesignedforpatientsandcarersaffectedbyabraintumourdiagnosis.Sessionsmaytakeplaceeitherface-to-faceoroverthetelephonedependingoncircumstances.

The Beatson Counselling Services

BeatsonWestofScotlandCancerCareCentre

0141 301 7000 TheBeatsonWestofScotlandCancerCentre,1053GreatWesternRoad,GlasgowG12 0YN

Contactbytelephoneoraskamemberofstafffordetails.

www.beatson.scot.nhs.uk

Thisserviceaimstohelpyouclarifyanyworryingthoughts,feelingsordifficultiesyoumaybehavingwithyourdiagnosis.Yourcounsellorwilllistentoyou,helpyoumakesenseofyourfeelings,andofferyouemotionalsupport.Theserviceisofferedtobothin-patientsandoutpatientsaswellastheirimmediatefamilybefore,duringandaftertreatment.Getintouchtoarrangeanappointment.

Alongside the care you receive from doctors, nurses and other health professionals you may wish to seek psychological and emotional support.

Itisquiteusualtoexperiencestress,worryandconcernsasaresultofabraintumourdiagnosisortreatment.Itmayleadyoutoexperienceoneormoreofthefollowing:anxiety,uncertaintyaboutthefuture,anger,adjustmentdifficulties,distress,familycommunicationproblems,changesinbodyimage,depression,decision-makingdifficulties,challengesbalancingillnessandtreatmentalongsidethedemandsoflife.

Somepeoplecanfindithelpfultodiscusstheirfeelings,needsandconcernsinaconfidentialspacewithateamexperiencedinhelpingpatientsandthoseclosetothem.Herewehavesomeoptionsforyou.

Psychologicalsupport

10 Psychologicalsupport Psychologicalsupport 11


Talking Therapy and Counselling

CancerSupportScotland

0141 337 8199orFreephone0800 652 4531

TheCalmanCentre,75ShelleyRoad,GlasgowG12 0ZE

[email protected]

www.cancersupportscotland.org

Hereyoucanaccessone-to-onetalkingtherapiesinasafeconfidentialenvironmentfromcounsellorsexperiencedinworkingwithpeopletouchedbycancer.Thisserviceisavailabletoanyoneaffected,includingthosewhohavelostalovedone.

Managing Stress Workshops

Maggie’sGlasgow

0141 357 2269 GartnavelGeneralHospital,1053GreatWesternRoad,GlasgowG12 0YN

[email protected]

www.maggiescentres.org/our-centres/maggies-glasgow/whats-on/

These6-weeklongworkshops,runbyaCancerSupportSpecialist,arespecificallydesignedforthoseaffectedbycancer.Thecourseintroducesdifferentmethodsofrelaxationincluding:controllinganxiousthoughts,meditation,visualisationand‘quick’oremergencyrelaxation.

Where Now? Post-Treatment Course

Maggie’sGlasgow


[email protected]


Thisisaseven-weekcourseforanyonewhohasfinishedtheircancertreatment,aswellastheirfriendsandfamily.Itoffersskillsandtechniquestosupportyouthroughthistransitionperiodandbeyond.Sessionslastaroundthreehoursandareledbyacancersupportspecialistandaclinicalpsychologist.

Glasgow Libraries Drop-in Support

MacmillanCancerSupportandCancerSupportScotland

0141 287 2999 Macmillan@GlasgowLibraries,TheMitchell,NorthStreet,GlasgowG3 7DN

[email protected]

www.glasgowlife.org.uk/libraries/macmillan-at-glasgow-libraries/your-local-library/Pages/default.aspx

LibrariesthroughoutthecityofGlasgowarehosttoafreeandconfidentialdrop-inserviceforanyoneaffectedbycancer.Hereyoucangetemotionalsupportandhighqualityinformationtohelpyouthroughyourcancerjourney.

12 Supportgroups Supportgroups 13

Support groups are a place for people to give and receive both emotional and practical support as well as to exchange information.Peoplewithabraintumour,aswellastheirfriendsandfamilies,findsupportgroupstobeavaluableresourcewherepeoplecansharemedicalinformation,getconfirmationthattheirfeelingsare“normal,”educateothers,orjustletoffsteam.Whensomeoneissearchingforasupportgroup,thesinglemostimportantthingtoremembermaybe:ifthegroupdoesn’tfeelrighttoyouordoesn’tmatchyourneeds,tryadifferentgroup.Therearemanyoptionsavailable.

