Endometriosis Services

[Peter Dowd in the Chair]

I beg to move,

That this House has considered access to endometriosis services.

It is a pleasure to serve under your chairmanship, Mr Dowd. I welcome my hon. Friend the Minister to her place. Many people will recognise that she is a long-time champion of women and women’s health, so it is especially fitting that she is responding today. I am particularly grateful to have secured a debate during Endometriosis Awareness Month to discuss, as a matter of deep importance to women in Ipswich and across the country, access to local specialist endometriosis services.

Endometriosis affects one in 10 women. That means that more than 1.5 million women in the UK are living with a condition that causes chronic pain and infertility, and has profound effects on mental health. Yet for women in Ipswich, specialist care is out of reach. There is no specialist endometriosis clinic at Ipswich hospital, so women who are already living with debilitating pain and who have often waited years for a diagnosis, never mind treatment, are forced to travel to access the care that they desperately need. That is clearly wrong on so many levels.

I want to share the story of one of my constituents, Monica Thomas, who is here with us in the Public Gallery—that sounds very formal, but Monica was in the year below me at Earl Soham primary school 25 years ago. She has battled symptoms for nearly that long; it was 17 years before she finally got a diagnosis. She is now waiting for lung surgery due to having thoracic—as well as pelvic—endometriosis. Despite years of chest pain and breathing difficulties, she was refused referrals to a thoracic specialist and ended up seeking a private opinion. She lives in daily pelvic and chest pain, constantly deals with breathlessness and spends many days bedbound—thankfully not today, Monica.

Monica took her suffering and turned it into determination, resilience and strength. She founded Women’s Health Hope, an award-winning charity dedicated to supporting, advocating for and educating people about women’s health. It shines a light on the unique challenges that women face and creates a safe space in which no one feels alone on their journey. Monica really is a powerhouse and we should all be inspired by her, but also by all the women who have come down from Ipswich today, including Faye Ramsey and so many others. They are battling not just for themselves, but for so many of their friends and family members and many women yet to come—thank you for making the journey here today.

An almost unifying experience for women with endometriosis is having their symptoms overlooked, ignored and dismissed. They are told that they are overreacting and that pain is normal for women. A recent survey by Endometriosis UK found that 82% of respondents had been told by a healthcare practitioner that they were making a fuss about nothing, or had heard similar comments. It takes on average 10 visits to a GP before someone mentions endometriosis. In England, the average waiting time from first visiting a GP with symptoms to getting an endometriosis diagnosis is nine years and four months. Let that sink in: it takes nearly a decade just to get a diagnosis, never mind treatment.

I thank the hon. Member for securing this debate. An estimated 75,000 women in Northern Ireland are living with endometriosis, with an average wait of seven to eight years for diagnosis. Does the hon. Member agree that it is vital that national clinical guidelines are properly implemented and that every hospital trust should have a designated endometriosis lead clinician?

I thank the hon. Gentleman for his intervention and completely agree with him. I have focused much of my speech on the lack of specialist care in Ipswich, but the postcode lottery is affecting people and communities across the United Kingdom, including in Northern Ireland.

I commend my hon. Friend on his incredibly powerful argument. I also commend Monica and other women here today. Women in my constituency have told me that the pain they experienced was described as “normal and expected” by health professionals. I welcome the Department of Health and Social Care’s commitment to renew the women’s health strategy to tackle inequalities in care. Does my hon. Friend agree that any such strategy should include a commitment to provide the right resources, training and funding? Although there is no cure, women deserve the best possible care.

I thank my hon. Friend and could not agree more.

For women with endometriosis who may have already waited years for a GP even to mention the word, and who have already been utterly failed by institutionalised and deeply structural medical misogyny, this is a complete dereliction of duty. The human cost of inaction is devastating. Untreated endometriosis can have an untold impact on someone’s life, including on their education, career, relationships, fertility and mental health: 98% of respondents to Endometriosis UK’s most recent survey said the condition affected their mental health and 63% that there was a significant impact.

Women’s lives are put on hold and even changed for ever. They are our neighbours, colleagues, friends, families, partners, girlfriends, wives, mothers and daughters. We all know women who are suffering and struggling to access care right now. In Ipswich, those lives are further disrupted by unnecessary travel for specialist services that should be available locally.

When we came into government, we pledged never again to neglect women’s health. Honouring that commitment is a moral necessity. We have made significant strides since coming into office, with waiting lists for gynaecology care falling for the first time in years. The updated women’s health strategy has the capacity to make an enormous difference. The Government are investing in research on diagnosis, treatment and pain management, with a new research programme on pain management for endometriosis starting this month.

