macmillan national programme lead treatment and...
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Dany BellMacmillan National ProgrammeLead Treatment and Recovery
Acrylic effect paintedpanels
Implementing RecoveryPackage and StratifiedPathways:
A case Study ofimplementing theRecovery Package atNorth Bristol NHS Trust
Where did westart?
The impact of cancer and treatment
Patient ReportedOutcome Measures(PROMS) give insight to:
• the quality of life forthose living with andbeyond cancer from theirexperiences and point ofview
• the impact of cancerand treatments on abilityto lead meaningful lives.
What did people tell us?
• 1 year post diagnosis nearly half feared recurrence andalmost a third were afraid of dying.
• 38% of prostate cancer survivors reported urinaryleakage and 58% reported impotence.
• 1 in 5 colorectal survivors had difficulty in bowel control.
• QOL is closely associated with disease status andpresence of other long term conditions.
• Almost a third reported doing no physical activity andaround a fifth did the weekly recommended CMOphysical activity i.e. 30 mins x 5.
• Increased physical activity associated with better QOL.
Consequences of treatment
Hundreds ofpeople
Severe, complex late effects
Tens ofthousands
Consequences ranging frommild to severe
e.g. Bowel, urinary and sexualproblems
Hundreds ofthousands
Increased risk of futureproblems
e.g. CVD & osteoporosis
Matching services to the numbers of risk
Aligning with the NHS Mandate inEngland
What did we do?
Implemented self management education andsupport programme:
Living Well days 4-6 months post treatmentLiving Well course 9 months post treatmentPost treatment exercise programmeDietetic support
Implemented stratified follow-upTeams stratified patients to a red, amber or greenpathway
Developed a care management systemTo undertake remote surveillance and reduce followup
Pilot site for electronic Health NeedsAssessment
Then What?
•Asked our Users•Talked to commissioners•Scoped what was happening•Identified our champions•Formed a steering group•Put on Trust Board and Cancer Board workprogrammes
Breast
400 new cases/yearNovember 2010- Stopped routine surgical follow-upNurse Led:
‘Look After Yourself’ event at 4-6 monthsLiving Well Course (SMP) at course 9 monthsHNA and care plan by CNSOpen access appointmentsMammogram surveillance
Breast Team:
•Very experienced CNS and manager
•Cohesive team
•Had already implemented redesign
•Follow up already reduced and predominantlynurse led
Colorectal
350 new cases/yearDecember 2010 surgical follow upreviewed:
6 week post op review by CNSLiving Well event at 4-6 monthsLiving Well course at 9 months2 years stable disease moved to green pathwayCEA, CT, Colonoscopy remote surveillance
Colorectal Team;
•Dynamic
•All routine follow-up nurse led except for 1consultant!
•Requesting diagnostics
•However, no support group and verysceptical!
