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National Cancer Survivorship Initiative Stephen Hindle Survivorship Programme Lead 26th March 2013 What will be covered? • • • • History of NCSI What we now know Recommendations in the 2013 NCSI document Key actions going forward National Cancer Survivorship Initiative Understanding the issues National Cancer Survivorship Initiative NCSI Aims in 2008 • A document describing the vision of the care of people living with or beyond cancer • A supporting implementation plan • A set of models of care which have been piloted and work • Acceptance of ‘survivorship’ as a priority for patients • Translation of the vision into action at a local level, using approaches similar to those tested • A community of interested people who will continue to lead this agenda National Cancer Survivorship Initiative A whole cancer community effort Charities Primary care Hospitals Community organisations Researchers Patients Cancer networks What we now know 2 Million 3.2% 4 Million 5 Million Cancer Survivors % Sex Male 800,00 40 1,200,000 60 0-17 16,000 0.8 18-64 774,000 38.7 1,210,000 60.5 Female Age 65+ National Cancer Survivorship Initiative The Survivorship Pathway Diagnosis & Treatment Newly diagnosed Rehabilitation The first year National Cancer Survivorship Initiative Early monitoring Later monitoring Progressive illness Up to 5 and 10 years from diagnosis Beyond 10 years from diagnosis Incurable disease but not in last year of life End of life care End of life care in last year Diagnosis & Treatment Rehabilitation Early monitoring: 2 ≥ 5 years Early monitoring: 5 ≥ 10 years Later monitoring Progressive illness End of Life Care (year 1) 12,000 (2,000) 24,000 226,000 122,000 100,000 44,000 48,000 Breast cancer ??? 21,000 6,000 35,000 (28,000 ) National Cancer Survivorship Initiative 9,000 12,000 41,000 Lung cancer 16,000 (11,000) 24,000 73,000 51,000 45,000 28,000 40,000 Colorectal cancer Total Prevalence - now Total Prevalence - 2030 Diagnosis & Treatment Rehabilitation Early Monitoring Later Monitoring Progressive Illness End of Life Care (Year 1 Deaths) Median survival times National Cancer Survivorship Initiative National Cancer Survivorship Initiative National Cancer Survivorship Initiative NCSI 2010 Vision Document National Cancer Survivorship Initiative NCSI Vision (2010) ‘thoselivingwith and beyondcanceraresupportedto live as healthy and active a life as possible foraslongaspossible’ Five key shifts: • Cultural – focus on recovery, health and well-being • Holistic assessment – individual and personalised • Self-management – not clinical follow-up • Tailored support – risk assessment • Patient Reported Outcome Measures (PROMS) – not clinical activity National Cancer Survivorship Initiative National cancer experience survey 2010 National Cancer Survivorship Initiative Patient experience is poorer for rarer cancers Rank 1 2 3 4 5 6 7 8 9 10 11 12 13 Tumour Breast Skin Prostate Lung Colorectal / Lower Gastro Head & Neck Upper Gastro Gynaecological Haematological Urological* Brain / CNS Other Sarcoma Breast cancer patients have the best experience while sarcoma patients have the worst National Cancer Survivorship Initiative What can Cancer PROMs tell us? Patient Reported Outcome Measures(PROMS) give us an insight into: • the quality of life for those living with and beyond cancer from their experiences and point of view • impact of cancer and the treatments on ability to lead meaningful lives National Cancer Survivorship Initiative How we did it • 4,992 people identified • 3,300 people responded - a 66% response rate • Respondents from 4 tumour groups breast, prostate, colorectal and NHL • Identified from 3 cancer registries • Different measures were used to identify Quality of Life issues – One third scored a ‘high’ QOL – Half scored ‘medium’ QOL – Ten % scored ‘low’ QOL National Cancer Survivorship Initiative What did we find out? • Nearly half feared recurrence 1 year post diagnosis • Almost a third were afraid of dying 1 year post diagnosis • 38% of prostate cancer survivors reported urinary leakage and 58% reported impotence • One in five colorectal survivors reported difficulty in bowel control • Almost a third reported doing no physical activity – only around a fifth did the recommended physical activity i.e. 30 mins x 5 x week • Increased physical activity was associated with better QOL National Cancer Survivorship Initiative Taking Action National Cancer Survivorship Initiative The survivorship framework Supporting from the point of diagnosis Managing consequences of treatment National Cancer Survivorship Initiative Promoting recovery Sustaining recovery Supporting people with active & advanced disease Supporting from diagnosis • Information • Decision support • Optimal treatment • Holistic Needs Assessment • Work and Finance National Cancer Survivorship Initiative Promoting Recovery: The Recovery Package 1. Assessment and Care Planning National Cancer Survivorship Initiative 2. Treatment Summary National Cancer Survivorship Initiative Cancer Care Review • Post-treatment with GP assessment and care planning • Financial impact of cancer • Patient awareness of prescription exemptions • Possible late effects of cancer and treatment • Information needs in primary care National Cancer Survivorship Initiative 3. Health and Wellbeing Clinics National Cancer Survivorship Initiative The Recovery Package Assessment and Care Planning The Recovery Package Treatment Summary and Cancer Care Review National Cancer Survivorship Initiative Health and Wellbeing Clinic or event Meeting the needs of Londoners • Survivorship a priority area for both ICSs. • Pan London commissioning advisory group: • Integrated approach to survivorship • targets to implement assessment and care planning, treatment summary on three year basis. • London wide standardised approach to Holistic Needs Assessment and Care Planning. • Plans to introduce stratified