Endometriosis Education in Schools

Alec Shelbrooke Excerpts

Tuesday 21st May 2024 Westminster Hall

[Sir Alec Shelbrooke (Elmet and Rothwell) (Con)]

I beg to move,

That this House has considered endometriosis education in schools.

It is a pleasure to serve under your chairmanship, Ms Vaz. I have been trying to raise awareness of endometriosis for several years now. I am proud of the work done by not just me but other colleagues across the House, not least our late, great friend Sir David Amess, on raising the issue of endometriosis—something that, surprisingly, so many people, men and women, still do not know about. In various debates, especially those about endometriosis in the workplace, we have started to raise the profile of the disease, and more and more people are speaking about it. But it is surprising how few people recognise the condition. An e-petition that closed in March 2023, “Include PCOS & Endometriosis education in the national secondary curriculum”, gained only 3,105 signatures. Yet the people who deal with endometriosis know that thousands—in fact, millions—of women are affected by the disease.

Today, I seek to address the issue by asking my right hon. Friend the Minister to prescribe the teaching of endometriosis in the national curriculum, hopefully for this September. I will start by re-highlighting the disease and its impact, because that is important. I will highlight some issues from a 2019 report by Keisha Meek of Northern Endometriosis Sisters Support, because she summarises things well:

“Endometriosis comes with many symptoms, these symptoms do not just occur at the time of a woman’s period.”

The most common symptoms are abdominal cramps, back pain, severe menstrual cramps, abnormal and heavy bleeding, painful bowel movements, pain urinating, painful sex, difficulty becoming pregnant, nausea and sickness. The impact that can have on women’s lives and relationships is enormous. The report says of relationships:

“Long term conditions can have a significant impacts on relationships between family, friends and partners. This can be due to various different reasons such as not understanding, lack of information, taboo around the illness, not publically understood or spoken about. Women who suffer with endometriosis are regular called liars, told it is ‘just a bad period’ and called dramatic. It is known in other long term illnesses that people also…struggle to understand.”

That first paragraph emphasises why I have brought this debate today. The report goes on:

“We have found many women within the endometriosis community have lost friends, this is due to them having to cancel plans due to severe pain and bleeding. Sometimes they have been bed bound, even when they have explained to their friends why they can be left out, not invited or treated like liars. It can be a very isolating experience for women or anyone living with a chronic illness.

As well as friendships we have found women have had issues with their families, resulting in family members no longer speaking to them or inviting them to events. Even after trying to educate their families, the taboo around endometriosis makes this difficult and lack of understanding/knowledge. This is also an issue within other long term condition communities.

We have many women with endometriosis who stay single to protect themselves due to issues in previous relationships. There are women whose partners have left them due to endometriosis, this can be due to sex, the woman’s psychical health and mental health, infertility and many other issues that endometriosis can cause. Women have unfortunately been victims of domestic abuse, their partners excuse being endometriosis or rape due to them saying they can’t have sex due to pain.”

Then, there are the issues at work:

“Many women work with endometriosis, however this can be a struggle and there is lack of understanding for endometriosis sufferers as this is not well known. They are also not protected under the disability act.”

The hon. Member for Kingston upon Hull West and Hessle (Emma Hardy) and I recently met some campaigners, along with the Disability Minister, my hon. Friend the Member for Mid Sussex (Mims Davies), and we are trying to move that forward in a separate piece of work. This issue must be addressed through the work of a wide range of Departments.

Endometriosis results in people having to take a long time off work. In most cases, women find themselves on sickness plans that they are unable to adhere to, which can result in the termination of their employment. A lot of women find themselves moving around jobs trying to survive and pay bills. Due to sickness, many women have felt discriminated against. That is at the heart of why I want the disease to be part of the curriculum. This debate is not just about women who suffer from endometriosis; it is about society as a whole understanding this disease.

I give credit to Essex Police: shortly after my debate on endometriosis in the workplace, it contacted me to ask whether there was more that it could be doing. There are employers out there who are proactively moving ahead, but one reason why this should be on the curriculum is that it is important that everybody is taught about this disease.

