The government has promised a boosted role for 'expert patients' in decisions about recommended treatments.But the working group on CFS/ME has shown that getting agreement between patients and professionals is no mean feat. Lynn Eaton reports

Published: 24/01/2002, Volume II2, No. 5789 Page 16 17

The government says it wants patients to become 'experts' whose views on their condition are taken seriously. It even wants them sitting alongside clinicians in working groups, advising on treatment guidelines. The concept of patient involvement may sound attractive, but how do you get the group dynamic to work? How large is the gulf between the professions and patients - and are they even speaking the same language?

These questions must have haunted Department of Health officials as they struggled over the publication of an independent report on myalgic encephalomyelitis, or chronic fatigue syndrome, commissioned three years ago by the then chief medical officer, Professor Sir Kenneth Calman.

The report was originally intended to provide 'best practice guidance for professionals, patients and carers to improve the quality of care and treatment', but was eventually published as a report to 'help improve' diagnosis, care and treatment. Publication was delayed after four clinicians on the working group resigned over the final version and two patient representatives refused to sign it.

The clinicians wanted the psychosocial side of the condition to be given greater emphasis and were concerned that 'pacing' - patients limiting their activities according to the day-to-day severity of their condition - was included as a form of treatment.

Research into pacing is limited, though it is recommended by many patient groups and some doctors.The patient representatives who refused to sign objected to the inclusion of graded exercise gradually building up activity levels as a treatment option.

Even the naming of the condition has met controversy in recent years. The compromise, CFS/ME, has followed fierce debate about whether the definition of ME - muscular pain and brain inflammation - matched the less specific spectrum of symptoms attributed to CFS. Clinicians have tended to prefer CFS, whereas many patient groups prefer the definition of ME: some believe that 'fatigue' does not adequately reflect the levels of exhaustion involved.

One of the patient representatives who felt they could not sign the CFS/ME report was Simon Lawrence, co-ordinator of the 25% ME group for those with severest forms of the condition.

'ME was a tough one, probably because there was the difficulty of it getting the recognition it deserved, ' he says. Though he recommends that other patients get involved in similar initiatives, he found the experience difficult - partly because he had to travel from Scotland for meetings in London and was often hampered by the severity of his condition.

'Because there was such a wide cross-section of experts, it became very frustrating, ' he adds.

Clinicians would differ over what were and were not symptoms of CFS/ME. 'You feel powerless.'

Dr Peter White, a psychiatrist at St Bartholomew's Hospital, London, who specialises in cognitive behavioural treatment for CFS/ME, was one of the four clinicians to resign. He recognises the importance of doctors taking account of patient experience but is worried about how this works at planning or guidance level.

'There, you have to be a little more careful, as the working group found to its cost, ' he says.

'You need to have a clear idea of the remit and not go beyond that.

'If I am ever asked to do this again, I would like to know from the beginning how the chair is going to handle conflict. If they hadn't got a formula, I probably wouldn't go on the committee.'

The report's chair, Professor Allen Hutchinson of Sheffield University's School of Health and Related Research, favoured open consensus: public reiteration of what had been agreed and resolved and, where that was not possible, agreement to disagree.

He admits that his task was 'challenging', and suggests that the high ratio of patients to professionals on the group played a part.

There were 10 patient or carer representatives over the group's lifetime, as many as there were professionals.

The National Institute for Clinical Excellence has also been grappling with how to represent the patient view on its various clinical guidance committees.

CHI is funding the national guidelines and audit patient involvement unit, based at the College of Health, to do just that.

Director Marsha Kelson helps find people to sit on the committees and tries to ensure they are properly prepared for the job and know what to look out for.

She recommends having two or three patient representatives on a group so that they can support each other. The other thing, she says, is choosing people with a network to fall back on and whose opinions they can take into account. 'It is not very helpful if the representative just says, 'When I went into hospital this is what happened to me'. They need someone who has the condition but who also has an understanding of the views of other people and of medical and scientific terms.'

One of the NICE guideline groups is looking at treatment for schizophrenia. The National Schizophrenia Fellowship has a representative on the group, one of three service user members in all.

'Everyone involved will be learning as they go, ' says Gary Hogman, NSF head of policy and campaigns. 'Academics and researchers are used to meeting regularly and thrashing out ideas.

They will have their own agenda.'

Though some patients might be able to hold their own in such a group, they may not always be able to reflect the views of others, he says. 'You have to be a representative, not someone who is saying, 'I have got my own agenda'.

'One thing that strikes me is that there is nowhere near the amount of this kind of people to sit on the groups that are asking for them.'

Mr Hogman wants more government research funding to go into supporting local networks for people advising committees.

But the thorniest question of all is what to do if clinicians refuse to accept patient evidence because there is insufficient scientific research to support it. NSF, for instance, surveyed members in 2000, in conjunction with Mind and the Manic Depression Fellowship, about the effects of their medication. But it does not yet know if the research, which it says is statistically sound, will be medically acceptable to NICE.

The lack of acceptable research over pacing proved a major stumbling block for the CFS/ME working group. Though 89 per cent of the 2,000 severely ill patients surveyed said it had helped them, some of the clinicians could not accept this as sufficient evidence.

Committee chair Professor Hutchinson is stoical: 'Somebody has to take a scientific view, ' he says. 'This is meant to be a science-driven NHS.'

Ms Kelson takes a middle line: 'If the patients say something works, we would expect the guidelines group to at least look for the evidence.What is problematic is if the evidence is not there.The way NICE is thinking now, they may well flag up the fact that patients have raised this issue, but say they couldn't find any evidence that it would be held up for future research.'

But Mr Hogman of NSF remains cynical: 'If you are going to have a patient-centred NHS, they have to recognise the kind of evidence patients themselves are coming up with.'

A report of the CFS/ME Working Group , January 2002. www. doh. gov. uk/cmo/publications. htm The Expert Patient: a new approach to chronic disease management for the 21st century .www. doh. gov. uk/cmo/ publications. htm