Self-Management Courses for People Living with Long-Term Illness

When I was starting to get better from ME/CFS I got involved in Self-Management Courses for People Living with Long-Term Illness - after my brief talk today at the local Arthritis Care group someone asked for more info and I thought I would post stuff here....it was infact Arthritis Care nationally who provided the training in London for the self-management course leaders like myself.

Photo: Beech tree leaves yesterday

The idea is that these self-management courses give people with chronic illnesses the opportunity to also become experts in managing their conditions. Anyhow some of this stuff below is now out of date as some health authorities are now also organising schemes and I've seen courses advertised in Gloucestershire.

‘Within every patient there resides a doctor and we physicians are at our best when we put our patients in touch with the doctor inside themselves’
Albert Schwetzer (1875 - 1965)

I still consider it is a crucial way forward - although after my own experiences of running these courses I am not wholly happy with the way it is delivered using volunteers - 'though I still consider there is a truth to the statement: If you think of the patient with a chronic condition as the Cinderella in the health system then lay led self management is the golden slipper.

1 in 3 adults lives with a long-term illness - in England.
Two-thirds of people aged 75 and over have a long-standing illness or disability.
Many live with more than one condition - particularly older age groups.

Here's something I wrote a long while back on this:

Living Well courses

There is an increasing awareness of the need to respond to the challenge presented by the incidence of long-term conditions. We know answers will not just lie with technological medical interventions but rather with learning to our manage chronic diseases. People with long-term chronic conditions have known this for years - it is the daily management of our symptoms which can help to determine the quality of our lives.

Research consistently shows that a key component of successful management of long-term illness is the inclusion of the patient as partner in care. Patients provide individualised information about their condition while health professionals provide general information. Both are necessary for effective management.

One approach to enable this partnership is self-management education - such programmes have been around for many years - an important element being participants learn from each other and become more confident in their ability to manage their disease.

One of the most successful schemes in Self-Management has been the course pioneered by Kate Lorig and I’d like to briefly go over how it came about.
History

This chronic disease self management course started life as the disease specific Arthritis Self-Management Course. The unique and attractive feature of it was that Professor Kate Lorig and her team at Stanford University started by asking people with arthritis what they wanted to know in order to cope better. They then consulted health professionals and conducted an extensive literature review. This led to a manual being produced that was a distillation of expert opinion research and experience.

Professor Lorig’s experiences of developing courses for people with arthritis and then other conditions such as diabetes and HIV was instrumental in the development of this more generic course aimed at all people living with chronic conditions. She recognised that people with long-term conditions are dealing with similar issues on a daily basis, these include pain management, stress, low self-image and developing coping skills. A more generic manual was produced.

In the UK in 1998 the Long Term Medical Conditions Alliance held a joint conference with the Royal College of Physicians looking at how self-management of long term conditions could be extended. Following this they secured funding for the Living with Long-term Illness (LILL) project which meant that a first rate coordinating function could be undertaken to involve a range of different disease groups in self-management courses.

Research was undertaken into different Self-Management courses. Kate Lorigs ‘Chronic Disease Self-Management Course’ was chosen as the best way forward.

Why the Kate Lorig Model?

Tried and tested and over 100 research papers
Experience of lay led delivery
Across three continents
Ideal vehicle for partnerships
Distillation of expert opinion

Prior to this Arthritis Care in the UK had set up their Challenging Arthritis courses and this led to them taking a key role in establishing the training. Since the 1998 conference an increasing number of organisations including the ME Association, British Liver Trust, Diabetes UK, Haemophilia Society, Depression Alliance, National Endometriosis Society, National Osteoporosis Society and the British Polio Fellowship became actively involved. Just recently MS Society has joined.

Partnerships have developed with a range of NHS and Social Service providers and between charities moving away from a disease specific focus. For example the course I ran in Bath was with a tutor from the British Liver Trust and was funded partly by the local Primary Care Team.

Underlying Assumptions to this approach

- People with chronic conditions have similar concerns and problems
- People must deal with not only their disease(s) but also with the impact these have on their lives
- Lay people with chronic conditions when given a detailed tutors manual can teach the programme as effectively if not more effectively than health professionals
- The process or way the programme is taught is as important if not more important than the subject matter that is taught

The tutors
This is what is known as a ‘high challenge high support volunteering’ approach. In other words it requires loads of effort and commitment from the volunteers and the sponsoring organisations. But it also gives support so that volunteer tutors can;
- achieve personal growth and the development of transferable skills
- opportunity to give back to others coping with a chronic condition - this is one of the main reasons quoted for getting involved and certainly part of my motivation. I also hope that it will be a step closer to returning to paid employment.

