NHSNHS Improvement

Cancer

HEART

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CANCER

DIAGNOSTICS

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Effective follow up: Testingrisk stratified pathways

NHS Improvement - Cancer

May 2011

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The purpose of this document is tohighlight the work being led byNHS Improvement to supportdelivery of the National CancerSurvivorship Initiative (NCSI) Vision1

for those living with and beyondcancer. This survivorship agenda is apriority which was outlined in theCancer Reform Strategy2 (2007)and Improving Outcomes; aStrategy for Cancer3 (2011).

As part of the NCSI, NHSImprovement is working inpartnership with patients, clinicalteams, Department of Health andvoluntary agencies to improve theeffectiveness and quality of servicedelivery for those living with andbeyond cancer. A key aspect of thisis ensuring effective pathwaymanagement across organisationalboundaries, with the patient at theheart of the decision makingprocess.

Traditionally, the focus of cancerservice improvement has been onthe referral to treatment pathway,with the emphasis post treatmenton surveillance and monitoring forfurther disease. Primary care has, inthe past, seen the management ofcancer patients to be the provinceof the specialist cancer team untilthey have been discharged to thecare of their GP.

There are estimated to be around1.7 million (2008) people inEngland living following a diagnosisof cancer, with this number risingaround 3.2% per annum.

Introduction

Effective follow up: Testing risk stratified pathways

3

Key emerging principlesfor future care andsupport for thoseliving with and beyondcancer:

• Information and educationthat enables choice andconfidence to self manage will be provided at the right time tomeet the patient’s individual needs

• Remote monitoring which provides safe and effective monitoringat a distance with timely intervention if required

• Care coordination as a function that ensures that the needs of theindividual are met seamlessly across organisational and clinicalservice boundaries. All patients will have appropriate timelyaccess to the right service, first time, when problems arise

• The patient is the only constant through their journey of care.A hand held record could enhance communication acrossproviders of care or in an emergency.

www.improvement.nhs.uk/cancer/survivorship

Introduction

Adam Glaser, Clinical Director,National Cancer SurvivorshipInitiative

Gilmour Frew, Director - NHSImprovement

• Risk stratified pathwaysof care based on the tumourtype, treatment and personalcircumstances of the individual

• All patients will be offereda personalised care planthat focuses on their individualneeds along with a treatmentsummary for the patient andthose involved in their care

As the incidence and prevalencecontinues to rise, the currenttraditional approach to managingpatients is:• Not always meeting theindividual’s needs

• Based on a medical (illness)model rather than a selfmanagement (wellness) model4

To get to where we are today wehave undertaken scoping work toinform us about perceptions,preferences and models of currentcare delivery across England:

• In 2007, a survey of 3,000patients and professionalsinvolved in providing cancer carein hospital and primary care wasundertaken. The purpose of thesurvey was to identifyperceptions and preferences forfollow up care. There wasconsensus as to why follow uphappens, though there weredifferences in the relativeimportance of the responses.With regard to preferences,patients preferred what theyhave experienced5.

• In March 2008, a meeting ofnearly 200 patients inpartnership with MacmillanCancer Support6 was held toexplore follow up options for thefuture. The conclusion at the endof the day was that patientswere not adverse to alternativeapproaches to follow up so longas they have:• Good quality, pertinentinformation

• Rapid access to specialist careas needed

• A care plan which is agreed byall those providing care and isowned by them.

4 Introduction

A PATIENT’S VIEW

Huge advances have been made in cancer treatment over past years, andsurvivorship rates are increasing all the time. However, a by-product of thissuccess is that cancer patients typically need supporting for many yearsbeyond the end of their primary treatment. The care planning needsinclude not only monitoring for possible recurrence of the original illnessbut also a whole range of unrelated conditions that can arise because ofthe long term effects of the original cancer treatment. Patients may go formany years leading normal lives, requiring only occasional surveillance, butif more serious medical issues do arise it is very important that they caneasily access the specialist medical attention they need. Clear and flexiblerecording of medical history has an important role to play here. If patientsare in a different part of the country from the location of their initial cancertreatment, or if they need to see specialists in a different medical areabecause of the late effects of treatment, the doctors and nurses need easyaccess to the patient's medical history so that they can readily understandthe context of new symptoms or conditions.

The NHS Cancer Improvement Programme seeks to address all these issues. As a patient who has livedwith the effects of cancer over many years, I am hugely encouraged to see the progress being made.I am also very pleased to have the chance to contribute as a patient representative, and work with theexcellent team of professionals taking the work forward under Gilmour Frew's leadership.

Michael Prior, Cancer Patient

5Introduction

• During summer 2009, a rapidreview of follow up7 care andsupport was undertaken acrossEngland using a questionnairefor clinical teams across threetumour types; breast, colorectaland prostate. The findings of thereview showed a predominantlymedical model of follow up carewith 'one size fits all' the norm.For many patients follow up carewas managed by clinical nursespecialists through consultantprotocols. There were pockets ofinnovative practice whereindividuals were self managingwith open access if required.

• Over a period of 15 months in2009/10, 28 pilot sites acrossEngland tested elements ofsurvivorship care. Eleven ofthese sites were testingapproaches to assessment andcare planning and use of theTreatment Summary. In practice,for the majority of test sites,there was a separation betweensurvivorship support services andclinical follow up. The work inthe pilot sites was captured inThe Improvement Story So Far8,Picker testing elements of careevaluation9, a summary of thetesting of assessment and careplanning10 and Treatment RecordSummaries11

A UNIQUE PERSPECTIVE...

Many of you will know me from mywork as a project manager for theNational Cancer SurvivorshipInitiative (NCSI), however, what youmay not know is that I am a survivorof ovarian cancer (10 years now). Ihave also been a carer for mydaughter who was diagnosed withovarian cancer nearly 11 years ago(at the age of 19) and who is also asurvivor and now a very active andbusy young lady. An unbelievablecoincidence but even more sobecause I was the gynae-oncologyspecialist nurse in the team thattreated my daughter. This unique situation has given me adifferent perspective on cancer and the impact it has on patientsand their families. In learning how to manage cancer in my ownlife, I realised that there was a lot more we could do to supportthose who were living with the disease and I have been fortunateto have had the opportunity to contribute to these developmentsthat can make a real change. I believe that by identifying peoples’needs by careful assessment and care planning and with the rightsupport in place, we can make risk stratification work to improvethe quality of survivorship. Better patient information andeducation for survivorship will give people the opportunity to takecontrol of their lives again. It has been a privilege for me to be ableto work with NHS Improvement and the NCSI to make living withand beyond cancer an active and fulfilling experience for thosewho are fortunate enough to survive.

Noëline Young, ProjectManager – NCSI

6 Introduction

• In the summer of 2010 clinicalconsensus meetings were held todevelop risk stratified pathwaysof care for six tumours; breast,colorectal, lung, prostate, headand neck and myeloma. Theprototype summary pathwaysare contained within thisdocument in each of thetumour sections.

• In the autumn of 2010, aneconomic evaluation todetermine the cost of five yearsof follow up after treatmentfor the service and the patientwas undertaken for breast,colorectal, lung, prostate andmyeloma patients.

Vanessa Brown, NationalImprovement Lead, NHSImprovement

Anne Wilkinson, NationalImprovement Lead, NHSImprovement

The outcomes from these pieces ofwork have provided the scope forfurther testing. This work willconsist of the testing of riskstratified pathways of care andtwo critical enabling projects;remote monitoring and carecoordination. It needs to beremembered that the care andsupport of individuals followingtheir cancer treatment does nothappen in isolation but is part ofthe seamless provision of care fromexperiencing symptoms until heend of their life. This ongoingtesting work will be the focus ofthe remainder of this document.

Sue O’Neil, PA - NHSImprovement - Adult Survivorship

7The hypothesis - testing risk stratified pathways of care

This phase of testing is taking awhole system approach looking toredesign the pathways of care infour tumour sites with the focuson risk stratification. The resultingmodel of care, when tested,should provide early evidence onthe benefits of this approachcompared to the currentwidespread traditional model ofcare. This is in keeping withcurrent policy of care closer tohome and increasing theproportion of self managed carefor those living with and beyondcancer. Given the nature of cancersurvivorship, evidence will accrueover time and, this current phaseof testing will require datacollection to continue in the longerterm to ensure the full impact ofrisk stratified pathways is captured.

The overall direction of the work isled by an NHS ImprovementDirector and National Clinical Lead,supported by a NationalImprovement Team and NationalClinical Advisers. The mandate forthis work is through the NationalCancer Survivorship Initiative(NCSI) Steering Group, CancerProgramme Board and NHSImprovement Executive Team.

Regardless of whether individualshave been treated with curative orpalliative intent, the same modelshould apply with risk stratificationinto an appropriate level of care.This should take account of the

The hypothesis - testing risk stratifiedpathways of care

TestingRisk Stratified

Pathways of Care13 tumour projects,

in 7 test sites

3 levelsof care

4 tumourtypes: breast,

colorectal, lung& prostateIncorporating

testing of keyenablers:

Remote monitoringCare coordination

Provision ofAssessment

and Care PlansTreatmentSummary

disease process, the treatmentreceived and the individual’spersonal circumstances. There aretwo essential underpinningenablers without which the modelmay not achieve the full potential.The key enablers are remotesurveillance which ensures patientsafety at a distance, and carecoordination which should ensureservices and communicationchannels function acrossorganisations and appearsseamless to the individual.

The testing hypothesis is thatthrough risk stratifying intoappropriate level(s) of care therewill be:

• An improvement in theexperience and patient reportedoutcomes of care from baseline

• A 50% reduction in outpatientattendances from the traditionalmodel

• A 10% reduction in unplannedadmissions from baseline.

8 The hypothesis – testing risk stratified pathways of care

Model of Care: Living Withand Beyond Cancer

The national test sitesThere are seven national test sitesworking on 13 adult tumourprojects. The testing will becompleted by December 2011. Thereport on this phase of testing,including the evaluation, will becompleted by April 2012. Therewill be, as previously mentioned, aneed for ongoing measurement toevidence the longer term benefitsof this risk stratified model of care.

National Cancer SurvivorshipInitiative (NCSI) - AdultPrototype Sites (2011)

Hull and East YorkshireHospitals NHS Trust

1

Ipswich Hospital NHS Trust2

Luton and Dunstable HospitalNHS Foundation Trust

3

North Bristol HospitalNHS Trust

4

Guy’s & St Thomas’ NHSFoundation Trust

5

Hillingdon Hospital NHS Trust6

Brighton and Sussex UniversityHospitals NHS Trust

7

1

23

4

7

5 6

9The hypothesis – testing risk stratified pathways of care

cancer diagnosis e.g. spinal cordcompression followingradiotherapy and there will beelements which are generalisablee.g. physiotherapy or dietetics,across the different tumour typesand also to non cancer conditionsand diseases.

Key elements to support selfmanagement• Information and educationappropriate to the individualsneeds

• Key contacts for care/support inand out of hours for cancer andnon cancer related problems

• Appropriate timely access if thecondition changes

• Effective care coordination• Effective remote monitoring asappropriate.

Risk stratificationAs a result of the pilot phase of thetesting and consensus meetings toagree the prototype pathways ineach of the tumours the differencein risk stratification for eachtumour became apparent. Thepercentages in the table oppositewere agreed as the hypothesis forthe proportion of patients likely tobe risk stratified to each pathway.During the testing, clinical teamswill be identifying the criteria forstratifying into the different levelsof care and whether the suggestedproportions are applicable inpractice.

