That this House has considered the matter of supporting people with endometriosis in the workplace.
What a pleasure it is to have you in the Chair this afternoon, Mr Davies.
It would take 20 days, at 24 hours a day, to name every woman in this country who suffers from endometriosis. That is the scale of the problem that we are dealing with. It is bad enough that it takes eight years on average to get a diagnosis, and that there is a lack of settled opinion on the surgery required. It is also bad enough that the blunt truth is that, even in today’s age, the main coverage given to this debilitating disease seems to be when a man stands up and talks about it. I have fantastic support from people such as the hon. Member for Livingston (Hannah Bardell) and other hon. Members, who have supported at every step of the way the debates that I have brought to the House; there is absolute cross-party support for tackling women’s health issues.
Unfortunately, I am often asked, “Why are you doing this, as a man?” I remind people that as Members, we represent everybody in our constituencies, and for most of us, probably over 50% of our constituents are women. It seems bizarre to question why a Member of Parliament would raise issues about the opposite sex; to me, a constituent is a constituent. Endometriosis is such a wide-ranging affliction that affects so many women, and it is so unrecognised.
Today I seek to talk about women’s suffering in the workplace, which mainly comes about through a complete lack of knowledge about this disease. I will start by describing endometriosis. I am grateful to Heather Guidone, board certified patient advocate and surgical programme director at the Centre for Endometriosis Care, for sending me the text entitled “A riddle wrapped in a mystery inside an enigma”, which states:
Hannah Bardell (Livingston) (SNP)
The right hon. Gentleman is making an incredibly powerful speech. The issue is absolutely about conditions like endometriosis, but does he agree that it is also about a basic lack of compassion for women who have periods every month? In January, Dr Rosie Baruah backed the British Medical Association’s call for period products to be provided in all NHS staff toilets. She said the products should be viewed as a basic necessity, not a luxury. The outcry from some men was utterly appalling. The lack of understanding of how challenging it can be for someone when they bleed through their clothes and do not have access to products or toilets was shocking. We need to do much more to get a basic understanding across society and to put policies in place—for endometriosis, but also just for periods.
I am so grateful to the hon. Lady, who raises a point that comes up time and again. I do not believe that the majority of people are that unkind, but they just do not know what they are talking about. Her point speaks to a wider issue. People think it is acceptable for there to be an outcry about supporting women in the workplace. That is the problem we face. We have to change societal thinking on these issues.
I will continue sharing the experiences of patients. No. 9:
“I have to use my annual leave after operations in case I get ill during the year and need time off.”
No. 10:
“The problem, they find another way to get you out. They go for competency & make your life hell, picking up on every little point & you don’t have a leg to stand on. I’m so miserable at the moment.”
No. 11:
“This debate couldn’t come at a better time my boss is starting to give me a rough time because I was really rough last week and I even collapsed in work and ended up in hospital and he still expected me to be back in work the following day and this week he gave me a warning letter about my days off and now it’s really worrying me.”
No. 12:
“I was off sick and recently dismissed whilst off sick.”
No. 13:
“I lost my job years ago due to having a few periods off sick for surgeries and some emergency surgeries. All of these were for endometriosis. I worked for the NHS!!! They don’t care whether you have genuine reasons or not, other people take time off for a common cold etc whereas I went to work in severe pain most days; but the hard work I put in was not appreciated.”
What we are dealing with here is constructive dismissal, which is illegal in this country, but is just being swept under the carpet.
Diolch. It is always a pleasure to serve under your chairmanship, Mr Davies. I offer hearty congratulations to the right hon. Member for Elmet and Rothwell (Alec Shelbrooke) on securing this debate today and on making a fantastic speech, which I agree with wholeheartedly. I commend him on his vociferous campaigning and support for women experiencing and suffering from endometriosis. It is so important that we have male allies speaking up and talking about the issue. Let us be honest: if the condition affected men, we would not need this debate in the first place. I have spoken passionately about this topic on numerous occasions, so I will try my best to keep my comments brief.
Endometriosis really is an issue that cuts across the political divide, as we have seen today, and I am pleased to see it increasingly receive the attention it deserves, both in this place and on the national and international stages, too. Only a few months ago I spoke, along with colleagues here, in a petitions debate relating to research into endometriosis and polycystic ovary syndrome, and I am sorry to say that, despite the success of both the petition and the debate that followed, little has changed in terms of Government action.
We all know that the number of women living with endometriosis is colossal. Some 1.5 million women are dealing with symptoms ranging from chronic pain and fatigue to infertility, and the research, awareness and support for those suffering from what—as we have heard —can be an extremely debilitating condition is still lagging far behind, and is lacklustre at best. It is clear from speaking to constituents and personal friends of mine who live with endometriosis that there is a lot of work to be done to educate people about the symptoms that can be involved for those suffering.