Supportgroups


Glasgow Support Group

TheBrainTumourCharity

07827 595855 Maggie’sCentre,GartnavelHospital,1053GreatWesternRoad,GlasgowG12 0YN

[email protected]

www.thebraintumourcharity.org

Everyoneiswelcometojointhiswarmandinvitinggroupaimedatpatients,familiesandfriendsofanyonediagnosedwithabraintumour.MeetingstakeplaceonthefirstTuesdayofeverymonthfrom1.30pmto3pm.

Glasgow Carer Cafés

CarersLink 0800 975 2131 or 0141 955 2131

MilngavieEnterpriseCentre,EllangowanRoad,Milngavie,GlasgowG62 8PH

www.carerslink.org.uk/courses/groups/

TheCarerCafesmeetonamonthlybasisandareopentoanycarerwhowouldwelcometheopportunitytosocialise,shareinformation,offermutualsupport,drinkcoffee,eatbiscuitsandhavea‘richtguidblether.’Feelfreetocomealongwheneveryoucan.ThegroupmeetsonthesecondFridayofeachmonthbetween10.30amand12.30pm.GroupsarecurrentlyrunninginMilngavie,Kirkintilloch,BishopbriggsandBearsden.

14 Supportgroups Supportgroups 15


Brain Tumour Support Group

Maggie’sGlasgow


[email protected]


Thismonthlygroupprovidesanopportunitytotalktootherpeoplewhoareinasimilarsituationtoyou.Groupsofferasafespacetoexpressemotionsyoumightnotwanttosharewithyourfriendsandfamily.Youmightlearnfromthosealittlewayaheadofyouontheirjourneyanddevelopyourownstrategiesforcoping.

North Lanarkshire Brain Tumour Support Group

Maggie’sLanarkshire

07827 595855 Maggie’sLanarkshire,MonklandsHospital,TheElizabethMontgomerieBuilding,Airdrie,LanarkshireML6 0JS

[email protected]

www.thebraintumourcharity.org/get-support/support-your-local-area/lanarkshire-brain-tumour-support-group/

Thsisopentopeoplediagnosedwithabraintumouraswellastheirfriendsandfamily.Hereyoucantalkandshareexperienceswithotherpeopleinasimilarsituation.TheymeetonthefirstWednesdayofthemonth,between2pmand3.30pm.

Young Person’s Peer Support Group

CLICSargentandMaggie’sGlasgow

0141 301 7680 Maggie’sGlasgow,GartnavelGeneralHospital,1053GreatWesternRoad,GlasgowG12 0YN

[email protected]

www.clicsargent.org.uk

Thissupportivegroupallowsyoungpeoplewithadiagnosisofcancerorleukaemiatoaccesspeersupportwhilstgainingconfidenceandreducingstress.Thegroup,runbyayoungperson’ssocialworker,communityworkerandpsychologist,isforpeopleagedbetween16and24whoareregisteredwithCLICSargent.ThegroupmeetmonthlyonaWednesdaybetween6pmand7.30pm.TheteamalsorunsanumberofgroupoutingswithMaggie’sforafternoontea,ten-pinbowlingandmealsout.YoungpeoplearenotifiedofthegroupsviatheCLICSargentprivateFacebookpageandmustgivepriornoticetotheCLICSargentteamiftheywouldliketodrop-intoasession.

16 Supportforcarers Supportforcarers 17

Being a carer is not a job you apply for. We know. It’s also one of the hardest jobs you might have to do.Youcouldbefacinglookingaftersomeonewithbothacancerdiagnosisandtheprospectofasignificantlydebilitatingneurologicaldisease.Becauseofthisit’simportantthatyougetthehelpyouneedtoo.Thereisalotoutthereforyou.

Supportforcarers


Confident Caring Group

MarieCurie 0141 557 7515 MarieCurieHospice,BalornockRoad,GlasgowG21 3US

[email protected]

www.mariecurie.org.uk

Forcarerswhowouldlikeinformationandadvicetohelpwiththeircaringrole.Ateachsessionyoumeetothersinasimilarsituationtoyourselfinarelaxedenvironment.Twoclinicalnursesleadthesessionscoveringawiderangeoftopics.

East Renfrewshire Carers Centre

EastRenfrewshireCarers

0141 638 4888 Theyhavevariouscentresinthearea.Contactthemtofindtheonenearesttoyou.

[email protected]

www.eastrenfrewshirecarers.co.uk

Theyofferafullprogrammetosupportadultandyoungcarers.Servicesincludeinformation,advice,emotionalsupportandashortbreakservice.

Talking Therapy for Carers


0141 337 8199 orFreephone0800 652 4531

TheCalmanCentre,75ShelleyRoad,GlasgowG12 0ZE

[email protected]


Offersonetooneconfidentialcounsellingwithfullyqualifiedcounsellorsforthoseaffectedbycancer.Thesessionscanbetailoredtoyourindividualneedsandcancoverawiderangeofissuessuchasanxiety,relationshipconcernsandfacingchange.

