Endometriosis Workplace Support

Hannah Bardell Excerpts

Tuesday 29th October 2019 Westminster Hall

[Alec Shelbrooke]

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

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

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

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

Another woman said:

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

Someone else said:

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

A young woman said:

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

Another story comes from a woman who said:

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

[Hannah Bardell (Livingston) (SNP)]

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

[Alec Shelbrooke]

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

Another sufferer said to me:

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

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

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

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

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

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

Another lady said to me:

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

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

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

Another lady said:

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

--- Later in debate ---

[Hannah Bardell (Livingston) (SNP)]

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

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

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

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

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

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

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

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

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

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

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

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

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

Emma got in touch with me to say:

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

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

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

That goes to the heart of the issue.

Shirley said that she

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

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

--- Later in debate ---

[Justin Tomlinson]

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

[Hannah Bardell]

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

[Justin Tomlinson]

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

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

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

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

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

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

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

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

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

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

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

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

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