[Emma Hardy (Kingston upon Hull West and Hessle) (Lab)]

I pay tribute to the work that the right hon. Gentleman has been doing on this issue. I am slightly concerned about the latest sex and relationship guidance that the Government have published, because it removes a previous reference to menstruation on the curriculum in primary schools, with this “Not before year 4”.

Obviously, the average age for girls to start their periods is 12. However, data shows that some girls start aged eight and younger, so removing that reference means that some girls could be starting their periods before actually receiving any education on what periods are. The same guidance also removes the reference to males having the education at primary school. Surely the Government think that it is important for girls and boys to understand all about periods. Again, I pay tribute to the right hon. Gentleman’s work in securing this debate.

[Sir Alec Shelbrooke]

I am most grateful to the hon. Lady—my hon. Friend; we have done a great amount of work on this together. This is truly a cross-party effort, also involving the hon. Member for Strangford (Jim Shannon); I know the hon. Member for Livingston (Hannah Bardell) would want a mention of the work she has done.

The hon. Member for Kingston upon Hull West and Hessle is right, and I am going to touch on some of that later on; I have also had representations from people to touch on that issue. The hon. Lady mentioned the reason why I am glad we are having this debate: it is highly relevant, based on the statement made last Thursday. I am glad that the Minister has been able to find time to respond to this debate, because it is absolutely right that we try to use this moment to highlight the point.

People with endometriosis also have a higher risk of the following diseases. That is important because we educate about those diseases, but we are not educating about endometriosis. Compared with the general public, sufferers have: a 37% higher chance of developing ovarian cancer; a 38% higher chance of developing endocrine tumours; a 26% higher chance of developing kidney cancer; a 33% higher chance of developing thyroid cancer; a 37% higher chance of developing brain tumours; a 23% higher chance of developing malignant melanoma; and a 62% higher chance of having a heart attack, and that is a direct result of blood loss and anaemia.

Another account I have is from a lady who contacted me after I went to the premiere of “Below the Belt” in 2022, which I recommend to anybody who has an interest in this subject. I am going to read her description because it paints the picture of why this is so important.

“I am a stage 4 endometriosis sufferer, in which it took over 15 years to be diagnosed, in which time my story, in brief, was:

Every month since I started my period I would spend the first day sat in the toilet holding my bin. So that I could be sick and completely empty my bowels. I would then 9/10 pass out in the bathroom or on the hall trying to get to my bedroom. If I wasn’t lucky enough to be out cold, I would have to take enough painkillers to knock me out. I would then spend two days in bed having hot sweats in a cycle of being in pain, throwing up and sleeping. When I hit 30 I started to have mid cycle pains and neurological symptoms and extreme fatigue, in which I struggled to stay awake, and I would have to take daily naps. I started to have blood in my poo, and bloated stomach, I was having upper quadrant pain, and getting these weird red dots on my skin, suffering with night sweats and random fast heart palpitations. I thought I was going to die.

From the age of 13 being called a liar, being shoved pain killers and anti depressants, being told that it is just a period and to get over it by GPs…several referrals to gynaecology from the age of 17. Being told I have a low pain tolerance and to just have a baby as that will sort everything out. Also reassuring me that nothing was wrong at all with my fertility (how wrong they were)…Being misdiagnosed with anxiety, depression, IBS, piles, querying bowel cancer and Crohn’s…Being told I had a tiny cyst on my ovary that meant nothing, and that I have dramatised and medicalised the situation as I know it is there.

Suffering early-stages miscarriages/chemical pregnancies…Handing my notice into a job I loved due to the lack of support and workplace ‘banter’ over me being sensitive…Passing out at work, being called lazy at work for having to sit down, getting into trouble for spending too long in the toilets/disappearing…Waking up in the uni toilets five hours later by myself, after passing out in pain. I had to pay over £100 to get a cab back from Eastbourne to London. A cab driver had to deal with my endometriosis flare-up on a motorway until I passed out in pain. When he got me home, I woke up to random people around me, as he started to bang on all the doors to get help/get to someone that I know.

