national cancer survivor initiative · 1.2 thisdocumentprovidesanupdate...

National Cancer Survivorship InitiativeVision

DH INformatIoN reaDer BoX

Policy EstatesHR/Workforce Commissioning Management IM & T Planning Finance Clinical Social Care/Partnership Working

Document purpose For information

Gateway reference 12879

title The National Cancer Survivorship Initiative Vision

author DH, Macmillan Cancer Support & NHS Improvement

Publication date January 2010

target audience PCT CEs, NHS Trust CEs, SHA CEs, Care Trust CEs, Foundation Trust CEs, Medical Directors, Directors of Nursing, Local Authority CEs, Directors of Adult SSs, PCT Chairs, NHS Trust Board Chairs, Directors of HR, Directors of Finance, Allied Health Professionals, GPs, Communications Leads, Directors of Children’s SSs

Circulation list

Description This document provides an update on the first year of the National Cancer Survivorship Initiative (NCSI) and describes our emerging vision for improved care and support for people living with and beyond cancer.

Cross reference N/A

Superseded documents N/A

action required N/A

timing N/A

Contact details Claire BacheNational Cancer Survivorship Initiative Cancer Services and End of Life Care Team, Department of Health, Room 411, 133–155 Waterloo Road, London SE1 8UG 020 7972 4732 www.ncsi.org.uk

for recipient use

© Crown copyright 2010

First published January 2010

www.dh.gov.uk/publications


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spetstxeN.9 68

Contents

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TheNationalCancerSurvivorshipInitiativeVision

Prefaceby Professor Ann Keen, Parliamentary Under Secretary of State for HealthAsanurse,IamveryawarethatthesignificantinvestmentandimprovementstheGovernmenthasmadetotheNHSoverthepast10yearsmeanthatcancerservicesareimprovingandcancermortalityisfalling.

Thedramaticimprovementsinsurvivalratesmeanthatweneedtochallengewidespreadbeliefsaboutcancer.Cancerisincreasinglyanillnesswhichmightbecuredorwhichmighthavethecharacteristicsofalongtermorchronicconditionthatpeoplecanlivewithformanyyears.

Itisthereforeveryimportantthattheincreasingnumbersofpeoplelivingwithandbeyondcancer,theircarersandtheirfamilieshavethesupportandservicestheyneedtoresumeasnormalalifeastheycanfollowingcancertreatment.

ThroughtheNationalCancerSurvivorshipInitiativewearecommittedtotakingstepstoensurethatallcancersurvivorsgetthecareandsupporttheyneedtoleadashealthyandactivealifeaspossible,foraslongaspossible.

Ourvisionisthatpeoplelivingwithandbeyondcancerhaveapersonalised

assessment,informationandcareplanandareempoweredtomanagetheircondition,basedontheirneedsandpreferences.Ourvisionisforpeopletobeinformedandpreparedforthelong-termeffectsoflivingwithandbeyondcancer,andthathealthandcareservicesareresponsivetoindividualneedsandensureaccesstospecialistcarewhenneeded.

Followingcancertreatmentsomepeoplewillbeleftwithphysicalorpsychologicalproblemswhichaffecttheirhealthandwell-being.Therearesomeverypracticalactionswecantaketomakeadifferencetopeoplefollowingcancertreatment.Hairlossfollowingcancertreatmentcancausehugedistressandanxiety–justatatimewhenpeoplearerecoveringfromtheirtreatmentandwantingtogetbacktoasnormalalifeaspossible.ThatiswhytheDepartmentofHealthisworkingwithTrevorSorbie’scharityMyNewHairtosupportcancerpatientsdealingwithhairlossfollowingcancertreatment.Thisisjustoneofthemanythingswecandotomakeahugedifferencetoindividualpatients.

Iamdelightedthattherearenow38testcommunitiesaroundthecountrypilotingimprovementsforcancersurvivors.We

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Preface

mustlearnfromthesenewservicemodelsanddemonstratethattheyofferbettercareforpatientsandbestuseofNHSresources.Icongratulateallwhohaveworkedtomakesuchadifferencetothisvitalwork.

Ann Keen, Parliamentary Under Secretary of State for Health

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Forewordby Ciarán Devane and Mike Richards

Todayover1.6millionpeoplelivinginEnglandhavehadadiagnosisofcancer.Anageingpopulation,theresultingincreaseincancerincidenceandimprovedsurvivalmeanscancerprevalencewillcontinuetogrowatover3%ayear.By2030therearelikelytobeover3millionpeopleinEnglandlivingwithorbeyondtheircancer.Ourfirstchallengeistounderstandtheneedsofthoselivingwithcancertodayandtodevelopmodelsofcarewhichmeettheirneeds.WeneedtodesignserviceswhichwillaccommodatetheincreasingnumbersofcancersurvivorsinthefutureandwemustdothisinawaywhichensuresthesustainabilityofNHSservicesandincreasestheproductivityofNHSresources.Webelievethisdocumentidentifiesavisionwhichwillachievetheseaims.

Foraproportionofthe1.6millionpeoplelivingwithandbeyondcancer,weareneitheridentifyingtheirneeds,normeetingthem.Wenowhavearangeofevidencewhichsuggeststhatcurrentfollowuparrangementsdonotaddressthefullrangeofphysical,psychological,social,spiritual,financialandinformationneedsthatcancersurvivorsmayhavefollowingtheirtreatment.

Ourvisionisthatcancersurvivorsaresupportedtoliveashealthyandactive

alifeaspossibleforaslongaspossible.Forsome,cancercanbean‘acuteillness’whichcanbecuredbyinitialtreatment.Being‘cured’howeverdoesnotmeanoneisnecessarilywell.Chronicconsequencesoftreatmentmayneedtobemanagedoverthefollowingmonthsandyears,consequenceswhichoftenhaveadevastatingimpactondailylife.Forthosewithadvanceddisease,wewanttosupportthemtohaveasactiveandindependentalifeaspossible.Inshort,wewanttohelpthesepeoplelivewiththeircancer.

Achievingthevisionwillrequireapersonalisedassessmentandcareplanforeveryoneandinformationandsupporttoenablepeopletogetbackasnormalalifeaspossibleaftercancertreatment.Wewillneedtoempowerpeopletomanagetheirconditionbasedontheirneedsandpreferences.Itwillrequireserviceswhichareresponsivetoindividualneedsandwhichensureaccesstospecialistcarewhenneeded.Itwillrequirecoordinationacrossprimaryandsecondarycareandacrosshealthandsocialcare.Achievingthevisionwillalsorequiretheroutineuseofpatientreportedoutcomemeasurestomonitorproblemsforcancersurvivorsasdefinedbythem.

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Foreword

In2010,theNationalCancerSurvivorshipInitiative(NCSI)willmovefromadevelopmentphasetobuildingtheevidencethroughbothresearchandpiloting.Thefocusoftheinitiativein2010willbetoengageserviceusers,cliniciansandcommissionersindefiningthenewmodelsofaftercareforpeopleaffectedbycancerandtoestablishthelongertermsurvivorshipresearchprogramme.

ThesenewmodelswillimprovequalityforcancersurvivorsandtheywillrepresentbestuseofNHSresources.Earlyevidence,whichwewillexplorefurtherin2010indicatesthatwherecareiscoordinatedandsurvivorsaresupportedtoself-manage,unplannedandemergencyadmissionscanbereduced.Further,wherepeoplearewellsupportedthenumberwhocanreturntoworkisincreased,withallthatmeansfortheirself-esteem,financesandcontributiontosociety.

Theunmetneedsofcancersurvivors,therisingnumbers,andthedutytouseourresourcesefficientlyallmeanthatthrough2010wemustdevelopthosecriticalinterventionswhichwillimprovequalityforpatients.InDecember2009,theDepartmentofHealthpublishedafiveyearplanfortheNHStomeetthechallengeofdeliveringhighqualityhealthcareinatoughfinancialenvrionment.1Thereportdescribestheneedtodevelophighimpactchangesinimprovedselfcare,careplanningandmakingthebestuseoftechnology.Thesethemesarepickedup

intheshiftsidentifiedinthedocument.BypublishingourvisionforcareandsupportforcancersurvivorsnowwewanttosharethedirectionoftheNCSIwithserviceusers,carers,cliniciansandservicecommissioners.WewanttoprepareserviceprovidersandcommissionersfortestedmodelsandprinciplesforimprovedcareandsupportthattheNCSIwilldevelopbytheendof2010.Wewanttoshowthataswellasimprovedquality,survivorshiprepresentsasignificantpartofhowthecancercommunitywillrespondtothequalityandproductivitychallengeweallface.

Thisdocumentistheworkofmany.Wearegratefultotheserviceusers,carers,clinicians,commissioners,researchers,charitiesandmanyotherswhoareworkingwithusontheNationalCancerSurvivorshipInitiative.Welookforwardtocontinuingtoworktogetherduringthenextstageoftheinitiative.

CIARÁN DEVANEChief Executive Macmillan Cancer Support

MIKE RICHARDSNational Cancer Director

1 NHS2010–2015:fromgoodtogreat.Preventative,people-centred,productive.DepartmentofHealthDecember2009.

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1.ExecutiveSummary

1.1 Thegrowinggroupofcancersurvivors,theircarersandfamilieswillneedsupportandservices,whichhelpthemtomeettheirneedsoverlongerperiods.

1.2 ThisdocumentprovidesanupdateonthefirstyearoftheNationalCancerSurvivorshipInitiative(NCSI)anddescribesouremergingvisionforimprovedcareandsupportforpeoplelivingwithandbeyondcancer.MoreinformationabouttheNCSIissetoutintheAnnextothisdocument.

1.3 TheNCSIhasgatheredarangeofevidenceaboutthecurrentpictureofcareandsupportforcancersurvivorswhichsuggeststhatcurrentfollowuparrangementsarenotallmeetingtheneedsofsurvivors.ThisevidenceincludesthePickersurvey2ofover2,000cancersurvivorsbetweenJuneandSeptember2009,whichfoundthat43%ofrespondentswouldhavelikedmoreinformationandadvice,75%didnothave,ordidnotknowiftheyhad,acareplanand75%reportednotknowingwhotocontactforadviceoutsideofofficehours.

1.4 ThevisionoftheNCSIisthatby2012,thoselivingwithandbeyondcanceraresupportedtoliveashealthyandactivealifeaspossibleforaslongaspossible.

1.5 TheNCSIhasidentifiedtheneedforfiveshiftsintheapproachtothecareandsupportforpeoplelivingwithandbeyondcancer.Theseshiftsare:

> aculturalshiftintheapproachtocareandsupportforpeopleaffectedbycancer–toagreaterfocusonrecovery,healthandwell-beingaftercancertreatment

> ashifttowardsassessment,informationprovisionandpersonalisedcareplanning.Thisisashiftfromaone-sizefitsallapproachtofollowuptopersonalisedcareplanningbasedonassessmentofindividualrisks,needsandpreferences

> ashifttowardssupportforself-management.Thisisashiftfromaclinicallyledapproachtofollowupcaretosupportedself-management,basedonindividualneedsandpreferencesandwiththeappropriateclinicalassessment,supportandtreatment

> ashiftfromasinglemodelofclinicalfollowuptotailoredsupportthatenablesearlyrecognitionofandpreparationfortheconsequencesoftreatmentaswellasearlyrecognitionofsignsandsymptomsoffurtherdisease

> ashiftfromanemphasisonmeasuringclinicalactivitytoanewemphasisonmeasuringexperienceandoutcomesforcancersurvivorsthroughroutineuseofPatientReportedOutcomeMeasuresinaftercareservices.

2 TheSummaryReportofthePickerSurveyisavailableatwww.ncsi.org.uk

www.ncsi.org.uk

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1.6 Changestoworkingpracticeswillbeneededtomakethisnewmodelofsurvivorshipcareworkeffectively.Servicesneedtobetailoredtomeettheneedsoftheindividual,ratherthantheonesizefitsallmodelwhichhasbeenthetraditionalpatternoffollowupcancercare.Manyofthechangesthatwillberequiredarealreadyinuseinsomeareasandothersarecurrentlybeingpiloted.Itwillbeessentialtoevaluatenewservicemodelsastheyaredevelopedandtolearnfromexperienceinothercountries.

1.7 TheNCSIconsidersthatimprovingcareandsupportforcancersurvivorscouldimprovethequalityoflifeandexperienceofcareofcancersurvivorsaswellassecuringthesustainabilityandefficiency

ofhealthcareservices.Thenewapproachtoaftercaremaximiseshealthandwell-beingthroughsupportingthepreventionofillhealthandearlydetectionoffurtherdisease.Asurvivorshipassessmentandcareplancanenabletheearlyidentificationofpossibleconsequencesoftreatmentandhelppatientsandhealthcareprofessionalsproactivelymanagetheseconsequencestominimisetheirimpact–preventingthembecomingproblemsforthelongterm.

1.8 In2010,theNCSIwillmovefromadevelopmentphasetoanevidencegatheringandpilotingphase.Themainfocusoftheinitiativein2010willbetoengageserviceusers,cliniciansandcommissionersindevelopingnewmodelsofaftercareandgatheringevidenceof

•EmergingvisionandcarefromNCSIworkstreams

•Pilotingmodelsofcareandsupport

•Gatheringevidenceofbenefitsofnewmodelsofcare

•Preparingprinciplesforimprovedsupportforhealthandcarecommissioners

•Implementationoftestedmodelsofcare

•Establishmentoflongtermsurvivorshipresearchprogramme

•Ongoingimprovementtocareandsupportforcancersurvivors

Development

2009 2010 2011 2012

Testing

Implementation

Timeline for phases of the National Cancer Survivorship Initiative

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1.ExecutiveSummary

thebenefitsoftestedmodelsofcareandsupportforcancersurvivors.TheNCSIwillalsobeestablishingalongertermresearchprogramme.

1.9 ThenextkeymilestonefortheNCSIisthedevelopmentofprinciplesforservicecommissionersbytheendof2010,basedonthesetestedmodelsofcare.

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2.Background:Wherearewenow?

Numbers of Cancer Survivors2.1 Todayover1.6millionpeoplearelivinginEnglandhavinghadadiagnosisofcancer–2millionacrosstheUnitedKingdom.Nearlytwothirdsofthesesurvivorsareover65yearsoldandaround3outof5arewomen.Threecancertypes(breast,prostateandcolorectalcancer)accountforoverhalfofallsurvivors.Weknowthatofthe2millionsurvivorsintheUK1.24millionpeoplehadaninitialcancerdiagnosismorethan5yearsago.

Thenumberofcancersurvivorsislikelytogrowbyover3%peryear,reflectingtheincreasingincidenceofcancerandbettersurvivalrates.

2.2 Thesignificantimprovementsincancerservicesoverthepast10yearsmeancancersurvivalisimproving.Survivalforbreast,colorectalandprostatecancerhaveimprovedconsiderably.Today,five-yearsurvivalestimatesforbreastcancerare86%;forcoloncancerthefiguresare53.4%and52.7%formenandwomen;forrectalcancerthefiguresare54.3%and

Numbers of people living in the UK and England who have had a cancer diagnosis3

UK % England %

Total 2,002,516 100 1,663,841

Male 819,188 40.9 682,443 41

Female 1,183,328 59.1 981,398 59

Age 71-0 15,073 0.8 12,524 0.8*

46-81 729,181 36.4 605,858 36.4*

+56 1,258,262 62.8 1,045,459 62.8*

Breast 548,998 27.4 460,041 27.6

Colorectal 235,816 11.8 193,047 11.6

Prostate 253,436 12.7 215,654 13.0

Lung 63,522 3.2 51,668 3.1

Other 900,744 45 743,431 44.7

KUehtsaemasehtebotdemussA*

3 CancerprevalenceintheUnitedKingdom:estimatesfor2008JMaddams,DBrewster,AGavin,JSteward,JElliott,MUtley&HMøllerBrJCancer2009101:541-547

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56%formenandwomen,andforprostatecancerthefigureis86.2%4.

2.3 Onlyonehalfofonepercentofcanceroccursinunder16yearoldsand1%ofcancerin15-29yearolds.However,78%ofchildrensurvivemorethanfiveyearsaftercancer.5Duetothesehighoverallsurvivalratestherearegrowingnumbersofchildren,youngpeopleandadultswhohavebeentreatedforchildhoodcancer.

Health and well-being of cancer survivors2.4 Theimpactofcancerdoesnotendaftertreatment.The‘Healthand

WellBeingSurvey’byMacmillanCancerSupportin20086foundthatcancersurvivorsreportedpoorerhealthandwell-beingthanthegeneralpopulation.Thehealthandwell-beingprofileofthecancersurvivorpopulation(withoutactivecancer)iscomparabletothepopulationofpeoplewithachronicconditionsuchasdiabetesorarthritis.Muchofthiscanbeattributedtoconditionsrelatedtotheconsequencesofcancertreatment.TheMacmillansurveyshowed90%ofcancersurvivorshadvisitedtheirGPinthelast12months,comparedto68%ofthewiderpopulation.

Macmillan Health and Well-being survey 20087

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4 CancerReformStrategy2ndAnnualReport,November2009,DepartmentofHealth

5 ChildhoodCancerinBritainIncidence,Survival,MortalityEdCStillerOxfordUniversityPressISBN9780198520702

6 Thesampleforthissurveyincludedanevenrangeofsurvivorsdiagnosedfromoneyeartomorethan10yearspriortothesurvey

7 MacmillanCancerSupport,HealthandWellBeingsurvey,2008

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2.5 Cancersurvivorshavearangeofphysical,psychologicalandsocialneeds.InMay2009,theNationalCancerSurvivorshipInitiative(NCSI)researchworkstreamundertookamappingexercisetoidentifythekeyaspectsofthehealthandwell-being,careandsupportneedsandexperiencesofpeoplelivingwithandbeyondcancer.Theintentionoftheexercisewastomapthe‘survivorshipjourney’ofpeopleaffectedbycancer,boththemorecommonandlesscommoncancers,tounderstandwhathappenstosurvivorsofcancerandtheissuesandchallengestheyface.