Endometriosis will be prioritised under the new virtual hospital NHS Online, meaning women will be able to access specialist expertise online much more quickly. If that commitment is to mean anything to women in Ipswich and across the country, however, it must also include equitable access to specialist endometriosis services. National strategies, research investment and virtual hospitals are all welcome and necessary, but digital access cannot replace talking to a specialist face to face. Women in Ipswich need that local provision of specialists.

I thank the hon. Member for Ipswich (Jack Abbott) for securing this vital debate, and the public who are attending in the Gallery.

“I believe you have endometriosis.” When Ami heard those words, she broke down in tears, not because she was scared but because, after 22 long years of unbelievable pain—of being dismissed or told, “It’s your weight,” or, “You are too stressed”—someone finally believed her. In January this year, she had surgery, which confirmed that she had endometriosis. It had progressed so far that both her fallopian tubes were blocked. She is now permanently infertile. Just like that, her dream of starting her own family was over, not because she did not try or because nothing was wrong, but because she was ignored and dismissed. Understandably, that is something that she can never forgive or forget.

Identifying endometriosis is complex, but Ami and too many other women have been utterly failed by our health service. I have one constituent who was so routinely misdiagnosed that it was implied she just had a sexually transmitted infection. Olivia has been waiting in limbo for six months at a time to find out if she can get a diagnosis appointment anywhere in Somerset.

It is a disgrace that women feel that their voice is not enough when it comes to their own health. It is obvious that awareness of endometriosis is far too low among the public and healthcare professionals. Women are waiting far too long to get access to diagnosis and treatment services.

I have two asks for the Minister on behalf of Ami, Olivia and many other women in Yeovil who have gone through the unthinkable. First, will she work with experts and patients to develop better public health messaging, awareness campaigns and greater training for primary healthcare professionals on endometriosis? Secondly, will she meet Ami and others to discuss their cases and explore how the NHS can not only learn from them but formally apologise and offer redress?

It is a pleasure to serve under your chairship, Mr Dowd. I pay tribute to my hon. Friend the Member for Ipswich (Jack Abbott), who shows that it is not necessary to be suffering from endometriosis to be an endo warrior. We champion it because it affects everyone—people in the workplace, our mothers, our sisters and our friends—so I am very grateful that he has brought this debate to the House. I know he has had to try a few times to secure it.

I have not suffered from endometriosis myself, but I have come here to speak about my brave constituent Sanju Pal, who is in the Public Gallery. After six years of fighting a legal battle, she won a landmark case against her former employer for unfair dismissal at the employment appeal tribunal in London. I am proud to say that her case sets a legal precedent for endometriosis to be considered a disability under the Equality Act 2010. I hope Members will bear with me as I tell her remarkable story. The truth is that not everyone should have to fight a legal battle for six years to get their just desserts, but Sanju—a Camden girl—managed that.

In 2018, Sanju was diagnosed with severe endometriosis. She had large fluid-filled cysts on both ovaries, which required an immediate operation. She returned to work a month later in severe pain. She could barely walk and had heavy bleeding because she had pushed herself too much to make promotion to senior manager. She took evidence to HR and told them how much pain she was in, and she was ignored. After three months of a phased return to work, she was sacked without warning. She was told to leave the building and not to contact anyone else. She had worked there for 10 years, and she was told to just walk out the door without telling anyone where she was going and why she had been sacked.

Sanju was sacked on a technicality: she was not ready for promotion within a required timeframe. It is known as an “up or out” policy, and it is used by many corporates. Employees can be dismissed if managers feel that they cannot be promoted within a certain timeframe. The termination letter Sanju received within minutes of the meeting she had did not actually state any reasons for her dismissal. It did not inform her about the right to appeal or refer to the policy that was being followed. She took it to an internal tribunal, where the High Court later found that the panel had completely disregarded the impact statement she had written for the meeting. The internal tribunal ruled that Sanju had not proved that her illness had an ongoing substantial effect on her daily life and stated that many women with endometriosis had no symptoms or mild symptoms, so it could not be taken seriously.

With what the hon. Member has just said about having a greater understanding, does she agree that, while we all have to play a role, the British Medical Association could help by ensuring that the many GPs across the United Kingdom have a greater awareness and understanding of the need?

I agree with the hon. Member. One of the things that has struck me is how few people actually understand what the condition is. I was having a conversation with someone who I would say is a fairly well-informed man, and he said to me, “I thought it was just a heavy period.” He said that because no one had ever talked to him about it. Medical professionals need to have a better understanding, but we need to have a better understanding generally of women’s health conditions overall.

Does the Minister have plans to improve the data collection of women with endometriosis, and, if she does, how does she intend to utilise the data that comes forward? There is a lot more that I could say about the training in the Department for Work and Pensions on assessing disability benefits for women with endometriosis. There should also be a mandate that employers have a gynaecological health policy and human resources training.

