1. Information Line 0845 606 6040 www.expertpatients.nhs.uk

2. Information Line 0845 606 6040 www.expertpatients.nhs.uk Roy Jones Independent Advisor EPP Implementation Group Background Arthritis Care and local Voluntary sector ECLN Associate

3. Information Line 0845 606 6040 www.expertpatients.nhs.uk Delivery of EPP in England Role out through PCTs 28 teams 98% of PCTs active ( 4 refused) 750+ courses delivered 10,000+ participants Average 14 start 10 complete 4 sessions or more

4. Information Line 0845 606 6040 www.expertpatients.nhs.uk Activity of participants pre course

5. Information Line 0845 606 6040 www.expertpatients.nhs.uk Number of chronic conditions per participant

6. Information Line 0845 606 6040 www.expertpatients.nhs.uk Participation by ethnicity

7. Information Line 0845 606 6040 www.expertpatients.nhs.uk Age profile

8. Information Line 0845 606 6040 www.expertpatients.nhs.uk Arthritis 39% CHD or vascular disease 32% Back pain or other pain 26% Diabetes 18% Depression, anxiety or mental Asthma or respiratory disease 13% Main conditions reported ME / chronic fatigue Multiple Sclerosis Irritable Bowel Syndrome Psoriasis Polio Cancer Epilepsy 0ver 300+ conditions reported

9. Information Line 0845 606 6040 www.expertpatients.nhs.uk Mainstreaming EPP as part of a integrated chronic disease strategy

10. Information Line 0845 606 6040 www.expertpatients.nhs.uk Secondary care Elective surgery rehab Benefits & employment Condition specific treatment plan, education & management Primary care Home based treatment and monitoring systems Voluntary sector agencies Social services EPP Self management skills Patient forums PPI Private sector services

11. Information Line 0845 606 6040 www.expertpatients.nhs.uk Mainstreaming EPP Needs to part of how we do things A key tool for developing equity A partnership between local patient organisations and PCTs Consistency and flexibility

12. Information Line 0845 606 6040 www.expertpatients.nhs.uk We will provide Teams will stay in place for next 2-3 years Translation of core materials Support on working with different cultural and social economic groups Consultancy and examples of good practice in developing effective condition specific education. A internationally recognised quality assurance framework developed with LMCA. Training and support to all organisations wishing to develop self management Develop learning networks to share good practice

13. Information Line 0845 606 6040 www.expertpatients.nhs.uk Chronic Disease Management and the Chronic Disease Self-management Course KF Managing Chronic Disease –…self-management by patients in primary care is not unusual in high quality providers across the US… –The NHS and in particular PCTs, could learn from this and work with patients and carers to develop the skills needed for self-management –The EPP is beginning to encourage such approaches, but it is in its infancy and not well funded. –Pages 41-42

14. Information Line 0845 606 6040 www.expertpatients.nhs.uk Kate Mitchell Adult Services Team Devon Social Services Background in hospital social work department and interdisciplinary work

15. Information Line 0845 606 6040 www.expertpatients.nhs.uk Pathway with a Long-term Medical Condition Diagnosis of MS 7 years ago Used local services including MS Therapy Centre Read widely Worked with my health professionals Kept to diet and exercise programmes Who needs an Expert Patients Programme?

16. Information Line 0845 606 6040 www.expertpatients.nhs.uk What I found The tutors lived with MS and osteoporosis People owned their suggestions and acted on them Mutual support from peers Growth in confidence

17. Information Line 0845 606 6040 www.expertpatients.nhs.uk A key choice Most of us had strong feelings- –Frustration, depression, anger Will we be victims? –Muddling through Will we exert more control? –Practice new skills

18. Information Line 0845 606 6040 www.expertpatients.nhs.uk My choice My old excuses lost validity –Too tired –Its too much trouble Fellow participants were embracing a more positive outlook

19. Information Line 0845 606 6040 www.expertpatients.nhs.uk Nothing New The programme topics include –Diet –Exercise –Relaxation methods –Finding resources in the community –Communication It is much easier to practice these with others who are similarly affected

20. Information Line 0845 606 6040 www.expertpatients.nhs.uk Communication with Health Care Professionals It is easy to be overwhelmed by the frustration and, There is no cure The programme encouraged us to be –Realistic –Clear –Informed

21. Information Line 0845 606 6040 www.expertpatients.nhs.uk Emotional support One tutor was quite ill, the group provided emotional support She knew and valued their support because it came from people with a personal understanding of living with a chronic condition

22. Information Line 0845 606 6040 www.expertpatients.nhs.uk Comments from health and social care professionals Patients expertise is helpful Doing unto replaced by partnership. The patient know his/her responsibility for making treatments work Active self-managers use resources appropriately Patients regaining control encourages professionals. Work is more enjoyable Social workers are relieved when responding to expressed need rather that devising services

23. Information Line 0845 606 6040 www.expertpatients.nhs.uk Expert Patient Power Teignbridge lacked physiotherapy Now, after negotiation: –Exercise class devised by physio delivered by assistant –Assistant gained NVQ 3 –A similar course devised for people with arthritis

24. Information Line 0845 606 6040 www.expertpatients.nhs.uk Final Comments We can make conscious decisions about how we act. I choose to be an active self- manager Not everyone will be open to the concept The courses should be available There are benefits to participants, their families and their health and social care workers

25. Information Line 0845 606 6040 www.expertpatients.nhs.uk Participants improved health status Self reported health Energy Activities and social role Health distress Fatigue

26. Information Line 0845 606 6040 www.expertpatients.nhs.uk Aerobic exercise Stretching and strengthening Cognitive symptom management Communications with doctors

27. Information Line 0845 606 6040 www.expertpatients.nhs.uk Person living with long term illness and their family Condition specific treatment plan, education & management Peer educators Home based treatment and monitoring systems Education and support for careers EPP Self management skills Confidence building Benefits & employment support and information Tests & Diagnosis