The Expert Patients Programme (EPP) is an evidence-based intervention based on research from the USA and UK. The programme was piloted by the National Health Service across England, funded by the Department of Health and rolled out across all Primary Care Trusts in each Strategic Health Authority. In Cheshire and Merseyside, each of the fifteen Primary Care Trusts’ piloted four self-management courses from 2002 to 2004, which are now being completed. The programme was pioneered by Professor Kate Lorig from Stanford University in California, USA. The NHS in the United Kingdom licensed this from Stanford University. Arthritis Care introduced lay-led self-management programmes in to the UK, with ‘Challenging Arthritis’ and the Long Term Medical Conditions Alliance (LMCA), introduced the generic course in to the UK, with a three year project, ‘Living with Long-term Illness (Lill) project, involving eight voluntary sector organisations. In 1999 the Government released its white Paper ‘Saving Lives - Our Healthier Nation’ which expressed a commitment to EPP in the NHS Plan (2000).In 2001, the final report was released ‘The Expert Patients Programme – a new approach to chronic disease management for the 21st Century’, committing to a two year pilot and evaluation of the programme.
In Cheshire and Merseyside, there is a senior trainer, trainer and an administrative assistant who co-ordinate EPP across all the 15 PCT’s within the Cheshire and Merseyside Strategic Health Authority. Across England there are 21 similar zones whose remit is to roll out the EPP through every Primary Care Trust.
What EPP involves
The programme is a self-management course for anyone over 18 years old living with any long-term physical or mental health condition. Courses are delivered in the local community by volunteer tutors who themselves live with or have experience of chronic conditions. Courses last two and a half hours and are run at the same time over a 6 week period. As the programme is licensed, it is delivered from a scripted course manual, which all tutors adhere to. Volunteers are trained according to the quality assurance structure of the course. The process or the way the self-management programme is taught is as important, if not more important than the content itself. Courses are designed to empower people to take back control of their health, by understanding and managing their health condition(s) more effectively, thus improving their quality of life.
The course involves the following:
- Action planning
- Problem solving
- Communication skills
- working in partnership with healthcare professionals
- Relaxation techniques/cognitive symptom management
- Medications
- Nutrition (healthy eating)
- Exercise (for fitness and fun)
Benefits to participants
At present, all courses are generic (i.e. they are not condition-specific), and aim to improve people’s ability to cope with pain, communicate with health care professionals, regain independence and mobility, reduce pain, stress, fatigue and depression, all of which lead to improved quality of life. The programme provides the necessary self-management skills to break the vicious cycle of having a chronic condition; pain, anger, fear, frustration, fatigue, stress/anxiety, tense muscles, and depression, which can lead to loss of income, which in turn impacts on home and relationships, reduces the quality of life and can often lead to isolation. The programme seeks to alter behaviour which may prevent deterioration of the condition. Many programme participants volunteer to run other EPP programmes or become volunteers in other organisations, others go on to do educational or recreational courses, some gain the confidence and health to change jobs, and some medically retired people return to work. Participants often report that their quality of life has improved even before the full 6 week session has been completed.
Benefits to healthcare professionals
- Enhanced communication skills
- Reduced consultations
- Reduced missed appointments
- Reduction in attendance at A & E
- Fewer patients are admitted to hospital
- Waiting lists are reduced
- There is a reduction in home visits
- Prescription costs are lowered as self-management of pain etc. often involves relaxation rather than medication
How volunteers become involved
The majority of volunteer tutors become involved as they find the programme improves their quality of life, and they want to share this with other people who have long-term medical conditions. Volunteers must complete an application form, produce two references and have a face-to-face interview. If successful, they will go on to have an enhanced Criminal Records Bureau (CRB) check, and then attend the Volunteer Tutor Training Programme, which lasts for 4 days. Once trained, volunteers must adhere to the quality assurance set by Stanford University. Tutors sign an agreement, to deliver 2 courses a year for 3 years. In order to become an accredited facilitator, the tutor must have been successfully assessed by a qualified assessor for an NHS recognisable accreditation..
All volunteer tutors reported that they continued to gain benefits from facilitating courses, namely as they were still part of the self-management process. Volunteer tutors are managed and supervised and social events are arranged so tutors can keep in touch with each other.
Evaluation
The Expert Patients Programme has been evaluated/is being evaluated in the following ways:
- Internally by the Department of Health
- Externally by the National Primary Care Development and Research Team at Manchester University (and York University).