West Glasgow Carers Centre

CarersTrust 0141 959 9871 1561GreatWesternRoad,GlasgowG13 1HN

[email protected]

www.carers.org

Providesnotjustwrittenresourcesbutalsoadviceandemotionalsupport,aswellasayoungpersonspeersupportgroupandhelpforoldercarers.

18 Supportforchildren Supportforchildren 19

500 children a year are diagnosed with a brain tumour, and there are innumerable families living with the disease.Twothirdsofchildrendiagnosedareleftwithadisability.Familiescanfindcommunicationdifficult,andawarenessofbraintumoursinchildrenislow;thisisdespitethefactthatbraintumoursnowkillmorechildrenthananyotherillnessintheUK.Becauseoftheseuniqueandfrustratingchallenges,thereishelpavailableforyouandyourchild.

Supportforchildren


The Butterfly Project

ThePrinceandPrincessofWalesHospice

0141 429 5599 PrinceandPrincessofWalesHospice,71CarltonPlace,GlasgowG5 9TD

[email protected]

www.ppwh.org.uk/family-carers/how-we-can-help-you

Thispreandpostchildbereavementserviceoffersindividualsupporttoyoungpeopleandchildren(2to18years)aswellastheirparentsthroughone-to-onecounsellingandtherapy.Theyalsorunbereavementgroupsonaregularbasiswhichprovideasafe,friendlyplaceforchildrenandyoungpeopletoexpressandexplorehowtheythinkandfeelaboutthelossofalovedone.

Kids’ Days Maggie’sGlasgow


[email protected]


Theseregularkids’daysaimtogivechildrenwhoareaffectedbyanadult’scancerdiagnosistheopportunitytoaccessusefulsupportandinformationinanengagingway.Theygetthechancetodiscussthoughtsandfears,visitalocalhospital,putatoythroughtheCTscannerandtakepartinexpressivearttherapyclasses.Thedaysrunfrom10amto2pmandmustbeprebooked.

20 Supportlines Supportlines 21

Support lines are an invaluable service available to brain tumour patients and their carers.Theyareoftenavailablewhenaclinicianisn’t,andtheadvicecanbeobjective.Someofthehelplinesaredrivenbypatientandcarerexperience,meaningthepersonontheendofthephonemayknowexactlywhatyouaregoingthrough.Thephonesupportyoureceivemaynotconstitutemedicaladvice,butitwillcomplementitandhelpyoutoanswerquestionsyoumayhave.

Supportlines


brainstrust 24/7 Helpline

brainstrust 01983 292405 brainstrust,4YveryCourt,CastleRoad,Cowes,IsleofWightPO31 7QG

[email protected]


Withbrainstrust’s24/7, 365daysayearhelpline,patients,carersandfamiliescanpickupthephoneoremailandknowtheywillhaveanimmediate,personalresponse.

Macmillan Support Line


0808 808 0000 www.macmillan.org.uk Ifyouhavequestionsaboutcancer,needsupportorjustwantsomeonetotalkto,youcancallMondaytoFridaybetween9amand8pm.

Cancer Information Nurses

CancerResearchUK

0808 800 4040 www.cancerresearchuk.org IfyouhaveanyquestionsaboutcancerorneedmoreinformationyoucanspeakwithacancerinformationnursefromMondaytoFridaybetween9amand5pm.

22 Financialsupport Financialsupport 23

Having a brain tumour will, at some point, impact on you financially as well as physically and emotionally. Look this tiger in the eye.Themorepreparedyouare,themoreyouwillbereadyifyouneedadditionalsupport.Muchbettertobeproactive,thanreactive.Thegoodnewsisthatthereisawealth(pardonthepun)ofhelpoutthere.

Financialsupport


Macmillan Grants


0808 808 0000 Various [email protected]

www.macmillan.org.uk

Theseareoneoffpayments(around250pounds)foradults,youngpeopleorchildrenwithcancer.Toapply,askyourlocalhealthcareprofessionaltosupplyyouwithanapplicationform.Thegrantteamwillreviewtheapplicationandifapproved,paymentsaregenerallysentoutwithin3workingdays.

One-off and Recurrent Grants

TheAndrewandMaryElizabethLittleCharitableTrust

0141 221 8931 LowBeatonRichmondSolicitors,SterlingHouse,20RenfieldStreet,GlasgowG2 5AP

[email protected]

grants-search.turn2us.org.uk/grant/the-andrew-mary-elizabeth-little-charitable-trust-13654?iframe=False

Thegrantsareofferedtopeopleinneedofincomesupport,disabilitybenefitsorpensionswholiveintheGlasgowarea.