There are others who want to speak, so I will round up by saying that the fact that only 11% of employers in the UK have a menstrual health policy is a shocking statistic. For me, it highlights that there is widespread discrimination against women with these health conditions. For as long as our employment rights ignore the gynaecological conditions of millions of British women, the injustice will continue. I applaud Sanju for her legal battle, but I do see it not as just a victory for her. It is a victory for countless women who are suffering and have not had the ability to go through that legal battle.

I have not touched on the fact—although it will be obvious to many people—that I am from an ethnic minority background. Growing up in the household that I did, I never heard the words “menopause” or “endometriosis”. It is not that women around me did not suffer from those conditions; there was a stigma attached to them and it was taboo to talk about women’s health problems. In 2026 we have got to tackle that, and ensure that women from south Asian backgrounds talk to their daughters about it. They must tell them, “If you are suffering, please don’t suffer in silence, because this isn’t something to be ashamed of.”

It is obviously a pleasure to serve under your chairship, Mr Dowd. I thank the hon. Member for Ipswich (Jack Abbott) for leading today’s debate on this crucial issue. Support for women’s gynaecology services is so important. I know from speaking to many ladies, and indeed nurses, back home in Northern Ireland that endometriosis services in particular are suffering drastically. The conversation about that must be had now. It is a conversation that has been had a few times in Westminster Hall, as well as on the Floor of the House through questions.

It is a pleasure to see the Minister in her place. She is earning her money today, as this is the second debate she has responded to. It is a genuine pleasure. I know the Minister has pursued this topic over a number of years as an MP, but now she has the opportunity to respond to the requests from the hon. Member for Ipswich and from me, and I look forward to her response.

Endometriosis is a chronic and often debilitating condition affecting around one in 10 women of reproductive age, yet it remains widely underdiagnosed and clinically misunderstood. In Northern Ireland, many women face long waiting times for diagnosis and treatment, limited access to specialist services, and significant pressures within gynaecology pathways. As a result of all that, patients often endure years of pain and uncertainty, as well as disruption to their daily lives, work, education and family life in general.

I have spoken with numerous young people about this over the years, and have personal experience of it from the women in my life. When my wife and I got married, the doctor told Sandra that, “If you have a baby quickly, everything will clear up.” Well, no it did not—and three babies later, it still had not cleared up. I am not better than anybody else, but I have some knowledge of what it is like for a woman to deal with that every day.

I really value the hon. Member’s contribution, which has been heartfelt and personal. Does he agree that Endo Warriors Northern Ireland deserves credit and acknowledgment for the work that it has done for the women across Northern Ireland who are impacted by this postcode lottery?

The hon. Lady speaks well, on behalf of not only her own constituents but all constituents and ladies across Northern Ireland.

My mother also had various problems with endometriosis over the years, and one of my staff members—a young girl who got married just over a year ago—has had what were probably the worst problems with endometriosis that I had ever seen. Obviously, as her employer, I tried to be as sympathetic as I could so that she could have a few days off work, as she had to go to hospital and for appointments—it was endless. We always encouraged her to get married, and she met the right fella and did so. We hope that the situation will change for her.

The personal experiences of women show the huge, wide-scale issues around birth control. At as young an age as 14 or 15, girls are often prescribed birth control to deal with painful periods, as the hon. Member for Lagan Valley (Sorcha Eastwood) will be aware, given her intervention. The issues often slip under the radar without further investigation, meaning that the same women find themselves worse than ever in their mid-20’s, with undiagnosed endometriosis alongside possible fertility issues, of which the hon. Member for Ipswich gave some examples. Given that conditions such as endometriosis are so widely known to be underdiagnosed at the earlier stages, it is beyond me why more has not been done to ensure that the problems are investigated as early as possible. That shortfall for us in Northern Ireland, and what I suspect is the shortfall everywhere across this United Kingdom of Great Britain and Northern Ireland, needs to be addressed.

We also see issues around the waiting lists, in the indeterminable wait to try to find out what is wrong, and to get surgical treatment for it. The waiting time in Northern Ireland is 18 months. That forces women to use their savings or money that they do not have to go private, as living with the condition is described as unbearable—I know just how unbearable it was for the young lady on my staff, my wife and my mother.

I understand exactly what the hon. Member is saying about the waits; the average waiting time for a diagnosis has now gone up to nine years and four months. Where I am from in Cornwall, an endo café has been set up. I went to it once, and it was heartbreaking to be told so many stories about waits for surgeries and diagnoses. One issue that they raised was that we have only one specialist endometriosis nurse in Cornwall. Does the hon. Member think that having more specialist nurses would help?