Key assessment/reassessmenttriggersThere is an assumption that allpatients will be offered a care planupdated when reassessment takesplace, have a timely treatmentrecord summary updated andcommunicated appropriately aftereach phase of treatment. With thepatient’s consent this should beshared with those providing orsupporting care delivery. It isrecommended that every patientdiagnosed with cancer is providedwith a hand held record, either inpaper or electronic format, whichcontains information pertinent totheir ongoing management -whether this is self orprofessionally managed.

The key trigger points forassessment or reassessment alongthe pathway of care will dependon the disease process, thetreatment and the individualpatient circumstances.

Treatment summaryThe treatment summary shouldsummarise the current state andalso the signs and symptoms thatboth the individual andprofessionals providing care shouldbe looking out for. Informationand education should be tailoredto the individual through theassessment process and be part oftheir care plan. Education andsupport will also be required acrossthe clinical community. Goodcommunication in a timely manneris critical between professionalsand with the individual who isliving with or beyond cancer.This is therefore about a packageof care for the individual which isseamless across organisationalboundaries, with the right care, atthe right time, first time.

Relationship between cancerand other diseases/conditionsThere will be elements of thepathways which are unique toindividual tumour types and also toindividuals living following a

SelfManagement

70%

40%

15%

40%

SharedCare

10%

25%

60%

30%

ComplexCare

20%

35%

25%

30%

Breast Cancer

Prostate Cancer

Lung Cancer

Colorectal Cancer

Risk stratification proportions table

Quality, Innovation, Productivity and Prevention (QIPP)

10 The hypothesis – testing risk stratified pathways of care

HES data will provide aretrospective picture of changesover time. It is recognised thatthere will be a need for furtherevaluation of this work over the

The QIPP agenda is a nationalpriority and this programme ofwork is aligned to thosepriorities. Improving thequality of patient care is at theheart of the NCSI agenda,empowering patients to livewith and beyond cancer. Thetraditional model of cancerafter care does not encouragepatients to exercise choice andcontrol in their journey.Also there is little evidence tosupport the current traditional‘one size fits all’ model offollow up offered to manycancer patients around thecountry.

Quality: The introduction ofrisk stratified pathways of carewill result in more effective,efficient service delivery whichshould enhance patientexperience and reportedoutcomes of care. This willalso encourage supportive selfmanagement rather than apaternalistic model of care.

Innovation: The pathways andtheir constituent parts areinnovative in that, as far as weare aware, there are no clinical

MeasuresVarious measures will be collectedlocally and nationally:

• The number of prospectiveoutpatient follow up slots saved,based on point of pathwaywhere patients risk stratified tono further routine follow-up care

• The number and percentage ofpatients risk stratified to each ofthe levels of care within eachtumour type

• The number of unplannedadmissions for patients with aknown diagnosis of cancer

• The number of referrals to careand support services (internaland external)

• Ipsos MORI is working inpartnership with national andlocal teams to undertake aPatient Reported Outcome andExperience Measure survey as abaseline prior to testing of riskstratified pathways and repeatedfor a cohort of patients stratifiedinto the new pathways inJanuary/February 2012

• Evaluation of care coordinationand remote monitoring iscurrently under discussion.

EvaluationThe evaluation of this programmeof work will come from the IpsosMORI experience/ patient reportedoutcome of care surveys, theevaluation of each of the enablingprojects, care coordination andremote monitoring, local audits,experiences and improvementwork being undertaken in each ofthe test sites and their reportedlearning and results. The national

next few years and beyond inorder to measure and assess theongoing impact and full extent ofthe savings associated with thismodel of care.

teams nationally orinternationally who have pulledtogether elements of care into a‘total’ package driven byeffective risk stratified pathwaysof care for those living with andbeyond cancer. This is asignificant cultural shift forindividuals who have had adiagnosis of cancer and for theclinical teams supporting them.

Productivity: Throughdelivering risk stratifiedpathways the reduction inunnecessary appointments willrelease resources to help meetaccess targets and providecapacity to support patients ingreater need. Bettercoordinated and informed careand support will contribute to areduction in unplannedadmissions.

Prevention: The emphasis willbe on secondary preventionthrough having an effectivepathway that is personalised tothe individual and encourages ahealthy lifestyle through exerciseand healthy living.

11National Cancer Survivorship Initiative Support Projects

The NCSI goal for the prototypesites is to provide evidence based,best practice integrated carepathways for breast, colorectal,prostate and lung cancer patientswhich can be rolled out acrossthe NHS. There is an offer ofsupport to the prototype sitesincorporating one or more of thefollowing within their testingwork:

Benefits made clear12 - AMacmillan interactive online tooloffering benefits advice andinformation for patients, fullsupport to use the tool andsupporting materials are available.

Health and Well Being Clinics -Health and Well Being Clinics areone off events, a groupprogramme delivered by a mix ofprofessional staff supported bytrained and inspired volunteers.The clinics offer expert advice onhealth and wellbeing, access tosupport groups, reliableinformation, financial benefits andsupport and give people theconfidence and skills to managetheir condition themselves as faras possible.

Supported self management -To enable supported selfmanagement to take placechanges need to be made in skillsdevelopment programmes forprofessionals, self managementsupport options forpatients/survivors and institutionalsupport for service redesign.

Supported self managementdemands a cultural shift that viewsthe person with cancer as anexpert in themselves and thehealth care professional as expertsin cancer care both workingtogether in partnership to achievethe best outcome for the personwith cancer. A number ofvoluntary sector partners in carecan offer support to establish arange of self managementopportunities, including training offacilitators, support forprofessionals to developconfidence in engaging patientswithin a more collaborativeapproach to care.

Physical activity - There is robustevidence of the effectiveness ofphysical activity for those livingwith and beyond cancer. It canhave a positive effect on the sideeffects of radiation, chemotherapy,immunotherapy hormone therapyand steroid therapy. Additionalsupport for prototype sites isavailable to integrate evidencebased physical activity promotionand services into standard patientcare, at appropriate points acrossthe patient care pathway, andchampion the promotion ofphysical activity across oncologyand primary care for cancerpatients.

National Cancer Survivorship InitiativeSupport Projects

Vocational Rehabilitation (VR) -The VR project provides servicesand information to help peoplewith cancer remain in or return towork. The NCSI VocationalRehabilitation Project hasdeveloped a four level model ofVocational Rehabilitation whichprovides early information andsupport at Levels 1 and 2 and aVocational Rehabilitation CaseManager at Levels 3 and 4 withreferrals to specialist services suchas physiotherapy and selfmanagement programmes egfatigue and pain management.Macmillan can offer support toestablish vocational rehabilitationservices within the prototype sites,provide advice and access to e-learning programmes andinformation, both printed and online and provide peer support froman established network of VRpilots.

Many of the above projectswithin NCSI are coordinated withMacmillan Cancer Support. Thistesting will contribute to the bestpractice evidence base, and to theoverall aim of the NCSI to ensurethat all cancer survivors receive thehelp and support that they need.For further information aboutMacmillan and other tumourspecific voluntary organisationsinvolved in providing support tothe test sites please see theresource page in the tumoursections and at the end of thisdocument.

12 Enabling projects: Care coordination

Care coordination is a functionnot an individual.“

”

13Enabling projects: Care coordination

This will help to facilitate efficienttransfers of care throughout thepathway, wherever they occur,whether to vocationalrehabilitation, physiotherapy,voluntary services, social care, orend of life care.

A working group consisting ofclinicians, patients and servicemanagers are guiding and advisingthe direction of this enablingproject. The group has developedthe guiding principles fordelivering good care coordinationas detailed below:

Guiding principles• Good communication andprofessional relationships, formaland informal, between thepatient, their carer/family andthe care or support team

• Proactive and prompt access andintervention when needed

• Appropriate provision of correctinformation to enable individualchoice and control

• Proactive monitoring asnecessary (remote monitoringwhere possible)

• Transition of care along thepathway should appear seamlessto the person receiving the care

• Provision of correct informationfor healthcare professionals tosupport effective patientmanagement in the event ofcare delivery away from theirusual care team e.g. hand heldrecord with the componentslisted:

Care coordination is not oneperson’s role, job or responsibility.It is the joining up of services,coordination, information andcommunication between caregivers, treatment providers, thoseliving with and beyond cancer andtheir families that creates aseamless experience of care.

There are models for carecoordination in other policy areas:The single assessment process forolder people13, person-centredplanning for people with learningdifficulties14 and The CareProgramme Approach15 (CPA) forpeople with a mental illness. All ofthese referred to the importance ofassessment, care planning, carecoordination, review and theimportance of joint working acrosshealth and social care within theirspecialist areas which resonateswith our hypothesis and prototypepathways.

As good care coordination willprovide the best opportunity forpatients to be confident to selfmanage their lives with andbeyond cancer, it is important forall tumour teams that carecoordination is addressed whilsttesting the new risk stratifiedpathways. Building relationshipsand networks is crucial toimproving care coordination - notjust within the NHS, but beyond tosocial care, charities, communitycare providers and other agenciesthat meet the needs of individuals.

Enabling projects: Care coordination

14 Enabling projects: Care coordination

Hand held record components• The treatment summary givesinformation on diagnosis,treatment, the clinicalmanagement plan andincludes signs and symptomsto look out for. (The care planmay be integrated into thedocument or may be a separatedocument)

• A care plan, where it is notincorporated within thetreatment summary, should beavailable for all patients andshould outline needs identified,who is taking action to meetthose needs and timescales

• Contact numbers for supportservices appropriate to theirneeds

• Telephone numbers to contact ifpatients have cancer related ornon-cancer related symptoms,in or out of office hours

• A self assessment should beavailable for completion, shouldpatients feel their condition orneeds change (This should besent to the appropriate contact)

• A section for recording anyissues the patient isexperiencing, what they havedone about it and whether itresolved the problem. Thisinformation will be useful wherethe individual’s care crossesorganisational or professionalboundaries.

TestingCare coordination will be tested aspart of the overall flow of thepathway. Any issues may also bethe cause of unplanned admissionsor contacts with the health careteam which will be monitoredthroughout the testing. There willalso be a care coordination audittool for teams to use locally toconsider their local stakeholders,geography, facilities and servicesoutside health, efficiency ininteragency communication andpatient information and feedback.It is hoped that this approach willalso prompt other agencies tothink about their owncommunication and coordination.This will be reviewed after testingto identify where things haveimproved and areas for furtherwork.

EvaluationThe evaluation of carecoordination will centre on clearlydefined questions set in focusgroups led by external facilitators.This will include the usefulness andeffectiveness of the Hand HeldRecord from both the patient andstaff perspective. With consentfrom participants we will useselected quotes and detailedthematic analysis to produce clearfindings in separate patient focusgroups and health, social and carestaff focus groups

The audit tool results will form partof the evaluation. There will bevarious national and localmeasures collected regarding theeffectiveness of care coordination.

Guiding principlesfor delivering goodcare coordination

• Good communication andprofessional relationships

• Proactive and prompt accessto appropriate service

• Timely information provisionand support

• Seamless care transitionacross services and providers

• Hand held record with‘Then, Now and When’

• Proactive monitoring,remotely where appropriate.

15Enabling projects: Remote monitoring

Prostate cancerThe main indicator for prostatecancer is the prostate specificantigen test (PSA). Whilst not theonly indicator of recurrent disease,it is the test used routinely tomonitor patients in the follow upperiod for a minimum period offive years and often for life. ThePSA tolerance level is based on thetreatment received.

From a clinical perspective thesystem needs to provide data thatdemonstrates PSA resultsnumerically and graphically overtime as a gradual increase in PSAlevels, even if levels are withintolerance, can indicate diseaserecurrence.

