Published: 30/09/2004, Volume II4, No. 5925 Page 30 31
A unique project that trains people with diabetes to teach self-management is superior to the expert patient programme, say supporters.But scepticism of such a nontraditional approach has hit take-up, reports Ann Dix
This is not the usual encounter between a doctor and his patients. But then diabetes consultant Dr Arun Baksi is not a standard doctor and these are no ordinary patients.
Sitting on the terrace of Dr Baksi's Isle of Wight home, boats bobbing gently in the harbour below, the atmosphere is one of congenial conviviality - rather like work colleagues on an away day.
It is an impression the group is keen to foster. For these are diabetes patients and carers who have gone through a rigorous learning programme to advise, support and educate others living with the disorder.
Dr Baksi first started his peer advisers programme in 1980, but 'no-one was ready for it'. It was only 20 years later, when patient empowerment became fashionable, that he saw the opportunity to resurrect it.
Since 2000 - one year before the launch of the government's expert patient programme - around 60 volunteers have completed the course. It involves a commitment of two hours a week for 18 weeks, followed by a 40-minute oral examination by doctors from the mainland who assess participants' knowledge and their suitability to be peer advisers.
'The whole idea was first to train people with diabetes to serve as educators on self-management, ' says Dr Baksi.
Peer advisers also learn to manage their own diabetes better, but 'this was always a secondary objective'.
'Second was to provide advice on a one-to-one basis for people with diabetes. And third was to equip patients to be effective campaigners and to sit on NHS and non-NHS committees.'
The government is saying it wants patients more involved in the planning and delivery of services, says Dr Baksi. But these patients are all tokenistic, he says, 'because they are uninformed patients. The peer advisers we have are highly informed'.
Dr Baksi is a tireless innovator - he won a Department of Health award for outstanding achievement last year and his pioneering diabetes centre at St Mary's Hospital, part of Isle of Wight Healthcare trust, is named after him. As he wryly remarks 'that doesn't usually happen until after you are dead'.
He started the programme because he 'felt that people with diabetes are probably better placed to understand a fellow diabetic', and also because he sees it as the only way forward for the management of chronic disease.
Peer advisers 'can give patients what we [health professionals] have not the time to give - that is social support, advice and explanation that reinforces professional advice. Patients often walk out of a consultation feeling they do not understand'.
He also sees them as crucial to delivering structured education programmes which, to be effective, need to be at a time and a place convenient to the patient.
'This is impossible to do with health professionals because out-of-hours work is not the norm, ' he says.
But how does this sit with the government's expert patient programme, a generic course aimed at helping all patients with chronic disease cope better?
'The expert patient is definitely helpful to people who have a chronic disease which gives rise to pain or affective conditions like depression or anxiety. But it is no good for people with chronic diseases like diabetes where pain is not very significant to their condition, ' says Dr Baksi. 'It will not enable diabetic people to improve their self-management skills.'
The peer adviser course is designed specifically for people with diabetes and aimed only at those 'who are going to be educators, advisers, campaigners and so on', he explains. 'Another difference is the expert patient does not have a formal evaluation, whereas we do.'
Adviser Gay Patton, an ex-nurse with diabetes, says: 'The expert patient gets your head round having a chronic disease and coming to terms with it, but it doesn't actually help at all with managing your specific disease, and our programme is all about that.
'The education for a lot of diabetics is so poor that they do not understand how poorly they are doing. They just think they need to swallow a few tablets and maybe make minor adjustments to their diet. They do not see themselves as having a chronic illness.When they get all the very nasty complications that go with diabetes it comes as a horrible shock.'
Daphne Williams is a carer and another ex-nurse. She is also secretary of the local branch of Diabetes UK and of the diabetes network and joint implementation committee of the national service framework for diabetes.
'We do not think much of the expert patient programme, ' she comments. 'The government is pushing for the expert patient to get more involved, but there is nothing to tell them how the NHS works... You are just there to fill a number and not to achieve anything at all on behalf of the people you represent.'
But while Dr Baksi has had little problem convincing patients to become peer advisers, take-up of the service has been disappointingly low.He estimates that around 30 patients have used the service so far. It requires an 'enormous culture change', he admits.
The main problem is gaining acceptance among health professionals. Peer advisers have posted flyers, held meetings for primary care and visited GP practices to promote the service, but patients are still not being referred. 'We are seen as a threat by the medical profession, ' believes peer advisory group chair Graham Hall, a retired sea captain.
