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Endometriosis Workplace Support

– in Westminster Hall at 11:28 am on 29th October 2019.

Alert me about debates like this

[Mark Pritchard in the Chair]

Photo of Alec Shelbrooke Alec Shelbrooke Conservative, Elmet and Rothwell 2:30 pm, 29th October 2019

I beg to move,

That this House
has considered endometriosis workplace support.

It is a pleasure to serve under your chairmanship, Mr Pritchard. This issue affects not just the Minister’s Department, but the Department of Health and Social Care, the Department of Business, Energy and Industrial Strategy, the Department for Education and the Department for Work and Pensions.

I thank Dr Larisa Corda, who is an obstetrician, gynaecologist and fertility expert—she is in the Public Gallery—the many hundreds of women who have contacted me, and the very brave women who have made the journey to London today to support this debate. I will not reveal the names of the people who have written to me even if they are happy for me to do so, because I want to maintain their confidentiality and ensure that it remains their choice. In opening the debate, I will cover the following areas: the disease itself; the poor diagnosis and medical expertise in dealing with this debilitating condition; its impact on women’s lives; its impact on workplace activity; and the protections that many women feel are not honoured, despite strong workplace health assessment laws.

The disease is often described as cells from the womb growing in other places, but that is a gross underestimation. I believe that that simplistic description is among the reasons why women find it hard to get employers to understand the terrible condition that they are suffering from. According to Dr Corda, since the start of this year more than 100 women have taken their lives as a direct result of this disease.

Endometriosis comes with many symptoms, which occur not just at the time of a woman’s period. The most common are abdominal cramps, back pain, severe menstrual cramps, abnormal or heavy bleeding, painful bowel movements, pain urinating, painful sex, difficulty becoming pregnant, and nausea or sickness. According to endometriosis.org, people with endometriosis are more at risk of several diseases. The risk of ovarian cancer is 37% higher than for the general public; the risk of endocrine tumours is 38% higher than for the general public; the risk of kidney cancer is 26% higher than for the general public; the risk of thyroid cancer is 33% higher than for the general public; the risk of brain tumours is 27% higher than for the general public; the risk of malignant melanoma is 23% higher than for the general public; and, according to cardiosmart.org, a heart attack is 62% more likely. That series of statistics does not describe the impact of the symptoms; I will give some real-life examples later, but the stark truth is that 30% to 50% of women become infertile from the disease.

Photo of Tracey Crouch Tracey Crouch Conservative, Chatham and Aylesford

I congratulate my right hon. Friend on securing this incredibly important debate. I am sure millions of women around the country will be enormously grateful that he is raising this issue at the highest level. Does he agree that one of the challenges that many people face is that there is a significant lack of understanding of the condition? That leads to all sorts of things, including dreadful delays in diagnosis and a lack of understanding in workplaces of what the chronic pain really means to those women.

Photo of Alec Shelbrooke Alec Shelbrooke Conservative, Elmet and Rothwell

My hon. Friend summarises the biggest issues that those women face. I will talk about the real-life experiences of the women who have contacted me, but one of the most important things—I hope other Members will expand on this—is that there are support networks out there, because women often suffer in silence. As I said, this subject goes beyond the DWP: certainly, the Department for Education and the Department of Health and Social Care have a role to play.

In June 2015, the BBC carried out a study on 15,000 women in Scotland. It found that women with the condition had a 76% chance of miscarriage, which is unbelievably high. The article reported that women with endometriosis had a trebled risk of ectopic pregnancy. The chance of premature birth was 26% and the chance of having a caesarean was 40%.

Later, I will talk about the impact on women of abnormal and heavy bleeding and bowel movement impacts, which can be distressing in the workplace. I am aware that the issue I am about to talk about falls under the authority of the Department of Health and Social Care, but it is vital to add context and explain why this disease has a knock-on effect in the workplace. I ask the Minister to ensure that this debate is fed into the relevant Ministers in the Department of Health and Social Care.

The House of Commons digital engagement team put out a survey only last Thursday, and there have been 2,610 responses, 1,083 reactions, comments and shares on Facebook, and 215 retweets. I want to cite some of the quotes from it. Again, I will not put the names out there; I will just set out the reports.

“At 18 I am currently being put through medically induced menopause to try and fight back against my endo, it’s horrific, it’s debilitating and it’s exhausting. The pain I have I cannot even describe, and two operations later I am no further to being pain free or living a normal life. My next step is a hysterectomy, I haven’t even had children yet and this is what is being recommended to me. My life has been overtaken by operations, drugs, injections, sickness, anxiety, depression and a whole load of awful nights with no sleep and no rest. I am currently finishing my A Levels and I am absolutely terrified of what life will be like after. My dream is to become a primary school teacher, but I think that dream is unachievable. How will I find an employer who will understand that I often have to lay in bed because as soon as I move I will throw up, or that I have had to have time off work because I’ve got to have my ovaries removed? It’s about time that endometriosis is taken seriously, and people understand that life is so challenging and excruciating, but we carry on, smiling through the pain, simply because we have no alternative.”

Photo of Paula Sherriff Paula Sherriff Shadow Minister (Mental Health and Social Care), Shadow Minister (Mental Health)

I thank the right hon. Gentleman for securing this very important debate. Like the woman whose case he is discussing, I had a chemical menopause at the age of 37, but many women have to go to the GP at least 10 times in order to be referred to a specialist. Does he agree that we should include this issue in statutory sex and relationships education, so that when young girls and women experience gynaecological problems or even heavy periods, which may be a sign of endometriosis, they seek help at the earliest opportunity?

Photo of Alec Shelbrooke Alec Shelbrooke Conservative, Elmet and Rothwell

I am most grateful to the hon. Lady, who speaks with a great deal of personal experience. We have been friends for a long time—since we came to this place. We are two West Yorkshire MPs, despite being on different sides of the aisle. I am grateful to her for making those points. As I said, it is important that the Department for Education and the Department of Health and Social Care take this forward. Other Members may wish to try to secure debates that are responded to by those Departments. I know that my hon. Friend the Minister will certainly feed those issues in.

I apologise for citing a lot of stories, Mr Pritchard, but it is important to set out the context. Another lady said:

“I had stage 4 (severe) endometriosis. I had a 7 year wait for diagnosis. From my referral to the hospital, I had a year and a half wait for surgery. My surgery was lifesaving as my bowel was 50% blocked with a mass of adhesions that had grown through the bowel. I was in constant pain, slept for 3 or 4 hours a day and was unable to care for my son properly, I considered putting him into care. If it wasn’t for him, I would have given up on everything. Despite being told in 2010 I ‘probably had endometriosis’ I was still given pain killers and mefenamic acid for years to manage the pain and symptoms. Throughout this time the endo was worsening, it is progressive. Had I been diagnosed earlier I may not have needed the bowel resection I needed and will have bowel issues for life. I was on the pill for 15 years, which is still considered a ‘treatment’. It is not. The same year I came off it (2010) I was at the GP with SEVERE bowel pain during my period (It was fused to my womb). The pill masked the symptoms, but it was quietly progressing. Please ban the use or presentation of the pill as ‘treatment’.”

Photo of Stephanie Peacock Stephanie Peacock Labour, Barnsley East

I congratulate the right hon. Gentleman on securing this incredibly important debate. One in five women will suffer from this disease, and it has been shown that, as that story shows, it can take up to seven years to convince a doctor. That is completely unacceptable. We have an issue in this country with what has been called the gender pain gap. We need to put more money into research and funding to look at proper cures and support for women when they need it most.

Photo of Alec Shelbrooke Alec Shelbrooke Conservative, Elmet and Rothwell

I entirely agree with those sentiments. As I said, I hope this debate will go beyond the Department for Work and Pensions. I thank the hon. Lady for that contribution; it is spot on.

Endometriosis affects 1.5 million women in the UK. It takes an average of eight years to diagnose and there is not really a cure.

I will share a few examples from women who have spoken out through the digital platform. One said:

“I have suffered with endometriosis since the age of 15 and I was diagnosed aged 22. The worst thing about endometriosis is the lack of awareness. Even some doctors haven’t even heard of it which is very frustrating! I’ve had 4 surgeries to try to alleviate the symptoms. Unfortunately, this hasn’t worked. I want to try to basically create more awareness of endometriosis, especially online, as much as I can.”

