Invasion by organ snatchers

Women are fighting back against doctors who perform unwanted surgery. Esther Oxford reports

The last words Lorraine Pearce heard before she slipped under general anaesthetic were: "I'm sorry, but the patient's blood test results have not come through". Mrs Pearce, then 37, was being wheeled into surgery to have laser treatment to the neck of her womb. She wasn't sure why. But she knew it was something to do with an abnormal result from her cervical scrape.

Two weeks after the operation Mrs Pearce discovered she was pregnant. She was delighted. But three days later the bleeding started. It went on for several days and eventually Mrs Pearce was taken to hospital. A young doctor there broke the news: the body of the foetus was "coming away in pieces".

He explained: she had actually had a D and C (Dilatation and Curettage), a procedure in which the contents of the womb are "cleared out". The Harley Street surgeon decided to waive his pounds 1,000 fee in view of the delicate situation. Mrs Pearce, now 44, laughs bitterly as she recounts this. As if pounds 1,000 could compensate for the loss of a child. She is thinking about pursuing the matter through the courts, but is disillusioned by the response: "If I was a member of the Royal family people would care. But I am Mrs Nobody, Mrs Ordinary from Milton Keynes."

Mrs Pearce is not the only woman who is fed up with the "cavalier" treatment of her reproductive system. Barbara Whiten, a 38-year-old college lecturer from Kirkby in Ashfield, Nottinghamshire, who lost her 11-week-old embryo during a hysterectomy, is also angry. Her surgeon, Reginald Dixon, a consultant obstetrician and gynaecologist at King's Mill Hospital, Sutton in Ashfield, Nottinghamshire, has recently been found not guilty of unlawfully procuring a miscarriage.

Mr Dixon claimed that he had "acted in good faith" when he terminated Mrs Whiten's pregnancy in March 1993 while she was under general anaesthetic. He says he took into account Mrs Whiten's age (35), her mental health (she had attempted suicide the year before), and the fact that she already had two step-sons, before making his decision.

But Mrs Whiten says Mr Dixon had been "callous" to deny her one chance of motherhood. She had tried to have a baby for years before being told she was infertile. "I would love to have had a baby", she said before the trial. "He took that decision away from me. He had no right to do that." She feels as if she was treated as "a piece of meat on a slab".

Barbara Whiten and Lorraine Pearce are just two of a growing number of women confronting the gynaecologists they believe have maltreated them. In July Jackie Bartley, 38, a teacher from south-east London, accepted pounds 32,000 in an out-of-court settlement of her claim that she had not consented to the removal of her womb and ovaries. In August Frances Henton, 50, from Salisbury, won a five-figure sum in a legal action against the surgeon who took out "my centre, my womanhood" (ovaries, uterus, cervix) without her permission. In September Vanessa King, 42, of Luton, saw her surgeon struck off the medical register for removing her "perfectly normal" ovary despite instructions that it should not be touched. Last month Rita Walker, 32, from Middlesborough, won pounds 22,500 damages after her healthy ovaries were removed without her consent during a hysterectomy.

Then there are the two women who, inspired by Barbara Whiten's tenacity, have decided to take legal action against King's Mill Hospital, Sutton in Ashfield. Both Amanda Flewitt, 30, of Chaddesden, Derbyshire and Jane Henson, from Mansfield, Nottinghamshire, claim to have had unwanted abortions carried out during routine surgery. The hospital is contesting both cases but has since changed its procedures before gynaecological operations.

The number of complaints from women has increased so dramatically that the Law Society is now setting up a specialist panel of medical negligence practitioners to provide the public with access to solicitors who are proven to have a track record and experience in the medical field. "I would say that the number of cases involving unnecessary surgery or removal of organs without consent has doubled in the past year", says Gillian Gadsby, a solicitor from Chelmsford, Essex, who specialises in cases involving gynaecologists and obstetricians.

Ms Gadsby is dealing with 80 cases. The company she works for takes on two or three new cases of medical negligence a week - many on a "no win, no fee" basis. She wins about 80 per cent - but she screens her clients before accepting them. "We reject about 50 per cent of our applicants", she says.

Just under half the complaints concern hysterectomy surgery and related problems - damaged bowel, punctured bladder, failure to diagnose pregnancy before hysterectomy, removal of organs without consent. The rest are mainly concerned with pregnancy or childbirth: trauma (often brain damage) to the baby during delivery, damage to the mother during childbirth (to the anus, for example), stillbirths due to negligence during labour, failure to diagnose abnormalities during pregnancy.

But Ms Gadsby's biggest concern is with intimidation: "Women are being frightened into having surgery", she says. "Some doctors are scaring women into having their womb and particularly their ovaries removed by telling horror stories about getting cancer." Then there is the issue of consent: "Surgeons are too ready to remove reproductive organs without telling the patient", Ms Gadsby says.

