HC Deb 02 July 2003 vol 408 cc500-6

Motion made, and Question proposed, That this House do now adjourn.—[Margaret Moran.]

7.31 pm
Miss Anne Begg (Aberdeen, South)

I am delighted to have secured this debate on the treatment of endometriosis. I am chairman of the all-party parliamentary group on endometriosis, and tonight's debate coincides with a mass lobby that was held this afternoon in Westminster Hall. It was organised by the two charities that work with sufferers of endometriosis—the National Endometriosis Society and the SHE Trust.

I must begin, however, by blaming my constituent, Shelby Thomas, for my presence here tonight. If it had not been for Shelby, I would still be as ignorant of this gynaecological condition as the vast majority of the population and, I have to admit, some of the medical profession. It was Shelby who wrote to me describing how endometriosis had devastated her life. She asked me to become involved in lobbying for more resources and helping to raise awareness of this debilitating condition. Believe it or not, until today I had not met her face to face. We had corresponded by letter and often spoken on the telephone, but we never managed to meet up until she made the long trek down to London today to attend the mass lobby in Westminster Hall. I am delighted that Shelby and her friend Amanda, who is also from Aberdeen, were able to stay for the debate. They have a sleeper to catch and I hope that they will still make it, but they are in the Gallery now listening to this debate.

It was thanks to Shelby that I innocently wandered along to the inaugural meeting of the all-party parliamentary group on endometriosis two years ago. Even more innocently, I found myself being elected as chair to the group. I felt a complete and utter fraud, as I knew so little about endometriosis at the time. I knew little about its causes and effects, and about what could be done to alleviate the worst of its symptoms. It is said that a year is a long time in politics, and I now know so much more about the condition that I am even more determined to do everything I can to help ensure that sufficient resources are available for diagnosis, treatment and awareness raising.

Endometriosis is a gynaecological condition that affects 2 million women in the UK. It is often an extremely painful disease, especially during menstruation and after intercourse. Sufferers can experience infertility, fatigue, relationship problems and depression. It can frequently lead to lost days at work. Consequently, sufferers can lose their jobs and have to deal with the financial insecurity on top of everything else. Yet this crippling disease, which is so common and affects so many women in our communities, is little known or understood.

There is a lack of knowledge about endometriosis that ranges not only from those of us in this place, but to educators, the medical profession and young women who may suffer from the condition but have never received an accurate diagnosis.

Shelby Thomas's story is typical. If I may, I will explain a wee bit about her background. She suffered pain from the age of nine, but it was not until she was 27 that she was diagnosed as having endometriosis. When she visited her general practitioner, she was told, as so many are, that it was merely bad period pains and that she would have to learn to live with it. Eventually, she was referred to a gynaecological specialist, but that specialist—a woman, who she thought would feel more sympathy—was as unsympathetic as her GP. It was not until she insisted on seeing another consultant that she finally received the right diagnosis. At the age of 28, she had a hysterectomy; now, aged 31, she is post-menopausal. That is not an untypical story, and it reflects the difficulty, first, of getting the level of pain that is being suffered taken seriously, then of getting an accurate diagnosis of what exactly is the matter.

I asked for tonight's Adjournment debate not only to bring this widespread but little heard of condition to the attention of the House, but to ask the Government to end the situation whereby it takes seven years on average for an endometriosis sufferer to be accurately diagnosed. That is an awful state of affairs, and it is leading to prolonged and unnecessary suffering by endometriosis victims. I ask the Government to provide the necessary investment to end that lack of awareness in the health service and particularly, if the Minister is able to do only one thing, to concentrate that funding on GPs. They are the first line of service. It is to GPs who women with severe gynaecological pain first present, and we depend on GPs to think that it might be more than just a severe period pain. If GPs and practice nurses are made aware of endometriosis and what its symptoms are like, hopefully more women will be referred to an endometriosis or gynaecological specialist much more quickly, so that one of the treatments can start.