Colorectal cancerSurveillance tests followingtreatment for colorectal cancercomprise regular carcinoembryonicantigen (CEA) tests, CT scans andcolonoscopy or sigmoidoscopyprocedures depending on the siteof the tumour. The exact frequencyof tests is determined locally andre-investigation prompted if thereis any clinical, radiological orbiochemical suspicion of recurrentdisease.

The remote monitoring solution forcolorectal will need to access avariety of test results from varioussources to inform the decisionmaking process.

BackgroundDuring meetings to seekagreement on the new prototypepathways of care, it becameapparent that access to a safereliable system that enablesclinicians to monitor large numbersof stable patients in thecommunity without the need for aface to face follow upappointment was a key enabler fortesting risk stratified pathways ofcare. Such systems wereconsidered appropriate for breast,prostate and colorectal specialtieswhere routine standard testsapplied and where interpretationof results could take placeremotely.

Responding to the opportunity thisoffered, a small working groupcomprising test site clinicians andIT representatives was establishedand the key requirements for thesystem identified. We are indebtedto Mr Jon McFarlane, ConsultantUrologist at the Royal UnitedHospital, Bath and his team whohelped inform the development ofthe solution for prostate cancerand on which the colorectalsolution will also be based.

Enabling projects: Remote monitoring

1. To pull patient data set information from PAS via the localcancer information system

2. To pull test results from local diagnostic IT systems3. To store key diagnostic and key patient history data4. To log any relevant treatment history during monitoring

period including a log of patient contacts5. To set individual patient range/tolerances for specific tests6. To schedule tests based on user definable follow up schedules7. To hold a range of template letters to enable communication of

results to patients and GPs by post or electronically8. To include an alert system that identifies test results for review,

due dates exceeded or test result that exceed tolerance9. To provide a summary history and treatment page with test

results shown numerically and graphically10. To record the outcome of any event or test11. To provide standard and ad hoc reporting and routine monitoring

function and be amenable to clinical audit12. To be NHS and HL7 compliant with secure access13. To use a common file format for all data export to be able

to import the data into local IT systems if required.

REQUIRED FUNCTIONALITY OF REMOTE MONITORING:

16 Enabling projects: Remote monitoring

Breast cancerFor patients following treatmentfor breast cancer annualmammography should be offeredto patients for five years or untilthey reach screening age (inEngland this is 47 years). We knowthat many patients continue toattend outpatient clinics simply toreceive the results of theirmammogram test.

Given that some good systemsalready exist for breastmammography a decision wasmade by the working group to useexisting systems where possiblerather than reinvent the wheel anddevelop a specific module withinthe new IT solution. The twomodels for mammographysurveillance that have beenidentified are:

Model 1 - On site BreastScreening Unit (BSU) - Patientsare recalled for annualmammography with appointmentsbooked on standard PAS clinicbooking system (papermammography clinic) with thereports generated by screeningradiologists on standard radiologyreporting system (CRIS). The BSUsend results of the mammogram tothe patient, GP and surgeon.Abnormal results referred to theMDT and recalled to the BSU forfurther investigations if required

Model 2 - Off site BreastScreening Unit - Patients arereferred for annual mammogramto the National Breast ScreeningService and managed through theNBSS System using an identicalNBSS system to that for high riskpatients with familial disease.Results are sent by letter topatients and copied to the GP.Abnormal results are referred tosurgeon to arrange recall andfurther investigations. Server andlicence costs approximately£5,000.

The IT solution being testedThe IT developer in partnershipwith colleagues at North Bristol

NHS Trust, The Royal UnitedHospital in Bath and prototype testsites have been testing theproposed solution for PSAmonitoring over recent weeks.

Once this and the testing of theinterface connectivity are completethe solution for prostate cancerPSA monitoring will roll out to theprototype sites for use from earlyJuly. The modifications forcolorectal cancer will be developedduring June with rolloutanticipated from August.

The following screenshots provideexamples pages from the proposedsolution using fictitious data.

Screenshot 1: The system automatically draws patient dataset and GP detailsfrom the Trust Patient Administration System (PAS). This ensures data is alwaysaccurate and up to date.

17Enabling projects: Remote monitoring

An evaluation of the prostate andcolorectal modules will take placein early 2012 following the initialsix months of use along with otherlocally developed systems whereTrusts have used or developed theirown solutions for this purpose.

Screenshot 2: The PSA tracking page automatically draws PSA test resultsfrom the Trust pathology systems and plots on a graph below for easyinterpretation.

Screenshot 3: The ‘Alert’ page identifies patients where an action is requiredeither that a test result requires review, a delay has occurred in the test beingtaken or to indicate that a test tolerance limit has been exceeded.

18 Breast cancer

Breast cancer

IntroductionBreast cancer services mustaccommodate an increasingnumber of cancer survivors, dueto the increased incidence relatedto an ageing population andimproved survival due toimproved detection andtreatment.

The National Cancer SurvivorshipInitiative seeks to improve patientexperience and outcomes andmeet the needs of an increasingnumber of survivors, whilstensuring services are sustainableand safe.

Models of care are in development which will be risk stratifiedaccording to individual patients needs, disease and co-morbidities.This will result in removal of regular planned clinical follow up formost patients (approximately 70%) with information and supportfor self management.

There are five breast multidisciplinary teams which are testingdifferent aspects of the new models of care including: personalisedpatient treatment summary and care plan; patient education;mammography surveillance with robust recall systems; assurance ofprompt access and intervention when required.

As the newly appointed breast cancer clinical adviser I look forwardto working with the clinical teams in Hull, Ipswich, Brighton,Hillingdon and North Bristol as they commence testing thehypothesis based on the risk stratified pathways of care.”

Dorothy Goddard, National Clinical Adviser - Breast Cancer

Breast cancer overviewBreast cancer is the most commoncancer in the UK. Over 50,000new cases are diagnosed per year,including approximately 300 menwith breast cancer. Breast cancer isone of the few cancers whereincidence rates are higher for moreaffluent women and there is aclear trend of decreasing ratesfrom least to most deprived. Theincidence is gradually increasingdue to the ageing population(81% in women aged over 50 yrs).A report by Cancer Research UKestimates that:

• The lifetime risk of beingdiagnosed with breast cancer isone in eight for women in theUK

• Female breast cancer incidencerates in Britain are increasing,and have increased by more than50% over the last 25 years

• In the last decade, female breastcancer incidence rates in the UKhave increased by 3.5%.

Survival rates for breast cancerEngland are over 80% at five yearsand have been improving for 40years.

The initial treatment phase caninclude surgery, chemotherapy,radiotherapy, hormone therapy -sometimes continuing withhormone therapy for several years.

Dorothy Goddard, NationalClinical Adviser - Breast Cancer

“

19Breast cancer

Follow up after treatment forbreast cancer is one area wheresome work has already been doneon reducing unnecessaryoutpatient follow upappointments. This has beenachieved by introducing drop inclinics, open access clinics and alsoempowering patients to selfmanage from the end oftreatment, accessing the CNS byphone and only attending clinicswhen deemed necessary.

The main reasons cited fortraditional regular follow upappointments for breast cancerare:

• Discussing or prompting annualmammography as part ofmonitoring post treatment

• Monitoring of patients onhormone therapy

• Psychological support andreassurance for the patient

• Facilitation of audit.

Recurrence is estimated to beapproximately 10-20% within tenyears of diagnosis, although mostrecurrences occur within five yearsand the likelihood varies with thetype of cancer. Patients should beaware of the symptoms and signsto look out for and when to seekhelp. Most recurrences aredetected by the patientsthemselves or on mammographysurveillance rather than at routineclinical follow up.

There is variation nationally on thefrequency and duration of followup. In the ‘Rapid Review of Followup Practice in England’7 thefrequency of follow up rangedfrom one outpatient visit to 12visits or more over a five yearperiod. Some patients arefollowed up for life.

NICE guidelines16 suggest thefollowing surveillance tests:

• Offer annual mammography toall patients with early breastcancer, until they enter theBreast Screening Programme orfor five years for patientsdiagnosed with early breastcancer that are already eligiblefor screening

• Do not offer ultrasound or MRIfor routine post-treatmentsurveillance in patients who havehad early invasive breast canceror ductal carcinoma in situ(DCIS).

Breast cancer treatments canlead to late effects, such aslymphoedema from radiotherapy,infertility and prematuremenopause from chemotherapy,osteoporosis from hormonetherapy, cardiac damage fromchemotherapy or radiotherapy andvery importantly, breast cancersurvivors do have an increased riskof significant depression.

Various charities are supportingthe teams in delivering this testingwork such as Breast Cancer Care,further information can be foundon the resources page.

This programme aims to addresssurvivorship needs and will focuson the assessment and careplanning especially after end oftreatment, information for thepatients and the GP and onimproving access to supportservices to enable people to returnto as normal a life as possiblefollowing their treatment.

20 Breast cancer

Risk Stratified Breast Cancer Pathway - For Testing

Diagnosis

Follow upassessment

riskstratification

andTreatmentSummary

All otherpatientsFrequency

of follow updetermined

by need

Education,support

services andoptimisation

for selfmanagement

CURATIVE INTENTRadical

/adjuvant treatment

PALLIATIVE INTENTOther treatment or

management

Assessmentcare plan

commenced

MDT

Reviewcare plan

Care coordin

Reviewcareplan

LOW RISK PATIENTS

KEY FEATURES

Risk stratification decision pointsFor the majority of patients with low risk factors for disease,treatment effects and individual circumstances it may be feasible torefer to a self managed pathway with annual mammogramsimmediately after the end of treatment.

Review care plan (following treatment)The period following end of treatment is key to establishing anappropriate care plan that include supportive care services to enablethe patient to self manage.

21Breast cancer

Routinemammography

as perprotocol

Results topatient &

GP bypost/email

Reviewhormonetherapy

patients at3 & 5 years

Clinician ledfollow up

Shared care- estimate

10%

Selfmanagement

- estimate70%

Complex care- estimate

20%

Shared care

Selfmanagement

Complex care

Transition toend of life

care

nation

Frequencydetermined

by need

Review pathwaychoice each visit

MDT/Consultantled follow up

Frequencydetermined

by need

Review pathwaychoice each visit

Patientrecalled

forreview

NORMAL

RESULT

ABNORMAL

RESULT

Cha

ngin

gne

eds

may

trig

ger

furt

her

risk

stra

tific

atio

nRe

view

care

plan

aspa

thw

aych

ange

s

Referral for annualmammography

Support services of particular relevance to breast cancer patients• Diet and nutrition – advice on diet especially where there is

concern over weight changes.• Exercise – there is increasing evidence that physical activity

helps recovery and reduces risk of recurrence. Behaviouralchanges require investment of time, expertise, training andencouragement.

• Peer support - talking to others about their cancer experiencesand meeting others living beyond cancer as positive role models.

Remote monitoringTo incorporate the scheduling and monitoring of annualmammograms for five years with results reviewed by the team andpatients recalled to clinic if results are found to be abnormal.

Entry into the National Breast Screening Service Programme if overscreening age or auto recall as appropriate until reach the upperscreening age range. Open access back into the service is availableat all times.

22 Breast cancer

The National Cancer SurvivorshipInitiative seeks to improvepatient experience andoutcomes and meet the needsof an increasing number ofsurvivors, whilst ensuringservices are sustainableand safe.