2.6 Whiletheimpactofissueswilldifferforindividuals,themappingexercisesuggeststhatsomeofthekeyissuesforsurvivorsinclude:

> psychosocialissuesincludinganxiety,depression,isolationandnegativeimpactsonself-identityorself-image

> physicalissuesincludingfatigue,breathlessnessandbowelproblems,gynaecomastia(breastswellinginmen),breasttissueremovalandphysicalchangesrelatingtothetreatmentofheadandneckcancerwhichmayalsohavesignificantpsychologicalimplications

> effectsonsexuality,includinglossoflibido,impotenceandinfertility

> difficultiesintheworkplaceasaresultoflackofawarenessamongstemployersandcolleagues

> alackofverbalandwritteninformationonareassuchasdiet,exerciseandotherpotentialbeneficiallifestylechanges,financialassistanceandcontactinformationforsupport.8

2.7 Thereisarangeofevidenceavailableabouttheissuesfacedbycancersurvivors.ThisevidenceincludesTheProstateCancerCharity’sReport‘HamperedbyHormones’.TheProstateCancerCharity’sReportdescribestheissuesfacedbymenundergoinghormonetherapy.9Itfoundthat:

> fatigueimpactedonthelivesof70%ofrespondentstotheirsurveyof332men(affectingtheirabilitytowork,conducthouseholdchoresandpursuehobbies)

> 80%experiencederectiledysfunctionasaresultoftheirtreatment–withaquarterreportingthattheyfoundthisdifficulttocopewith

> 1in2reportedseriousissuesrelatedtotheirmentalwell-beingincludingfeelingsofdepression,lossofconfidenceandcognitiveproblems.

2.8 Furtherevidenceabouttheneedsofcancersurvivorsisprovidedbyanalysis

8 Reportsofthemappingexercisesforthefourcommoncancersandthelesscommoncancers(byCancer52)areavailableatwww.ncsi.org.uk

9 Hamperedbyhormones?AddressingtheneedsofmenwithprostatecancerCampaignReport.TheProstateCancerCharity,June2009

http://www.ncsi.org.uk

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oftheMacmillanCancerSupport‘HealthandWellBeingSurvey’.Thisshowsthat84%ofbreastcancersurvivorswhorespondedtothesurveysaidthattheyhadexperiencedatleastonephysicalhealthproblemwithinthelast12months.10Fatigue,nervedamage,hotflushes,earlymenopauseandlymphoedemaarejustsomeofthephysicallong-termproblemsthatcanaffectbreastcancersurvivors.

2.9 Arecentstudyof1,152 peoplewithbreast,colorectal,haematologicalandgynaecologicalcancerstreatedat66UKcancercentres11suggestedthat30%reportedmorethanfivemoderateorsevereunmetneedsattheendoftreatmentandfor60%oftheseindividuals,thesehadnotimprovedsixmonthsafterprimarycancertreatment.Themostcommonunmetneedswerepsychologicalneedsandfearofrecurrence.

2.10 Manysurvivorsneedsupporttodealwiththeconsequencesoftreatment.Studiesofpatientsafterpelvicradiotherapyconsistentlysuggestthat50%ofallpatientsareleftwithbowelproblemsaffectingqualityoflifeand30%statethatthesebowelproblemshaveamoderateorsevereimpact.Studiessuggestthat

fewerthan1in5ofthesepatientsiseverassessedbyaspecialist.12

2.11 CLICSargenthavereviewedcommunitybasedclinicalcareandsupportneededbychildrenwithcancerandtheirfamilies13.Thereviewidentifiedtheneedfor‘packagesofcare’forchildrenandyoungpeopletoaddressclinicalcareneedsaswellasemotional,educational,social,practicalandfinancialneeds.Thereviewidentifiedthespecialeducationandemotionalneedsofthesiblingsandfamilies,friendsandteachersofchildrenandyoungpeoplelivingwithcancer.

The social and economic impact of cancer2.12 Morethannineoutoften(91%)ofcancerpatients’householdssufferalossofincomeand/orincreasedcostsasadirectresultofcancer.1490,000peopleofworkingagearediagnosedwithcancereachyearintheUK.15Itisestimatedthatthereareover700,000peopleofworkingagewhohavehadacancerdiagnosisintheUK.16Manypeoplewhohavehadcancertreatmentwanttogobacktoworkwhentheyfeelfitandready.However,theevidencesuggeststhatsomepeopleareunabletoreturntoworkafteracancer

10 MacmillanCancerSupport,HealthandWellBeingSurvey,2008

11 ArmesPJ,RichardsonA,CroweM,ColbourneL,MorganH,OakleyC,PalmerN,ReamE&YoungA.Patients’supportivecareneedsbeyondtheendoftreatment:aprospectiveandlongitudinalsurvey.JClinOncol27:6172-61792009

12 Widmark1994,Kollmorgen1994,Crook1996,alAbany2002,Henningsohn2002,Bergmark2002,Gami2003,Fokdal2004,Jephcott2004,Olopade2005,Andreyev2007,Abayomi2009,Barker2009.

13 Morethanmyillness–Deliveringqualitycareforchildrenwithcancer.ClicSargent2009

14 MacmillanCancerSupport,CancerCosts:Thehiddenpriceofgettingtreatment2006

15 OfficeforNationalStatistics,2003

16 KingsCollegeLondon,MacmillanCancerSupport,andNationalCancerIntelligenceNetwork,CancerprevalenceintheUK,2008

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diagnosis.Recentinternationalevidencesuggeststhat33%ofcancersurvivorswereunemployedandthatcancersurvivorswere1.4timesmorelikelytobeunemployedthanpeoplewhohavenothadcancer.17AUKstudyreportedthat83%ofcancersurvivorsreturnedtowork,butoverhalfofthosereturninghadbeenoffworkforsixmonthsormore.18

2.13 Wherepeopledoreturntowork,mostdosowithoutmedicalorrehabilitationadvice.Inarecentstudyofcancersurvivors’viewsaboutwork,fewsaidthattheyreceivedanyadvicefromtheirspecialistcancercareteamorfromtheirownGPsaboutreturningtowork.19A2005Cancerbackupsurveyofpeopleaffectedbycancerfoundthatlessthanhalfwereadvisedbycancerdoctorsabouttheimpactoftreatmentontheirwork.Supportfromemployersisvariable;50%werenotinformedbyemployersofstatutoryrightsandlessthanhalfwereofferedflexibleworkingarrangements.20

2.14 Asurveyofnearly800occupationalhealthphysicians(OHPs)in200921suggestedthattheremaybearoleforOHPstoassistcancersurvivorsintheir

returntoworkprocess.However,thisstudyidentifiedsignificantissueswithrespectto;timelyaccesstooccupationalhealthservices,communicationbetweenhealthprofessionalsandemployers,theknowledgebaseofOHPsinthisareaandtheunderstandingofthepotentialassistanceOHPscanprovide.Asurveyofcancersurvivorsin2008foundthatjustoverathirdofthesamplereturnedtoworkafteradvicefromanoccupationalhealthpractitionerbutthiswasrestrictedtothosewhoworkedinalargeorganisation.22

2.15 In2005theDisabilityDiscriminationActwasextendedtoapplytocancerpatientsfromthepointofdiagnosis.TheActgivespeoplelivingwithcancerprotectionfromdiscriminationinarangeofareasincludingemploymentandeducation.ResearchbyCancerbackup,WorkingwithCancer,theCharteredInstituteofPersonnelandDevelopment(2006)andtheDepartmentforWorkandPensions(2007)suggeststhatonlyoneinfiveemployersisawarethatcanceriscoveredbytheAct.2324

2.16 ProvisionalanalysisfortheDepartmentofHealthsuggestthatthe

17 http://jama.ama-assn.org/cgi/content/abstract/301/7/753

18 AmirZ,MoranT,WalshL,IddendenR,LukerK.Returntopaidworkaftercancer:aBritishexperience.JCancerSurviv2007;1:129–136.

19 AmirZ,NearyD,LukerK.Cancersurvivors’viewsofwork3yearspostdiagnosis:aUKperspective.EurJOncolNurs2008;12:190–197

20 Cancerbackup,Work and Cancer: How cancer affects working lives,2005

21 AmirZ,WynnP,WhitakerS,LukerK(2009)Cancersurvivorshipandreturntowork:UKoccupationalphysicianexperience.OccupationalMedicine59:390-396.

22 AmirZ,NearyD,LukerK.Cancersurvivors’viewsofwork3yearspostdiagnosis:aUKperspective.EurJOncolNurs2008;12:190–197

23 Cancerbackup,CIPD,Working with Cancer: Survey Report 2006, 2006

24 SimmC,AstonJ,WilliamsC,HillD,BellisA,MeagerN, Organisations’ Responses to the Disability Discrimination Act,DWPResearchReport410(2007)

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annualcoststotheeconomyinEnglandofcancersurvivorsnotreturningtoworkcouldbeashighas£1.5billion.Thisfigureisanestimateastheeconomiccostsaredependentonwhetherjobsarefilledbyotherswhencancersurvivorsareunemployedandtheassumptionsinthecalculationincludethatcancersurvivorswhoareofworkingage,beforecancerdiagnosisandtreatment,hadthesamefulltimeworkparticipationasthegeneralworkingagepopulation.

Experience of care of cancer survivors2.17 TheNCSIisworkingwiththePickerInstituteonasurveytogetanationalpictureoftheexperienceofcareofadultcancersurvivors.ThefirstsurveyranbetweenJuneandSeptember2009andinvolvedover2,000peopleidentifiedbytheNCSIadulttestcommunities.AfurthersurveyintheSummerof2010willenabletheNCSItotrackprogressandmeasuretheimpactofthepilotingworkontheexperienceofsurvivors.

2.18 Thefindingsofthebaselinesurveyshowthatgenerallythosesurveyedfeltpositivelyaboutthecaretheyhadreceivedfromhealthprofessionalsduringtheircancercare.86%felttheyhadbeengivenconsistentadviceallormostofthetimeand96%felttheyhadbeentreatedwith

dignityandrespectbyhealthprofessionalsallormostofthetime.

2.19 However,thesurveyshowsthatthecurrentsystemoffollowupisnotmeetingallofsurvivors’needs.Somekeyfindingsare:

> 65%ofrespondentssaidtheyknewwhotocontactduringofficehours,however,75%didnotknowwhotocontactoutofofficehoursiftheyhadaconcern

> 75%reportedthattheydidnothave,ordidnotknowiftheyhave,acareplan

> Accesstoinformationandadvicewasaparticularlyprominentissue;despite80%reportingbeinggivenwritteninformationabouttheircancer,43%ofrespondentssaidtheywouldhavelikedmoreinformationandadvice.Ofthose:27%wantedmoreinformationandadviceaboutthephysicalaspectsoflivingwithandaftercancerandthesideeffectsorsignsofrecurrence;14%wantedinformationandadviceaboutthepsychologicaloremotionalaspectsoflivingwithcancer;and,15%wantedinformationaboutdietandexercise

> 31%neededhelpwithoneormorephysicalconcerns.Ofthose,13%wantedmorehelpwithfeelingtired,11%wantedhelpwithproblemswith

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sleeping,9%wantedhelpwithbladderorurinaryproblemsand7%wantedhelpwithbowelordigestiveproblems.25

2.20 TheNCSIchildrenandyoungpeopleworkstreamareplanningtoundertakeanexperienceofcaresurveylaterin2010.

2.21 Toaddtoourunderstandingoftheimpactonhealthandcareprovidersofprovidingservicesforcancersurvivors,theDepartmentofHealthandtheNationalCancerIntelligenceNetwork(NCIN)willworkwiththeNuffieldTrusttounderstandtheutilisationofsocialcareservicesbycancerpatients.

Current services for cancer survivors2.22 Traditionallythefocusofcancerserviceshasbeenoncancerasanacuteillnesswithanemphasisontheacutetreatmentphase.Carefollowingtreatmenthasbeenfocusedonmonitoring,orsurveillanceof,individualsforsignsoffurtherdiseaseorrecurrence.Theseserviceshavebeencalled‘followup’.

2.23 Followuparrangementsforpeoplewhohavecompletedtreatmentusuallyinvolveregularout-patientappointmentsinanacutehospitalandincludeareviewofapatient’smedicalhistoryandaphysicalexamination.Themainfocusoffollowupcarehasbeentocheckforsignsof

recurrence(thereturnofcancerintheprimarysite)ormetastasis(thespreadofcancertoanotherpartofthebody).

2.24 Thereissomedebateabouttheefficacyofcurrentfollowupstrategies.Manyrecurrencesarepickedupthroughsymptomsdetectedbypatientsthemselvesbetweenscheduledclinicvisits.Forbreastcancerthisisthecaseforthelargemajorityofrecurrences.26

2.25 Trajectoriesofcancer,thatishowcancerunfoldsovertimeforindividuals,oftendifferfromthetraditionalpatternoffollowupcareaftertreatment.Traditionalfollowuphasbeendesignedto‘screen’individualsforsignsofcanceratregularintervalsaftercompletionfortreatment.However,ithasnotbeendesignedtomanagetheconsequencesofcancertreatmentwheresymptomscanpersistformanymonthsoryears,orprovideadequatesupportorhelptoindividualsexperiencingrecurrentcancerwhomayhavetohaverepeatedtreatment,sometimesovermanyyears.

2.26 InSeptember2009,NHSImprovementcarriedoutareviewofadultcancerfollowupservices.ThereviewinvolvedalltheCancerNetworksinEnglandandlookedatwhatcurrentlyhappensforpatientsfollowingtreatmentforthreecancertypes–breast,colorectalandprostatecancer.Thereviewfound

25 ThesummaryreportofthePickersurveyisavailableatwww.ncsi.org.uk

26 MontgomeryD.A.KrupaK.CookeT.G.(2007)Alternativemethodsoffollowupinbreastcancer:asystematicreviewoftheliterature,BritishJournalofCancer;96;1625-1632

http://www.ncsi.org.uk

18


thatsurvivorshipcareusuallymeanshealthprofessionalled,clinicallyfocusedlong-termfollowupofcancerpatients.Widevariationinfollowuppractice,includingintheuseofassessmenttoolsandcareplanswasfound.27

2.27 Cancertreatmentandfollowupforchildrenandyoungpeopleiscentralisedinto18centresinEngland.Lifelongsurveillanceandsupportforchildrenandyoungpeopleforthephysical,psychologicalandsocialconsequencesofcancerisacomponentoftheChildrenandYoungPeopleImprovingOutcomesGuidance.28However,astudyin2004suggestedthatmorethan40%oflongtermsurvivorsofchildhoodcancerintheUKhadnocontactwithcancerservices.29

2.28 AscancersurvivorsarelivinglongertheyarespendingmoretimeinthecommunityandrequiringmoresupportfromtheirGP.Primarycarehasanimportantroletoplayinmeetingtheneedsofpeoplelivingwithandbeyondcancer.Thismightincludeprovidingongoingtreatment.Forexample,menonongoinghormonetherapyforprostatecanceroftenreceivetheirtreatmentattheirlocalGPpractice.TheQualityandOutcomesFrameworkforprimarycareincludesincentivesforGPstoinvitepatientsforareviewappointmentwithinsixmonths

ofadiagnosisofcancer.ThiscancercarereviewenablesGPstounderstandtheneedsofcancersurvivorsandcarersandprovideinformationandsupport.InthefutureGPswillplayapivotalroleincancersurvivorshipandwillneedtobeabletoidentifysignsofrecurrenceortheconsequencesoftreatmentandreferandsupportpatientsandcarersappropriately.However,itisalsoimportanttorecognisethatGPsareunlikelytohaveexperienceinassessmentormanagingthesideeffectsofawidevarietyoftreatments.

2.29 Informationaboutconsequencesofcancertreatmentandsignsandsymptomsofrecurrenceisoftennotadequatelycommunicatedtoprimarycare.TheNCSIassessmentandcareplanningworkstreamhaveidentifiedthatthereisawidevariationinthequalityandcontentofinformationaboutcancertreatmentthatiscurrentlycommunicatedtoprimarycare.

2.30 ArangeofcareandsupportisprovidedbyLocalAuthoritiesforcancersurvivors.ResearchforMacmillanCancerSupport30hasdescribedthesocialcareneedsofpeoplewithcancerandtheircarers,whichcaninclude:helpwithdailychoresduringtreatment,formaldomiciliarycare,formalrespitecare,homeadaptationsandbenefitsassessment.Thevoluntarysectoralsoprovideservicestosupport

27 www.improvement.nhs.uk/cancer/

28 EvidenceonCancerServices:ImprovingOutcomesinChildrenandYoungPeoplewithCancerNICE,2005ISBN1846290678

29 TaylorA,HawkinsM,GriffithsA,DaviesH,DouglasC,HenneyM,WallaceWH,LevittGLong-termfollowupofsurvivorsofchildhoodcancerintheUK.PediatricBloodCancer.2004Feb:42(2)’161-8.

30 ‘SocialCareforCancer–Dosocialcareservicesmeettheneedsofpeopleaffectedbycancer?’byMacmillanCancerSupport(April2009)

www.improvement.nhs.uk/cancer/

19


peopleaffectedbycancer,eitherintheirroleasserviceprovidersforLocalAuthoritiesorPrimaryCareTrustsordirectlythroughtheircharitableobjectives.

21

3.Visionandfivekeyshifts

The Scope of Survivorship A Patient Perspective3.1 Therearedifferentdefinitionsof 3.4 Notwopeoplewithcancerwillhavecancersurvivorship.Anyonewhoisliving exactlythesameprioritiesandneeds.followingadiagnosisofcancercanbe However,followingadiagnosisofcancerdescribedasa‘survivor’,thoughmany mostpeoplearelikelytowantto:peopleprefertothinkaboutthisin

> havethemaximumchanceofbeingtermsof‘livingwithandbeyondcancer’.curedSurvivorshipthereforeencompassesthose

whoareundergoingprimarytreatment, > returntoasnormalalifeaspossiblethosewhoareinremissionfollowing (thoughtheirprioritiesmaychangeandtreatment,thosewhoarecuredandthose theymaydevelopa‘newnormal’)withactiveoradvanceddisease.