That is why I am so pleased that today’s debate is focusing on the issues faced in the workplace when living with endometriosis. I genuinely believe that we are making progress in terms of the conversation around gynaecological conditions such as endometriosis. We are seeing a more open approach to topics such as the menopause, period poverty, polycystic ovary syndrome, infertility and many more, and while of course there is always more to be done, I welcome the slow steps that we are taking towards making these perfectly normal conditions part of mainstream dialogue. Sadly, the impact that endometriosis can have on working women is an area that requires more positive change. Coronavirus has shown how quickly working environments can adapt when necessary. From increased working-from-home guidance to flexible hours, small logistical changes can have a huge impact on the quality of life of those suffering with the debilitating pain that endometriosis can often bring.
3:03 pm
Hannah Bardell (Livingston) (SNP)
It is a pleasure to serve under your chairmanship, Mr Davies. I once again congratulate the right hon. Member for Elmet and Rothwell (Alec Shelbrooke) on having raised this issue, and thank him for doing so. Less than a week ago, we were in this Chamber together debating the Cumberlege report and the terrible treatment of women who have suffered from the hormone pregnancy drug Primodos. It feels very much like we are here time and time again discussing how women are being systematically discriminated against in our society, in 2022 and 21 years since endometriosis was first debated in the House of Commons—Members may not know that. I read recently that the people who will lose out most when covid is over are women, who are less likely than men to return to work because of the challenges of childcare. It is always women who seem to lose out: as the hon. Member for Pontypridd (Alex Davies-Jones) said, if this were a man’s issue, I suspect we would not even be having this debate. However, we need men in the debate and in the round, discussing with us and pushing ahead, because this issue will affect them, their families, their partners, their children and the people around them.
We all have local endometriosis groups in our constituency, and I pay tribute to those local groups, particularly to Candice and Claire from Endo Warriors West Lothian. They are both sufferers of endometriosis and they fight relentlessly for sufferers in their area. Endo Bonds is another Scottish group I have met with recently, and Endometriosis UK does fantastic work. As the new co-chair of the all-party parliamentary group, along with the hon. Member for Kingston upon Hull West and Hessle (Emma Hardy), we pay tribute to Sir David Amess and his work on the issue. He was an important and doughty champion for those who suffer from endometriosis.
It feels like endometriosis is to do with policies and legislation, which are dry, dull and boring, but it is the reality for women and endo-sufferers every single day of their lives that they are being discriminated against. That might not be the intention of the employer. I think it sometimes might be accidental, because the legislation and policies in place across the UK do not support, understand or recognise endometriosis as a chronic and debilitating condition that one in 10 women suffer from—so many women. It is a hidden condition and there is little or no awareness of it—although I think the hon. Member for Pontypridd is right that things are changing.
Sceptical and unaccommodating employers in the workplace can have a devastating impact on sufferers. In our APPG inquiry in 2020, we found that 55% of sufferers had taken time off work as a result of their endometriosis; 38% were afraid of losing their jobs due to the condition; and 35% reported reduced income as a result. One sufferer said,
It is a pleasure to serve under your chairmanship, Mr Davies. I congratulate the right hon. Member for Elmet and Rothwell (Alec Shelbrooke) on his fantastic opening speech and continued advocacy on this issue. It is so important.
As a member of the APPG on endometriosis and as someone who lives with endometriosis, I am always pleased when it makes it on to the parliamentary agenda. It gives Members an opportunity to discuss the policy changes that need to be introduced. We have heard that the first time it was discussed was 21 years ago, and not enough progress has been made.
During the last debate on endometriosis and polycystic ovary syndrome, I took the time to share my own experience and the difficulties that I and others have daily. I spoke of the general process of going through diagnosis and treatment, because it is not in any way easy. The symptoms go from physical to mental, and it can ruin every single day. Members have been reminded today, and may recall from the last debate, that it takes up to eight years for the average woman to be diagnosed in the UK.
I would like Members to consider what that actually means for people who live with endometriosis every single day. It is eight years, potentially, of living in excruciating pain, waiting for a GP to diagnose the cause of the pain and being gaslighted by the GP and other health professionals while continuously asking about the pain. The pain is so severe that it can prevent someone from carrying out everyday activities, and it can be incredibly disruptive to working.
