Before we begin, I encourage Members to wear masks when they are not speaking. This is in line with the current Government guidance and that of the House of Commons Commission. I remind Members that they are asked by the House to have a covid lateral flow test twice a week if coming on to the parliamentary estate. This can be done either at the testing centre in the House or at home. Please also give each other and members of staff space when seated and when entering and leaving the room.
I am sure that most Members will be aware that this debate was originally scheduled to take place on 18 October. It was delayed so that Members could pay tribute to our colleague and friend, Sir David Amess. His loss was felt acutely across the House, but it is a testament to him that his loss will have touched many well beyond these walls. I know it will have been particularly felt by many of those watching or with an interest in today’s debate, as Sir David was a champion of those living with endometriosis, having chaired the all-party parliamentary group on endometriosis since its inception in 2018. He was a crusader for the cause long before that, after a constituent contacted him about their struggles with the condition. His signature passion, charm and humour will be sorely missed from today’s debate, but I am confident that Members here will make contributions that do justice to a cause he cared so much about and, in so doing, pay tribute to him.
I beg to move,
That this House has considered e-petition 328570, relating to research into endometriosis and polycystic ovary syndrome.
It is a pleasure to serve under your chairmanship, Mr Mundell. Before I begin, I would like to take a moment to remember and pay tribute to our friend and colleague, Sir David Amess. Among the many worthy campaigns he fought for, Sir David was a vocal champion of women suffering from endometriosis. He launched the all-party parliamentary group on endometriosis in 2018, and he chaired it with the intention of raising awareness of the condition and the need to investigate how those who suffer from endometriosis can get support. I am certain that Sir David, ever the advocate, would have spoken in this debate. By continuing to speak out on this issue, we honour his memory.
For convenience, I will read the petition into Hansard:
“Endometriosis and PCOS are two gynaecological conditions which both affect 10% of women worldwide, but both are, in terms of research and funding, incredibly under prioritised. This petition is calling for more funding, to enable for new, extensive and thorough research into female health issues.”
The petition was open for six months and gained over 100,000 signatures, 200 of which were from my own wonderful constituency of Coventry North West. This is not the first time we have had a debate on endometriosis, nor is it the first time that polycystic ovary syndrome, or PCOS, has been brought up in Parliament. The Government’s lack of action in response to previous debates has compelled over 100,000 people to bring the lack of funding for research into these diseases to our attention.
The opening speaker in a debate does not have to speak in favour of or in opposition to a petition. They can choose to outline arguments dispassionately and open up the debate. I will not be doing that. I want to throw my full support behind this important issue. As a healthcare professional in the NHS myself, who has worked with endometriosis and PCOS patients, it is heartbreaking that we still need to plead for research money for two diseases that affect one in 10 women in the United Kingdom. That is over 3 million women.
To advocate for the petition, I will first try to clear up some crucial misconceptions about both diseases. I will also outline the specific actions that the Government must take to support women who suffer from them. Before I do that, I want to briefly explain what endometriosis and PCOS are. PCOS is the most common endocrine disorder in women, affecting one in 10, although it disproportionately impacts black and south Asian women. It is characterised by abnormal hormone production in the ovaries and can, in many but not all cases, cause women to develop cysts. Endometriosis is a condition where cells similar to those in the lining of the uterus are found elsewhere in the body. It affects one in 10 women, although, again, it disproportionately impacts black and south Asian women. Medical jargon aside, both diseases can affect women’s reproductive organs and can, if severe enough, cause fertility issues as one of many side effects.
However, after spending the last few weeks speaking with women suffering from one or both diseases, it has become clear that one of the greatest misconceptions surrounding endometriosis and PCOS is that they are often considered only to be fertility diseases. Thinking of the diseases primarily as barriers to pregnancy or simply as making women’s periods more painful is a gross oversimplification and is, in many cases, totally inaccurate. Both diseases vary widely in severity and in the way they manifest. For example, 12% of endometriosis cases target women’s lungs. Both conditions cause symptoms other than chronic pain. PCOS can cause obesity, excess facial hair and chronic acne—deeply stigmatising symptoms that can shatter a young woman’s confidence and have a debilitating effect on her mental health.
Does the hon. Lady agree that this medical gaslighting is arguably the biggest issue? Patients go to their GP—the medical practitioner they trust the most—and are told it is just a bad period. That is what we really need to change. Funding is a separate argument. That is the main problem we need to overcome before we can truly tackle the issues.
I thank the hon. Gentleman for making an important point, but I think what that highlights is the need to ensure that endometriosis and PCOS are included on the medical curriculum for GPs and healthcare professionals. That is why funding is so important: to make that difference.
I rise to support the petition as well. My constituents have also written heartfelt letters about their experiences; it took one constituent 11 years to receive a diagnosis. Is not the crux of the issue that we need a diagnostic framework to get on top of the conditions quickly so that they do not reach the severity that many women experience?
I thank my hon. Friend for making that important point. I agree, and I will come on to that issue in my speech.
To add insult to injury, funding for symptoms such as excess facial hair and chronic acne has decreased over the years. Endometriosis can cause chronic bowel and bladder-related symptoms and depression, yet I have heard from countless women that, after finally being diagnosed with endometriosis or PCOS, they are told by their GP to come back when they want to get pregnant and are then sent on their way, without targeted treatments.
It is extraordinary to think that there are the same number of women in the UK who have endometriosis as there are people diagnosed with type 2 diabetes. Nobody would suggest that a person suffering from diabetes come back when they decide to get married, so that they can manage swelling in their fingers before buying a wedding ring—that would be absurd. One in 10 people in the UK suffers from asthma, yet it would be completely unthinkable to tell someone with asthma to come back when they decide they want to run a marathon. Endometriosis and PCOS are about so much more than having difficulty conceiving.
Both endometriosis and PCOS can have a massive impact on mental health for a variety of reasons, whether related to pain or fertility. Mental health services have been chronically underfunded for years. Does the hon. Lady agree that the psychological symptoms of the conditions should be prioritised as much as the physical ones?
The hon. Lady is articulating the case extremely well. Does she share my opinion that one reason the conditions are looked at only from the perspective of their impact on fertility is that the medical establishment too often views women’s biology purely from the perspective of incubating babies, and does not think enough about the impact on general wellbeing?
I thank the hon. Member for raising such an important point, which I will come to later. I know from speaking to many healthcare professionals that some are passionate about endometriosis and PCOS but would like more funding and support, so that their colleagues and all within the medical profession get the necessary medical education in their curriculum.
Endometriosis and PCOS are about so much more than having difficulty conceiving, but funding decisions made by Whitehall treat them as though they are not. That is why it is so upsetting, but unsurprising, that the Government response to the petition discussed funding for fertility treatments. In fact, when most young women start to see symptoms at puberty, pregnancy is the furthest thing from their mind.
With that in mind, I will talk about a constituent of mine, a 14-year-old girl who was ostracised and relentlessly bullied by her peers for her excessive facial hair and acne and for weight-related reasons. She experienced such debilitating pain in her lungs and lower abdomen that she was hospitalised during a GCSE exam. After five years of calling hospitals, three painful exploratory surgeries, countless GP appointments and several specialist referrals, she was finally diagnosed with endometriosis and PCOS. The only treatment her GP could offer her was generic birth control pills, which no evidence-based studies confirm as definitive treatment for either disease.
The hon. Lady makes an excellent point. I have experience of young women being given contraceptive pills to deal with what the GP regards as period pain, only to then suffer mental health impacts because of the contraceptive pill. They then find themselves in the difficult position of having to choose between what the GP thinks is a treatment for period pain and the impact of the contraceptive pill on their mental health. Does she agree that that is simply unacceptable?
