Chronic Disease Management

1. Chronic Disease Management and the Expert Patients Programme

2. Level 3 Highly Case complex Mgt patients Level 2 Disease High risk Management patients Level 1 Self 70-80% of a Management CDM pop Chronic Disease Management Can long term conditions be categorised so neatly? POPULATION WIDE PREVENTION

3. The Expert Patients Programme The pilot phase 2002 - 2004

4. The Expert Patient ProgrammeA New Approach to Chronic Disease Management for the 21st Century • Key Recommendation Establish a programme for developing more user-led self-management courses to allow people with chronic illness to have access to opportunities to develop the knowledge confidence and skill to manage their condition better

5. Self Management aims to: • Deal with the generic consequences of conditions - loss of confidence, pain and fatigue • Improve people’s problem solving, decision making and confidence • Develop partnerships between patients and health professionals

6. 2.5 hours per session x 6 weeks goal setting/action planning problem solving exercise symptom management techniques fatigue management dealing with emotions communication medication community resources EPP Course content

7. Key aspects of lay-led self-management • Emphasis on living with condition not just managing illness • social model not biopsychosocial • Does not provide health information • Generic course not condition specific • Leader facilitates problem solving does not provide answers • The course process facilitates group and individual learning getting participants to draw on their own experiences

8. 1 Senior trainer & 1 trainer in each SHA Divided between east and west EPP Pilot 2002- 04

9. Progress so far • 15,000 people with LTCs attended an EPP course • Specialist courses piloted for parents and young people • Bi-lingual tutors are being trained • Courses delivered in Prisons, with marginalised and ethnic minority groups • An on line course being trialled in 2005 for people who cannot attend community groups.

10. Volunteer Tutors Participants Courses 900 15,000 1550 98% of Primary Care Trusts taken part

11. Puts people back in control "The most important thing is the confidence the course has given me – I would never have dreamed of training to lead a course like this before – now I want to share the techniques with other people."Alison - County Durham

12. EPP emerging trends • 45% felt more confident that common symptoms would no longer interfere with their lives • Pain, tiredness, depression, breathlessness • 38% felt that such symptoms were less severe 4 – 6 months after completing the course • 33% felt better prepared for consultations with health professionals EPP monitoring data N = 1000 Jan 03 – Jan 05

13. EPP emerging trends Significant reductions in service usage • 7% reductions in GP consultations • 10% reductions in Outpatient visits • 16% reductions in A&E attendances • 9% reductions in Physiotherapy use EPP monitoring data N = 1000 Jan 03 – Jan 05

14. EPP emerging trends • 50% of participants live with 3 or more LTCs • Over 94% of those who took part felt supported and satisfied with the course • Many positive comments made about the course but people also want longer term support to build on the progress they have made to help them re-establish themselves in society as confident self managers. EPP monitoring data N = 1000 Jan 03 – Jan 05

15. The Expert Patients Programme Mainstreaming 2004 - 2006

16. Future for EPP Local • A mainstream NHS service available in every PCT • Self-management support commissioned locally by PCTs according to need and availability • Integrated with other services locally National • Central support including robust QA • Developments - EPP Online • Part of a wider Public Health agenda

17. National : Training and quality assurance framework

18. Local: Integration with other services • Range of different services available for different conditions in primary and secondary care: • Pain management • DESMOND / DAFNE • Cardiac Rehabilitation • COPD programmes • Services provide different care pathways

19. Patient newly diagnosed or condition changes Attends routine appointment with practice nurse/out patients. Is care plan working ? Professionally led disease specific education and self care skills Does patient have the support and confidence to implement changes and follow care plan? Attend EPP course + Information given on local support groups, national & local organisations No Does patient now have confidence to self- manage condition? Yes Attend EPP course No Yes Consider specialist support case management No Yes No further action, patient will have necessary skill and knowledge to alert care team if condition changes.

20. What really happens to people?

21. Real challenges We need to understand more about : • the impact of long term conditions • the impact of multiple long term conditions • what we really need to do to support people to become effective self – managers

22. Qualitative research • People with long term conditions emerging as effective self managers describe having been on a journey. • Long term conditions can cause a gradual disintegration of the person’s sense of self before beginning a long rebuilding process to establish themselves in society as confident self managers. • How can we really support them through this?

23. “The real epiphany is the realisation that all patients self manage, all the time. If health professionals act in a way that undermines people’s coping skills, then they can expect to see patients calling on their services with increasing frequency.” Coulter and Elwyn 2002 BJGP 10/2002 Quality Supplement s23

24. Thank you! Patrick Hill Clinical Governance Support Team patrick.hill@ncgst.nhs.uk www.expertpatients.nhs.uk