Endometriosis

– in the Scottish Parliament at 5:07 pm on 28 June 2001.

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Photo of Lord David Steel Lord David Steel Presiding Officer, Scottish Parliament 5:07, 28 June 2001

The final item of business today is a members' business debate on motion S1M-1970, in the name of Miss Annabel Goldie, on endometriosis.

Motion debated,

That the Parliament notes the debilitating effect which endometriosis has upon many women in Scotland; acknowledges the need for greater awareness of this disease amongst the general public and the medical profession, and encourages greater co-operation between relevant organisations and individuals to facilitate the early diagnosis and treatment of the disorder.

Photo of Annabel Goldie Annabel Goldie Conservative 5:12, 28 June 2001

I have pleasure in opening the debate on the motion in my name. I thank colleagues for supporting the motion and for being present. In particular, I thank the Scottish Parliament information centre for a helpful research note.

I welcome to the public gallery sufferers of endometriosis, their families and their friends. It is good to have them here with us.

I have a broad political point to make for the last debate before the recess. It is a point in support and defence of our Parliament. By our Parliament, I mean not just the Parliament of the MSPs, but the Parliament of our visitors in the gallery and of people beyond. The point is that, this evening, we are debating in Edinburgh the condition endometriosis. Before 29 May 2001, I could not have told you what that was. I had never heard of it. I do not suffer from it. However, on 29 May I received an e-mail from two constituents—a husband and wife—that detailed the condition. It sounded deeply unpleasant, is clearly not well known and apparently affects 1.4 per cent of women of child-bearing age in Scotland. The age group of women between 25 and 44 is particularly susceptible.

I wondered about lodging a parliamentary question, but then I thought, "No. Lodge a motion for debate and find out whether more MSPs can be involved, whether we can address points to the minister and perhaps open up the debate." Here we are, less than a month later, doing just that. Without a Scottish Parliament, that would have been impossible. I hope that our visitors, whatever their political beliefs, feel involved, noticed and relevant. I also hope that they realise that they have triggered the accessibility, accountability and responsiveness that the Parliament is intended to demonstrate. That seems a good footnote for the end of our second year.

The dictionary definition of endometriosis is:

"A condition in which tissue more or less perfectly resembling the uterine mucous membrane (the endometrium) and containing typical endometrial granular and stromal elements occurs aberrantly in various locations in the pelvic cavity."

We may not feel much the wiser after that. The reality of the condition for many women of child-bearing age is pain, possible bleeding, acute discomfort before and during menstruation, and in some instances symptoms of irritable bowel syndrome, lethargy and even infertility. All that is accompanied by all the embarrassment and discomfiture that such an unpleasant condition induces.

The only compensation for getting on a bit is that the condition will usually disappear with the menopause. The only certain diagnosis is by a laparoscopy or, occasionally, by a laparotomy, which is a major operation and a very intrusive piece of surgery. The treatment for the condition—treatment, not cure—is principally either hormonal or surgical, but complementary medicine can also play a role.

I realise that many members want to speak, and it is not for me to outline the details of the condition and its many facets and forms. I am sure that other members will be able to give much more competent and personal contributions in that respect.

I will set out what it is important for this debate to achieve. I would welcome the minister's comments on how we bring a focus to tackling endometriosis in Scotland. I have ascertained—largely by e-mail, but I have spoken to one of them—from general practitioners that there is an awareness of the condition but that there is an acceptance that it is a difficult one.

I suggest to the minister that we consider some of the issues involved. That would raise public awareness of this unpleasant disease and, I hope, serve as a constructive influence in trying to widen the debate and assist with a more strategic attitude towards how we deal with it.

One question that springs to mind is whether we can assist GPs with training. Could we formulate guidelines, to aid diagnosis? That might help many women who know that they are suffering, but who have no idea what is affecting them. Perhaps we could instigate a specialist referral procedure. Could we perhaps build on the work of the health department's chief scientist office, which has already done excellent work in Scotland and has a database on the condition? We could perhaps also develop a national framework for the treatment of the disease in Scotland.

I have a message to women in Scotland: do not be put off going to the doctor because of shyness, self-consciousness or embarrassment. Help can be provided, and the most important thing is for that help to be obtained when it is needed. Many of the unpleasant, debilitating and painful consequences of the condition can be alleviated to some extent.