24 Complementarytherapies Complementarytherapies 25

There are many reasons why people choose to use complementary therapies.Somepeoplefindtheyhelpthemcopewiththestressescausedbycanceranditstreatments.Manytherapiesarerelaxing,andmayliftyourspiritswhenyouaren’tfeelingyourbest.Complementarytherapiesmayhelpyou:l feelbetterandimproveyourqualityoflifel feellessstressed,tenseandanxiousl sleepbetterl withsomeofyourcancersymptomsl withsomeofthesideeffectsofyourcancertreatmentl feelmoreincontrol

Readontofindoutwhatisavailableneartoyou,andplease,remembertoseektheadviceofyourdoctorbeforestartinganynewtherapy.

Complementarytherapies


Exercise and Relaxation Classes

Maggie’sGlasgow

0141 357 2269 Maggie’sGlasgow,GartnavelHospital,1053GreatWesternRoad,GlasgowG12 0YN

[email protected]

www.maggiescentres.org

Therearearangeofexerciseoptionsavailableatthiscentresuchasyogaandtaichi.Theclassesaretailoredtopeoplewithcancerandflexibletosuityourneeds.

brainstrust Hypnotherapy Service

brainstrust 01983 292405 Various [email protected]


Aprogrammeofhypnotherapyuniquelydesignedforpatientsandcarersaffectedbyabraintumourdiagnosis.Sessionsmaytakeplaceeitherfacetofaceoroverthetelephonedependingoncircumstances.

26 Complementarytherapies Complementarytherapies 27


Complementary Therapies

for Cancer


0141 337 8199 orFreephone0800 652 4531

TheCalmanCentre,75ShelleyRoad,

GlasgowG120ZE

[email protected]


Thisserviceoffersarangeofcomplementarytherapiestothoseaffectedbycancer.Therapiesincludereflexology,massage,reiki,andaromatherapy.Getintouchtofindoutwhichdaysthesetherapiesareavailableon.

Glasgow Therapy Sessions

MarieCurie 0141 557 7400 MarieCurieHospice,BalornockRoad,

GlasgowG213US

[email protected]

www.mariecurie.org.uk/help/hospice-care/hospices/glasgow/services/day-services#Complementarytherapies

Thereareawiderangeofsafe,naturalandrelaxingtherapiesavailableheretosupplementtraditionalcare.Therapiesinclude:acupressure,acupuncture,aromatherapy,hypnotherapy,Indianheadmassage,massage,reflexology,reiki,relaxationandshiatsu.ThesessionsareavailableforbothpatientsandcarersfromMondaytoFridaybetween10amand4pm.

28 Holidaysandshortbreaks Holidaysandshortbreaks 29

Going on holiday is a good way to relax and get away from things. Manypeopleliketoplanaholidayfortheendoftheirtreatment.Otherswanttogobeforeorevenduringtreatment.Whetheryou’retravellingforworkorplay,talktoyourdoctorsandnursestohelpyouplan.Theymaybeabletosuggestagoodtimetogo,aswellashelptodecidewhatisrealisticforyou.Herearesomepeoplethatcouldmakeorganisingyournextholidaythatbiteasier.

Holidaysandshortbreaks


Malcolm Sargent House

CLICSargent 01292 671233 MalcolmSargentHouse,24LinksRoad,Prestwick,AyrshireKA9 1QG

[email protected]

www.clicsargent.org.uk

LocatedonAyrshire’sstunningcoastline,MalcolmSargentHouseoffersholidaysforyoungpeopleaffectedbycancerandtheirfamiliesduringandaftertreatment.Theyalsoprovideshorterbreaksduringtheweekendsandinlowseason.

Calum’s Cabin in Rothesay

Calum’sCabin 07544 979538 Calum’sCabin,“Calenna”,MountstuartRoad,RothesayPA20 9LD

[email protected]

www.calumscabin.com

AcountrysideretreatontheislandofButewherefamilieswithachildwithcancercancomeandstay.Thecharityalsohelpswithtravelcoststotheisland.

The Kieran Mess Luxury Holiday Home

TheKieranMessFoundation

TheKieranMessFoundation,4SwintonPlace,TheFernsLawthorn,Irvine,AyrshireKA11 2EG

[email protected]

www.thekieranmessfoundation.org/holiday-home.html

TheyofferaluxuryholidayhomeatThurstonManorwhichprovidesarelaxingandcomfortableenvironmentforchildrenwithcancerandtheirfamilies.