I thank the hon. Member for raising that important point. I agree that it is simply unacceptable.
Before my constituent left, the GP told her to come back when she wanted to get pregnant, leaving her to figure out how to cope on her own in the meantime. Her story of feeling shamed by her peers and gaslit when trying to get a diagnosis is not unique, as many Members have raised. On average, it takes eight years to diagnose a woman with endometriosis, and years to diagnose PCOS, which brings me to my next point.
The Government need to increase funding to study both conditions. We still do not know what causes endometriosis, effective ways of preventing it from spreading to other organs or effective non-surgical ways of managing symptoms. Some 58% of women with endometriosis had to visit a GP more than 10 times to get a diagnosis, while 21% had 10 or more hospital appointments and 53% went to A&E, with 27% going more than three times, before diagnosis. That is deeply distressing for the patient and a terrible use of NHS resources.
The hon. Lady makes an excellent case and I absolutely support everything she says. I was horrified to hear from a constituent, a qualified nurse, whom it took six years diagnose to diagnose. After two and a half years of daily bleeding and pain, she was finally offered laparoscopic surgery, but was then told by healthcare professionals that the only cure for her was to actually conceive and have a baby, while at the same time being told that she could have fertility problems. Does that not highlight that there needs to be a lot more awareness and education among GPs and healthcare professionals, and adherence to National Institute for Health and Care Excellence guidelines?
I thank the hon. Member for raising that important point, which absolutely highlights that need.
The Government urgently need to invest in research projects and create more streamlined diagnostic practice. That must start with better GP training, as hon. Members have highlighted, so that GPs no longer inadvertently gaslight or misdiagnose anyone with endometriosis or PCOS. It must extend to more accurate and less invasive screening technology to confirm the diagnosis. Once women are finally diagnosed, there is currently no targeted treatment for endometriosis—none at all. Similarly, there is no drug or treatment on the UK market that has evidence-based approval to treat PCOS. We need funding for this research, as well as facilities to carry it out.
There is only one dedicated PCOS clinic in the whole of the UK, and I am proud to say that the clinic is in my own city of Coventry. I visited the clinic recently and spoke with the head researcher, Professor Harpal Randeva, and their specialist nurse, Danielle Bate. They stressed the importance of treating PCOS as a disease in need of its own funding body. Currently, the limited funding for PCOS and endometriosis alike is attached to funding bundles for several other diseases, as is clear from the Government’s response to the petition. We should not be attaching research funding for these conditions as addendums to general funds for fertility diseases or other endocrine diseases. Endometriosis and PCOS impact millions of women in the UK. They are not afterthoughts, and we cannot continue to treat them as such in funding discourse. We should encourage funding charities to set up independent boards for PCOS and endometriosis.
Earlier this year, a Department of Health and Social Care consultation acknowledged the importance of improving research into women’s health. The strategy for that improvement is, according to the Government, now in development, and it would be great to hear from the Minister what progress is being made. I also ask the Minister whether the strategy will commit to establishing independent well-supported funding bodies for research into both endometriosis and PCOS, which are so desperately and deservingly needed.
I will end my remarks by thanking all the brave women suffering from endometriosis or PCOS who continue to fight for increased resources. Without their remarkable self-advocacy and will to advocate for each other, I am certain that we would not be here today. I hope the debate will provide an opportunity for the Government to listen and act.
It is a pleasure to serve under your chairmanship, Mr Mundell. I would like to add my thoughts and recollections of working with Sir David. As he was chair of the all-party parliamentary group on endometriosis and I was vice-chair, we worked very closely together, and I really enjoyed working with him. I found him to be a funny, engaging and generous man. He will be very missed.
As much as I am pleased to be sharing the new role of chair with the hon. Member for Livingston (Hannah Bardell), I do not think that any member of the group will quite get over the loss of Sir David. The last conversation that we had was when we caught each other near the lifts in 1 Parliament Street, if Members know it. He said, “Oh, Emma, Emma! Let’s find out who the new Minister is. We must get them to come to our APPG.”—this was during the reshuffle—“We must tell them about our report. Let’s do this together.” I said, “Brilliant!” He said, “I’ll find out. I’ll get hold of them,” and I said, “That’s great news.” I am very pleased to say that before the debate began, the Minister agreed to meet the APPG, so I thank her for that.
I would like to mention our APPG and the work we did—I can see members of the group here now—and some of the points that we came up with. It was a really detailed piece of work. We listened to thousands of women. Sir David chaired some of the events, as did I and other Members. We were both passionate about following up on the report’s recommendations. The point he made to me was, “It must not be left to gather dust, Emma,” and I said, “No, it must not be left to gather dust,” so we will push on with the recommendations.
One of the things we talked about was highlighting the unacceptable delays in diagnosis and the need for research into diagnostic methods. One of the recommendations was that Government should commission research to discover the cause of the disease. No one really understands why some women have it and some do not, and there is no research on that. Research needs to be done on better treatment and management options, and—the dream for everyone—one day finding a cure.
We need increased awareness. It feels as though we are becoming more aware of the condition, but I still find myself having conversations with people who ask, “How do you say that? What is endometriosis? I have not heard of that before.” We should do anything we can to raise awareness and increase understanding among health professionals of the severity of the condition.
We need to recognise endometriosis in statutory support as a source of chronic disability, and we have talked before about having a debate about that. Sir David and I, along with other members of the group, wrote to the Minister in the Department for Work and Pensions about personal independence payments, disability benefits and women’s difficulty in accessing them for conditions such as endometriosis. The definition and criteria for statutory sick pay do not recognise long-term conditions such as endometriosis. Everybody who needs it should have access to the appropriate care.
I would like to mention the women that I met during my recent Big Conversation event. I pay tribute to Mr Phillips, who is an incredible consultant and an expert in endometriosis, for all the work he does in my local area. The women at the event reported the same things as we have heard from the women here: this is a condition that takes seven and a half years to diagnose, it is not taken seriously and they are left in extreme pain for long periods of time. However, I want to offer some hope to everybody. I am really pleased that Dr Barbara Guinn and Leah Cooksey, a PhD student at the University of Hull, have just been given £10,000—a pitifully small amount, one could argue—to look into researching biomarkers for endometriosis. That would be revolutionary if it came through. The idea is that someone could give a urine sample to identify the biomarkers that mean they are likely to have the disease, without the need for the current invasive medical procedures.
My final, specific ask for the Government concerns the Health and Care Bill. The Royal College of Obstetricians and Gynaecologists is asking that it be made mandatory for integrated care systems to ensure that NHS organisations for which they are responsible conduct and resource clinical research. Can measures about mandatory research into this condition be included in the new Health and Care Bill? I am very sorry that Sir David is not here with us, but we will continue to push for all the recommendations and points that he stood for so proudly in our all-party group.
May I associate myself with your words, Mr Mundell, and with the words of the two previous speakers in regard to Sir David Amess, who was a great personal friend of mine? I was so happy to be able to work with him on this cause. He brought to it his characteristic passion and commitment, and frankly, he was good at keeping us all on the ball. We will miss his leadership, but we will endeavour to make sure that the points he campaigned for are delivered. As has been mentioned, he took up this issue when he was visited by his constituent, Carla Cressy. The cause is one of the main beneficiaries from the sales of his book, “Ayes & Ears”, which is available in all good bookshops; I encourage everyone to make their donation there.
As the hon. Member for Kingston upon Hull West and Hessle (Emma Hardy) has outlined, Sir David led an inquiry for the all-party group on endometriosis. As many as 11,000 members of the public got involved in it, and that is quite an achievement for an all-party group. It is a testament to the fact that he always used good publicity to draw attention to the issues that he really cared about.