Certain surgeons argue that it is best to remove the ovaries during pelvic operations, to help prevent ovarian cancer later in life. The disease kills 5,000 women a year; it moves quickly and is hard to detect, hence its nickname The Silent Killer. "In my private practice I advise women over the age of 45 to have their ovaries removed if they are having a pelvic operation anyway. But this is clearly done with their consent," says Robert Kingston, consultant gynaecologist at the Liverpool Women's Hospital.

"Strictly speaking, you can't take a patient's organs out without consent. But there are occasions when you come across an unexpected finding or incur a complication which compels you to do further procedures without consent.

"In these situations," he adds, "the surgeon has to make a decision. Do I take out the ovaries [for example] without consent because it is highly likely they will cause problems later? Or do I leave the ovaries in until the patient has signed the consent form - thereby increasing the risk of surgical complications next time round, when technically the surgery becomes much more difficult?"

Ten years ago, most surgeons would have opted for removal of organs without the patient's consent. "They would have had no compunction about doing this", says Mr Kingston. "Today we have to be very careful when making such decisions. Removing organs without the patient's consent is dubious practice medically and legally speaking."

Sandra Simkin, 54, from Surrey, is vehemently opposed to surgery without consent. Three years ago Mrs Simkin was told to have her womb and ovaries removed after a small cyst was discovered on an ovary. She told her doctor that she did not want such an operation: "I said: `Why hit a small nut with a sledgehammer? Couldn't the cyst be cut away?' My GP said that it wasn't their practice surgically to remove cysts from women my age. He kept talking about cancer, cancer, cancer."

Eventually Mrs Simkin signed a consent form agreeing to a laparoscopic examination. This, she was told, would determine whether or not she should have further surgery. When she woke up from the operation her womb and ovaries had been taken out. Later Mrs Simkin's organs were examined by a pathologist. "They found that I did not have cancer. My cyst was harmless."

Mrs Simkin says the effects of the surgery have been devastating: "I aged in months - thinning skin, greying hair, deep wrinkles. I was no longer interested in sex. I couldn't sleep for months on end. The depression and anguish were absolutely awful. I spent a lot of time on the telephone to the Samaritans."

Susan McShane, 47, from Plymouth, agreed to a hysterectomy in January 1992 to treat problem periods. "I told my doctor quite emphatically that I wanted to retain my [healthy] ovaries. When I realised that my ovaries had been removed, I got access to my medical notes to see what had been written. One entry said: `Mrs M is considering the option of having her ovaries removed.' It couldn't have been further from the truth.

"After the operation I checked my consent form. Someone had altered it. When I signed the form it said `TAH' [removal of the uterus] and that was all. But when I looked at the form after the operation the letters `BSO?' had been added [possible removal of both ovaries]. I was incensed. They invaded my body and took out something which is irreplaceable."

Mrs McShane obtained an independent report from another consultant. The consultant found in favour of the surgeon: "He said that what was done to me would `improve my future quality of life'. Angry, she set up the Campaign for Informed Consent. "I realised that justice would not come through the courts," she says.

Mrs McShane now suffers from water retention, migraines, constant nausea, aching joints and insomnia. "I think patients should be given a carbon copy of the form of consent at the time of signing", she says. "This would stop forms being altered later on." The form should also be written in simple English: "At the moment the forms are covered in jargon and abbreviations."

Mrs Simkin, founder of the Campaign Against Hysterectomy and Unnecessary Operations on Women, has taken her group one step further. Earlier this year she put forward a proposal for a Women's Medical Protection Act. The act makes it mandatory that no surgery should be carried out without the explicit consent of the patient. All gynaecology should be directed towards the preservation of the organs. The surgeon should not use "clinical judgement" or any other stated reason to remove a woman's organs without permission. Invasive treatment should only be permitted if cancer is present or if there is no alternative. The proposal has won the support of Liz Lynn, MP for Rotherham.

A more effective NHS patient complaints procedure should be established. Ms Gadsby believes many women would be content just to feel that they had been "properly heard". But until such a system is set up, the number of patients seeking compensation through the courts will grow: "People are becoming more aware of their rights to sue. And they are willing to exercise that right", Ms Gadsby says.

"Refresher courses" for surgeons would also help. "Surgeons would get a better idea of the alternatives open to them when treating a particular condition." At present, many rely on training given 30 to 40 years ago.

For Mrs Pearce, such discussions are theoretical. She is still struggling to come to terms with the loss of her foetus. "I find myself looking at other people's babies when I'm working in the supermarket, and wanting to pick them up and take them away," she says. "I wanted that baby so much."

Campaign for Informed Consent: 19 St Edward Gardens, Eggbuckland, Plymouth, PL6 5PB - please enclose SAE.

Campaign against hysterectomy and unnecessary operations on women: PO Box 300 Woking, Surrey GU22 OYE. Membership fee: pounds 10.