Supporting Cancer Survivors - A New Aftercare System Adam Glaser Clinical Director NCSI Gilmour Frew Director: Cancer Improvement NHS Improvement Steve Hindle Survivorship Programme Lead Macmillan Cancer Support

Goals of cancer care Adding years to life & Adding life to years

Is there a need for change? 2 million living with and beyond cancer in UK 1.6 m completed therapy Prevalence increases by 3.2% p.a. 4 million in 20 years Late consequences 60% adult survivors of young people’s cancer have 1 or more late consequence 10 years from completion of therapy Increasing with time from completion of therapy

Follow-up Current situation >25% of people had unmet needs 1 year post Treatment Armes JCO, 2009 2009 Picker survey of over 2,000 survivors: 43% wanted more information & advice 75% did not have, or did not know if they had, a care plan 75% did not know who to contact for advice outside of office hours.

Follow-up Current Situation Not meeting all user’s needs Inconsistent Not evidence based Unsustainable

Cost of 5y Hospital Follow-up Breast: £ 916 Lung: £ 546 Colorectal: £1,130 Prostate: £1,051 29% of adult patients' contact with NHS is unplanned (by cost) Personal costs range from £227 to £857 for adults at follow up clinics

National Cancer Survivor Initiative Aims To understand the needs of those living with & beyond cancer To develop models of care to meet their needs To design evidence-based sustainable services to accommodate the increasing numbers of cancer survivors in the future

Emerging Principles Risk Stratified pathways of care rather than one size fits all Dynamic personal care plan which arises from an assessment of the disease, the treatment, and the individuals personal circumstances Information provision should meet individual needs and should be timely, accessible and promote confidence, choice, and control Individuals should be encouraged to self manage with support and rapid access to appropriate professional when problems arise 8 8

Enablers Awareness and education patients and staff Evidence to identify what is being done well & what needs to improve Innovation Automated surveillance Health & well-being reviews Education programmes patients and staff Exercise programmes Sensitivity to current economic climate Patient reported outcomes

Prototype Testing Hypothesis By introducing 3 risk stratified levels of care for those living with and beyond cancer there will be a measurable difference in: The patient experience of care Have all the information and advice required to manage their condition Who know who to contact in and out of hours should they have a problem Who have been offered a care plan At least a 50% reduction in out patient attendances, and a 10% reduction in unplanned admissions

7 prototype communities, testing Testing in Practice 7 prototype communities, testing 3 levels of care Self managed care Shared care Complex care 4 tumour types Breast Colorectal Lung prostate

Transformed Pathways of Care: Overview

3 Levels of care and support

Self-management with support and appropriate surveillance

Care Management

Complex Care

What is self management? ‘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 & clinical, & other outcomes’ Self management education/training programmes Skills development for professionals Institutional support for service redesign Promotes self management skills (goal setting, action planning) for improved quality of life, knowledge of condition and coping behaviour. Testing at Southampton University Hospital Trust. (NCSI, adapted from Co-Creating Health (The Health Foundation, 2008) Have knowledge of the condition and treatment Share in decision making with health care professionals Use a self management care plan agreed in partnership with Health Care Professionals Monitor and report signs and symptoms Have the ability and confidence to manage the impact of the condition on physical, emotional, occupational and social functioning. Adopt lifestyles that address risk factors and promote healthy living Be able to access and use support services

Health and Well Being events Patients and carers need support and information to prepare for transition after treatment. Testing HWB events where patients get support from professionals about managing their cancer, signs and symptoms, and how to get help. Support with lifestyle management, information about self management and support groups. Volunteers will be key, meeting & greeting, organising and offering peer support. 19 19

Lifestyle change more important for cancer survivors than others Obesity Dietary fat intake Exercise Smoking We know that the end of treatment is a ‘teachable moment’ where people are far more likely to make changes to their ongoing health behaviours. We know self management works for people with long term conditions Cancer survivors have similar health & well being profiles (Health & Wellbeing Survey 2007) We know many could benefit from improved awareness of late effects and the importance of healthy lifestyle (HWB Follow-Up Survey 2008)

Consequences of cancer treatment Becomes “part of the cancer story” for patients, professionals and commissioners Patients need to know about effects of treatment, including how to recognise and get help where necessary Working so that professionals know about the problems and understand that there can be solutions Commissioners need to know how to build this in to the services that they buy. We are testing new ways to provide specialist services for people affected by the consequences of pelvic radiotherapy.

Work and Cancer 109,000 working age people each year diagnosed with cancer in UK Nearly 800,000 people of working age in UK have had a cancer diagnosis Cancer survivors tell us work is important - restoring normality, social contact and income BUT, 50% of patients not offered flexible working arrangements & 80% of employers not aware that cancer is covered by Equality Act (2010)

What are we doing about return to work? Developed information for employers, employees, and the self employed – now on Macmillan website Testing ways to support people about work concerns in 7 ‘vocational rehabilitation’ pilots Early results – people want information about work early, but professionals give mixed messages Managers often lack knowledge/skills to manage staff with cancer Patients are unaware of their employment rights Expert advisers can predict & help with problems patients are not yet aware of Final report due September 2011

Breakout challenge Discuss in groups: How does this fit with the new Health White paper? What are the enablers? What are the challenges to implementation?

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 ncsi.org.uk