§ Motion made, and Question proposed, That this House do now adjourn.—[Mrs. McGuire.]
10.18 pm§ Mr. John McDonnell (Hayes and Harlington)It is a cruel irony that the subject of endometriosis has been timetabled for debate today, on St. Valentine's day. It is ironic because, for many women sufferers of endometriosis, lovemaking can be extremely painful. It is cruel because, for some women, the condition prevents them from bearing the children they so lovingly wish for. I have sought this debate to draw attention to a condition that not only has heart-rending consequences, but is underestimated in its incidence and effects; under-publicised, resulting in widespread ignorance of its symptoms among women and general practitioners alike; and under-resourced, leading to delays in diagnosis, inappropriate treatment and a postcode lottery for patients seeking to gain access to the relevant expertise.
What is endometriosis? It is probably one of the most complex gynaecological conditions, and it is the second most common such condition. It occurs when the endometrium—the cells that line the interior of the uterus—are found in other parts of the body. The endometrium is most commonly misplaced on the outside of the uterus, on the Fallopian tubes, the ovaries, the bowel, the peritoneum—the lining of the pelvis—and elsewhere, usually in the pelvis. Cyclical bleeding of these fragments can lead to chronic pelvic pain and the formation of adhesions and cysts. The symptoms are known to vary widely. This affects the ability to diagnose the condition because of the similarity with the symptoms of other diseases. Symptoms associated with endometriosis include: dysmenorrhoea, or painful bleeding; chronic pelvic pain; deep dyspareunia, or painful sexual intercourse; and infertility.
A recent study by the Northern Endometriosis Centre found that endometriosis causes both disturbing local symptoms and also profound effects on the general health, personal life and well-being of sufferers. Apart from the physical manifestations of this condition, the chronic pain suffered by its victims can place strain on the woman's relationships and career.
A survey by the National Endometriosis Society conducted last year asked whether endometriosis had ever affected women's employment. Some 65 per cent. said yes; 30 per cent. had not been able to keep the same job and 16 per cent. had stopped working. The cost to the economy has yet to be calculated, but must run into hundreds of millions of pounds.
The causes of endometriosis are not known for certain. However, there are several theories, including retrograde menstruation; metaplasia theory, or incorrect cell development; vascular theory, under which endometriosis tissue may travel through the bloodstream; and immune theory, linking the condition to an immune dysfunction. As diagnosis can only be confirmed surgically, it is difficult to establish accurate figures for the incidence of this condition in the UK.
The organisation Women's Health UK suggests that between 3 and 10 per cent. Of women have endometriosis. For women having difficulty conceiving, the figure rises to between 25 and 35 per cent. As more diagnoses are 431 occurring, we are having to revise our estimates upwards. It is now suggested that between 1.5 million and 2 million women suffer from endometriosis, giving an average of between 500 and 2,000 sufferers in every constituency.
The NES survey demonstrated that, contrary to past belief, the age range of sufferers is across all ages, but there is a high incidence among young women. Some 17 per cent. of endometriosis sufferers were found to be under 16, and 35 per cent. were in the age range of 20 to 29.
The diagnosis of endometriosis is difficult. Its variable presentation and its overlap with other conditions such as irritable bowel syndrome and pelvic inflammatory disease has contributed to an average eight-year delay between onset and a surgical diagnosis in the UK. For some, the time between onset and diagnosis can be decades.
The surgical procedure of laparoscopy is the standard diagnostic test, but non-invasive diagnostic methods such as ultrasound and magnetic resonance imaging have also become available.
The choice of treatment depends on a number of factors, such as the woman's age and her fertility plans, previous treatments and their effects and the nature and severity of the disease. The most common medical approach is the continuous use of oral contraception. Other approaches include the use of androgen-like drugs and the use of analogues.
Although all these treatments have been shown to provide some control of mild or minimal disease, they each carry a side-effect profile. It is clear that moderate and severe endometriosis cannot be managed by drug therapy alone. For these sufferers, surgery becomes the preferred option. Minimal surgery is commonly by laser. Other forms used are cauterisation, ablation and excision. In the most extreme cases it may be necessary to remove the uterus, ovaries and Fallopian tubes in order to remove all the active disease. Tragically, a significant proportion of women who undergo radical surgery report the recurrence of symptoms.