“

”Dorothy Goddard, National Clinical Adviser - Breast Cancer

23Breast cancer

Current serviceThe Park Centre for Breast Careopened in Brighton in November2008 as the first unit of its kind inthe country, offering the latestmammography technology and alloutpatient services under one roofas part of Brighton and SussexUniversity Hospitals (BSUH). Ourbreast screening service is currentlyrated in the top 10% in the UK bythe National Breast ScreeningProgramme.

The unit diagnoses around 575new breast cancers a year. Mostsurgery takes place at The PrincessRoyal Hospital, Haywards Heathwith radiotherapy at the mainRoyal Sussex County Hospital inBrighton. The Trust is planning tobe a test site for the 23 hour bedmodel for breast surgery.

Our current breast cancer followup protocol includes six consultantled appointments over five yearsbefore discharge to the GP.

In 2009, the team trialled an‘information day’ for patients andcarers that proved very successfuland recognised the opportunitythat such an event could offer aspart of a redesigned pathway ofcare.

Testing“Building on our earlier work weare really keen to establish regularinformation ‘events’ as part of ourmainstream service with aparticular focus on weightmanagement, exercise andvocational rehabilitation. Our firstevent is planned for September”said Venessa Neylen, ClinicalServices Manager. “We will holdthe first event in the modern postgraduate centre which offers goodnon clinical facilities for suchevents. We are well on the road toagreeing the agenda andarrangements for the day andhope that many patients will beable to attend.”

We are planning to test an end oftreatment assessment using the‘Distress Thermometer’, thepreferred tool across our Trust. Wealso plan to use the ‘Breast CancerCare’ care plan booklet and CDwhich also allows space for localinformation and support groups.We are also testing the treatmentsummary to help improvecommunication with GPs to assistthem with their role in supportingpatients in primary care.

Our clinicians are currently workingon the revised protocol for riskstratifying patients for follow upthat will result in a reduction inunnecessary outpatient visits formany patients.

Finally, one of the key enablers forour new care pathway will be asystem for arranging annualmammograms. We are workingwith NBSS to see if their system forthis purpose, which will also helpus improve the system forscreening high risk familialpatients.

Richard SimcockBreast Clinical Lead andConsultant Clinical Oncologistrichard.simcock@bsuh.nhs.uk

Anne JacksonLead Nurse – Breast Canceranne.jackson@bsuh.nhs.uk

Venessa NeylenProject Managervenessa.neylen@bsuh.nhs.uk

Brighton and Sussex University Hospitals NHS Trust

24 Breast cancer

Simon Cawthornsimon.cawthorn@nbt.nhs.ukAjay Sahuajay.sahu@nbt.nhs.ukSasirekha Govindarajulusasirekha.govindarajulu@nbt.nhs.ukBreast Clinical Leads and BreastSurgeons

Jane BarkerSenior Clinical Nurse Specialistjane.barker@nbt.nhs.uk

Dany BellProject Managerdany.bell@nbt.nhs.uk

Current serviceThe breast cancer service for theTrust will be based at SouthmeadHospital from June and is wheresurgery will take place.Chemotherapy and radiotherapy isdelivered at University HospitalsBristol NHS Foundation Trust. Weare currently centralising all breastservices across the city toSouthmead Hospital.

Across the City we seeapproximately 700-800 new breastcancers a year. We are in theprocess of implementing the 23hour ambulatory mastectomymodel and have well establishednurse led follow up clinics forbreast cancer patients.

A member of the team said “Wehave been running patient ‘lookafter yourself’ days for about nineyears and as a team have used thisproject to share and expand thismodel to develop living wellcourses with clinical psychologyand Penny Brohn Cancer Care. Wehave previously reduced follow upto one year”.

TestingWe have recently expanded our‘look after yourself’ programme inpartnership with the Penny BrohnCancer Centre developed ‘livingwell’ courses and a ‘selfmanagement’ coursewith clinical psychology.

We will be testing the newpathway to empower patients toself manage following an initialpost treatment with annualmammography and no routinefollow up.

We have an automated call andrecall system for mammographythat is linked with the screeningservice when patients reach 50.

We will be further developing ourlocal Client RelationshipManagement System toincorporate the findings from thedistress thermometer and anelectronic care plan and treatmentsummary that will be shared withpatients and GPs.

We are currently looking at optionsavailable for a hand held record forcancer patients.

We will be collecting data onunplanned admissions, prospectivefollow up slots saved for patientsself managing and referrals tosupport services.

North Bristol Hospital NHS Trust

25Breast cancer

Current serviceThe breast service for the Trust isbased at Hillingdon Hospital wherethe majority of surgery takes place.Chemotherapy and radiotherapyare provided at Mount VernonCancer Centre. The unit seesapproximately 170 new breastcancers per annum.

The self management model ofafter care has been establishedover an eight year period with themajority of breast cancer patientsbeing offered a self managementpathway post treatment. Patientsreceive telephone support fromtheir original breast care nurse anddirect open access back to either abreast or oncology clinic to a nurseled clinic if required.

Quotes from members of theteam:

“This project gives us theopportunity to formalise theprocess for risk stratifyingpatients to a self managementpathway and to work on theautomation of the call andrecall system we have for theannual mammograms thatpatients require.”

“Whilst we have excellentsupport services available at theLinda Jackson and YiewsleyCentres we recognise that thisis not local to all our patients.We will be working with theNCSI project leads to improveaccess to exercise, health andwellbeing and vocationalrehabilitation to help us tomaximise opportunities for ourpatients in these areas.”

“As professionals we are usingthis project to streamline all ourprocesses and information sothat we are consistent andstructured in our approach as ateam.”

TestingWe will be using the distressthermometer as both our assessmentand stratification tool for patients atthe end of their breast cancertreatment. The distress thermometerwill be used to address patient’sneeds and develop an individualisedcare plan. This work will continuefrom that developed by our lungcancer team who took part in theassessment and care planning pilotphase.

We will also be testing this pathwayin patients diagnosed with advanceddisease and developing relevantinformation packs in conjunctionwith the Information Prescribingpilot. We will also be working withBreast Cancer Care to evaluate theirresources for women with breastcancer.

The Hillingdon Hospitals NHS Foundation Trust

Amy GuppyBreast Clinical Lead andConsultant Clinical Oncologistaguppy@nhs.net

Elizabeth PattersonClinical Nurse SpecialistElizabeth.Patterson@thh.nhs.uk

Nadine TeutonClinical Nurse SpecialistNadine.Teuton@thh.nhs.uk

Terry-Anne LeesonClinical Nurse SpecialistTerry-Anne.Leeson@thh.nhs.uk

Juliette WalkerProject ManagerJuliette.Walker@thh.nhs.uk

26 Breast cancer

Current serviceThe breast unit is based at CastleHill Hospital where all breastsurgery, chemotherapy andradiotherapy take place. The unitsees approximately 509 new breastcancers per annum. We aresuccessfully running a nurse ledsurvivorship programme

Quote from member of team:

“Having already recognised theneed for support for patients inthe survivorship phase of theircancer journey we had alreadybegun looking at assessingpatients one year post diagnosisto help provide services toenable them to self manage.

Following an assessment ofsupport services we recognisethe need to work with the NCSIproject leads to further developsupport for health andwellbeing, exercise, selfmanagement and vocationalrehabilitation in some areas ofour patch.

As a team we are using thisproject to help us to formalisesome of the processes we arealready working with toempower patients to selfmanage.”

TestingWe are using an assessment toolbased on the Macmillansurvivorship assessment andcompleting a care plan for patientsas part of their survivorshippathway.

We are testing the TreatmentSummary as we recognise that GPsneed more information to helpthem to play their part and alsosee this as an excellent summary tohave in the patient’s notes at thehospital should they present again,as a summary for the MDT to seeat a glance the previous diagnosis,treatment and outcomes.

We will be collecting keymeasurement data throughout andhave implemented a NBSS systemto track the call and recall ofmammograms required for ourpatients.

Hull & East Yorkshire Hospitals NHS Trust

Miss Penny McManusBreast Clinical Lead and BreastSurgeonpenelope.mcmanus@hey.nhs.uk

Philippa RobinsonClinical Nurse Specialistphilippa.robinson@hey.nhs.uk

Lesley PeacockProject Managerlesley.peacock@hey.nhs.uk

27Breast cancer

Current serviceOur breast unit is at IpswichHospital NHS Trust where themajority of surgery, chemotherapyand radiotherapy takes place. Theunit sees approximately 300 newbreast cancers per annum and areconsidering entering the enhancedrecovery programme in the nearfuture. We have successfully runnurse led follow up clinics for anumber of years, which we areplanning to extend as part of thetesting. We already have anestablished remote monitoringsystem for call and recall forannual mammograms before thetransfer to the Breast Screeningservice.

“Having already recognised theneed for support for patients inthe survivorship phase of theircancer journey we had alreadybegun assessments andeducation for patients that havecompleted treatment in allcancers. A four week educationprogramme or twice yearlyeducation days are available toempower patients to selfmanage to suit individual need.Working with the NCSI projectleads, local authorities and PCTsas part of the Fit Villages schemeon exercise and rehabilitation tosupport self management forcancer patients and we plan tofurther develop these areas. Wehave already provided trainingfor local fitness instructors toencompass cancer specific issuesto enable our patients to accesslocal leisure facilities.”

Louise Smith, Project Manager.

TestingWe will be using the AngliaNetwork wide approach toassessment, using an adapteddistress thermometer as ourassessment tool and completing acombined treatment summary andcare plan in one document forpatients as part of the hand heldrecord which we are testing.

We are planning to test anelectronic ‘live’ copy of thisdocument that can be accessed byhealth care professionals at anytime in the pathway. This shouldgreatly improve care coordination.We will be collecting keymeasurement data on the numberof patients self managing,outpatient visits and unplannedadmissions.

The Ipswich Hospital NHS Trust

Miss Caroline MortimerBreast Clinical Lead andBreast Surgeoncaroline.mortimer@ipswichhospital.nhs.uk

Liz SherwinBreast Clinical Lead andBreast Oncologistliz.sherwin@ipswichhospital.nhs.uk

Rachel HockneyClinical Nurse Specialistrachel.hockney@ipswichhospital.nhs.uk

Louise SmithProject ManagerLouise.m.smith@ipswichhospital.nhs.uk

28 Colorectal cancer

Colorectal cancer

Introduction

I think it is important we all

support this survivorship

programme that turns the

spotlight on the care provided

for colorectal cancer patients

following completion of

treatment. With the emerging

evidence around diet and

exercise in prevention and

recovery and changes to

secondary treatment options

the future holds many

opportunities to improve the

quality and effectiveness of the care we provide. Furthermore with

the introduction of the standards for patient satisfaction this work

should give us the tools to deliver the quality of follow up our

cancer patients require. I look forward to supporting the clinical

teams at Guy’s and St Thomas’ and North Bristol as they develop

and test these new risk stratified pathways of care and to support

and advise on the development of a computerised remote

monitoring system that allows the monitoring of surveillance tests

and avoids the need for unnecessary follow up visits.”

John Griffith, National Clinical Adviser - Colorectal Cancer

Colorectal cancer overviewColorectal cancer is common withover 36,000 new cases diagnosedper year. The incidence is graduallyincreasing due to the ageingpopulation (74% in people over 60years). Incidence rates vary acrossthe country suggesting thatlifestyle and environmental factorsmay also be contributory factors.Survival rates across England arearound 52% at five years andwhilst increasing, still lag behindother European countries. Thesepoor results however, relate to thehigh proportion of patientspresenting with advanced disease.Those patients who undergopotentially curative resection haveequivalent results to those inEurope.

