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The English Cancer Survivorship Initiative: A shared model of care Jane Maher NHS Improvement Lead (Cancer) Joint CMO Macmillan Cancer Support Chair NCSI Consequences of Treatment 1. Prevalence 2. Unmet needs 3. Vision The new, simplified NHS 1. Avoid where possible 2. Acknowledge, measure, code and report routinely 3. Services to reduce distress and functional impairment http://www.macmillan.org.uk/Documents/AboutUs/Research/Researchandevalu ationreports/Throwinglightontheconsequencesofcanceranditstreatment.pdf Some of our achievement in 2008 Diagnosis & Treatment Recovery Early monitoring Later Progressive illness End of life care monitoring Gaps Breast cancer care pathway – estimating the number of women, 2008* Colorectal cancer care pathway – estimating the number of people, 2008* Lung cancer care pathway – estimating the number of people, 2008* Every cancer pathway is different but it is helpful to consider three groupings The three groups are based on typical survival times: Group 1: long term survival after an "acute illness" Group 2: "incurable but treatable" - "chronic illness" Group 3: limited treatment options, short survival 10 Long term conditions and multimorbidities will become the norm . http://www.macmillan.org.uk/Documents/AboutUs/Research/Researchandevaluationreports/Routesfrom-diagnosis-report.pdf The impact of cancer and its treatment 802 responders with colorectal cancer (64.3% response rate) 1, 2, 3 and 5 years post diagnosis • difficulty controlling bowels in 19% • no less prevalent after 5 years - this item affected EQ5D Estimating specific consequences of cancer or its treatment for colorectal cancer survivors, 2010, UK Time since diagnosis 1yr 2yrs 5yrs 10yrs 19% experience difficulty controlling => ~ 40,000 bowels Source: Estimates using prevalence data and patient reported outcome measures, Maddams et al; Glaser et al. http://www.ncsi.org.uk/wp-content/uploads/RMH-Bowel-Algorithm-v7-20111.pdf Total Prevalence - now Total Prevalence - 2030 Diagnosis & Treatment Rehabilitation Early Monitoring Later Monitoring Progressive Illness End of Life Care (Year 1 Deaths) Assessment Plus Care Plan •Breast 70-80% •Colorectal 50% •Prostate 40-50 % http://www.evidence. nhs.uk/qipp Survivorship programme: Some highlights ● 2008-2012: Testing of new models of aftercare ● 2013 publication NICE approved case study relating to new models of aftercare (breast, colorectal, prostate) ● 2013 From innovation to implementation - a how to guide http://www.ncsi.org.uk/resources/nhs-reports/adults/innovation-to-implementation-stratified-pathways-of-care-forpeople-living-with-or-beyond-cancer-a-how-to-guide/ Pre-planned tests, triage, access back to specialists via trusted route Trusted individuals able to provide Information Access to tests Access to expertise Self assessment Tools 13 New ways of working CNS perspective www.cancerconsequences Some priorities so far • Shared understanding - cancer has changed; • a good conversation between HCP and patient; • good communication between HCPs; • a recovery package, planned investigations and rapid access back to specialist care can produce better care without increasing cost. Playing a long game Thanks Charities Researchers Primary care Hospitals Community organisations Patients Cancer networks