Endometriosis Workplace Support

Hannah Bardell Excerpts

Wednesday 9th February 2022 Westminster Hall

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

I beg to move,

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:

“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.

[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.

[Alec Shelbrooke]

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.

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.

--- Later in debate ---

[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,

“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.

--- Later in debate ---

[Justin Madders (Ellesmere Port and Neston) (Lab)]

It is a pleasure to see you in the Chair this afternoon, Mr Davies.

I congratulate the right hon. Member for Elmet and Rothwell (Alec Shelbrooke) on securing the debate and on the comprehensive and excellent way in which he introduced the subject. He has done much to highlight the condition, raising awareness in this place and across the country. I echo the tribute paid to the late Member for Southend West, who was a tireless campaigner on endometriosis, having chaired the APPG in 2018.

Every hon. Member who spoke today made an excellent speech, all making similar points and stressing the importance of the issue. My hon. Friend the Member for Pontypridd (Alex Davies-Jones) spoke with great sincerity and passion. She hit the nail on the head about the importance of education on not just this issue, but other women’s health issues. She gave a good example from Wales of how the Welsh Assembly has been working on that.

My hon. Friend the Member for Streatham (Bell Ribeiro-Addy) spoke about her own experiences, as she has on previous occasions. Members who speak from their own experience send an important signal to those suffering out there that they are not alone and that there is help. It was good to hear about the positive experience that she had had with her employer. We should recognise and celebrate it when an employer does the right thing. As Members of Parliament, we should lead the way in ensuring that workplace rights are respected and upheld.

My hon. Friend the Member for Coventry North West (Taiwo Owatemi) was absolutely right: I agree that endometriosis is not only a mainstream health issue, but a workplace issue. I was pleased that she quoted extensively from the Labour party green paper on employment rights, which the Minister may have a copy of any time he wants, should he seek inspiration for the employment Bill, which—as has been mentioned—we are still waiting for.

As Members may know, I have spoken in the past about the challenges that my wife has as a fibromyalgia sufferer, with debilitating physical symptoms, unpredictability and delays in getting diagnosis, and the lack of understanding among the public and employers. For me, there are a great many parallels between the two conditions. However, today we are talking about endometriosis.

We know from BBC research in 2019 that many sufferers reported a negative impact on their work, in particular when their symptoms were debilitating, to the extent that some were unable to work on a regular basis, and had no choice but to give up their job and seek benefits such as the employment and support allowance or personal independence payments, which I will come back to later.

As we have heard, the all-party parliamentary group on endometriosis conducted a much-needed inquiry, which found that more than half of women affected had taken time off work as a direct result of their condition, and more than a third were afraid of losing their job due to their condition or reported reduced income as a result. Those are significant numbers, but of course, we are not just talking about numbers: we are talking about real people’s lives and the concerns and anxieties they face on a daily basis.

One respondent to the inquiry said:

“It’s been terrifying worrying about losing my only income. I’ve barely managed to keep my job, but I’ve lost opportunities as a consequence and it’s held my career back. I’ve been too unwell to do any training. Being so unwell has cost me lots financially.”

Another said:

“I feel pressured not to take any other time off and work through pain frequently. It has a negative impact on my mental health and general well-being.”

I am sure Members will agree that those examples, and the many others we have heard about today, are simply unacceptable. People should not be put in the invidious position of having to decide between their work and their health. Much more needs to be done to ensure that workplace support is available for all.

[Hannah Bardell]

Just on the point about workplace support, one of the things that I did not get a chance to mention is that there are some great examples out there. BBC Scotland has become an endo-friendly workplace, and Fiona Stalker, the journalist and presenter, has done a huge amount of work on this. She is herself a supporter, and she gave evidence to our Scottish evidence session and spoke passionately about the work she was doing. It is important that we recognise that there are some good examples out there, and that those employers can share their experience and what they are doing with others across the UK.

[Justin Madders]

I thank the hon. Member for her intervention: she did very well to get in that important reference to the good work that is happening up in Scotland. The relevant Government Departments can take a lead from examples such as those.

