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‘The Programme is about creating a partnership
between doctor and patient, and giving patients the skills to become equal
partners and take over some of the management of their own illness.’ That’s
the way Liam Donaldson, Chief Medical Officer for England, puts it. He is
strong on words such as ‘empowerment’ and ‘control’ and ‘enhancement of
quality of life’.
My first reaction, when I hear them is: could
this be just another strategy to cut costs? My second is: will doctors feel
threatened by patients who consider themselves experts?
But before I answer, let me tell you what it
means to be an expert patient.
The EPP is about self-management of
long-term health conditions. For twenty-four years I have been actively
managing my own condition – scleroderma and Raynaud’s. But a
progressive disease inevitably means increasing medical intervention. I
should have found the interaction with the panoply of the health service
easier with use and familiarity. But I didn’t. There were adverse side
effects of various kinds, including a severe sense of humour failure and a
serious attitude problem towards medics. My treatment became a matter of
coping or ‘putting up with’ rather than managing and being in charge.
The six-week EPP course was like manna from
heaven. For a couple of hours every Saturday morning eight of us were all in
the same boat. Not sitting around bemoaning our fate but brainstorming,
problem solving, swapping strategies. My favourite is ‘I don’t think so’
said in a calm assertive manner. It’s being saved for the next time I’m
denied a much-needed lung function test and told to take Prozac. The last
time it happened, my tears of frustration had been instantly diagnosed as
depression.
I don’t think so.
We were a mixed bag from different
backgrounds and living with different conditions such as emphysema, diabetes
and stroke, etc. What we had in common were fatigue, frustration and not
being taken seriously. Dealing with the uncertainties of a progressive
disease, waiting for appointments, results, and just getting to grips with
the whole medical profession were experiences shared with tears and
laughter.
Informal, but highly structured, the course was
delivered by two skilful tutors also with long-term conditions, who pushed
us in the direction of possibilities, of a shift in attitude, of the
differences we could make in our lives.
We discovered new ways of relaxing, and of
eating (a diabetic should never go into a baker’s on an empty stomach). We
made realistic ‘action plans’ to swim and walk and dance a little. And we
looked at better ways of communicating with doctors and family.
Given that
we could now call ourselves experts, what have we gained?
For all of us,
sharing experiences was comforting and affirming.
We have learned
to feel more in control of our symptoms and
to feel OK
about making time for ourselves.
One of our group, Susan, now feels able to put
her health first, particularly at work, and has trained to become a tutor
herself.
Mary is more able to accept ‘where you are’ and
is doing various sorts of relaxation, exercise and meditation.
Davy has found that exercise ‘helps the pain’
and that visualisation ‘keeps your mind off being depressed’.
For me, ‘coping’ has gone out the window and
‘management’ flown back in.
I have re-discovered my assertiveness skills and
communicate much better with health professionals. Getting weepy or
aggressive stays on the back burner – mainly. I have learned the importance
of describing symptoms accurately.
Will the scheme cut costs? Possibly, but only
through fewer return visits as a result of better communication between
patient and doctor, and a greater sense of well-being.
And, I can honestly report that my doctor
doesn’t appear at all threatened.
Patients can refer themselves to The Expert
Patient Programme through their local Primary Care Trust. It is free of
charge and the plan is to make it an integral part of NHS provision. Rosie
Winterton, MP assured us in October, 2003 that ‘self-care is not a covert
form of rationing…’
www.expertpatients.nhs.uk
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I
am well on my way to becoming an expert and recently attended a reunion of
experts. We had done the training, put it into practice and were there to
pat each other on the back. 