About 400 volunteer tutors deliver the Challenging arthritis course in the UK. However there are only about 50 tutors trained like myself, nationally delivering the Self-Management course for people with chronic conditions. 13 of these are fully accredited (ie been assessed on 2 courses) with the others in the process. Another 30 are planned for this year.

Some have delivered this course to a single disease group where others have delivered it to mixed disease groups. In both tutors like myself and the participants walk together discovering new skills and techniques to break the vicious cycle of fatigue, pain, depression, frustration and anger which is often part of living with a chronic condition.

All the tutors have experience of living with a chronic condition and meet a set criteria, before undergoing a four day residential training programme which covers;
- all the material in the manual that has been put together for presentation with various group exercises and discussions
- how to work in an adult group setting
- how to market and deliver a course in a local community

As tutors, we must also experience and internalise the messages of the training ourselves, in order for the training to be effective. It is the beginning of the process whereby we become better self managers. Indeed on the courses tutors often find they learn lots. This has certainly been true for me.
Complement healthcare provision

Another attractive feature is that the courses are intended to complement and provide added value to existing health care provision, not to replace it. Compare the figures....
Added value to health care
15 - 30% reduction in symptoms with self-management
40 - 60% relief with best health care
55 - 90% when used together

Tutors maybe experts at managing our own conditions but we do not set ourselves up as experts to participants - if issues arise we refer them back to the health care teams.

The US National Arthritis Plan: Public Health Policy indicates that self-management is not an optional extra or a luxury. It is an integral part of being able to cope on a daily basis with a condition that is not going to go away. Patients who have been on the course will use resources better and thus be a lesser strain for the NHS.

Feedback from health care professionals is that these courses enable their patients to meet them in a much more informed manner. One Scottish consultant calls it the ‘anti-winging course’.

They have in some areas created an active informed group of patients willing to participate in consultation on purchasing decisions and the development of health care provision.

In line with Government thinking

The course is also compatible with the government’s priorities for improving the health of the nation and challenging social exclusion. For example, learning self-management skills can in many cases substantially improve the quality of life for people living with long term conditions such as heart disease and stroke as well as arthritis.

Following the Governments’ White Paper in 1999, Saving Lives: Our Healthier Nation, the Chief Medical Officer has set up a Task Force to design an Expert Patients programme to address the needs of the very many people in the country with a chronic disease or disability. They have already looked very favourably on this course.

The Task Force is itself a partnership of people who are living with chronic conditions, voluntary sector organisations working in this area, health and social care professionals and carers' representatives. The Chief Medical Officer chairs the Task Force himself, such is the importance he places on its work. It is due to be published very soon.
The course

Topics

Goal Setting
Cognitive Symptom Management
Relaxation
Anger, Fear and Frustration
Fitness / Exercise
Better Breathing
Fatigue
Nutrition
Living Wills / Power of attorney
Communication
Medications
Making Treatment decisions
Depression
Informing your Health care Professional
Future Plans

Every minute of the course is scripted. The courses are two and half hours long each week for six weeks. They are delivered in community halls or other suitable local venues.

The process has a beginning and an end so as not to encourage dependency of participants. It is about giving people the tools to use in their daily lives.

The classes are always taught by two leaders who have a chronic condition. For example, this year I will run a course with a tutor from the Haemophilia Society while the course in Bath I mentioned was witha tutor from the British Liver Trust. On that course in Bath we had participants with ME, heart conditions and MS.

Role modelling is an essential part which makes it difficult for a participant to say ‘You cannot know what it is like’

Every week except for the first week starts with feedback of how participants have got on with their individual action plan. Something they want to do not what they think they should do and something achievable. Moving to action not being passive recipients of information is the aim of the course.

The primary aim of the course is not to impart medical information, but to facilitate the development of self-management skills such as problem solving and goal setting. This ability to manage and control various aspects of the condition like fatigue and pain increases participants confidence.

Self-management is not primarily about conveying information, it is about developing confidence and motivation so as to effectively manage.

For example in relation to exercise, we know that about 70% of nursing consultations include something about exercise, but the compliance rates are dire. We know from our research findings that up to 12 months after the course participants are still exercising and in the US they have shown that up to four years after the courses participants are still using many of the techniques discussed.

In essence it is about true empowerment where people are given the tools to make decisions and take effective action in order to accomplish a specific behaviour – a belief that you can make a difference improves.