There is no cure for endometriosis, but there are some treatments, not all of which work for every person. Once a woman overcomes the first hurdle in getting an accurate diagnosis, two types of treatment may be possible. The first is drug therapy, whereby endometriosis sufferers are given hormone drugs that mimic pregnancy or the menopause to prevent the growth of the endometriosis. Often, however, the endometriosis grows back and the sufferer has to undergo another course of medication or surgery. The second option, surgery, can be very radical. Sometimes it is keyhole surgery, but as often as not it is open surgery and, again, it is not necessarily the end of the matter because the endometriosis can grow back. A well balanced diet can also sometimes alleviate the symptoms of endometriosis.

Since I became chair of the all-party parliamentary group on endometriosis, I have heard the testimonies of many sufferers who have described the combinations of surgery and drug therapy that have been used, but have brought them no relief. Just this afternoon, after a lobby in Westminster Hall, we held a meeting in one of the Committee Rooms upstairs, where, as women told their story, other women frequently found themselves in tears because the story was all too familiar to them all. It was the story of being told that all they had was a bad period pain and that they should grow up and stop being such a wimp; of the difficulty that they have with relationships and the understanding that is required of their husbands and partners; of the search for an effective treatment; and, worst of all, of the constant pain that is often never relieved.

I want to pay tribute to the two main charities that carry out the work with endometriosis sufferers—the National Endometriosis Society and the Simply Holistic Endometriosis Trust, which is better known as the SHE Trust. Their work is complemented by that of many local organisations, all of which offer services and support to those with the condition—for instance, free all-year confidential helplines, usually staffed by volunteers. They have UK-wide support groups, and provide replies to medical questions from endometriosis experts. It is quite difficult for women in rural areas, or areas where no member of the gynaecological team may be an endometriosis expert, to obtain such information. They also offer self-management and volunteer training courses. There is, of course, the website that everyone has nowadays; there are publications and information leaflets; and the groups organise national endometriosis health days and lobbies of Parliament. There is a tremendous amount of voluntary support, and it is thanks to the hard work of those organisations that endometriosis is finally getting on to the health agenda.

One of the all-party group's initiatives of which I am very proud is our organisation of a seminar at the end of April last year. We invited a number of GPs, gynaecologists, researchers, nurses and endometriosis sufferers, as well as parliamentarians, to engage in a much needed sharing of information in Portcullis House. It was a very successful day: it focused people's minds, and enabled them to concentrate on what they wanted the Government to do. We were lucky in that the Minister for Crime Reduction, Policing, and Community Safety, my hon. Friend the Member for Salford (Ms Blears), was able to attend before being transferred to the Home Office in the recent reshuffle.

This was the first time that a Minister had attended an endometriosis event, and many of us remarked that that represented a sea change: at last the Government were prepared to act positively. Indeed, the Minister described endometriosis as a key issue for Government—citing its long-term nature and the fact that the waiting time for accurate diagnosis was staggering—and said that medical training and awareness must be a top priority. She also said that specialist centres were still on the agenda for consideration. I invite the new Under-Secretary of State for Health to associate herself with those remarks, and to assure us that that is still the Government's position.

A number of suggestions were made at the seminar, and we hope that they will be translated into action in the coming year. One was the establishment of national treatment centres to provide specialist help. Arguably the most important point, however, concerned the need for a national framework. That has worked very well in the context of diseases such as cancer, as we have seen in England and Wales and—although perhaps not in quite the same way—in Scotland.

There was a great deal of discussion about the need to raise awareness of the condition among women and health professionals—particularly school nurses, who can explain to young girls what may be going on in their bodies and not be dismissive when they present with severe period pain. It was felt that charities involved with endometriosis needed support, and that there should be a mechanism allowing a consistent programme of dialogue between doctors, consultants, the national health service, voluntary organisations and parent forums. The all-party group played its part in organising that first seminar, but we hope to arrange more in the coming years—perhaps dealing with different aspects of the condition.

Inevitably, there was the ubiquitous request for extra funds—funds for research, and for treatment and awareness-raising. The Minister has listened patiently. I hope she will ensure that endometriosis moves up the priority list when it comes to deciding on NHS funding. The well-being of many women with the condition depends on that.