People have told us that employers lack understanding about this condition. They sometimes do not realise that it is an ongoing condition that requires ongoing treatment and multiple surgeries and, of course, involves debilitating pain. We really should not have to highlight those facts when we are talking about a recognised medical condition that affects 1.5 million people and certainly meets the definition of a disability under the Equality Act 2010. We need to make it easier for employers to feel comfortable talking about this condition with their staff, who will then in turn hopefully feel more supported in opening dialogue. Endometriosis UK provides much-needed support for employers in the form of information and guidance, but it is frustrating that workplace guidance from the Government themselves is still lacking. Given that we have an average diagnosis time of eight years, we could be doing so much more to tackle this problem.

Endometriosis meets the Equality Act’s definition of a disability and, therefore, the reasonable adjustments requirement. There are many ways that that requirement can be met, including through flexible working, reduced hours, reassigned work or duties, and time off for medical appointments. All those things can be done by most employers, but as we have heard, that does not always happen. That is why there is a call for endometriosis to be specifically referred to in the Equality Act as an example of a fluctuating and recurring condition that falls under the definition of a disability. When the Minister responds, I would be grateful if he could indicate whether that is something the Government intend to pursue.

As was mentioned earlier, there are areas in which statutory sick pay can be improved for sufferers of this condition. Outside the pandemic, SSP only applies after four days of sick leave, so somebody needing only two or three days of sick leave would not qualify. Of course, it is also the case that periods of the same cause of sick leave must be eight weeks apart or fewer to count as linked, which can exclude those with fluctuating endometriosis symptoms. It has also been noted that SSP is only available to an employee for a period of sickness for a maximum of three years, which, again, penalises people with chronic long-term conditions such as this. As we have said many times over the past few years, there are millions of people—in particular, many women in low-paid work—who do not qualify for SSP at all. More than two years ago, in the last debate, there was a commitment to engage fully with the APPG’s review, and a promise to improve how we handle benefits. Can the Minister update us on whether there has been any movement in that area, and what plans there are to review SSP for fluctuating conditions such as this?

On access to benefits, which I touched on earlier, respondents to the APPG inquiry reported being assessed by someone who did not understand the condition. Several respondents reported being told by DWP staff or contractors that endometriosis was not even considered a disability, which demonstrates a complete lack of understanding, as well as showing that endometriosis needs some strengthening of protection under the Equality Act 2010.

Those with endometriosis should not be told that they do not qualify for any support and have to appeal many times to get the support they are eligible for. One respondent, who had to go to tribunal to claim PIP, described the situation as “stressful and upsetting”. I am sure we all have constituents who have had to go through that rigmarole many times. Although I know it is not his Department, I wonder whether the Minister can tell us anything about how disability employment advisers are being supported to ensure that the right recognition is given.

As we have touched on already, some employers have not waited for the Government to bring forward guidance and have shown leadership and support by bringing in their own endometriosis-friendly employer schemes, which aim to provide support to organisations to make simple adjustments to help those with endometriosis to work effectively. It is very encouraging to hear that more than 80 employers have joined the scheme so far. They represent a wide range of organisations from financial services companies to medical technology companies, to police forces and NHS organisations.

We want all employers to provide their employees with the right support. There should be no excuse for any Department, or Parliament, not to be part of that scheme. I hope the Minister can tell us whether there have been any attempts to get a standard across the entire public sector. We have had a good debate today, but it is clear that we need to do more to encourage women to feel supported and to deal with this condition in the workplace.

[The Parliamentary Under-Secretary of State for Business, Energy and Industrial Strategy (Paul Scully)]

It is a pleasure to serve under your chairmanship, Mr Davies. I congratulate my right hon. Friend the Member for Elmet and Rothwell (Alec Shelbrooke) not only on securing this debate, but on his bravura performance in setting out the case. He gave examples that were difficult to listen to, to help us to understand what women are going through on a day-to-day basis.

