Survivorship Update February 2012

1. Survivorship Update February 2012 Steve Hindle Macmillan Survivorship Programme Lead

2. National Cancer Survivorship Initiative (NCSI) Vision The‍ vision ‍of the‍ NCSI‍ is‍ that ‍by‍ 2012, ‍those‍ living‍ with ‍and ‍beyond‍ cancer‍ are‍ supported‍ to live as healthy and active a life as possible ‍for‍ as‍ long‍ as‍ possible.

3. What do we know • Evidence of what the problems are • How many cancer survivors, and where they are in their experience of cancer • PROMs will show how many people have what problems (March 2012) • Designed and testing evidence-based sustainable services • Economic evidence • Mapped to NHS Outcomes Framework

4. NCSI: where we are in the initiative cycle Implement Engagement with clinicians & commissioners Innovate Investigate 20092015 Time We are here

5. Emerging principles Personalised pathways of care, rather than one size fits all, using risk stratification approach Many people can be encouraged to self manage with support , with rapid access to professionals when needed Importance of holistic assessment leading to care plan to meet the individual’s personal circumstances Information provision to meet individual needs, timely, promoting confidence and choice

6. Key messages Current services are not meeting patients needs, and will not be able to cope with future numbers. Through investment in new models of aftercare for cancer survivors, there are opportunities to improve quality and efficiency of services. Assessment and care planning will personalise care and can make significant differences to patient quality of life. Supported self management can improve the quality of life for survivors Good survivorship care requires timely communication across health and social care boundaries

7. 3 Levels of care and support

8. NCSI Prototypes NHS Improvement leading testing of risk stratified pathways in 8 prototype communities across 15 projects in Breast, Colorectal, Lung, Prostate. Testing enablers of remote monitoring and care coordination. Ipsos MORI baseline report out now on NHS Improvement website Final report March 2012. NHS Improvement - Cancer Effective follow up: Testing risk stratified pathways May 2011

9. Care coordination Remote surveillance ‘I need to know my patient’s treatment and care is safe’ ‘I want to be treated as a person and know who to contact when I need help’

10. Assessment and care planning ‘No one asked me what I thought was important’ 75% of patients did not know if they had a care plan Picker 2009 Piloted assessment and care planning 2009/10 Treatment summary tested - available to implement Cancer Care Review templates available Testing electronic solutions to assessment and care planning Assessment and Care planning now a Peer Review measure

11. Self management support ‘I didn’t know what I could do to help myself’ 1 in 3 patients reported 5 moderate / severe unmet needs at end of treatment - for 60% this had not improved 6 months after treatment, Armes et al 2009 Involves approaches which empower and activate people so that they feel confident about managing their condition and are more likely to change/alter their behaviour. ‘activating’ people so that they can use information and support to manage their health and alter behaviours. Re/skill/train clinicians to take a supportive ‘power sharing’ rather than a ‘power holding’ approach. Use service improvement expertise to make changes. Testing at Southampton University Hospital Trust.

12. Health and Well Being Clinics - 15 pilots 2010/11 • Half day event to help patients manage transition at end of treatment. • Information re signs and symptoms, signposting to services, support and discussion. • Increased patients’ knowledge and confidence, knew which services to use, ‘I felt abandoned and we didn’t know where to turn’ Macmillan HWB survey 2008

13. Physical activity ‘I know that physical activity could help me’ • Helps with treatment effects inc. fatigue, depression • Physical activity influences breast, colorectal and prostate mortality and recurrence • 12 week pilot - breast cancer survivors active in/after treatment saved NHS £1500 in 6 months • ‘Move More’ campaign

14. More chronic conditions Heart failure & breast cancer OR: 1.33 Nada Khan In press BJC *Adjusted for BMI, smoking Matched to non-cancer survivor controls on the basis of age, sex and practice

15. More other chronic conditions osteoporosis & prostate cancer OR: 1.59 Nada Khan In press BJC *Adjusted for smoking and underweight Matched to non-cancer survivor controls on the basis of age, sex and practice

16. Consequences of cancer treatment ‘I know about potential problems, how to recognise them and get help, and professionals understand there can be solutions.’ • Informing patients eg promoting use of Macmillan Radiotherapy booklets, testing web based Oncolink • Enabling non specialists to recognise eg Launch BSG guidance for professionals Q4 • Developing specialist services eg for complex late effects of pelvic treatment across 3 sites • Understanding patterns eg linking data sets to give ‘NHS footprint’ for patients

17. New chronic conditions RT & CT related illnessese.g pelvic cancers • 17,000/ year pelvic RT (UK) • gynaecological, urological, • colorectal, anal cancers • 80,000 living after pelvic RT • Bowel, urinary, sexual issues ?

18. ‘My GP says for a long time he did not know what was going on…I thought I was making a fuss.’ ‘It’s the little things put together that wear us down’ ‘‘My oncologist asked how I was – how embarrassing to tell him.’

19. Consequences of Cancer Treatment Collaborative (CCAT) http://www.cancerconsequences.org/index.html 12 Post Doc nurses & AHPS taking the agenda forward. • To improve care for people living with the effects of cancer • Bridge the gap between research and practice • Individual and collective projects • Influencing UK research and policy agenda

20. NCSI Vocational Rehabilitation model (draft) ‘No one gave me advice and I lost my job’

21. Survivorship Patient Reported Outcomes Measures (PROMs) Pilot PROMs survey to understand: - outcomes for people following cancer treatment over time; - their quality of life - variations in outcomes e.g. co-morbidities; - Eg how many colorectal cancer patients cannot control their bowels years after treatment? 4992 questionnaires sent, response rate = 68% Reports March 2012 DH hope to further develop PROMS Survey, potential national roll-out 2012.

22. Success measures ‘How will we know that the NCSI has made a difference?’ Improving Outcomes: A Strategy for Cancer (DH 2011) Reduce % survivors with unmet physical, psychological, social needs Increase % cancer survivors able to live independently / able to work who had cancer as a child or young person now in education/ employment Economic evidence PROMS Evaluations More to be done

23. Identifying the cancer care pathway Diagnosis & Treatment Rehabilitation Early monitoring Later monitoring Progressive illness* End of life care [Year 1 deaths] Newly diagnosed – assumed need of acute sector care Surviving the first year – assumed need of rehabilitation End of life care in last year – subset of deaths in first year of diagnosis Beyond 10 years from diagnosis – designated ‘later monitoring’ Up to 5 and 10 years from diagnosis – designated as ‘early monitoring’ Incurable disease but not in last year of life – assumed need more treatment and support We aim to estimate the number of people likely to be in a given phase of the care pathway in a given year * The numbers in the progressive illness group will be underestimated and the numbers in the monitoring groups will be overestimated as estimates for significant late effects have not been made.

24. Cancer which has spread

25. Cancer which is incurable

26. Recurrent cancer & the need for early treatment with chemotherapy ? Early Delayed 1.00 0.75 Proportion surviving 0.50 0.25 0.00 0 6 12 18 24 30 36 42 48 54 60 Months since randomisation Ovarian cancer (OVO 5) Same Survival early cancer treatment or wait for symptoms (Rustin et al 2009)

27. Palliative care can improve survival as much as chemotherapy

28. Breast cancer care pathway – estimating the number of women in the UK, 2008* Colorectal cancer care pathway – estimating the number of people in the UK, 2008* Lung cancer care pathway – estimating the number of people in the UK, 2008*