When I shared my experiences, I did not have the time to talk about how I dealt with my pain at work. When my endometriosis became bad and I was starting to look for a diagnosis, I actually worked here as a parliamentary assistant. Without a diagnosis, people are finding that they have nothing to show their employer to explain why they need time off. When their symptoms are really bad, they have nothing to point to as a legitimate request, in an employer’s eyes, for flexible working.
Dr Dan Poulter (Central Suffolk and North Ipswich) (Con)
I thank the hon. Lady for giving way, and I congratulate her on the comments she is making. I also congratulate my right hon. Friend the Member for Elmet and Rothwell (Alec Shelbrooke) for securing today’s debate and for speaking in such a powerful manner.
The hon. Lady speaks from personal experience, and she talks about working in this place and working with an employer who is undoubtedly sympathetic and supportive. To help the Minister address the problems raised in this debate, could she explain what her employer did that made a difference, and what can the Department do to address the problem?
I thank the hon. Member for his very well-timed intervention; I was just about to get to that. I was very fortunate in that my employer, my right hon. Friend the Member for Hackney North and Stoke Newington (Ms Abbott), did not even wait for me to request flexible working measures. She thrust them upon me.
I had to go to hospital at one point, and when I explained to my right hon. Friend that they were looking towards an endometriosis diagnosis, she began reading up on it. She sent me links almost every day. She understood, and she allowed me to come into work later, because I was having quite bad evenings. She would shout at me if I was doing too much—the only time she would shout at me, just to let Members know. She gave me an entire month off after my botched laparoscopy, after which she threatened to go to the hospital and tell the doctors about themselves. We are not necessarily asking for people to be that extreme in making flexible working arrangements and allowances for their employees, but there are instances where people can be very good.
After becoming a Member of Parliament, I spoke to our accommodation Whip, my right hon. Friend the Member for Alyn and Deeside (Mark Tami). At first, I was told that the way to get a better, more suitable office was to be very nice to him. I spent my time complimenting his ties, and I eventually explained to him what my issue was—not in much detail, but he understood immediately. He did not ask too many questions. He gave me the type of office I needed—one that made it easier for me to get around Parliament. Those are examples of things that employers can do to support women with endometriosis.
We need to urgently bring down waiting times, because going through this can be very difficult. It is not just about waiting times for a diagnosis. It is about follow-up. It is all well and good to diagnose a woman with endometriosis, but if it is not followed up with further treatment after a laparoscopy, it continues. Endometriosis does grow back. Those living with endometriosis need, once they are diagnosed, to be able to understand what they are experiencing and to be able to talk to their employers about their condition, and employers need to take the time to be informed about the condition. But it does not end there. We know that there is no cure for endometriosis, and that treatment at the moment may only be able to ease the pain.
It is a pleasure to serve under your chairmanship, Mr Davies. I thank the right hon. Member for Elmet and Rothwell (Alec Shelbrooke) for securing this important debate, and for his work as an advocate on this important issue.
I have previously spoken about the importance of better supporting everyone living with endometriosis. As a member of the Petitions Committee, I was proud to speak up last year when more than 100,000 people signed a petition calling for endometriosis to be prioritised after years of being overlooked. I have said it before, and I must say it again: endometriosis is a mainstream healthcare issue that we cannot afford to sideline. That, of course, means that it is a workplace issue as well. More than 3 million people live with either endometriosis or PCOS in the UK, and we cannot afford to neglect or ignore them.
Before being elected to Parliament, I worked in the NHS as a pharmacist. I met patients living with endometriosis and saw the pain and difficulty that they face in their day-to-day lives—we have heard many examples of that today. They face chronic pain, difficulties with breathing and, in the worst cases, hospitalisation. As we have heard, endometriosis is a disease that we cannot afford to take lightly, which is why it is so important that everyone living with endometriosis is supported in the workplace with the job security, adjustments, flexibility and protection that they rightly deserve. I know that my party has been very clear about how we would help to achieve that.
A Labour Government would proudly stand alongside our trade unions as they push for better workplace practices and take on rogue employers. A Labour Government would fight for flexible working, with the option for workers to work remotely from home. A Labour Government would end the fire-and-rehire con so that insecure and low-paid work is a thing of the past, and they would campaign to ensure that all workers have full employment protection from day one. That would go some way towards giving everyone with endometriosis the workplace security that they rightly deserve.
Last but not least, I call Jim Shannon. Please try to end at 3.28 pm.
