'The surgeon cut off my leg but he made me a complete person'

In his first - and last - interview, Kevin Wright, the man who persuaded a Scottish surgeon to amputate his healthy leg, tells his incredible story to Health Editor Pennie Taylor

KEVIN Wright knew what he needed from the age of eight. That was when he was first aware of his pathological desire to lose his left leg. "I just didn't want it. It didn't feel a part of me," he says. "I didn't understand why, but I knew I didn't want my leg."

Almost 30 years later his wish was granted, thanks to a Scottish surgeon who was willing to risk international notoriety to put Kevin out of his intense emotional pain.

Since it was unexpectedly announced last week, the case has attracted worldwide interest because there was absolutely nothing wrong with Kevin's lower left limb. He just knew it had to go. "By taking my leg away, that surgeon has made me complete," he says.

The operation, which was performed by Robert Smith at Falkirk Royal Infirmary in September 1997, was both a clinical and a personal success. "Of course I am not a different person now, but I might as well be," says Wright. "I have happiness and contentment and life is so much more settled, so much easier."

From the moment news of his voluntary surgery broke on Monday, Wright's Essex home has been besieged by the media. Tabloid hacks interviewed colleagues and neighbours, but dug up nothing more revealing than the fact that he does not have the disabled sticker for his car to which he is entitled. But last night, as his 21-month- old son Stephen played in the background, Wright gave his first - and, he insists, his last - interview on the subject of his amputation and the Body Dysmorphic Disorder that caused it.

Speaking about it is obviously not easy for him to do, but he hopes it will end some of the more prurient speculation that much recent coverage has inspired.

Wright always knew that the way he felt about his leg was something he ought to keep secret, and as a child he did not share his thoughts with anybody.

"I knew I couldn't be the only one to feel this way, but I couldn't find anything to help me try to understand it," he says. "It really wore me down. I was so desperate for help."

Despite the intensity of his antipathy towards his lower left leg, nobody realised how Wright felt until he was 28, and had been married to Susan, a midwife, for seven years.

He says she was "surprised but accepting" when he confessed, and that she gave him the confidence to work up the courage to seek professional help. However, instead of enlightenment he says he found blind ignorance. "I encountered some very short-sighted psychiatrists who didn't know what they were talking about. They threatened compulsory electric shock treatment and I had some nasty experiences with heavy prescribed drugs. But none of them touched the problem."

He was variously told he was "off his trolley", that he was paranoid and that he had dementia and delusions. "They were desperate to label me, but nothing fitted," he says.

As far as he was concerned, amputation above the knee was the only feasible option. He couldn't bear life with his leg intact - and confesses to having contemplated suicide when he could not locate a surgeon willing to remove it. "Few of the medical profession knew about it, and even fewer wanted to know," he says. "It was total blackness."

Some people call what he had Body Dysmorphic Disorder, a psychological condition where sufferers fixate on parts of their body and become convinced that they have to be changed. Nobody knows how many people are affected by it, but BDD has been estimated to be the reason for up to 7% of the plastic surgery more usually performed on noses, breasts and buttocks.

The accepted wisdom is that, because it is assumed to be a psychological problem, BDD ought to be treated without surgery. In some cases psychiatrists claim to be able to alleviate the condition with psychotherapy. But that had no effect on Wright, who says he was eventually "palmed off" with Prozac.

To Wright, his distress was horribly real. The fact it attracted repulsion from those he approached for help intensified that. Although what he was requesting was not illegal, nobody would refer him to an NHS surgeon, and few private surgeons were willing.

"I just wanted someone to recognise that I had a problem," he says. "I hoped to spark their interest. But there wasn't much."

In 1995 he finally found a surgeon in England willing to perform a private operation. Then, three days before it was due to take place, it was cancelled. The hospital where it was scheduled had second thoughts.

That was Wright's lowest point. But shortly afterwards an acquaintance mentioned a surgeon in Falkirk he knew of who had a particular interest in amputation surgery.

Robert Smith, a general surgeon with a specialist interest in vascular surgery, usually strives to save the legs of people suffering the effects of diabetes and peripheral vascular disease, both prevalent conditions in central Scotland where he has worked for 18 years.

A necessary part of his job is performing up to 30 amputations a year. But he had never been asked to remove a healthy limb. "I obviously thought it was controversial, but I was intrigued," he says. "And yes, I was touched by his story."

He agreed to read the two psychiatric assessments and one psychological report on Wright that had been prepared by experts, indicating BDD. He had once come across a mention of the condition in 1969, when he studied psychiatry as a medical student in Edinburgh, but had not encountered it since.

Since then, Smith has read everything on the subject. Of particular interest was the work of an American neuro-scientist, Professor VS Ramachandran, author of the book Phantoms In The Brain.

Ramachandran is now exploring the thesis that severe expressions of BDD, such as that suffered by Wright, may be caused not by some psychosomatic illness, but by a functional disorder within the brain that erases the limb from the mind, making it feel an entirely unwanted object.

Like Wright, Smith is unhappy with the umbrella label BDD. He believes people seeking amputation of healthy limbs may have one of four different conditions which can be hard to tell apart. He classifies the first group as "psychopathic serial self-mutilators" - those who seek out amputations as the ultimate in personal gratification.

Secondly, there are those who try to have healthy limbs taken off so they can become more dependent on relatives or carers. The third group, informally known as "wannabes", may be classified as having apotemnophilia, which means they gain vicarious sexual pleasure from the fantasy of being an amputee.

Finally, there are what Smith calls the "need-to-bes" - people like Wright for whom the desire to lose a limb is an all-consuming part of life. "These are very distressed, troubled people, and for them surgery may be appropriate," says Smith. "I would not consider it for people in the other groups."

