Endometriosis Education in Schools

Debate between Alec Shelbrooke and Emma Hardy

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?

Independent Medicines and Medical Devices Safety Review

Debate between Alec Shelbrooke and Emma Hardy

Thursday 8th July 2021 Commons Chamber

[Emma Hardy]

I thank the hon. Lady for her intervention and I agree with her absolutely, which brings me on to the point about the redress agency, which is one of the recommendations in the report that has been rejected. Instead, the Government have said:

“The government and industry have previously established redress schemes without the need for an additional agency.”

That goes to the point that she made, because this puts the burden of redress in entirely the wrong place: on the victims, not on those responsible. Seeking redress requires enormous effort on the part of those who are already suffering, not just financially but emotionally, as was set out in Baroness Cumberlege’s report. It recommends that without waiting for the establishment of a redress agency:

“Separate schemes should be set up for each intervention…to meet the cost of providing additional care and support to those who have experienced avoidable harm”.

Sadly, no such moves have been made, so I would be interested if the Minister gave an indication of the progress on such schemes.

The report also recommends transparency on payments to clinicians, with a UK-style Physician Payments Sunshine Act 2010 to require the mandatory reporting of all payments made to doctors, teaching hospitals, research institutions and charities. The Government’s interim response said that they would “consider” this recommendation, in discussion with other parties, including the General Medical Council. I understand that there are suggestions that this could be done by expanding the voluntary system of reporting, but, as we have seen, voluntary systems simply do not work.

By way of a quick example, a high-profile academic recently admitted that he had failed to declare £100,000 from the manufacturer of one of the types of vaginal mesh implants that he was assessing. He has now published a correction, but this is almost seven years after he first did his report and it came only after a complaint was made about him. A section 60 order in the Health and Care Bill would allow for legislation to cover this, because transparency is vital to patient safety. There should be no opportunities for payments made by industry to introduce bias into prescribing or the scientific literature that is used to inform our National Institute for Health and Care Excellence guidelines. This report recommended creating a database to record which device was used when, in which person, and what the outcomes were in terms of safety and patient feedback.

The roll-out of the medical device information system has begun, but questions are arising as to what data is being collected. This is really important. To give an indication of that, let me raise the case of Kath, an extremely fit and healthy woman who used to be interested in skydiving. She had mesh implants and afterwards was in such pain that she was unable to move or get out of bad. This completely changed her life forever. However, her procedure was recorded as a success because she no longer had incontinence and that was the measure being looked at. We need to be looking at all patient outcomes when we are recording that data in those data sets.

That brings me on to my next point, which relates to the current moratorium on using mesh, as recommended in the report. Kath has said that there is no way she would ever have had this procedure had she had any indication of the risk of harm. I understand that there is pressure from some of the surgeons to reintroduce mesh, but I do not believe we can do that without fully informed consent, and we can have that only if patients are fully aware of all the risks. They can be fully aware of all the risks only if all the data is collected and recorded accurately. Until that is done, we cannot have informed consent and we should not consider lifting the moratorium on the use of mesh implants.

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

I am grateful to the hon. Lady for joining me to help to secure this debate. I will be speaking later, but I wanted to touch on this specific point about the pressure we are coming under. Does she agree that nothing has changed from a clinical point of view in the past 18 months, yet the clinician pressure is to stop the suspension? Does that not represent the pressure we are under coming from the clinician side of this argument?

[Emma Hardy]

I completely agree and thank the right hon. Gentleman for bringing this debate forward and championing it from the other side of the House. He correctly says that we need to have all that evidence so that people can give that informed consent.

Finally, the report recommends establishing specialist treatment centres

“to provide comprehensive treatment, care and advice”.

Some of these care centres are being established, which is good news, but again there are concerns about the data collection on patient outcomes after mesh removal and not all women are having all their mesh removed—some of this is only a partial removal. Again, what questions are being asked and what data is being collected? I have submitted numerous written parliamentary questions to the Department but have yet to receive a clear answer on exactly what data will be collected.

There are also important questions to be answered on the competence of surgeons to undertake removals. I know that my hon. Friend the Member for Washington and Sunderland West (Mrs Hodgson) has a very difficult story on this issue. The Department says that it is for individual trusts to decide which surgeons to use for removals, but I do not share that view. How can it be fair to ask a woman to return to the same surgeon who put the mesh in, causing her all that harm, in order to have it removed? I really think we need to look at this issue again.