Prostate
500 new cases/yearDecember 2010 surgical follow upreviewed:
2 week post op review by CNSHNA and care plan at CNS 6/52 OPALiving Well event 4-6 monthsLiving Well course 9 months2 years stable disease moved to green pathwaywith PSA remote surveillanceDischarging from lifetime and 5 year follow-up withopen access
Prostate Team:
•Dysfunctional appeared over stretched withworkload, failing targets
•Reconfiguration across city
•New consultant experienced with remotesurveillance
•1 out of the 4 CNS’s enthusiastic
•Directorate manager supportive
% patients moved to analternative pathway (amber orgreen)
Colorectal 95%Prostate 60%Breast 98%
Progress after 1 year:
• All 9 cancer MDT teams providing Living Well events withinformation and practical advice to enable supported selfmanagement with increased patient participation
• Living Well self management course for Breast piloted
• Routine follow-up for breast for newly diagnosed ceased
• Living Well course for Prostate developed
• Telephone follow up replacing face to face
• Developed Red/Amber/Green pathways with clinicalteams
• Breast Team piloted needs assessment
Progress after 2 years:
• Successful implementation of stratified follow-up andremote monitoring for patient follow-up in breast,colorectal & prostate
• Telephone and remote surveillance clinics commissioned
• Development of electronic tracking system for remotesurveillance
• Programme of training undertaken for CNS’s
• Physical activity programme piloted
• Colorectal, Prostate, Upper GI, using paper based HNA
• All Patient information reviewed
• Won Trust Excellence award for best service improvement
Progress after 3 years:
• Programme of training for lay tutors with active userinvolvement in Living Well programmes
• Living Well Self management course for colorectaldeveloped
• eHNA pilot site in breast, prostate, colorectal
• Breast team starting to use electronic treatment summaryin Somerset Cancer Register
• Whole health community bid put in for 1:1 pilots
• Won best adult poster at end of NCSI programme
Progress year 4
• CBT training offered to all staff involved in cancer careimproving confidence
• Extension of Macmillan electronic health needsassessment (eHNA) to all tumour sites
• Exercise and Nutrition outpatient clinics. Partnershipworking with local leisure centres and physiotherapydepartment
• Trial of new roles to support patients living with andbeyond cancer - Macmillan 1:1 project (Bristol city widecollaborative partnership)
• Shifting to the community
North Bristol’s Recovery PackageModel
Living Wellevents
MacmillanOne to One
Nutrition clinicExercise
programme
RemoteMonitoring
E-HNA
SelfManagementprogrammes
NBT RecoveryPackage
What helped?
•Trust Board support and an executive sponsor
•Dedicated nursing lead for survivorship
•Good admin support – dedicated time
•Support from Macmillan – financial and practical
•Training for staff in CBT (level II psychology)
•Engagement with and involvement of users, AHP’s etc
•Funding for venues and catering
•Use of champions to motivate others
•Positive patient feedback
•Engagement of medical colleagues
Patient Feedback
“The Living well dayhas given me moreconfidence to dealwith day to daychallenges thatarise”
“Sharing the overallexperience andfeelings…..listening to othersand how they havecoped gave mecomfort”
“So happy to havebeen able to attend.I did feel that voidafter my excellentcare but now I havehad help again”
“it was not until itwas all written downdid I realise the onlyperson who could
make it happen wasme. It was clearlythere in black and
white”
“Really good tohear that my
feelings are allnormal and myexperiences are
shared by others”
Vision
Collaborative culture with empowered and informedpatients taking active roles in their recovery
Individual HNA from the beginning of the pathway drivingpatient centred care
Implementation of the treatment summary across all tumoursites
Patient self management with open timely access tospecialist support when required
Seamless care between specialist and communityproviders
Transparent evaluation and reporting of services usingstandardised measures of outcome and patient experiencethat reflect an exceptional level of care
2015 Vision
Established evidence based new cost effective pathwayssupporting long term recovery and health and wellbeing ofpatients affected by Cancer
An established survivorship structure from collaborationbetween NBT, community providers, commissioners,users, Macmillan and other third sector organisations
A new collaborative culture in which empowered andinformed patients take more active roles in their recovery
Macmillan funded Wellbeing Centre co-ordinating allLiving Well activities
Individual HNA from the beginning of the pathway drivingpatient centred care
What’s happening next?
Pan-Avon approach to sustainable commissioning
Improving communication and integration of servicesacross secondary and primary care
Implementation of the treatment summary across all tumoursites
Collaborative cross-city working with UHBristol and PennyBrohn Cancer Centre (joint programmes)
Continued redesign of patient pathways to improveexperience and efficiency
Key survivorship messages
• The Recovery Package is key to good care andenables good communication across boundaries.
• A shift in professional culture is essential toenable supported self management.
• Many people can self manage their health withsupport, may need rapid access to professionals.
• Significant need arising from consequences oftreatment can be prevented or treated.
• New models of cancer aftercare can improvequality and reduce cost.