The majority of patients havesurgery, plus or minus chemoradiation therapy during theirinitial treatment phase.Approximately 20% of thesepatients have stomas and of theseabout 80% will have their stomareversed after about a year.

John Griffith, National ClinicalAdviser - Colorectal Cancer

“

29Colorectal cancer

The management of colorectalcancer follow up after treatmentvaries although there is generalagreement that the reasons forfollow up after curative treatmentare for:

• Detection of recurrent ormetastatic disease at an early orpre symptomatic stage whenother curative treatment isfeasible

• Provision of psychologicalsupport and assurance for thepatient

• Facilitation of audit.

The incidence of diseaserecurrence is estimated to be 9 -13% and in the vast majority ofcases recurrence occurs within twoyears of completion of multi-modality primary treatmentsuggesting that more intensivesurveillance during this time wouldbe beneficial.

Nurse led follow up iscommonplace in many colorectalunits however there is variationnationally on the frequency andduration of follow up and therange of surveillance tests offered.In the ‘Rapid Review of Follow uppractice in England7 follow upvisits in this tumour group rangedfrom 5 -13 visits over five years(average 8.4 visits) across the 21colorectal units surveyed.

On surveillance tests the recentdraft NICE guidelines17 suggest:

• A minimum of two CTs of thechest, abdomen and pelvis in thefirst three years

• Regular serum carcinoembryonicantigen (CEA) tests. An elevationin CEA after apparently curabletreatment is frequentlyassociated with recurrentdisease. The exact frequency oftests should be determined bycancer networks

• Offer a surveillance colonoscopyat one year after initialtreatment. If this investigation isnormal consider furthercolonoscopic follow up after fiveyears.

Treatment for colorectal cancerleads to very specific side effectsrelating to bowel function, sexualfunction, psychological issues andactivities of daily living. Manypatients have ongoing needs andoften encounter fragmented andpoorly coordinated follow up care.

The teams will aim to addressthese aftercare needs and willfocus on the assessment and careplanning especially after end oftreatment, information for thepatients and the GP and onimproving access to supportservices to enable people to returnto as normal a life as possiblefollowing their treatment.

30 Colorectal cancer

Risk Stratified Colorectal Cancer Pathway - For Testin

Diagnosis

Follow upassessment

riskstratification

andTreatmentSummary

Follow upand test

surveillancefor 18 months

then reviewrisk

assessment

Education,support

services andoptimisation

for selfmanagement

CURATIVE INTENTRadical

/adjuvant treatment

PALLIATIVE INTENTOther treatment or

management

Assessmentcare plan

commenced

MDT

Reviewcare plan

Care coordin

Reviewcareplan

Duke A, T1, T2

KEY FEATURES

Risk stratification decision pointsFor patients with low risk disease it may be feasible to refer to a selfmanaged pathway with remote surveillance immediately after theend of treatment. For the remainder this risk assessment will takeplace at 18 months following end of treatment.

Review care plan (following treatment)The period following end of treatment especially following pelvicradiotherapy is associated with distressing bowel dysfunction anddietary problems.

Support services of particular relevance to colorectal cancer patients• Bowel dysfunction – advice and exercises to help overcome bowel

leakage and incontinence following surgery.• Sexual dysfunction – issues around lack of libido and changes

to body image.

31Colorectal cancer

g

Routinesurveillance

tests

Results topatient &

GP bypost/email

Continuesurveillance

as perprotocol

Clinician ledfollow up

Shared care- estimate

30%

Selfmanagement

- estimate40%

Complex care- estimate

30%

Shared care

Selfmanagement

Complex care

Transition toend of life

care

nation

Frequencydetermined

by need

Review pathwaychoice each visit

MDT/Consultantled follow upvia joint clinic

Frequencydetermined

by need

Review pathwaychoice each visit

Patientrecalled

forreview

NORMAL

RESULT

ABNORMAL

RESULT

Cha

ngin

gne

eds

may

trig

ger

furt

her

risk

stra

tific

atio

nRe

view

care

plan

aspa

thw

aych

ange

s

Enrol on remotemonitoring system

• Diet and nutrition – advice on what to eat and foods to avoidto cope with specific problems after surgery, due to stoma or asresult of chemo or radiotherapy treatment.

• Peer support - talking to others about their cancer and how tofind ‘bowel cancer buddies’.

• Exercise – there is increasing evidence that physical activity helpsrecovery and reduces risk of recurrence for patients with bowelcancer. Behavioural changes require investment of time,expertise, training and encouragement.

Remote surveillanceThis will incorporate the scheduling and monitoring of surveillancetests for CEA, CT scans and colonoscopy procedures. Test resultswill be reviewed by the team and patients recalled to clinic if resultsare found to be abnormal. Open access back into the service isavailable at all times. Development of a computerised trackingsystem to facilitate this is underway.

32 Colorectal cancer

Mark GeorgeColorectal Clinical Lead andColorectal Surgeonmark.george@gstt.nhs.uk

Roni CummingsClinical Nurse Specialistroni.cummings@gstt.nhs.uk

Claire McgillyClinical Nurse Specialistclaire.mcgilly@gstt.nhs.uk

Jannike NordlundProject Managerjannike.nordlund@gstt.nhs.uk

Current serviceThe Colorectal Service for the Trustis based at St Thomas’ Hospitalwhere the majority of surgerytakes place. Chemotherapy isprovided on the Guy’s site andradiotherapy provided at StThomas’. The unit seesapproximately 140 new colorectalcancers per annum and we are aspecialist centre for lower rectalcarcinomas and anal cancer. Theenhanced recovery programme iswell established and we have beensuccessfully provided follow upclinics that are run by nurses formany years. Appointments arealigned to the five year testschedule after which most patientsare discharged to their GP.

We have a number of excellentsupport services available to ussuch as the Dimbleby Cancer CareCentre for psychological supportand access to complementarytherapies.

We are keen to strengthen ourpatient care both in terms of howwe assess needs and how werespond to these so that patientshave a greater understanding oftheir disease, how to cope withany side effects of treatment andways to encourage selfmanagement. As professionals weare using this project to reallyexplore how we can offer moretailored aftercare based onpatients individual needs.

TestingWe started our patient-centredprogramme by reviewing andunderstanding our current carepathways and by speaking to ourpatients groups. Overall thepatients were very satisfied withtheir care but agreed that therecould be more initiatives put inplace to support patients aftertreatment has completed.

Underpinning all our work will beassessment and care planning. Wealready undertake a fullassessment of the patient at

diagnosis and this will now bereviewed at end of treatmentwhere patients will be supportedand signposted if required to othernew support services we willmaking available such as theexercise programme.

Our first information day forcolorectal cancer patients andcarers is scheduled for this summerand we have been working withour partner team in N. Bristol,Claire Taylor (Lecturer in ColorectalNursing at the Burdett Institute)and the Health and Well beingpilot sites to develop a suitableagenda for this.

During the summer we plan tointroduce the concept of remotemonitoring to reduce the need forhospital visits that add no clinicalvalue. We plan to use an ITsolution, that will enable remotemonitoring, reducing patients’needs to attend clinic, either theone developed in North Bristol orour own that will fully integratewith our existing informationsystems.

We will be collecting keymeasurement data throughout,conducting a patient survey andcollecting information on patientreferrals and prospectiveoutpatient appointments saved.

We believe that this project willlead to further improvements inthe quality and effectiveness of ouraftercare services.

Guy’s and St Thomas’ NHS Foundation Trust

33Colorectal cancer

Current serviceColorectal cancer surgery isundertaken at Frenchay Hospitalwith chemotherapy andradiotherapy delivered at UniversityHospitals Bristol NHS FoundationTrust.

The unit sees approximately 370new colorectal cancers a year. Wehave a successful enhancedrecovery programme that is in itssecond year and established nurseled follow up clinics.

A team member said:

“As professionals we have usedthis project to test differentmodels of self managementand living well programmesand subsequently to testdifferent models of follow-upmanagement, includingtelephone follow-up andremote surveillance.”

TestingWe have already developed anin-house self managementprogramme in collaboration withclinical psychology and health andwellbeing courses working inpartnership with the Penny BrohnCancer Centre and will be testingthe new pathway to improvesupport for patients to selfmanage and give them confidencein the remote monitoring system.

We are leading the work on thenational solution for remotemonitoring and will be furtherdeveloping our local ClientRelationship Management Systemto incorporate the findings fromthe distress thermometer and anelectronic care plan and treatmentsummary that will be shared withpatients and GPs.

We are currently looking at optionsavailable for a hand held record forcancer patients.

We will be collecting data onunplanned admissions, prospectivefollow up saved for patients selfmanaging and referrals to supportservices.

North Bristol NHS Trust

Anne PullyblankColorectal Clinical Lead andColorectal Surgeonanne.pullyblank@nbt.nhs.uk

Mike ChadwickConsultant Colorectal Surgeonmichael.chadwick@nbt.nhs.uk

Sarah JohnClinical Nurse Specialistsarah.john@nbt.nhs.uk

Dany BellProject Managerdany.bell@nbt.nhs.uk

34 Lung cancer

Lung cancer

Introduction

The issue of how best to follow

up lung cancer patients is

difficult. This is because it is

almost an evidence-free area –

as has been recognised in the

recently updated NICE Lung

cancer guidance18. These

projects, whilst not research,

are well positioned to provide

an excellent level of practical

experience of different ways of

following up such patients,

both to optimise the experience

of care (for them and their families) and to use scarce healthcare

resources in the most efficient and cost-effective way. Many

patients end up in hospital for problems that could well be

prevented or solved in other ways. This work has the potential to

greatly improve the quality of care in this difficult disease.”

Dr Mick Peake, National Clinical Lead, Lung Cancer

Lung cancer overviewLung cancer is the commonestcause of cancer deaths in the UK(22% of all cancer deaths – morethan that for colorectal and breastcancer combined). Patients oftenpresent late in the course of theirdisease (>60% have advanced/incurable disease at presentation).The median survival from time ofdiagnosis is measurable in months.The average one year survival isaround 30% with a five-yearsurvival of 8%. Those diagnosedwith early disease are often offeredsurgery at a specialist centre andthese make up the majority ofpatients who survive beyond fiveyears. Smoking is still the singlegreatest avoidable risk factor andcauses around 90% of lung cancerin men and 85% in women.

The diagnosis and staging processis complex and crucial to makingoptimal decisions about a widerange of treatment options.Treatment rates are very variablearound the UK and the need forhighly expert teams to managethese patients is more importantthan ever. Patients are often highlysymptomatic with significanthealth needs and frequentutilisation of out of hours care.Many patients are newlydiagnosed with lung cancer duringan emergency admission (38%),some via A&E and present withsignificant symptoms.

Dr Mick Peake, National ClinicalLead, Lung Cancer

“

35Lung cancer

Follow up care tends to be tailoredto individual patient needs ratherthan a prescriptive follow upprotocol. This is made morecomplex because of the fact that,commonly, a number of differentspecialities are involved in the careof any one patient (sometimes indifferent hospitals). Increasingly,and where CNS resources exist,nurse led follow up clinics havebeen established and studies haveshown that patients and GPs arehighly satisfied with this model ofcare. Several units have alsointroduced telephone assessmentsand an open access service intoclinics should the need arise.

The purpose for this project is totest the degree to which riskstratified pathways can be appliedto lung cancer patients and work iscommencing to undertake aretrospective audit of cancerpatients to help determine thecriteria that could be used for thefuture.

The use and provision ofmultidisciplinary support (usuallyinvolving several different providersacross the local health economy) isnot well understood and has notpreviously been described withinthe UK. Nevertheless,comprehensive seamless careacross the local health economy isrequired as patients transition fromactive treatment to palliativetreatment and end of life care.