> beempoweredtotakeasmuchcontrol3.2 Whilemanyaspectsoflonger-term oftheirowncareastheywishcareandsupportneedtobeinplacefromthepointofcancerdiagnosis,thefocusof > begiventheinformationtheyrequiretotheNationalCancerSurvivorshipInitiative helpthemmakeinformeddecisions(NCSI)isontheassessment,careandsupportgiventopeoplefromtheendof > knowwhattoexpectandwhattolook

primarytreatmentonwards.Whilethis outfor

documentreferstotheneedsofcancer> knowwhotocontactshouldtheneed

survivors,thisshouldbereadasincludingarise

theneedsoftheircarersandfamilies.

> knowthattheimportanceofsideeffects3.3 TheNCSIaddressesthefullrange

suchashairlosswillberecognisedandofissues–includinghealthcare,specialist

helpgivenwiththemservices,socialcare,self-care,familycare,psychologicalandemotional,financial, > knowthatanyfurtherdiseaseoremployment,educationandspiritual consequenceofcancertreatmentwillbeissues–whichaffectthequalityand detectedatanearlystagelengthofthelifeofapersonlivingwithcancer.Additionally,forchildrenandyoung > beofferedandgiventhebestpeople,theNCSIisconsideringissues treatmentsshouldtheyexperiencearoundfutureautonomyandtheabilityto furtherdiseaseorconsequencesofliveindependently. treatment

> knowthattheycanre-accessspecialistadviceandcarewithoutdelayshouldtheysoneed

22


> knowthattheiranxietiesandfearswillbetakenseriouslyandthattheywillhaveaccesstoemotionalsupportiftheywantit

> knowthattheywillbegivenadviceonfinancialbenefitsandonreturningtowork,educationortrainingshouldtheyneedthis

> knowthathealthandsocialcareteamswillworkeffectivelytogether,sothattheircareisseamlessandwellcoordinated

> knowthatcarewillbegivenasclosetohomeaspossible,recognisingthatsomespecialistservicescannotbeprovidedinalllocations

> knowthattheywillbegivenadviceonlivinghealthilytomaximisetheirchanceofremainingwellforaslongaspossible.

3.5 Peopleaffectedbycancerwillrightlyexpectthathealthandsocialcareprofessionalswillhelpthemtoachievethesegoalsandthatserviceswillbeorganisedtomaximisetheirsafetyandconvenienceandtominimisetheirproblemsandconcerns.Peoplewillwanttoknowthattheserviceswhichtheyaccesswill:

> careforthemandtreatthemasindividuals

> provideinformationateachstepinthecarepathwaysothattheyareempoweredtomakeinformeddecisions

> haveallthenecessaryexpertiseandfacilitiestodeliverhighqualitycare

> signpostthemtootherservicesasandwhentheyneedthem

> coordinatecareeffectivelybothwithinaserviceandacrossorganisationalboundaries.

3.6 Peoplewillexpectservicestobewellorganisedtodeliverpersonalisedcareforaslongastheymayneedit.

The Survivorship Pathway 3.7 TheNCSIhasdefineda‘survivorshippathway’todescribedifferentphasesofhealthorillnessthatapersonwithcancermayexperiencefromdiagnosisonwards.Thispathwaymayhelptoclarifythinkingaboutthedifferentservicesandsupportthatindividualsmayneedatdifferenttimesafteracancerdiagnosis.

23


3.8 Manycancersurvivorshaveallevidenceofcancereliminatedfollowingprimarytreatment,enterremissionandarecured.Theproportionvariesfromcancertocancer.Forexample,thevastmajorityofpeoplewithtesticularcancerwillhavenoevidenceofdiseasefollowingtreatmentanddonotexperienceanysubsequentrecurrenceofdisease.Manypeoplewithbreastandprostatecanceralsohavenoevidenceofdiseaseafterprimarytreatment,thoughsomewillexperiencearecurrencemonthsoryearslater.Theymaythenachieveasecondremissionorliveaproductivelifeforyearswithoutcancer.

3.9 Forothertypesofcanceronlyaminorityofpatientswillbefreeofdiseaseattheendofprimarytreatment.Lungcancerandpancreaticcanceraretypicalexamples.

3.10 Somepeoplewithactiveoradvancedcancermaydiefromtheircancerwithinamatterofweeksormonths.However,otherswilllivewith‘chronic’cancerformanyyearswithoutitgivingrisetosignificantsymptoms–theymightdie‘with’cancerbut‘from’anothercause.

3.11 Inbetweentheseextremes,manypeoplehavecancer,whichrespondstotreatmentforaperiodofmonthsoryearsandthenrelapses.Insomecases,thecancermayrespondtoasecondorsubsequenttreatment.Typically,however,cancersbecomelessresponsivetotreatmentovertime.

3.12 Althoughallevidenceofcancermaybeeliminatedfollowingtreatment,peoplecanbeleftwithshortorlong-termconsequenceseitherofthecanceritselforfromthetreatmentsusedtoeradicateit.Theseeffectscandevelopimmediatelyor

Remission Remains well

Long term effects

2nd andSubsequentTreatments

Endof

Life

Recurrence

Survivorship Assessment and Care Plan

DiagnosisPrimary

Treatment

Active &AdvancedDisease

24


onlybecomeapparentmanyyearslater,forexamplecardio-toxicityorsub-fertility.Surgery,radiotherapy,chemotherapyandnoveltargetedtreatmentssuchasHerceptincanallhaveshortorlong-termconsequences.Examplesoftheimpactthatthiscanhaveinclude:

> problemswithurine,bowel,rectumandsexualityinsurvivorswhohavehadcancersofthecervix,womb,rectum,bladderorprostate

> problemswithinsufficienthormoneproductioninpeoplewhohavehadcancersofthelymphglandsorthebrain

> increaseinincidenceofheartdiseaseinpeoplewhohavehadbreastorprostatecancer

> bonefracturesforthosewithprostatecancer.

A Service Perspective on Future Survivorship Care3.13 Eachyearmorepeoplewillbealivehavinghadadiagnosisofcancer.Thesepeoplewillhaveverydifferentlevelsofneedandforindividualslevelsofneedarelikelytochangeovertime.

3.14 Serviceswillthereforeneedtobetailoredtomeettheneedsoftheindividual,ratherthantheonesizefitsallmodelwhichhasbeenthetraditionalpatternoffollowupcancercare.Careshouldbetailoredtotheneedsoftheindividualandshouldbedeliveredasclosetohomeasiscompatible

withsafetyandquality.Manypeoplewillreceivecarefromacombinationoftheirprimarycareteamandfromarangeofspecialistsbasedinsecondaryortertiarycare.Effectivecoordinationandcommunicationbetweentheseserviceswillbevital.

3.15 Many‘routine’followupappointmentsservelittlepurposeintermsofdetectionofdiseaserecurrence.Inpracticethelargemajorityofrecurrencesaredetectedeitherbypatientsthemselvesoroninvestigationswhichcanbeplannedwithoutapatienthavingtoattendaclinic.Inaddition,patientsmayseedifferentcliniciansoneachoccasionmakingitdifficulttoprovidecontinuityofcare.Theseattendancestendtofocusonthemedicalaspectsoffollowup.Patientsfrequentlyreportthattheirpsychologicalorotherconcernsarenotadequatelyaddressed.

3.16 Apatient’ssurvivorshipcareplanshouldcontaindetailsofthetestsrequiredtomonitorforanyevidenceofrecurrenceandtheintervalsatwhichthesetestsareneeded.Inthefutureitisenvisagedthattheorderingoftestswillbeautomated(allowingpeopletochooseconvenienttimes)andthattestswillbedeliveredmorelocally.Thiswillremovetheneedforpatientstocometoanoutpatientclinic,havearequestformwrittenandthenreturnonanotherdayforthetest.

3.17 Severalalternativestoroutinemedicalfollowuphavebeentested.Theseincludenurse-ledfollowupandtelephonefollowup.Cliniciansandpatientswhohave

25


experiencedthesealternativemodelshaveingeneralbeenverypositiveaboutthem.Cliniciansandpatientswithoutsuchexperiencegenerallyexpressreservations.Theseandothermodels(e.g.theuseofe-mailbetweencliniciansandpatients)needfurthertestingandevaluation.Slavishadherenceto‘routinefollowup’should,however,bechallenged.

3.18 Cliniciansareincreasinglyseeingpatientsaspartnersindecisionmakingaboutcare.Infuturepatientswillalso,subjecttoinformedchoice,takeasmuchcontroloftheirownmanagementastheywish.Patientswill,however,needtobeassuredthattheycanaccessspecialistadviceandsupportasandwhentheyneedit.

3.19 Substantialchangestoworkingpracticeswillbeneededtomakethisnewmodelofsurvivorshipcareworkeffectively.Thesechangeswillaffect:

> Assessmentandreassessmentofindividual’sneeds

> Provisionofinformation

> Careplanning

> Supportforself-management

> Coordinationofcare

> Abilitytoenablerapidre-entrytospecialistservices

> Surveillanceduringremission

> Supportduringremission

> Supportforthosewithmediumandlong-termconsequencesofcancertreatment

> Supportforthosewithactiveandadvanceddisease

> Transitiontoendoflifecare

> Communicationbetweenhealthprofessionals.

3.20 Throughouttheircarepathway,peoplewishtoknowthattheircareiswellcoordinated.Thiswillreducefear,uncertainty,duplicationofeffortanduseofresources.

3.21 Surveyshaveindicatedthatpeopleaffectedbycancervaluetheconceptofa‘keyworker’veryhighly.Thechallengeistoturntheconceptintoareality,giventhatnoindividualworks24/7withoutholidays.Thereisthereforeaneedtopilotandevaluatedifferent‘keyworker’modelswhichallowforthis.Inpracticethepositionofkeyworkermaywellchangeovertime.Aclinicalnursespecialistmaytakeontherolearounddiagnosisandthenhandovertherelay-batontoachemotherapynursespecialistifandwhenapatientstartschemotherapy.LatertheGPmaytakeonthisrole.Whatisimportantisthatthepatientshouldknowwhoistheirfirstpointofcontactbothwithinandoutsidenormalworkinghoursandthatthepersonwhoisthepointofcontactrespondsquicklyandappropriately.

26


3.22 Manyofthechangesthatwillberequiredarealreadyinuseinsomeareasandothersarecurrentlybeingpiloted.Itwillbeessentialtoevaluatenewservicemodelsastheyaredevelopedandtolearnfromexperienceinothercountries.

Five shifts3.23 TheNCSIhasidentifiedfiveshiftswhichareneededintheapproachtothecareandsupportforpeoplelivingwithandbeyondcancer.

The NCSI Vision for future survivorship careShift one – A cultural shift in the approach to care and support for people affected by cancer

3.24 Thefirstoftheseshiftsisaculturalorattitudinalshiftinthecareandsupportforpeopleaffectedbycancer.Thisisashiftfromapredominantfocusoncancerasanacuteillnesstreatedintheacutesectortoagreaterfocusonrecovery,health,well-beingandreturntoworkaftercancertreatment.Thisshiftwillenablepeopleaffectedbycancertobepreparedforthelongterm–forlivingwithandbeyondcancer.

Five shifts in care and support for people living with and beyond cancer:

1.aculturalshiftintheapproachtocareandsupportforpeopleaffectedbycancer–toagreaterfocusonrecovery,healthandwell-beingaftercancertreatment.

2.ashifttowardsholisticassessment,informationprovisionandpersonalisedcareplanning.Thisisashiftfromaone-sizefitsallapproachtofollowuptopersonalisedcareplanningbasedonassessmentofindividualrisks,needsandpreferences.

3.ashifttowardssupportforself-management.Thisisashiftfromaclinicallyledapproachtofollowupcaretosupportedself-management,basedonindividualneedsandpreferences.Thisapproachempowersindividualstotakeonresponsibilityfortheirconditionsupportedbytheappropriateclinicalassessment,supportandtreatment.

4.ashiftfromasinglemodelofclinicalfollowuptotailoredsupportthatenablesearlyrecognitionoftheconsequencesoftreatmentandthesignsandsymptomsoffurtherdiseaseaswellastailoredsupportforthosewithadvanceddisease.

5.ashiftfromanemphasisonmeasuringclinicalactivitytoanewemphasisonmeasuringexperienceandoutcomesforcancersurvivorsthroughroutineuseofPatientReportedOutcomeMeasuresinaftercareservices.

27


3.25 Thisisashiftinwidelyheldbeliefsaboutcancer.AchievingtheNCSIvisionforimprovedcareandsupportforcancersurvivorswillrequireashifttowardsawiderunderstandingthatcancerisacomplexrangeofdifferentconditionswithavarietyofillnesstrajectories.Cancerisanillnesswhichmightbecuredorwhichmighthavethecharacteristicsofalongtermorchronicconditionthatpeoplecanlivewithformanyyears.Differentaspectsofthatchronicillnesswillrequirespecialistdiagnosisandtreatment.

3.26 Thisapproachwillimprovequalityoflifeforpeoplelivingwithcancerandenablethemtoliveahealthyandactivelifeandresumeeverydayactivities,includingreturningtowork.Forchildrenandyoungpeople,thisshiftwillenhancefutureautonomyandaccesstoeducationandemployment.

3.27 Throughthisshift,cancersurvivorswillbesupportedbyaftercareservicesthatarefocusedonmaximisinghealthandwell-beingandminimisingthelong-termphysical,emotionalorsocialconsequencesofcancerandcancertreatment.

3.28 Underpinningthisshiftismovingfromtraditionalmedicallyledfollowupservicesthathavetraditionallyfocusedonsurveillancetestsandinvestigationstoidentifywhethertherearesignsofcancerrecurrence,towardsaftercareservices,whichlinkacutespecialist,primarycare,palliativecare,31rehabilitationandsupportservices.

Shift Two – Assessment, information provision and care planning

3.29 Thesecondshiftistowardsassessment,informationprovisionandpersonalisedcareplanning.Thisisashiftfromaone-sizefitsallapproachtofollowuptopersonalisedinformationandcareplanningbasedonassessmentofindividualrisks,needsandpreferences.

3.30 Careplanningwillstartatthepointofdiagnosis.Assessmentforthesurvivorshipphaseofcarewillbecarriedoutatthepointofcompletingactivetreatmentandatanysubsequent‘transition’points,forexampleifthereisfurtherdiseaseoramovetowardsendoflifecare.Theassessmentwillidentifyindividualsatlow,moderateorhighriskofconsequencesoftreatment,furtherdisease,co-morbidities,psychologicalproblemsordisabilities.

3.31 Thisassessmentwillshapedecisionsovertheinformationandsupportthatanindividualwillrequireandacareplanandinformationprescriptionisdevelopedinpartnershipwiththeindividualandtheircarerifappropriate.

3.32 Followupcareofcancerpatientshastraditionallybeenfocusedheavilyonthedetectionandtreatmentofrecurrentorprogressivedisease.Clinicianshavefrequentlynottakenaholisticapproachtoneedsassessment,eitherbecauseofalackoftrainingorbecauseofalackoftimeinbusyclinics.

31 Activeholisticcareofpatientswithadvancedprogressiveillness,focusingonmanagementofpainandothersymptomsandprovisionofpsychological,socialandspiritualsupport.

28


3.33 Tomakeholisticassessmentfeasibleonarepeatedbasisinvolvementofpatientsintheprocesswillalmostcertainlybecomeessential.ExperienceinindividualcentresintheUKandUSAhasshownthatthevastmajorityofpeoplearehappytocompletequestionnairesabouttheircurrentproblemsandconcernsusingmoderndigitaltechnology(e.g.touchscreentablets).Theinformationcanthenbemadeavailabletotheclinicianinaformatwhichcanhelptoshapetheconsultationandtoidentifydomainswhichrequirefurtherassessmentfromanexpert(e.g.afinancialbenefitsexpertoranexpertinpsychologicalproblems).

3.34 Verbalinformationsharingwillremainofparamountimportance,butthiswillneedtobesupplementedmoreeffectivelywithtailoredorpersonalisedwritteninformation.Atpresenttheprovisionofwritteninformationisveryvariable,despitetheexistenceofhighqualitymaterials.Amajorcancerpatientinformationprogrammetoimprovetheprovisionofinformationforpeopleaffectedbycanceriscurrentlyunderway.ThisinvolvesapartnershipbetweenMacmillanCancerSupport,CancerResearchUK,theNationalCancerActionTeam,NHSChoices,CancerNetworksandlocalmultidisciplinaryteams.

3.35 Thevisionforthefutureisthathighqualityinformationmaterialswillbeavailableelectronicallyandwillbepersonalisedtoberelevanttoindividuals.Clinicianswillbeabletowritean‘informationprescription’whichwillthen

bedispensedeitherintheclinicsettingorfromaninformationcentre.

3.36 Careplanningisnotaone-offevent.Itwillbeneededatdiagnosis,atdifferentstagesoftreatment,attheendoftreatmentandatsubsequentkeypointsinthecarepathway.Thesemayincludethepointofrecurrenceorprogression,thedevelopmentoflongtermconsequencesorthetransitiontoendoflifecare.

3.37 Careplanningwillbeaccompaniedbycarefulassessmentandprovisionofinformation.Careplanningshouldcoveradviceon:

> Managementofcurrentphysical,psychological,socialandspiritualproblemsandconcerns

> Financialbenefits(whereappropriate)

> Returntowork(whereappropriate)

> Lifestyle(e.g.smoking,dietandexercise)

> Accesstosupportgroupsandself-managementtrainingprogrammes

> Risksandsignsofrecurrenceandplannedsurveillancetests

> Risksoffuturepsychologicalproblems,includingfearofrecurrence

> Risksandsignsofconsequencesoftreatment

29


> Whotocontactaboutproblemsandconcernsbothwithinandoutsidenormalworkinghours.