For a condition that affects 10% of women, there has been staggeringly little focus on endometriosis. If something affected 10% of men, would we be having this kind of debate? I think not. We really owe it to all the women who suffer for years with the most debilitating and chronic pain and disability because of this condition. I am grateful to the hon. Member for Coventry North West (Taiwo Owatemi) for mentioning the obsessive focus on fertility, because the truth of the matter is that women who suffer from endometriosis start to suffer from it the moment they start their periods.
We could do so much if we had a greater understanding of what a healthy period is. We are all brought up to think, “This is your lot in life; it’s all quite normal.” We might be struggling with the most debilitating pain and thinking that everybody else is going through the same thing, when in fact they are not and we are suffering from very unhealthy periods. We need much more understanding not just in the medical profession, but among girls, so they can be more alive to problems and not wait eight years for a diagnosis. As the hon. Lady said, endometriosis is often diagnosed only when women are trying to get pregnant, by which time so much damage might have been done. If the condition had been diagnosed earlier, treatment could have been given to alleviate it.
We often talk about funding, and one of the biggest challenges in the NHS is not so much the quantum of funding but whether we spend it wisely. If we gave people tools to look after their conditions and enable them to know when they are suffering from ill health, we would reduce the amount that the NHS has to spend on the condition. It is a no-brainer. I am pleased to see the Minister in her place. She has had to listen to me bang on about these issues many times—I never miss an opportunity to beat Ministers over the head when it comes to women’s health—but I know she gets it.
We need to think properly about the wellbeing of women, and the impact that their biology and gynaecology have on wellbeing, and we must think beyond childbirth and pregnancy. Only last year Baroness Cumberlege produced her report “First Do No Harm”, one of the headline conclusions of which was that women are not heard. When women seek medical advice, they are belittled, diminished, shunted along and told, “This is all very normal.” That must stop, because women are important. Women will have healthy pregnancies if they get support earlier. We will all be better off, because we will have less work absence, a more productive economy and less demand on the NHS. It is a no-brainer. I ask the Minister for more research into endometriosis and more awareness so that people can be diagnosed earlier.
It is a pleasure and an honour to speak in this debate. As Members before me have done, I pay huge tribute to and give thanks for the work of Sir David Amess. He worked tirelessly to raise awareness and improve services for those affected by endometriosis. His loss is felt keenly across the House and among those involved in the causes that he fought so hard for, such as endometriosis. It will be a true honour and a privilege to follow in his footsteps with the hon. Member for Kingston upon Hull West and Hessle (Emma Hardy). We decided that it was important to make a cross-party effort to take on Sir David’s role, because that was the spirit in which he approached the issue. In fact, the last conversation I ever had with him was about how we could ensure that the report did not sit and gather dust, and how we could include and encourage local groups in our constituencies. I know we all have many of them in our constituencies.
I want to take a moment to mention and pay tribute to Endo Warriors in West Lothian, where Candice and Claire are tireless campaigners—that is why the fourth largest number of signatures to this petition came from my constituency. I also pay tribute to Endo Bonds, which works tirelessly across Scotland, and to Andrew Horne and Emma Cox at Endometriosis UK. There are many people in this space and a lot of sufferers, many of whom I have met. When we did that report, I took evidence from sufferers in Scotland. The stories were truly heartbreaking. That was in the middle of the pandemic, when those who suffer from endometriosis were having to wait longer than ever to get treatment and diagnosis. The number of Members who have taken an interest and want to speak in this debate shows that so much more time, effort, money and research must be dedicated to both endometriosis and PCOS, which devastates and blights the lives of women and sufferers across the UK.
As we know, endometriosis is a gynaecological condition, but many do not know that it is as common as diabetes. It affects one in 10 women and those assigned female at birth, thus affecting millions across the UK. It is a condition with a wide spectrum of symptoms. I have friends who suffer from it, and it has such a profound impact on their lives. As other hon. Members have said, the response of some medical professionals simply needs to change. We need ongoing medical intervention and research to improve sufferers’ lives.
From an economic perspective, endometriosis costs the UK £8.2 billion per year through treatment, healthcare costs and the impact on work and employment. This is not necessarily about the financial impact, however; it is about the impact on the lives of those who suffer. Despite the prevalence and impact of endometriosis, there is very little research funding for it or widespread awareness about it, unlike with cancer or diabetes. Yet it is ranked by the NHS as one of the top 20 conditions involving pain so disabling that it can prevent sufferers from doing daily tasks. That list includes well-researched and well-funded conditions such as heart attacks, kidney stones, appendicitis and arthritis, to name a few.
Men have held positions of power for centuries and, as the hon. Member for Thurrock (Jackie Doyle-Price) said, if the sufferers were men, we would probably have a solution and a cure by now. The fact that Sir David was so determined to fight, in such an inclusive way, for the women who suffer from the condition is a reminder to us all of the need to take that work forward.
In 2018, only 2.1% of publicly funded research in the UK went on reproductive and menstrual health, down from 4.5% in 2014. In Scotland, we have committed to reducing the time taken to obtain a diagnosis from eight and a half years to 12 months during the life of the next Parliament—that is an ambitious target. So often, the nations of the UK are played off against each other. Of course, this is an area where we should compete, but we also need to work together so that we can share ideas, fresh thinking and opportunities. That is what the hon. Member for Kingston upon Hull West and Hessle and I will do in the all-party parliamentary group. We look forward to working with Members and having many more debates on endometriosis and PCOS so that sufferers do not continue to suffer, as they have done for so long.
It is always a pleasure to serve under your chairmanship, Mr Mundell. I pay tribute to the late Sir David Amess for all his work to establish the APPG on endometriosis, and I am very grateful to him for his efforts.
Like Sir David, I was visited at my constituency surgery by a constituent who has campaigned tirelessly to raise awareness of endometriosis to ensure that other women do not have to go through the pain that she has endured. That constituent, Maddy Howarth, first began to suffer severe stomach cramps aged just 13. By the age of 17, she was visiting A&E practically every month because of the pain she was in and the effects of the drugs that she was taking to manage it, and still the condition went undiagnosed.
Eventually, after several years had passed, Maddy was referred to a gynaecologist for investigative surgery. While waiting to see a specialist for diagnosis, she was forced to give up her home and her job, as she was unable to work through the unbearable pain or access the support that she needed. Then, at the age of just 22, Maddy made the difficult decision to have a hysterectomy to finally stop the pain. I am pleased to say that her health has since improved, but not all women are so lucky.
An inquiry by the APPG last year found that the average waiting time from the onset of symptoms to diagnosis was eight years, and that although nearly all of those with the condition felt that their mental health had suffered as a result, the vast majority have never received any psychological support. That cannot be allowed to continue. Several years ago my partner, Beth, was diagnosed with endometriosis. She has had to suffer intense pain, but she is still on the waiting list for surgery. Needless to say, this issue is very close to my heart.
We all know about the impact that the pandemic has had on NHS waiting lists. Countless constituents have contacted me about how difficult they have found it to access a GP appointment, and about the repeated delays to routine operations. Women with endometriosis have lived through that experience for decades. To stop more women and young girls going through the life-altering pain felt by those such as Maddy and Beth, and if we are serious about building a more resilient and preventive healthcare system, we have to change. That means cutting waiting lists for diagnosis, improving our clinical understanding of the condition, creating a dedicated care pathway and providing stronger mental health and physical support for those currently living with stage 4 chronic endometriosis. This will not be an easy task, but it is a necessary one.