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“Endometriosis is a systemic, inflammatory disease characterized by the presence of endometrial-like tissue found outside the uterus. Endometriosis has significantly negative impact on the physical, emotional, reproductive, and sexual health, financial security, relationships, careers and schooling of those affected. Commonly located in the abdominopelvic region, the disease has also been found in virtually every organ system including the lungs. Mistakenly referred to by some as simply ‘painful periods,’ symptoms are not limited to menstruation and often become chronic over time. It is also entirely possible for those who do not menstruate e.g., adolescents, post-hysterectomy, post-menopause to struggle with endometriosis. This extraordinarily complex illness has body-wide impact, with sustained inflammation, angiogenesis, adhesions, fibrosis, scarring, and local and neuronal infiltration leading to a multitude of systemic issues. Chronic pain, anatomic distortion, adhesions, organ dysfunction, non-menstrual abdominal and pelvic pain, infertility and pregnancy loss, painful sex, bowel and bladder pain and dysfunction, lower back and leg pain, severe bloating, crippling fatigue, debilitating period pain among those who menstruate, even lung collapse and much more are hallmark of endometriosis. Despite the preponderance of systemic symptoms and effects, however, many patient complaints are unfortunately trivialized or outright dismissed at the healthcare level. The disease is also rarely present alone and is commonly associated with multiple comorbidities and secondary pain drivers including various gynepathologies; chronic fatigue; coronary heart disease; rheumatoid arthritis; adverse obstetrical outcomes like loss, preterm birth, spontaneous hemoperitoneum in pregnancy, obstetric bleeding, pregnancy-induced hypertension, preeclampsia and more; painful bladder syndrome; and even an increased risk of certain cancers. Often called a ‘disease of theories,’ definitive causes have been under debate for over a century, yet no single theory yet explains endometriosis in all affected. Most likely, a composite of several mechanisms is involved.”
With millions of sufferers and long-standing recognition of the disease, it is shocking that women suffer such enormous discrimination in the workplace for a common disease. To summarise, I will quote from a paper I was sent by Victoria Williams, a researcher at the Open University, from her PhD thesis, “The experience of endometriosis in the workplace and the influence of menstrual policy: leaning to precarious work to manage a ‘precarious condition’”. She says:
“Endometriosis often hinders the ability to work to the same capacity every hour on every day of a traditional working calendar, and as such participants talked of not being able to hold down full time work, leading to multiple part time roles or precarious work situations, drawn by the flexibility they offered. However, the supposed flexibility is often a double bind with lack of stable contracts, loss of state provisioning and the financial impact of having to take time off for surgery (often multiple surgeries). As such, precarious work may be appealing to people with endometriosis because of the promise of flexibility but they may equally feel and be even less protected.”
I want to expand on that by talking about the sufferers of this terrible disease and the effects it has in the workplace.
We have all been ill. Unfortunately, we have all had a rather nasty stomach upset at some point. We may have been at work when we were suddenly taken short and had to nip out to the bathroom. I do not want to get too graphic—we all know what that feels like. I am sure we have all had a very embarrassing incident at some point in our life. Mr Davies, can you imagine experiencing that fear—and, indeed, that incident—every single day in the workplace?
I have been given examples of that particular situation by women who have been at work, in a meeting, when a sudden bowel movement has given them seconds to get out and get to the right place. Yet one person who gave me such an example told me that her employers tutted and said she was unreliable: “She’s always nipping off to the bathroom.” I do not believe that people are mean or bad. I fundamentally believe that most human beings in society want to do the right thing by people, but if people do not know about the situation, ignorance can have some very nasty consequences. We have to start raising a higher level of awareness of this issue.
National Endometriosis Survivors Support has sent me a catalogue of quotations, with more than 60 patients outlining their experiences. I am going to share about 20 of them with hon. Members.
No.1:
“Having endometriosis has made my career a mine field. I cannot progress how I wish to due to time taken off sick. I have been undermined and people have compared my condition to other conditions with complete ignorance:—suggesting that I was exaggerating my symptoms. Working life is not compatible with suffering from endometriosis—it’s too much and no one understands!”
No. 2:
“I was asked what I was going to do to make things better and stop myself being sick. It’s an incurable disease.’
No. 3:
“I’ve almost lost my job due to discrimination because I couldn’t work as fast when I was in crippling pain.”
No. 4:
“Almost lost my job in a major company despite them saying they’d treat endometriosis occasions of absence separately that wasn’t the case. Also wouldn’t let me home when I was covered in blood to change my clothes and made me go purchase new clothes and told me to use work showers.”
No. 5:
“I was in hospital due to my endo a little over a month ago, I couldn’t walk. Had to call in for work, which I rarely do unless I genuinely can’t help it, they asked if I was being admitted because if I wasn’t they wanted me to ‘make up for it’ by working the next day.”
These are real experiences from real people in the workplace. There is lots of evidence out there.