3.38 Thereisstillmuchtolearnabouthowcareplanningcanbestbedone.OnemodeltobetestedbytheNCSIisthatofa‘healthandwell-beingclinic’attheendoftreatmentwherepatientswouldreceiveinformationandsupportfromadoctor,nurseandhaveaccesstoarangeofotherexperts(e.g.counsellors,welfareofficers,physiotherapistsandoccupationaltherapists)atasinglevisit.

Shift Three – Support for self-management

3.39 Wherepossiblethereshouldbeashiftfromaclinicallyledapproachtofollowupcaretosupportedself-management,basedonindividualneedsandpreferenceswithappropriateclinicalsupport.

3.40 Thisshiftdrawsonthesupportedself-managementapproach,whichhasworkedsuccessfullyforthosewithotherlongtermconditions.Thisshiftstartsatthepointofdiagnosis,withanewrelationshipbetweenhealthcareprofessionalsandpatients.Thisnewrelationshipofcollaborativeinteractionsupportsandempowersindividualstotakeonresponsibilityfortheircondition,supportedbytheappropriateclinicalassessmenttoensurethatphysicalorotherissuesrequiringspecialistdiagnosisandmanagementaredealtwith.

3.41 Thisshiftcanbefacilitatedinanumberofways,includingusingsupportthroughtelephone,textande-technology.

Foryoungpeoplethisshiftincludescareandsupportwhichempowersthemtobecomeincreasinglyindependentandtoliveautonomously.

3.42 Ifpeoplearetobecomeempoweredtotakethelevelofcontroloftheirconditiontotheextentthattheywish,theywillneedaccesstoeducationandsupportinadditiontoassessmentandcareplanning.Sucheducationandsupportcanbegiveninseveraldifferentways.Clinicalnursespecialistsalreadyhaveaconsiderableroleinthisarea,butcannotcurrentlybeexpectedtohaveexpertiseortimetocoverallaspectsofsurvivorship withoutfurthertrainingorcapacity.

3.43 Severalmodelsofeducationandtrainingforpeopleaffectedbycancerhavebeendeveloped,aimedatdifferentpointsonthecarepathway.Maggie’sCancerCaringCentreshavedevelopeda‘Gettingstartedwithcancertreatment’workshopforpeopleaffectedbycancertobetterunderstandcancertreatment,sideeffectsandwellbeing.MacmillanCancerSupportrun‘NewPerspectives’–aself-managementcourseforpeoplelivingwithcancerfacilitatedbypeoplelivingwithcancer.TherearealsoseveralinitiativesacrossEnglandthataimtosupportpeopleatthetransitionpointofmovingfromtreatmenttoaftercare.AgoodexampleofthisisinSouthDevonHealthcareTrust,wherethecharity-funded‘MovingOn’Programmehelpswomenwhohavefinishedtreatmentforbreastcancerandare‘movingon’tothepost-treatmentphase.

30


Itaimstoteachthemskillsandstrategiestohelpmanagethesituationstheymayfacemoreeffectively,usingmutualsupportfromallthewomenattendees.OthercoursesarerunfromCancerInformationcentres,suchasthe‘Movingon’courseatBuckinghamshireHospitalsNHSTrust.Thisisa6-weekprogrammeforpatientsattheendofactivetreatment–runbytheMacmillanCancerInformationandSupportService.Eachweekisthemedandtacklesthevariousrehabilitationissuesthatpeoplemightface,focusingonemotionalandpracticalsupportbutadaptingtoeachcohorts’needs.

Shift Four – Tailored support for potential consequences of treatment or further disease

3.44 Thefourthshiftisashiftfromone-sizefitsallclinicalfollowuptoamorepersonalisedapproachenablingpeopletopreparefortheconsequencesoftreatmentandtoencourageearlyrecognitionofsignsandsymptomsoffurtherdisease.Thisapproachwillbe‘risk-adapted’–withmoreintensesurveillancebeingavailabletothosewhoareatparticularriskofdevelopingfurtherdiseaseorexperiencingadverselonger-termconsequencesoftreatment.

3.45 Thisshiftwillmeanthatpeopleaffectedbycancerknowwhatmighthappen,whattodoandwhotocontact.Itwillmeanthehealthcaresystemactsappropriately,rapidlyandresponsivelytoindividualswhohaveconcerns.

3.46 Theshiftisunderpinnedbyriskassessment,awareness,preparationandinfrastructuretosupporttheearlyrecognitionofsignsandsymptomsoffurtherdiseaseoradverseconsequencesoftreatment.Italsorequiressystemstobeinplaceforrapidaccesstospecialistservices.

3.47 Peoplewhohavereceivedtreatmentforcancermaybeatriskofdevelopingproblemsrelatedtothetreatmentseveralyearslater.Theriskofsuchanoccurrencewilldependonthenatureofthetreatment(e.g.surgery,radiotherapy,chemotherapyetc.)and,inthecaseofradiotherapytheparticularorgansthatwillhavereceivedadoseofradiation.

3.48 Thefirststepinmanagingtheseconsequencesofcancertreatmentsistomakethepatientawareoftherisksandthelikelytimecourse(e.g.monthsoryearsaftertreatment)forsuchconsequencestooccur.Potentialconsequencesoftreatmentshouldbediscussedpriortoconsenttocancertreatment.Patientsshouldbeinformedaboutwhatsignstolookoutforandwhattests,ifany,canbedonetodetectproblemsatanearlystage.Thesepotentialconsequencesoftreatmentshouldalsobediscussedattheassessmentandcareplanningsessionattheendoftreatment.Thereportingandanalysisofconsequencesofcancertreatmentshouldbecomeembeddedinroutineclinicalpractice.

3.49 Patientsmayhaveongoingactivediseasefromthetimeoffirstdiagnosis.

31


Alternativelytheymayexperiencearecurrenceorspreadoftheircancerfollowinganinitialperiodinremission.Theclinicalpatternofactive/advanceddiseasevarieswidely.Althoughpredictionscanbemadebyexperiencedcliniciansofthelikelypatternofdiseaseforanindividualpatient(basedonthetypeofcancer,theextentofspreadandotherfactors),itisimpossibletobecertainaboutthediseasecourseforanindividualpatient.

3.50 Individualswilldifferintheamountofinformationtheywishtoreceiveabouttheirconditionandthelikelyprognosis.However,increasinglypeopledowanttobeactivepartnersindecisionmakingthroughouttheirillness.Patientsshouldknowthattheyhavereadyaccesstoinformationandexpertadvicewhenevertheclinicalsituationchangesandthattheywillhaveaccesstothewiderangeofserviceswhichtheymayneed.

3.51 Thesemay,forexample,include:

> Diagnostics

> Surgery,radiotherapy,chemotherapy

> Noveldrugorothertreatments

> Nursingandsupportivecare

> Rehabilitationservices(e.g.physiotherapy,occupationaltherapy,dietetics,speechandlanguagetherapy)

> Counsellingservices

> Financial/benefitsadvice

> Socialcareservices

> Specialistpalliativecareservices.

3.52 Modelsforoptimisingtreatmentrecommendationsandforcontinuityofcareforthosewithactive/advanceddiseasearelesswelldevelopedthanthosewithnewlydiagnosedcancer(orforthosebeingfollowedupinremission).Giventhevariableandchangingclinicalcourseofactive/advanceddisease,traditionalmultidisciplinaryteammeetingsmaynotprovideapracticalwayforward.

3.53 During2010,theNCSIwillworktodevelopnewmodelsofcareforpeoplewithactive/advancedcancer.Thesemayinclude‘virtual’teamslinkedbymoderntechnology,withtheoptiontocallcaseconferencesasandwhennecessary.

Shift Five – Measuring outcomes and experience

3.54 Thefinalshiftintheapproachtocareandsupportofcancersurvivorsisashiftfromanemphasisonmeasuringclinicalactivitytoanewemphasisonmeasuringexperience,concernsandoutcomesforcancersurvivors.Thisshiftreflectstheimportanceofunderstandingthecurrentconcernsandneedsofsurvivors.ItisanewemphasisonmonitoringoutcomesforcancersurvivorsthroughroutineuseofPatientReportedOutcomeMeasuresinaftercareservices.Itisalsoashifttomeasuringsurvivors’experienceofcare,includingthroughsurvivorshipquestionsbeingincludedintheNationalCancerPatientExperienceSurveyProgramme.

33

4.Personalisedassessment,informationprovisionandcareplanning

Case study

Fran,57,London,diagnosedwithcanceroftheretinain2006.

‘Oncemytreatmentwasover,Iwasabandoned.Therewasnosystemtosupportme,nooneaskedmehowIwouldcopeemotionally,andwhenIstartedsufferingsideeffects,IfeltlikeIwasmakingafussaboutnothing.Theabsolutesilenceofsupportwasdeafening.TwoyearsonandI’mstilllackinginenergyandIexperienceflashinglightssodoIstillhavecancer?Hasitbeencured?Isitgoingtoreturn?NooneistheretoaskmyquestionsandIdon’tknowwhototurntofortheanswers.’

4.1 TheNationalCancerSurvivorshipInitiative(NCSI)hasidentifiedashifttowardsassessment,informationprovisionandcareplanningascrucialtoimprovingcareandsupportforcancersurvivors.

4.2 Attheendoftreatmentcancersurvivorsdonotroutinelyhavean

opportunitytodiscussandaccesssupportfortheneedsthattheymayhavefollowingtheirtreatment.Whilemanypatientswanttotakegreatercontroloftheirownhealthandwellbeing,theycanonlydosoeffectivelyiftheyhaveaccesstotheappropriateinformationandsupport.

4.3 Individuals’needswillchangeovertime.Careplanningwillstartatthepointofdiagnosis.TheNCSIvisionisthatassessmentforthesurvivorshipphaseofcarewillbecarriedoutatthepointofcompletingcancertreatmentandatanysubsequent‘transition’points.Thesetransitionpointsmightincludethedevelopmentofconsequencesoftreatmentwhichneedexpertassessmentandmanagementorwhenthereisfurtherdiseaseoramovetowardsendoflifecare.

4.4 TheNCSIvisionisthatthisassessmentcoversthefullrangeofneedsofindividuals,includingphysicalandlifestyleneeds,social,financialadviceandoccupationalsupportneeds,psychologicalwellbeingandspiritualneeds.Theassessmentwillidentifyindividualsatlow,

‘Our vision is that during initial cancer treatment patients will self-assess their needs against a holistic set of issues (medical, emotional, financial, practical and spiritual). Issues which they flag will be further assessed in depth, a care plan will be developed with them, and they will be signposted to information and services to meet those needs. There will be reassessment of needs at key transition points.’

CiaránDevane,ChiefExecutive,MacmillanCancerSupportandChairoftheNCSIAssessmentandCarePlanningWorkStream

34


moderateorhighriskofconsequencesoftreatmentorfurtherdisease.

4.5 Theassessmentmightinvolvepeopleprovidingspecificinformationabouttheirproblemsandconcerns(e.g.viatouchscreentechnology)toidentifyareasrequiringmoredetailedassessmentanddiscussionwithahealthcareprofessional.

4.6 TheNCSIassessmentandcareplanningworkstreamisproposingtopilotapost-treatment,or‘healthandwellbeing’clinicinearly2010.Thecliniciseffectivelyameetingforpatientswitharangeofhealthcareprofessionals,complementarytherapistsandthevoluntarysectorandachancetointeractwithotherpatientsandcarers.Theproposalisthatapost-treatmentclinicwouldbeavailabletopeopleattheendofcancertreatment.Thecliniccouldprovideanopportunitytoinformandpreparepatientsforthelongterm,livingwithandbeyondcancer.Thepreparationswillincludewhattolookforintermsoflateeffectsorrecurrenceandpsychologicalimpact.Theclinicwilldevelopanewrangeofreferralpathwaysforthosepatientswithlateeffectsofcancertreatmentrequiringspecialistevaluation.Therewouldbetheopportunitytocoverspecificissues,forexamplecolostomycare,prostheticcare,lymphoedema,bodyimageandsexuality.Theclinicwouldinformcancersurvivorsandtheirfamiliesandcarersabouttheongoingsupportandcarethatisavailabletothem.Theclinicwouldprovidean

opportunitytoaccessinformationtosupportsurvivorstoreturntoasnormalalifeaspossible,includinginformationrelatedtoworkandwelfarebenefits,lifestyleanddietandsupportgroups.

4.7 Thisassessmentshapesdecisionsovertheleveloffuturesupportthatanindividualwillrequireandacareplanwillbedevelopedinpartnershipwiththeindividualandtheircarer.Thiscareplanwillincludeinformationaboutsourcesofsupportandwhotocontactifanindividualhasconcerns.

4.8 Apersonalisedapproachtoaftercarewillensurethattheneedsofallgroupsaremetandhelpaddressinequalitiesinaccessandoutcomes.Peoplewithspecificneedssuchaschildrenandyoungpeople,orthosewhofinditdifficulttoengagewiththecurrentsystemoffollowup,willhaveanopportunitytoconsiderthewholerangeoftheirneedsandensureaftercareservicesaretailoredtotheirneeds.

4.9 Theexperienceofusingpersonalisedcareplanningforpeoplewithlongtermconditionsshowsthattheapproachcanleadtoarangeofbenefitsforindividuals,commissioners,providersofservicesandthehealthandsocialcareworkforce.ThesebenefitsweredescribedintheDepartmentofHealth’sguidanceforcommissioners‘SupportingPeoplewithLongTermConditions’32andincludeenablingpeopletostayhealthierforlongerbypromotinghealththroughinformationandselfcareandenablingindependenceandachievement

32 DepartmentofHealth.SupportingPeoplewithLongTermConditions.CommissioningPersonalisedCarePlanning.Aguideforcommissioners.London2009

35


ofgoalssuchasreturningtowork.TheEndoflifeCareStrategy33alsoemphasisestheimportanceofpersonalisedcareplanning,includingadvancecareplanning.

4.10 ThisshiftisconsistentwiththeNICEguidanceonsupportiveandpalliativecare.34InJanuary2007,theNationalCancerActionTeampublishedaspecificationfortheholisticcommonassessmentofsupportiveandpalliativecareneedsforadultswithcancer.35Thisguidanceincludedtheholisticassessmentoftherangeofneedsofadultcancerpatients.

4.11 TheNCSIassessmentandcareplanningworkstreamhasdevelopedanassessmentandcare-planningframeworkforthoselivingwithandbeyondcancer.Theframeworkensuresthat,atkeypointsacrossthepatientpathway,post-treatmentcareisholisticallyassessed.Thisframeworkisbeingpilotedintwelvetestcommunities,whoarelookingatitseffectivenessforpatientswithcolorectal,lung,headandneckcancerandmyelomaatdifferentstagesinthepatientpathway,includingwithpatientswithadvanceddisease.EvaluationofthispilotingworkwillbecompletebySeptember2010.

4.12 TheNCSIchildrenandyoungpeopleworkstreamarepilotingpersonalisedcareplansandpatientinformationprovisionforchildrenandyoungpeople.Thecare

planwaslaunchedinSeptember2009forpilotingbychildrenandyoungpeopletestcommunitiestoensureitispracticaltoimplementlocally.

4.13 Aholisticassessmentwillidentifyindividualinformationneeds.Theseneedscanbemetthroughadiscussionwithahealthcareprofessionalandtheymightbemetthroughatailoredinformationprescriptionwhichsignpostsindividualstohigh-qualityinformationandsupport.

4.14 Theshifttowardstailoredsupportforearlyrecognitionofrecurrenceandconsequencesoftreatmentisunderpinnedbyawareness,preparationandsystemsinprimaryandsecondarycareservicesforrecognisingearly,potentialsignsoffurtherdiseaseandconsequencesoftreatment.TheNCSIassessmentandcareplanningworkstreamhavedevelopedaframeworkforanendoftreatmentsummaryrecord.Theintentionisthattheendoftreatmentrecordwouldprovideclearlyidentifiableinformationthatwillenablehealthprofessionalsinprimarycaretoinformandsupportsurvivorsandtheircarersintheiraftercare.Twelvetestcommunitiesaretestingtheapplicationoftheframeworktoseewhetherthisimprovestheprovisionofinformationtoprimarycareandwhatimpacttheendoftreatmentsummarymakestotheexperienceandhealthandwellbeingoutcomesforcancersurvivors.

33 EndofLifeCareStrategy,DepartmentofHealth,July2008.

34 NationalInstituteforHealthandClinicalExcellence.Guidanceoncancerservices:improvingsupportiveandpalliativecareforadultswithcancer.(2004)

35 CancerActionTeam(2007)HolisticCommonAssessmentofSupportiveandPalliativeCareNeedsforAdultswithCancer:AssessmentGuidance.

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Example: Sheffield Profile for Assessment and Referral to Care

TheUniversityofSheffieldhasdesignedanassessmenttool‘SheffieldProfileforAssessmentandReferraltoCare’(SPARC),incollaborationwithclinicianswithinNorthTrent,andtheNetworkSupportiveandPalliativeCareGroup(NSPCG).Thistoolisdesignedtobecompletedbythepatient(withsupportfromcarersifneeded)andformsthestartingpointfortheholisticneedsassessmentprocess.SPARCisascreeningquestionnairethatexploresavarietyofissuesandmayhelpthepatientandcarerstoreflectontheirneeds.

Theissuescoveredinthequestionnairefallintothefollowingdomains:

> physical> psychological> religious/spiritual> independence/activity> family/social> treatment> information> communication

UseoftheSPARCtoolprovidestheprofessionalmakingtheassessmentwithanopportunitytoaskthepatient‘’whatisconcerningyoumost’’intheknowledgethattheywillhavebeenencouragedtothinkaboutthisquestionthroughthequestionnaire.Thisisintendedtoenableaconversationthatwillhavetheperson’sconcernsatthecentre.