The two test sites will also beundertaking a data gatheringexercise to look at the type andextent to which lung cancerpatients and their carers use healthand social care services over thenext six month period.

This primary aim of collecting datais to define:1. The extent of multi-agency

support provided to lung cancerpatients

2. The quality of survival3. Key components or patterns of

care that enhance quality ofcare and to provide baselinemeasurements on which to basefuture service improvementprogrammes.

36 Lung cancer

Risk Stratified Lung Cancer Pathway - For Testing

Diagnosis

Joint lungcancer clinicto discusstreatmentoptions

PALLIATIVE INTENTAdjuvant treatment/

other treatment/management

Follow upassessment

riskstratification

andTreatmentSummary

Follow up.Frequencyand type

determinedby need

Education,support

services withfocus on selfmanagement

whereappropriate

CURATIVE INTENTSurgery/radical

/adjuvant treatment

NO TREATMENTPatient choice

Assessmentcare plan

commenced

MDT

Reviewcare plan

Supportivecare

Care coordin

Reviewcareplan

KEY FEATURES

Risk stratification decision pointsFor patients treated with curative intent it may be feasible to referto a self managed pathway once surgery is complete and enrol ontoa remote surveillance system with surveillance chest X-rays annuallyfor 5 years. For all other patients a self management pathway isunlikely to be an option unless through patient choice.

Care planningThe life expectancy for patients diagnosed with lung caner is poor andneeds will change frequently and sometimes rapidly. Teams need toprovide a very flexible approach to care and for some this may need areview of the care plan at each contact with the health careprofessionals. The care plan review is usually commenced by the lungnurse specialist but can be updated by other professionals involvede.g. community nursing teams. The care plan should be kept in thepatient hand held record.

37Lung cancer

Scheduledchestxray

Results topatient &

GP bypost/email

Continuemonitoring

Clinician ledfollow up

Shared care- estimate

60%

Selfmanagement

- estimate15%

Complex care- estimate

25%

Shared care

Selfmanagement

Complex care

Transition toend of life

care

nation

Frequencydetermined

by need

Review pathwaychoice each visit

MDT/Consultantled follow up

Frequencydetermined

by need

Review pathwaychoice each visit

Patientrecalled for

review

NORMAL

RESULT

ABNORMAL

RESULT

Cha

ngin

gne

eds

may

trig

ger

furt

her

risk

stra

tific

atio

nRe

view

care

plan

aspa

thw

aych

ange

s

Support services of particular relevance to lung cancer patients• Diet and nutrition – Fatigue and breathlessness can result in

poor appetite and nutrition and the advice and input from adietician can be extremely useful, especially for those who livealone or are isolated.

• Breathlessness – the actual experience or fear of breathlessnessrequires specific advice and support for this group of patients andtheir carers. Physiotherapy advice via individual referral orbreathlessness clinics helps many patients and practical adviceon coping mechanisms at home.

• Anxiety and Depression – psychosocial issues are extremelycommon in lung cancer survivors. Uncertainty about diseaseprogression is a common observation and less so in those on acurative pathway where the follow up plan is clearer. Patientsoften need specific help and advice and often benefit formreferral for specialist psychological support.

• Sleep problems – common in long term lung cancer survivors.Impacts on quality of life.

38 Lung cancer

Sarah DoffmanClinical Lead for project andConsultant Respiratory Physiciansarah.doffman@bsuh.nhs.uk

Louise MasonConsultant SpecialistPalliative Carelouise.mason@bsuh.nhs.uk

Eileen BaldockClinical Nurse Specialisteileen.baldock@bsuh.nhs.uk

Leanne PiccoClinical Nurse Specialistleanne.picco@bsuh.nhs.uk

Ben DoffmanProject Administratorben.doffman@bsuh.nhs.uk

Current serviceBrighton University Hospitalsees approximately 250 newlydiagnosed lung cancer patientsannually at the cancer centre inBrighton or at the Princess RoyalHospital in Haywards Heath.Patients suitable for lung surgeryare referred to Guy’s and StThomas’ Hospital.

Work has already been carried outwithin the lung cancer service atBSUHNT, initiating assessment andcare planning and the use of aTreatment Record Summary. This isnow fully embedded in currentpractice.

The service was redesigned and arapid access cancer clinic (alsoreferred to as the combined cancerclinic) introduced where new and

follow up patients are seen. Thisclinic allows symptomatic patientsto self refer or professional-triggered appointments for urgentassessment by either a respiratoryor palliative care physician. Thecapacity for rapid access wasincreased by minimisingunnecessary follow upappointments by contactingpatients by telephone a weekbefore their clinic, cancelling andrescheduling appointments if theydid not wish to be seen. Byavoiding emergency/unscheduledattendances at A&E with thefacility to rapidly access lungcancer specialists, there was areduction in bed days attributableto lung cancer by 329 over sixmonths, a reduction in scheduledroutine follow ups by one thirdand an improvement in patientsatisfaction with the service.

TestingWe plan to apply a retrospectivemodel for assessing risk to allpatients diagnosed over a 12-month period (May 2010 – May2011). The results of this will becompared with the actual care thatpatients received to assess thevalidity of the stratification modelbefore any changes will be madeto the way services are currentlydelivered.

A health and wellbeing clinic willbe developed as part of a trial toassess its utility and inform furtherresearch into its application in lung(and possibly breast) cancer. Theclinic will be staffed by alliedspecialists in physiotherapy,dietetics/nutrition, Citizen’s

Advice Bureau staff (to advise onfinancial and benefits matters),psychological services andMacmillan Nurse Specialists. Datawill be collected on uptake of theservice, patients’ perception of itseffectiveness, unscheduled hospitaladmissions and cost implications aswell as data on patients’understanding of their disease andhow to manage symptoms andwhen/how to access healthcare ifneeded.

Brighton and Sussex University Hospitals NHS Trust

39Lung cancer

Current serviceThe lung cancer unit is based atCastle Hill Hospital where themajority of surgery, chemotherapyand radiotherapy take place. Theunit sees approximately 500 newlung cancers per annum.

We have recently introduced EBUSfor the trust; this is a valued tool inthe diagnosis and staging of lungcancer.

A team member said “We havetested nurse led follow up clinicsas part of the pilot phase of theNHS Improvement adultsurvivorship programme and foundthis to be extremely beneficial topatients and staff. We hope tobuild on this testing to refine theseprocesses in this testing.”

TestingWe will continue our nurse ledclinics and using the SPARCassessment tool and testing thecare plan for our patients.

We will be testing the TreatmentSummary process and trying toimprove our communication withGPs and primary care colleagues.

Following an assessment ofsupport services we recognise theneed to work with the NCSIproject leads to further developsupport for health and wellbeing,exercise, self management andvocational rehabilitation across ourgeographical area and also look atthe speed and response of referralsfor financial support for lungcancer patients where time is ofthe essence.

We will be collecting data on theunplanned admissions, prospectiveoutpatient slots saved andagencies referred to as part of thisproject.

Hull & East Yorkshire Hospitals NHS Trust

Gavin AndersonLung Clinical Lead and ConsultantRespiratory Physiciangavin.anderson@hey.nhs.uk

Clinical Nurse Specialist TeamTelephone: 01482 461090

Ruth HudsonProject Managerruth.hudson@hey.nhs.uk

40 Prostate cancer

Prostate cancer

Introduction

The rising incidence of prostate

cancer and an ageing

population have led to a

marked increase in demand for

urology outpatient

appointments. Commissioners

faced with the need to pay for

the most effective care, closer

to home where possible, have

wanted to restrict hospital

follow up. There has been

disagreement among urologists

whether prostate cancer

patients can be safely followed up in the community. The

hypothesis that risk stratified pathways and an IT based remote

monitoring system will lead to safe, convenient and cost effective

follow up for patients will be tested. I am looking forward to

working with the clinical teams in Ipswich, Luton, Hillingdon and

North Bristol as they commence testing the hypothesis.”

Roger Kocklebergh, National Clinical Adviser - Prostate Cancer

Prostate cancer overviewProstate cancer is the mostcommon cancer in men in the UKwith around 38,000 new casesdiagnosed per year. The incidenceis rapidly increasing, at least partlydue to the ageing population andthe use of PSA testing.

Prostate cancer is very common inasymptomatic elderly men, whowill often have an excellentprognosis. Hence survival rates arepartly dependent on theproportion of these men who arediagnosed with prostate cancer.National and regional differencesin the investigation of men, usuallywith PSA, and late presentation insome UK regions are likely toaccount for many of the reporteddifferences in survival.

There are uncertainties abouttreatment selection; hormonetherapy is established in thetreatment of metastases whileradiotherapy and surgery havebeen shown to be superior to notreatment in localised disease.These carry significant side effects,hence many men with a goodprognosis will choose activemonitoring, using the PSA test totrigger a change to a more activetreatment. For elderly or unfit menwho are unlikely to benefit fromactive treatment watchful waitingis commonly used, this describes aplan to delay hormone therapyuntil progression occurs.

Roger Kocklebergh, NationalClinical Adviser - Prostate Cancer

“

41Lung cancer

Most of the patients describedabove will have a prolongedsurvival, their follow up will bebased on PSA testing in most casesand remote monitoring willhopefully save the patients timeand inconvenience and releaseclinical time for patients whocannot be monitored remotely.

Follow up after treatment forprostate cancer varies greatlyaccording to the disease,treatment and individual. Themain reasons for traditional followup appointments are:

• PSA testing or giving of results• Post surgery checks• Monitoring of patients onhormone therapy

• Careful monitoring of ‘watchfulwait’ patients

• Metastatic patients and thosewith castrate resistant prostatecancer that need complex careand careful monitoring.

There is variation nationally on thefrequency and duration of followup. In the ‘Rapid Review of Followup practice in England’7 follow upis generally for life with regularannual PSA testing for mostpatients. Unstable patients aregenerally managed by theconsultant and stable patients bythe CNS or the GP under sharedcare or as a Locally EnhancedService (LES).

NICE guidelines19 give thefollowing recommendations:

• Healthcare professionals shoulddiscuss the purpose, duration,frequency and location offollow-up with each man withlocalised prostate cancer, and ifhe wishes, his partner or carers.

• Men with prostate cancer shouldbe clearly advised aboutpotential longer term adverseeffects and when and how toreport them.

• Men with prostate cancer whohave chosen a watchful waitingregimen with no curative intentshould normally be followed upin primary care in accordancewith protocols agreed by thelocal urological cancer MDT andthe relevant primary careorganisation(s). Their PSA shouldbe measured at least once a year.

• PSA levels for all men withprostate cancer who are havingradical treatment should bechecked at the earliest six weeksfollowing treatment, at leastevery six months for the first twoyears and then at least once ayear thereafter.

• Routine digital rectalexamination (DRE) is notrecommended in men withprostate cancer while the PSAremains at baseline levels.

• After at least two years, menwith a stable PSA and who havehad no significant treatmentcomplications, should beoffered follow-up outsidehospital (for example, in primarycare) by telephone or secureelectronic communications,unless they are taking part in aclinical trial that requires moreformal clinic-based follow-up.

• Direct access to the urologicalcancer MDT should be offeredand explained.

There are various late effects thattend to be associated with prostatecancer. Following radicaltreatment these may include:

• Rectal symptoms includingbleeding and urgency

• Urinary symptoms includingincontinence and obstruction

• Erectile dysfunction• Increased risk of other pelviccancer.

Following hormone therapy thesemay include:• Osteoporosis leading to a raisedfracture risk

• Elevated cardiovascular risk.