Another woman said:

“I was diagnosed with endometriosis in May 2016. I would say 2 years was spent actively pursuing a diagnosis. But the previous 9 years I often went to the doctors, complained of pain and heavy flow and I was told ‘it’s just a bad period, it’s normal’. The hardest part of endometriosis for me would be the mental health side of things, coming to terms with the fact my body has limits and my life probably isn’t going to take the direction I thought it would.”

Someone else said:

“I was 17 when I was diagnosed with endometriosis. I’ve had 6 surgeries since. The thing I hate most about endometriosis is not being able to plan ahead because you don’t know how your pain is going to be that day. You could be absolutely fine, or you could be crippled.”

A young woman said:

“I was diagnosed with endometriosis on the 14 February last year, I was only 15. It took me 3 years to get diagnosed. For those 3 years, I was told I had unexplainable abdominal pain.”

Another story comes from a woman who said:

“I was diagnosed when I was 25 when I had a miscarriage. I had been struggling since I was a teenager with all the common signs of endometriosis. It just wasn’t picked up until I had my first surgery. What I hate most about endometriosis is that it takes time away from my children. Especially when I have to just go and rest in bed. I would love to be able to make it more aware for children, especially young girls and in schools, to be able to support them through this and see the early signs and educate GPs on the signs and symptoms.”

Photo of Hannah Bardell Hannah Bardell Shadow SNP Spokesperson (Digital, Culture, Media and Sport)

I thank the right. hon Gentleman for giving way and congratulate him on securing this hugely important debate. Does he agree that local groups, such as Endo Warriors in my constituency, which do such important work to educate young people in schools and to ensure that early signs of endometriosis can be picked up by doctors and health professionals, are absolutely vital and have such an important place in our communities and constituencies?

Photo of Alec Shelbrooke Alec Shelbrooke Conservative, Elmet and Rothwell

I am grateful to the hon. Lady, who raises a very important point; there are many support groups out there. I will come to the workplace impact, for which the Minister is responsible, but one of the things that I want this debate to achieve is to highlight to women far and wide that there are lots of support groups in different areas of the country. More importantly, I hope that the debate will be heard by the Department for Education. To strengthen our point, we may have to come back to debate the issue with each separate Department, and we should ensure that we do so.

Another sufferer said to me:

“I have suffered with endometriosis since being 19. I had always had heavy periods and then my symptoms escalated to constant bleeding, pain on intercourse, really bad pain in the lower tummy and lower back. I was backwards and forwards from anywhere between 6 months plus, who constantly checked me for STDs. They’d do swabs, send me on my way and they’d come back clear, and I was in that cycle. I was in work one day when I was given an awareness form for endometriosis. Every symptom listed, I ticked. I’m now 36 and I’ve had 22 laparoscopies. At 29, I had a hysterectomy. When they removed my cervix, they found the endometriosis in there.”

A young woman who has given me a huge amount of help in preparing for this debate told me:

“My journey with endometriosis began when I was 11 years old, when I had my first period. From a young age I was going back and forth to the doctors for leaking through my clothes at school, just after being to the toilet. I have always been active in football and dancing but found myself struggling with the disease due to the pain, lack of energy and continued leaking through my clothes.”

We are talking about an 11-year-old girl. She continued:

“Initially I was told they thought I had endometriosis but was too young for the surgery required for diagnosis. I ended up going through surgery for a womb polyp and ovarian cysts. To date, I have now had 10 surgeries, all with general gynaecologists. Finally, I have been able to see an endometriosis specialist after 10 years of suffering. I had surgery on the 8th of April 2019 which was the diagnostic surgery I had been waiting for. The specialist surgeon found years of missed endometriosis due to untrained surgeons. Unfortunately, a shortage of worldwide endometriosis specialists means this is not uncommon for women suffering.

This disease has had a huge impact on my mental health. Alongside other personal family issues, the daily pain I have been going through has made tackling day to day life harder. Whilst I have had friends and family support me, I have also lost friends because they don’t understand this disease. I have tried to take my life multiple times because of it. The problems have also extended to my fertility. I have had miscarriages and a medically advised abortion. Not only was this a devastating and horrific experience for me but had a dramatic impact on my work life as well as personal.”

Another lady said to me:

“As soon as my periods started when I was just 12 years old, the problems began. I suffered extreme pain and heavy bleeding, to the point where I passed out several times. On speaking to my GP, I was told ‘every girl has this, it’s normal’. The doctor prescribed me oral morphine for the pain, but most of the time it barely touched it. Finally, I was offered a laparoscopy in February 2016. The surgeon told me I had endometriosis, but that they had treated it and I wouldn’t have any further problems. I was so happy and relieved, little did I know the fight was far from over. By October the symptoms had returned. On speaking to my doctor, I was told it couldn’t have come back after surgery, it was part of being a woman and I simply needed to be more positive. Eventually, I got referred to an endometriosis specialist hospital where an MRI scan showed my left ovary and bowel were stuck to my cervix and I had 100% got endometriosis back. This means more surgery.”

I am so grateful to the members of the public who engaged with the digital engagement platform. A woman from Newcastle shared her workplace experience. She said:

“I have been disciplined for being off sick. I am terrified to go off sick again, so I have to force myself to work even when the pain makes me vomit. If I go off sick again, I know they will sack me, this has been made very clear. I work for HMRC and I know this is a massive issue for other members of staff as well.”

Another lady said:

“I have been fired from all my jobs, my last workplace bullied me and mocked my illness, nothing was done via HR and I was made to leave instead. I have never had support from any workplace.”

Photo of Gill Furniss Gill Furniss Shadow Minister (Business, Energy and Industrial Strategy) (Steel, Postal Affairs and Consumer Protection)

I thank the right hon. Gentleman for securing this extremely important debate. As a member of the all-party parliamentary group on endometriosis, which is ably chaired by Sir David Amess, I have been privy to many of these stories. Does the right hon. Gentleman agree that a major barrier to support in the workplace is the taboo around menstrual health? Surely, we have to get people talking about that. One idea may be to encourage employers to become endometriosis-friendly, so that people get support and HR departments understand that it is a real illness and not something that someone should have to endure.

Photo of Alec Shelbrooke Alec Shelbrooke Conservative, Elmet and Rothwell

I am grateful to the hon. Lady for that important point. That goes back to the earlier example of the lady who suffered for so many years and who got a diagnosis only when she had ticked every single box of a workplace survey. That is why we need a debate with the Department for Business, Energy and Industrial Strategy—we need to work across so many areas of government. The hon. Lady is right: any issue of women’s health, but especially menstrual health, is still taboo. Someone asked me why I secured this debate. The primary reason is that I have worked very closely on this with a previous constituent of mine, but I also think it important that a man stands here and says that women’s health is not a taboo subject. We are all human beings and we all have health issues. We should all stick together and help everybody, regardless of how embarrassing we might find the subject. There is nothing embarrassing about health and we need to look after people.

The stories that I have given all share the same underlying theme: “I was told by doctors that it was all part of being a woman.” Given the backdrop of the personal trauma that women with endometriosis suffer—years without a diagnosis, personal relationships breaking down and strain on personal finances—they should at least be able to expect the law to protect them in the workplace, like anyone else who suffers with a disability. The truth, however, is that a whole host of employers are completely unsympathetic to the disease, and often dismiss employees because of a “poor sick record”.

Photo of Daniel Poulter Daniel Poulter Conservative, Central Suffolk and North Ipswich

My right hon. Friend makes a very good case and highlights the challenges faced by many women with endometriosis. He will recognise that many people have other chronic health conditions, such as inflammatory bowel disease, Crohn’s disease, ulcerative colitis or rheumatoid arthritis, which can also be life-limiting in the ways that he has outlined. For clarity, is he saying that endometriosis is a special case, or do the principles that he is outlining actually apply to many other chronic health conditions, the sufferers of which often find that they are also discriminated against at work?

Photo of Alec Shelbrooke Alec Shelbrooke Conservative, Elmet and Rothwell

Of course, all employers should support people in the workplace who have any of the whole host of chronic illnesses that my hon. Friend mentioned, but quite a few of those illnesses get diagnosed relatively easily, or in a shorter time than endometriosis. One of the problems is that there is such a long diagnosis time—I will refer to that later. Gill Furniss made a point about better education in the workplace. I absolutely agree with my hon. Friend Dr Poulter that this is not about singling out one disease—the whole range of workplace diseases must be covered—but it creates many issues when women cannot even get diagnosed, and cannot tell an employer, “This is what is going on.”

