Endometriosis Workplace Support

Geraint Davies 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.

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[Geraint Davies (in the Chair)]

We have five speakers and half an hour before the wind-up speeches, so that is about six minutes each. I call Alex Davies-Jones.

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[Taiwo Owatemi (Coventry North West) (Lab)]

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.

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.

[Geraint Davies (in the Chair)]

Last but not least, I call Jim Shannon. Please try to end at 3.28 pm.

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[Geraint Davies (in the Chair)]

Now, for the wind-up speeches, I call Marion Fellows. Can hon. Members try to keep it to 10 minutes?