7.44 pm
John McDonnell (Hayes and Harlington)

I congratulate my hon. Friend the Member for Aberdeen, South (Miss Begg). Many women came here today to tell us their stories, which were heartrending. This is the third lobby that we have had, and on each occasion women have left the Palace of Westminster with a little more hope than they had when they arrived. The hope with which they left today was that a Minister who had already expressed her concerns about the condition, and who would respond to this debate, would work with us and concentrate on the issues on our agenda in the coming year.

The all-party group has established itself around that agenda this year. There are several key factors for us now. First, the awareness campaign is crucial. We thought that one of the most effective ideas would be for local organisations, working with their national organisations, the NES and the SHE Trust, to work in harmony with the Department in developing an awareness campaign, using their own resources, of course, but with a little additional resource from central Government. That programme of work could be effective in raising awareness not just among the medical profession but among all others who come into contact with sufferers.

Secondly, we want to develop a research programme in our work for the coming year. Already we have identified, in debate after debate and discussion after discussion, the lack of research into the condition and the paucity of resources to research it. Although this is a plea for additional resources, we feel that, in its impact on the overall economy, it will be cost-effective. Too many women and families are losing days at work as a result of the condition; in fact, they are losing whole careers.

We have also suggested work to develop treatment centres, but the important thing for us is to get the condition on the agenda of the National Institute for Clinical Excellence. Many arguments have been advanced that it is not a life-threatening condition, so it has not been given the priority of other conditions. We have heard today of the experiences of many people and their families, where it has become life threatening, particularly because of its effect on people's mental health and the risk of suicide as a result of the condition.

We urge that priority be given to the condition. We know that the Government are sympathetic. We want to work directly with the Government through the all-party group and with the national organisations to prepare a programme of work for the coming year, which will raise the hopes and spirits of the many women who have suffered from the condition.

7.46 pm
The Parliamentary Under-Secretary of State for Health (Miss Melanie Johnson)

I congratulate my hon. Friend the Member for Aberdeen, South (Miss Begg) on securing the debate on this important subject. It is a subject to which she has devoted considerable time and energy as chair of the all-party group on endometriosis. What makes it all the more fitting is that today, as she has mentioned, is national endometriosis awareness day. There has been much activity around Westminster as a result. I was particularly struck by her account of how she came to be involved in the issue. I recognise the fact that it is often through our constituents that our attention is drawn to these important subjects.

Endometriosis is the second most common gynaecological condition in this country; it is second only to uterine fibroids. It affects up to about 2 million women. It is estimated that between 3 and 10 per cent. of women aged between 15 and 45 years have endometriosis. In women who have difficulty conceiving, the rate rises to about 25 to 35 per cent. It is a condition that remains with a woman intermittently throughout the reproductive years of her life. For many women the continuing recurrent pain and other symptoms can make life difficult or even intolerable.

This is a puzzling illness steeped in myths. Many theories have been put forward as to what causes the condition. The fact is that we do not know. Symptoms can range from mild discomfort to disabling and crippling symptoms in its later stages. As my hon. Friends the Members for Aberdeen, South and for Hayes and Harlington (John McDonnell) have mentioned, it is a disease that can have lasting effects on a woman's ability to conceive, to work and to maintain relationships. We cannot afford to underestimate the importance of endometriosis and its effects on many people.

Women can develop endometriosis at any time, although it is extremely rare for it to be diagnosed following the onset of the menopause. Outdated ideas about who is likely to have endometriosis are unfortunately still common. There remains a belief that it is an illness of career-oriented women over the age of 30, although we appear finally to be moving on from the school of thought that believes pregnancy will sort it out.

Endometriosis is not always easy to diagnose. The poignant stories that my hon. Friend the Member for Aberdeen, South has told highlight that. The NES has estimated that it can take up to seven years for a woman to be diagnosed. That is a staggering statistic and simply not acceptable in the NHS of the 21st century. It can mimic or accompany other causes of abdominal pain, such as irritable bowel syndrome. It is also important to exclude pelvic inflammatory disease, also a cause of pain and suffering in many women. Laparoscopy, the examination of the pelvic area through a small incision into the abdominal cavity with an instrument with attached light, is the only sure way of diagnosing endometriosis. It is important for everyone concerned that endometriosis be recognised early, referred for treatment and handled sensitively.