I hope that by having this debate this evening we will make our contribution to the broadening of awareness and to a more informed debate about the disease: let us hope that the Parliament can be the instrument for delivering more help to those who are afflicted by it.

Photo of Elaine Smith Elaine Smith Labour 5:18, 28 June 2001

I start, of course, by congratulating Annabel Goldie on securing this important debate. This is a subject that receives very little recognition and I believe that it is an issue of discrimination against women in the health service. I do not want to dispute Annabel's figures, but a figure provided by Women's Health estimates that as many as 10 per cent of women suffer from the condition. Given the lack of diagnosis by GPs and the lack of knowledge about the condition among women, I suspect that the figure could be substantially higher.

I was aware of the condition before, but became even more aware of it because I have two friends who are suffering from it. What is the condition? It is thought to be the second most common gynaecological condition, and it is one of the most complex. It is a painful, chronic disease that affects many women during their reproductive years. The endometrium is the tissue lining the uterus. In response to hormonal commands, it builds up, breaks down and is shed every month, during menstruation.

With endometriosis, the tissue is found outside the uterus, in different locations. It still develops and continues to respond to the same hormonal commands, but, unlike with periods, the blood and tissue has nowhere to go. That can cause internal bleeding, inflammation, the formation of scar tissue and adhesions. That in turn can cause extreme pain, bladder and bowel problems and infertility.

Some women experience no pain or symptoms and their problems can be recognised only because of infertility investigations or during other surgery. However, for many women, the pain is absolutely intolerable. There are a number of symptoms, but endometriosis can be conclusively diagnosed only by a laparoscopy, as Annabel Goldie pointed out. Its causes are unknown and there is no known cure. Various types of treatment are available, ranging from hormone treatment to surgery, but, unfortunately, hormone treatment can cause side effects, including temporary infertility. Some women have found alternative therapies helpful, but unfortunately there has been very little research to demonstrate their effectiveness.

Various theories have been advanced about the causes of endometriosis. Suggested causes include genetic predisposition and retrograde menstruation. One very disturbing theory is that environmental toxins may be involved. Studies have shown that certain environmental toxins, such as dioxin and petrochemicals, can exacerbate endometriosis. More work needs to be done on that theory.

We do not know the cause of endometriosis, there is no cure and diagnosis often takes years—years of pain, suffering and mental anguish for some women. I mentioned my two friends who are suffering from this condition. Both are young women in their early 30s. One of them, May, was fobbed off for years by her GP, who told her that she probably had irritable bowel syndrome. After suffering unbelievable pain and discomfort, she moved to England and signed on with a female GP, who immediately diagnosed endometriosis. Within six months she had the surgery to which Annabel Goldie referred—a laparotomy—and her condition is now much improved. She told me that the relief of knowing what was wrong was unbelievable, as she had been convinced that there was something terminally wrong with her.

In retrospect, it is easy to think that May could have been more assertive with her original GP, but it is hard for women to tell GPs how to do their job. Women know their bodies; they know when something is far wrong, but they are at the mercy of their GPs. Too many GPs—particularly male ones—fob women off by saying that they are just experiencing what women have to go through every month. Worse, they consider them to be hysterical females with a low pain threshold.

In Scotland, the average time for diagnosis of endometriosis is seven years, which is absolutely shocking. The minister must consider ways of changing that. We must reduce delays in diagnosis by ensuring that GPs are better informed about this condition and able to recognise it. Like Annabel Goldie, I ask the minister to commit himself to a publicity campaign to raise awareness of endometriosis among GPs and among women. He should use his influence to ensure that endometriosis is included in GP training. He could also commit himself to encouraging GP specialists in this area. A national strategy could include a campaign to publicise the disease, better and quicker diagnosis, research into the causes of endometriosis, development of better ways of managing it and, ultimately, a cure. There must be resourcing of services to provide support to women and their families.

Physical pain and suffering is not the only way in which endometriosis affects women's lives. It can also mean infertility. There is a postcode lottery not only when it comes to diagnosis and treatment of endometriosis—the same applies to assistance with infertility treatment. That is another issue we need to address.

