Volunteer Tutors and the Expert Patients Programme

1. Volunteer Tutors and the Expert Patients Programme Anne Kennedy on behalf of NPCRDC Self-Management Team

2. Aim Use findings from 4 studies to: • Outline the challenges of managing and sustaining EPP tutor workforce • Discuss what works and in what contexts

3. The Studies Studies set within our national evaluation of the EPP • EPP process evaluation • Tutor survey • Case study of EPP in voluntary sector • EPP online: analysis of tutor role

4. Self care skills training 6-week generic course Lay-led Highly structured Open to anyone with a long-term condition • Topics include: • Pain and medication management • Relaxation • Diet • Exercise • Communication • Problem solving • Action planning Background to Expert Patients Programme

5. Volunteer EPP Tutors • Recruited after taking EPP course • Lay people with experience of a long-term condition • Trained and undergo quality control of their delivery • Two per class

6. 1. Process Evaluation Aim: • Examine how the EPP was rolled out in English PCTs Methods: • Interviews with: • Trainers • Tutors • PCT managers • Key local contacts and health professionals • Course participants

7. Challenges • Participants’ experience depends on a well facilitated course • Training in group facilitation would be beneficial • Structured nature of EPP: • Allows for a quality controlled product and provides tutors with safe and secure teaching method - BUT • Unrewarding for participants when read from a handbook and when discussions cut short

8. Challenges continued • PCT management • PCTs failed to use good will and experience of tutors and participants in local initiatives • PCTs not good at post-course support • PCTs not experienced in managing volunteers

9. 2. Tutor Survey Aim: What makes a successful volunteer EPP tutor? Methods: Postal survey of 519 tutors from 233 PCTs

10. Findings • Tutors likely to be productive were: • single • homeowners • car owners • low scores for depression

11. Challenges • Risk of tutors becoming disaffected • Well placed to give time to other voluntary organisations • Role at odds with the limited responsibility expected from a voluntary role • Feelings of being undervalued and exploited based on: • PCT mismanagement • Lack of feedback and response to queries • Difficult to recruit and retain tutors from groups without material advantages

12. 3. Case Study Aim: Compare voluntary sector run EPP with that of PCT’s Methods: Observation of course for people with HIV organised by Body Positive NW

14. Findings • A place to meet outside the course helped develop social networks and break social isolation • Tutors could signpost people to relevant help and advice provided by the organisation • Organisation able to support and train new tutors

15. 4. Online Tutors Aim: Evaluate how tutors engage people with long-term conditions in the ways of ‘good’ self-management Methods: Qualitative analysis of content of online EPP course and interviews with tutors

17. Findings Tutors portrayed themselves as: • Strong advocates for EPP • Evangelistic about the benefits of EPP • Highly motivated • Responsible citizens

18. Findings continued Their role was to: • Encourage and motivate • Be a role model and suggest appropriate action • Judge when to respond or intervene NOT there to: • Judge people • Solve problems (difficult in practice when participants did not help each other) • Give medical advice

19. Findings - Positive • Well supported by course monitors and technical advisors • Flexibility – the course could be fitted around their daily life • They had time to plan responses • There was 24/7 support for participants

20. Findings - Challenges • Workload higher than expected – spent much time carefully reading every post • New computer skills had to be learnt • Close external monitoring meant their autonomy was compromised • Power of written word led to tendency to be risk averse • Hard to deal with negative reactions online

21. Some Solutions • Establish clear and supportive communication with tutors • Build on goodwill and skills rather than ignoring them • Recognise and provide adequate resources for their long-term condition needs • Incentives and strategies to recruit and support tutors from marginalised groups

22. Publications Relating to EPP Tutors • Kennedy A, Rogers A, Gately C. From patients to providers: prospects for self care skills trainers in the NHS. Health and Social Care in the Community 2005;13:431-40. • Lee V, Kennedy A, Rogers A. Implementing and managing self management skills training within Primary Care Organisations: A national survey of the Expert Patients Programme within its pilot phase. Implementation Science 2006;1:1-6. • Kennedy A, Macdonald W, Lee V. Calling in the experts. Health Service Journal 2006;116:28. • Macdonald W, et al. What makes a successful volunteer Expert Patients Programme tutor? Factors predicting satisfaction, productivity and retention of a new public health workforce in the United Kingdom. Patient Education & Counseling 2008;in press.

23. Thanks to All the EPP course participants and tutors who took part in the research