I was given a copy of this text message, which a lady received:

“Hey Karen,

I hope you are doing a bit better, i am sorry to hear you have so much going on physically.

We have had to pause your email access due to confidentiality as you are signed off sick. I am aware you may be off for a few months, so we will end your contact at this point as you are off for a prolonged period of time.

Should you wish to reapply when things work out for you please get in touch through the usual route.

I hope this all makes sense for you, and you can take the time you need to recover and get things back to normal.

Many thanks for all your input, and maybe hear from you again in the future.”

That last sentence perfectly encapsulates an utter lack of understanding and support that is far too commonplace.

I quote from an email I received this morning from the Open University, highlighting the work of PhD student Victoria Williams. She has given the following statistics, based on her doctoral research on the workplace:

“In a study of 7,000 women across 52 countries, over 40% had given up or lost their job because of endometriosis…Others are being pushed into part-time roles or becoming self-employed whether the motivation or support is present or not…Women lose an average of 10.8 hours per week due to pain…Women lose an average of £5,757.72 per year due to lost work days…Many suffer in silence in the workplace in a bid to protect their jobs, careers, credibility and reputation. Women live with the daily predicament of disclosing symptoms which may drive accommodations or negatively fuel workplace discrimination…Endometriosis is a condition that is closely connected to menstruation alongside a history of shame, secrecy and lack of knowledge, it is classed as a taboo topic that constrains requesting and/or receiving organisational accommodations and support. Currently there is no advice for working with endometriosis from government bodies, occupational health specialists or the CIPD.”

One woman told me,

“I have had to have extended probations, sickness meetings, ‘what are you going to do to make this better’ and you have to sit there knowing you can’t do anything as there’s no cure.”

Going back to the lady in my previous story, when she had to have the medically advised abortion, a manager said, “Should’ve worn a condom.” The lady said it was hard to describe how disgusted she was, as the manager knew what she was going through.

A catalogue of women starting jobs only to fail the probation period due to sick leave is, I am afraid, an all too common reality. However, it would be remiss of me not to name an employer that women have told me has tried very hard to help sufferers. NPower allowed one severe sufferer to work from home, on flexible working, and was understanding of hospital appointments and surgeries. Let me take this opportunity to highlight an employer that shows that it is not impossible to support women in the workplace with this terrible disease.

My ambition for today’s debate is to raise awareness, especially of support groups, such as the one that Hannah Bardell mentioned, and others such as the Northern Endometriosis Sisters Support and Period Powerful Hub, to mention just two. I want better education in schools for young girls, as we can easily overlook the problem that a young woman with a single-parent father may have in understanding these issues. As I said, I hope that this debate will be recognised by several Departments, but I ask the Minister to ask the Department for Work and Pensions to do a full assessment of how the Department recognises endometriosis as a disability.

For too long, women with this disease have been dismissed as lazy, unreliable, dishonest and a nuisance. It surely must be illegal for a manager who is told of a sufferer’s condition to dismiss it out of hand by saying, “Should’ve worn a condom.” Women have described having to cope with blood seepage through their clothes, but another common factor can be a complete loss of bowel control, and having to dash to the bathroom unexpectedly. To have such an embarrassing and distressing situation used against them, and sometimes to be mocked in the workplace, must surely be illegal. The Equality Act 2010 is a piece of legislation we should all be proud of, but as with all law, it should evolve and change, especially when previously unrecognised situations come to the fore.

I want an assurance from the Minister that he will instruct his Department to do an assessment of how the blatant breaches of law on workplace humiliation, employment protection and, quite frankly, workplace bullying can be addressed, since this silent disease, which often has no physical appearance, can be so easily ignored by employers.

Photo of Daniel Poulter Daniel Poulter Conservative, Central Suffolk and North Ipswich

One of the challenges that the Minister will face when responding to the debate is that while there are medical guidelines from the Royal College of Obstetricians and Gynaecologists, and I think there are some National Institute for Health and Care Excellence guidelines on how to diagnosis support women with endometriosis, those guidelines are not particularly well known among all the medical community. I wonder whether more should be done by the Department of Health and Social Care to improve diagnostic rates. If more women had a confirmed diagnosis, it would strengthen this Minister’s hand in taking action in the workplace.

Photo of Alec Shelbrooke Alec Shelbrooke Conservative, Elmet and Rothwell

I was just about to say that I need the Minister to work with the Department of Health and Social Care, because without a proper medical sign-off, this situation will keep arising, and by the time a diagnosis is finally made, many women have already seen their life destroyed. The Minister will have heard my hon. Friend’s intervention.

I close with some rhetorical questions. Why is a disease that affects 1.5 million women in this country so unrecognised, and so easily dismissed? Why is there not women’s health education in schools, to help young women through their life journey and illnesses they may be suffering from? Why do we have such poor medical diagnosis? How have we been able to go so long without in-depth training for gynaecological surgeons who can help tackle this disease? Fundamentally, and pertinent to this debate, why, despite decades of work on the protection of employee rights in the workplace, do employers try to not only ignore this disease, but shuffle sufferers out of the door?

More than 1.5 million women in this country have been desperately crying out for far too long. Let today be the day that we stop failing so many women in our society.

Several hon. Members:

rose—

Photo of Mark Pritchard Mark Pritchard Conservative, The Wrekin

Order. Due to the interest in this debate, I am afraid I must impose a three-minute time limit on speeches. I call Ivan Lewis.

Photo of Ivan Lewis Ivan Lewis Independent, Bury South 2:58 pm, 29th October 2019

It is always a pleasure to serve under your chairmanship, Mr Pritchard. I congratulate Alec Shelbrooke not only on securing the debate, but on the eloquent way that he presented his arguments, which were excellent and enabled us all to unite around them.

I will speak briefly on behalf of a constituent who wants to be identified, Katie Adwas, who came to see me only last week. She is a teacher, and actually she has a supportive employer. She explained to me what it is like to live with constant pain every second of every minute of every hour of every day, and how exhausting it is to do her job and get through the day. Unless we experience that, it is very difficult to relate to and understand. It makes everything she does in her life so much more difficult.

Although she recognises the need to focus on the world of work, she feels very strongly about the need for a focus on earlier diagnosis, better treatment and funding for research, which the right hon. Gentleman mentioned. It took 10 years—an entire decade—for my constituent to be diagnosed with endometriosis, by which time she was already at stage 4. She initially went to see her GP regarding a problem connected with her periods. As a consequence of that, at the age of 16, she was not only prescribed antidepressants but told that, as a woman, she would have to live with that kind of thing. The right hon. Gentleman alluded to that. At primary healthcare level, GP training is crucial; if that does not happen, we are destined to continue to have many problems.

Katie has also had a number of operations specifically to try to save her fertility. She wants to start a family, but she made the point that, unfortunately, surgery is not always successful. It can lead to the removal of appendix and ovaries, which, along with the condition more generally, can have a horrendous impact on someone’s mental health. We need to be concerned not just about the physical consequences of this condition, but about the long-term and ongoing mental health problems that, for understandable reasons, many women experience.

Katie very much wanted me to be her voice today. Other women in my constituency have been in touch too. I think we heard that one in five or one in 10 women across the country suffer from this condition. That is an extraordinary statistic. As policy makers and legislators, we must recognise that we have failed to act to date, and that we now have an opportunity and a responsibility to take decisive action. It is incredibly important that there is a joined-up approach across Departments. As the right hon. Member for Elmet and Rothwell said, it is clear that there are a number of Departments with responsibility that can make a difference on these issues.

It is also incredibly important that the Department of Health and Social Care does not say, as it often does, “We are not willing to focus on specific conditions; we are willing to have generic approaches to groups of conditions, but we are not willing to train people on, raise awareness of or recognise particular conditions that need a much greater level of central intervention.” It is obvious from the neglect that this condition has experienced for a long time that it needs central intervention. Centrally-driven changes in policy are essential. Of course, delivery has to come on the ground—that is about awareness raising, training, early intervention and education—but we also need a specific focus on this condition.

