Endometriosis Workplace Support

Alec Shelbrooke Excerpts

Wednesday 9th February 2022 Westminster Hall

[Geraint Davies (in the Chair)]

Before we begin, I remind hon. Members to observe social distancing and wear masks.

[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 ---

[Alec Shelbrooke]

I thank you, Mr Davies, and all hon. Members who have taken part in today’s debate. I thank the Minister for the many positive comments he has made. There is much legislation and work coming forward that we will need to assess.

I will take this opportunity to correct the record. My figures at the start were out of date for some reason. I said that it would 20 days at 24 hours a day to count the number of sufferers with endometriosis. That was based on 1.5 million women; it is actually 3 million women, so that is 40 days. As we go into the season of Lent, perhaps people could reflect, on every day in Lent, on just how many names they might be able to list in the time they are awake during those 24 hours each day.

Question put and agreed to.

Resolved,

That this House has considered the matter of supporting people with endometriosis in the workplace.