Patients may also need convincing. 'Many are in denial or do not really know they need help, ' says Ms Patton.
And as Mr Hall points out, there can also be a tendency for some patients, particularly the older generation, 'to think of us as sub-standard, a substitute for the real thing'.
Some improvements have been made. In the past, peer advisers had to wait for patients to contact them because of clinical governance rules. This has been solved with the help of a new consent form, but the problem, says Dr Baksi, is that it is not being used.
Take-up of the structured education programmes has also been poor. A new curriculum has now been agreed between peer advisers and health professionals, comprising five two-hour sessions, plus one tailored to patients either on tablets or insulin. These will be in the evenings with the offer of free transport, and patients who decline will be asked for their reasons.
Research after the first peer advisers' training programme showed significant improvement in their knowledge, sense of well-being, and self-care ability and adherence. Patients also became more active in campaigning and committee work. Dr Baksi is now looking for funding to research how peer advisers perform as educators compared to health professionals.
Peer advisers are helping train new recruits and there is interest from other areas of the country. But ultimately, the future of the programme will depend on whether health professionals use it.
One obstacle is a lack of funding. Because it doesn't fit into the expert patient initiative, Dr Baksi has had to 'beg, borrow and steal' to keep the programme going.
But Arun Baksi diabetes centre clinical diabetes services co-ordinator Pat Wilson fears it will founder without the money for a full-scale advertising and education campaign. 'Peer advisers are educated to a high level. They have the empathy and the experience to help patients get through, ' she says.
'They are also a hefty resource because they can free up health professionals' time, when the increase in diabetes means resources for diabetes are not keeping up with demand.We now need to get GPs to understand, acknowledge and refer.'
A course developed by an Isle of Wight diabetes consultant teaches patients to instruct other patients on self-management of the condition.
Supporters say the training is more relevant to diabetes than the expert patient programme.
Health professionals'wariness of the scheme has taken its toll on take-up of the service.
To contribute articles to HSJ's clinical management section, please e-mail ann. dix@emap. com
'I am appalled by my ignorance before the course. . .'
Graham Hall, 65, retired sea captain.Diagnosed with type-2 diabetes 15 years ago.
'I became a peer adviser because I felt it was time to put something back into society, but it has also given me more confidence in controlling my condition.
'I am appalled by my ignorance before the course. I thought it was a matter of taking a couple of tablets and I would be all right. I didn't appreciate the seriousness of the complications of diabetes. No-one explained it to me.
'Now I am a total convert to self-management and education.
People with chronic disease need to take responsibility for themselves. They have a role to play in their own care. It is not a case of expecting someone else to do something about it.'
Fred Hatt, 53, health and safety adviser.Diagnosed with type-2 diabetes 12 years ago.
'My main motivation was to put something back into life. The biggest challenge was absorbing the information and then having the confidence to use it to help others.
'We try to get across to the people who come and see us that You have got a stark choice: a short uncomfortable life or a longer life with much more quality.
'I've done three formal consultations, which is insufficient. It is a bit of a shame really because the whole group is an underused resource.
There are one or two advisers who I feel are disenchanted because they haven't been used.'
Gay Patton, 55, ex-nurse.Has had type-2 diabetes for 15 years.
'My reasons for becoming a peer adviser were initially selfish. I was afraid of complications and was very aware that diabetes had moved on since I had been a nurse - although I was amazed at how much.
'I teach anatomy and physiology on the peer adviser courses, which has been quite a challenge. I do not want the responsibility of being a health professional any more. But on the other hand I do think I've got something to give.
'Managing your diabetes is not brain surgery. If I can do it, anybody can. It is just about getting the motivation and the education. One without the other is not much good.'
Paul Jacobs, 44, owner of picture-framing business.Diagnosed with type-1 diabetes when he was 20.
'When I was diagnosed I was lucky to be advised by a couple of staff nurses who themselves had diabetes.
That is something that has stayed with me. There was an empathy there.
'I haven't done exams since I left school and I found the assessment terrifying. It was sometimes hard to know where the questions were leading, but in the end they just want you to be honest.
'I have talked to people informally, but I haven't had a consultation. I get the feeling that there is a lot of suspicion among health professionals. Over time that will change, but keeping the momentum going is difficult for most people. I have gained a lot of new friends and colleagues, but I do feel frustrated that we can't get things going on a grander scale.'