Chronic Disease Management and the Expert Patients Programme

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

The Expert Patients Programme The pilot phase

The Expert Patient Programme A 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

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 Self Management aims to:

EPP Course content 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

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

Divided between east and west 1 Senior trainer & 1 trainer in each SHA 1 Senior trainer & 1 trainer in each SHA EPP Pilot

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.

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

"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 Puts people back in control

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

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

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

The Expert Patients Programme Mainstreaming

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

National : Training and quality assurance framework

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

No Yes Patient newly diagnosed or condition changes Consider specialist support case management No further action, patient will have necessary skill and knowledge to alert care team if condition changes. Attend EPP course No 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 Attends routine appointment with practice nurse/out patients. Is care plan working ? Does patient now have confidence to self- manage condition? No

What really happens to people?

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

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?

“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

Thank you! Patrick Hill Clinical Governance Support Team