We must put an end to the shocking treatment of many women with endometriosis. We need recognition, diagnosis, research and sympathetic treatment of women by the health service. We need resources to ensure that those things are available and to support the societies and groups that help the women affected. Given that the Minister for Finance and Local Government has announced extra money today, this may be a good day to highlight the needs of women with endometriosis. Perhaps the Deputy Minister for Health and Community Care can press for some of that money to be used to tackle this horrendous disease.

Photo of Kenneth Gibson Kenneth Gibson Scottish National Party 5:23, 28 June 2001

I congratulate Annabel Goldie on securing this debate. I also congratulate her and Elaine Smith on their passionate and informed speeches.

As I have a mother, a wife and a daughter, this issue is important to me, just as it is important to many of the women who are here today. I find it bizarre that in the 21st century, although this disease has been known for many decades—indeed, for many generations—we do not appear to have advanced very far in its diagnosis or treatment. It is extremely important not only that more resources are dedicated to research into this painful condition, but that we examine how other societies deal with it.

Unfortunately, it is clear that many women are ignorant of endometriosis. As has been said, many may have the disease but be unaware of it. As is the case in many debates that we have on health issues, it is clear that there is no joined-up thinking on this matter. There is no doubt that there are examples of best practice in Scotland and further afield, but we do not appear to be able to bring them together to ensure that the maximum number of women in Scotland benefit. If we can put a man on the moon, surely we must be able to find a cause and a cure for endometriosis. Perhaps we have not been looking hard enough.

I regret the fact that Scotland's first Parliament has not shown as much interest in endometriosis as it should have done. Only one parliamentary question has been asked about the condition—I am pleased that my colleague, Kay Ullrich, lodged that question. Some money is being dedicated to research, but £200,000 is insufficient to address the full implications of the condition.

Elaine Smith said that GPs need to be educated on the diagnosis of endometriosis if we are to avoid some of the problems that she mentioned in her speech. GPs must be taught to deal with the condition sensitively, particularly if it leads to infertility. That tragic circumstance has affected many women.

If we are to allow more women to go through life without having to endure this extremely painful condition, we must advance our knowledge of endometriosis and prioritise finding a cure and a better way of diagnosing it.

Photo of Mary Scanlon Mary Scanlon Conservative 5:26, 28 June 2001

I, too, would like to thank Annabel Goldie for initiating this debate. Like her, I can barely pronounce the condition, let alone understand it—and even less spell it. It is a great advantage that the Parliament is able to raise awareness of such conditions.

I was quite concerned when I examined the potential impact of the condition on fertility. That is part of a much larger issue, which I hope the Parliament will address in future.

Photo of Elaine Smith Elaine Smith Labour

Does Mary Scanlon agree that it is unacceptable that some health boards will help with fertility treatment and that others will not? Strangely, women who live in the Highland Health Board area are often able to receive treatment in another health board area, whereas women in those areas cannot.

Photo of Mary Scanlon Mary Scanlon Conservative

The passion with which Elaine Smith speaks on this subject has been mentioned. I advise her that women from Wick and Skye in the Highland Health Board area must spend a lot of time travelling, at great expense, to Aberdeen for treatment. Perhaps we could agree to hold a debate on that issue.

Annabel Goldie's motion led me to an extremely helpful website: ScotEndo, which was set up by Susan and Sandra. I also learned that there is an endometriosis awareness day on 4 July. The ScotEndo website is a wonderful source of information on the causes and treatment of endometriosis. The website shares information and provides guidance and tremendous support to women.

I was unaware of the condition until I prepared for the debate. Some figures show that 2 million women in the United Kingdom suffer from endometriosis. Whichever figures are correct, it is likely that around 200,000 women in Scotland are affected. I share the concern about the average time taken to diagnose the condition. As Kenny Gibson said, one cannot consider treatment until diagnosis has been made, yet in Scotland it can take seven years from the onset of symptoms to diagnosis, compared with six months in England. That is quite unacceptable.

I hope that the minister will give an update on Susan Deacon's written answer of 11 December 2000. Given that there are four projects in Scotland—one is supported by the health department's chief scientist office—I hope that some of that research has been concluded and that we are moving towards Scottish intercollegiate guidelines network guidelines and the kind of protocol that Annabel Goldie asked for, which will enable better diagnosis.

I will conclude with a quotation from the website:

"Endometriosis is not an infection.

Endometriosis is not contagious.

Endometriosis is not cancer."