I could list the many treatments available, but I want to leave aside the medical management of the disease and its symptoms, the opportunities for surgery and the use of the contraceptive pill, because there are other points that I should like to concentrate on in the 10 minutes that I have left.

A lot of women are looking to complementary therapies to help alleviate the symptoms. The Department has commissioned the Prince of Wales's Foundation for Integrated Health to publish information for patients on the safe use of complementary and alternative medicines. That will include advice on how to choose a regulated and competent practitioner.

My hon. Friends the Members for Aberdeen, South and for Hayes and Harlington made particular reference to the need to increase knowledge, understanding and awareness of this issue. We certainly support GPs' increasing their knowledge of endometriosis. At first pass, endometriosis may not be an obvious diagnosis; however, there are clear pointers that GPs should be able to recognise. They should certainly always think of endometriosis in cases of prolonged painful periods, painful penetrative sex and unexplained infertility. And they must refer women with such symptoms for a laparoscopy at the earliest opportunity. Early diagnosis is essential for this condition.

I know that the all-party group and the NES would like to see more awareness campaigns on endometriosis, particularly for younger women, who are increasingly showing symptoms of this disease. I am delighted to announce that we will fund the NES to produce two information leaflets. One will be aimed at raising awareness among women and encouraging those with symptoms to discuss them with their GP. The other will be specifically for GPs, highlighting the symptoms to enable GPs to identify them and to refer women for diagnosis and appropriate treatment. This is a very positive step forward that I hope will be seen as a continuing indication of this Government's commitment to improving the lives of women with endometriosis.

Today, women rightly expect to receive more information about their health, and they are keen to access information on individual health problems. Armed with such information, they want a proper and full discussion about the options that are available to them. Of course, it is important that a woman discuss endometriosis fully with the doctor providing her care. Self-help groups do play an important part, however, and we should not underestimate the importance of patient support groups, and of the patients themselves working together on a voluntary basis, in raising awareness of endometriosis and providing support for others in the same situation. Indeed, it is invaluable for a woman to find someone else—whether at the end of a phone or face to face, as has happened today—who can appreciate what she is going through from personal experience.

Many of these self-help groups are organised and supported by voluntary organisations that help women who suffer from endometriosis. I should like to acknowledge their role in providing support and advice for such women, and the role played by individuals in setting up those groups and advancing the issues that we are discussing. The NES is the only body in the country to devote itself exclusively to this matter. It works tirelessly to encourage and sustain mutual support among sufferers through its network of support groups. It encourages greater awareness of the condition and its consequences among the medical profession and the general public. I am delighted to say that the Department of Health works closely with the NES and with other organisations such as Women's Health and Women's Health Concern, which offer help and a range of information services to endometriosis sufferers. Indeed, they receive financial support for the good work that they do through our section 64 grants scheme.

I hope that my comments have emphasised the Government's continuing commitment to services for endometriosis. We do recognise, however, that there are good examples of best practice work being undertaken, and that there is a long way to go before we can establish good communications between every doctor and patient. I know that the NES, in particular, would like more complex cases to be treated in a limited number of tertiary centres, with more general care being given in secondary centres. I am aware that some specialist clinics treat advanced cases of endometriosis, but those have been developed locally in response to need, as opposed to being organised nationally. Such specialised commissioning is available only for a few very rare conditions that have to fulfil strict conditions. I would be happy to consider the NES's views, but I would need to be convinced that this was the best way of organising those services.

As I said earlier, we shall be addressing the issue of raising awareness of endometriosis among both women and general practitioners through the development of the information leaflets. I know from what my hon. Friends have told me this evening and from what I have already read and heard, that this campaign and the organisation for awareness are central to ensuring that yet more women do not have the experience—and the resulting trauma, both physical and mental—of the constituent of my hon. Friend the Member for Aberdeen, South. I hope that the leaflets will be of enormous benefit both to sufferers and to GPs and will result in quicker diagnosis and a better quality of life, which we all want for all the women who suffer from endometriosis.

Question put and agreed to.

Adjourned accordingly at four minutes to Eight o'clock.