Risk Stratification4.15 TheNCSIresearchworkstreamisworkingwiththeNationalCancerIntelligenceNetwork(NCIN)todevelopasystematicapproachtoriskstratificationtoenableapersonalisedapproachtoassessmentandcareplanning.

4.16 Theaimoftheworkistodevelopatoolorframeworkwhichwillenabletheaftercareofcancersurvivorstobeplannedbasedonlikelyorpredictedneed.Eventsorstagesalongthesurvivorshipjourneywillbeidentifiedthatareimportanttopatientswithparticularcancers.Thelikelihoodoftheseoccurringwillbebasedonarangeoffactorsrelatingtocancertype,treatment,demographicandlifestylefactorsandco-morbidconditions.Arangeofmethodologicalapproacheswillbeusedtoquantifythelikelihoodofeventsoccurringandfromthatapredictivemodelcanbedevelopedovertimeforeachcancertype.Theworkwillstartwithcancerswheretherearethemostdataavailableandwheretherelevantresearchhasalreadybeenundertaken.

4.17 TheNCSIchildrenandyoungpeopleworkstreamhasalsocommissionedariskstratificationtoolthatwillenabletheclassificationofchildrenandyoungpeoplewhoareathigh,mediumandlowriskforadversehealthoutcomes,followingcancertreatment.TheworkstreamisworkingwiththeUniversityofBirminghamtodevelopthetool,whichwillbebasedondataavailablefromtheBritishChildhoodCancerSurvivorStudy.

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39

5.Supportedself-management

Case Study

Dave,59,diagnosedwithnonHodgkin’slymphomain2007.

‘Threethingswerelifesaversforme.Myspecialistnursewho‘heldmyhand’fromdiagnosistocompletionoftreatment;Cancerbackup’stelephoneservice(nowmergedwithMacmillan)whohelpedmeonnumerousoccasionstodealwitheveryaspectofhavingandlivingwithcancer,andtheMacmillan‘LivingwithCancer‘coursewhichIsawadvertisedinmydoctor’ssurgery.Thiscoursegavemethepracticalandemotionaltoolstofaceuptomysituation,torestoreconfidenceandrebuildmylife.Thecoursememberswereaconstantsourceofsupporttoeachotherandthoseofuswhoareleftcontinuetomeetsocially.’

5.1 Patientengagementinhealthandinparticularself-managementiswidelyrecognisedascrucialtoimprovementincareandoutcomesforpeoplewithlong-termconditions.36373839Supportedself-managementisaphilosophyandapproachdefinedas:‘whathealthservicesdoinordertoaidandencouragepeoplelivingwithalongtermconditiontomakedailydecisionsthatimprovehealthrelatedbehavioursandclinicalandotheroutcomes’.40Self-managementsupportenablespeopletomakeinformedchoices,toapplyskillstonewproblemsastheyariseandtopracticenewhealthandlifestylebehaviours.

5.2 TheNationalCancerSurvivorshipInitiative(NCSI)hasidentifiedtheneedforashiftfromaclinicallyledapproachtofollowupcaretosupportedself-management,basedonindividualneedsandpreferences.

36 SkillsforHealth,SkillsforCare,CommonCorePrinciplestoSupportSelfCare.2008

37 DepartmentofHealth,SupportingPeoplewithLongTermConditions,2005)

38 DepartmentofHealth,SupportingPeoplewithLongTermConditionstoSelfCare,2006

39 DepartmentofHealth,GenericChoiceModelforLongTermConditions,2007

40 AdaptedfromTheHealthFoundation,Co-creatingHealthProgramme2008

‘Our vision is of a transformed approach to cancer from treating it as an acute or end of life care condition to one where cancer is managed by people in partnership with the clinical team and where current follow up services are replaced by after care services based on a model of supported self-management tailored to individual need.’

JessicaCorner,ChiefClinician,MacmillanandChairoftheNCSISelf-ManagementWorkStream

40


5.3 Thisshiftdrawsonthesupportedself-managementapproach,whichhasworkedsuccessfullyforthosewithotherlongtermconditions.Thisshiftstartsatthepointofdiagnosis,withanewrelationshipbetweenhealthcareprofessionalsandpatients.Thisnewrelationshipofcollaborativeinteractionsupportsandempowersindividualstotakeonresponsibilityfortheircondition,followingappropriateclinicalassessmenttoensurethatphysicalorotherissuesrequiringspecialistdiagnosisandmanagementaredealtwith.Thisshiftcanbefacilitatedinanumberofways,includingusingsupportthroughtelephoneanddigitaltechnology.Foryoungpeoplethisshiftincludescareandsupportwhichempowersthemtobecomeincreasinglyindependentandtoliveautonomously.

5.4 TheNCSIself-managementworkstreamhasidentifiedthreeenablersforsupportedself-management:

> Self-managementeducationandtrainingprogrammes

> Skillsdevelopmentprogrammesforprofessionals

> Institutionalsupportforserviceredesign.

5.5 Self-managementtrainingandeducationmightbeviagroup,one-to-onetrainingorpeersupportnetworks.Thetrainingisintendedtobuildself-managementskillssuchasagendasetting,goalsettingandactionplanning.Sessionsmostpositivelyratedbyarangeofcancer

survivorswhowereparticipantsin29self-managementprogrammesnationwideincludedactionplanningandpositivethinking.41

5.6 Supportedself-managementrequirestraining,supportanddevelopmentforprofessionalsprovidingcareandre-organisationofservicessothattheyarebasedonempoweringandsupportingindividualstotakeonfullresponsibilityfortheircondition.Thesecondenabler,therefore,istheprovisionofskillsdevelopmentprogrammes,whichprovidesupportforprofessionalstoreflectontheirconsultingstyles,tobuildonwhatworkswell,tostopwhatdoesnotworkwellandbuildnewskills.

5.7 Thethirdenableristhesupportrequiredbyorganisationstoredesigntheirsystemsandservices.Thismightincludetheuseoftechnologiesincludingthetelephoneandinternet.

5.8 Self-managementmightincludeanindividualengaginginactivitieswhichprotectandpromotetheirhealthandwellbeing,activitiestomonitorsymptomsoffurtherdiseaseortheconsequencesoftreatment,aswellasmonitoringtheimpactoftheconditiononfunctioning,emotionsandrelationships.Theappropriatenessandsuccessofasupportedself-managementapproachwilldependuponhoweachpersonvaluesandunderstandstheirownroleandabilitiestocontributetothemanagementoftheircare.Through

41 MacmillanCancerSupport,‘LivingwithCancer’,Report2008

41


assessmentandskilledcommunication,healthprofessionalscanassessaperson’sreadinessforsupportedself-management.

5.9 Thosewhosurvivecanceraremorelikelythanthehealthypopulationtodevelopasecondcancerandhaveasignificantlyhigherchanceofdevelopingheartdiseaseorbonefractures.Thiscouldbereducedbylifestylechange,forexample,exercise,butsignificantnumbersofcancersurvivorsareunawareoftheimportanceoflifestylefactorsfollowingtheirtreatmentforcancer.35%ofrespondentstotheMacmillanHealthandWellBeingSurveywereunawareoftheincreasedimportanceofahealthylifestyle,33%didnothavealltheinformationand42%wantedmoreinformationtomakedecisionsabouttheirlifestyle,includingmoreinformationondiet,weightmanagement,stressmanagementandexercise.42

5.10 TheNCSIself-managementworkstreamhasbeenlookingattheimpactofsupportforhealthandwellbeingforcancersurvivors.Thereisemergingevidencetoshowthatlifestylefactorsincludingphysicalactivityanddiet,caninfluencetherate

ofcancerprogression,improvequalityoflife,reducesideeffectsduringtreatment,reducetheincidenceofrelapse,andimproveoverallsurvival.43444546Arangeofstudieslookingatdietandlifestyleafterabreastcancerdiagnosissupporttheconceptthatdietandlifestylechoicescanmakeadifferencetobreastcancersurvivalaswellashelpingwomenfeelbetter.47ResistanceexercisehasbeenadvisedbytheNationalInstituteforHealthandClinicalExcellencetohelpcombatfatigueinmenwithprostatecancer.48However,TheProstateCancerCharity’ssurveyofmenwithprostatecancerfoundthat86%ofmenwhoexperiencedfatiguewerenottoldabouttheseresistanceexercises.49

5.11 Assessmentandplanningforlifestylechangeandsupportshouldbecomepartofroutinecareduringtreatmentandaftercareforallcancersurvivors.Cancerservicescouldlearnfromrehabilitationprogrammesforexampleincardiology,wheresystematiclifestyleassessmentandlifestyleplanningoccurs.Thiscouldbeachievedthroughspecificclinicsorincommunitysettingsandwithleisureservices,andcouldbestaffedwithactivityandnutritionprofessionals.50

42 It’sNoLife.FollowuptoMacmillanCancerSupport,HealthandWellBeingSurvey,2008

43 IrwinM.L.etal(2008)Influenceofpreandpostdiagnosisphysicalactivityonmortalityinbreastcancersurvivors:TheHealth,Eating,ActivityandLifestyleStudy,JournalofClinicalOncology,(26),24,3958-3964.

44 ThomasR.DaviesN.(2007)Lifestyleduringandaftercancertreatment,ClinicalOncology;19;616-627

45 MeyerhardtJ.A.etal(2006)ImpactofphysicalactivityoncancerrecurrenceandsurvivalinpatientswithstageIIIcoloncancer;findingsfromCALGB89803.JclinOncology,24;3535-3541

46 HolmesM.D.etal(2005)Physicalactivityandsurvivalafterbreastcancer,JAmMedAssoc,293;2479-2486

47 BrownC.H.BaidasS.M.HajdenbergJ.J.(2009)LifestyleinterventionsinthePreventionandTreatmentofCancer,AmericanJournalofLifestyleMedicine,3;(5)337-348

48 ProstateCancer:DiagnosisandTreatment(fullguideline).NICE.Feb2008

49 Hamperedbyhormones?Addressingtheneedsofmenwithprostatecancer.TheProstateCancerCharity.June2009.

50 RabinC.(2009)Promotinglifestylechangeamongcancersurvivors:whenistheteachablemoment?AmericanJofLifestyleMedicine,3;(5)369-378

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Evidenceiscontinuingtoemergeastowhenthe‘teachablemoment’isforassessingandsupportinglifestylechange,butthereisincreasingclarityastotheneedforsomeongoingcoachingforpatientsso

thatattitudesandbehaviourscanchangeforthelongterm.51

Example: A new aftercare and support service for breast cancer patients at Good Hope Hospital.52

Thistestcommunityhasredesignedthecareandsupportpathwayforbreastcancerpatientswhohavecompletedtreatmentforprimarybreastcancer.

Thetestcommunityhasredesignedaftercareservicessothatitisproviding(i)atelephonebasedsupportservicebytrainedcancernurses,(ii)aservicewhichprovidespracticalhomebasedsupport,(iii)ahomebasedcaremanagementserviceforcomplexneedsand(iv)atailoredself-managementprogrammeforpatients.Serviceswillbeaccessedbypatientsfollowingindividualassessmentandatailoredsurvivorshipcareplan.Allpatientswillbeofferedparticipationinanewself-managementprogrammewhichisintegratedwithinthenewaftercarepathway.

Theself-managementprogrammeisbasedonacoursedevelopedatCoventryUniversitycalledHOPE(HelpingOvercomeProblemsEffectively)andisintegratedaspartoftheaftercarepathway.

Theevaluationislookingatpatientreportedqualityoflife,changesinlifestylefactors,confidenceandmotivationtoselfmanage,patternsofhealthcareutilisation,andfeelingsofhopeandgratitude.Thesearebeingmeasuredimmediately,beforeandafterthecourse,andat6and12monthsafterthecourse.

Inadditionaskillstrainingprogrammeforprofessionalsinthepathwayisbeingtestedandevaluatedthroughpatientreportedexperienceofconsultationstyles.TheresultsofthisprogrammewillbeavailablebyMay2010.

TheresultsareexpectedfromNovember2010.

51 ThomasR.etal(2009)Lifeaftercancer–rehabilitationathomecanimprovewellbeingandsurvival.BritishJournalofHealthcare,5(1);10-12.AndseeThomas&Davies20074

52 NHSBirminghamEastandNorth,PanBirminghamCancerNetwork,HeartofEnglandNHSTrust,NationalCancerSurvivorshipInitiative,NCSITestcommunitysurvivorshipimprovementprojectongoing.MacmillanCancerSupport,‘LivingwithCancer’,Report2008

43


Example: Macmillan’s ‘New Perspectives’ programme

NewPerspectives–acourseforpeoplelivingwithcancerfacilitatedbypeoplelivingwithcancer–isasix-weekself-managementcoursespecificallydevelopedbyMacmillanCancerSupport.

ThecourseisacancerspecificversionoftheChronicDiseaseSelf-managementProgrammeoriginatingfromStanfordUniversityintheUnitedStates,whichtheExpertPatientsProgramme(EPP)53isbasedon.AnationalevaluationoftheEPPfoundthatsuchcoursesareausefuladditiontothecurrentservicesforthemanagementoflongtermconditions,andarelikelytobecosteffective.

TheNewPerspectivescourseaimstoimprovetheskillsandconfidenceofparticipantstomanagetheday-to-daychallengesfacedwhenlivingwithacancerdiagnosisthroughactivitiessuchasfacilitateddiscussionandproblem-solving.

Thecourse,whichisavailablethroughouttheUK,isfacilitatedbytwotrainerswhothemselveshaveexperiencedcancerwhichhelpstodevelopanatmosphereofsharedsupportandunderstanding.

Courseevaluationhasshownthatparticipantsparticularlyrespondtotheemphasisonpositivethinkingandactionplanning,withmanyreportingmanyimportantlifestylechangesfollowingattendance.Asoneparticipantremarked,‘The course has helped me to re-evaluate how to move forward with life and given me new perspectives of what is achievable’.

53 NationalPrimaryCareResearchandDevelopmentCentre,NationalEvaluationoftheExpertPatientsProgramme,ExecutiveSummary44,March2007;KeyFindings(ResearchintoExpertPatients–OutcomesinaRandomisedTrial)

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Example: Maggie’s Cancer Caring Centres ‘Where now?’ programme:

Maggie’sprogrammeofprofessional,emotionalandpsychologicalsupportcantransformthewaythatpeoplelivewithcancer.

“Wherenow?”isaseriesofsixworkshopswhichhasbeendevelopedtohelppeopleaffectedbycancermaketheadjustmentbetweencompletingtreatmentandmovingontofollowup.Theworkshopsgivetheopportunityforpeopletomakelifestylechanges,adjusttolivingwithuncertaintyandfearsofcancerrecurrenceandtakeafreshlookattheirprioritiesinwork,home-lifeandrelationships.

“Wherenow?”comprisesthefollowingtopics:

> Exercise– Usingexercisetocombatfatigue,buildconfidenceandbecomepartofeveryday

livingbeyondcancer> Healthyeating> Relaxationandstressmanagement

– Managingstressinfamilyandworklife> Emotionalwell-being

– Livingwithuncertaintyandthefearofcancerrecurrence– Lookingafreshatrelationshipsandwhatyouwantoutoflife

> Beingapartnerinyourlongtermmedicalmanagement– Communicatingwithyourmedicalteam– Shortandlongtermhealthrisksaftercancer– Followupcare– Geneticimplicationsofcancer

PeoplewhohaveparticipatedinMaggie’s“Wherenow?”programmehavereportedpositivechangesinhealthrelatedqualityoflifeandlifestylechange.

“Wow….I can’t believe I’ve actually done a sit up!…I’ve been so tired, no energy…” 55yroldwoman4monthsafterbreastcancertreatment

“The group understands that my life is not the same…I’m different…now I have to help my family see I’m different..that’s the hard bit”49yroldmanaftertreatmentforprostatecancer

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Example: Yorkshire Cancer Network Test Community

Thistestcommunityaimstodevelopaweb-basedinformationsystemtoallowbothpatients,andauthorisedclinicalorsocialservicesstaff,toaccessandsharethecoreinformationthatisrequiredtoefficientlyandeffectivelymeettheirhealthneeds.

Byusingaweb-basedelectronic-platform,patientswillbeabletoshareagreedlevelsofinformationwithhealthandsocialservicesprofessionalsastheyfeelappropriate.Aweb-basedsystemwillfacilitatearadicalchangeinhowsuchpatientswillbemanagedwithintheYorkshireCancerNetwork(YCN).

ThisITinitiativeisanessentialcomponentofawiderYCNprojectthataimstotransformthemanagementoflateeffectsofcancertreatmentforthosetreatedaschildrenandyoungadults.

ForthepatientthisITinitiativewillensuregreaterpatientempowermentvia:

> choiceastowheretheywishtohavetheirlateeffectsmanaged(communityortertiary)

> provisionofarapidaccessroutetotheirkey-workerwithinthetertiaryLateEffectsTeam

> accesstotheirowntreatmenthistoryandfutureplannedcare(CancerSurvivorCarePlan)

> greaterknowledgeprovidedviaacomprehensiverangeofsupportinginformation/sourcesofadvice

> ensuringcontrolandcertaintythroughe-mailalertstoensureplannedinterventions/monitoringisundertakenonschedule

> availabilityofinformationthatthepatientcanchoosetosharewithhealth,socialcareandeducationprofessionalsasthepatientfeelsappropriate

> peersupportviaasecureweb-basedforum.

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5.12 PilotingworkbeingundertakenfortheNCSIchildrenandyoungpeopleworkstreamincludestestingtheimpactofphysicalactivityforchildrenandyoungpeoplesurvivors.