No. 6:
“Due to the fact that I had two laparoscopies, I had a large gap in my employment record. Despite a very good CV, my applications were rejected because employers saw only the employment gap.”
No. 7:
“I haven’t been able to work for 7 years now and it depressing.”
No. 8:
“Was misdiagnosed as IBS for 4 yrs, my boss said I was exaggerating it, refused to let me do flexi time to help. After surgery, I was signed off for an additional week, and when I called to tell her, she swore and slammed the phone down. Ended up severely depressed. I was suicidal. She brushed it off, and kept calling me Menopausal Mandy.”
I have said it before on the Floor of the House and I will say it again: women are dying. They are killing themselves. They are spending day after day in chronic, crippling pain and do not even have the support of a workplace. That level of destruction of women’s lives is killing women, and it has got to stop. We have to get a better understanding of what millions of women are going through in this country.
No. 14:
“I’ve unfortunately been put on redundancy notice. My Endometriosis sickness has been scored against me as well as my productivity not being the same as everyone else. I have an occupational health report stating to reconsider my targets due to me taking codeine to manage the pain. My question is, is Endometriosis classed as a disability? Is this discrimination?”
No. 15:
“At 18 I was sacked from a nursing home due to having too many days off related to endometriosis flare ups.”
No. 16:
“I was recently dismissed from work whilst off sick because I was off so long so now jobless. I’m 35.”
No. 17:
“I’m 28 currently in full time work but due to the lack of knowledge of this awful disease I’m currently under investigation for fitness to do my job. I work in a nursery. This is all due to having sick days (which I don’t get paid for). With more knowledge and research more women wouldn’t have to try and fight with their management to prove they are sick and can still do their job.”
No. 18:
“At age 21 I was dismissed for having too many sick days due to endo. At age 25 my contract was terminated while I was laid in a hospital bed, after emergency surgery due to endo. At age 28 my job was suspended and then terminated due to them not believing the reasons for absence, i.e. Endometriosis, and I was laid in a hospital bed the day I had my hysterectomy when they emailed me to tell me. I’m 29 now.”
No. 19:
“I was forced to resign from my permanent teaching position while I waited for surgery. The new head didn’t believe how ill I was. I’m much better off mentally being self employed, but not financially.”
I emphasise the examples about teaching and the NHS. When we raise such issues, people sometimes think that we are talking about private employers. We may have a vision of the bad boss who says, “Silly woman!” and that sort of thing, but I am actually giving examples from the public sector. I will be bringing forward debates later this year for the Department of Health and Social Care and the Department for Education to respond to, but does not the fact that a teacher was dismissed because the headteacher did not understand endometriosis paint an even more worrying picture—that girls are not being told what a healthy period is, and none of them knows what this disease is? How can someone possibly know that they have a disease if they do not know that that disease exists?
The examples are piling up. I had over 60 examples, which I have whittled down to this list. Here is the final quotation on this point:
“Benefits—DWP are not recognising endo as a disease/pushing you to work. When I have completed a work capability assessment they found me suitable for work, have had to push again for a mandatory reconsideration. This goes for UC & PIP as I am currently going through the process of both.”
However, there were some positives. One person said:
“From age 11 I spent the week off school each time my period arrived. I couldn’t move as the pain was too much and so heavy I was changing pads far too often than would be allowed to leave a class to go to the toilet. The school called me and my mum in for a meeting and I was made to go in or face a disciplinary. Quite a few times I bled through which meant taking spare clothes. As a teenager this was mortifying. Now as an adult (32) I have made my employers and colleagues aware and I’m in a job where I can just nip to the toilet. I am also very lucky to have supportive colleagues that help when I am doubled over.”
Here is another one:
“When I was 14 I was sent home from school for being violently sick. Kept being sick continuously until later that day my time of the month started. I work in a pub and over the last 5 years have collapsed in the bathroom, in the back room. I have to have moments in the back room because I’m in so much pain I can’t stand up. Let alone smile at customers. I’ve been sent home a few times when it becomes clear there is no way it is possible for me to stay there. I have to have extra time to sit down and my boss and I have had to put lifting bans in place or by the end of the night, when I start off OK, I can’t walk and I’m in agony from lifting too much and pulling all the organs around. I often have to sleep for hours the day after to try and recover from my shift as it physically takes it out of me and I find it increasingly hard to push through. Thankfully I have a really supportive team or I wouldn’t be able to support myself to live. But I think back to previous bosses and all I can think is how I wouldn’t be there anymore if I still had any of them. Because they wouldn’t have tolerated and accommodated my health.”