I have lost friends due to ‘letting them down’, being ‘sick’ for no reason at all…Once I paid privately (over £5,000) to find out what was wrong with me and get me help, in which I was told I could lose my bowel, my womb and bowel are twisted, and my organs had been shoved to the left-hand side of my body. I then had a fight with my GP to get access to the help I needed. In which I was sent as a routine patient to a general gynaecologist who told me to have a baby and go on the pill. It then took me weeks to be asked to be sent to Guy’s endometriosis clinic, in which I was given an urgent appointment after I sent them through my scans. They then gave me an urgent MRI and told me that they believe that it is worse than expected and I would lose my tubes and ovary, and require a stoma. Although I would have to wait over two years for surgery and to go to pain management to help medicate the pain (this is a nine to 12 months wait list).

I paid over £15,000 for private robotic surgery to completely remove all the endo. Best choice of my life, I have my life back…I now have mild pain during my periods, which I can manage with exercise or occasional paracetamol…My periods do not rule my life…I have my life back.”

The reason I wanted to give those examples is that they describe the trauma of this disease. As many as 10% of women in this country have this disease. I have a report from a lady called Nel at Hey Endo!; I think the hon. Member for Kingston upon Hull West and Hessle knows her quite well. I am exceptionally grateful for the information she sent me about what they are doing in schools. The statistics are quite shocking.

When asked, “Have you heard of endometriosis?”, 54% said no. “Have you heard of adenomyosis?”; 98% said no. “Have you heard of PCOS?”; 57% said no. “Do you talk to your family about period health?”; 52% said no. “Do you talk to your friends about period health?”; 60% said yes and 38% said no. “Do you feel like you can approach your education setting about period health?”; 54% said no. “Did you learn about periods in school?”; 16% said no and 82% said yes. That is important, because we are educating them about periods but not about the diseases. “Did you learn about endometriosis in school?”; 88% said no. Before the presentation, only 30 students could state a fact that they knew about endometriosis.

[Emma Hardy]

The right hon. Gentleman is absolutely right. As he has pointed out, the figure is 10%. That means that in every classroom, three or four girls potentially have endometriosis, and yet the subject is still not covered. I strongly suggest that we look at covering it specifically, as mentioned, and as early as possible, because this has an impact on girls taking exams. It is exam season right now, when they are in the middle of their GCSEs. Some girls will be sitting their GCSEs now, suffering from endometriosis. It should stop being a taboo subject; it happens to lots of us. Let us make it more publicly known.

[Sir Alec Shelbrooke]

On the hon. Lady’s point, I am rather concerned about reports in the press about schools not allowing girls to use the toilets, saying that they have period passes and that they should plan around it. All those policies are set up around normal periods. That goes to show that there is a distinct lack of understanding throughout, not just in the curriculum but throughout the school’s policies. That is why it is vital to move this issue forward quickly.

I did some research, which I am sure the Minister is well aware of, about what happens at each key stage, and how physical health education is taught. At key stages 4 to 5, lessons on fertility and pregnancy choices include how an individual’s fertility changes over a lifetime, and where to seek medical help and emotional support. Key stages 3 to 5 include “The Truth, Undressed” lessons, in collaboration with Canesten—a set of four lessons promoting understanding of vulval and vaginal health. Key stages 3 to 4 include lessons on breast cancer, in collaboration with breast cancer charity CoppaFeel!, to encourage young people to get to know their bodies and adopt healthy behaviours from a young age. This lesson includes essential knowledge about breast cancer, information on healthy lifestyle choices that may reduce a person’s risk of getting cancer, guidance to help them get to know their bodies, and guidance on what to do if they find something that is not normal for them. Key stages 3 to 5 include lessons on testicular health, with information on testicular torsion, orchidectomy and testicular cancer.

I am sure everyone here agrees that that is highly important education, and that cancer is a terrible disease. That is the word: it is a disease. Endometriosis is a disease, and it should be getting exactly the same treatment in the curriculum as other diseases. I noted the Secretary of State’s comments about a range of diseases that are being looked at with a view to bringing them into the curriculum, but I am specifically talking about endometriosis today to push the issue forward.

As I have pointed out, it is vital that we teach this to boys and girls, as the information can be important to them later as adults when, for example, they might be bosses running a company or business. I genuinely do not believe that people are of bad mind. I do not believe that people want to be evil to people or to bully them. It always comes down to a lack of education and knowledge, and not understanding situations. Maybe I am a naive politician, but I do believe in the good in people. I do not believe that people want to treat others badly, but they just do not know anything about this, and that comes down to education and the curriculum.

