I was lucky enough recently to get a place on an NHS funded Expert Patient Programme (EPP). Currently these programmes are being run on a trial basis with Primary Care Trusts (PCTs) with NHS funding before they are completely rolled out by 2007.
The course was developed in America at Stanford University. Arthritis Care adopted the model in the UK and it was rolled out across the country. It was recognised that the scheme delivered universal material and the majority was not disease specific. The course was then adopted by the Long-term Medical Conditions Alliance (LMCA), who called their programme Living With Long-term Illness. The success of the project has now led to the Department of Health to fund 3-year pilot projects and all PCTs can be pilot sites.
The benefits are many: reduction in severity of symptoms, decrease in pain, improved life control and activity, improved resourcefulness and life satisfaction, reduced visits to GPs, Accident & Emergency and outpatients, enhanced quality of doctor: patient relationships, fewer hospitalisations and of a shorter length of stay. Some participants go on to employment or become more socially active. Problem solving, decision-making, resource utilisation, developing effective partnerships and taking action are the key self-management issues addressed by the course.
The course is once a week over six weeks, for two and half hours. Two tutors, both of whom have a chronic condition of their own, facilitate the course. They have been on the course as a patient and received further training to facilitate the courses. Each session follows the formal structure because it has been thoroughly trailed, tested and it is important to ensure that each topic is covered. Tutors can be assessed during the delivery of a course to help ensure it is being delivered to an adequate standard.
Week 1: The ground rules are established - everything that is said stays in the group and everyone should feel that they could be honest and share their true feelings. Time is spent on finding out what each member of the group is suffering with and how it affects them. It was interesting to see how many of the symptoms overlapped from diabetes to heart disease via MS and arthritis. Relaxation and better breathing were covered and there were breathing exercises to do. The disease/pain cycle was described and we were told that the course would help us learn how to break this at different points to help us live with our conditions. A large part of the course is around action planning and problem solving. This helps us adjust to living with a chronic condition and ensures that we have the resources to deal with ever changing sands. Many in the group for their first action plan adopted the better breathing and found great benefit in relaxation and pain management.
Week 2: We looked at our first week's action plans and we discussed problems. Anger, fear and frustration were the first topic. Everyone in the group could relate to having felt at least one of these emotions in the past if not on a regular basis. Again we discussed breaking the pain cycle. Exercise was then the potentially controversial subject addressed and many of the group felt anxious about it. Some had been told that they could not exercise, some did not realise that a gentle walk counted as exercise! The key point here was that everyone had a different starting point and if you did no exercise at all, walking up the stairs 3 extra times a day was an improvement. Again action plans were made and followed up the following week.
Week 3: We talked about fitness again and looked more specifically at aerobic exercises rather than flexibility and strength as in the second week. We also looked at dealing with fatigue and at relaxation and cognitive symptom management. This was as simple as guided imagery where you think of being somewhere else or flexing and relaxing each part of your body. Once again action plans were made for the coming week and we were all feeling a lot more relaxed with the concept of planning our week ahead!
Week 4: We concentrated on three areas along with more action planning and problem solving. We talked about nutrition and healthy eating, covering the benefits of a healthy diet both in terms of our illnesses as well as our general health. Then we talked about living wills, not an easy topic as it was very emotive but we learnt about where to find out about them and who to discuss them with. Finally we discussed communication and how to make sure that we aren't too accusatory but using a simple "I" statement like "I don't think I am getting my point across" rather than "You don't understand me" is easier for the people we are talking with. We also discussed situations where we find it difficult to communicate and tried to find some solutions for these problems.
Week 5: We reported back on our action plans as usual and the group helped with some problem solving where actions had not been completed. We discussed medication and learnt about the benefits of maintaining an up to date list of all (including over the counter and prescribed) medicines. Managing depression was next and we looked at the signs and symptoms as well as ways in which to break the cycle of depression. "Self-talk" was one method we looked at which are the thoughts that we have and why they can make us feel worse. We learnt ways in which to turn our self-talk in to more positive thoughts such as "I can't do sport anymore" to "not all sport involves lots of physical activity". We then looked at making informed treatment decisions and ensuring we understood what was happening to us as patients including using resources such as the Internet and drug trial data. We were then treated to some "Guided Imagery" where we virtually went for a walk in the countryside. Many people find this technique helpful for relaxation and as diversion from pain. Finally we set our action plans for the coming week.
Week 6: We looked at our previous week's action plans and problem solved as required. We looked at accurately reporting our symptoms, trends, problems and the results of action taken to our healthcare teams. Communication was also covered, both with our families, friends and healthcare teams. We learnt that we would have approximately 18 seconds to convey our messages to doctors before they went in to their questioning mode. We learnt the "Take PART" acronym that stands for Prepare (for your appointment), Ask (questions), Repeat (back what you have been told) and Take action (as prescribed by your doctor). Finally we looked at what benefits we had gained from attending the course and our future plans. We all said our goodbyes and some swapped addresses and 'phone numbers. We were also asked to consider volunteering to train to be a tutor for the EPP.
Each two and a half hour session is broken up with a short break for people to have a drink and stretch their legs. There is "homework" each week which consists of reading some of the manual, 'phoning a group member and completing action plans/ diaries as required. You will be encouraged to discuss things and feed back on your action plans with the whole group as well as in small groups of 2 or 3 (depending on the number of participants of each course). Whilst this may not be easy for everyone, it helps you to concentrate on your action plans and on how topics may make you feel.
Everyone will have a different starting point and reasons for attending the course. It is important to realise that one person may already be more active than another so for them walking around the block is a more simple task but for you it may take all six weeks to build up to achieving it. It is important to remember this and to realise that you will not be judged, or compared with other participants.
The course is accompanied with a book that is given to participants. The book is also available from most bookshops. This book is currently only published in America so is full of Americanisms so be warned! Living a Healthy Life with Chronic Conditions, Halsted Holman, David Sobel, Diana Laurent, Virginia Gonzalez, Marian Minor, Kate Lorig (Editor). ISBN: 0923521534 Published by Bull Publishing Company
If you want to learn to live as well as possible with your lupus, contact your local PCTs and ask if they are running trial courses in your area. They may not be running the courses yet, but the more people who enquire about them, the more they are likely to go ahead and run them!
Personally, I feel that the expression expert is not helpful as I think it could potentially antagonise some doctors. It would probably be more helpful if the course were termed Self-management. However as the EPP is a self-referral programme this should not be a problem providing support groups such as Lupus UK help spread the word of the programme along with its benefits.
The main benefits for me were meeting new friends, understanding how different diseases can effect different people, spreading awareness of lupus, thinking about resources I had previously not considered and probably the most significant for me action planning to help achieve goals. I would recommend the course to anyone. Whilst there is a lot of common sense within the content of the course, it does give you protected time in which to think about you and your illness and also to think about ways in which you can help yourself.
To find out if there is an EPP course in your area contact your local PCT who will be able to put you in touch with any programme tutors. More information is available in the "Supporting Expert Patients" pack issued by the LMCA 2001. You can also find information on this and similar types of courses on the Internet at http://www.lmca.org.uk and http://www.doh.gov.uk/cmo/ep-report.pdf. I have volunteered to be a tutor for the programme and will soon be starting my training for this.
Thanks to Carol Fentimen, East Cambridgeshire and Fenland PCT, Karen Walton - Senior EPP Tutor and Peter McNally - EPP Tutor.