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Motion made, and Question put forthwith, pursuant to Standing Order No. 118(6) (Standing Committees on Delegated Legislation),


Question agreed to.


Motion made,

Hon. Members: Object.


Order read for resuming adjourned debate on Question [31 January],

Hon. Members: Object.


Order read for resuming adjourned debate on Question [23 January],

Hon. Members: Object.

14 Feb 2001 : Column 429


Motion made,

Hon. Members: Object.


Motion made,

Hon. Members: Object.


Community Transport Schemes

10.17 pm

Mr. Steve Webb (Northavon): I am grateful for the chance to present a petition on behalf of more than 2,000 of my constituents. It was collected on the streets of Thornbury and Yate and in the Gazette newspaper on behalf of the community transport schemes in my area. Community transport schemes have been a great success in recent years, but they are now threatened and could cease within months.

The petition states:

To lie upon the Table.

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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

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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

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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 went 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 this 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 wasted 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.

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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.

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