§ Mrs. Diana Organ (Forest of Dean)I am pleased to have the opportunity to raise the issue of hysterectomy services, since it has been brought to my notice by women in my constituency that they are a cause for concern. Concerns range from the lack of information, advice, counselling and guidance about the procedure and its after-effects, to the treatment offered, surgery involved and after-care, and to the attitudes of some members of the medical profession towards women receiving the treatment. The issue is not restricted to women in the Forest of Dean and Gloucestershire, but involves many thousands of women throughout Britain. I am not a clinician and do not endeavour to make judgments about medical requirements, but it is right to raise certain questions about hysterectomy services.
Roughly 50,000 hysterectomies are carried out in Britain every year. One in five women will have had a hysterectomy by the age of 65. We carry out more per head than France and the United States of America. Some 10 per cent. are carried out because of cancer and others for serious health conditions, but most are carried out because of non life-threatening conditions and to improve the quality of life of the patients. Hysterectomies should improve those patients' lives and not deteriorate them.
Hysterectomies divide into three main types. A total hysterectomy is the removal of womb and cervix; that is the most usual practice. A sub-total hysterectomy is the removal of the womb only with the cervix left in place. A radical hysterectomy means the removal of the womb, the fallopian tubes, the upper part of the vagina and the surrounding fat and lymph glands, and is carried out in the treatment of cancer.
My interest in the issue arose after a constituent came to see me. She had been a healthy, active young woman who was diagnosed with a benign cyst on her left ovary. After her hysterectomy, however, she suffered cross-infection. She had to have a bowel section, and damage to the nerve at the back of her spine caused withering of the muscle in her leg. She is now doubly incontinent and her health is ruined. All of that has had consequences for her sexual life.
I wrote to the hospital asking about cross-infection rates. At the time, the hospital did not keep that information. I then wrote to Ministers. On 30 July 1998, I was told that the information was not kept at that time, but that the Government would publish clinical indicators later that year, one of which would relate to unplanned re-admissions to hospital within 28 days of treatment. It was understood that although the information was not kept at the time, better information would be compiled in the future.
I felt that other women might have had similar health problems as a result of a hysterectomy. I placed an advert in the local Gloucester edition of The Citizen newspaper. The advert read as follows:
Hysterectomy. Researcher wishes to talk to women who have suffered health problems as a result of undergoing hysterectomy in Gloucester.Thirty-four women responded from all over Gloucestershire although, because of the paper's distribution area, they came predominantly from the 278WH Forest of Dean and Gloucester. They were obviously a self-selected group, which I had actively sought. I met with the group, whose problems related to a whole range of issues. They had health conditions and other problems and had had hysterectomies over a period of time, ranging from 12 months to many years previously.I had put the original constituent in touch with the medical negligence solicitor, Helen Barry, who subsequently met with some of the women in the group. After interviewing them, she took four complaints to the General Medical Council. The press was greatly interested by now and at the second meeting of the support group, there were up to 54 women. Helen Barry took on another two cases for complaint to the GMC.
I do not want to discuss the cases, as it would be inappropriate. I shall not pursue those matters for they properly belong elsewhere. However, medical negligence cases are difficult to pursue. Sheila McLean, professor of law and ethics in medicine at the university of Glasgow, states in "Old Law, New Medicine: Medical Ethics and Human Rights" that the United Kingdom courts depend heavily on the Bolam test, which is designed to judge the competence of medical procedure but does not tell us whether a practice is right or lawful.
The debate is not designed to cause a witch hunt against any specific surgeon or hospital. Different clinicians at different hospitals treated the women in the support group at different times. I have raised the matter because I want better guidance and practice for all other women receiving hysterectomy services.
I asked the 57 women in the support group to fill in a questionnaire, so that I could see whether there was any commonality. There was a disturbing pattern of anger at the manner of their treatment. They were not ready for and did not expect what happened to them, and all complained about a lack of information and advice. They were often told that the procedure was the only option. The exact nature of the surgery was not clearly explained to them, so there was a general feeling of a lack of informed consent. Only one was given a leaflet, and that was in relation to a hysterectomy many years ago.
A loss of libido was common, and a side effect was a change in their sex lives and lack of satisfaction with sexual intercourse. There were acute menopausal problems, incontinence after the operation and lower back pain. Unfortunately, most of the women did not complain at the time through the normal complaints procedure, because they felt beaten down and decided that it would be useless to try to take on and fight the whole medical fraternity.