The debate has been highly informative and I look forward to hearing the minister's response.

Photo of Malcolm Chisholm Malcolm Chisholm Labour 5:30, 28 June 2001

I congratulate Annabel Goldie on obtaining today's debate, which will help to raise the profile of endometriosis in Scotland. The timing of the debate is appropriate, as an awareness day for endometriosis takes place next week, on 4 July.

As a man, I will never suffer directly from the condition, but I have read about the symptoms and can imagine how debilitating and distressing it must be. Perhaps the most distressing thing is the fact that endometriosis can cause fertility problems. It is estimated that between 3 and 10 per cent of women between 15 and 45 have endometriosis. Endometriosis accounts for 25 to 30 per cent of women who have fertility problems. As Elaine Smith reminded us, endometriosis is the second most common gynaecological condition in this country.

Various members made important points about the need for the greater awareness to which the motion refers. Greater awareness of the condition is needed among the general public and I hope that today's debate has helped. I will certainly consider Elaine Smith's suggestions about an information campaign. We are developing an information strategy for patients in the health service, which I am sure will take on board the points that have been made today.

Awareness among general practitioners is also required, which Annabel Goldie referred to when she suggested that guidelines be provided. I am pleased that the Royal College of Obstetricians and Gynaecologists has produced UK-wide guidelines on the investigation and management of endometriosis. The guidelines have brought together the latest knowledge and best practice and are based on clinical evidence and treatment of endometriosis. The guidelines also examine the options for treatment in the light of symptoms and associated infertility. The guidelines will, if necessary, be reviewed and updated in 2004.

The guidelines have been distributed to all the fellows and members of the Royal College of Obstetricians and Gynaecologists and been made available to the Royal College of General Practitioners. I hope that the guidelines will lead to earlier and better diagnosis of endometriosis, although, having spoken to GPs, I know that they do not always receive the guidelines that are sent to them. One GP suggested that local health care co-operatives should look at the endometriosis guidelines—and, indeed, other protocols that they receive—as part of clinical governance. We will certainly try to take that work forward as well.

The NHS in Scotland provides treatment that can help reduce or eliminate the symptoms, such as hormone treatment, which has been referred to, and laparoscopic or conventional surgery. Hysterectomy is a last resort.

The Scottish Executive is aware that service provision could be improved. All members referred to problems with infertility treatment, which we recognise has, in the past, been variable. Last year, the report of the expert advisory group on infertility services in Scotland was published. It set out how the management of delivery of infertility services could provide equity of access to services and treatment and so end the postcode lottery for treatment across Scotland. NHS boards and trusts are now working on how best to implement the report's recommendations. Officials in the health department have recently written to boards and trusts to ask for information on what progress has been made to date.

The need for further research has also been mentioned. Two endometriosis research projects in Scotland are currently being funded through research funds that have been made available through the chief scientist office. The projects, at Aberdeen University, are looking at a particular form of treatment for the conditions and the most suitable form of anaesthesia for that treatment.

The motion also refers to the need for greater co-operation. Because of its unfortunate tendency to recur, endometriosis might be said to come into the category of chronic enduring conditions. In "Our National Health: A plan for action, a plan for change", the Executive promised that we and the NHS would work closely with patient support groups to ensure that the needs of those with chronic enduring conditions are met. As the plan states:

"These groups possess a powerful and valuable insight into the spectrum of needs of people suffering from enduring health problems. We want to ensure that these support groups are closely involved in service design and delivery at both a local and national level."

One of those groups is clearly the National Endometriosis Society. I pay tribute to the work of that society. It is based in England but it could, of course, apply to the Scottish Executive health department for funding for its work here in Scotland.

I hope that we have learned more about endometriosis today. I commend Annabel Goldie for drawing this little-understood condition to our attention. As she said—and this is a fitting way to end our debate—it is a tribute to the accessibility, accountability and responsiveness of the Scottish Parliament that this debate has been held here today.

However, we will not rest content with having discussed the issue. I undertake to work in the ways that I have indicated. I thank all members who have contributed today and helped to draw more attention to this very serious condition. It certainly needs our attention.

Photo of George Reid George Reid Scottish National Party

That concludes this debate on endometriosis. To those who are now heading off, I wish you happy holidays.

Meeting closed at 17:36.