Photo of Jackie Doyle-Price Jackie Doyle-Price Conservative, Thurrock 3:02 pm, 29th October 2019

I congratulate my right hon. Friend Alec Shelbrooke on the sensitive way in which he introduced the debate. He posed three questions at the end of his speech. The answer to all three is: “Because it affects women.”

I have never been one to claim that we are disadvantaged as women, but I have seen over time that so much discrimination still happens. Never was that clearer than when I served as a Health Minister. Over and over again, I was approached by female colleagues from across the House—we are all very good at fighting for ourselves—who told me about how they had felt diminished at the hands of the NHS when sharing their experiences of quite common conditions.

At the heart of this debate is the fact that 51% of us have periods, so there should be far better understanding of menstrual health and what constitutes a healthy period. I pay tribute to Paula Sherriff for her work in this area. She highlighted to me the under-diagnosis of endometriosis, despite the fact that, as we have heard, it can be a debilitating condition for some women and it is very common.

I had the pleasure of addressing the hon. Lady’s women’s health conference, where I met representatives from Endometriosis UK. They had three jars, which contained physical representations of how many sanitary products someone would use if they had a healthy period, if they had heavy periods or if they had dysmenorrhea, which affects people with endometriosis. That was a revelation. If only young women were shown that when they started their periods, they could manage their menstrual health so much more effectively. I met a woman from Endometriosis UK who was in her early 20s. She had struggled with endometriosis and very heavy periods throughout her teens, to the extent that she had had to have time off school. Seeing that representation had been a revelation for her; she had been able to get the treatment she needed and carry on with life.

That brings me to my final point, which I pitch to the Minister for him to consider when he responds to the debate. We all expect our employers to have good policies on staff wellbeing—we encourage that with respect to mental health and physical health—but we really should encourage them to do much more about really common conditions that can be managed effectively with support. I thank everybody for attending the debate—especially the men.

Photo of Louise Haigh Louise Haigh Shadow Minister (Home Office) (Policing) 3:05 pm, 29th October 2019

Last year, during a round of crucial Brexit votes, I collapsed in the Opposition Whips Office and was taken to A&E over the road. I ended up staying in St Thomas’s for almost a week, hooked up to an IV and pumped full of antibiotics and painkillers, before I was eventually diagnosed: a cyst on one of my ovaries had ruptured and caused an infection. Last week, during a similar round of crucial Brexit votes—it felt very much like groundhog day—I was back in A&E with the same problem, in excruciating pain.

I have not told many people about those instances, but I wanted to speak in this debate because I have realised that, unfortunately, my experience of women’s health is far too common. Last week, I was sent away with painkillers and told, “Cysts rupture in women all the time.” It seems very much that things are allowed to go without treatment and without any knowledge of the cause because they happen only to women.

In her brilliant book “Period”, Emma Barnett makes the point that part of the reason for our failure on women’s health is that we simply do not talk about it. We do not talk about our periods because they are seen as shameful, unhygienic and unclean, and as something that should be kept secret and private—tropes that have been used to subjugate and silence women for centuries. Barnett is absolutely right: societal norms that do not allow discussion of periods and their wider consequences for women’s health mean that women do not seek treatment for their pain—as, for too long, I did not—or that, when they do, they are shrugged off, as I was last week.

On leaving hospital last week, I cried all the way home, in part because of the pain but mostly because I was furious that I had been so instantly dismissed and told I simply would have to live with a syndrome that would cause so much pain and risk on a monthly basis. I knew that countless other women would have been dismissed just as I was and gone home feeling exactly the same, because it is really hard for someone to advocate for themselves when they are in pain and feeling ill. I realised that we have to start normalising discussion about something as totally normal as periods. The current lack of education, awareness and medical research dismisses women and our health problems. It tells us that our pain is less important, and that our fertility is irrelevant.

I really welcome this debate and thank everybody for being here. I commend Alec Shelbrooke for securing it. I am so grateful to women such as Emma Barnett for using their platform to highlight the consequences for women of our failure to address their health, and for risking all the opprobrium they receive for speaking out. I hope that together we can seriously move this agenda forward, and demonstrate to millions of women that their voices are heard and that we will no longer allow them to suffer in silence.

Photo of Sir David Amess Sir David Amess Conservative, Southend West 3:08 pm, 29th October 2019

That was a brave speech by Louise Haigh. I congratulate my right hon. Friend Alec Shelbrooke on introducing the debate.

Since the BBC covered this subject on 7 October, many of our constituents have raised issues with us. I will not repeat them all; I will just pay tribute to Carla Cressy, a local constituent who came to see me at a surgery, described her condition and encouraged me to set up the all-party parliamentary group on endometriosis. We have with us the hon. Members for Sheffield, Brightside and Hillsborough (Gill Furniss), for Dewsbury (Paula Sherriff) and for Kingston upon Hull West and Hessle (Emma Hardy), who are all very active members of that group. I thank them for all their support.

When it comes to appreciating the severity of endometriosis, I was concerned to learn that the universal credit manual states that “endometriosis is rarely disabling”. I am sure that my hon. Friend the Minister will be keen to explain the progress that has already been made on this subject, and I kindly ask that that that guidance is re-examined and corrected. If workplace support is to be suitable, we have to make sure that managers truly appreciate that the condition is not just a little inconvenience; it affects everyone’s lives and can often be disabling. If we truly want progress towards meaningful workplace support, we need to address the concerns of 1.5 million women. I echo the words of Gill Furniss. We should encourage employers to become endometriosis-friendly and make sure that there is access to statutory sick pay for those who suffer from it.

I end with these thoughts: the House cannot get Brexit done, but the all-party group on endometriosis will get endometriosis support done. We are launching an inquiry and will invite Ministers from all the different Departments to contribute. When it is done, the inquiry will not simply gather dust; we will make sure that there is real action.

Photo of Jonathan Lord Jonathan Lord Conservative, Woking

I congratulate my hon. Friend Sir David Amess on his all-party group efforts. May I briefly pay tribute to Ashford and St Peter’s Hospitals trust, a centre of excellence for the condition and the second busiest centre in the country? Does my hon. Friend agree with me that the Department of Health and Social Care, our GP surgeries, our CCGs and our hospitals must do more to publicise the condition and publicise how women can seek the help that they need?

Photo of Sir David Amess Sir David Amess Conservative, Southend West

I absolutely agree with my hon. Friend. We might ask his trust to come and give evidence to our inquiry.

A great service has been done in initiating this debate. It means that we are able to talk about the issue and encourage sufferers. We have heard that one of our own is suffering immensely from this disease at the moment, but our all-party group’s inquiry will make sure that we do far better than we have done thus far to support women who suffer with endometriosis.

Photo of Emma Hardy Emma Hardy Labour, Kingston upon Hull West and Hessle 3:12 pm, 29th October 2019

I thank Alec Shelbrooke for securing the debate. I have campaigned on endometriosis ever since a constituent came to me and explained the long wait she had had, the difficulties she had faced, and the pain she had been suffering. I will take one moment to congratulate her because she has just had a baby, having previously been told that she was possibly infertile, so huge congratulations to her and her family.

I am delighted that endometriosis is now in the education curriculum and part of sex and relationships education. I met the Minister for School Standards and he agreed to include it, so that is great news. In the short time I have available I want to focus on my list of asks for the Minister. One ask is about people with endometriosis having the statutory support that they need and not facing discrimination. Such support includes personal independence payment and other disability allowances. Guidance on endometriosis and its impact on work should be clear so that those assessing an individual’s application understand the debilitating impact that endometriosis can have on a person’s life. I am slightly concerned that when people who have a severe form of endometriosis go for a PIP assessment, they are not taken seriously and the severity of what they suffer is not taken into account.

We must ensure that those with the disease have access to statutory sick pay as well. The current definition and criteria for statutory sick pay fails to recognise long-term conditions such as endometriosis, and statutory sick pay is available only to an employee for a linked period of sickness to a maximum of three years, which penalises people who have chronic long-term conditions such as endometriosis where the symptoms can be felt for life. Those with endometriosis need to be supported through both guidance to employers and statutory sick pay. It must be recognised that chronic conditions may result in intermittent rather than continual symptoms. Again, the guidance does not seem to match the particular circumstances of endometriosis.

I also want to ask the Minister to work with Ministers in the Department of Health and Social Care to ensure that those with endometriosis have access to the right support at the right time, in order to limit the amount of time they need off. I do not feel that the NHS has woken up to the scale of endometriosis, and services do not appear to be planned to support all those who need it. It needs to be taken seriously by commissioning services.