30 Welfareandlegaladvice Welfareandlegaladvice 31

You may be entitled to a range of benefits which can make things easier for you. Butnavigatingthewelfaresystemcanbeahugechallenge,andsometimesyouneedsomeonewhocanguideyouthroughthemazeofhelpthatisavailable.Theseservicesmayalsobeabletoadviseonthingslikegettingabluebadge,yourrightsatworkandotherlegalissuessuchaswillsandpowerofattorney.

Welfareandlegaladvice


Benefits Advisor and Welfare Rights Service

Maggie’sGlasgow

0141 357 2269 Maggie’sGlasgow,GartnavelHospital,1053GreatWesternRoad,GlasgowG12 0YN

[email protected]

www.maggiescentres.org/our-centres/maggies-glasgow/

Adrop-inservicewhereyoucangethelponwelfarerightsfromMaggie’sownexperiencedandapproachablebenefitsadviser.ThecentreisopenMondaytoFridaybetween9amand5pm.

Glasgow Benefits Service

GlasgowCentralCitizensAdviceBureau

0141 552 5556 1stFloor,88BellStreet,GlasgowG1 1LQ

Submitemailenquiriesthroughthefollowingweblink:www.glasgowcentralcab.org.uk/email.html

www.glasgowcentralcab.org.uk/benefits.html

Atthisdrop-inyouwillfindexperiencedadvisorswhoaretheretohelpyouwitharangeofbenefitsissues,whetheryouareworking,unemployedordisabled.Theycantalkyouthroughthebenefitsyouarecurrentlyentitledtoandcanexplainhowchangesinthebenefitssystemwillaffectyou.

Macmillan Benefits and Rights Service


0141 301 7374 BeatsonWestofScotlandCancerCareCentre,1053GreatWesternRoad,GlasgowG12 0YN

www.beatson.scot.nhs.uk/content/default.asp?page=s21_7

Thebenefitssystemcanbecomplexandconfusing.Whatyouareentitledtodependsonfactorssuchasage,incomeandwhereaboutsintheUKyoulive.Hereyoucanfindoutaboutyourbenefitsrightsandwhocanhelpyoutoclaim.

32 Welfareandlegaladvice Welfareandlegaladvice 33


North Lanarkshire Benefits Advice



[email protected]

www.maggiescentres.org/our-centres/maggies-lanarkshire/whats-on/

Hereyoucantalktoatrainedbenefitsadvisoraboutfinancialandpracticalassistancethatyoumaybeentitledto.Assistanceincludeshelpwithfillingoutformstoappealingdecisionsonbenefitclaims.

34 Transportservices Transportservices 35

Getting around if you have a brain tumour can be hard. But it’s something you need to do.Whetherit’sfortreatmentathospital,ortocarryonlivingyourlifetothefullyouwillneedtotravel.Butmanyaffectedbyabraintumourareunabletodrive,andtaxisandpublictransportcanbeexpensiveandconfusing.Don’tworry–youarenotalonehere,andthere’squitealotouttheretogetyouonyourway.

Transportservices


Beatson Patient Transport

BeatsonWestofScotlandCancerCentre

0141 531 3737 BeatsonWestofScotlandCancerCareCentre,1053GreatWesternRoad,GlasgowG12 0YN

www.beatson.scot.nhs.uk/content/default.asp?page=s22_8_10

ThishelpfulserviceorganisestransporttotheBeatsonWestofScotlandCancerCentreforpatientsreceivingtreatment.

Disabled Persons Bus Pass

TransportScotland 0141 333 3211 TransportScotland,BuchananHouse,58PortDundasRoad,GlasgowG4 0HF

www.transport.gov.scot/public-transport/concessionary-travel-people-aged-60-or-disability

ThispassentitlespeoplewithadisabilitytofreeorsubsidisedbustravelsotheycangetaroundScotlandortheirlocalarea.

Volunteer Drivers

AccordHospice 0141 581 2000 AccordHospice,7MortonAvenue,PaisleyPA2 7BW

[email protected]

www.accordhospice.org.uk

Ifyouareunderthecareofthehospicetheyprovideavolunteerdriverservicewhereavolunteerwilltransportyoutohospitaltreatments.

36 Respiteandendoflifecare Respiteandendoflifecare 37

When you’re caring for someone full-time or for long periods, you need to have breaks otherwise you may start to feel stressed, resentful or even unwell.Andbelieveitornot,thepersonyouarelookingaftermaywantabreakfromyou!Herearesomeorganisationsthatcouldhelpyouunderstandrespitecare,andtheycanalsohelpyouwithplanningforcaretowardstheendoflife,shouldyouneedtodothis.