In 2020, the all-party parliamentary group on endometriosis published an inquiry, some of which I will read out. This is about the impact of a supportive employer:
“For the last 9 months I have missed almost a week per month, but my work have been very supportive of this as they know I have been undergoing tests. I am very lucky to have an employer who is so understanding”
Another woman said:
“Only one workplace classified me as having a disability which was extremely helpful on days where I was in pain, my boss was fully informed and would have no issue with me saying to her, I have to head home straight away, and I will be back in 2 days.”
Here is another one:
“I have been very lucky that my work have been wonderful. They make adjustments for me working from home when needed and it’s no problem if I can’t work because I’m in too much pain.”
The report also talked about employee rights and employer obligations. The Equality Act 2010 states that a person is disabled if they have a physical or mental impairment that
“has a substantial and long-term adverse effect on…ability to carry out normal day-to-day activities.”
When endometriosis is debilitating, due to the symptoms experienced and/or the long-term impact of surgery, it meets the Act’s definition of disability, as with other chronic conditions.
Employees with endometriosis who experience debilitating symptoms have the right to ask their employer for reasonable adjustments at work that would enable the individual to continue working or would reduce the disadvantage suffered due to having a disability, in this case a chronic condition. Reasonable adjustments include, though are not limited to, flexible or reduced working hours; reassigning work or duties; time off for medical appointments; and working from home. Employers must consider requests for reasonable adjustments and cover the cost of adjustments agreed. However, we know of cases where women with endometriosis have requested reasonable adjustments, for example, to work a particular shift pattern or reduce working hours, and have had those requests refused.
The pandemic has had a significant impact. The report on endometriosis and working from home says:
“Both the 2020 APPG inquiry and our 2021 Covid Impact Survey found that those with endometriosis who were able to work from home reported it as a positive development, in particular in relation to better managing symptoms, including…Being able to undertake physical pain management techniques more easily…Being able to take breaks/lie down when needed…Not having to commute to work when experiencing painful symptoms.
Some reported a positive impact on mental health due to enabling better symptom management.
Our 2021 Covid Impact Survey found that 69% of those working entirely from home found it positive, as did 51% of those working partly from home.”
Respondents to the 2020 APPG inquiry made comments about the positive impact of working from home:
“Now have option of working from home, so this helps with not having time sick and then missing pay.”
“I am lucky with my work now I am able to work from home if too unwell to travel.”
“I work from home so I got my hours around the times I feel okay. When my symptoms are bad I am often so tired I just have to sleep for most of the day.”
It is not a completely negative story that I am painting today. There are good employers out there and good examples of where employers have been able to work around it. That brings me on to endometriosis-friendly employers. Endometriosis UK has an endometriosis-friendly employer scheme, which supports organisations to make simple adjustments for those with endometriosis to work effectively while managing a chronic condition. Employers sign up to the endometriosis-friendly employer principles and commit to working to implement them. The principles are: leadership and management support; tackling stigma and cultural change; communications to increase awareness of endometriosis; and promoting the support available for employees with the condition.
We can draw quite a lot of comfort from that, but I put to the Minister that we have got to push that out to employers. I am not going to ask the Minister for new legislation, for new Bills to come forward to the House. I believe that there is plenty of law in place, but it is not being properly used. That is more than likely because employers do not know about this terrible, debilitating disease.
As I draw to a conclusion, I would like to highlight the opportunity to link the issue with the menopause taskforce. The Government press release on Friday stated:
“Minister for Women’s Health and co-chair of the UK Menopause Taskforce Maria Caulfield, said: ‘For too long women have gone unsupported and unheard when it comes to specific women’s health issues. This is especially true when it comes to the understanding of and treatment for the menopause’ It was agreed the taskforce will meet every 2 months, and future meetings will be scheduled by theme which will include…healthcare provision…education and awareness…research evidence and data”,
and “menopause in the workplace”. So we are recognising one condition of women in the workplace—the menopause —but not recognising endometriosis. There is no taskforce out there to do that. I know this matter is not the responsibility of the Minister’s Department. It will have to be something that works across Departments in many different ways.
There are still women at a huge disadvantage in the workplace when they try to start a family, especially those with fertility problems. I am grateful to Dr Larisa Corda for passing me information from an organisation called Fertility Matters at Work, who sent me the following statistics: 72% said that their workplace did not have a fertility policy in place; 83% said that covid-19 had made managing fertility treatment while at work easier; 68% said the treatment had a significant impact on their mental and emotional wellbeing; only 1.7% had a fertility policy that met their needs; and 69.5% took sick leave during the treatment.