My final ask is that the Department of Health and Social Care looks at supporting the research that has been done at the University of Hull, which has looked at developing biomarkers for endometriosis to reduce the amount of time that it takes to diagnose. They need only £10,000 in seed funding, which would make a huge difference.

I have much more to say, but in the time remaining I will simply echo what many other Members have said: it is time to take women’s health seriously. Will the Department for Education, the Department for Work and Pensions and the Department of Health and Social Care work together to deliver a difference for the many women who suffer?

Photo of Patricia Gibson Patricia Gibson Shadow SNP Spokesperson (Consumer Affairs) 3:15 pm, 29th October 2019

For many people, endometriosis is a condition that they have never heard of, or are certainly not familiar with, yet it has blighted the lives of far too many women. The latest figures suggest that one in 10 women suffer with it. For those women, “suffering” is the correct term to use. In addition, it is associated with being the cause of infertility in 30% to 50% of cases. Shockingly, the average diagnosis time after symptoms first appear is seven and a half years.

Although the condition is not recognised as a disability as such, many women living with it will testify that it can be very disabling and debilitating. At this point, I wish to give a shout out to my constituent, Ann Devlin, who lives in Largs. She has lived with the condition and is what we might call an “endo warrior”, since she has worked tirelessly to raise awareness of the condition and to support other women who live with it. She is energetic, cheerful and resilient in the face of the sometimes great challenges that the condition has placed on her life, but she still inspires, helps and supports others who face similar challenges. I pay tribute to her strength. I know how often the condition has crippled and consumed her, and too many other women. I have huge respect for all that she has done.

I also pay tribute to the work of my husband, Kenneth Gibson MSP, who worked extremely hard to ensure that there was a specialised endometriosis unit to serve women in the west of Scotland to complement the services already provided in units in Aberdeen and Edinburgh. It was simply not fair that my constituents had to travel from North Ayrshire and Arran to Edinburgh for specialist care for this condition, and he has worked hard to secure that change. He has campaigned incessantly for better treatment and greater awareness of the issue, and he was the first to bring the issue of endometriosis to the Floor of the Scottish Parliament in a debate in 2001, and again last year. He is the only Member of the Scottish Parliament to have secured debates on the issue in its 20-year history.

This debate is timely as we seek to address support in the workplace for this condition. Otherwise women find that their contribution to and potential in the workplace and wider economy is lost. Women often lose out on sick pay for the recurring nature of the condition, so that needs to be addressed. It has a huge impact on women’s lives in the world of work as they might require time out for medical treatment and consultations. They suffer pain and fatigue, and the seven and a half years before diagnosis makes it very hard for employers to treat their condition with the seriousness it deserves. We have to keep talking about it. We must keep shining a light on it and raise awareness and understanding. That in itself will do much to ease the burden of women with the condition.

Photo of Justin Madders Justin Madders Labour, Ellesmere Port and Neston 3:18 pm, 29th October 2019

It is a pleasure to serve under your chairmanship, Mr Pritchard. I congratulate Alec Shelbrooke on securing the debate and on the excellent way in which he introduced it. As many Members know, I have spoken in the past about the challenges that my wife faces as a fibromyalgia sufferer, and I can see many parallels between the two conditions, given the debilitating physical symptoms and their unpredictability, as well as the lack of understanding from the public and employers about the conditions and the delays in getting a diagnosis.

I want to speak briefly about the experience of a person I spoke to who suffers from endometriosis. She told me that before she was diagnosed she had regular periods of extreme pain, which she described as more severe than giving birth. She said the contraction-like pains would last for several days a month, which made it difficult for her to look after her children and go to work, yet she did not feel that she could take time off for what her GP described as bad period pains. She went back and forth to her GP for three years and was given increasing amounts of pain medication. Outrageously, she was told that, as a woman in her 40s, she was not expected to have to put up with it for much longer. I simply cannot believe that was the advice. She was eventually diagnosed and had treatment, and she is now on the mend.

Endometriosis UK has called for those with the condition to have access to statutory sick pay. As it stands, the current definition of SSP penalises people with chronic long-term conditions such as endometriosis, whose symptoms can be experienced over many years. What about people who work in the gig economy? How realistic is it for people in agency work or on zero-hours contracts to take time off when they are suffering, knowing that they may not get a call back when the next shift becomes available? We need to think about wider protections.

We also need to make it easier for employers to feel comfortable in talking about endometriosis with their staff, who will hopefully feel more supported if they can have an open dialogue. An endometriosis-friendly employer scheme would be helpful in that respect and would effectively mean people could manage their conditions better in the workplace. Some of the examples given by the right hon. Member for Elmet and Rothwell about how people have been treated in the workplace show that there is an awfully long way to go.

This is a good opportunity for the Government, and for Parliament, to lead by example and become endometriosis-friendly employers. I would be happy if we could support that scheme. We must step up the fight here to ensure that all women who suffer from that terrible condition have the support they need in the workplace. That means strengthening workplace protection so that women do not feel that they need to fight their employer as well as the condition itself.

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health) 3:21 pm, 29th October 2019

I congratulate Alec Shelbrooke on bringing this matter to the attention of the House. As the father of three sons, I must admit that the subject of periods and “women’s concerns”, as my mother used to call them, was not my forte. Paula Sherriff will know what I am about to say, as I have told her before—and I commend her for all that she does and for the event that she held in Portcullis House. It was helpful for everyone to be aware of the issues.

In my office five out of six staff members are female, and two of those girls suffer from endometriosis. I have overheard too many conversations to ignore the issue and leave it in a pile marked as women’s concerns. I married my wife some 32 years ago, and at the time she suffered from endometriosis as well. The doctor told her, “If you have some children, that will clear it up.” Well, we had three children, and it did not clear it up—that is a fact.

I did a little research, with the help of the House of Commons Library, and the briefing states:

“It is not known how many women are affected by endometriosis in the UK, there are no official figures collected on prevalence but a figure commonly cited is that it is estimated to affect 1 in 10 women. In 2015, the Royal College of Nursing reported that ‘the exact prevalence of endometriosis is unknown but estimates range from between two and 10 per cent of the general female population but up to 50 percent in infertile women.’ The NHS does collect data on hospital admissions where endometriosis was the primary condition—in 2018-19 there were 23,000 hospital admissions where the main cause was endometriosis in England.”

I will always bring in the perspective of Northern Ireland, where nearly all the 380 women who took part in BBC research said endometriosis had badly affected their mental health, career opportunities, sexual relationships and education. The latest figures show that in Northern Ireland the number of women waiting for a gynaecology outpatient appointment rose from 7,700 in 2012 to 17,000 in March. That is a massive increase of about 120%. In 2010, 221 patients were waiting for a laparoscopy, and by March this year the number had almost tripled to 606. That shows that the issue is becoming more prevalent. Of those waiting, nearly half have been doing so for more than six months. Those women are being failed by the NHS. Yet we expect them to continue to go to work with immense pain, feeling ill and sometimes unable to move. Worse, we live in a society where we have been trained not to talk about it. We talk about migraines openly in the workplace, but the debilitating disease of endometriosis is just as deserving of consideration and support in the workplace.

I firmly believe that we must begin a campaign to raise awareness of the problem for women, and of how gentle support can and must be put in place. That support can range from more frequent rest breaks to a change of activity during flare-ups in manual labour jobs, and even flexibility in sick day procedure. It is just a matter of understanding, being compassionate and sincere and trying to help—having empathy. I believe the change must start from here and work its way through all public sector jobs. I look to the Minister, as always, to understand how and when he intends to implement that support system.

Photo of Paula Sherriff Paula Sherriff Shadow Minister (Mental Health and Social Care), Shadow Minister (Mental Health) 3:24 pm, 29th October 2019

Thank you for accommodating me in the debate, Mr Pritchard. I had not intended to make a speech but was inspired by my hon. Friend Louise Haigh, who spoke of her own experiences.

Many Members may know that one of the main issues that I have championed since coming to this place in 2015, besides constituency issues, has been women’s health. Largely that has been the result of my own experiences. I have an endometrial disease and, thankfully, I was lucky with respect to workplace issues. I worked in the NHS through most of the time in question, including diagnosis, so my employers were reasonably understanding when I went through chemical menopause at the age of 36 or 37. I want to stress how important it is for women to seek help at an early age if they experience abnormalities or, as in my case, very heavy and painful periods.