cancer pathways. • London actively participated in piloting many survivorship services. National Cancer Survivorship Initiative Sustaining Recovery •Breast 80% patients •Colorectal 50% patients •Testicular 95% patients •Care Co-ordination •Remote Surveillance National Cancer Survivorship Initiative Supporting Self Management Frontline staff can influence healthy behaviour change: • Raise /prompt issues of lifestyle (physical activity, healthy eating) with patients • Prompt self monitoring of behaviours • Prompt specific goal setting related to behaviours • Refer to appropriate specialist (lifestyle change support) services if required National ‘ Cancer Survivorship Initiative Supporting Self Management: 10 Top tips National Cancer Survivorship Initiative Moving the 1.6m National Cancer Survivorship Initiative Moving the 1.6m National Cancer Survivorship Initiative Work and Cancer Work support is needed from point of diagnosis HCPs have a key role to encourage patients to think positively about work Complex needs patients require specialist support to return to work National Cancer Survivorship Initiative Managing the Consequences of Treatment ‘I know about potential problems, how to recognise them and get help, and professionals understand there can be solutions.’ • • • • Predict, Prevent and Manage Empower Chronic Disease management Specialist Referral National Cancer Survivorship Initiative Macmillan Electronic Holistic Needs Assessment National Cancer Survivorship Initiative Consequences of Treatment: Matching services to the numbers at risk Hundreds of people Tens of thousands Hundreds of thousands National Cancer Survivorship Initiative Severe, complex late effects Consequences ranging from mild to severe e.g. Bowel, urinary and sexual problems Increased risk of future problems e.g. CVD & osteoporosis Supporting People with Active and Advanced disease • Data collection • Discussion at MDT – new diagnosis support • Identify best practice • Links to palliative care National Cancer Survivorship Initiative Early palliative care National Cancer Survivorship Initiative Secondary breast cancer care National Cancer Survivorship Initiative Key messages • A shift in professional culture is essential to enable supported self management. • New models of cancer aftercare gives opportunities to improve quality and reduce cost. • Many people can self manage their health with support, with rapid access to professionals when needed. • There is significant unmet need arising from consequences of treatment, which can be successfully addressed through prevention and treatment. • Good survivorship care requires timely communication across boundaries. National Cancer Survivorship Initiative Taking Action: the Priorities Implementing the Recovery Package: • Assessment and care planning • Treatment Summary • Health and Well being Clinics • Cancer Care Review National Cancer Survivorship Initiative Aligning with the NHS CB Domains National Cancer Survivorship Initiative Aligning cancer with long term conditions National Cancer Survivorship Initiative Taking Action: Engagement Three key audiences: • Providers • People affected by cancer • Commissioners National Cancer Survivorship Initiative The financial case Savings • Costs • • • Assessment and care planning (£15-20m) Remote monitoring Specialist services for CoT National Cancer Survivorship Initiative • • • Fewer outpatient appointments (£41.5m for breast and bowel) Fewer unplanned admissions Better management CoT Fewer GP visits Outcome pathways: doing things differently could save ££ Average Inpatient Cost Per Patient £30K Spend per Patient In Treatment and Survivorship Phases by Survivorship Outcome Pathway (£K) Average Cost Across All Pathways: £13,006 £25K Treatment Phase £24K £20K £20K Survivorship Phase £19K £11K £10K £14K £9K £10K £14K £11K £10K £9K £9K £9K £15K £12K £8K £13K £8K £9K £6K £5K £2K £1K Share of spend on Survivorship Phase Sub 1 year Survival Short Term Survival 0-1 Year Survival 1-5 Year Survival, No Complications 9% 41% Short Term Recurrence Pre Existing Morbidities Medium Term Recurrence Living with Cancer Survivors with Chronic Conditions Complication Free Survival 1-3 Year 1-5 Year 3-5 Year Continued Continued Continued Survival, Survival, Non Survival, Survival, Survival, Non Survival, No Cancer Cancer Cancer Cancer Cancer Complications Complications Complications Complications Complications Complications 57% 58% 56% 46% 39% 22% Increasing length of survivorship Note: To obtain spend per patient, HRG 4.0 codes were costed using the 2010/11 National Tariff; costs are inpatient only, excluding locally agreed costs (such as chemotherapy), and priced at the spell, rather than episode, level (in line with how hospitals receive funding from their PCT) What does success look like? • • • • • • Recovery package implemented Stratified pathways of care More patients being supported to self manage New services for managing consequences of treatment Better community assessment and management More patients making healthy lifestyle choices promoting their health and well being Most importantly outcomes for people living with and beyond cancer will be improved National Cancer Survivorship Initiative How can you make a difference? • Read new NSCI document and discuss with others • Use the Recovery Package resources on ncsi.org.uk: – – – – Treatment Summary Assessment and Care planning Health and Wellbeing Clinics Cancer Care Review • Discuss introducing the Recovery Package at MDT/CCG • Use the ‘10 top tips’ information booklet with patients • Discuss physical activity with patients, and promote your local Walking for Health schemes National Cancer Survivorship Initiative Find out more NCSI: www.ncsi.org.uk Macmillan: www.macmillan.org.uk NSH Commissioning Board: www.commissioningboard.nhs.uk/ NHS Improvement: www.improvement.nhs.uk National Cancer Survivorship Initiative
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