Respiteandendoflifecare


Specialist Respite Support

PrinceandPrincessofWalesHospice

0141 429 5599 PrinceandPrincessofWalesHospice,71CarltonPlace,GlasgowG5 9TD

[email protected]

www.ppwh.org.uk

Thishospicehasanin-patientwardwhichoffersacomfortableenvironmentforthosepatientsthatmaybenefitfromreceivingmorespecialistsupport.Thehospiceoffersshortstaystocontrolpainandmanagesymptomsandaservicewhichfocusesoncareinthefinaldaysoflife.

Paisley Specialist Palliative Care

AccordHospice 0141 581 2000 AccordHospice,7MortonAvenue,PaisleyPA2 7BW

[email protected]

www.accordhospice.org.uk

Serviceshereincludeanin-patientunit,daytherapy,patientandfamilysupportandcomplementarytherapies.Theservicesareavailabletobothpatientsandtheirfamilies.

Renfrewshire Palliative and End of Life Care

StVincent’sHospice

01505 705635 StVincent’sHospice,MidtonRoad,Howwood,Johnstone,RenfrewshirePA9 1AF

[email protected]

www.stvincentshospice.co.uk

Thishospiceoffersaspecialisedendoflifein-patientunit,adayhospicefocusingonpalliativecare,communitynursespecialistsfocusingonsupportivecare,aconsultant-ledpalliativemedicineoutpatientclinic,anoutpatientpainclinicandpatientfamilysupport.

38 Bereavementsupport Bereavementsupport 39

Bereavementsupport


Glasgow Bereavement Support

CruseBereavementCareScotland

0845 600 2227 CruseBereavementCare,CentreChamber,11BothwellStreet,GlasgowG2 6LY

[email protected]

www.crusescotland.org.uk

ThisserviceoffersregionalisedsupporttothelocalcommunityinGlasgow.Supportincludestelephonesupport,facetofacesupport,informativelocalleafletsandbereavementsupportgroups.

Bereavement Talking Therapy


0141 337 8199 orFreephone0800 652 4531

CancerSupportScotland,TheCalmanCentre,75ShelleyRoad,GlasgowG12 0ZE

[email protected]


Thesecomfortingone-to-onetalkingtherapies,runbytrainedcounsellors,canbespecificallytailoredforthosewhohaveexperiencedthelossofalovedoneduetocancer.

Overnight Telephone Counselling

BreathingSpaceScotland

0800 838587 VariouscontactcentresinClydebank,CardonaldandSouthQueensferry

[email protected]

www.breathingspace.scot

Thisserviceofferstelephonecounsellingwithspecialistadvisorswhowilllistenandassistyouwithyourconcernsaboutyourmood,thoughtsandfeelings.ThetelephonecounsellingserviceisopenMondaytoThursdayfrom6pmto2amandrightthroughouttheweekendfrom6pmonto6amonMonday.

Unfortunately not everyone survives having a brain tumour.Whenapersonyoulookafterdies,youmaybenotonlylosingalovedone,butasacareryoumaybelosingyoursenseofpurposewhenyourcaringroleends.Itmaynotfeellikeit,buttherearemanypeoplewhoyoucanturntoforhelpandsupport,includinghealthandsocialservicesprofessionalswhoarebecomingmoreawareofthisimpact.

Bereavementcareandsupportisavailabletocarers,familyandclosefriendsfromavarietyoforganisations.Familymembersandfriendscanalsoprovideemotionalsupport.

40 Bereavementsupport Bereavementsupport 41


North Lanarkshire Bereavement Support Group



[email protected]

www.maggiescentres.org/our-centres/maggies-lanarkshire/whats-on/

Thisgroupisledbyapsychologistandisaimedatpeoplewhohaveexperiencedbereavementduetocancer.Itprovidesanopportunitytotalk,expressemotionsandshareexperiencesinasafeenvironment.Italsoprovidesachancetomeetwithotherpeopleinasimilarsituationwhomayhelpyoudevelopnewcopingstrategies.

42 Whatcanbrainstrustdotohelp? Whatcanbrainstrustdotohelp? 43

Whatcanbrainstrustdotohelp?

HelpavailableAttimesitmayfeellikeit,butyouarenotalone.Everyoneinthebrainstrustcommunityhasexperienceofwhatitisliketobediagnosedandtolivewithabraintumour.Wecanhelpyoutofeellessisolated–weunderstand.Belowareexamplesofthehelpavailabletoyoufrombrainstrust.Don’thesitatetogetintouchandtalktopeoplewhohavebeenwhereyouarenow.We’llhelpyougetbackontopofthings.

Whatcanbrainstrustdotohelp?Formoreinformationaboutanyoftheseresources,visitwww.brainstrust.org.uk,[email protected] 292 405.