Now is the time for these difficult conversations about how we view and treat women’s health, and now is the time for us to end once and for all the unacceptable situation in which women are left living in fear with unbearable, undiagnosed and untreated pain. We must change that now.
It is a pleasure to serve under your chairmanship, Mr Mundell. I also want to pay tribute to Sir David Amess because, on coming into Parliament, I found it very impressive that for once a man was taking up an issue that affected so many women. I know it is usually the women in the House who put these issues forward, so we definitely have to pay tribute to Sir David Amess for the feminist that he was in that respect.
Even though the condition is so common and the impacts are so devastating, we have heard time and again that research is woefully lacking. PCOS is definitely one of the leading causes of fertility problems in women, and endometriosis can be as well. It can also have a devastating impact on someone’s self-esteem, and if not properly managed, it can lead to additional health problems later on.
I know this because I have endometriosis. My own experience began when I was young, and I did not think it was a particular issue. I always had extremely painful periods, and that was just life. With all these things that have to do with women, we are told, “Once you have a baby, you’ll be fine,” and on being diagnosed with endometriosis or potentially having it, I was told, “Once you have a baby, you’ll be fine.”
I remember that when things began to get bad one night in 2017, I was sitting up in the office of my right hon. Friend the Member for Hackney North and Stoke Newington (Ms Abbott), for whom I worked. I began to feel twinges while I was working late, and things got so bad—the piercing pain got so bad in my side—that I had hobble over the river to St Thomas’s Hospital. I was in so much pain that I was kept in for the next couple of days.
I then began waiting for an appointment from my GP. I had to wait so long for it that I called up and asked, and they were confused about what they were meant to do next. It was only after many months that I was able to get that appointment, and I then had to wait for the next appointment time, as we often do. That was a longer process, which went on for another two years.
Throughout that time, I would have pain every day, as I do now, and I would have to wake up quite late, because I would have pain mostly in the night-time. For the majority of women, their bosses are not so understanding. However, thanks to my right hon. Friend, I was able to make it work with my times by coming into work slightly later and working slightly later to work around my pain. How many employers would be that understanding?
Eventually, I was given a date for a laparoscopy in May 2019—I will not mention the hospital, because it will be hearing from me—and it went so badly it was unbelievable. I was in and out of there so quickly: I had the procedure, those involved woke me up and told me they had not found anything, and they said I would come to soon and would go home. I was in so much pain that I could not walk, and instead of treating me any further, they said there was nothing they could do for me, put me in a wheelchair—still in the gown I had had on for the operation, with blood on—and wheeled me round to A&E.
Obviously, those in A&E were absolutely fuming, because the staff are not meant to do that, and they sent me back up to the gynaecological ward. Again, I was gaslighted there, as somebody told me that I would have to think about what I was doing because I clearly just had some sort of muscle pain. I tell this story today, with not much time, because I cannot tell you how many women have experienced that.
My diagnosis took five years. Thankfully, I went to King’s College Hospital, where I was born. I probably should have gone there first; I turned out okay, which shows that it is a good hospital. It was able to treat my condition, and I instantaneously felt the relief of having the endometriosis removed, as much as that is possible. But it grows back, so I am now on the list, with other women, waiting for further treatment. We cannot keep women waiting this long.
I can say from experience that the amount of pain you go through really does affect you every day, so I say to Members right across the House that if they ever see me looking at them slightly strangely, unless they have said anything particularly obnoxious, it may just be because I am in a lot of pain. Thank you very much, Mr Mundell, for allowing me—oh no, I still have some more time.
It is a pleasure to serve with you in the Chair this afternoon, Mr Mundell. I associate myself with your remarks and those of others during this debate about our colleague Sir David Amess, and my thoughts and prayers are with his wife and kids at this very difficult time.
I am pleased to participate in this debate today in order to recognise publicly the great work that Endo Borders, set up by Tao McCready—who lives in my constituency—is doing on behalf of women who suffer from this terrible condition. Mr Mundell, as the other Member of Parliament for the Scottish borders, I know that you are familiar with that group and the important work it is doing in our area. Tao was diagnosed with endometriosis in 2017, following multiple misdiagnoses, and went on to set up Endo Borders in 2019, giving up a career to focus on supporting the local community and raising awareness of the condition. Not only is it a fantastic group for women in the Scottish borders; it also reaches out to women across the country who are suffering from endometriosis. I had the privilege of attending a recent meeting of Endo Borders, and was really impressed by the courage of the women who were sharing their stories.
Endo affects one in 10 women in the United Kingdom, but despite its prevalence not much is known about it and relatively few people have heard of it—I certainly had not until I met that group. There is currently no cure for endo, and its exact cause is unknown. In Scotland, the average diagnosis time is eight years. The difficulty is that there is not a specific list of symptoms for endo, as the condition presents differently in different women. Research by Endometriosis UK found that 54% of the UK population were unaware of the condition, and 45% of women were unaware of its symptoms. To put that in perspective, a far greater proportion of the population has heard of diabetes, and endometriosis affects a similar number of people.
What can be done to help women suffering from this condition, particularly those who live in my constituency in Scotland? First, clearly awareness about endometriosis needs to be raised, and it is crucial to ensure that Scotland comes into line with England by providing menstrual health education at school. Without learning about the menstrual cycle at a young age, conditions such as endo will continue to go unrecognised, marginalised and misunderstood.
Secondly, although there are three specialist centres for endo in Scotland, the all-party parliamentary group on endometriosis found that because those services have been commissioned at a local level, it can sometimes be difficult to get referrals to the different health board areas in which those services are based. It cannot just be a postcode lottery. My colleague Rachael Hamilton MSP recently called on the Scottish Government to present a credible plan for how to reduce their own waiting time target for diagnosing endometriosis from eight years to less than one year, and I eagerly await the publication of that plan.
Finally, I am absolutely clear that more can and should be done to improve research into this condition that affects so many women and the way they live their daily lives. I therefore support calls to ensure that funding is directed towards new research into the diagnosis and treatment of this terrible illness, ultimately focusing on a cure.
To conclude, I thank the petitioners for securing this important debate, and the team at Endo Borders for the invaluable work they do to support women suffering from this terrible condition.
It is a pleasure to serve under your chairmanship, Mr Mundell, and I congratulate the hon. Member for Coventry North West (Taiwo Owatemi) on opening the debate so ably. As she noted, on average, it takes eight years for a diagnosis of endometriosis to be made. Unfortunately, in Wales it now takes nine years on average, compounding the suffering of people who suffer from marginalisation and poverty in their communities in many parts of Wales. It is essential that that be addressed as soon as possible by the Welsh Government.
I also thank my constituent Kate Laska, who for a number of years has been a tireless campaigner for greater support for those who suffer from this condition in Wales. She has shown remarkable determination and has been working essentially alone on this matter. As part of her campaign, Kate has pushed for menstrual products to include labels that list their ingredients. Men and women—everyone—deserve to be empowered with vital information about the products they use, and to be assured of their safety; menstrual products are no different. Is the Minister aware of any ongoing discussions on that issue with the Office for Product Safety and Standards? I am not drawing attention to the issue to raise undue concerns, but my constituents would certainly be glad to be reassured that it is receiving proper attention.
Caseworkers also highlighted the lack of specialist support available in north Wales, which means that lots of patients have to travel across the border, to the excellent Liverpool Women’s Hospital, to have attention. The long distance to travel is, of course, a further burden. There is also, I am afraid, an almost complete lack of service through the medium of Welsh. The ability to discuss a condition of this nature in the patient’s language of choice is a particular issue, and not only in Wales but throughout the UK. I do not know how much attention that matter has had, but I draw it to the attention of the Minister.
