Communicating the National Cancer Survivorship Initiative Vision

1. Communicating the National Cancer Survivorship Initiative Vision Stephen Hindle 1

2. Cancer Survivorship: 5 key facts • Number of survivors in UK will increase from 2m to 4m by 2030. • Many people with incurable cancer can live good quality lives for years. There are different patterns of incurable disease: chronic (both from cancer and from cancer treatment), progressive, dying. 3. Current face to face out patient follow up doesn’t meet patients’ needs, isn’t good value for money, and won’t cope with increasing numbers. 4. NCSI propose 5 Key Shifts to significantly improve quality of aftercare for cancer survivors. 5. These shifts are cost effective through targeting resources on those that need them (risk statification) and better assessment/ coordination of care (Manchester Monitor work)

3. Cancer Survivorship: 5 key facts • Number of survivors in UK will increase from 2m to 4m by 2030. • The cancer story is changing. Many people with incurable cancer can live good quality lives for years. There are different patterns of incurable disease: chronic disease caused by cancer, chronic disease caused by cancer treatment, progressive, dying. 3. Current face to face out patient follow up doesn’t meet patients’ needs, isn’t good value for money, and won’t cope with increasing numbers. 4. NCSI propose 5 Key Shifts to significantly improve quality of aftercare for cancer survivors. 5. These shifts are cost effective through targeting resources on those that need them (risk statification) and better assessment/ coordination of care (Manchester Monitor work)

4. Why it’s got to shift – the evidence • Better coordination of care improves quality, and uses NHS resources efficiently (Monitor Manchester study). • Patients believe follow up spots recurrences, but estimated >75% recurrences can be picked up without face to face follow up, (by symptoms or scheduled blood tests/imaging/endoscopy). • Risk stratification will identify who needs the most help, and where we can stop spend on ineffective services. A reduction in ‘empty’ out patient appointments could pay for improved aftercare services.

5. Why it’s got to shift – the evidence (2) Rapid Review of Follow Up: NHS Improvement 2009 General model is traditional follow up over 5 to 10 years Little use of clinical risk stratification No common assessment, often no written care plan, patients have little choice or control Patient Experience of Care Survey: Picker 2009 Many want more information on physical & emotional aspects, diet and exercise at end of treatment Majority didn’t know who to contact out of hours Written up to date care plans not the norm. The current system isn’t working for patients. 5

6. Why it’s got to shift – what people living with and beyond cancer want

7. Five Key Shifts • Cultural shift in approach, from focus on cancer as acute illness to greater focus on recovery, health, and well-being after treatment. • To assessment, information provision and personalised care planning based on assessment of individual risks, needs, preferences. • From clinically led approach to supported self management, empowering taking of responsibility , supported by clinical assessment. • To tailored support to enable early recognition of consequences of treatment and signs & symptoms of further disease, & personalised support for those with advanced disease. • From emphasis on measuring clinical activity to measuring experience and outcomes for cancer survivors through routine use of PROMS.

8. What’s got to shift: Cultural shift Shift 1 Change the thinking and culture around cancer from a disease treated in the acute sector, to More focus on recovery, health and well being, return to work Preparing people for the long term – living with and beyond cancer

9. Shift from “Follow-up” to “Aftercare”

10. Assessment, information provision and care planning (ACP) Shift 2 At least a quarter of cancer patients have unmet needs a year after treatment due to cancer or the treatment. (Armes et al 2009). Shift to every patient having an assessment, information, and a personalised care plan, so that their unique needs can be met.

11. Testing impact of: Consistent approach to ACP at two points in cancer pathway MDT communication to primary care (treatment summary record) at end of treatment Templates for improving quality of GP Cancer Care review 11

12. Macmillan is funding 15 pilot HWB Clinics across the UK HWB Clinics happen at the end of treatment, where patients hear from professionals about managing their cancer, signs and symptoms, and how to get help. They will get help with lifestyle management, and information about self management and support groups. Volunteers will be key to the clinics, meeting & greeting, organising and offering peer support. Health and Well Being Clinics 12

13. Using self assessment tools to stimulate better conversations ….. Significantly better discussions between patients and both doctors and nurses when person affected by cancer has completed an electronic self assessment form Velicova 2005

14. Children & Young People Testing models of: • Survivorship Treatment Plans and Pathways • Appropriate follow-up and risk stratification. • Continuing support of education needs • Dealing with non-clinical issues to ensure ‘normal’ life following diagnosis and treatment.