I thank hon. Members who have taken part in the debate for their thoughtful and insightful comments. I would just pick out two contributions: the personal experience of the hon. Member for Streatham (Bell Ribeiro-Addy) and the example of his wife that the hon. Member for Strangford (Jim Shannon) shared. I thank them both for sharing those examples and what we can learn from them.

A number of Government Departments could have led the response to the debate, because endometriosis sits within a range of wider Government initiatives and strategies. The Department of Health and Social Care is developing the women’s health strategy. The Department for Work and Pensions and DHSC are following through on the “Health is everyone’s business” consultation response. The Government Equalities Office carries out wider work on equalities, and there is of course my Department’s work on labour market questions, such as how to make flexible working the default.

We each talk to businesses and employers on a range of issues. I am pleased to reflect the words of the “Women’s Health—Let’s talk about it” call for evidence. The more we talk about women’s health, the more we tackle the stigma and the taboos. Before I became a Minister, I was a vice-chairman of the all-party parliamentary group on women’s health. I am really pleased that this issue is being debated today and that we keep on addressing it and tackling the stigma.

In the interests of time, I will not describe the condition of endometriosis again, but we know that it is a condition that can be especially debilitating for many people. There are some factors, such as time to diagnose, which can exacerbate the situation. Endometriosis has a debilitating impact on a significant number of women across the UK. A respondent to the call for evidence said:

“I have had my endometriosis over looked and just told it was period pain and to deal with it. ‘It’s part of being a woman.’…‘my period is normal and I am exaggerating my pain, it’s all in my head’.”.

That is just plain wrong. No one’s pain and discomfort should be dismissed out of hand and nobody should be told: “It’s just part of being a woman”. We have got to do better.

To understand how best to support people with endometriosis in the workplace, we need to look across the whole system—at educating society at large, at the health sector and at the role of employers, as well as individuals. Only in that way can we start doing the right things for women’s health.

We know that damaging taboos and stigmas remain around many areas of women’s health. They can prevent women from starting conversations in the first place about their health or seeking support for a health issue. When women do speak about their health, too often they are not listened to.

The Government are determined to tackle these issues, which is why we are embarking on the first women’s health strategy. Last year, on 23 December, the Government published “Our Vision for the Women’s Health Strategy for England”, alongside the results of the “Women’s Health—Let’s talk about it” survey. A number of priority areas for action came through that. On women’s voices, more than four out of five women feel, or are perceived to feel, comfortable talking to healthcare professionals about general physical health concerns. That falls to less than three in five women when discussing mental health conditions.

On information and education, as we have heard, my right hon. Friend the Member for Elmet and Rothwell talked about teachers in schools. If we cannot get it right there, how will we get it right further down the line? Our ambition is for women to have access to high-quality information and education, starting from childhood and continuing right the way through to adulthood, to empower women to make informed decisions.

On access to services, just two in five respondents said that they, or the woman that they had in mind, can conveniently access the services they need in terms of location, and around one in four said the same in terms of timing. On health in the workplace, around one in three respondents said women feel comfortable talking about health issues in their workplace, and one in two said that their current or previous workplace had been supportive with regard to health issues. That clearly leaves a massive gap, which is why we need to go further.

[Hannah Bardell]

Will the Minister give us an indication of when that women’s health strategy will be implemented, because I know there has been a delay? Will he also make sure that it addresses the profound issues in terms of employment and the DWP? Those matters are not devolved to Scotland, but are still reserved to Westminster, and we will look closely and will want to work with him on those issues.

[Paul Scully]

I appreciate that, and I will discuss the strategy going forward. Health in the workplace will be a priority area for that strategy. We want to support women and ensure that they feel supported in the workplace, that taboos are broken down through open conversation, and that employers feel well equipped to support women in managing their health in the workplace.

In addition, “Menstrual health and gynaecological conditions” will also be a chapter in the final strategy. It will explore ways to improve awareness and the care and treatment of those suffering with severe symptoms from conditions such as heavy menstrual bleeding, endometriosis, and PCOS. The strategy will set an ambitious and positive new agenda to improve the health and wellbeing of women across England, and it will be published later this year.