This programme aims to addresssurvivorship needs and will focuson the assessment and careplanning especially at end oftreatment, information for thepatients and the GP and onimproving access to supportservices enabling people to returnto as normal a life as possiblefollowing their treatment.

42 Prostate cancer

Risk Stratified Prostate Cancer Pathway - For Testing

Diagnosis

Outpatientvisit and

treatmentdecision

Follow upassessment

riskstratification

andTreatmentSummary

Follow up as perprotocol. Riskstratificationfrom three

months or whenPSA stable

Education,supportservices and

optimisation forself management

Radical/surgery/

/adjuvanttreatment orhormones

Activesurveillance

Hormones/other

treatment/management

Supportivecare

Assessmentcare plan

commenced

MDT

Reviewcare plan

Care coordin

Enrol on PSAtracker

Reviewcare plan

KEY FEATURES

Risk stratification decision pointsFor the many patients with low risk factors for disease, treatmenteffects and individual circumstances it may be feasible to refer to aself managed pathway with remote monitoring as appropriate. Adraft criteria for risk stratification table is on page 44. This has beendiscussed by the prostate tumour group and is being tested bysome of the sites.

Review care plan (following treatment)The care plan should be reviewed at the end of treatment/decision notto treat to establish an appropriate care plan that includes supportivecare services to enable the patient to self manage.

43Prostate cancer

ScheduledPSA

scans,biopsies

Results topatient &

GP bypost/email

Continueremote

monitoring

Clinician ledfollow up

Shared care- estimate

25%

Selfmanagement

- estimate40%

Complex care- estimate

35%

Shared care

Selfmanagement

Complex care

Transition toend of life

care

nation

Frequencydetermined

by need

Review pathwaychoice each visit

MDT/Consultantled follow up

Frequencydetermined

by need

Review pathwaychoice each visit

Patientrecalled

forreview

NORMAL

RESULT

ABNORMAL

RESULT

Cha

ngin

gne

eds

may

trig

ger

furt

her

risk

stra

tific

atio

nRe

view

care

plan

aspa

thw

aych

ange

s

A

Support services of particular relevance to prostate cancerpatients• Diet and exercise - healthy eating and physical activity can help

recovery and reduces risk of recurrence. Behavioural changesrequire investment of time, expertise, training andencouragement.

• Peer support/community support - talking to others abouttheir cancer experiences and meeting others living beyond canceras positive role models but also non cancer groups within thecommunity.

Remote monitoringTo incorporate the scheduling and monitoring of PSA tests andbiopsies where required, with results reviewed by the team andpatients recalled to clinic if necessary. Open access back into theservice and contact numbers for cancer related issued in and out ofhours will be provided for patients.

Pathway

Curative

Activemonitoring

Watch

fulw

aiting

Highrisk

(T3

/4,o

rPS

A>20

orGleason>7)

nometastases

Metastasesan

dhorm

onetherap

y

Metastasesan

dno

immed

iate

trea

tmen

t

Castrateresistan

tprostatecancer

Complex

Allpa

tientsforfirst

twoye

ars

Patie

ntswith

symptom

s(uns

tableor

awaitin

gtrea

tmen

t).

PSA

alon

eis

notan

adeq

uate

tool.

Repe

atbiop

sysche

dules

areno

tye

tfully

defin

ed.

Increa

sing

lytrea

tedwith

radiothe

rapy

andho

rmon

es.

Symptom

atic

andthos

ewith

<90

%fallin

PSA.

Nee

dca

refulm

onito

ring.

Trigge

rsba

sedon

symptom

s,marke

rleve

lsan

drate

ofch

ange

.

Man

aged

byM

DT

butmos

tlyman

aged

byon

cologistson

ce2n

dor

3rdlin

etherap

yfaile

d.

Shared

care

Thos

eun

able

toco

mply

with

selfman

agem

ent.

Thos

eun

able

toco

mply

with

selfman

agem

ent.

Long

term

horm

ones

henc

eca

rdiova

scular

riskan

dbo

nehe

alth

mon

itoredin

prim

aryca

re.

Cardiov

ascu

larris

kan

dbo

nehe

alth

mon

itoredin

prim

aryca

re.

Supported

self

man

agem

ent

Potentially

allp

atients

once

symptom

sstab

le.

Follo

wup

with

6mon

thly

PSA.

Allpa

tients.

Patie

ntswith

stab

lesymptom

san

dPS

Aafter2ye

ars.

Patie

ntswith

90%

fallin

PSA

who

areas

ymptom

atic.

Trigger

forre-referral

Any

risein

PSA

aftersu

rgery

Rise

abov

e2+na

dirafterRT

.

Symptom

sor

PSA

rise.

Trigge

rpo

ints

poorly

defin

edbu

t2or

3co

nsec

utiveris

esis

pred

ominan

ttrigge

r.

Symptom

sor

2or

3PS

Aris

esifon

horm

ones

.Rise

abov

e2+na

dirafterRT

.

Symptom

sor

2or

3PS

Aris

es.

44 Prostate cancer

Draft

Criteria

forRisk

Stratification(tobe

tested

)

45Prostate cancer

Current serviceThe prostate cancer service for theTrust is based at the SouthmeadHospital site where surgery takesplace. Chemotherapy andradiotherapy is predominantlydelivered at University HospitalsBristol Foundation TrustWe are currently reconfiguringurology inpatient and emergencyservices across both Bristol Trustsso they will all be delivered atSouthmead Hospital.

North Bristol NHS Trust seesapproximately 550 new prostatecancers per annum withapproximately 800 new prostatecancers per annum across the city.We are the supra-regionalspecialist centre for penile cancerand network centre for complexprostate and bladder cancer. Wehave an established enhancedrecovery programme andsuccessful nurse led follow upclinics for prostate cancer.

Quote from member of team:

“As professionals we have used

this project to test different

models of self management

and living well programmes and

subsequently to test different

models of follow-up

management, including

telephone follow-up and

remote surveillance.”

TestingWe have already developed healthand wellbeing courses working inpartnership with the Penny BrohnCancer Centre and an in house selfmanagement programme incollaboration with clinicalpsychology and will be testing thenew pathway to improve supportfor patients to self manage andgive them confidence with theremote monitoring system.

We are leading the work on thenational electronic solution forremote monitoring and will befurther developing our local ClientRelationship Management Systemto incorporate the findings fromthe distress thermometer and anelectronic care plan and treatmentsummary that will be shared withpatients and GPs.

We are currently looking at optionsavailable for a hand held record forcancer patients.

We will be collecting data onunplanned admissions, prospectivefollow up saved for patients selfmanaging and referrals to supportservices.

North Bristol NHS Trust

Raj PersadProstate Clinical Lead andProstate Surgeonrajpersad@bristolurology.com

Emma ElliottClinical Nurse Specialistemma.elliott@nbt.nhs.uk

Dany BellProject Managerdany.bell@nbt.nhs.uk

Alvan PopeProstate Clinical Lead andConsultant Urologistalvan.pope@thh.nhs.uk

Lorraine BartonLead Nurselorraine.barton@thh.nhs.uk

Juliette WalkerProject ManagerJuliette.Walker@thh.nhs.uk

Current serviceThe prostate cancer service for theTrust is based at HillingdonHospital where the majority ofsurgery takes place. Chemotherapyand radiotherapy take place atneighbouring Mount VernonCancer Centre. The unit seesapproximately 285 new prostatecancers per annum.

Quotes from the team:

“This project gives us the

opportunity to formalise the

criteria for risk stratification and

reduce the number of patients

attending clinic for PSA test

results.”

“A gap analysis of our

supportive services showed that

we have some great services

locally but we need to improve

access to exercise and

vocational rehabilitation for our

prostate cancer patients and we

will be in touch with the NCSI

project leads for these areas.”

“We are using this project to

review how we communicate

with other key professionals

involved in the patient journey

and to give us the opportunity

to truly engage with teams

outside the hospital to ensure

a timely, consistent and

structured team approach.”

TestingWe will be using the distressthermometer, care plan andtreatment summary tested by ourcolleagues in the lung cancer teamlast year in the assessment andcare planning pilot phase. This willbe used throughout the pathwaythrough to end of life care.

We will also be testing the nationalsolution being developed to trackPSA test as part if the remotemonitoring for prostate cancerpatients.

46 Prostate cancer

The Hillingdon Hospitals NHS Foundation Trust

47Prostate cancer

Dr Christopher ScraseProstate Clinical Lead andMacmillan Consultant ClinicalOncologistchristopher.scrase@ipswichhospitals.nhs.uk

Gill HeardSam BowerLead Matrononcology.matron@ipswichhospital.nhs.uk

Louise SmithProject ManagerLouise.m.smith@ipswichhospital.nhs.uk

Current serviceOur prostate service is based atIpswich Hospital NHS Trust, surgeryis done at Cambridge or Norfolkand Norwich Hospitals withchemotherapy, radiotherapy, othertreatments and follow ups here atIpswich. The unit seesapproximately 250 new prostatecancers per annum. We hope toextend our established nurse ledfollow up clinics as part of thetesting.

Quote from a member of the team:

“Having already recognised theneed for support for patients inthe survivorship phase of theircancer journey in all cancers, aswith our other tumour groups,a four week educationprogramme or twice yearlyeducation days are available toempower patients to selfmanage, as appropriate.”

“Working with the NCSI projectleads, local authorities and PCTsas part of the ‘Fit Villages’scheme on exercise andrehabilitation to support selfmanagement for cancerpatients and we plan tofurther develop these areas.”

TestingWe will be using a locally adaptedDistress Thermometer assessmenttool and combined treatmentsummary and care plan in onedocument for patients as part ofthe their hand held record.

We are planning to test anelectronic ‘live’ copy of thisdocument that can be accessed byhealth care professional at anytime in the pathway.

We will be collecting data on thenumber of patients risk stratifiedto self management, outpatientslots saved and unplannedadmissions.

We are hoping to test a PSAtracker IT system locally to build onexisting arrangements with ourGPs.

The Ipswich Hospital NHS Trust

48 Prostate cancer

We believe a large proportion ofpatients will be suitable for selfmanagement and it will beinteresting to see whether thisturns out to be the 40%envisaged within the NCSI draftpathways for testing.

“

”Team Member - Luton and Dunstable Hospital NHS Foundation Trust

Mr Asher AlamProstate Clinical Lead andConsultant Urologistasher.alam@ldh.nhs.uk

Jan ChalkleyLead Cancer Nursejan.chalkley@ldh.nhs.uk

Liz JonesNetwork Lead for Survivorshipliz.jones9@nhs.net

Current serviceThe prostate cancer service isbased at Luton and DunstableHospital (L&D). Chemotherapyservices are delivered locally,however, patients requiring surgeryare referred to the Lister Hospitalin Stevenage and those requiringradiotherapy referred to MountVernon Hospital. All are referredback to L&D once their treatmentis complete.

The unit sees approximately 180new prostate cancer patients perannum. The current follow uppathway includes eight follow upappointments over five years withmany patients having their PSAresults monitored by the hospitalfor life. Until a year ago a largenumber of follow up patients weremanaged via a nurse led clinichowever this ended when theCNS left and patients reverted toconsultant led appointments.

A team member said “This projecthas come at a perfect time for oururology team. “We believe a largeproportion of patients will besuitable for self management and

it will be interesting to see whetherthis turns out to be the 40%envisaged within the NCSI draftpathways for testing.”