Other models

There are models otherthan this one. The LILL project coming out of the 1998 conference with the Long-term Medical Conditions Alliance, that I mentioned earlier, found that there are over 30 self-management interventions used across the country. You can read more in their report, ‘Partnerships for Successful Self-Management’ (February 2001)

The programmes fall into two main groups, professionally led and lay led. The majority of lay led programmes (ie 11 of the 13 organisations) are using the Lorig chronic disease self-management course.

Research

There is considerable research to show that self-management of chronic conditions, when delivered in addition to standard care, benefits participants. Group and individualised approaches have similar effects, although individualised contact with health professionals is more costly.

In the UK all the research int the Lorig course has been undertaken by Professor Barlow and her team at the Psycho-Social Research Centre at Coventry University. Monitoring and evaluation of all the courses in the UK was being done primarily with questionaires going to participants before and after the courses then again after months but they also interviewed people, have asked participants to keep logbooks and have held focus groups.

What the research at Coventry shows is a decrease in pain, depression, fatigue, less anxiety and fewer visits to and better communication with doctors. And a sustained use of self-management techniques.

Coventry University Research findings

Attendence on courses was high with 69% remaining at the final week
Participants self-evaluation demonstrated very high satisfaction ratings, 91%
Four months after the course participants reported statistically significant increases in; perception of disease control, use of self-management techniques (ie cognitive symptom management, communication with GPs), health status (ie mental health)
Four months after the course participants reported statistically significant decreases in; fatigue, anxious mood, health distress, visits to specialists
Participants also showed improvements (not statistically significant) in symptom control, shortness of breathe and depression
Tutors reported increases in self-efficacy
Research data is consistent with US research

As you can see the content of the courses are developed on sound evidence based research which demonstrates positive long-term outcomes. The ongoing research findings feed into the dynamic process of developing the content of the courses. To protect the integrity and efficacy of this process, the courses may only be delivered after formal training and under licence from Stanford University.

The most recent data from a five year research project in America of more than 1000 people who participated in a CDSMC reflects the research findings here.
Chronic Disease Course research findings. Stanford University, US

Increased confidence in dealing with symptoms
Increased use of exercise
Reduced levels of fatigue and disability
Reduced hospitalisation
Improved communication with physicians

www.stanford.edu/group/perc/bibliog.html

What participants have said

‘The course has given me my life back’ ‘There is no magic pill, but the course gave us the necessary skills to start rebuilding our lives and believing in ourselves again...The course has given me back my confidence and the skills to make the management of the condition something I can now have some control over’ ‘I shared my feelings in a safe, contained environment and learnt coping strategies, and breathing techniques which I use several times a day’ ‘Somewhere within the six weeks the light bulb goes on. The message is really powerful, the answer has got to come from within you’ ‘The visual evidence is clear that each one of us has made improvements with the management of the condition’

The future

As you have seen there already exists a great deal of research and experience within the voluntary sector of developing and managing lay led Self-Management Programmes. It would be great to see these further developed to compliment government priorities for health and lifelong learning.

I hope I have also shown you that in this approach where people with long term conditions take the lead, we have been able to increase individuals ability to feel more in control of their condition and that this is the key factor to maintaining long lasting positive behaviour change.

Another aspect of the potential for added value is the compatibility between this programme and the government’ s priorities for improving the health of the nation and challenging social exclusion. For example, learning self-management skills can in many cases substantially improve the quality of life for people living with long term conditions such as heart disease, and stroke. The course will also save the NHS money in terms of fewer visits to GPs and in terms of having healthier people with chronic illnesses.

The project continues to grow. There are several tutor courses planned for this year, a project with an inner London Health strategy group to develop a programme for the Bengali community and a health action zone to create a comprehensive programme across a whole region.

What is needed now is support to take this work forward.

To build on the superb coordinating role by Long-term Medical Conditions Alliance which enables information to be shared and for charities to work together
For Arthritis Care to be supported in their role as a lead training organisation working with other interested organisations.
For more effective partnerships with health authorities, primary Care Groups Healthy Living Centres
For partnerships with health professionals and other voluntary organisations so that lay led self-management is seen as part of a package of provision including drugs, therapy, hospital treatment, professional led education

No-one ever became empowered by being told what to do when to do it and what to think or say. It is a long journey that never ends it is a jigsaw of experiences and exposures that can be challenging and frustrating and nearly always enriching.

Those of us with a long term condition do not have a choice about managing we can do it passively or proactively. We can let it control us or we can take control over it. Self-management techniques are at the forefront of hospitals without walls solutions the country is turning to with mounting urgency.