The thing that really encouraged me to seek help was when went to Asda after work one day and fainted from the pain. I have never experienced childbirth, so I cannot compare it, but it was the most chronic abdominal pain. I worked in a hospital at the time. I will not use the words that I said to Sir David Amess, for fear that they might be unparliamentary. I chose not to see the gynaecologist in the hospital where I worked because I thought, “If he has been looking at my nether regions I don’t particularly want to bump into him in the hospital canteen,” so I got a diagnosis at another hospital in the neighbouring trust in south Yorkshire. The gynaecologist was a mature gentleman and was very rude, saying to me, “Put up with it; you’re a woman, and women have periods.” I found that absolutely devastating and, like my hon. Friend the Member for Sheffield, Heeley, I went home and cried. I thought, “I have to put up with this. This can’t be right.”

Years later I got a diagnosis—at the hospital where I worked, ironically. That gynaecologist has since emigrated to New Zealand, although I am assured that it was nothing to do with me. Within minutes of meeting me he said, “I know exactly what’s wrong.” I had already had three lots of surgery—two laparoscopies and one hysteroscopy. He allowed me to have the chemical menopause or a hysterectomy. I chose the chemical menopause because I still harboured hopes of having children. Thankfully, I was one of the women virtually cured by it. It brought some other health challenges. There is a message in that, about empowering women to ask for a second opinion. There is nothing wrong with doing that.

Traditionally in this country—thankfully, things are changing gradually—legislation has been made by men. If I have a headache or break my leg, men can empathise, because they have heads and legs too. But if I have a problem with my periods or my womb, we are still playing catch-up. I feel that the tide is turning. I congratulate Alec Shelbrooke, whose speech was excellent.

Photo of Khalid Mahmood Khalid Mahmood Shadow Minister (Foreign and Commonwealth Affairs) (Europe) 3:27 pm, 29th October 2019

I appreciate that I am late in coming to the debate, Mr Pritchard, but it is an important issue, and I thank Alec Shelbrooke for obtaining it. The issue is not recognised by most people. In particular, women end up taking a huge amount of painkillers—not just during their periods but when the pain is excruciating and they are unable to move or do anything. That has a huge effect on their kidneys. I have had a kidney transplant, and I understand that. People say, “Just take some more painkillers,” but that is not the way to solve it. We must look at how employers deal with it, and how the NHS deals with it. That is the most important thing, and I wanted to make that point because I have a friend who is a sufferer.

Photo of Hannah Bardell Hannah Bardell Shadow SNP Spokesperson (Digital, Culture, Media and Sport) 3:28 pm, 29th October 2019

I congratulate Alec Shelbrooke on securing the debate. I put a shout out on social media yesterday and was overwhelmed by the responses I got from women across my constituency and beyond. When I posted something about the debate, asking people to watch it, a post came in from a woman who said, “It nearly killed me”. That goes to the heart of the issue and conveys the severity of endometriosis symptoms.

A statistic that I was not aware of, which came up early in the right hon. Gentleman’s speech, is the 62% increase in the rate of heart attacks among those who suffer from endometriosis. One of my staff members had a hysterectomy because of endometriosis, and she suffers from a number of other health issues, which we have done our very best to accommodate and support her through. I have seen the pain that she went through. A number of my friends suffer in this way; one of them, Sabrina, got in touch with me. I remember working with her in Aberdeen, and recall the pain and suffering that she went through—and, sadly, the lack of support that she often received from employers, was significant.

The right hon. Gentleman mentioned an anonymous person who had got in touch with him and who worked at HMRC. Another woman from HMRC—she does not want to be named—got in touch with me, and said that she feels unable to miss work appointments, and that the condition has had a deep emotional impact and caused her huge anxiety. She said:

“I work in a male dominated civil service department and have had my concerns ignored, and a previous manager even refused to document the condition as it made him feel uncomfortable.”

The fact that so many men are speaking up about this issue today—the husband of my hon. Friend Patricia Gibson has also raised it in the Scottish Parliament a number of times—goes to show that there are men out there who care. We must ensure that every employer does, and we can make a significant dent in that by getting the UK Government to commit to ensuring that HMRC, and all other Departments, are sensitive and prepared for something that is clearly an issue in their own house.

This has been a hugely consensual debate. I do not want to be overly critical, but we cannot have consensus just in Westminster Hall today and nowhere else. We can do something about this issue if we work together. We heard what Paula Sherriff has had to endure, and Louise Haigh spoke powerfully about her experiences and the work she has done. There is huge expertise in this room, but I also wish to give a voice to some of the women who have got in touch with me. One said:

“I was lucky to have a good employer and eventually they sent me home with the promise that I go to the doctor, as the pain was so bad one day.”

She said that her doctor had no clue what the problem was, and she had to go to hospital many times after suffering for 10 years. Another women, Ailsa, said that the condition

“completely impacted my work and social life due to the pain, anxiety and isolation”.

Rebecca said that endometriosis had a life-changing impact on her mental health. She has been trying to reduce her working hours, but that has not yet been implemented, and she has been off sick since August.

A number of women got in touch to say that their employers have been sensitive to this issue, but so many are not. Raising awareness of endometriosis is our duty, but doing something about it is even more of a duty. One woman said that she was constantly being called to see HR, and then being called a liar and threatened with dismissal. Another woman said that her employer had refused to provide a sanitary bin because it was “too expensive”, and he did not want to add it to the costs of the business. It is incredible that although 1.5 million women are affected by this condition across the UK, we still have employers who think such behaviour is acceptable. Let us be clear: they are breaking the law.

Legislation alone will not solve the problem. Earlier I spoke about ENDO Warriors West Lothian, which was founded in 2017 by Candice McKenzie and Claire Beattie, and I pay tribute to them. They recently walked, as did I, on the Kiltwalk in Edinburgh to raise money for the EXPPECT Centre, which is a specialist clinic for endometriosis. We must also recognise the challenges in rural areas in Scotland and across the UK. Women in rural areas have to travel further to reach services, and good practice is particularly important.

Another constituent, Rachel, said that she lobbied her employer, and they now have an understanding. She has been able to get better support, whereas previously she lost pay or had to take holidays to attend operations or hospital appointments. She was unable to get sick pay, which added to her stress and financial worry, and those poor experiences resulted in her taking more time off. One woman told me that she is fighting her employer to get reduced working hours, just so she can work at a desk. We are all employers, and it is our duty to support our staff.

Emma got in touch with me to say:

“25 years blessed with a curse…finally diagnosed 15 years ago after 10 years of being palmed off.”

She was told that she suffered from hypochondria—that old chestnut—and that periods were “meant to be painful”; that was said by a man. Someone said, “I’m sure your pain is very real to you,” as she crawled to A&E, crying her eyes out and vomiting in pain. She was told that periods cannot cause leg pain—she uses crutches some of the time—and she often passes out from pain when going to the toilet. She was told, however, that she looked “fine”. She wrote:

“Through the years I’ve passed out so much that my bathroom floor has had more hits than Take That”.

That goes to the heart of the issue.

Shirley said that she

“worked full time and had NO support from bosses and management…even after my specialist wrote to them I still got no support…in fact they stressed me out that much I had a heart attack”.

Such experiences are outrageous, and wherever we find them, we must call them out. Not every woman can get in touch with her employer, or ask a specialist to write a letter. We must do everything we can as Members of Parliament and legislators to change the narrative, change the law if necessary, and work holistically across Departments and the UK to ensure that women who suffer from endometriosis get a proper diagnosis at the proper time and the right support. When women are at work, they should not be persecuted for something over which they have no control.

Photo of Mike Amesbury Mike Amesbury Shadow Minister (Work and Pensions) (Employment) 3:36 pm, 29th October 2019

It is a pleasure to serve under your chairmanship, Mr Pritchard. I congratulate Alec Shelbrooke on securing this important debate.

We have heard excellent and powerful contributions from 15 hon. Members about the profound impact that this complex and debilitating condition can have on our constituents—and on Members of the House, including my hon. Friend Louise Haigh. It is extraordinary to think that nearly as many women in the UK have endometriosis as have diabetes, yet the suffering associated with it is often private and unseen. Part of the issue is a still-ingrained culture of silence and even shame when it comes to women’s reproductive health, and the pervasive attitude that serious menstrual pain is normal and natural. It is not.

