Charities / Secret compulsion that wrecks lives: The Munchausen Syndrome Self-Help Group

WHILE the recent Beverley Allitt case has highlighted Munchausen's Syndrome by Proxy, less has been written about the syndrome itself. For Wendy Scott, founder of the Munchausen Syndrome Self-Help Group in 1982, and a past sufferer, it is a terrible fate: 'You don't live with it, you exist with it. It takes up your whole life and ruins it,' she says.

The syndrome, named after Baron von Munchausen who in the eighteenth century told wildly exaggerated stories of his army campaigning days, is a compulsive habit of seeking and often receiving medical attention for entirely fictitious diseases and ailments, or for self-inflicted injuries. 'I used to say I had terrible stomach ache and go to hospital. I knew that I wasn't ill, I didn't have stomach ache, I wanted someone to care about me and that was the only way I knew I could get it. On the whole, hospitals are caring, sympathetic places until they find out they have been conned,' Miss Scott says.

Sufferers have uncontrollable feelings of compulsion; no sooner are they out of one hospital than they start planning another visit. 'I thought nothing of discharging myself from one place - or being kicked out - and hitch-hiking 200 or even 300 miles, or even to Europe, to find a different hospital. It didn't matter where I was, what time of the year, I was always on holiday.'

One of the members of the self-help group travelled to the United States to go to two hospitals there. Another sufferer set herself on fire, and sustained terrible burns to get into hospital; previously she had specialised in ectopic pregnancies. 'She turned up in casualty on the first day of her period complaining of bad stomach ache, pointing to the right places and saying she had missed her last period. I suppose it lost its effect so she tried something more extreme.'

It took several years, and being sectioned several times in psychiatric hospitals, before Munchausen's Syndrome was mentioned to Miss Scott. 'If psychiatrists were really honest they would say they don't have the first idea why someone suffers from the syndrome, nor do they know how to treat it,' she maintains. When it was mentioned she realised, with relief, that she was not the only person with the problem.

The group has five regular members, two men and three women. Between 20 and 30 others contact Miss Scott when they cannot cope. The small numbers, she says, do not necessarily indicate that there are only a few sufferers in the UK: 'I think it is more common than is generally acknowledged but the nature of the illness makes it a secretive one.'

Because the members live so far away, self-help comes in the form of correspondence or telephone calls with Miss Scott, who says she was lucky enough to get out of the syndrome and considers herself in a unique position to help others. The turning point for her, 16 years ago, after being sent to prison twice for illegally obtaining drugs and board and lodgings, was realising she had to stop. 'What helped me stop was taking on some responsibility in my life. For me it was acquiring a beautiful tabby kitten.'

She discusses everyday, simple strategies - tailored to each individual sufferer - which might rid them of the syndrome; she admits they do not always work. 'I suggest they take one day at a time, even one hour at a time, that they find an interest in their life - I even threaten them with what might happen, prison, if they they are found out.' So far about 25 people have been helped by the group, although this is difficult to evaluate; one member has managed to keep away from hospital for 10 months and another for nine. 'It is excellent, I like to think it is because of writing to me,' says Miss Scott.

With no outside financial help - the group receives no grants and no membership fee is charged - and few resources, Miss Scott replies, by hand, to about 16 letters each week. Lack of money is the organisation's most pressing concern. It is time-consuming work, when one letter might take two hours to write, and expensive for Miss Scott who pays for telephone bills, stationery and stamps out of her own pocket. She cannot afford to print any leaflets, which would save much time. A third of inquiries are from hospitals and pharmaceutical companies; few, she says, realise that a stamped-addressed envelope is important to such a tiny organisation.

Both Mind and the British Medical Association refer people to the group, and Miss Scott gives talks about the syndrome to students at the psychiatric unit of the Middlesex Hospital.

For more information send an SAE to: The Munchausen Syndrome SelfHelp Group, 22a Tankerville Road, Streatham, London SWI6 5LL, telephone 081-679 4324.

This is the first in an occasional series of charity profiles on the Miscellany page.

(Photograph omitted)