I have received a note, drawing on what the hon. Member for Kingston upon Hull West and Hessle has said, from Endometriosis UK, which asks whether I could raise these points in this debate directly with the Minister. The Government proposal is to remove a previous reference to covering menstruation in the curriculum in primary schools before the onset of puberty, and to introduce a not-before-year-4 age limit on when pupils learn about menstruation. Endometriosis UK is concerned that the proposed new age restrictions may prevent some children learning about periods before they start having periods, and it seeks further consideration of this matter.

The Government propose the introduction of a specific reference to children being taught the more appropriate language of “periods and menstrual products”, rather than “sanitary items” or “hygiene products”. Endometriosis UK fully supports that. Outdated language and a focus on “hygiene” and “sanitary products” feeds a myth that menstruation is dirty and unhygienic, rather than a natural and normal process.

The Government propose the removal of a previous reference to male pupils when learning about menstruation in primary school. Endometriosis UK would like to see all pupils, including male pupils, learn about menstruation in primary school.

The Government propose the introduction of a new requirement to cover gynaecological health for pupils and secondary schools, including what an average period is, period problems such as premenstrual syndrome, heavy menstrual bleeding, endometriosis, polycystic ovary syndrome—PCOS—and when to seek help from healthcare professionals. Endometriosis UK is extremely supportive. Endometriosis being on the curriculum for all pupils in secondary school would be a major step forward. Endometriosis UK is delighted to see plans for specific content focusing on when to seek help from healthcare professionals, which will help to drive down diagnosis times for endometriosis.

Finally, the Government propose the introduction of a new requirement to cover reproductive health, fertility and menopause to pupils in secondary schools. Endometriosis UK supports that.

To conclude, I have some questions to ask the Minister. This disease affects 10% of women. That is millions of women. Symptoms can be anything from mild to horrific. Tragically, dozens of women every year take their life over this disease because they cannot cope any longer with the pain.

It is a very difficult disease to solve, but knowledge of what the disease is at the start, may provide a head start in improving the eight to 10 years’ waiting time for a diagnosis. I believe that that is because people just do not know enough about it. I gave the example of that poor woman who experienced pain from the start of her periods. My hon. Friend the Member for Kingston upon Hull West and Hessle spoke about menstruation now starting in nine-year-olds. One of the questions I have for the Minister is what work he will be doing with health professionals to consider when we should be putting endometriosis education into the curriculum. I believe it is important that girls know about the potential problems that could affect them before they start menstruation—maybe boys can be taught later. I seek the Minister’s guidance, and maybe he will need to take the question away, on what work he will do to find out when we can put that in the curriculum. There is obviously a lot of science about what the average age is to start menstruation. We heard the example of the woman who from the moment her periods started was in pain. Girls need to understand what it is.

I really want to push for endometriosis to be in the curriculum on sex education in the way that breast cancer is included in personal health education. Endometriosis is another terrible disease, and it does result in death. There is no getting round that. Everybody needs to understand the disease, which is where education becomes the responsibility of the Government. I will finish with this: if someone does not know a disease exists, how do they know they have got a disease?

--- Later in debate ---

[Sir Alec Shelbrooke]

It would be remiss of me not to mention the fact that endometriosis continues for many people after the menopause. It is not a disease just for women who menstruate; it can continue after the menopause, and it can start before menstruation. As the hon. Lady points out, this disease is not restricted to gynaecology.

[Catherine McKinnell]

The right hon. Gentleman once again demonstrates how incredibly knowledgeable he is about this issue, and how much that knowledge is lacking among the wider public and in this place. We are grateful to him.

It is so essential that young people are taught about their bodies in school, and that they learn about not just relationships and sex, but health and wellbeing. That must include what is and is not normal throughout puberty, the menstrual cycle and hormones, to set young girls and young people up to live healthy lives, both mentally and physically.

--- Later in debate ---

[The Minister for Schools (Damian Hinds)]

May I say what a pleasure it is to see you in the Chair, Ms Vaz? I think this is the first time I have spoken under your chairship. I join others in congratulating my right hon. Friend the Member for Elmet and Rothwell (Sir Alec Shelbrooke) on securing this important debate. I also thank everybody who has taken part, including the hon. Members for Kingston upon Hull West and Hessle (Emma Hardy) and for Strangford (Jim Shannon), my right hon. Friend the Member for Romsey and Southampton North (Caroline Nokes), and the hon. Member for Newcastle upon Tyne North (Catherine McKinnell), who spoke for the Opposition.