Endometriosis is not just a health issue for those with the condition. It is debilitating, there is a lack of support and, as hon. Members have mentioned, statutory sick pay is available to an employee for a maximum of only three years. That penalises those with chronic long-term conditions such as endometriosis and others. Many of those severely affected have struggled to access personal independence payment and universal credit. Clearly, we need more understanding and education—specifically, more research. I end by quoting Kate Laska, who told me:
“Women with endometriosis suffer in silence and very often alone because no one around them can imagine their pain.”
It is a pleasure to serve under your chairmanship, Mr Mundell. I thank the hon. Member for Coventry North West (Taiwo Owatemi) for securing and leading this important debate. More importantly, I also thank the hon. Member for Streatham (Bell Ribeiro-Addy) for her own personal story, which I found very moving. In common with everyone else in the Chamber, it would be remiss of me not to mention Sir David Amess and the very important work that he did as chair of the all-party parliamentary group.
As we have heard, endo affects one in 10 women in the UK. It is a common, chronic, complex and fluctuating condition that brings about unimaginable pain. Like many Members here, I first found out about endo shortly after I was elected; I had never heard of it before. It was in a constituency surgery, where Katie came to meet me. She talked about her debilitating pain, the impact on her mental health and her endo sisters who were taking their own lives because of the pain while awaiting treatment. She described the gaslighting she had to go through—“It’s just a bad period.” That is just the norm for anyone suffering from endo, and we should all be ashamed of that.
It is clear from today’s debate, from previous debates and from constituents across the UK that, despite the severity of the condition, it is still taboo to talk about women’s health and gynaecological conditions. I remember speaking in last year’s debate on the Cumberlege report. It is a damning and concerning fact that we talk about and listen to women’s health issues only when men talk about them. Many in this Chamber have been giving their own personal stories, and I fear that we are at risk of still not truly understanding the issue because men are not talking about it. We spend so much more money on erectile dysfunction than on endometriosis—that shows where our priorities are.
Workplace attitudes often do not help. We have heard the stories over and over again in the House when it comes to endo: women are often not believed or supported by doctors, employers or even loved ones. It is shocking that in 21st-century Britain women are still being dismissed as lazy, unreliable, dishonest and a nuisance in the workplace. In the 2020 BBC survey on endo, almost all the women responded by saying that they felt that their careers had been hampered by having the disease.
If appropriate workplace support for employees suffering from endo and polycystic ovary syndrome is to be obtained, we need business leaders and managers to be equipped with the necessary information and knowledge to be compassionate when dealing with these cases. We should begin by encouraging employers to become endo-friendly, making sure that there is access to support for all those who suffer from it.
The current definition has been highlighted by the hon. Member for Kingston upon Hull West and Hessle (Emma Hardy). Unfortunately, endo sisters do not qualify for statutory sick pay because the condition is long-lasting and chronic. That is something we can quite easily and quickly fix. We have already heard that before covid it took, on average, eight years to be diagnosed with endometriosis. That backlog will only have become worse. We need to factor in GPs’ ability to understand the condition better. We can do so much more, and we have a duty to do so.
In conclusion, endometriosis costs the UK £8.2 billion per year through treatment, healthcare costs and the impact on work and employment. We need to deal with this, and not just from a financial perspective but from a moral one.
It is a pleasure to speak in the debate with you in the Chair, Mr Mundell. I thank my hon. Friend the Member for Coventry North West (Taiwo Owatemi) for the way she opened this important debate.
Endometriosis and polycystic ovary syndrome affect one in 10 women and those assigned female at birth in the UK. As we have discussed, that means that over 1.5 million individuals are enduring a painful condition that can affect every aspect of their life. It is staggering that these conditions are so under-recognised. Common symptoms for a diagnosis include severe pain and heavy bleeding, but for those who have these conditions, that description barely scratches the surface of the reality of living with such a severe gynaecological disease.
One constituent wrote to me with a powerful testimony about her experience of living with polycystic ovary syndrome. She told me of the wide range of debilitating symptoms of her condition. She felt lacking in confidence and scared for her health and future. She felt that no one understood her, and she felt alone and overwhelmed by the condition. Constituents who have contacted me about endometriosis or PCOS report significant diagnosis times of between four and 14 years. This is an unacceptable amount of time for patients to wait while not getting the right care or even having a name for the condition that is causing their symptoms.
I had endometriosis and it had a big impact on my life. I was not diagnosed until the age of 32. I had multiple surgical interventions over more than 10 years. Surgery, as we have heard from my hon. Friend the Member for Streatham (Bell Ribeiro-Addy), does not cure endometriosis; it just comes back and back. Delays in diagnosing and managing endometriosis and PCOS can affect quality of life. Worse than the impact on quality of life, they result in a dangerous progression of the disease.
We have all touched on the work of the all-party parliamentary group on endometriosis, and I join Members in paying tribute to the work of Sir David Amess as its chair. There was an excellent report produced following an inquiry. I recommend that report and its 34 recommendations to the Minister, particularly those on investment in further research into gynaecological diseases, so that the waiting time for diagnosis can be reduced.
To these recommendations, we must now add the need to address the gynaecology backlog made worse by the pandemic. NHS England data indicate that the waiting list for gynaecology services has seen the largest increase of all the specialties since the pandemic began. Endometriosis UK’s recent survey showed that four fifths of patients with confirmed or suspected endometriosis had had NHS appointments for their condition postponed or cancelled due to the pandemic, and a third had not been given a new appointment date.
Sarah Lambrechts told the Health and Social Care Committee about her experience of having surgery for endometriosis delayed due to the backlog caused by the pandemic. The delay is, in her case, going to be for 18 months to two years. She said:
“I am 25 years old. For the next 18 months or two years—however long—I cannot plan my life. I cannot plan my career progression. I cannot plan to have a family. I cannot take care of myself some days.”
It is very sad that Sarah and thousands of others have experienced such an impact from the disease. We need urgent action so that those who have lived with the debilitating symptoms of endometriosis and PCOS for so long are not suffering because of a long wait for treatment caused by the backlog in NHS care. We owe it to those who have lived with these symptoms, often for many years, as I did, to reduce diagnosis time, improve treatments and, eventually, find a cure.
I associate myself with your comments about Sir David, Mr Mundell, and those of other hon. Members present. Sir David and I shared a passion for animal welfare and for women’s health, so I put on the record my thanks for all his incredible work to raise awareness of endometriosis. Among many other things, that is Sir David’s legacy and a testament to him as a fantastic campaigner.
As my hon. Friend the Member for Coventry North West (Taiwo Owatemi) rightly said, endo and PCOS are two gynaecological conditions that affect roughly one in 10 women—10% of all women or all those assigned female at birth in the UK today. Some 1.5 million people live with endometriosis and deal with symptoms ranging from chronic pain and fatigue to infertility.
Yet our research and awareness of these conditions still lags behind. We have already heard at length that the average diagnosis time for endometriosis in the UK is almost eight years. For women dealing with those symptoms and living with that pain, that is simply not good enough. In the worse cases, I am aware of women who have been told that the symptoms that they are experiencing and the debilitating pain that they are living with—like my hon. Friend the Member for Streatham (Bell Ribeiro-Addy)—are a normal part of life or that they are somehow imagined or exaggerated.
Women with endometriosis have double the risk of infertility of other women, yet many report receiving little information from their doctor about the impact of their diagnosis on their future ability to have children. They are just told, “Try and have a baby; it might help.”
It is clear that the debate comes at a fortunate time, given that today marks the start of National Fertility Awareness Week. Sadly, many women with endometriosis and PCOS have been left under the impression that they will struggle with their fertility, even though research from Endometriosis UK suggests that 60% to 70% of people with the condition can get pregnant spontaneously. As someone who has experienced infertility, I know at first hand how difficult, challenging and upsetting such news can be.