The women in the group complained that some of their questions at consultation before treatment were brushed aside. Many were told that they would not need wombs or ovaries at their age. Some asked whether it was possible to retain the cervix and were told that it was not, but it is. When they asked about the effects on their future sex life, they were told that everything would be fine, if not better. When one woman mentioned the loss of libido post-operatively, it was suggested that she have a couple of gins.
The women in the group did not have hysterectomies because of cancer. For 37 of them, the reason was heavy periods, and some had ovaries removed as well for that reason. It is worth noting that some women are not 279WH aware that they had healthy organs removed. The Minister assured me, in a letter dated 8 March 2000, that the Royal College of Obstetricians and Gynaecologists does not have a policy of removing healthy organs without consent while performing hysterectomies.
In some cases, we must ask why hysterectomy was carried out at all. Consultants say that most hysterectomies are elective, and could be termed social gynaecology. Rates vary depending on region and consultant, but disparities should surely be monitored and investigated. Why are alternative therapies and treatments not exhausted? Why do surgeons carry out unnecessary surgery? The matter was recently highlighted in a BBC television programme that focused on one consultant's use of alternative therapies.
There is growing evidence of the loss of libido or a change to sexual experience as a side effect of the removal of ovaries or a hysterectomy. That can radically affect the quality of a woman's life, but it is rarely mentioned in any of the advice leaflets, even that produced by WellBeing. It is often dismissed by medical staff in consultation as being insignificant.
I have a document dated 28 March 2000 about a voice tempo trial into female sexual dysfunction, sponsored by a pharmaceutical company, which is currently under way. The study is trying to find out why many women have a less active and satisfying sexual life after ovary removal. The research shows that at least one in three women, and possibly one in two, say that their libido has decreased since surgery. Other research clearly proves that sexual changes after hysterectomy are real, not imagined, as it shows that the uterus and cervix must be present if women are to fulfil themselves and climax. Why are women not informed that they could suffer such side effects of hysterectomy? It would have an impact on their lives. Why do some surgeons unnecessarily remove the cervix when retention would help?
Other serious side effects are not mentioned, including the possibility of further surgery being necessary as a result of adhesion. Women are not informed of that risk, either.
The response to my advertisement was not unexpected. Many other support groups have been set up over the years, notably those run by Louise Greenhill, Brenda Johnson—who set up the Ledward support group—and Sandra Simkin. Those groups all experienced the same problem. They felt that they were ignored and not given good consultation, and they were not expected to have an interesting and full sex life after hysterectomy.
Some professionals, such as Professor McPherson and Professor Roger Gosden, have spoken out about this issue, saying that the effects can be devastating, and that some women are actually driven to suicide, or experience suicidal depression as a result of the after-effects of the surgery. There should be much more work done in this field, more investigation into alternative therapies and more monitoring of the necessity of hysterectomy and of the use of sub-total or total hysterectomy. Much more research should be done into the clinical evidence of the after-effects of hysterectomy and the effects on women's lives.
280WH After the interest taken by the local press, one of the Gloucestershire hospitals, the Gloucestershire Royal, asked me to come in and talk about the issue. The head of the clinical team, quite rightly, wanted me to understand the work that they do, the expertise that they deploy and the excellence that they hope to provide. They wanted to show how they are continually working to provide a better service for women and how they are always looking to improve their procedures.
The hospital's women's health directorate subsequently sent me details of procedures and advice, and the leaflets that are available. That procedure is a model of best practice. It is thorough, and the hospital is to be congratulated on it. If the procedures carried out at Gloucester Royal hospital had been used in the past, followed elsewhere and implemented across the NHS, that would have dealt with the concerns and the problems of many in my support group. If that best practice model were to be used elsewhere, it would provide a much-improved situation for women receiving this kind of treatment.
The Gloucestershire Royal hospital administrators took seriously the fact that women in the support group had not used their complaints system. They told me that they would be examining their own system to find out how it could be improved and made more user-friendly and available. They would like to learn from the support group. They would like its members to talk, if they were happy to, about their experiences, and offer constructive advice about how the hospital might respond and put in place a better system.
I want to impress on the Minister that not only is more research necessary, as I mentioned at the beginning, but that there is a need to find out about different treatments and their effect on different women. There should be a much freer exchange of best practice within hysterectomy services across the NHS. Women must have better experiences both with and after hysterectomy. There should be clear guidance from Government in this field. There should be inquiry into procedure and the guidance on it from the National Institute for Clinical Excellence.
