Chair: Marion Lovell Jones and James Miller, Hammersmith and Fulham PCT
Speaker: Matt
Facilitator: Ian Hayes, Self-management tutor
Rapporteurs: Ian Hayes and Marion Lovell Jones
This workshop was held twice during the conference and was attended by 70 people altogether. Ian Hayes, a self-management master trainer, began by giving participants some background information.
This is part of a spectrum for the management of chronic disease which runs from simple self-care as practised by everyone, through various forms of ‘learned’ self management to detailed case management approaches involving significant professional intervention.
Self-Management is defined as ‘the systematic provision of education and supportive interventions by a health care system to increase patients’ skills and confidence in managing their health problems, including regular assessment of progress and problems, goal setting and problem solving support.’ Institute of medicine, 2003.
It aims to:
Deal with the consequences of the condition such as loss of confidence, fear of the future, pain and fatigue
Improve people’s problem solving, decision making and confidence
Develop partnerships between patients and professionals.
It is about the social and emotional consequences of living with long term conditions as much as the medical implications.
The most widely used Self Management Programme originated in the work of Professor Kate Lorig at Stanford University in the 1980s. It was introduced to the UK by voluntary organisations, specifically Arthritis Care and later the Long Term Medical Conditions Alliance and has formed the basis of the Expert Patients Programme.
Key features:
It is time limited
Delivered from a manual by tutors also living with a long term condition
The aim is to increase self-efficacy
Skills based
Quality assured
Has a good evidence base
Course content:
Goal setting/action planning
Problem solving
Symptom management techniques
Fatigue management
Dealing with emotions
Communication
Medication
Healthy eating
Using community resources
It is a course designed for anybody with a long term condition, whatever that condition is. It can work with groups of people with one condition, or groups of people with a mixture of conditions.
‘Expert Patients usher in a new era of opportunity for the NHS’ Liam Donaldson, Chief Medical Officer, BMJ.
Key features:
National programme
Pilot self-management programmes throughout NHS
Run by NHS employed trainers
Courses delivered by people with experience of living with chronic conditions
Evaluated
From a very low level in 1999
now:
Greater capacity (1000+ courses, 12000+ participants, 600+ trainers, 98% of PCTs have provided courses)
Delivery by EPP, delivery by Voluntary Sector Organisations, delivery in partnership
Accepted as part of services for people with chronic conditions
Participants in EPP courses:
10% more take medicine as prescribed
30% feel better prepared for consultations with care professionals
30% showed significant reductions in feelings of depression
30% felt they had more energy
20-30% felt pain, breathlessness and tiredness less ‘intense’
30-50% felt more confident they would not let pain, breathlessness, tiredness or depression interfere with life
9% fewer visits to GPs
6% fewer visits to A and E
9% fewer visits to outpatients
15% increase in visits to pharmacists
This supports evidence gathered over many years in more than 20 countries.
There has always been a great deal of self-care and self-management in HIV
Programmes run by a wide variety of HIV organisations are self-management orientated
In the UK there has been experience of running the PSMP for groups of people living with HIV
The PSMP is a specific intervention based on the Stanford CDSMP. It originated in the mid 1990s and was first used in San Francisco .
It is similar to the CDSMP in that it concentrates on raising participants’ confidence, changing beliefs and behaviours, however it is a week longer to allow for:
Additional material on HIV specific treatment/ medication issues
Discussion of sex, intimacy and disclosure
It has been introduced to the UK over the last couple of years. Work has been done to edit the programme to make it appropriate to UK circumstances and it has been cross referenced to authoritative material produced by the National AIDS Manual (NAM). Regular programmes of courses are being run in parts of London , to date the only PSMP course outside of London have been in Manchester .
To date there is little detailed research on this UK experience, however a 1997 study in the US (Gifford) showed:
Improvements in ‘symptoms’ including negative emotional and social effects
Improved adherence/HIV suppression
Matt then talked to the group about his own experience of attending a PSMP as part of the Living Well project in London and the positive impact it had made on his life. Since attending he has trained to become a course tutor himself.
The ideas of self-management courses were very well received and participants wanted to know how they could get on one. There was an acceptance that outside of London or Manchester the route may have to be through the non-HIV specific services. Most people seemed OK with this and expressed the view that they could see how important it was to share in the experience of all people with long term illness. Naturally there was some apprehension about adventuring out into the non-HIV world, but at least confidence is growing.
Self-management programmes are a means to learning tools, techniques and attitudes which help people to get the most from life regardless of their condition
There is widespread support for and consensus behind the inclusion of self-management programmes as part of services for people with all long-term health conditions.
For people living with HIV the ‘Positive Self-Management Programme’ has great value
The ‘Positive Self-Management Programme’ should be promoted to people living with HIV
More courses should be provided, particularly outside of London and Manchester
This workshop was evaluated by 59 people. There was a wide age range, the youngest participant being 24 and oldest 67. The average age was 40
Gender
34 male, 24 female, 1 not stated
Ethnicity
32 white, 17 black African, 7 not stated, 3 other non-white
Sexuality
29 heterosexual, 26 gay, 3 bisexual, 1 not stated
Employment status
34 not employed, 15 full-time, 6 part-time, 4 self-employed
Usefulness
Very useful |
Useful |
Not useful |
53%(31) |
39% (23) |
8% (5) |
34 people set themselves action points.
Wanting to enrol on a self-management course (47%)
Enrol on ‘Expert patient programme’
Enquire if courses available in Wales
Ask Body Positive about 'expert patient' scheme
Personal action (38%)
Take greater care of myself
Positive thinking
Take charge of my life
Getting involved (12%)
Try to start patient expert group in Scotland
Participate in tutoring for living well programme
Arrange visit to London re own work
And the session clearly did not work for this individual (3%)
Not waste my time on things like this in future
I’m doing the EPP course in Bristol
I’ve already taken action and done the EPP course
This was only relevant to people able to go to a London venue
Move on to Managing Your Work