5.13 TheNCSIchildrenandyoungpeopleworkstreamtestcommunitiesincludeworktopilotusingtechnologytoshareandprovideinformationtopatients,carersandpractitioners.Itisenvisagedthatmovingfromparentalcontrolofcaretoself-managementofcareispartoftheshiftthatallowsempowermentforyoungadults.Allowingchildrenandyoungadultsgreateraccessto,andsharingof,informationrelatedtotheircancertreatmentandlateeffectswillenableyoungpeopletohaveselfmanagedcareandtheconfidencetobeautonomous.

Example: NHS Cambridge Test Community

Testingwillidentifytheimpactofintroducinganexerciseprogrammeonthequalityoflifeandothermeasuresinchildrenandyoungpeoplesurvivors.

Itisenvisagedthatintroducingexerciseprogrammesaspartoftreatment(eitherduringoraftertreatmentfinishes)reduceschronicfatigue,increasestheabilitytodomoreactivity,reducesobesity,improvesconcentrationandimprovesotherphysiologicalmeasurements.

Astructuredexerciseprogrammeisofferedeitheratthebeginningorendoftreatment.Exercisewouldincludeeitherastructurednumberofexercises,whichcouldbeperformedathomeoratagym.ADVDisalsobeingproducedasameansofexerciseinstructionandadditionalsupport.

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49

6.Tailoredsupport

Case study

Sue,57,Tyne&Wear,diagnosedwithbreastcancerin2002

‘GoingbacktoworkaftertreatmentwastoughasIfelttiredconstantlyandmyjointsached.Itriedmanagingbycuttingbacktoathreedayweekbutthensufferedboutsofdepression.Bothmanagersandcolleaguesexpectcancersurvivorstobebackto‘normal’whentheyheartreatmentwas‘successful’butI’vestruggledforsixyears,I’vetriedtogettheOccupationalHealthteamtounderstandthatmyproblemsarebecauseIhadcancer,butI’vefailedtogetthemessageacross.I’vedecidedtocallitaday.’

Tailored support for patients in remission6.1 Forpatientswhoareinremissionfollowingcancertreatment,thefocusoffollowupcareiscurrentlyonmonitoringforsignsoffurtherdiseaseorrecurrence,ratherthanaddressingthewiderrangeofneedsthatpeoplemayhaveatthisstage.Aswehavedescribedearlierinthisdocument,despitebeingresourceintensivefortheNHS,thisapproachappearstoofferlittlebenefitformanypatients,especiallyasrecurrencesaremostfrequentlydetectedbypatientsbetweenclinicvisits.The

NationalCancerSurvivorshipInitiative(NCSI)visionforfuturesurvivorshipcareisthatitshouldnotbenecessaryforsurvivorstoattendanout-patientappointmentatclinicsimplytohaveasurveillancetestordered.Thiscouldandshouldbedonethroughautomatedcallandrecallprocesses(asinthecancerscreeningprogrammes)involvingbloodtestsandimagingwithoutroutinefollowupappointments.

6.2 In2007,NHSImprovementcompletedasurveyofperceptionsandpreferencesforfollowupcancercare.Around3000cliniciansandserviceusersreplied.Responsestothissurveysuggestthatcliniciansandserviceusersconsiderthatthekeyreasonsforfollowupare;monitoringforearlycomplicationsfollowingtreatment,detectingrecurrenceanddetectinglateeffectsoftreatment.54Thosesurveyedhadsomeexperienceintheuseofdifferentmodels,includingpatienttriggeredfollowup,nurseled,group,telephoneandpostalfollowup.Thosewhohadexperiencedtheseserviceswerepositiveaboutthembutthosewhohadnotexperiencedadifferentmodelexpressedapreferenceforhospitalbasedfollowup.Nurse-ledfollowupserviceshavebeenpositivelyevaluatedbybreastandprostatecancersurvivors.55

54 www.improvement.nhs.uk/cancer/

55 Faithful,S,Corner,J,Myer,L,Huddart,RandDeranaley,D(2001)Evaluationofnurse-ledcareformenundergoiningpelvicradiotherapy.BritishJournalofCancer85(12)1853-1864

http://www.improvement.nhs.uk/cancer/

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Example: Birmingham Children’s Hospital NHS Foundation Trust and University Hospital Birmingham NHS Foundation Trust Test Community

ThistestsiteisdevelopingariskstratifiedmodelofcareforthetailoredlongtermfollowupofchildhoodcancersurvivorsthroughacutesurveillanceforearlyrecurrenceatBirminghamChildren’sHospitaltoadultbasedlongtermfollowupservicesatSellyOakHospital.

Thethreemodelstobedevelopedare:

> Postal/telephonesurveyinconjunctionwiththeWestMidlandsRegionalChildren’sTumourRegistryforlowriskpatients

> Nurseledfollowupclinicswillberuninparallelwithmedicallongtermfollowupclinics,formediumriskpatients

> Consultantledfollowupclinics–developmentofcurrentpracticetoallowconsultant-ledfollowupforpatientspredictedtohavethegreatestneed.

Thismodelofcareisintendedtoprovide:

> accessforpatientstorobust,sustainableandreliablelevelsoffollowupwhichareappropriatetothepatients’needswitheaseoftransferofpatientsbetweenlevelsofcaredependinguponpatientneed

> aregularpostalfollowupquestionnairetoGPsofchildhoodcancersurvivorswhichprovidesaccurate,reliabledatawhichcontributestothepatients’clinicalcare

> continuityofcarefromcompletionoftherapythroughtoadultbasedservices> patient/parentinvolvementinthedevelopmentoftheirindividualcarepathway.

‘Our vision is that people with cancer will be enabled to remain in or return to work after a cancer diagnosis if they want to and if this is appropriate for them. People with cancer are routinely given the information, advice and support they need to do so as well as routinely offered financial information and advice.’

MaureenDowling,CancerNetworkLeadAlliedHealthProfessionalandChairoftheNCSIWorkandFinanceWorkStream

Staying at or returning to work

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6.Tailoredsupport

6.3 Ashifttowardstailoredsupportforpeopleaffectedbycancerincludesimprovedinformationandsupportforcancersurvivorsandemployerstoenablethosecancersurvivorswhowantto,togetbacktowork.TheNCSIworkandfinanceworkstreamhasdevelopedamodelofsupportforthoselivingwithcancerwhowantto,returnto,orremaininwork.Themodelproposesfourtiersofvocationalsupportforpeoplelivingwithcancer:

> Level1–InformationandSupportprovidedthroughelectronicandprintedmedia

> Level2–Onetoonesupportandsignpostingthroughtelephonehelplinesanddigitalmedia

> Level3–Self-managementprogrammesaccessedduringorfollowingtreatment

> Level4–SpecialistVocationalRehabilitationservice.

6.4 Themodelisunderpinnedwiththevaluesofdignity,empathy,respect,humanityandnormality.Theintentionisthatthemodelsupportsboththeindividualdiagnosedwithcancerandtheemployer.Thisvocationalrehabilitationmodelwillbepilotedduring2010.

Meeting the long term needs of children and young people

‘Our vision is that children and young people surviving cancer have consistent, holistic, seamless and appropriate care and information to enable each individual to lead fulfilling lives beyond their cancer treatment.’

FaithGibson.SeniorLecturer,GreatOrmondStreetHospitalandChairoftheNCSIChildrenandYoungPeopleWorkStream

6.5 ThechildrenandyoungpeopleworkstreamareworkingwithNHSImprovementtotestanumberofapproachestoaftercareforchildrenandyoungpeople.Thechildrenandyoungpeopletestcommunitiesarepilotingimprovedinformationexchangebetweenpatientsandparentsandhealthcareprofessionalsviasurvivorshipcareplans.Theworkincludespilotingariskstratifiedmethodologyoffollowupcareandplanningforongoingcareandpotentiallateeffects.Theintentionistomeettheholisticneedsofthisgroupofsurvivorsandreducethenumberofpatientswhohavethepotentialtobecome‘lost’tofollowup.

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6.6 Childrenandyoungpeoplesurvivingcancerhavearangeofneedsincludingeducation,employmentandpsychologicalsupport.Itisparticularlyimportantfortheoverallwellbeingandfuturelivesofthisgroupofsurvivorsthattheyareabletomaintaincontinuityatschoolandhavesupportforsuccessfulentryintotheirfirstemployment.AspartoftheNCSIchildrenandyoungpeopleworkstream,CLICSargentareundertakingareviewoftheexistingguidanceandpoliciesthatcurrentlysupporttheseareas.Outcomesfromthisworkwillhelptoinformfuturecareandprovisionforyoungcancersurvivors.AninitialreportwillbeavailableinMarch2010.

Tailored support for people with consequences of cancer treatment

‘Our vision is that consequences of cancer treatment are acknowledged and therefore described, measured, coded, enumerated and reported routinely by the NHS. Preventable consequences are avoided through universal access to the safest and most effective treatments for cancer. Where adverse consequences cannot be prevented, effective and accessible services are available for all patients in order to reduce functional impairment and to alleviate distress, whether physical or psychological. The nature and content of the services provided is matched to need using stratified assessment tools. There is a continuing research and development programme to improve our understanding of the consequences of cancer and its treatment, and this research programme is seamlessly integrated into mainstream research into the treatment of cancer.’

JaneMaher,ChiefMedicalOfficer,MacmillanandChairoftheNCSIConsequencesofTreatmentWorkStream

53

6.Tailoredsupport

Case study

G,31,SouthCoast,withasmallson,diagnosedwithcancerofthecervix.

Gwascuredbysurgeryandradiotherapybutshewasleftwithseverebowelproblems.Shewouldhavediarrhoeaupto12timesaday,wouldrepeatedlysoilherselfandherweightdroppedfrom11to7stone.Shehadsubacuteobstructivesymptomsevery6weeks.Gfounditimpossibletoworkregularly.Herdoctorslocallyrepeatedlysaidthatnothingcouldbedone.Aftersevenyears,GwasreferredtoaspecialistserviceinLondon.Threesimpleconditionswerediagnosedandappropriatetreatmentinstitutedafterasingleclinicvisit.Threeweekslaterbowelfunctionwasnormal.‘It’slikeamiracle’shesaid.‘Thankyouforgivingmemylifeback.’

6.7 TheNCSIhasidentifiedtheneedforashifttowardssupportingcancersurvivorsthroughpersonalisedinformationandspecialistsupporttoenablethemtoprepareforanddealwithconsequencesoftreatmentandtoensureearlyrecognitionofsignsandsymptomsoffurtherdisease.Thisshiftwillmeanthatpatientsknowwhatmighthappen,whattodoandwhomtocontact.

6.8 Implicitwithintheprincipleofsuccessfultreatmentofcancerisanacceptancethatthereisarealpotentialforsomedegreeofdamagetonormaltissues.Theconsequencesofcanceroritstreatmentcanbedefinedassymptomsand/orchangesinfunction–whetherphysicalorpsychological–whichdevelopfollowingtreatmentforcancer.Thisdefinitionembracesawidevarietyofproblems,thenatureofwhichwilldependbothupontheprimarysiteoftheoriginalcancerandthetreatmentsdeployed.Theseproblemsmightbepersistentordevelopmonthsoryearslater,afteraperiodofnormalhealth,andwhenneitherthepatientorhealthcareprofessionallinksthemtopreviouscancertreatment.Insomecases,theconsequencesofcanceroritstreatmentwilltaketheformofanewlongtermorchronicconditionoranexacerbationofanestablishedco-morbidity.

6.9 TheNCSIconsequencesoftreatmentworkstreamestimatethatbetweenonequarterandonefifthofpeopletreatedforcancer(upto500,000peopleintheUKasawhole)arecurrentlyexperiencingaconsequenceofcancerwhichhasanadverseimpactonthequalityoftheirlife.56Thisnumberisexpectedtoincreaseto600,000by2020.57

56 Basedonlevelsofneedidentifiedin:ArmesPJ,RichardsonA,CroweM,ColbourneL,MorganH,OakleyC,PalmerN,ReamE&YoungA.Patients’supportivecareneedsbeyondtheendoftreatment:aprospectiveandlongitudinalsurvey.JClinOncol27:6172-61792009

57 Basedonrateofincreaseinsurvivorshipprevalenceidentifiedin:CancerprevalenceintheUnitedKingdom:estimatesfor2008JMaddams,DBrewster,AGavin,JSteward,JElliott,MUtley&HMøllerBrJCancer2009101:541-547

54


6.10 Cancertreatmentsinyoungpeoplecanhavelastingeffectsonphysicalandmentalhealthleadingtoincreasedmorbidityandmortality.Theeffectscanhaveasignificantimpactonachievingautonomy.Consequencesoftreatmentforthisgroupincludeeffectsongrowthanddevelopment;vitalorganfunction;fertilityandreproduction;andsecondarytumours.67%ofchildhoodcancersurvivorsgoontodeveloponeormorelatemorbidities.Themorbidityburdenincreaseswithtimefromcompletionoftreatment.58

6.11 Thereislittleawarenessoftheconsequencesofcanceranditstreatmentamongthepublic,primaryhealthcareprofessionalsandcancersurvivors.AMacmillansurveyofsurvivorsfoundthat40%wereunawareofthelong-termconsequencesofcanceranditstreatmentandamongthosewhowereaware,somedidnotknowwhicheffectsmightaffectthempersonally.Apollof60GPswithaninterestincancerfoundthatthemajority(64%)hadnotreceivedanytrainingoreducationaboutthelong-termconsequencesofcanceranditstreatment.59

6.12 Awarenessamongsecondaryorspecialisthealthcareprofessionalsishigher.60Howeversecondarycaredoctors,specialistnursesandtherapeuticradiographersoftendonotfeelconfidenttodiscussconsequencesoftreatment

withoutinappropriatelyworryingtheirpatients.Cancerspecialistsmaynothavetheappropriateskillstodealwithchronictreatmentrelatedproblems,forexample,chronicbowelconditionsafterthetreatmentofpelviccancersorcardiacproblemsrelatedtochemotherapyforbreastcancer.

6.13 Manyconsequencesofcanceranditstreatmentcanbeembarrassingforthepatient,whichmeanstheymaynotraisetheissuewiththeirGPorspecialist.Thisisaparticularissueinrelationtofaecalandurinaryincontinenceandsexualandrelationshipissuesaftertreatmentofpelviccancers.

6.14 Althoughsupportedself-managementwillhaveanimportantroletoplayinhelpingpatientstodealwiththeadverseconsequencesoftreatmentforcancer,itwillnotbetheentiresolution.Theshifttowardssupportforconsequencesoftreatmentisfrompassivetoactiveandinvolvestakingstepstoassessmoreaccuratelythescaleandimpactoftheconsequencesoftreatment.Italsoinvolvesdevisinginterventionsthatpreventormitigatetheseeffects–reducingtheriskofthembecomingproblemsforthelongterm.

6.15 Wedonotyetknowwhatthelong-termconsequencesofmanycontemporarycancertreatmentsarelikely

58 OeffingerK,MartensA,SklarCChronicHealthConditionsinAdultSurvivorsofChildhoodCancerNEngJMed2006Vol355,1572–1582

59 CancerSurvivor:Health&WellBeingFollowupSurveyOct2008

60 CancerSurvivor:Health&WellBeingFollowupSurveyOct2008

55

6.Tailoredsupport

tobeandneedtodefinethenatureandextentoftheproblemsthatpatientsarelikelytoface.Thiswillbeacontinuingprocess–astreatmentsevolve,sodotheirconsequences.Case-findingandunderstandingeffectsarepre-requisitesforeffectivemanagementofconsequencesoftreatment.Itrequiresexpertisetomapsymptomstothetreatmentthatwasgiventoeachindividualandtolookforpatterns.Thisrequiresbetterunderstandingoftheshort,mediumandlong-termconsequencesofcancertreatmentinacuteandprimarycare–sothataftercareservicescananticipatefutureproblemsandprovideearlysupport,interventionandspecialistserviceswherenecessary.

6.16 Mostconsequencesofcancertreatmentdonothavetobedisabling,butafterappropriatespecialistassessmentanddiagnosis,canbemanagedeffectively,oftenbypatientsthemselves.However,aminoritywillhavemorecomplexproblemsrequiringspecialistmulti-disciplinarymanagement.Recentestimates,basedonliteratureanddiscussionwithseniorhealthprofessionalsandpatientssuggestthismayinvolve5-10%ofthosewithcommoncancertypesovera20-yearperiod.61

Level of need Estimated number of patients involved (percentages will vary according to cancer)

Level ehtotnikcabsseccakciuqhtiwdetroppus erac-fles1 – c70%dnanoitcetedylraeevorpmidedeen otdna nehwsystem fi

management.

yradnocesfoslevelwolgniriuqerfo tnemeriuqer– levelLevel 2 c25%sisongaid,tnemssessatsilaicepsretfaerac tupniand/or yramirp

.gninnalpand erac

xelpmoc gniriuqertnemtaertfosecneuqesnoc– ylhgihLevel 3 c5%lacinilCanetfo(rekrowyekdengissayb nacase tnemeganam

htiw .troppusyranilpicsid-itlumNurse )tsilaicepS

61 Lifeaftercancertreatment--aspectrumofchronicsurvivorshipconditionsDentonetal:ClinOncol(RCollRadiol).2007Dec;19(10):743-5.Epub2007Oct25

56


6.17 Weshouldexpectthatincreaseduseofregimensthatcombineradiotherapyandchemotherapy,whichareassociatedwithsignificantimprovementsinsurvival,willresultinanincreaseinthelateconsequencesoftreatment.

6.18 TheNCSIconsequencesoftreatmentworkstreamisworkingwiththeNationalCancerIntelligenceNetwork(NCIN)tounderstandprevalenceofconsequencesofcancertreatment.ItwillstartwiththeNCINclinicalreferencegroupsforbreastandprostatecancerexaminingtheprevalenceofcardiacandbonecomplicationsandsecondandsubsequentmalignancyaftertreatment.Thisworkwillbecompleteinlate2010.Thisworkcouldbeextendedtoincludeanalysisoffactorsthatpredictanincreasedprobabilityofdevelopinglateeffects.