Although this debate is primarily focused on supporting sufferers of endometriosis, I urge the Minister to look at the range of women’s barriers in the workplace that still exist today—in the 21st century! Our society should surely have moved beyond the glass ceiling. In fact, it is not so much a glass ceiling as bulletproof glass. There are probably weaker windows in President Biden’s Beast. The glass ceiling is almost impenetrable.
Perhaps today’s debate will start to move the issue forward, because we are going to keep the pressure up. I started this debate in October 2019. Then we had a general election and a pandemic, and we have had to start again. Can it be that nothing happened in two years because we were not raising it here, when we had already raised it in a debate in October 2019? It is important that we do not let this issue go.
I have five asks of the Minister today. First, promote the endometriosis-friendly employer scheme. Secondly, work with other Departments to interact with the menopause taskforce and the shocking lack of support for women with fertility problems. Thirdly, get the Department for Work and Pensions to recognise that endometriosis can be a disability. Fourthly, ensure employers fully understand the Equality Act to protect endometriosis sufferers in the workplace. Fifthly, create a scheme to promote endometriosis-friendly employers.
We are only halfway through this Parliament—I know it seems a lot longer. We have plenty of time to do plenty about the issue in this Parliament, and we have to. The time has come to settle this terrible, debilitating strain on women who are owed so much more. This society—never mind what the Government and Parliament do—is letting them down.
Part of the issue is the stigma that still remains, which means that in some circumstances, women cannot feel comfortable taking time off or requesting flexible working conditions in order to work around their symptoms. The right hon. Member for Elmet and Rothwell mentioned fertility; I have spoken openly about my experiences with in vitro fertilisation, and I took sick leave from my employment because I was scared to speak to my employer about what that meant. We were going through a restructure, and I wondered whether if he knew that I was potentially going to have a baby through IVF or would need to take time off, that would jeopardise my chances in the workplace, so I completely understand what so many people are going through. Even more worryingly, I have heard from constituents who have spoken out about the lack of understanding they have received from their employer, from outright dismissal of their condition as simply a woman’s problem to genuine fears over losing their job due to unavoidable absences.
It is not good enough, and I am frustrated because it is clear that education matters. That is the key to supporting people with endometriosis in the workplace, and I am pleased that under a Labour Government in Wales, women’s health, including endometriosis, is taken seriously. Colleagues from across the border may be interested to know that five years ago under a Labour Government, a task and finish group was established to review endometriosis services in Wales, with the aim of improving access to support for women who are affected. When it was published in 2018, that report recommended research in several areas, including the development of an effective symptom awareness tool; evaluation of the follow-up process after surgery; a multidisciplinary approach to symptom management; development of educational resources; and ongoing monitoring of patient outcomes. I am pleased that all of those matters are being taken forward by the Women’s Health Implementation Group and Health and Care Research Wales.
However, we must acknowledge that while progress has been made, we still have room for improvement when it comes to supporting people with endometriosis in the workplace. That is why schemes such as Endometriosis UK’s endometriosis-friendly employer scheme, which encourages organisations to show a commitment to employees who are living with endometriosis, are so important and need Government support. For the 1.5 million people living with endometriosis, workplaces need to be making fair adjustments wherever possible. Given the very valuable contributions that women make to the workplace across so many different sectors, I sincerely hope that the Minister will support this, and outline exactly what the Government are doing to ensure that all those living with endometriosis are able to fulfil their full potential.
“I left my teaching career due to the exhaustion of endometriosis. I loved education so took a position as a teaching assistant which saw a drop in finance of £18,000/year… I feel pressured not to take any other time off and work through pain frequently.”
The right hon. Member for Elmet and Rothwell spoke passionately and graphically about the reality of endometriosis. As a woman who has had such bad periods that I have bled through at school, university and work, I know how embarrassing and devastating it can be, and I have what would be classed as relatively normal periods. Endometriosis sufferers are passing out in their workplaces or in the street. They are not able to get to the toilet or be given basic dignity. We are not in a third-world country, but it feels like that. The treatment of those who suffer from endometriosis feels like they are existing in a third-world country. Endometriosis is on the NHS’s list of the top 20 chronic pain conditions, but we would not know it. The right hon. Gentleman spoke about chronic pain and the support for it, and that is incredibly important.
We are robbing women and those who suffer from endometriosis of the ability to maintain and progress in their careers and to provide for their families, and of financial stability and independence. So often, they experience devastating mental health problems. It should not have taken a global pandemic for us to review how we support flexibility in the workplace, but it has. The irony of the situation is that the waiting times for endometriosis are even worse than before the pandemic, but the pandemic has, in some ways, facilitated a rethink and a reimagining of what flexibility people need and should have at the very basic level, because trying to work or just live with endometriosis is debilitating. The Department for Work and Pensions and the Government of the day must recognise that, and employers and educational institutions need to be supportive and be given the information.