TestingOver recent weeks the team havebeen working hard to put in placeall elements of the new pathway.The clinicians have agreed draftcriteria for risk stratifying patientsand since April patients with stabledisease are being transferred to aself managed pathway of care.We are continuing to refine thereferral process and data collectionsystems.

Remote monitoring is critical to thenew pathway for managing PSAfollow up tests. The Trust plans touse the national solution until thesame functionality can move to‘Infoflex’, the local CancerInformation System. Patients thathave completed treatment willhave a phone call from the CNS toenrol them on the remotemonitoring system.

The CNS team commenced end oftreatment assessments and careplanning using the Pepsi Colaassessment tool to guide thediscussions. Motivationalinterviewing skills training for staffis planned. We are working withprostate cancer charities toimprove patient information.

“We are particularly keen to raisethe importance of activity andexercise for this group of patients”said Jan, “not only to benefit theirrecovery from treatment for theirprostate cancer but also to benefittheir general health andwellbeing”. The team have metwith ‘Luton Active’ to developexercise referral pathways and atraining session on cancerawareness has been delivered tothe Luton Active Group. A localservice directory to aid staff inreferring and signposting patientsis expected to be available shortly.

49Useful resources

Luton and Dunstable Hospital NHS Foundation Trust

50 Useful resources

NHS Improvement Adult Survivorship websitewww.improvement.nhs.uk/cancer/adultsurvivorship

NCSI websitewww.ncsi.org.uk

Macmillan websitewww.macmillan.org.uk

NCAT websitewww.ncat.nhs.uk

NCAT Holistic assessment pagewww.ncat.nhs.uk/our-work/living-with-beyond-cancer/holistic-needs-assessment

National Cancer Intelligence Network (NCIN)The NCIN is a UK-wide initiative, working to driveimprovements in standards of cancer care and clinicaloutcomes by improving and using the informationcollected about cancer patients for analysis, publicationand research. The E-Atlas provides data on survival andprevalence.www.ncin.org.uk/cancer_information_tools/eatlas.aspx

The National Lung Cancer AuditThis is now a well-established national programme andannual reports are produced, showing a wide range ofmeasures by trust and network across the UK.The reports are available via the NHS Informationwebsite (www.ic.nhs.uk) and the report for patientsfirst seen in 2009 is due for publication on 23 May2011.

National Institute for Health and ClinicalExcellence (NICE)www.nice.org.uk

CHARITIES AND VOLUNTARY ORGANISATIONSSUPPORTING THE TESTING WORK

Breast Cancer CareThis charity covers the UK and their vision is for everyperson affected by breast cancer to get the besttreatment, information and support. They produce arange of information in many formats and have a“Moving Forward” resource pack specifically forpatients living with and beyond cancer.www.breastcancercare.org.uk

Beating Bowel CancerA leading UK charity for bowel cancer patients,working to raise awareness of symptoms, promoteearly diagnosis and encourage open access totreatment choice for those affected by bowel cancer.They provide a wide range of services including buddyand peer support for patients and deliver numerousawareness and education programmes aimed at thepublic as well as professionals.www.beatingbowelcancer.org

Bowel Cancer UKThis UK charity aims to save lives by raising awarenessof bowel cancer, campaigning for best treatment andcare and providing practical support and advice. Theyproduce a large range of patient leaflets and run theBowel Cancer Advisory Service - a full time nationalfreephone advice and information service for all thoseaffected or concerned about the disease.www.bowelcanceruk.org.uk

Cancer Research UKThis charity, dedicated to beating cancer by research,has a wide range of information on their websiteincluding links to all the latest incidence, mortality andsurvival rates. There are resources available forpatients and professionals.http://info.cancerresearchuk.org/cancerstats/types/prostate

Useful resources

51Useful resources

The Prostate Cancer CharityProvides support and information for patients, families,carers and health professionals on living with prostatecancer.www.prostate-cancer.org.uk

Roy Castle Lung Cancer FoundationProvide practical and emotional support for thoseaffected by lung cancer including support for smokerswho want to quit and guidance for children and youngpeople to make informed decisions about smoking andthe tobacco industry. They campaign vigorously toincrease research funding and awareness about how todetect the early signs of lung cancer and produce arange of information leaflets and resources for patientsand their carers.www.roycastle.org

British Lung FoundationThe British Lung Foundation (BLF) is the only UK charityworking for everyone affected by lung disease. Theyfocus on providing support for people affected by lungdisease and through patient information leaflets andcampaign to bring about positive change in lunghealth and improving treatment, care and support forpeople affected by lung disease. They run a patientsupport group Breath Easy, provide a helpline andarrange meetings around the UK for patients to meet.www.lunguk.org

Breakthrough Breast CancerThis UK charity aims to save lives and change futuresthrough research, campaigning and education toremove the fear of breast cancer for good. They haveinformation and resources at:www.breakthrough.org.uk

Marie Curie Cancer CareMarie Curie aim to support everyone with cancer andother illnesses will have the high quality care andsupport they need at the end of their life in the placeof their choice. Their website has a wide range ofinformation and resources at:www.mariecurie.org.uk

NHS choicesNHS choices provides information and useful links onmany health concerns including cancer.www.nhs.uk/conditions/cancer

PROFESSIONAL ORGANISATIONS

Association of Coloproctology ofGreat Britain and IrelandThe objectives of the Association are to advance thescience and practice of Coloproctology, promote bestpractice through advancement of education andtraining; promote the most efficient and effective useof healthcare resources; to provide and disseminateinformation and to promote study and research intocoloproctology and facilitate the publication of theuseful results.www.acpgbi.org.uk

Association of Breast SurgeryThis is a new association representing healthcareprofessionals treating malignant and benign breastdisease in the UK, Ireland and Worldwide. It focuseson education, audit and guidelines.www.associationofbreastsurgery.org.uk

BASO - The Association for Cancer SurgeryThis association represents surgeons from the UKand Ireland and aim to promote the science and artof cancer surgery, for the benefit of the patient,and to encourage and showcase cancer researchfor public good.www.baso.org.uk

British Associate of Urological Surgeons (BAUS)This association aims are to promote the higheststandard in the practice of Urology for the benefit ofpatients. They have links to education and informationon prostate cancer. www.baus.org.uk

British Associate of Urological Nurses (BAUN)This association aims to promote and maintain thehighest standards in the practice and development ofurological nursing and urological patient care.www.baun.co.uk

52 Useful resources

National Lung Cancer Forum for NursesProvide information to patients, carers and for healthprofessionals whose work involves those with lungcancer.www.nlcfn.org.uk

British Thoracic Oncology GroupA multi-professional organisation dedicated to lungcancer and mesothelioma. It has an annual conference(January) which attracts speakers and delegates fromaround the world, not just the UK. It designs anddevelops clinical trials and runs a number of nationaleducational events.www.BTOG.org

British Thoracic SocietyA registered charity whose objective is to improve thestandards of care of people who have respiratorydiseases. The British Thoracic Society Lung Cancerand Mesothelioma Specialist Advisory Group haveproduced a guidance document, Giving Informationto Lung Cancer Patients, to assist healthcareprofessionals in discussion of options for patientson the lung cancer pathway.www.brit-thoracic.org.uk

53References

The National Cancer Survivorship InitiativeVision, NCSI, 2010www.ncsi.org.uk/wp-content/uploads/NCSI-Vision-Document.pdf

Cancer Reform Strategy. Department of Health,2007.

Improving outcomes: A strategy for cancer.Department of Health, 2011.

Evidence: Helping people to help themselves.The Health Foundation, 2011.

Results of a Quantitative Survey to ExploreBoth Perceptions of the Purposes of Follow-upand Preferences for Methods of Follow-upDelivery Among Service Users, Primary CarePractitioners and Specialist Clinicians afterCancer Treatment. G. Frew et al, ClinicalOncology 22 (2010) 874e884

Making the cancer survivorship agenda areality – think tank event, NCSI, 2008www.improvement.nhs.uk/cancer/survivorship/documents/dh_ncsi/Think_Tank__Event__Final_Report_for_paticipants.pdf

Rapid Review of Follow up Practice in England,NHS Improvement, 2009www.improvement.nhs.uk/cancer/survivorship/documents/nhsi/RRFU_inc_NAO_summaries.pdf

The Improvement Story So Far, NHSImprovement, 2010www.improvement.nhs.uk/cancer/survivorship/documents/nhsi/improvement_story_so_far.pdf

Adult Survivorship Pilot Phase PickerEvaluation, Picker Institute, 2010www.improvement.nhs.uk/cancer/survivorship/documents/picker/Picker_evaluation_2010_Final_Report.pdf

Assessment and Care Planning LessonsLearned, NCSI, 2010www.improvement.nhs.uk/cancer/survivorship/documents/dh_ncsi/ACP_summary_review_011210.pdf

Treatment Record Summary Lessons Learned,NCSI, 2010www.improvement.nhs.uk/cancer/survivorship/documents/dh_ncsi/TRS_summary_review_120111.pdf

Benefits made clear, Macmillan, 2011www.macmillan.org.uk/HowWeCanHelp/FinancialSupport/BenefitsMadeClear.aspx

Guidance on the single assessment process forolder people, Department of Health, 2002

Valuing People: A new strategy for learningdisability for the 21st Century, Department ofHealth, 2001

A National Service Framework for MentalHealth: modern standards and service models,Department of Health,1999

Early and locally advanced Breast Cancer,NICE, full guideline February 2009, revisiondecision date February 2012http://guidance.nice.org.uk/CG80

The Diagnosis and Management of ColorectalCancer, NICE draft guidance, March 2011. Finalreport due October 2011.www.nice.org.uk/nicemedia/live/11840/53846/53846.pdf

The diagnosis and treatment of lung cancer,(update of NICE clinical guideline 24) has recentlybeen reviewed and published.http://guidance.nice.org.uk/CG121

Prostate cancer: diagnosis and treatment, NICE,Guidance was produced in February 2008, Decisionto review will be taken in July 2011.http://guidance.nice.org.uk/CG58

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2.

3.

4.

5.

6.

7.

8.

9.

10.

11.

12.

13.

14.

15.

16.

17.

18.

19.

References

Throughout the testing work and into this nextphase, we continue to be grateful to all of our testsites for their tremendous commitment and hardwork during the course of testing as part of theNational Cancer Survivorship Initiative. Our thanksgo to Professor Jane Maher and Dr Alastair Smithfor their clinical leadership during the pilot phaseover the last couple of years.

The sites expertise and enthusiasm combined withexcellent clinical leadership, service improvementleadership from the National Improvement Leads,support from the cancer networks, patientrepresentatives and our NCSI partners have broughtus to this exciting phase of testing with a wealth ofexperience, knowledge and skills to take thisagenda forward in these challenging times -together.

Thank you all again for your contribution.

NHS Improvement -Adult Survivorship Team

Acknowledgements

54 Acknowledgement

NHS Improvement3rd Floor | St John’s House | East Street | Leicester | LE1 6NB

Telephone: 0116 222 5184 | Fax: 0116 222 5101

www.improvement.nhs.uk

NHS ImprovementNHS Improvement has over 10 years improvement experience. With our practicalknowledge and ‘how to’ approach we help improve the quality and productivityof services through using innovative approaches as well as tried and testedimprovement methodology.

Over the last 12 months we have tested, implemented, sustained and spreadimprovements with over 250 sites to assist in improving services in cancer,diagnostics, heart, lung and stroke. Working closely with the Department ofHealth, trusts, clinical networks, other health organisations and charities wehave helped deliver key strategies and policies to improve the delivery andimplementation of improved services for clinical teams and their patientsacross the NHS.

Delivering tomorrow’simprovement agendafor the NHS

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