When such attitudes collide with working life, the effects on women can be profound. For the 30% of women with the disease who have severe endometriosis, the condition can stop them working in the way they want. As we heard from hon. Members across the House, some women report finding conventional, full-time jobs impossible to hold down because of the impact of the condition on the hours they can work—zero-hours contracts have been mentioned—and the tasks they can perform. In some cases, women are literally managed out of work. Recent research shows that such actions can lead to those women who are most severely affected losing on average more than £5,000 in earnings a year, and one in six women gives up work entirely. We cannot afford to ignore this condition any longer.

Workplace attitudes often do not help. Today, we have listened to the experiences of women, and we heard the same stories over and over: when it comes to endometriosis, women are often not believed or supported by doctors, employers or even loved ones. Almost all women who responded to a recent BBC survey on endometriosis felt that their career had been hampered. The knock-on effects of endometriosis on mental health are shocking; almost half of the women surveyed reported that they had experienced suicidal thoughts.

Endometriosis UK provides information and guidance for employers and employees, but workplace guidance from the Government is still lacking. Endometriosis is not mentioned in several mainstream Government resources on occupational health and disability. Government acknowledgement is a vital part of awareness and recognition of endometriosis; in the absence of that acknowledgment, the condition is often framed as a performance issue, rather than a health concern. Will the Minister commit to changing this discriminatory practice? As Sir David Amess highlighted, some of that has to do with the Department for Work and Pensions.

Another problem raised by Endometriosis UK is statutory sick pay. The current guidance limits statutory sick pay to three years—much less than half of the average time it takes a woman suffering from endometriosis to be diagnosed, let alone their total time living with the condition. Endometriosis is a chronic, complex and fluctuating condition. Will the Minister do everything he can to ensure that statutory sick pay reflects reality?

Concerns have also been raised by the Work Foundation about how guidance for benefits such as the personal independence payment covers endometriosis. It has been suggested that its potential severity is not accurately reflected in guidance provided to assessors. Concerns have also been raised that references to “lifelong” conditions in disability policy have the potential to exclude women with this condition. Considering the number of women affected by endometriosis, and its impact on working lives, what will the Minister do to investigate that and ensure that women receive the support they need?

In 2017, the main recommendation in the first ever guidance on endometriosis produced by the National Institute for Health and Care Excellence was that medical professionals should “listen to women”. I advise the Government to do the same. Listen to what has been said in the Chamber. Listen to research and testimony. Listen to the outcome of the APPG inquiry. Listen to what women, and the organisations that represent them, are telling Ministers about the help that they need, and commit to addressing the unacceptable shortcomings in support for those who suffer with endometriosis.

Photo of Mark Pritchard Mark Pritchard Conservative, The Wrekin

As the debate is due to finish at 4 pm the Minister has, helpfully, a little more time than usual. If he is so minded, he can allow Mr Shelbrooke two minutes at the end.

Photo of Justin Tomlinson Justin Tomlinson The Minister of State, Department for Work and Pensions 3:42 pm, 29th October 2019

Thank you, Mr Pritchard. It is a real pleasure to serve under your chairmanship once again for this important debate. I congratulate my right hon. Friend Alec Shelbrooke on securing this debate, which provides an opportunity to discuss this hugely important and overlooked condition.

It is clear that there is overwhelming cross-party agreement, with little to disagree with in the sentiment expressed. I am incredibly impressed with the references to digital engagement and with how most hon. Members who spoke have been personally contacted or have personal experience of the impacts. It was clear to see genuine emotion from people watching the debate, and that is because this genuinely matters.

It has been highlighted that this issue cuts across many Departments. I represent the Department for Work and Pensions, but there is clearly a big role for the Department for Business, Energy and Industrial Strategy in how employers are acting, for the Department of Health and Social Care on awareness and how long it takes to get the correct diagnosis, and for the Department for Education in raising awareness at a younger age, although it does see that there are positive steps. To ensure that nothing falls between the cracks, my Department recently moved the Office for Disability Issues to the Cabinet Office. We are still responsible, but it is based in the Cabinet Office so that on cross-cutting issues such as this it can be the eyes and ears, making sure that there is a joined-up approach.

I absolutely give a full commitment, on behalf of the DWP, that we will engage fully with the APPG review, to identify areas where we can improve awareness with our frontline staff, and improve how we handle benefits, support and everything that we can possibly do. We will also do everything we can to encourage the other three Departments, which I have no doubt will be just as willing to be proactive in this area. With the APPG’s helpful, constructive, proactive review, using the wealth of experience that is out there, hopefully together we can make a big difference.

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health)

We clearly welcome what the Minister just said, but as the shadow Minister said, surely there needs to be an understanding in the DWP of what endometriosis is and what its symptoms are, so that that is reflected when considering someone’s benefits. As elected representatives, we sometimes find that that is not the case. How will the Minister ensure that the Department and officials can make that change?

Photo of Justin Tomlinson Justin Tomlinson The Minister of State, Department for Work and Pensions

That is what I am articulating. We want to know that all our frontline staff and systems are taking that on. People are raising concerns that may not necessarily be directly linked to the DWP, although they may be. That is why I want to commit as much as I can to support the review, because if there are areas in which we can improve, we should and will improve in them. There is a genuine commitment.

Photo of Louise Haigh Louise Haigh Shadow Minister (Home Office) (Policing)

The point about taboos has been raised by many people, and the fact that this condition is so under-researched and given so little airtime because it relates specifically and only to women. I bring the Minister’s attention to the #periodpositive pledge, developed by my constituent Chella Quint, which campaigns against menstrual taboos and asks particularly for all official documentation to explicitly use the terms “menstrual issues” or “mental health issues” rather than euphemisms such as feminine and sanitary hygiene.

Photo of Justin Tomlinson Justin Tomlinson The Minister of State, Department for Work and Pensions

That is a really helpful suggestion, which we will make sure is fed in.

Photo of Patricia Gibson Patricia Gibson Shadow SNP Spokesperson (Consumer Affairs)

I welcome what the Minister said about the DWP looking at how it can raise awareness of the condition for frontline staff. Does he agree that it is important to look at how sick pay works? Given the recurrent nature of the condition, it often has a financial cost to women in days lost to sickness. Will he commit to looking at whether endometriosis can be accommodated?

Photo of Justin Tomlinson Justin Tomlinson The Minister of State, Department for Work and Pensions

I will come to that in my speech, so I ask hon. Members to be a little patient. I will cover most of the points raised.

When, of the four Departments, my Department and I were selected to respond to the debate—one of four Ministers could have been selected to respond—my initial reaction was: do I know much about this? I was contacted by a former employee, Kamya Gopal—she is happy for me to name her—who had this condition. When I employed her, we had had a conversation and made some relatively easy changes that involved being sympathetic: she had to go for short-notice GP appointments; we took into account a need for urgent toilet breaks when doing visits, making sure we were not too far away; and we took things on a day-to-day basis. For a reasonable length of time, no changes were needed. Sometimes they were, and we just accepted that, and it worked. The key thing is that it was easy for me to make those changes, and I as an employer benefited, for four years, from a really valuable member of my team. It was a win-win from having the confidence to have that conversation. She made it clear to me—this has come across clearly in hon. Members’ speeches—that it affects everyone differently. For her, it is a family trait, but they all have different symptoms and challenges to overcome. It all comes down to having that conversation.

Linked to that, another impact is the need to use disabled toilets. Kamya has a RADAR key—it is a hidden disability—and recently someone challenged her for using the disabled toilet. She had to explain, which was embarrassing for her and for the lady who challenged her. That is why I pay tribute to Martin Whitfield, who has been championing Grace’s sign, which is fully supported by my Department, to raise awareness of hidden disabilities and hidden health conditions and avoid those confrontational, embarrassing situations.

It is important that people with health conditions get the support that enables them to stay in work, and productive in work. Such support is wide-ranging and relies on employers being open to discussing health matters with their employees in a respectful and constructive way.