There should also be clear, explicit statements on good practice from the Royal College of Obstetricians and Gynaecologists. We should inquire into the number of elective hysterectomies, and what consultants are saying about social gynaecology. We should also inquire into the possibility of using alternative therapies instead of performing the unnecessary surgery that seems so often to take place.
It is also necessary to examine the advice and counselling that women get, so that they can always get the necessary support, advice, counselling and information, and that their consent is genuine and informed. If people fill in a consent form, that does not necessarily mean that they know what will happen to them. People must be able to make an informed decision, and informed consent requires information about what will be done to their bodies and what that will mean for their quality of life afterwards.
I wrote to my right hon. Friend the Secretary of State for Health on 29 November 2000 and asked whether he would meet the delegation from the Forest of Dean support group so that members of the delegation could make their experiences clear to him and ask the 281WH Government to improve the service for women in future. I ask my hon. Friend the Minister to make a commitment to receive the group at the earliest possible opportunity to allow us to improve services for many women so that we do not have to form support groups in future to give support to women whose lives have been devastated by hysterectomy services.
§ The Minister for Public Health (Yvette Cooper)I congratulate my hon. Friend the Member for Forest of Dean (Mrs. Organ) on having secured this debate on hysterectomy. It is a subject to which she has devoted considerable time and energy in her constituency, and I congratulate her on the work that she has done locally with the support group. The matter deeply concerns many thousands of women throughout the country.
Hysterectomy is one of the most commonly performed gynaecological operations, and it has brought symptomatic relief to many thousands of women. It has profoundly changed the lives of some women by enabling them again to go out in public without fear of embarrassment and dealing with the symptoms from which they have suffered. However, I also recognise that other women have experienced long-term physical and psychological side effects and have not received the standard of care that we would accept.
In the past, before the advent of other methods of less-radical treatment, hysterectomy was sometimes offered as the universal panacea for heavy periods or severe period pains. Fortunately, times are changing, as is reflected in the falling rates of hysterectomies being performed. In 1993, more than 72,000 hysterectomies were performed in England. By 1998, the latest year for which figures are available, that figure had been reduced to more than 56,000. My hon. Friend may be interested to learn that, in the same period, the comparable figures for Gloucester were lower than the national figures and show a fall from 2.3 hysterectomies for every 1,000 women in 1993 to two hysterectomies for every 1,000 women in 1998.
My hon. Friend described the experiences of some of her constituents and those involved in the support group who had experienced problems as a result of hysterectomies. I know that she brought those matters to the attention of senior management and clinicians at a meeting at the Gloucestershire Royal NHS trust, and I welcome her remarks about the practice and the changes taking place there. The trust has examined its clinical practice in gynaecology and has done what it can to improve practice and to work with the active participation of patients. It has introduced new information leaflets, clear and explicit consent forms and a nurse consultant in gynaecology to offer counselling and support to women faced with this traumatic operation. I was interested to hear my hon. Friend say that it was effectively a model of best practice, and I should be interested to hear more about its work and how that best practice might be spread across the country.
§ Mrs. OrganWould it be appropriate for me to send my hon. Friend a copy of the exact formula that the 282WH health directorate of the Gloucestershire Royal NHS trust uses for its procedures so that she could use the formula elsewhere?
§ Yvette CooperI thank my hon. Friend for that suggestion. That would be extremely helpful. I shall discuss later how we could further spread best practice in the field. I congratulate her support group on its work with the trust. The most powerful changes will take place in the health service when we embody patients' experience in designing services and ensure that patients' voices are heard in terms of providing health services and how professionals operate.
The most common reason for a hysterectomy is a condition known as menorrhagia, which is severe bleeding, often with abdominal pain. In some cases, it is due to the growth of fibroids or benign tumours in the wall of the womb, but in many other cases the cause is not known. Although the symptoms are not often discussed in public as they may be deemed to be embarrassing, they can often cause considerable distress to women who experience them.
Other reasons include the painful condition known as endemetriosis for which, when child bearing is over, a hysterectomy may offer the only permanent solution. Older women may suffer a prolapse of the womb when it drops into the vagina. Furthermore, emergency hysterectomies may need to be performed to save a woman's life after a catastrophic bleed during childbirth or when a malignant tumour needs urgent treatment.
My hon. Friend was right to say that most hysterectomies are undertaken to relieve menstrual problems, particularly excessive bleeding. In many cases, no specific cause for the underlying problem can be found and more simple forms of therapy have failed to provide a woman with sufficient relief. The important fact is that a hysterectomy is rarely the only available solution to a menstrual problem and usually other treatments can be considered first. When different alternative treatments are available, it is vital that a woman should have the opportunity to discuss all the possible options and consequences of the different treatment. She should be fully informed before giving consent to a particular treatment and to a hysterectomy.
