1. 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

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

3. 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

4. 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.

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

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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

13. Transformed Pathways of Care: Overview

14. 3 Levels of care and support

15. Self-management with support and appropriate surveillance

16. Care Management

17. Complex Care

18. 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

19. 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

20. 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)

21. 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.

22. 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)

23. 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

24. 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?

25. 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
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