1 Supported self management for people living with cancer Stephen Hindle Cancer Survivorship Programme Lead 16 th April 2010

2 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” It can viewed in two ways: as a portfolio of techniques and tools: and as a fundamental transformation of the patient- caregiver relationship into a collaborative partnership” (Co creating Health Programme 2008) Shift 3

3 Long term conditions and supported self management Evidence that self management can improve health status in chronic conditions: can empower the person to act for themselves, increase confidence in their ability to manage consequences of both condition and its treatment, and enhance health quality of life. Aspects of cancer survivorship are emerging as having a ‘chronic component’.

Cancer survivors have similar health and well being profile to people with other long term conditions. (Macmillan Health & Wellbeing Survey 2007): Four times more likely to have health problem Higher percentages have ongoing physical problems 30% of cancer survivors agreed their health prevented them from working in their preferred occupation Higher percentage had used various health services, including GP, specialist doctor, A&E and surgery. 4

Need improved awareness of late effects and the importance of healthy lifestyle and support for lifestyle decisions (Macmillan HWB Follow-Up Survey 2008) 40% unaware of late effects of cancer and treatment 35% unaware of increased importance of healthy lifestyle 40% with a psychological condition did not seek help; 19% with a physical condition did not seek help. 5

Evidence – Who Benefits? 6 Personalised assessment and management plan. A partnership relationship with their health professionals which enables self- management. Risk stratification – tailoring of support to need. Tailored information that enhances knowledge.

Who to target for higher levels of support? Less prepared for survivorship or self management support Survivors experiencing depressive symptoms/ greater psychological difficulties Greater risk of sexual dysfunction related to treatment Ethnic minorities Low literacy groups Single, socially isolated, lacking social support Older people and others with co morbidities or mobility issues Individuals requiring behaviour change or lifestyle changes 7

Evidence of benefitsEvidence Clinician training for supporting self-management during the consultation. Coulter & Ellins, 2007; Powell et al., 2009; Epstein & Street, ‘Intensive’ adjustment-focused self-management programmes targeted at ‘high risk’ survivors. Cockle-Hearn and Faithful, Design of programmes should have a theoretical basis to the design: -information provision -problem solving -modelling -personal goal setting -practice -social comparison -goal review - CBT techniques - consider length Abraham and Gardner, 2009; Coulter & Ellins, Lifestyle behaviour change requires ongoing support / coaching. Coulter & Ellins, 2007; DoH 2008 Self-help resources eg videos/DVDs effective/cost- effective if incorporate self-efficacy (peer modelling). Mandelblatt et al., Self-management interventions can have cost advantages over conventional care. Mandelblatt et al., 2008.

Supported self management ‘whole system change’

Supported Self Management framework Supported Self Management Activated, engaged and informed patient. Health professional sharing power and responsibility Service redesign: Tailored support and aftercare pathways Self management programme Assessment and care plan Training in self management support for professionals Information prescription

Birmingham East and North PCT – New pathway for breast cancer Service redesign – breast cancer follow-up and support pathway: (1)telephone based care managers; (2)assertive case management; (3)practical support service Self management education programme - HOPE Advanced Development programme for professionals 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

13 Implementing self management shift depends on three enablers:  Self management education and training programmes  Skills development for professionals  Institutional support for service redesign