Smith and Wright finally met in London in early 1996. "I came to the conclusion I would like to try and help him, but not without great trepidation because of the legal, ethical and media interest involved," says Smith.

Before he agreed to the operation, Smith consulted a local psychiatrist who advised him against it. He took advice from the Medical Defence Union, MDDUS, which gave the matter serious thought, and then sanctioned the operation on the grounds that the surgeon believed it was in the best interests of his patient, and that every check and double-check had been made.

Eighteen months of serious consideration eventually led Smith to approach a nearby private hospital, King's Park - where he would have preferred to have done the operation. "I didn't feel I wanted to do it on the NHS. I felt it shouldn't be asked to fund it as there was no policy on it," he says.

He had the support of the private hospital's medical advisory committee, but the managers said no, fearing adverse publicity. As a last resort he approached the then medical director of the Falkirk Royal Infirmary NHS Trust, who considered all the documentation and consented. The chief executive at the time gave the final sanction. Smith recruited a surgical and nursing team within the Infirmary. They were all informed of the operation they were about to perform and were willing to help.

Finally, on September 16, 1997, Wright lost his leg. The operation cost him #1400, which paid for the costs of theatre time and a five- day hospital stay. Smith waived his fee. "Kevin is now a happy man," he says. "I have no regrets about it."

Last year, Smith was approached by another "need-to-be", a German acquaintance of Wright. "I felt considerable trepidation, but that was an easier decision to reach," he says. Once again, the trust's medical director agreed - only this time the patient paid #6600.

By the time the third prospective patient, an American, turned up last year seeking voluntary amputation, the trust had a new board of managers. The new chief executive referred the decision to the chairman, who had been unaware of the previous two operations. He put an immediate ban on the surgery and ordered an internal ethical committee inquiry. Its report has concluded that while there was no impropriety in the decisions to proceed with the first two operations, any more would have to be closely considered by the whole board before they could be allowed to proceed.

In the immediate aftermath of last week's revelation that the amputations had taken place, trust chairman Ian Mullen declared that no such operation would happen again in his hospital. He was responding to the outrage of local MSP Dennis Canavan, who called on the Health Minister to ensure that it would never arise anywhere in Scotland.

"What has bugged me most is the ill-informed comments of some of the MSPs. I'm sure they'd never heard of BDD till half an hour before, and it took me a year and a half to decide," says Smith. "You can't just refuse people unless they are fully and carefully assessed. The surgery is bagatelle compared to that."

His greatest concern is distinguishing between those with group four BDD - the "need-to-bes" who always complain about the same limb at the same level - and those with group three BDD, who fantasise about amputation. The areas they typically take offence to tend to vary, which increases the chances of the condition resurfacing even after one limb has been removed. "It is, however, possible to tell the difference with close questioning," says Smith, who believes a great deal more could be done to improve diagnosis.

He is working with a psychoanalyst, preparing an academic paper for publication in a medical journal on the decision-making process involved in agreeing to operate under such circumstances, and would like to see more operations for need-to-bes taking place. "There are not large numbers of people out there who might benefit," he says. "But there will be some very troubled people, and at the moment the NHS is failing them."

He hopes the "yuck" factor associated with such surgery will one day fade. "The reaction to operations like these is the same as it was 30 years ago to gender reassignment," he says. "That is accepted now in rare cases, and in my opinion so should this be."

BDD typically emerges pre-teen, and Smith is concerned that there may be children in Scotland as young as four and five living with the secret loathing that so blighted his patients' lives. "They are so embarrassed and so ashamed, and they think they are the only person in the world who suffers from it when they are not," he says. "Surely they deserve help, not derision?"

Wright too believes that more ought to be done to bring BDD, in all its forms, into the open. "Some people start to get better as soon as they know they aren't the only one," he says. "That in itself may be enough to help them."

Others, though, are more extreme. For them, only amputation will suffice - and if they cannot get help to do it properly, they may seek relief in other ways. "I am aware of a number of people with the condition who have died as a result," says Wright. "Some simulate accidents, while others turn to back-street operators. It is truly tragic that they are ignored by the medical profession."

Much of the commentary surrounding Wright's case has lingered over the more voyeuristic aspects of BDD. There are a few internet websites for people seeking amputations - or amputees - for sexual gratification, and some are distinctly challenging in their content. Pictures of women and men with missing limbs, posing provocatively, have been condemned as pornographic.

Wright describes the extreme sites as "appalling". For eight years he was involved in the running of a support group called OverGround. Among its other work it had a website that stated it provided "support and information for those who are attracted to others with physical disabilities, and for the people to whom we are attracted".

That has led the tabloid press to question his respectability and motives for wanting the amputation, but Wright vehemently defends the work of OverGround. "It is an information site that has been way ahead of the medical publications on BDD," he says. "It is a meeting point, not a dating agency."

The site, now closed, did not display pictures - but it did carry lonely hearts advertisements.

Wright can understand the need for people with BDD to find sympathetic support from others sharing the same experience. "These people are not weird freaks - they are just very unfortunate," he says. "Some are looking for friends, others for partners. So what? Sexuality is part of personal identity after all - able-bodied or not."

A new openness about BDD is what Kevin Wright is prepared to speak out for. He wants to see informed debate taking place, and he is bravely starting it. However, he sincerely hopes he will soon be left alone to get on with his long-desired normal, happy, family life.

"I have not regretted the operation one bit," he says. "I don't want to think of what I'd have been like without it."

Copyright 2000
Provided by ProQuest Information and Learning Company. All rights Reserved.