We are working to put flesh on the bones of the six priority areas. That will need to be marked by effective co-operation and collaboration across Whitehall. As an illustration of that collaboration and co-operation, the Government also have an active agenda on work and health more widely. We want employers and employees in the round, male and female, to have better interactions on work and health to improve employee retention. It is so important to address these issues from both sides of the lens.

I heard what Members said about the gender pay gap, and we could easily make a business case. Employers invest time and resource in training and developing people’s experiences, so why on earth would they then want to lose someone with a long-term debilitating disease and have to start the entire process again? They should do the right thing.

The Government’s response to the “Health is everyone’s business” consultation was published in July last year. It sets out some of the measures that we will take to protect and maintain the progress made to reduce ill-health-related job losses, and will see 1 million more disabled people in work from 2017 to 2027. The consultation was not specifically on endometriosis, because it did not specify any health conditions. It looked at system-level measures to support employers and employees to manage any health condition or disability in the workplace. We are looking at providing greater clarity around employer and employee rights and responsibilities, with a national digital information and advice service.

We are working with HSE to develop a set of clear and simple principles that employers would be expected to apply. We are increasing access to occupational health, especially for small and medium-sized enterprises that we know are currently underserved. Although the measures are not endometriosis-specific, they are key steps in our effort to change the workplace culture around health and sickness. The Department for Business, Energy and Industrial Strategy looks at labour market regulation. We are responsible for a policy that has been mentioned and which we know can be helpful for those who suffer from endometriosis: flexible working. I must correct the hon. Member for Livingston (Hannah Bardell). Flexible working did come out of the pandemic; it started under the previous Prime Minister, my right hon. Friend the Member for Maidenhead (Mrs May). We have been able to reset our understanding of flexible working in the light of the pandemic.

A respondent to the women’s health strategy call for evidence said:

“Working from home has helped me hugely, as it gives me flexibility to work in ways that are more comfortable for my body. I can work from my bed on a bad day, or have a hot water bottle on my stomach when I have cramps.”

We are taking forward the manifesto commitment to consult on making flexible working the default, unless employers have good reasons not to do so. That consultation contained measures that would increase the availability and the support of the uptake of flexible working arrangements, including whether to extend the right to request flexible working from the first day of employment. By making it easier for everybody to access flexible working, we hope to help those who may need it most, including women suffering from endometriosis.

That consultation closed on 1 December, having received more than 1,600 responses. We are going through those now and will come back in due course. That consultation also introduced plans for a future call for evidence on the subject of ad hoc flexible working, where we want to explore how non-contractual flexibility works in practice. I discussed that with the flexible working taskforce on Monday. We will ensure that the role of ad hoc flexible working, in supporting women with health conditions, is part of its considerations.

My right hon. Friend the Member for Elmet and Rothwell had five questions. We absolutely welcome the work of Endometriosis UK, in particular the employers’ scheme, which we are pleased to see has a high number of participants. Debates such as this will help to fuel more businesses, of all sizes, to join that scheme and share those practices. All that work clearly needs to come under the remit of the women’s health ambassador. I am looking forward to working with that person once appointed.

My right hon. Friend asked about the definition of disability and whether it is included. We have heard the definition: a person is considered disabled 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.”

We have heard examples where that is absolutely the case.

On benefits and how the definition is approached in practice, the work capability assessment determines eligibility for employment and support allowance, and the additional health-related amounts of universal credit. That will indeed be taken into account. It is difficult to have a number of discrete schemes for employers from Government. None the less, big HR departments can take on these things. What we must do is explain to smaller businesses the benefits of tackling these areas.

To conclude, I want to ensure that, through the women’s health strategy, we can get the culture on work and health right. To ensure that the package is as effective as it can be, we need to continue to collaborate. I am looking forward to working with the women’s health ambassador, and I am determined that BEIS should play a full role in driving this agenda forward. I close by thanking everybody for their excellent contributions in this helpful and informative debate.