1. National Cancer Survivorship Initiative Central Hall, Westminster Monday 21 September 2009 Self Management

2. Self Management Support Workstream National Cancer Survivorship Initiative Where are we now? Lynn Batehup 21 st September 2009

3. Workstream workshop - content The working definition of self management and self management support Baseline work Drivers for change Evidence leading to a framework Supported self management framework Potential pathways for aftercare and support??

4. Self Management in cancer is what people do to enhance recovery and/or manage their condition. (long term) Self management tasks Recovering from diagnosis and treatment of primary cancer Enhancing health and well being Living with a chronic condition Late effects Active/advanced disease Enhancing health and well being Manage the aftermath Symptoms/effects: Treatment/physical and psychosocial consequences – early and later Monitoring and surveillance Adherence to treatment Understanding risk profile Early recognition of secondary, recurrent or advanced disease Quality of life Lifestyle factors – health and well being Activity/exercise Diet and nutrition Alcohol and tobacco Work and finance Cognitive and emotional development Emotionall and social adjustment Coping and stress Hope

5. Self Management support is what health services do to encourage cancer survivors make decisions that improve their health and clinical outcomes.(THF) Collaborative professional – patient relationship Equal relationship 1.Self management programmes 2. HCPs supporting self management in routine clinical practice 3.Interactive technologies: Internet/telephone Supported Self Management

6. Cancer survivorship and self management: Reviewing evidence base. Review of evidence base for self management support for cancer survivors (and drawing on work in long term conditions) February 2008 Fenlon and Foster 2008) Mapping – a snapshot of services identified as supporting self management (Mar – July 2008) Review of outcome measures for self management support in the context of cancer survivorship April 2009 (Davies 2009) Updated review of the evidence for follow-up support services (Ongoing) Review of evidence for impact of specific lifestyle factors on cancer recovery and survival. (ongoing)

7. Drivers for change – self management – living with and after cancer Impact of cancer does not stop when treatment is over – first year is a difficult one Physical burden (94% of respondents reported physical symptoms in the 1 st year after treatment, ‘Its no Life’) Emotional/psychological burden(75% report psychological conditions in the 1 st year after treatment) Work and financial burden Impact on lifestyle factors Activity/exercise/leisure Weight Nutrition Alcohol and tobacco use Skin care 35% of cancer survivors were unaware of the importance of ‘healthy behaviours’(‘Its no Life’) A chronic condition More patients with active/advanced disease will live for many years – responding to cycles of treatment) Cancer treatment associated with increasing risk of other chronic conditions(heart disease/diabetes, osteoporosis Long term disabilities associated with treatments(71% reported a physical condition 10 years after treatment ended – Its no Life)

8. Self management support evidence: 1. Collaborative interaction/patient professional relationship: Basic building block is the culture change to incorporate self management support and use behaviour change techniques during routine clinical practice to enhance patient’s abilities and confidence to be effective ‘self managers’ 2. Self management programmes: Programmes can develop generic skills such as problem solving and enhancing self efficacy, and /or be type/symptom specific. There can be improvements in QoL, symptom management, coping behaviour, and knowledge of condition. 3. Self management is for all: It starts with exploring patients beliefs, knowledge, and values about their role in self management – it’s a journey

9. Self management support evidence 4. Consistent Supporter Tailored ‘support’ and follow up - ( based on periodic assessment and a personalised care plan) in planned pathways will promote self management – lifestyle change; effective self monitoring; event reporting; symptom management; well being and quality of life. 5. Tackling the whole system Informed and active patients – able to use support Prepare and develop professionals – patient centred approach Service improvement – design and process to support self management

10. Evidence: ‘Supported self management framework’: Tailored support and aftercare pathways Redesigned services Empowered, engaged and informed patients Prepared and skilled professionals Whole System change Professional culture Collaboration and partnership relationships Assessment and survivorship care plan + an information prescritpion Self management support programmes Consistent support/coach Training and development for professionals Transformed professional – patient relationship

11. Thank you Lbatehup@macmillan.org.uk

12. Questions for feedback From what you have heard today, what is the most important? What, if anything, has been left out? What will be the difficulties in implementation How can we overcome these difficulties