Chronic Disease Management

and the Expert Patients Programme

SelfManagement

Level 170-80% of a

CDM pop

POPULATION WIDE PREVENTION

Level 2High riskpatients

DiseaseManagement

Level 3Highlycomplexpatients

CaseMgt

Chronic Disease Management

Can long term conditions be

categorised so neatly?

The Expert Patients Programme

The pilot phase 2002 - 2004

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

• 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 sessionx

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

EPP Pilot 2002- 04

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

VolunteerTutors

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 2004 - 2006

Future for EPPLocal • 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

Yes

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 courseNo

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!Thank you!

Patrick HillPatrick Hill

Clinical Governance Clinical Governance Support TeamSupport Team

patrick.hill@ncgst.nhs.ukpatrick.hill@ncgst.nhs.ukwww.expertpatients.nhs.ukwww.expertpatients.nhs.uk