- An Improving Working Lives (IWL) self-management programme was also piloted among NHS employees to evaluate the benefits of a self-management programme to NHS staff living with long-term health conditions in the work place, and this is currently being evaluated by Professor Julie Barlow and Dr David Ellard Interdisciplinary Research Centre in Health Coventry University.
Future plans
The Expert Patients Task Force set up in 1999, by the Chief Medical Officer, Professor Liam Donaldson, is commissioning the development of disease-specific modules from UK experts, i.e. asthma, colitis, coronary heart disease, diabetes, irritable bowel syndrome, and mental health conditions. Plans are underway to expand the programme for carers, parents of children living with chronic conditions and it is also hoped that EPP will eventually be delivered inside prisons, as many inmates have long-term, diverse medical conditions.
Raising awareness
Tutors interested in raising the awareness of the Expert Patients Programme, do so by being involved in roadshows, giving talks to GPs, nurse specialists, attend conferences i.e. the National Primary Care Development Training Collaborative. Tutors also give presentations at workshops to Primary Care Clinicians i.e. Cheshire and Merseyside tPCT Collaborative; Pharmacy Concordance workshops involving role-playing with pharmacists to highlight how it feels to live with a long term health condition.
GPs are recognising the benefits of the Expert Patients Programme. One GP has hosted 2 courses at his practice and has requested 4 courses be held each year, as he found the self-management courses were extremely beneficial to his patients and himself. With other G.P’s now running courses, Cheshire and Merseyside EPP are keen for GPs to run self-management programmes in their practices as long as they have full disabled access and facilities and have a room accommodating up to 16 people comfortably. GPs are also being encouraged to replace prescription pads for medication, with referral pads for EPP, for conditions such as fibromyalgia, irritable bowel syndrome, multiple sclerosis, ME, Crohns disease, arthritis, Parkinsons disease and stress and anxiety. Carers are welcome to attend the self-management courses for themselves, often they too live with long-term health conditions, but often do not recognise taking care of their own health as being a priority.
What tutors think
"Before I heard of the Expert Patients Programme I have been the Facilitator for the Merseyside Irritable Bowel Syndrome Self Help Group for a few years . I joined the EPP course for 6 weeks and after that I thought I would like to help other people with a long term condition, this is why I became a Volunteer Tutor for the Expert Patients Programme.
I find it very rewarding that after 6 weeks of the course participants can start to Self Manage their condition, and I find great satisfaction in that I have helped them manage that as a volunteer.
As a volunteer I find that one significant thing that comes out of being a volunteer is having time to listen to other people with Long Term health Conditions.
Being a volunteer you get great satisfaction helping other people, and it greatly benefits the volunteer." (G.L. Volunteer tutor)
“When I was a participant on the EPP, one aspect which I found very helpful was being encouraged to set a weekly Action Plan. Now that I am a volunteer tutor, I am given the opportunity to continually practice this and other skills which enable us to become better self-managers.
All the tutors ourselves have various long-term conditions, in my case Lupus; so in the sessions we share in the same processes which have proved to be so effective, gaining benefit and skills from each other.
The benefits of volunteering are two fold - both for the participants and the volunteer tutor. You can’t beat the buzz that you get when course members relate how the programme has helped them so much. It is even better when some have become motivated, as I was, to be trained as tutors themselves”. (M. G., Volunteer tutor)
“I enjoy watching the participants on the Programme becoming more positive and confident as they progress through the 6 week course. As I become more experienced as a tutor I continue to gain useful new skills and discover strengths I did not know I possessed, which helps me feel confident in my abilities. I benefit from the support and goodwill of the team overseeing and delivering the Programme. It is uplifting to work with such genuine, caring people, and I have made some very good friends. I feel I am being useful because I know I am doing a worthwhile job. Although we are delivering an important and serious message, we are encouraged to do so with warmth and humour, so being a tutor in the Programme means I have a lot of fun and laughter”. (J. S, Volunteer tutor)
For further information please contact:
Lyn Wilson
Senior Trainer/Co-ordinator for Cheshire and Merseyside Expert Patients Programme
or
Pat Holmes
EPP Trainer
Tel: 0151 547 3139
Fax: 0151 547 3130
Email: Lyn.Wilson@nhsepp.org
Pat.Holmes@nhsepp.org
EEP information:
www.expertpatients.co.uk
National phone enquiry line (local call charge): 0845 606 6040
‘Expert Patients Programme Update’ - Newsletter published 3 times a year. Copies obtained from the distributors ‘Professional Briefings’:
email: profbriefings@msn.com
Tel: 020 7233 8322