Many women have struggled to get access to the care they need to understand and manage their fertility, and have been baffled to find out that, due to a lack of research, the link between endometriosis and fertility is not properly understood. National Fertility Awareness Week is an important opportunity to raise the issue and I would be grateful if the Minister could outline what steps her Department will take to ensure that people with PCOS and endometriosis understand the impact of their condition on their fertility.
The petition rightly calls for greater research into cures and treatments for endometriosis and PCOS, and I look forward to hearing from the Minister what actions her Department will take to support that work. I know of women who do not want children who have felt that their pain and symptoms were not being treated seriously by medical professions simply because they were not directly related to fertility.
Not only can the symptoms have a major impact on people’s quality of life, but there is also evidence that they have a major impact on women’s ability to get on in the workplace. As we have heard, women experience a lack of understanding from employers, from an outright dismissal of their illness as “women’s problems” to losing their jobs for taking too much sick leave. Greater research and understanding of endometriosis are vital, as is education on the condition and its impact.
For too long, women’s health has not been taken seriously. Although I am glad that progress has been made in Wales and across the UK, as outlined by my hon. Friend the Member for Coventry North West, we still have a long way to go to ensure that conditions such as endometriosis and PCOS are taken seriously and understood not just by medical professions but by everyone from employers to teachers. For the 1.5 million women living with these conditions, we cannot afford to wait.
I appreciate your fitting me in, Mr Mundell, and I apologise for being unable to bob throughout the proceedings. Two hon. Members—the hon. Members for Thurrock (Jackie Doyle-Price) and for Livingston (Hannah Bardell)—have asked, “If 10% of men were in this situation, would it be the same?” It is a fair question, and the right one to ask. I am sad to say, as a man, that the answer is not one that we in this House should be proud of.
I say that honestly and honourably because I knew little of endometriosis or polycystic ovary syndrome, like the hon. Members for Bury South (Christian Wakeford) and for Berwickshire, Roxburgh and Selkirk (John Lamont). Like other hon. Members, I have learned an awful lot through the strength and courage of the individual constituents who have come to see me and share personal and intimate information, around which there is a taboo.
One lady, whom I have known for more than 10 years, only told me in the last two weeks that, at 16 years old, she found herself before the GP with a suspected diagnosis of endometriosis and was advised that it would be a great help if she were to have a baby. No GP should look a 16-year-old in the eye and suggest that pregnancy is the answer to a medical condition, yet that was the experience she had. One constituent was put on an urgent waiting list in 2017; she is still awaiting surgery for her condition. She was a care worker. Care work is a physically demanding job, so she had to stop. She applied for universal credit, but was turned down and advised to find work in a more manageable setting. That is not good enough.
I am therefore encouraged to hear about the work of the APPG on endometriosis. I would be keen to get more involved. I am here because of the stories that have been shared with me. What is happening is harrowing and wrong. The Minister is not responsible for our devolved nations, but I like to think that here at Westminster there is that convening authority across our United Kingdom. None of our trusts in Northern Ireland is accredited for surgery in this respect—none of them. The Western Health and Social Care Trust was—that is Londonderry, the second largest city in Northern Ireland—but it has lost its accreditation. The Belfast Health and Social Care Trust was on its way to getting accreditation, but because of coronavirus and no surgery, it cannot get accredited; it has no plans to do so. I asked the question, “What are you doing with patients who need help?” And the answer was, “We are not referring individuals on at this time.” I therefore ask the Minister: across Scotland, England, Wales and Northern Ireland, if there are services available and our constituents could use them from Northern Ireland, please make them available. Please find out the exact state of play across the trusts and across the four nations and provide the assistance that these ladies so desperately need.
It is a pleasure to serve under your chairship, Mr Mundell. I am grateful to the hon. Member for Coventry North West (Taiwo Owatemi) for leading this important debate so powerfully, and to all the women—so many women—who signed the petition, including the 241 in my constituency of East Renfrewshire.
Endometriosis and polycystic ovary syndrome affect so many women, yet we hear so little about these conditions day to day, so this debate is really important, because it allows us to focus on areas such as research, where I will be seeking assurances from the Minister. It is really important, too, that this afternoon we are shining a light on these conditions and helping a bit by letting people know about the reality and the challenges of daily life for women who are affected.
I will not speak a great deal about endometriosis today, not because it is not important—it absolutely is—but because colleagues from across the Chamber have spoken so knowledgeably and eloquently. But I would first like to echo what others have said about Sir David Amess and the huge contribution he made. And I would like to reflect on a few things that we have heard that bear further examination.
My hon. Friend the Member for Livingston (Hannah Bardell) spoke so eloquently about the support of women campaigners. I really take my hat off to women like that. They are amazing people. The hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) noted the importance of recognising the mental health impact of both these conditions. And we have heard from hon. Members across the Chamber about the impact on people’s working lives. But I think the hon. Member for Streatham (Bell Ribeiro-Addy) spoke most powerfully. She spoke so well about her own experience—a really hard experience—as a woman with endometriosis. I hope that the Minister is able to reflect on that in the context of her response and the need for research.
I want to concentrate today on PCOS. I have been contacted by several constituents who have PCOS, and I have PCOS myself. Like many women with PCOS, I have not really spoken it a great deal—and to be perfectly honest, I had not intended to speak about it in the context of my work. It is a personal thing, but I decided that I would speak today because the silence around this condition really has to change. So many women are affected by PCOS, but so little is said about it, written about it and, frankly, known about it. We really need to shine a light on this condition and to push for far greater understanding and a far greater commitment to the research that can make a difference.
I was diagnosed with PCOS about 20 years ago, but to be honest, even though I initially spent quite a lot of time trying to research it myself, that was difficult, because much of the information that women would want to find and anticipate being able to find does not actually exist, because of the glaring lack of research. Like so many other women with PCOS, I have been in the dark most of the time, just because there is not enough understanding out there of this condition, which has certainly impacted on my day-to-day life.
I see that the Royal College of Obstetricians and Gynaecologists has helpfully put this in a nutshell for us all. It has established that less than 3% of the overall medical research funding in the UK is focused on women-specific diseases, such as endometriosis and PCOS. They are holding back women’s health outcomes and experiences and holding back our lives, yet that is the kind of priority—less than 3% for women-specific diseases—that these conditions are given. I reflect again on what the hon. Member for Streatham described.
I am pleased that the new Scottish Government have in their first 100 days published a new women’s health plan that includes several actions to improve access to appropriate support, speedy diagnosis and the best treatment for endometriosis. That is practical progress, and I hope it will have a knock-on effect for PCOS. That kind of practical action is really important and will make a difference to people’s daily lives, but we are working with one hand tied behind our backs if we do not focus on the dearth of research on, and lack of conversation around, both these conditions.
That is one call from Verity, the national PCOS charity, which does a fantastic job despite being volunteer-run. Those volunteers deserve our grateful thanks for their work and focus. We might want to take a wee minute to wonder why this condition, which affects up to 10% of women, has to rely on volunteers, however professional, influential and brilliant they are—they are all that. That is not illustrative of a collective appreciation of the harm PCOS causes daily to women throughout their lives.
The fact is that, like endometriosis, the cause of PCOS is unknown, and there is no cure. That can be quite devastating to hear, because as we have heard, some of the symptoms can have a significant impact on daily life—on what we would call normal life—and in a variety of ways. Bear in mind that some women will experience multiple issues once, including irregular periods, or a complete lack of periods. Again, that is not a topic I ever thought I would touch on at my work.