Given the extent of this condition and the potential severity of its effects, there is a need for a comprehensive programme to address the needs of endometriosis sufferers. For too long there has been no comprehensive response to the disease. Local planning, campaigning and pressure have not contributed to an overall approach—only to a limited approach in particular geographical areas. If men were suffering in this way, I doubt whether we would need today's debate.
First, we need to tackle the level of ignorance about this condition. Widespread ignorance of the condition and its symptoms results in women delaying their first consultation with their general practitioner or health practitioner. In the NES survey, women were asked whether, when they first experienced the symptoms, they thought they were normal. A staggering 46 per cent. said yes; they accepted the pain that came with the condition almost without question. When asked whether they suspected that they might have endometriosis before they sought medical help, 81 per cent. of women said no. That is a reflection of the lack of awareness of the condition, and of the lack of information disseminated about it. When women were asked where they had gained the information about the condition, 54 per cent. said that they 432 had discovered the information from the media, and only 8 per cent. said they had found out from official sources, medical leaflets, and so on.
Unfortunately, some women's conditions are still veiled in stigma, and this condition can be one. It can lead to difficulties of disclosure, anxieties and distress, especially among girls and young women. We need a national programme to raise awareness among the general public and among women of all ages, but especially among young women and girls. That would also assist in identifying the needs of women from the range of cultures that make up our multicultural society today. In raising awareness among the general public, we must also facilitate early diagnosis and more effective treatment.
The National Endometriosis Society survey found that in only 9 per cent. Of cases was the condition diagnosed when a sufferer first vent to her doctor and discussed the symptoms. It found that 43 per cent. of women received a non-gynaecological diagnosis, usually of irritable bowel syndrome or appendicitis. A further 11 per cent. were told that they were suffering from painful periods, and 15 per cent. were told that there was nothing wrong.
We desperately need a new initiative to reduce delays in diagnosis and ensure that GPs are more informed about recognising the disease. That could be done by featuring the condition more prominently in medical training, and by emphasising it in in-service training and in information provided to GPs.
Greater recognition needs to be given to specialists already working in field, but we also need to establish a wider base of expertise among primary carers. That could be an ideal area in which to develop the proposals in the Government's NHS plan for the training of GP specialists. Mentoring could be provided by consultant specialists in particular hospitals around the country, and it might be possible to use distance learning to develop the specialism among those working in the field.
Although some of the world's leading researchers and clinicians in this condition work in this country, access to treatment can depend on which GP a woman encounters and on the area in which she lives. Often, our limited NHS resources are waged by inappropriate treatments and diagnostic delays.
The NES survey asked sufferers which treatments the GP recommended after their first visit. It found that 47 per cent. were given pain killers, 32 per cent. were provided with non-endometriosis-relevant treatment, and 22 per cent. Were prescribed an oral contraceptive—which at least went some way towards some form of treatment. A further 9 per cent. were given antibiotics, while 7 per cent. were recommended to get pregnant and 16 per cent. were given nothing. Among those who saw a specialist regarding their symptoms, 32 per cent. saw a non-endometriosis specialist first, and 25 per cent. of sufferers saw a gynaecologist only after having seen two other specialists. The survey found that 54 per cent. of sufferers were told that there was nothing wrong with them before they were diagnosed.
Those terribly stark statistics demand a response. We need a systematic approach to treating this condition. That should include support and ring-fenced funding for the development of a network of national centres of excellence for endometriosis, capable of providing a range of treatments. We also need a review of the specialist referral procedures to ensure equity of access across the country.
433 Endometriosis is not an acute disease that generally disappears with treatment. Most women with endometriosis suffer in the long term. It may not be a life-threatening disease, but many sufferers will say that it can destroy a woman's life, and her family life.
Endometriosis sufferers and their families need greater support in coping with, and managing, the condition. The NES has been successful in developing techniques for support and in running self-management courses for endometriosis victims, but that superb provision is limited by lack of funds.