There is clearly strong cross-party support and drive to improve understanding of women’s health issues and ensure that young people are able to both navigate any issues they may face and, crucially, understand and support others. This has been an important follow-up to the debate that my right hon. Friend the Member for Elmet and Rothwell led in this Chamber in 2022 on the importance of raising awareness of endometriosis and the support needed in the workplace, including to tackle the many everyday challenges it can bring for employers and staff, which he outlined so powerfully.

I have seen at first hand the excellent work that my right hon. Friend has been doing to improve information and education on endometriosis more generally. I applaud his dedication to keeping the issue in the spotlight. He made a prominent remark during the previous debate:

“It would take 20 days, at 24 hours a day, to name every woman in this country who suffers from endometriosis.”—[Official Report, 9 February 2022; Vol. 708, c. 394WH.]

That really brings home the scale of what we are talking about, as he said again.

Colleagues in the Department of Health and Social Care are particularly engaged in these issues. The Government have made women’s health a top priority, and we are driving forward a women’s health strategy that is delivering a better standard of care for women and girls. Care for menstrual problems, including endometriosis, is one of the Government’s top delivery priorities for this year. We are investing £25 million to establish women’s health hubs, which will improve access to services for menstrual problems including endometriosis, contraception, menopause and more. Women’s health hubs will also take pressure off secondary care waiting lists.

Ensuring that women and girls have access to high-quality, trusted information is a top priority, too. We have created a women’s health area on the NHS website, which brings together over 100 pages of information, including on periods and endometriosis, and we have launched a video series on endometriosis on the NHS YouTube channel. In April, we ran a campaign in national media titles, supported by the women’s health ambassador for England, encouraging women not to suffer in silence if their periods or menopause symptoms affect their daily lives. That included a specific focus on endometriosis symptoms, and we are planning further campaigns across the year.

Sadly, we are all aware of the taboos and stigma that surround many areas of women’s health, with girls and women not feeling able to talk about issues such as periods. Too many girls and women are made to feel that very painful or heavy periods are normal and something they just have to get used to, rather than told about how they can seek help for those symptoms and understand what is happening to their bodies. Education can and does play an important role in complementing the women’s health strategy, and that of course includes education in schools. Ensuring that there is an early understanding of women’s health issues, including endometriosis, among boys as well as girls—I will come back to that point—can help in removing remaining stigmas and taboos.

My right hon. Friend the Member for Elmet and Rothwell will be aware that last week we published for consultation updated draft statutory guidance for relationships, sex and health education. That is part of the Government’s plan to deliver a brighter future for Britain in which our young people are supported and given the right education at the right time, so they are safe, happy, healthy and equipped with the information they need to succeed.

The revised RSHE curriculum includes strong health education, which focuses on the core knowledge that children and young people need to thrive as they progress into the wider world. To get the RSHE guidance right, we have worked with stakeholders in the sector, faith groups, teachers, academics and young people themselves. We have also worked with colleagues across Government to ensure that the content is accurate and up to date, that the content of lessons is factual and appropriate, and that children have the capacity to fully understand everything they are being taught, including about puberty and menstrual and gynaecological health.

I am pleased to say that that has led us to make significant additions to teaching in this area, including improvements to teaching about health and, in particular, menstrual health. That is in addition to what is already in the national curriculum, in which the menstrual cycle is taught to pupils between 11 and 14 years of age as part of the key stage 3 science curriculum.

The updated draft RSHE guidance states that primary school pupils should be taught the key facts about the menstrual cycle, including physical and emotional changes, from year 4. The secondary curriculum includes more on menstrual and gynaecological health, now specifically including endometriosis, polycystic ovary syndrome, or PCOS, and heavy menstrual bleeding. Those areas are now specifically set out in the “Developing bodies” section of the guidance.