Resourcestokeepyouinformedl InformationStandardcertifiedinformation onourwebsitewww.brainstrust.org.uk.Clear,accurate,balanced,

evidence-basedandup-to-dateinformation,certifiedbytheInformationStandard.

l 24/7helpline Weknowthatyoudon’tjustneedtotalktosomeone9-5.

We’vebeenthere.Weknowthefearsandtheneedtotalktosomeonewhounderstandsatallhours.That’swhyyoucancallusanytime.Open24hoursaday,7daysaweek,thebrainstrusthelplineoffersbraintumourpatientsandcarerssupport,informationandpragmaticadviceoverthephoneandbyemail.Call01983 [email protected]

l Helpyoutounderstandtheimplicationsofthediagnosis Abraintumourdiagnosiscanbeveryscary,anditisdifficulttoidentify

whatyouneedandwanttoknow.Wecanchatthroughtheimpactwithyou,tohelpputyoubackincontrol.

l Interpretationofmedicalrecords Medicaljargonandterminologymaybeusedintherecords.

Ifyouchoosetolookatyourrecords(andyouareentitledto)youmayneedhelpunderstandingthem,sointerpretationcanbeprovided.Contactbrainstrustonhello@brainstrust.org.ukorcall01983 292405.

l Helpyouseekasecondopinion Wearemindfulthateveryonereactstoaseriousdiagnosisindifferent

ways.Itisyourrighttoseekfurtheropinions,andthiswillempowersomepeople.Somepeoplewouldprefernottoexercisethisright.Somepeopleprefertoknowaslittleaspossibleabouttheirdiagnosis;somepeopleliketorelinquishcontroloftheirsituationtoothers.Alloftheseareperfectlynormalandacceptablewaysofcoping.Andseekingsecond,eventhirdopinionscancauseconfusionandstress.Buttheycaninform,andhelpwithdecision-making.Theycanalsobereassuring.Wecanonlytalk


fromourexperience.Webelievethatyouneedtobeinformedtomakedecisions.Andthatmightmeangatheringinformationandthendecidingnottomakeadecision.That’sadecisiontoo!Formoreinformationonsecondopinions,visit‘Justbeentold?’onwww.brainstrust.org.uk/advice-symptoms.php

l Clearsignposting brainstrustcanpointyoutowardsvaluableresourcestohelpnavigate

yourjourney.

l www.braintumourhub.org.uk Createdforbraintumourpatientsandcarers,thebraintumourhub

isanauthoritative,easytonavigatedatabaseofbraintumoursupportresourcesandUKbasedbraintumourclinicaltrials.Itisintuitive,easytouse,developedwithclinicians,patientsandcarers,andconstantlyevolvingwithregularupdates.

Resourcestohelpyoufeelmoreincontroll Coaching Atbrainstrustwelisten,listensomemoreandthenaskquestions.

Wefocusonachievingspecificimmediategoals,whichrelatetospecificareas.Forexample,weighinguptheprosandconsofhavingaparticulartreatment,orovercomingaproblemwithcaring.Wealsoknowthatthroughcoaching,clientscanexperienceasenseofhealing,astheymakecourageousdecisionsabouttheirlivesandwork.Coachingfocusesonthefutureandthedevelopmentofaworkablesolution.It’saboutdevelopingstrategiesandclaritytoachieveabetterqualityoflife.

l Counselling Whenthereistoomuchdistressandapsychologicalinterventionis

needed,counsellingcanbeuseful.Itissuitableforsomeonewhoisstrugglingtocopeorfeelingveryanxiousanddepressedandthereforefindingithardtofocusonspecificimmediategoals.Counsellinghasabroaderfocusandgreaterdepththancoachingandsoisusuallyaslower-pacedintervention.Itisconcernedwiththeindividualandtheirrelationshiptoself,aswellaswiththeirfamilyandcommunities.Itislesssolutionfocusedthancoaching(sometimesthereisnosolutiontotheproblem)andinsteadaimstohelptheindividualmakesenseofthesituationinwhichtheyfindthemselvesinordertomakebetterdecisionsaboutwhattheywantandneedforthefuture.Insomesituationsformalcounsellingmaynotbeappropriateandinsteadasupportivelisteningrelationshipmightbemoreuseful.

l Hypnotherapy Thereisplentyofevidencethathypnotherapyhelpspeoplewith

cancerandthosewhocareforthem.Hypnotherapycanbeusedasacomplementarytherapyalongsideconventionalmedicaltreatmentsandforanumberofdifferentpurposes.Hypnotherapycanhelpbraintumourpatientsandcarersto:manageanxiety,reducestress,createadifferentexperienceofpain,buildconfidenceandoptimism,prepareforsurgeryandpromotepost-operativehealing,reducesideeffectsoftreatments,e.g.nauseaandfatigue,optimiseahealthylifestyletobuildresilience.