The national society provides a comprehensive range of services to address the unmet needs of patients, and its services are used about 100,000 times a year. It does all that on a shoe-string budget of £200,000. Most of those funds are raised by charitable donation, with limited grants from the Government.
We need to launch a fresh initiative to support the NES in promoting self-management schemes for women with endometriosis, led by lay people. That would follow the Government's lead in placing greater emphasis on patient-centred approaches to illness. At present, endometriosis sufferers feel that they are not at the centre of care, but on the circumference.
It is feared that, as national frameworks for the treatment of acute conditions are rolled out, because endometriosis is not life-threatening it will be ignored. That situation will be reflected in the pharmaceutical industry's priorities in researching and developing other forms of treatment. The severity of the pain of endometriosis sufferers and the scale of suffering by the vast number of women affected means that there is a strong argument for developing a national framework for the treatment of the condition as a matter of urgency.
Is the Minister willing to meet me, a group of my parliamentary colleagues and representatives from the NES to discuss how we might take forward that programme of support for endometriosis sufferers? The issue is too important to too many women for us to ignore their pain. Later this year, on Wednesday 4 July, we will be organising a lobby of Parliament as part of an endometriosis awareness day. At that time I hope that we will be able to report a record of action to give hope to sufferers of this debilitating condition.
Finally, I want to thank and pay tribute to three women. Candice Pires is a brilliant young woman who researched the report that I published on this subject last year. If I can convince her about the future of socialism, I hope that one day she will use her talents in the Chamber. Angela Barnard, from the NES, has doggedly and with courage, determination and commitment ensured that the issue will not be ignored. My constituent Tracey Holliday has, throughout the pain of her condition, worked hard to support other sufferers and to develop the campaign for recognition of the need for the Government to act. Without them, we would not have had the opportunity of this debate tonight. I give them this undertaking: we will not let them down.
§ The Parliamentary Under-Secretary of State for Health (Yvette Cooper)I congratulate my hon. Friend the Member for Hayes and Harlington (Mr. McDonnell) on securing this debate on endometriosis services. This is a subject in which I know he has a great personal interest 434 and to which he is devoting considerable time and energy, and I welcome that. I am particularly pleased to have the opportunity to reply to the debate because this is a complex and often ill-understood disease that affects many thousands of women in this country.
Endometriosis is the second most common gynaecological condition in this country, and 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 have endometriosis. In women who have difficulty conceiving, the rate rises to between 25 and 35 per cent.
My hon. Friend has ably described endometriosis and its effects. 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 make life difficult or even intolerable. The condition can have lasting effects on a woman's self-image, sexuality and fertility. The widespread effects are felt not only by the woman herself but by family and friends trying to cope with the problems that can result. We should not underestimate the importance of endometriosis and the effects that it has on so many people.
Outdated ideas about who is likely to have endometriosis are unfortunately still common. There remains a belief in some quarters that it is the illness of goal-oriented career women over the age of 30. That misconception has now been well and truly disproved. Women in their 20s are increasingly coming forward with endometrial symptoms, and the condition is being diagnosed and treatment offered. The sooner the condition is diagnosed and treated, the better, because that can prevent women from experiencing unnecessary suffering and developing more complex problems that will need more radical treatment.
Endometriosis is not always easy to diagnose because it can mimic or even accompany other causes of abdominal pain. That leads to many women facing uncomfortable, difficult and frustrating delays in diagnosis. Laparoscopy is the only sure way of diagnosing endometriosis. Often in the past, and even today, the pain experienced by sufferers has been dismissed as psychological, while the damage to the pelvic organs continues from the condition.
It is important that at all stages of treatment, medical practitioners discuss the disease and possible treatments fully with the patient. It is vital that each woman understands the options for treatment and understands and agrees with the way in which the condition is handled.
Treatment options can include management of symptoms, medical management of the disease, conservative surgery and radical surgery. Most drug treatments for endometriosis are based on suppressing ovarian activity and hormone release, which abolishes a woman's normal cycle. Generally, such treatments can only suppress endometriosis. I know that many women have found some improvement in their symptoms through using complementary therapies.
