Patient, heal thyself

A programme is training patients to become experts in managing
their own illnesses. Anabel Unity Sale
reports on how it is helping them improve their lives.

Who is the more expert in dealing with a long-term medical
condition – the individual living with it or their doctor or
social worker?

While health and social care practitioners may be well informed and
better educated, the real expert is often the patients
themselves.

The government’s pilot expert patients programme (EPP)
started in May 2002  and trains people with chronic medical
conditions to manage their illnesses more effectively (see box).
Last month, health secretary John Reid said that the needs of these
clients had been raised at every health meeting of the
government’s Big Conversation initiative over the past seven
months. The government says it is committed to developing expert
patients and is planning to roll out EPP across England by 2008. By
then every individual in the country with a long-term illness who
wants to become an expert patient should be able to train to do
so.

David Pink is chief executive of the Long-term Medical Conditions
Alliance, an umbrella organisation representing 110 agencies. He
says: “Helping prepare and train people for their life with a
condition may be one of the most valuable things public services
can do.” Learning to self-manage their condition gives a
person back the control they often feel they have lost, he
adds.

Guildford and Waverley Primary Care Trust was involved in the
Department of Health’s first wave of EPP pilots. So far it
has run three expert patients courses, training 42 people, and
plans to operate four more this year. Community matron Wendy
Panting says: “Even if patients make a small change, like
learning a new coping strategy or managing their medication, they
feel more involved in their condition.”

Multiple Sclerosis Society head of education Lynda Finn echoes this
view. She says: “We can’t make multiple sclerosis go
away but we can give you the techniques to manage the pain or
frustration.” The Multiple Sclerosis Society has run 30
self-management courses since 2001, training 360 people. Finn
firmly believes that individuals who go through such training
“relate differently and more effectively as a partner”
to the professionals who work with them.

“Social care professionals will find their clients
transformed through self-management courses,” she adds.

But is the very name of the training – “expert
patients” – a hindrance? Are health and social care
staff being intimidated by the thought that their patients know
more than they do? Certainly, this is a concern raised by those in
health and social care. Pink says: “Expert patients cause
service providers to think the person is going to walk in with
100-pages printed off the internet. It’s not about being an
‘expert’ on the condition but how to live with
it.”

Arguably, expert patient training may appear to simply be a
formalised version of what many social care practitioners have
helped their clients achieve for years. However, the
government’s decision to broaden out the provision of the
training programme across the NHS over the next three years clearly
shows its desire to involve more staff and agencies.

Expert patients training should not just be regarded as something
health professionals know about despite its NHS-setting, says
Panting. “We can’t separate health from social care as
one impacts on the other. We need to move away from the view that
‘you are social care and you do that’ and ‘we are
health and we do this’.”

She adds that the further involvement of social care will help
identify service users who may benefit from the training. “We
may pool resources with PCTs and voluntary organisations to
continue with the training.”

Hundreds of thousands of people in England with long-term
conditions could become expert patients. There are an estimated 8.5
million people in the UK with some form of arthritis and 3.4
million people in the UK are affected by asthma. So, is there a
danger that expert patients training is a backhanded way of
reducing social care services to those with chronic conditions?
Pink does not believe the EPP has evolved for cost-cutting
purposes. “The government may want to reduce some health and
social care costs but the training is not designed to do that and
the evidence isn’t strong that it has,” he says.
“People who have long-term conditions don’t want to get
worse, but to manage their lives better, which in turn will reduce
some costs.”

Health care professionals see a person with a long-term condition
in medical terms. Social care staff do the opposite, looking at the
individual’s other needs. Expert patients’ training
takes a holistic approach and, for once, includes the service user.
CC

Expert Patients Programme

The EPP deals with common chronic complaints such as
arthritis, asthma, back pain, diabetes, epilepsy, heart disease and
multiple sclerosis. The first wave of the EPP pilots started in 26
primary care trusts (PCTs) across England in May 2002. Most PCTs
are coming to the end of the three-year pilot, with many planning
on making the courses a long-term fixture in the future.

By May 2004, about 300 PCTs were running the courses or were
committed to joining them. More than 1,000 free courses have helped
train about 13,000 people. Courses last for two and half hours and
are run for six consecutive weeks by two volunteer tutors with
long-term medical conditions. Groups contain between eight and 16
people. Sessions cover how to break the symptom cycle; managing
pain and medication; communicating with health care professionals
and relaxation. EPP is based upon the chronic disease
self-management program developed at Stanford University,
California.

‘Believe in yourself’

Rob Cremona (pictured) has been told he was going to die on four
occasions and was once given the last rites. The
48 year old has experienced serious medical problems ever since his
kidneys failed when he was 20. In 1977, he was diagnosed with
Goodpasteur’s syndrome and spent 24-hours a day for a year on
a life-support machine in a London hospital. Originally from a
Catholic Maltese family, Cremona put off having a kidney transplant
until 1981 because his mother was praying for a miracle.
His first kidney transplant lasted just 18 months and was followed
by a second one in 1983 and a third in 1985, which lasted 10
years.

Since then he has had kidney dialysis three times a week.

In March 2002, Cremona suffered a stroke and, after a varied career
including being a professional musician, a financial manager and a
podiatrist, had to give up paid work.

He heard about expert patients from his GP in January 2003.
“At first I pooh-poohed the idea and thought
‘What’s anyone going to teach me after having all this
for 28 years?’.” Despite his initial reluctance,
Cremona got a place on Guildford and Waverley PCT’s EPP the
following February and has not looked back. “It was amazing
from day one. The course brings everything together and does the
positive things a pill can’t do.”

One of the biggest things the course taught Cremona was to take
control of what he wants to do. Previously, he had struggled to
take part in family outings with his wife and three children
because he did not want to disappoint them. “Now I’m
much more assertive and feel a lot happier,” he says.
“We are all benefiting from that.”

After the second week on the course Cremona decided he wanted to
become a volunteer tutor and train other people to become expert
patients. Now he has helped lead two training courses and regularly
gives speeches to professionals and service users about his
experiences.

“The most important thing is to empower yourself because you
will feel stronger. If you believe in yourself then that extra
magic will make you go further,” he says.