6.19 TheRoyalCollegeofRadiologistsisalsoundertakingarepeatofanauditin2000 ofthelateconsequencesofpelvicradiotherapyandchemotherapyforcancerofthecervix.Theconsequencesoftreatmentworkstreamisconsideringhowtobuildonthisworktoidentifypatternsofhealthserviceresourceutilisationassociatedwithdifferentlevelsofconsequencesofcancertreatment.Theworkstreamisconsideringhowtoextendcurrentpilotingworkrelatedtothecreationofspecialistclinics,symptommeasurementandriskstratificationwiththisgroupofpatients.Thisworkwillimproveunderstandingandawarenessofconsequencesofcancerandtreatmentandcomplementtheworkofthe

NCSIresearchworkstreamtodevelopasystematicapproachtoriskstratificationofcancersurvivors.

6.20TheDepartmentofHealthandtheNCSIconsequencesoftreatmentworkstreamhavecommissionedtheBritishSocietyofGastroenterologistsandtheRoyalCollegeofPhysicianstoproducepracticeguidanceonthediagnosisandmanagementofbowelproblemsrelatedtoconsequencesofcancertreatment.ThisguidanceisexpectedtobeavailableinMarch2010.Thisworkcouldbeusedasamodelforapproachingotherproblemssuchasneurologicaldysfunction(includingcognitiveproblems),bladderproblems,endocrinologicaldisturbanceandpyshco-sexualproblems.

6.21TheNCSIconsequencesoftreatmentworkstreamisestablishingacommunityofclinicalleaderswithexpertiseintheconsequencesofcancertreatment.TwelvenursesandalliedhealthprofessionalshavebeenidentifiedbytheNCSItoworktogetherovera2-3yearperiodtodevelopaninfluentialprogrammeofresearchandservicedevelopment.Thecommunityaimstodevelopandimproveservicestoenableinformed,well-supportedpatients,flexible,responsiveservices;and,moreproductiveconversationsbetweenhealthcareprofessionalsandpatients.

6.22TheNCSIconsequencesoftreatmentworkstreamhighlightaproposedmodelforspecialistservicesforthosewithmoderateandsevereconsequencesof

57

6.Tailoredsupport

treatment(levelsone,twoandthreeidentifiedabove).

6.23Thismodelincorporatestheideaof‘localchampions’forspecialistclinics.Providingsupportandspecialistservicesforthosewithmoderateorsevereconsequencesoftreatmentisaparticularchallengeandtheconsequencesoftreatmentworkstreamhavereviewedmodelsofcareforthisgroupofsurvivors.TheseincludespecialistservicesforthemanagementofbowelconsequencesattheRoyalMarsdenHospitalandamodeldevelopedforpatientswithseverecomplexproblemsafterradiotherapyforbreastcancer–theRAGEmodel.

Tailored support for people with active and advanced disease

‘Our vision is that cancer survivors have a personalised assessment and care plan. Survivors have easy access to support and rehabilitation services. There are prompt and sensitive pathways back into the system for side-effects of treatment, recurrence or secondary cancer. The model of care for recurrent or secondary cancer delivers clinical and care standards comparable to that of primary treatment. End of Life Care decisions are made together by patients and professionals.’

RogerWilson,ChiefExecutive,SarcomaUKandChairoftheNCSIActiveandAdvancedDiseaseWorkStream

First tier

• Information• Triage• Referral to local champions

• MDT assessment and care planning and initial management

• Intensive therapy and specialist treatments

Secondtier

Third tier

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6.24 Somepeoplewilllivewithadvanced describethepatternsofadvanceddisease,cancerasalongtermillnessandhavea toidentifytheneedsofpatientswithactivenumberoftreatments.TheNCSIactiveand andadvanceddiseaseandtheservicesadvanceddiseaseworkstreamhasworked thatareneededtosupportthisgroupwithcancersurvivorsandcliniciansto ofpatients.Specialistpalliativecareand

Example: Specialist Support Services: Radiotherapy Action Group Exposure (RAGE) Intervention Pilot Programme

R.A.G.E.isagroupofwomenwhoarelivingwiththelong-termeffectsofradiotherapythatwasgiventotreatbreastcancer.

R.A.G.E.,MacmillanCancerSupportandtheNationalCancerActionTeamdesignedaprogrammeofinterventionaimedathelpingR.A.G.E.membersaccesstheservicesandsupporttheyneed.62

Theprogrammeistestinganumberofinterventionsforthisgroupincluding:

> initialidentificationthroughmembershipofanationalself-helpgroup

> matchingMDTmembershiptoneedsidentifiedthroughtelephonecontact

> invitingcancercentrestoassembleappropriateteamstoassesssmallnumbersofpatients

> educationandawareness-raising

> auditinghoweasyitisforcareplanstobeimplementedlocally

> auditingtheimpactofapatientheldbudget

240patientswereidentifiedandinvitedtocompleteselfreportquestionnaires.

126womenacceptedaninvitationtoattendamulti-disciplinaryassessment.

158womenreceivedgrantsandweresentafollow-upformtosolicitinformationofhowgrantswereactuallyspent.

AfinalreportwillbeavailableinJune2010.

62 ThisbuiltontherecommendationsmadebytheMaherCommittee,theHanleyandStaley(2006)report,aswellasconsultationswithR.A.G.E.members.

59

6.Tailoredsupport

endoflifecareservicesdonotgenerallyaddresstheneedsofpeoplelivingwithactivecancerwhoarenotthoughttobe‘dying’.

6.25 BreastCancerCare’sSecondaryBreastCancerTaskforcehasdonevaluableworktounderstandtheneedsofthosewithmetastatic(secondary)breastcancerdiagnosis.BreastCancerCarehavefoundthatthisgroupofsurvivorsoftenfeelisolatedandlackadequatecoordinationofcareandsupport.Inparticularincomparisontothecareandsupporttheyreceivedattheirprimarydiagnosis.63

6.26 TheNCSIhasidentifiedtheneedtodevelopnewmodelsofcareforpeoplewithactiveandadvanceddisease,whichincludetheinvolvementofamulti-disciplinaryteam.In2010theNCSIwillfocusondevelopingmodelsofcareforthisgroupofsurvivors.

6.27 TheNCSIactiveandadvanceddiseaseworkstreamhavecommissionedareviewoftheevidenceofthebenefitsofkeepingwellforthosewithactiveandadvanceddiseaseaswellasexaminingcurrentgoodpracticeinthisarea.

6.28 Somepatientswithactiveandadvanceddiseasewillgoontoneedpalliativeandendoflifecareservices.TheEndofLifeCareStrategy64,whichcentresonpersonalcareplanningincludingadvancecareplanning,isworkingtoaddressthisforeveryoneapproachingtheendoflife,includingcancersurvivors.In2010theactiveandadvancedworkstreamwilldevelopprinciplesforbestpracticeinthetransitiontoendoflifecare.

63 BreastCancerCare,SecondaryBreastCancerTaskforce,Improvingthecareofpeoplewithmetastaticbreastcancer,FinalReport,November2008.

64 EndofLifeCareStrategy,DepartmentofHealth,July2008.

61

7.Measuringoutcomesforsurvivors

7.1 TheNationalCancerSurvivorshipInitiative(NCSI)hasidentifiedaneedforanewemphasisonunderstandingandmonitoringtheconcernsandoutcomesforcancersurvivorsthroughtheroutineuseofPatientReportedOutcomeMeasures(PROMs)inaftercareservices.

7.2 Thismeasurementofconcernsandoutcomesisimportantto:

> identifyhowqualityoflifecanbeimprovedforindividualsandtohelpplancareforindividualpatients

> assessqualityofcareinindividualservices

> measureprogressonsurvivorshipcareacrossthecountry.

7.3 Thismeasurementcanbeachievedthroughpatientsrecordingcurrentproblemsandconcerns,asapromptformoredetaileddiscussionswithhealthcareprofessionals(asdescribedinchapter4).Itmayalsobeachievedthroughsendingquestionnairestopatientsatdefinedpoints(e.g.1,5and10yearsafterdiagnosis)toassesshealthrelatedqualityoflife:allowingforcomparisonsacrossthecountryandtodetectprogressonsurvivorshipovertime.MeasurementsmightalsobetakenbyintegratingPROMSmeasuresintobroaderpatientexperiencesurveyswherefeasibletodosowhichenableassessmentstobemadeaboutqualityofcare.

7.4 Thisisanewemphasisonmeasuringoutcomesforcancersurvivorsacrossthewholerangeofhealthandqualityoflifedomains–physical,psychological,socialandemotionalaswellasinrelationtoqualityofcare.

7.5 ArangeofquestionnaireshavebeendevelopedandarebeingusedasPROMswithcancersurvivors.In2010,theNCSIwilldofurtherworktotesttheroutineuseofPROMsinaftercaretotrackprogressinimprovingcareandsupportforcancersurvivors.

7.6 Todate,theNCSIhasidentifiedaselectionofPROMsquestionnairesthatareusedforunderstandingqualityoflifeissuesforcancersurvivors.Inaddition,theDepartmentofHealthhascommissionedthePatient-reportedOutcomeMeasurementGroupattheUniversityofOxfordtoreviewtheevidenceforPROMsforbreast,lung,colorectalandprostatecancers.Thisworkisexpectedtobecompletelaterin2010.

7.7 TheMedicalOutcomesStudy36-ItemShort-FormHealthSurvey(SF-36)65andtheEuroQoL(EQ-5D)66questionnairesarebeingusedforcomparisonofoutcomesforgroupsofpatientsandwithpatientswithotherdiseasetypes.

65 WareJE,SherbourneCD.TheMOS36-itemshortformhealthsurvey(SF-36).Conceptualframeworkanditemselection.MedCare1992;30:473-483.

66 EuroQolGroup.EuroQol-Anewfacilityforthemeasurementofhealth-relatedqualityoflife.HealthPolicy.1990;16:199-208.

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7.8 TheQualityofLifeinCancerSurvivors(QLACS)67andtheEuropeanOrganizationforResearchandTreatmentofCancerQuality-of-LifeQuestionnaire–C30(EORTCQLQ-C30)68questionnairesareusedforunderstandingoutcomesforindividuals.

7.9 Thevalueofusinga‘screening’measurepriortoprovidingpatientswithlongerandmoredetailedquestionnaireshasalsobeenconsidered,withtheSocialDifficultiesInventory69offeringpotentialforthis.

7.10 TheeaseofprovidingandanalysingdatafromPROMswillbecrucialtouptakeanduseincanceraftercareservices.TheNCSIconsiderthatanITbased,ratherthanapaperbased,systemismostlikelytobeeffective.

7.11 Thisshiftistowardsbettermeasurementofsurvivors’experienceofcare,includingthroughsurvivorshipquestionsbeingincludedintheNationalCancerPatientExperienceSurveyProgramme.TheCancerReformStrategycommitmenttodevelopandimplementaCancerPatientExperienceSurveyProgrammeprovidesanopportunitytoassessthequalityofsurvivorshipcare(aswellasassessingpatients’perceptionsofdiagnosisandprimarytreatment).ThefirstsurveyisduetotakeplaceinSpring2010,withresultsavailablebySummer2010.

67 AvisNE,SmithK,McGrawS,SmithRG,PetronisVM,CarverCS.Assessingqualityoflifeinadultcancersurvivors(QLACS).QualLifeRes2005;14(4):1007–1023.

68 AaronsonN.K.,AhmedzaiS.,BullingerM.etal(1987)TheEORTCcorequalityoflifequestionnaire:Interimresultsofaninternationalfieldstudy.In:OsobaD.ed.EffectofCanceronQualityofLife.BocaRaton,FL:CRCPress1991:185-203.

69 WrightEP,KielyM,Johnston,C,Smith,ABCull,A.andSelbyPJ.(2004)DevelopmentandevaluationofaninstrumenttoassesssocialdifficultiesinroutineoncologypracticeQualLifeRes(2005)14:373–386

63

7.Measuringoutcomesforsurvivors

Advantages and Disadvantages of two cancer specific PROMs for cancer survivors:

Measure Advantage Disadvantage

EORTCQLQ-C30

>

>

>

evidence based and shown to be effective in understanding concerns of survivors

demonstrated to be used by doctors

can be used with touch screen technology

originally designed for clinical >trials and so might not be responsive to the needs of cancer survivors

may not be sensitive enough to >show change in outcomes for survivors

> does not cover all aspects of survivorship experience – e.g. financial, social, family issues only mentioned briefly

QLACS >

>

>

survivor-specific as well as cancer-specific

measures both generic and cancer-specific quality of life, considering the survivor in the wider context of the patient experience

very broad – picking up a range of survivorship issues, including financial and family concerns

> may not be sensitive enough to show changes in outcomes

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8.Research

8.1 OneoftheaimsoftheNationalCancerSurvivorshipInitiative(NCSI)istoidentifywhatisknownandnotknownabouttheissuesthataffectpeoplelivingwithcancerandaboutcareandsupportforcancersurvivors.InJune2009,theNCSIresearchworkstreamcommissionedacomprehensivereviewofexistingliteratureandevidenceaboutcareandsupportforadultsfollowingcancertreatment.Theintentionofthereviewwastoidentifygapsinknowledgeaboutsurvivorshiptoinformafuture,long-termsurvivorshipresearchprogramme.

8.2 Thereviewincludedpublishedliteratureandunpublishedreportsandstudies,ongoingresearchandstudiesandcollectionsofdata.ThereviewwascompletedbytheNationalCancerResearchInstitute(NCRI)SupportiveandPalliative

CareResearchCollaboratives,COMPASSandCECo(theCancerExperiencesCollaborative).70Thereviewcoveredthepsychosocial,physicalandpracticalaspectsofsurvivorshipandinterventionsaimedatimprovingthehealthandwellbeingofcancersurvivors.

8.3 Theresearchworkstreamwentontocompleteaconsultationwithresearchers,cliniciansandpeopleaffectedbycancerontheirprioritiesforfutureresearch.

8.4 AreviewoftheevidenceaboutmodelsofcareforchildrenandyoungpeoplefollowingcancertreatmentisunderwayandinitialresultswillbeavailablebyApril2010.

8.5 TheNCSIresearchworkstreamiscurrentlygatheringinformationfromitsworkin2009toidentifyasetofresearch

70 ThesupportiveandpalliativecareresearchcollaborativesaresupportedbysixNCRIpartners,includingCancerResearchUK,theEconomicandSocialResearchCouncilandtheDepartmentofHealth.TheyareworkingtobringtogetherresearcherstoaddresstheaimsoftheNCRI’sReportonSupportiveandPalliativeCareintheUK(2004).

’Our vision is that there is a strategic programme of new research to answer the priority areas of uncertainty in cancer survivorship – with a strong emphasis on practical interventions to improve the experience, health and wellbeing of people living with cancer. This programme will include the development of tools for assessing the likelihood and significance of different events occurring in the experience of people living with cancer, enabling timely, relevant and effective support to be provided. A longer term vision is to achieve a national portfolio of research trials open to patients at all stages of the survivorship pathway (not just those undergoing treatment). The trials would include a particular focus on practical support interventions for cancer survivors.’

JohnNeate,ChiefExecutive,TheProstateCancerCharityandChairoftheNCSIResearchWorkStream

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prioritiestobepublishedatthebeginningof2010.Theseresearchprioritieswillbedevelopedintoaprogrammeofresearchoncancersurvivorshipthatwillbetakenforwardintwoways,bothinclosecollaborationwiththeNationalCancerResearchInstitute(NCRI).

8.6 Thefirstwillbetotargetandmaximisetheusebyresearchersofexistingrelevantsourcesofresearchfunding,includingtheNationalInstituteforHealthResearch(NIHR)andMedicalResearchCouncil.

8.7 Thesecondwillbetodevelopanew,jointresearchfundingbudgetwithcontributionsfromorganisationswithaparticularinterestinthearea.

8.8 Therearefivebroadareasofworkthatarebeingbroughttogethertocreatetheresearchpriorityareas:

> themappingexercisecarriedouttoidentifykeyissuesfacedbycancersurvivors

> thecomprehensivereviewoftheevidencebaseforcancersurvivorshipundertakenbytheNCRISupportiveandPalliativeCareResearchCollaboratives

> theconsultationexercisewithstakeholdersontheirviewsofthemostimportantareasforfutureresearch

> outputfromtheNCRIRapidReviewofResearchintoSurvivorshipafterCancerandEndofLifeCare,undertakentosetaclearfuturedirection,fromtheperspectiveoforganisationswhofundresearchintheseareas.Thereviewhasidentifiedanumberofactionswhichwillbetakenforwardduring2010,includingthepromulgationofexistingfundingsources,targetednewfundingstreams,andpromotionofalreadyfundedstudiestoincreaseuptakeinthecancernetworks

> researchneedsandkeyquestionsidentifiedbythesixotherNCSIworkstreams,whichwillbetestedagainstthefindingsfromtheevidencereviewtoclarifywhichquestionshavealreadybeenansweredandwhichwillneedtobemetthroughnewresearch.

8.9 Suggestedcriteriaarebeingdevelopedtohelpdeterminetheresearchpriorities.Akeyrequirementisthatnewresearchshouldmakeasignificantdifferencetothelivesofpeoplelivingwithcancerasrapidlyaspossible.

8.10 Researchalreadyunderwaythatisrelevanttothefutureresearchagenda–includingaprojecttofurtherunderstandandmodelcancerprevalenceandworkonriskstratification–willallbetakenintoaccountindrawingtogetherthepriorityareasanddevelopingthenewresearchprogramme.

67

8.Research

8.11 Thefullreportoftheresearchworkstreamisexpectedtobepublishedlaterin2010andisdesignedtoprovideapracticaltoolforresearchers,researchfunders,healthserviceprovidersandcommissioners,cancersurvivorsandpolicymakersindrivingimprovementsinsurvivorshipresearchandthepracticalexperiencesofcancersurvivors.