l SnaggleToothSplat www.brainstrust.org.uk/advice-resources.php#7

Writtenforbrainstrusttohelpparentcarersorpatientsbroachabraintumourdiagnosiswiththeirchildren.ItisabeautifullyillustratedbookandhasfeaturedintheBMAnewsletterandOncologynews.Theforwardhasbeenwrittenbythelovelyactressandbrainstrustsupporter,JulieWalters.Ifyouareaparentwhohasbeendiagnosedwithabraintumour,orarelookingafterapoorlylittlepatient,thenyoucanhaveacopyofthisbook,forfree.

l Who’sWHOinYOURclinicalteam www.brainstrust.org.uk/advice-resources.php#6

Manypatientsfindthattheyarelefttomanagetheircarepathwayforthemselves.brainstrusthasdevelopedthishandyresourcetohelpyounavigateyourjourney.Itoutlinesallthehealthcareprofessionalswhomaybeinvolvedinyourjourneyandtellsyouwhatitistheydo.

Written by Karen BoswellIllustrations by Jason Mortimer

Practicalresourcesyoucanpickupl Brainbox www.brainstrust.org.uk/advice-resources.php#2

Thebrainstrustbrainbox–the‘musthave’supporttoolkitforpeoplewithabraintumourdiagnosisandtheircarers.Weappreciatehowdifficultthingscanbeonceyouarediagnosedwithabraintumour;the‘4.00ammoments’,thetravellingtoandfromappointments,thestreamofquestionsthatpopintoyourhead,tryingtorememberthejobsofallthepeoplethatyou’llmeetonyourjourney,andknowingwhototurntoandwhen.Ajugglingactthatyoudon’tneedwhenyoujustwanttofocusyourenergyonfeelingbetter.Sotoassistbraintumourpatients,weprovidethisuniqueinvaluableaid.

l LittleWhiteBook www.brainstrust.org.uk/advice-resources.php#5

Acomprehensive,easytonavigatecompendiumofUKbraintumoursupportresources.

A compendium of brain tumour support resourcesEdition 1: September 2011

the little

bookwhite

Who’s WHO in YOUR clinical team

Version 2.1: December 2013

HYLYW-2.1 version.indd 1

10/02/2014 15:43

A selecti

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ation

which ca

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48 Whatcanbrainstrustdotohelp?

Resourcestohelpyoufeellesslonelyl Meetup www.meetup.com/brainstrust

AtabrainstrustMeetup,membersofthebraintumourcommunitygettogethertohavefun.Nomatterwhereyouareonyourjourneyorwhatroleyouhave(suchascarer,patient,healthcareprofessional)youcanshare

experiences,andseekinformationfrompeoplewhoknowwhatyou’regoingthrough.Butonlyifyouwantto.Feelfreetojustcomealongandenjoy.PastMeetupshaveinvolvedpizzaandwine,pubgrub,andcreamteas.

l facebookbrainstrustbraintumoursupportgroup www.facebook.com/groups/braintumoursupportbrainstrust/

Ifyouareonfacebook,youcanjointhisclosedsupportgroupwherealotofveryfriendlypatientsandcarershangout.Itisareallywarmandwelcominggroupwhowillcomfortyou,answerquestions,makeyousmile,andimportantlyareinthesameboatasyou.

l facebookUKbraintumourcarersgroup www.facebook.com/groups/ukbraintumourcarers/

ThisisagrouppageforcarersofpeoplewithbraintumoursintheUK.Itcanbeveryhardandlonelybeingacarer,sothisgroupisforanycarerstoaskothersquestionsaboutcare,offeradvice,haveageneralchat,agoodlaughorrant/soundoffwhenyouneedtowithoutoffendingorupsettingthosetheylookafter.

There are over 55,500 people living with a brain tumour in the UK.brainstrust is the charity and the community that’s here to help thesepeople and those who look after them, whoever they are and no matter where they are on their journey.

We know we don’t have all the answers, but chances are we know someone who does. Get in touch today, for 24/7 help on 01983 292 405or email [email protected]


The little white book – Glasgow, edition 1,published by brainstrust May 2016, due forreview May 2017.

© brainstrust 2016.Registered charitable trust, brainstrust is a registered charityin England and Wales (1114634), and Scotland (SC044642)

Documents

Glasgow and surrounding areas - brainstrust tumour support Glasgow.pdf · Glasgow and surrounding areas. Contents ... Welfare and legal advice 30 ... , The Vera Wolstencroft Children