Endo Warriors West Lothian has developed the most incredible educational video for young people in schools, and the group worked with Professor Andrew Horne at the University of Edinburgh to develop and fund it. We want to roll it out across Scotland, the UK and the world, and we want to get content, policies and laws that support endometriosis sufferers to make sure they do not have to live in pain and suffer in the way that many of those who we are speaking up for do. I hope the Minister will listen and not just give lip service today but real tangible action.
We know just how much endometriosis impacts on people at work. It is worth mentioning again the report of the all-party parliamentary group on endometriosis: 55% of people with the condition having to take time off work is not a small thing, and 27% missing out on promotions because of the condition is not a small thing. Those are issues that women in general already face in the workplace. The report also found that 40% of those with the condition worry that they will lose out in their jobs and further studies, and one in six actually have to give up their work—all because we are not taking care when we need to. We need to support those with endometriosis in the workplace, so that it does not affect their career advancement.
When I was thinking about becoming a Member of Parliament, I had to consider whether I actually could, because I was in so much pain. I had to consider whether I would be able to campaign in the way that we are meant to, and do all the things that we are meant to do. That is not fair for any woman. It is hard enough for women in the House in the first place, and for women in many other workplaces right across the country. For someone to have to think about whether they should continue in a job, or go for a job that they would love, simply because of their condition—simply because that condition does not have the level of importance in policy that it deserves—is not fair at all.
There are several steps that the Government could take. They have to start by clarifying whether endometriosis is covered by the Equality Act 2010. We have to be very clear here. The Equality Act states that a person has a disability if they have a “physical or mental impairment” that
“has a substantial and long-term adverse effect on”
their
“ability to carry out normal day-to-day activities.”
If endometriosis prevents an individual from carrying out their day-to-day tasks—and I promise hon. Members that it absolutely does—they should be entitled to the same protection under the Equality Act that those with diabetes currently have. We know that endometriosis affects as many women as diabetes does. Further clarity on that would go a long way to ensuring that those with endometriosis are not discriminated against in the workplace.
I also join campaigners in calling on this Government to adopt an open culture when discussing menstrual health. For far too long, women have been made to feel ashamed or embarrassed when discussing their bodies. For example, when I was at school we had various names for it—people would say their “cousin had come to stay” or that “the red river was flowing,” and people would pass each other sanitary towels under the table. When it comes to our periods, it is all meant to be shame and embarrassment. Further, the Government have to work with the NHS to ensure that people with endometriosis have the right access and support when it comes to time off work.
I know that I am going on longer that I should, but now is a good time to pay tribute to all of the endo warriors: the many different endometriosis organisations and blogs. There are women like me who would not have coped if they had not had all of that information from other women. It should not have to be like that—we are not always medical professionals—but I would not have been able to physically campaign and put myself forward to stand in this House if I had not read all of those things online, most of which were provided by other women. I am so very grateful to them, but the Government really have to step up to the plate.
I would like to touch on the subject of diagnosing endometriosis and treatment, which many Members have spoken about today. Depressingly, it currently takes an average of eight years for somebody to be diagnosed with endometriosis in England. Although the treatment available for endometriosis is incredibly limited, many women battle with the disease for years without a proper diagnosis, often with very limited information provided by their GPs. Therefore, it is essential that, in the meantime, employers better understand the potential impact of endometriosis, even before diagnosis is eventually made. Employees living with endometriosis may need to take sick leave, work remotely or have adjustments made in the workplace before waiting for a diagnosis, and employers have to be able to accommodate that. The situation at present is not sustainable, and more must be done to improve the efficiency and effectiveness of diagnosis and treatment.
We have heard from many hon. Members that the lack of resources dedicated to diagnosis and treatment means that too many people are working with endometriosis in silence, which is completely unacceptable. Only by cutting the waiting time for diagnosis, and by investing in potential future treatments for endometriosis, can we truly change this for so many patients living with the disease. The Government’s overdue women’s health strategy is a perfect opportunity to set out that change, but their vision for the strategy, which was recently published, made no clear promises to alleviate any of the concerns. This is something that I will be watching closely to see how the Government choose to tackle endometriosis. I urge them to take the issue seriously.
Endometriosis in the workplace needs to be at the front and centre of women’s health. It is currently just a footnote, which means that the Government are failing more than 3 million people living with endometriosis. The Government have the opportunity to make a positive change, and I really hope that they do not waste it, because the women’s health strategy will go a very long way in improving the lives of the more than 3 million women who are currently living with endometriosis.