Does my hon. Friend agree that her speech and that of the hon. Member for Streatham (Bell Ribeiro-Addy) show the very reason why diversity in our Parliament, including women who will come forward and be so brave as to share their personal experiences, is absolutely crucial?
My hon. Friend is right: we have to listen to women’s experiences, and I think the hon. Member for Bury South (Christian Wakeford) referenced that too. That really matters here. I never imagined talking about my experience of menstrual irregularity, ranging from nothing at all to a full, continuous six months of periods, which was both debilitating and, frankly, somewhat concerning.
It is fair to say that these are the kind of challenges that women would really rather do without. We heard about the irregular nature of fertility, including irregular ovulation, or no ovulation, which is an issue for women with PCOS, who of course probably do not know that until they find out that they are not pregnant when they are trying to be; reduced fertility—difficulty becoming pregnant—can be the reason why many women become aware that they have PCOS. That was certainly my experience, and it explained many other things. I may have a wee glimmer of light in what is possibly a quite depressing contribution: I have two amazing sons thanks to just a wee bit of PCOS-related medical assistance.
I can tell hon. Members, as we heard so eloquently from others, that women with PCOS can have a difficult time in many ways, particularly with issues such as hirsutism—unwanted facial or bodily hair. I cannot emphasise strongly enough how women are influenced by this. Again, there is no solution. Imagine the impact on the self-esteem of young women in particular. However, PCOS does not only affect young women, and young women are not alone in facing a severe impact on their life from these kinds of issues. None of us wants to sprout a beard, feel unable to go swimming or have to cover up from head to toe. Noting symptoms as oily skin and acne do not really cover the magnitude of those either.
PCOS is often assumed to related only to fertility, and that is a big issue, but all these other issues affect how the world sees us and how we present ourselves to the world. Thinning hair—male pattern baldness, basically —2014 is crushing to have to deal with. Being overweight is so common among PCOS-affected women because our bodies metabolise differently. For some women, that has a significant impact on both their health and on how they interact with the world. There are also depressions and mood changes. If I went through everything, we would be here all day. So many things have a connection to PCOS but, again, we cannot say exactly what or why because the research is not there.
As a younger woman with no idea of where to go for support, it was heartening to hear of women, such as the hon. Member for Streatham, speak about communities supporting one another. That is really helpful when diagnosis is not straightforward or where the issues are not resolvable, but we need to do better than that DIY approach. For young women and teenagers, it is rubbish in the age of Instagram to have to deal with unexplained weight gain or hair growing where it should not, and worries about the future. As for menopause, I have no idea what it will mean, but I would certainly like to know. When I looked into aging women, the best I could establish is that it is thought to be a medical black hole. That is simply not good enough, and that is why research is needed.
To conclude, I thank all the women who have been in touch with me about this matter—so many of them. I thank Verity PCOS and my constituent Anji Sandhu, who is in the process of setting up a group to raise awareness of PCOS and its challenges so that we can talk about it more. That will help because so many women are affected and rely on us here to take it seriously. At the moment it feels to them like a big, dirty secret, and that is what needs to stop. That is why we need research, and I hope that the Minister has something positive to say on that.
Mr Mundell, you talked about doing justice to Sir David’s memory. Like possibly everybody in this place, my friendship with David was one that was funny and light. I loved how serious and passionate he was about the issues that he cared about, so I think we have done justice to his memory today. Everybody can be proud of that, none more so than my hon. Friend the Member for Coventry North West (Taiwo Owatemi), who, as she said, could have talked dispassionately about this issue, but it was much better for her not having done so.
Similarly, I always have pride and admiration for anybody who goes down the petitions route to secure a debate in this place, because it is very hard to do. The fact that they have been successful demonstrates the strength of feeling. If that petition came from a place of frustration that these two conditions, endometriosis and polycystic ovary syndrome, lack public prominence, I hope this debate is a part of tackling that and that they take pride in that.
There were too many contributions to cover individually, but in aggregate colleagues have written for the Minister a manifesto for where to go next. There were common themes—a desire for better diagnosis and better understanding in primary care—and strong themes around the desire for more research and better support at work or through the welfare system. I hope the Minister will take from that four very concrete things that can be done quickly and can be focused on.
There were contributions that I did not want to miss, particularly from my hon. Friends the Member for Streatham (Bell Ribeiro-Addy) and for Worsley and Eccles South (Barbara Keeley), and from the hon. Member for East Renfrewshire (Kirsten Oswald), who talked about their personal experiences. I hope that the many people watching this, either in the Public Gallery or online, who are themselves experiencing these conditions, took some comfort from hearing about the lives of their representatives and how brave and willing they are to tell their own stories, which really enriched the debate.
My hon. Friend the Member for Kingston upon Hull West and Hessle (Emma Hardy) and the hon. Member for Livingston (Hannah Bardell) are the new co-chairs of the all-party group on endometriosis. We can have a lot of confidence in their leadership of that important parliamentary group. They brought hope in their contributions, so that gives us optimism for the future.
Before I make a couple of points of my own, I want to reflect on the points made by the hon. Member for Thurrock (Jackie Doyle-Price) about the gendering of healthcare in this country. Once again we saw great parallels from the debates following the Cumberlege review and the same messages coming back. To be clear, Mr Mundell, there is a one in 10 chance that either of us might present to our GP with erectile dysfunction. I know for certain that the GP would not say to either of us to come back when we wanted to have a child, and they certainly would not suggest removing the offending organ. Just as we would not tolerate that attitude, we should not tolerate it for anybody in this country.
Turning to endometriosis, Sarah Harris is a 23-year-old freelance journalist from my city of Nottingham, who has written about her experience. I will read a couple of paragraphs because they explain powerfully about life with endometriosis. She wrote:
“It’s hard to remember a time in my life where I wasn’t in pain. Memories of my youth are intertwined with flashbacks; hiding in toilets as blood soaked through my primary school uniform, curled up on the floor of the nurse’s office during secondary school whilst clenching my stomach in agony, skipping lectures in the first few weeks of university as I changed my sanitary pad for the third time that hour.
For a long time, I thought this life was normal. After all, from the age of 12 onwards doctors had been telling me that this was all just a ‘part of being a girl’ and I had to ‘deal with it’. By the time I realised this life was in fact far from normal, it was too late.”
Sarah’s story is not unusual. We have heard that the average diagnosis takes about eight years. Last year’s parliamentary inquiry found that nearly 60% of those with symptoms who were later diagnosed with endometriosis had visited the GP more than 10 times; one in five had had 10 or more hospital appointments; more than half had gone to accident and emergency, and one in four had gone more than three times—all of that happening before diagnosis. That is a real system failure. To put it in pounds and pence—if we really have to—that is more than £8 billion a year, through treatment, healthcare and the impact at work. It is a very significant challenge which behoves action.
Similarly, PCOS affects one in 10 women. We know that while there is no cure, there is treatment. PCOS can exacerbate long-term health conditions such as cancer and type 2 diabetes and, similarly to endometriosis, diagnosis can take many years. There is evidence of a genetic link and, as my hon. Friend the Member for Coventry North West said, a higher prevalence in certain ethnic groups, such as black and south Asian women. Again, it is something that Parliament ought to get a grip on. Those significant challenges are happening at a population level. As I said, the common theme is that it happens to women and those assigned female at birth.
We are currently debating the Health and Care Bill in Committee, which resumes for the final day tomorrow. We have discussed issues such as women’s health, reproductive health and the Cumberlege report on multiple occasions. There is nothing in the Bill on those issues and, I am sad to say, our amendments have not been accepted. What I have heard consistently from Ministers is that the women’s health strategy is coming and that action will be taken through that. I hope that the Minister in closing will make that commitment herself, because an awful lot of people are putting an awful lot of stock in that strategy.