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9.Nextsteps

9.1 ThischaptersetsoutsomeofthenextstepsfortheNationalCancerSurvivorshipInitiative(NCSI).TheseincludehowtheNCSIwillfocusonpilotingmodelsofcaretoachievethevisionforimprovedcareandsupport,developingthelonger-termresearchprogrammeforsurvivorshipandsupportingthehealthandcareworkforcetoimprovecareandsupportforcancersurvivors.

9.2 During2010,theNCSIwillfocusongatheringevidenceofthequalityandproductivitybenefitsofevaluatedmodelsofsurvivorshipcareandsupport.

Test communities9.3 NHSImprovementissupportingtheNCSIthroughpilotingnewapproachestocareandsupportforcancersurvivors.Therearenow38testcommunities;28pilotingapproachestocareandsupportforadultsand10communitiespilotingapproachesforchildrenandyoungpeople.Theaimsofthetestingworkareto:

> developandevaluateeffectivepathwayswhichprovidemeasurableimprovementsinthehealth,wellbeingandexperienceofcareofcancersurvivors

> buildprinciplesforposttreatmentcareandsupportthatwillinformcommissioning,workforceandprovidersofcare.

9.4 Thereare16adulttestcommunitieswhoarepilotingnewapproachesto

carebasedoneffectivemanagementofthepatientpathway.Thecommunitiesarelookingatthecareandsupportforpatientswitharangeofcancers.Allofthesecommunitiesarenowinthetestingphaseandthiswillcontinuethroughtolatesummer2010.

9.5 ThePickerInstituteexperienceofcaresurveyprovidesabaselineshowingwhereexperienceofcarecanbeimprovedinthese16adulttestcommunities.Asecondsurveywillbeconductedduringthesummerof2010toprovideevidenceaboutthenationalandlocalimpactofthetestingwork.

9.6 TwelvetestcommunitieshavealsobeencommissionedtopilottheNCSIassessmentandcareplanningframeworkandsummarytreatmentrecord.Thesewillbetestedwithpatientswhohavelung,colorectal,headandneckcancerormyeloma.Thetestcommunitieswillpilottheassessmentandcareplanningframeworkatdifferenttriggerpointsinthesurvivorshippathway.ThispilotingworkwillgetunderwayinJanuary2010andwillbecompletedinSummer2010.Theimpactonqualityoflifeforcancersurvivorsinthesetestcommunitieswillbeevaluatedusingbothqualitativeandquantitativemethods.

9.7 Thereare10testcommunitiespilotingarangeofmodelsofcareandsupportforchildrenandyoungpeople,theseinclude;assessmentandcareplanning,modelsofcareforthetransition

70


toadultservicesforyoungpeople,usingITaspartofsupportedself-managementforaftercare,nurseledfollowupclinicsandmaintainingcontactwithlongtermsurvivors.

9.8 ThelocationofalloftheNCSItestcommunitiescanbeseenbelow.

9.9 During2010,NHSImprovementwillpulltogetherlearningfromthetestingworkaroundthecountrytoinformprinciplesforcommissioningnewmodelsofcareandsupport.

Workforce9.10 TheNCSIhasreviewedtheemergingimplicationsforthehealthandcareworkforceoftheshiftsthatareneededtoimprovecareandsupportforcancersurvivors.Keythemesare:

71

9.Nextsteps

> Thecurrentcancerworkforceneedstoadapttothechangingemphasisofcareandsupportandtheroleofakeyworkerneedstobecomeembeddedintopractice

> Cancerpatientsareincreasinglysupportedinthecommunity.Withmoreemphasisonaftercare,ongoingsupportandthemanagementoftheconsequencesoftreatment,primarycarewillneedtoplayagreaterpartinthecontinuingcareofpeoplewithcancer.Therefore,keyprimarycarestaff(particularlyGPs,practicenurses,districtnurses,specialistnursesandalliedhealthprofessionals)willberequiredtodevelopexistingandnewskills

> Iftheholisticneedsofpeoplewithcanceraretobeaddressedthensocialcareskillsandcompetenciesmustbeconsideredacrosstheworkforce

> Thereisaneedtodeveloptheroleofthevolunteerworkforcetoco-delivercareandsupport

> Theincidenceofco-morbiditiesisgoingtoincreaseandsotheworkforcewillneedtobeawareofthepossibleinteractionsofconditions

> Newroles,suchascasemanagersandcancersupporters,needtobeidentifiedandmodelsdefined

> Needtodevelopskillsinassessmentandmanagingconsequencesofcancertreatmentinthespecialistcancer

workforcetosupportthosewithcomplexneeds

> Needtodevelopskillsandwaysofworkingtocareforpatientswithadvancedcancer

> Workingpatternstobeorganisedtofacilitatetailoredfollowupandrapidaccesstospecialistserviceswhenneeded.

9.11 TheNCSIhasalsostartedtoidentifythegenericskillsrequiredacrosstheworkforce,theseinclude:

> Holistic needs assessment skills–toworkinpartnershiptofacilitateapatient-ledassessmentonanongoingbasisontheemotional,financial,physical,social,information,spiritual,psychosexualandpracticalneedsthatpeoplelivingwithcancerfaceutilisingtheskillofnarrativeassessmentandenablingpatientcompletedscreeningtools

> Navigation skills–toidentifyandunderstandindividualneed,enablecarethatispersonalised,sign-posttootherservices(includingnon-health)andenablepeopletoaccess,identify,appraiseandinterpretinformationthatallowsthemtodeterminetheirfuture

> Coordination skills–toactasakeyworkerandcoordinatethe‘virtual’multi-disciplinaryteamthatareinvolvedinsupportingtheaftercarepathway,asthebreadthoftheteamsupporting

72


peopleislikelytoincreaseinthefutureandbeacrosstraditionalserviceboundaries

> Risk stratification skills–toensurethatthereisknowledgeofthelikelyconsequencesoftreatment,thatcareplanningispersonalisedandthatresourcesareappropriatelydirected.Includingassessingtherisktovulnerablepeoplewhoareopentofinancialandotherabuse

> Skills to enable self-management:

– Workinginpartnershipwiththepatienttosupporthealthandwell-being

– Facilitativeskills–includingeffectivecommunication,goalsetting,motivationalinterviewing,coachingandbehaviourchangetechniques

– Promotionofhealthandhealthylifestyles

– Enableandencourageself-assessmentonanongoingbasis,includingrecognitionofconsequencesoftreatment

– Enablerecognitionofthesignsofrecurrenceandtheneedforrapidre-entryintoservicesandmechanismsforre-entry

– Outcome measurementskills–tocollectandrecordtheexperienceofcareandalsoevidencetheefficacyofcare

– Telecare/telehealth skills– increasinguseoftelephonecareande-medicinemanagementforspecialistfollowupandaftercareiscurrentlyburgeoning,withouteffectiveworkforcedevelopment.Onlinesupportandassistivetechnologiesarealsorising

– IT skills–willunderpinalltheskillsidentifiedabove.

9.12 Otherspecificskillsinclude:

> Skillsandknowledgetounderstandandsupportthemanagementoftheconsequencesofcancertreatment

> Highlydevelopedcommunicationsskills,bothinbreakingbadnewsandexploringpartnershipworking

> Psychologicalandemotionalsupport–thiswillincludeassessmentandsupportwithinthelevelofcompetenceforeachindividualclinicianandtheknowledgeofwhenandhowtoreferontospecialistsupportservices

> Specialistknowledgee.g.consequencesofcancer,understandingtheinterrelatedeffectsofco-morbidities;financialandpracticalsupport;employmentrightsorpractices;benefits;psychosexualandfertility

> Interventionalmanagementthroughspecialisttraining,psychosexualcounsellors,physiotherapistsandclinicalnursespecialists

73

9.Nextsteps

> Vocationalrehabilitationincludingoccupationalhealthadviceandtherapy

> Supportpeopletobroker,employandmanagecaregiversusingmoneyfrompersonalisedbudgets.

Implications for workforce development9.13 Thereisanurgentneedtoprepareanddevelopboththecurrentandthefuturecancerworkforcewiththeskillsidentified,inparticular,theskillstosupportpatientsinthetransitiontobecomingapartnerincare.Thegeneralistworkforcewillalsoneedtobeenabledtodevelopsomeoftheskillsoutlined,inordertoprovidecontinuingcareforpeoplelivingwithandbeyondcancerineverycaresetting.

9.14 Below,theworkforceisdividedintothreedistinctgroupsinorderforworkforce

developmenttobefocused,withtheprioritybeingGroupAandB.71‘Staff’isusedinthebroadestcontexttomeannurses,doctors,alliedhealthprofessionals,supportworkers,informationstaffandthesocialcareworkforce.

The way forward9.15 Therearealreadyinexistenceaplethoraofsourcesofsupportingwork,forexample,pre-existingcompetenceframeworks,learningmaterialsfromawiderangeoforganisations/Universitiesandbodiesofevidencewhichlistexistingandrelevantcompetencies.TheNCSIwillcommissionworktocross-referencealltheexistingsourcesthatarerelevantagainstthethemesandskillsthathavebeenidentifiedanddevelopnewcompetenciesiftherearegaps.Thiswillincludeanalysisofthecompetenciesforthoseprovidingmanagementforlongtermconsequences

Group Definition Minimum Skill and Knowledge

Group krow sucof,ffats esohwA: tsilaicepS .gniniarthguorht tsilaicepstsehgiH ,sleveldna dnoyebevil htiwelpoep otis gnilbane competenciesnommoc erocedulcnioT lla

cancer

yltneuqerf laedffats ohwGroup B: Generic ylppapoleved rodelbane ototdeeN eba gnolevil htiwelpoep otwith gnilbane ot ehtdna egdelwonkgnitsixe slliks

term noitidnoc eriuqer.seicnetepmoc yaMselpicnirp dnaspecificsni recnaclanoitidda gniniart

secivres ni rehtoffatS gnikrowGroup C: selpicnirp dnani ehtcisabdooG gnidnuorghtiw yltneuqerfni devlovniwho era egdelwonk fo;seicnetepmoc edisgnola

mret-gnol htiw aot evilenabling elpoep rotrepxe ecivdaot keesdnaerehw wohcondition norefer

71 Adaptedfromthe‘CommonCoreCompetenciesandPrinciplesforhealthandsocialcareworkersworkingwithadultsattheendoflife,June2009)

74


oftreatment–toidentifyadditionaltrainingneeds.Someofthekeysourcesalreadyidentifiedarehighlightedbelow:

> SkillsforHealth–www.skillsforhealth.org.ukworkingwithSkillsforCare–www.skillsforcare.org.ukhaveproduced‘CommonCorePrinciplestoSupportSelfCare’(2008)aspartoftheworkonLongTermConditions

> BreastCancerCarehavedevelopedasetofcorecompetenciesforkeyworkerscaringforsecondary(metastatic)breastcancerpatients‘GuideforCommissioners:meetingthenursingneedsofmetastaticbreastcancerpatients’BreastCancerCare,November2008www.breastcancercare.org.uk

> eLearningforHealthcareProjects–www.e-lfh.org.uk–elearningforendoflifecarearoundcommunicationskills,advancecareplanning,careplanningandassessment,andsymptommanagementarebeingdevelopedaswellaselearningtosupportLongtermNeurologicalConditionslearningfornon-specialiststaff

> SkillsforHealthhavealsodevelopedcompetenciesrelatedtoLongTermConditionsCaseManagementandaspartoftheIntegratedCancerCareprogrammecompetencieswerealsoidentifiedforasupportingCareTrackerRole

> LongTermConditions‘WorkforceDevelopmentResourcePack’www.healthcareworkforce.nhs.uk

> NationalDiabetesSupportTeam,PartnersinCare:Aguidetoimplementingacareplanningapproachtodiabetescare.

9.16 Skillstoenablepartnershipworkingandself-managementareakeypriorityanddevelopmentsfocusingontheseareasmaybeabletodrawonandbeincorporatedintoexistingwork.TrainingsuchastheAdvancedCommunicationsSkillsTrainingforadultswithcanceralreadyexistsandwillbeimportanttothedeliveryofthelearningportfoliorequired.

9.17 Localcommissionersandservicesareencouragedtoundertakeanauditoftheirworkforceskillstomeetthesurvivorshipagendaandidentifygapsinservicesandroles(newrolesorservicesmayberequiredorexistingrolesandservicesredesigned).Foradultsurvivorsofchildhoodcancer,workforceguidanceisprovidedbytheChildrenandYoungPeopleImprovingOutcomesGuidance.72TheNCSIconsequencesoftreatmentworkstreamprojectonmappingtrainingneedsinrelationtolongtermconsequencesoftreatmentwillfeedintothismapping.UsingthesourcesidentifiedbytheNCSI,localcommissionersandserviceswillthenbeabletodetermineworkforcedevelopmentplans.TheNationalTraining

72 EvidenceonCancerServices:ImprovingOutcomesinChildrenandYoungPeoplewithCancerNICE,2005ISBN1846290678

http://www.e-lfh.org.uk/

www.healthcareworkforce.nhs.uk

http://www.breastcancercare.org.uk

http://www.e-lfh.org.uk

www.skillsforhealth.org.uk

www.skillsforhealth.org.uk

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9.Nextsteps

NeedsAnalysisTemplate,currentlybeingdevelopedinrelationtotheEndofLifeCareCommunicationSkillspilots,couldaidlocalplanningifpositivelytestedandcouldsupportsurvivorshipworkforcedevelopment.

Next steps for 20109.18 During2010,theNCSIwill:

> identifyaneffectivemodelforthekeyworkerfunctionthattranscendsthecarepathway

> teaseoutanddefinethecurrentlyidentifiednewfunctionsofthecase-managerandcancersupporter

> commissionworktocross-referencealltheexistingcompetenciesthatarerelevantagainstthethemesandskillsthathavebeenidentifiedanddevelopnewcompetenciesiftherearegaps

> developaNationalTrainingNeedsAnalysistemplate,toidentifyexistingcapacityandscopefuturerequirements,challengesandpotentialchangesinworkforce

> influenceeducationtobemorefocusedonassessment,communicationandtheacceptanceofcancerasachronicillness

> developtumourandtreatmentspecificworkbasedpackagesonlateeffectstobefreelyaccessibleacrossdisciplinestoraiseknowledgeandawareness.

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About the National Cancer Survivorship Initiative1 TheNationalCancerSurvivorshipInitiative(NCSI)wasannouncedintheCancerReformStrategy73andwasformallylaunchedinSeptember2008.TheaimoftheNCSIis,by2012,tohavetakenthenecessarystepstoensurethatsurvivorsgetthecareandsupporttheyneedtoleadashealthyandactivealifeaspossible,foraslongaspossible.TheNCSIisaledbytheDepartmentofHealthandMacmillanCancerSupportandisco-chairedbytheNationalCancerDirector,ProfessorSirMikeRichards,andtheChiefExecutiveofMacmillanCancerSupport,CiaránDevane.

2 SevenNCSIworkstreamswereestablished,madeupofcancersurvivors,carersofsurvivors,representativesfromcancercharities,healthandsocialcarestaffandresearchers.74Theworkstreamswereaskedtoassistthedevelopmentofimprovedmodelsofcareandsupportforthoselivingwithandbeyondcancer.Threeofthesevenworkstreamsdealtspecificallywithstepsinthesurvivorshippathway.

Thesewereassessmentandcareplanning,consequencesofcancerandtreatmentandactiveandadvanceddisease.Afurtherthreeworkstreamswerecrosscutting,coveringthewholesurvivorshippathwayandaregeneric(i.e.notconfinedtoaspecifictumourtypeoragegroup).Thesewereworkandfinance,self-managementandresearch.Theworkstreamonsurvivorsofchildhoodandyoungpeoples’canceralsocoversthewholesurvivorshippathway,butforaparticulargroup.Thisworkstreamisfocusingontheholisticneedsofchildrenandyoungpeoplelivingwithandbeyondcancer.Eachworkstreamwasaskedtoconsiderissuesrelatingtopatientinformation,commissioningandworkforce.

3 NHSImprovementaresupportingthedeliveryoftheNCSIthroughpilotingmodelsofimprovedcareandsupportforadultandchildrenandyoungpeoplesurvivors.Therearecurrentlytenchildrenandyoungpeopletestcommunitiesand28adulttestcommunities.

Annex

73 CancerReformStrategy,DepartmentofHealth,3December2007

74 MoreinformationabouttheNCSIworkstreams,includingthecontactdetailsfortheworkstreamchairsandsupportsisavailableatwww.ncsi.org.uk

www.ncsi.org.uk

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4 TheNCSIiscommittedtodeliveringthefollowingoutputs:

> adocumentdescribingthevisionforthecareandsupportofpeoplelivingwithorbeyondcancer

> principlesforeffectivemodelsofcareandsupport

> acceptanceof‘survivorship’asapriorityforpeoplewithcancer

> beginningthetranslationofthevisionintoactionatalocallevel

> acommunityofinterestedpeoplewhowillcontinuetoleadthisagenda

> guidanceforcommissionersonnewmodelsofcareandsupportforcancersurvivors

> developmentofspecialistservicesforthosesufferingfromthelateeffectsofcancertreatment

> guidanceonworkforcecapacitydevelopmentandtrainingneedsanalysis

> anewlongertermresearchprogrammedesignedtoanswerpriorityquestionsonsurvivorship.

Annex

Picture credit: John Birdsall/John Birdsall/Press Association Images

Barbara Laws/John Birdsall/Press Association Images

Bananastock

Fancy/Alamy

Corbis Super RF Images/ Alamy

© Crown copyright 2010 299671 1p 500 January 2010 (CWP) Produced by COI for the Department of Health

If you require further copies of this title visit www.orderline.dh.gov.uk and quote: 299671/National Cancer Survivorship Initiative – Vision

Tel: 0300 123 1002 Fax: 01623 724 524 Minicom: 0300 123 1003 (8am to 6pm, Monday to Friday) www.dh.gov.uk/publications


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