I am aware that many women consider that they have not undergone a hysterectomy of their own free will, that the full options were not explained to them and that they were not aware of the consequences. In those circumstances, the psychological effect can be considerable. However, it is not always fully explored and appreciated. A hysterectomy is different from many other surgical interventions because it can involve the removal of a healthy, non-diseased organ. That can make it difficult to come to terms with what can be a huge life event for some women, depending on the circumstances involved. It must be the right choice for the individual and she must fully understand the reasons behind it. She must have the opportunity to have a full discussion about it with the professionals.
My hon. Friend asked whether women are receiving the right treatment for their particular condition. Also, we must consider whether they are receiving all the necessary information, so that they can make a full, informed decision about which option to choose. I welcome the fact that the Royal College of 283WH Obstetricians and Gynaecologists is taking such issues seriously. It has issued guidance to its fellows and members on the need to reduce the number of unnecessary hysterectomies. It has also issued evidence-based guidelines on the management of menorrhagia that clearly outline alternatives to hysterectomies for the treatment of women with excessive menstrual bleeding. It is important that those guidelines are now being used increasingly in clinical audit and governance programmes to ensure effectiveness locally. The RCOG has asked its guidance committee to examine further hysterectomies, a matter to which I shall return in a moment.
Increasingly, patients rightly expect to receive more information and want a full, proper discussion about the options that are available to them and the problems from which they are suffering. In that context, self-help groups can play an important part. We should never underestimate the importance of patient support groups and the patients themselves working together on a voluntary basis to raise the awareness of hysterectomies or problems of other patients and providing support for others in the same situation.
The NHS has a responsibility for such matters, too. The Department of Health funds through the section 64 scheme several organisations such as Women's Health, which runs telephone helplines and produces information leaflets. I was interested in my hon. Friend's point about providing national guidance on information that should be given to women. I am interested in that proposal and in how to take it forward. Options may include working through the NHS on-line or through the on-line electronic health library. More work can be done in that area.
However, even that cannot get away from the important need for individual advice from health professionals to patients, depending on their personal circumstances. The Department's role is to liaise with the Royal College of Obstetricians and Gynaecologists. The question is how to ensure that best practice is spread throughout the country. There are excellent examples of the right kind of support being provided for women, but we must ensure that that happens for all women everywhere in the country.
We asked the Royal College of Obstetricians and Gynaecologists to update and reissue guidelines to members on the need for consent. Last April, the RCOG reminded fellows and members of the need to obtain informed consent from patients. Patients should be 284WH given an adequate explanation and time to come to their decisions and consider other options; their specific wishes should be observed and recorded in the notes at the time of discussion and decision making. The possibility that a woman's ovaries might need to be removed in the operation should be fully discussed with her beforehand, and not carried out without her express written consent.
The RCOG's guidance committee has been asked to consider hysterectomies and informed consent as subjects for further guidance, and we will work with it on that. I take on board the points made by my hon. Friend the Member for Forest of Dean, and will be happy to meet her and any delegation that she brings to discuss the issue. I suggest that we should use such a meeting to discuss what we could feed into the debate, as well as the work that the royal colleges will do.
My hon. Friend spoke, too, of the question of referring guidelines to the National Institute for Clinical Excellence. She will be aware that our approach is to establish national standards across the board, but that we already refer a large number of guidelines to NICE. Our first step will be to work with the royal colleges on the guidance that can be set out.
I hope that what I have said emphasises the Government's continuing commitment to the principles of keeping the patient at the centre of care and improving quality care across the board. We should recognise that although there are good examples of best practice, things are not perfect everywhere throughout the NHS. There is a long way to go before we can establish good communications between every doctor and every patient as standard.
We are making significant progress and beginning to make a real difference to informing and working with women, so that hysterectomies are undertaken for the right reason and the women concerned understand the decision and play an active part in reaching it, as part of the management of their condition and treatment. That will ultimately mean that we spare many women the misery that they currently experience, when they take such a huge step in their lives without being fully involved in a key decision affecting them and their families.
That is an area in which we can work with the voluntary sector and self-help groups. Patients' experiences should inform all the improvements that we take. I look forward to discussing the matter further with my hon. Friend the Member for Forest of Dean and thank her for raising the issue today.