National Cancer Survivorship Initiative

1. National Cancer Survivorship Initiative 2010 Update

2. The NCSI: Current activity • The Cancer Reform Strategy established the National Cancer Survivorship Initiative (NCSI) which is working to ensure that those living with and beyond cancer get the care and support they need to lead as healthy and active a life as possible, for as long as possible. • The NCSI is working to demonstrate that through investment in new models of cancer aftercare there are opportunities to improve quality and efficiency of services. Adopting new cancer ‘aftercare’ models can free up ‘empty’ outpatient appointments and enable investment in specialist services for those who need them. • The next key activity is ‘prototyping’ of risk-stratified pathways of care, which can demonstrate: increased numbers of patients with a care plan, reduction in outpatient visits and reductions in avoidable A&E attendances and admissions

3. NCSI Economic Evaluation Summary During 2010 the NCSI completed an economic evaluation exercise to understand the costs to the NHS and to cancer survivors of current follow up arrangements. The work suggests that: • The average personal cost of patients of a single attendance a single out-patient clinic ranges from £21 to £54 for adult survivors. For children and young people and their families the costs ranged from £65 to £160. The costs are higher for CYP clinics mostly due to more time taken off work by parents attending clinics with their children. Over 5 years of follow up these costs range from £227 to £857 for adults and from £385 to £953 for attendances at CYP follow up clinics. • 22% of adult respondents and 19% of CYP respondents said that they had noticed new symptoms that they had not yet discussed with a health care professional that they planned to raise at their appointment. • 59% of both adult and CYP respondents said they had seen their GP at least once since their previous appointment at the follow up clinic. • 36% of adult respondents and 41% of CYP respondents report being seen by another healthcare practitioner since their previous clinic appointment

4. Key points from Case Note Review During 2010 the NCSI undertook a case note review of 600 records to establish the cost to the NHS of current follow-up care over 5 years. The case note review suggests that: • Over 5 years of follow up on average 29% of adult patients' contact with NHS is unplanned (by cost) • On average, these unplanned events cost £317 [£1,094 x 0.29] per patient over 5 years • The average overall costs per adult patient for each tumour type are: Breast: £916 Lung: £546 Colorectal: £1,130 Prostate: £1,051 Figures in progress and subject to change. Data range is across 11 different hospital sites - the case note review covered Breast, Colorectal, Head & Neck, Lung, Prostate cancer, and Myeloma.

5. Emerging principles to support implementation of the five shifts The NCSI’s emerging principles suggest commissioners should ensure that people living with and beyond cancer: • have risk stratified pathways of care rather than a one size fits all approach • have a dynamic personal care plan which arises from an assessment of the disease, the treatment, and the individual’s personal circumstances following diagnosis • receive information provision that meets individual needs, is timely, accessible and promotes confidence, choice, and control • are encouraged to self manage with support, with rapid access to appropriate professional care when problems arise

6. Transformed Pathways of Care: Overview

7. Self-management with support and appropriate surveillance

8. Care Management

9. Complex Care

10. Key questions to consider • What are the principles and challenges to redesigning how services are delivered for those living with and beyond cancer? • What is unique to cancer? What is general to other conditions that have been managed, or to long term conditions? • What do commissioners need to do differently? • How do you measure the quality, effectiveness and safety of services for people who are living with and beyond cancer? • What are the implications for the workforce to deliver redesigned pathways of care and support?

11. Summary Exciting opportunity to pro-actively influence the delivery of care to a rapidly increasing percentage of the population Challenge to develop practical, sustainable evidence based pathways offering enhanced quality and productivity