15. Supporting patients return to work Nearly 800,000 cancer survivors are of working age • Testing model of helping people get back to work ‘vocational rehabilitation’ through pilots. • Providing support for employers. • Study into patient experience of DWP programmes. • Developing thinking about carers’ issues.

16. Shift 3 What’s got to shift : Self management support: “self management support is what health services do in order to aid and encourage people living with a long term condition to make daily decisions that improve health related behaviours and clinical, and other outcomes”

17. Shift depends on three elements: • Self management education and training programmes • Skills development for professionals • Institutional support for service redesign ‘Activates’ & empowers people, promoting self management skills (goal setting, action planning) Improves quality of life, knowledge of condition, coping behaviour, self efficacy, and symptom management.

18. Lifestyle change more important for cancer survivors than others Obesity Dietary fat intake Exercise Smoking Health and well being clinics offer opportunities for all to learn more about how to manage their disease

19. What’s got to shift:Tailored support - consequences of treatment Shift 4 Shift 4 • New illnesses emerge months, years, decades later. A quarter of survivors live with significant consequences of treatment . • Need to move from single model of follow up so that people get the right treatment and support • Avoidable consequences avoided • Unavoidable consequences recognised & managed to minimise disability

20. What’s got to shift (4)Personalised support for those with advanced disease • Need to know when and how to seek medical support when worried about possible recurrence • Need specialist services for recurrent / advanced disease • Need clear process re transition to End of Life Care,

21. What’s got to shift: Patient Reported Outcome Measures (PROMS) to Shift 5 • Identify & target populations with needs • Promote better conversations with professionals • Trigger “information prescriptions” • Monitor change • Measure outcomes

22. What underpins the shifts (1)Research - including • Review of survivorship evidence • Mapping of ‘survivorship journey’ for common and less common cancers • Review of outcome measures in self management • Review of current practices in follow up • NCRI Rapid review of research into survivorship and End of Life Care 2010 focus on research about risk stratification

23. Insight from combining data sources Patient reported outcomes GP research database Hospital episode statistics Radiation episode statistics Cancer registry Chemotherapy prescriptions

24. What underpins the shifts (2)NCSI Test communities: • NHS Improvement running adult and children pilots in England and Wales about assessment and care planning. Will follow up successful pilots by ‘prototyping’ models for further roll out and testing. • Macmillan running pilots testing • Health and Well Being Clinics • Vocational rehabilitation • Complex consequences of treatment (RAGE) • Supported self management

25. What underpins the shifts (3) Community of Influence: Consequences of Treatment • Macmillan and DH initiated community of influence to: • Deliver work to develop understanding of issues within field of long term consequences of treatment. • Provide leadership to further influence thinking and profile of consequences of treatment. 25

26. What underpins the shifts (4): User involvement

27. What happens next: 1. Commissioning guidance for survivors Ongoing engagement with clinical community Work with communities of practice, Royal Colleges Publication of peer reviewed articles in respected journals. Initial evidence used to create commissioning guidance for autumn 2010 to inform 2010/2011 planning. Ongoing 2010/11 testing, prototyping and research provides evidence to revise commissioning guidance for autumn 2011. 27

28. We have six expectations of NCSI • A document describing our vision of the care of people living with or beyond cancer • A supporting implementation plan • A set of models of care which we have piloted and we know work, which will be commissioned by PCTs and practices • 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

29. Cancer survivors Sex / Age / Site % Male 800,000 40 Female 1,200,000 60 Colorectal 250,000 12 Lung 65,000 3 Breast 550,000 28 Prostate 215,000 11 Other 920,000 46 0-17 16,000 0.8 18-64 774,000 38.7 65+ 1,210,000 60.5 Who are the two million cancer survivors?

30. National Cancer Survivorship InitiativeSurvivorship Care and Support Pathway Remains Well Remission / Follow up Remains well Late / Long term effects Survivorship care plan – living document setting out aftercare Primary treatment Diagnosis Recurrence Advanced / Active Disease 2nd & Subsequent Treatments EofLC Crosscutting themes of work/education, finance, self management, research, information, commissioning