[Sir Alec Shelbrooke]

I am most grateful to my right hon. Friend the Minister for his response; he is outlining a very clear path to improvement. Will the education about endometriosis, polycystic ovary syndrome and so on in key stage 3 take place at the very start of year 7? I am concerned about taking it out of key stage 2, given that girls will have started their menstrual cycles; in the example I gave, the lady said that she was in pain from her very first period. I accept that he might not be able to respond right now, but can I push him on when the Department thinks it will be appropriate? Does it think it appropriate for girls who are getting ready to start their periods, or for girls who have started their periods?

[Damian Hinds]

That was a very important and clear question from my right hon. Friend, and I will note two important things in response. First, the guidance is a framework; it is not a week-by-week series of lessons. Earlier, he read out some examples of things that were closer to lesson plans and a sequenced curriculum, which is a further level of detail. The guidance sets out a framework, and then teaching materials are developed. He mentioned a couple of the third parties that are involved in that. We do not specify to schools which third-party material or self-created material they should use. We do not get into such a level of detail that we say, “From the first half-term in year 7, this is what should happen,” but we do not stop it happening either.

The second thing to note is that threaded throughout the RHSE guidance and, indeed, more broadly, is the flexibility for schools to respond to their own circumstances and their children, who they know better than anybody sitting in Whitehall ever could. The general point is that learning about menstruation from year 4 does not mean that teachers are unable to talk about it before year 4 if that is the appropriate thing to do because girls in the class are already at that stage. I hope that that helps to give a little more clarity, but, as ever, I would be happy to follow up with my right hon. Friend the Member for Elmet and Rothwell separately, if he would like. The revised draft guidance sets out that curriculum content on puberty and menstruation should be complemented by sensitive arrangements to help girls prepare for and manage menstruation, including with requests for period products. In response to my right hon. Friend’s earlier point, schools should use appropriate language, such as period pads and menstrual products. The guidance also sets out how and when to seek support, including which adults they can speak to in school if they are worried about their health.

Rightly, the revised guidance supports young people to understand their changing bodies and feelings, how to protect their own health and wellbeing, and when a physical or mental health issue requires attention. We have introduced minimum ages in certain areas to ensure that children are not being taught sensitive or complex subjects before they are fully ready to understand them. But, as I was saying—this comes to the point made by the hon. Member for Kingston upon Hull West and Hessle—when girls start menstruating earlier than year 4, schools have the flexibility to cover that.

The relationships, sex and health education guidance is statutory and part of the basic school curriculum, so schools must have regard to the guidance and can only deviate from it with good reason. I want to take this moment to be totally clear that we do not mean that the subjects should be taught only to girls or should not be taught to boys. It is true that in the previous edition of the guidance, that was there in the rubric. It not being there does not mean that that is no longer the case; it should be taken as read that this is for all pupils.

As the hon. Member for Strangford and others said, it is true that there has sometimes been a tendency—perhaps in generations past, sometimes in generations present—to use phrases such as “women’s problems” and to generalise things as if it is not important that everyone can understand and distinguish between them. That is what we need to move beyond. As I said earlier, relationships, sex and health education is not only about understanding what is happening to our bodies; it is also about understanding the people around us and what we may come into contact with in future.

In an analogous sense, I was pleased that in the 2019 edition of the guidance we included the menopause for the first time, which generations of boys in particular, but also of girls at that age, did not know about. It was not about saying that that was about to happen to them, but of course in our wider lives—remember that this is relationships education as well as sex and health education—it is important that we are all educated on these things.

[Sir Alec Shelbrooke]

I am grateful for the Minister’s response, but—there is always a but—will he specify whether endometriosis will be taught in schools? I cannot dig out whether he said that it will definitely be taught in schools, so I want clarification on that.

[Damian Hinds]

I did. Specifically, in key stage 3, in lower secondary school, yes, it should be part of the curriculum at that stage.

--- Later in debate ---

[Sir Alec Shelbrooke]

Clearly, today’s debate has shown that this subject is cross-party. There are no politics in this; it is highly important for young people’s health and the consequences that that will have through their lifetime. I am grateful for the Minister’s response and I am glad to see the curriculum is moving forward. However, he can rest assured that I will still be at his door, nagging to make sure we get exactly what we need to give young people and people the support and education they need throughout their lives.

Question put and agreed to.

Resolved,

That this House has considered endometriosis education in schools.