I am on my fifth Secretary of State as a Minister in the DWP, and I have many roundtables with different stakeholders. We were talking about disability employment yesterday, and it was interesting how there has been a shift in focus to ensuring that people do not drop out of work due to disability or a health condition. Collectively we must do much more in that area. I am encouraged that there is increasing awareness and recognition of hidden disabilities, and hidden health conditions in particular. There is still a huge way to go, but there is a willingness in society to do better.

Endometriosis is a serious condition; we have heard about the ways that it can be debilitating. For the estimated one in 10 women in the UK who suffer, the condition can have a huge effect on their daily lives, including their ability to work to their full ability. As the examples quoted by various Members today show, diagnosis is not always straightforward. Problems arise because symptoms can vary significantly, and because diagnosis tends to require invasive procedures. I do not profess to be a health expert, but it is clear that because endometriosis is seen as a taboo, that will impact on the ability to diagnose and provide support. Members have spoken powerfully about how we have to do much more in that area.

The challenging nature of the condition is recognised within the health system, which now has specialist training. NHS England has developed a service specification for severe endometriosis under the specialised commissioning area of complex gynaecology. That is a good step. It is the beginning of the journey and we will have to see what difference it makes, but I am encouraged that it is starting to happen.

Through these measures diagnosis and treatment should improve, but we must also consider the effect on the ability to work. A survey by investment firm Standard Life found that one in six women with endometriosis report having to give up work because of the severity of their symptoms, with almost all—some 87%—reporting that the condition affected their financial position in some way.

Individual women feel the harmful effects, but employers and the economy as a whole lose out. The leading charity, Endometriosis UK, has estimated that the total cost to the economy of the condition is £8.2 billion; the cost from loss of work is a key contributor to that figure. As outlined in the Work Foundation report, such an impact means that the days of dismissing topics such as these as “women’s issues” are long gone. We know that both the health and work landscapes must be more aware of the condition and its symptoms, for the sake of the women who suffer from it and in order to build a healthier and more productive society for all.

One way that people in work are protected is through the Equality Act 2010, which is the principal means through which disabled people are protected from discrimination in Great Britain. Other than for a very few exceptions, the Act recognises a disability by the impact on the person’s life rather than by the condition itself. Importantly, that means that women with endometriosis are protected by the Act if their condition has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities. I recognise the points that have been highlighted about how we need to improve the awareness and the enforcement of the Act, and about wider support. I will come on to some of the work in that area.

Individuals are also protected in law against unfair dismissal. While those legal protections exist, sufferers continue to face barriers to work and barriers in the workplace, as we have heard. More must be done to raise awareness of hidden conditions. Workplace cultures must adapt to spread understanding of the importance of supporting individuals with health conditions and the value of open discussions about health in the workplace.

Photo of Alec Shelbrooke Alec Shelbrooke Conservative, Elmet and Rothwell

Can my hon. Friend pick up on the specific point that was raised about HMRC by myself and Hannah Bardell? I absolutely agree with what he is saying, but it seems like an easy starting point to address that point with a Government Department.

Photo of Justin Tomlinson Justin Tomlinson The Minister of State, Department for Work and Pensions

Yes, absolutely. HMRC has been named and shamed in this debate; we will make sure it is made aware of that. I hope and expect that it will act to improve on that.

Photo of Hannah Bardell Hannah Bardell Shadow SNP Spokesperson (Digital, Culture, Media and Sport)

Will the Minister guarantee that no employee of HMRC. or any other Government Department. who has spoken out or contacted their MP will be persecuted or disadvantaged in any way in their place of employment? Because of the treatment she had experienced at HMRC, the constituent who contacted me was concerned that she would be putting herself at further risk if she were to be named. That is why I have not named her. Can he give me that guarantee?

Photo of Justin Tomlinson Justin Tomlinson The Minister of State, Department for Work and Pensions

That is absolutely understood. It is underpinned by the Equality Act 2010, which protects workers in the workplace.

Unfortunately, as highlighted, there remains stigma and taboo attached to discussing health issues that affect women. I think my hon. Friend Jackie Doyle-Price said that she was pleased to see so many men contributing or responding in this debate. I recognise that that is important. I also welcome the recent media focus on endometriosis, which has begun to break down some stigma and taboo. There is still a long way to go. This debate alone highlights the need to do more. Women, particularly young women, must know that they do not need to suffer in silence. This is one of the few issues that unites us across parties; those who have campaigned on this issue should take credit for helping to secure that cross-party support.

I find cause for optimism in parallels with work supporting other hidden disabilities, such as mental health issues, where we have been able to raise awareness. There has been a desire in all parts of society to improve what we can do. We need to replicate that with this condition in light of the concerns that have been raised.

The Government’s main role is to create conditions in which employers can do the right thing. In mid-July we published a consultation on proposals to reduce ill-health-related job loss, called “Health is everyone’s business”. The consultation closed on 7 October, but I will try to make sure that everything that has been raised today is fed into that. There were some helpful insights.

The proposals covered a range of areas, such as changes to the legal framework to encourage employers to intervene early during sickness absences and provide workplace modifications; the reform to statutory sick pay, which many Members have highlighted as an area of particular interest; and better provision of information and advice to employers on health issues in the workplace, which is important to me.

We often think about big businesses that have HR and personnel departments. As long as the key decision makers at the top can be convinced about what their organisation should be doing, there are professionals who are comfortable making sure that that is embedded in the culture of the organisation. As an example, I pay tribute to John Lewis & Partners; I spoke at an event in Parliament last week about its provision of good in-work health support for its staff.

However, over 50% of private sector jobs are in small or medium-sized businesses. With the best will in the world, they do not have HR or personnel departments, so we must do far more to ensure that they have information and to signpost them to organisations and groups that can provide the next level of support. I want to see that delivered through the Health and Safety Commission. We are brilliant at supporting safety in the workplace; we have to have the same approach on health and on improvements to the quality and accessibility of occupational health services. These proposals do not name and target specific conditions, but they will reduce ill-health-related job loss across the board, which will benefit those suffering with endometriosis.

I again thank my right hon. Friend the Member for Elmet and Rothwell for highlighting the powerful words of many of the people who contacted him. I know that, with over 2,000 responses, he had a lot to choose from. One response that articulated the value of flexibility particularly well said:

“You don’t know how your pain is going to be that day. You could be absolutely fine, or you could be crippled.”

Being able to adjust workload on a given day, or to choose to work from home, will enable women who experience fluctuating symptoms like that to stay in work.

The Government are committed to showing employers the business case for this flexibility, and to showing that a more productive and engaged workforce, with better retention, will be the end result. I say that with genuine passion. I have employed many people with health conditions and disabilities, and I have benefited from that.

I have been grateful for the opportunity to address the issues raised. Endometriosis is a condition that we all need to take seriously, and those with the condition need all the support they can get. I trust I have been able to offer reassurances to hon. Members about the support and protection available, and about the measures that this Government are taking to support and encourage employers to support their employees with health conditions and create workplaces where everyone can thrive. We have much more to do. The all-party parliamentary group on endometriosis allows Members who have a real interest, passion and knowledge of this area to contribute. All Departments must take that seriously.

Finally, I pay tribute to all the volunteers who are providing support groups across the country, among our local communities. They are making a real difference, ensuring that people realise they are not suffering alone.

Photo of Alec Shelbrooke Alec Shelbrooke Conservative, Elmet and Rothwell 3:58 pm, 29th October 2019

I thank every single right hon. and hon. Member who has contributed today. Given the times we are going through, it goes to show the strength of parliamentarians from across parties that we have come together to deliver a clear message about where we want to get to as we move forward.

My main aim today was to raise the issue further into the public perspective. I welcome the Minister’s words; I know the APPG will be feeding into that. I am excited by the fact that the issue is now with the Cabinet Office, so that it can look at it across Departments. We have made it clear—all coming at the subject from different angles—that we need different Departments to get a handle on the issue if we are to sort it out.

I pay personal tribute to the hon. Members for Sheffield, Heeley (Louise Haigh) and for Dewsbury (Paula Sherriff). Many of us in this Chamber suffer from health issues, but not many of us are brave enough to stand up and say what they are. People who inspire other people make change possible. Being able to look at someone who is in the position of being a Member of Parliament and say, “That person has the same thing I am suffering from,” hopefully lets the word spread. Fundamentally, we have to break down the taboos. We have to educate better in the workplace and use the education system we have, but we have to break down the taboos. We have made a good start today.

Motion lapsed (Standing Order No. 10(6)).