I particularly hope that we will hear a commitment on research, because women’s health is under-researched. The “UK Health Research Analysis 2018” report showed that only 2.1% of publicly funded research in the UK was on reproductive and menstrual health, which is less than half of what it was in 2014. Of the more than 8,000 research projects funded by the National Institute for Health Research—an outstanding body—10 were on endometriosis and one was on PCOS. There is clearly significant space to do much better on research in this country. Only last year, the Australian Government committed $9.5 million to that research—we need that sort of ambition in this country as well.
I want to leave the Minister plenty of time to come back on all the important points that have been raised, so I conclude by saying that I think colleagues have written a really good manifesto for her. We want better diagnosis, better understanding in primary care, more research and better support at work or through the welfare system.
I thank the hon. Member for Coventry North West (Taiwo Owatemi) for securing the debate, as well as all the petitioners who made it happen. I join everyone in paying tribute to Sir David Amess; I know he would have been here, holding my feet to the fire on what I was going to do about the important issues that have been raised.
Members on all sides of the House have spoken about the challenges faced by women suffering from endometriosis and PCOS. I pay tribute to the hon. Member for Streatham (Bell Ribeiro-Addy), who could not have put it better on not only the struggle for diagnosis, but the trauma of going through treatment. That is not an uncommon experience, unfortunately. There are serious issues to address. As my hon. Friend the Member for Thurrock (Jackie Doyle-Price) said, the conditions affect a significant number of women across the country. We are not talking about a small problem; its effects are on a wide scale.
Members have spoken about the pain, the heavy periods or lack of periods, and the facial hair or hair loss. However, it is about not only the symptoms, but the long-term implications. Fertility is an issue for both conditions, but they also affect relationships, the quality of life and mental health. The effects are wide-ranging.
It is unacceptable that the average diagnosis time for endometriosis is seven to eight years and that 40% of women take 10 or more appointments even to get to the stage of getting tests done and being diagnosed. It is imperative to have a greater focus on women’s health and to address some of those inequalities.
Although hon. Members have rightly said that this is not just about fertility, if it is about fertility for some women, those seven to eight years may be the only chance they have. That is seven to eight years too long. That is why we are embarking on England’s first women’s health strategy, which will set out a new agenda. I can confirm that it will include a section on gynaecological conditions, including endometriosis and polycystic ovary syndrome, and it will look at the research element. In the short time I have, I cannot expand too much, but I will announce more details shortly, because we hope to publish that before the end of the year.
I know that many, many women, men and families will be listening to this debate, and I want to put it on the record that I hear the concerns and issues that are being faced. I have my listening ears on and we will be taking steps to deal with some of the issues. The NICE guidelines on endometriosis are really clear. They list the symptoms that should be picked up and addressed, and that should alert healthcare professionals to the need to refer women, not gaslight them. It is concerning that, despite the NICE guidelines, many women are struggling in the way that they are. For PCOS, the clinical knowledge summary highlights symptoms that should be picked up and that should be flags for referral and care.
I take the point of the hon. Member for Belfast East (Gavin Robinson). We heard from the hon. Member for Arfon (Hywel Williams) that, when there are issues in Wales, women can access services in Liverpool. I am happy to meet the hon. Member for Belfast East to see what options are available for women in Northern Ireland.
In the short time I have, I want to turn to research—the subject of today’s debate. We have a world-class research system, as the vaccine rollout has shown, but we know that women are under-represented generally in research, whether that is older women, women from ethnic minority groups, women of childbearing age or women with disabilities. There is evidence that research is not addressing women’s issues. It is crucial that we have an evidence-based approach to dealing with endometriosis and PCOS because that is how we will ensure that the gold standard of treatment is being followed and that women know what they should expect. That is half the problem: women are in the dark about how they should be treated and their condition managed.
Funding is available. Over the past five years, the National Institute for Health Research has funded £8.52 million of endometriosis research. There is a £2 million trial on peritoneal endometriosis, looking at surgery versus non-surgical interventions to manage chronic pain. There is a study of endometriosis in primary care and the experience of both GPs and patients to see what is going wrong at the diagnosis stage. A practical toolkit has been put together to help patients and clinicians. We are also funding a study interviewing up to 80 women about what it is like to have a urogynaecological condition and the experiences they go through. There is £6.65 million of research into PCOS, including a £2 million randomised control trial looking at fertility options for women whose eggs are not being released from their ovaries.
Research is happening. My plea to researchers is that funding is not the barrier. There is a really robust system whereby research is presented, whether from clinicians, researchers, charities or other organisations, and judged on its merits in terms of what it is trying to achieve. The funding envelope is not the barrier. I encourage those who want to do research to come forward. If that is not happening, I am very happy to work with the APPG to find out where the gaps are and, if the research is not being accepted or funded, where we can do better.
The Minister has not yet covered the serious point I made earlier about the backlog in gynaecology. Some 80% of women who are confirmed or suspected to have endometriosis have had their NHS appointments postponed or cancelled because of the pandemic. In my remarks, I quoted somebody who will now have to wait 18 months to two years for her surgery. That is not acceptable.
I absolutely take the hon. Lady’s point. In the spending review, money for elective procedures was allocated to clear some of that backlog. People are waiting a long time, and every effort will be made to clear the backlog as soon as possible.
I reassure colleagues that we want to ensure not just that there is an evidence-based pathway for both endometriosis and PCOS in the NICE guidelines, but that it is followed in clinical settings, so that women know what to expect; in clinical education, to improve both undergraduate and postgraduate training, so that clinicians have the knowledge that they need on both conditions; and in primary care, to ensure good robust knowledge among GPs about both conditions, which are not just about bad periods or abdominal pain, and about the referral pathways that should be followed. On school education, it is so important that young women know what is and is not acceptable in relation to both conditions, so that they are pushing GPs rather than waiting seven to eight years for diagnosis or 10 to 12 appointments for an answer.
Research can make a real difference in a number of areas. Before I hand back to the hon. Member for Coventry North West, I reassure colleagues that funding is available. I urge all researchers who want to conduct research in this area to submit applications and bids, because there is no way that we will deal with many of the issues that have been raised today without them.
I thank all hon. Members who have spoken so passionately in this important debate. I look forward to hearing from the Government about their strategy to make funding for endometriosis and PCOS more readily available, and about how their strategy to improve research on women’s health will establish well-supported and dedicated funding bodies for both endometriosis and PCOS research.
I will highlight some of the many important remarks made during the debate. My hon. Friend the Member for Kingston upon Hull West and Hessle (Emma Hardy) underlined the fact that we do not know what causes endometriosis and that we need dedicated funding to determine the cause of the condition. I completely agree with the hon. Member for Thurrock (Jackie Doyle-Price) on the crucial point about the need to destigmatise and demystify many of the symptoms associated with endometriosis and PCOS.
Finally, I thank my hon. Friends the Members for Streatham (Bell Ribeiro-Addy) and for Worsley and Eccles South (Barbara Keeley), as well as the hon. Member for East Renfrewshire (Kirsten Oswald), for their powerful stories, which illustrated better than statistics or figures ever could the need to support women who suffer from these conditions. Simply put, we need more funding for research into endometriosis and PCOS so that we can combat both. I thank every Member who participated in the debate.
Although I am sure that Mr Norris was correct in saying that Sir David would have been pleased with the terms of the debate, as the Minister said, I am sure that Sir David would also have been holding her feet to the fire afterwards.
Question put and agreed to.
That this House has considered e-petition 328570, relating to research into endometriosis and polycystic ovary syndrome.