For more limited surgery, minimally invasive surgical techniques are increasingly used, allowing a woman to be up and about much sooner following the operation. The radical treatment for endometriosis is a hysterectomy. However, that is appropriate only for women who have completed their families or in cases in which the disease is showing itself in a particularly severe form. 435 With hysterectomy, it is vital that a woman feels psychologically prepared for the impact of such a radical move.
The Royal College of Obstetricians and Gynaecologists has produced guidelines on the investigation and management of endometriosis. The guidelines bring together the latest knowledge and best practice, based on clinical evidence of the diagnosis and treatment of endometriosis. They also examine options for treatment in the light of presenting symptoms and associated infertility. The guidelines have been distributed to all the royal college's fellows and members, and I welcome that piece of work.
My hon. Friend has raised a series of concerns, issues and proposals. I will be happy to discuss them with him and with any delegation that he chooses to bring. There are many areas in which we could have a positive and constructive discussion about some of his proposals.
My hon. Friend referred to increasing awareness among women about endometriosis. Work on that is already done through the National Endometriosis Society. The Department of Health funds the society by giving it a grant to help with its core costs, and a further grant for employing an information officer. The NES is a long-standing, effective organisation that can target information about endometriosis at relevant audiences. We look forward to continuing the close working relationship with the society over the range of its activities, including raising awareness of this serious condition.
There may be other areas that we can explore. There are, for example, new ways of making information available. A section on endometriosis is now included on the NHS website and there may be other ways, particularly using new technology, that could help to raise awareness. However, I recognise that as we use new technology to raise awareness, we must also be conscious of the limitations that it can have in reaching all parts of society. We must ensure that our means of communication do not perpetuate inequalities.
My hon. Friend mentioned improving the awareness and training of general practitioners. I should certainly be interested to discuss that issue further with him. Options in that respect may include taking advantage of the new technologies, such as the electronic health library. This may be an area in which more work can be done. My hon. Friend will be aware that the NHS plan sets out proposals to expand continuing support and training for doctors and general practitioners across the board. This is certainly an aspect that we would be interested in considering further.
The National Institute for Clinical Excellence is undertaking the referral practice project on advice to GPs about referring common conditions. Endometriosis is not included in the project, but the results of the project may give us a guide on an effective way of offering referral 436 guidance to GPs on a range of common conditions including endometriosis. That may be another area to explore.
My hon. Friend raised issues about increased specialisation, especially as regards centres of excellence. When we meet, I should be interested to hear further from him on that subject, although I express a note of caution: given that endometriosis is so prevalent, managing and treating it should be part of the routine work of every gynaecology department. We want every area to use the evidence-based approach, to ensure that gynaecologists are following the guidelines issued by their governing body, the Royal College of Obstetricians and Gynaecologists.
My hon. Friend referred to the importance of a patient-centred approach. That is crucial. Right across the board, patients, rightly, expect to receive more information about their health. The NHS must provide that; it must respond to that expectation. It is not enough to leave the provision of information about medical conditions to voluntary organisations and support groups. It is essential that the NHS—whether through consultants, GPs or specialist nurses—can provide patients with the support and information that they need about their condition.
Individual patients need proper discussion of the problems from which they are suffering and of the options that are available. That patient-centred approach and self-management are very much part of the new NHS plan and the work going on at present. Endometriosis is a good example of a condition where that approach can work effectively to the patient's benefit. There are a variety of options for treatment of the condition, but the right treatment will be that which suits a particular woman's own condition and needs. That will be achieved only by the woman discussing her needs fully with her doctor.
There may be further work on self-management which could be pursued. Work is continuing on expert patients groups—supporting patients to help them to manage their own conditions. That may be another aspect that could be developed to provide support for women who suffer from endometriosis.
I welcome the points made by my hon. Friend. I look forward to discussing them further with him and with any delegation that he chooses to bring. More can be done. The RCOG guidelines and the work already under way have improved matters for women suffering from endometriosis. Decades ago, the condition was often less recognised and sufferers experienced many difficulties in having their condition taken seriously; there has certainly been an improvement since then, but I am sure that there is more we can do. When I discuss the matter with my hon. Friend, I hope that we can come up with a constructive way forward.
§ Question put and agreed to.
§ Adjourned accordingly at eighteen minutes to Eleven o'clock.