Endometriosis Workplace Support

Patricia Gibson Excerpts
Tuesday 29th October 2019

(4 years, 5 months ago)

Westminster Hall
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Patricia Gibson Portrait Patricia Gibson (North Ayrshire and Arran) (SNP)
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For many people, endometriosis is a condition that they have never heard of, or are certainly not familiar with, yet it has blighted the lives of far too many women. The latest figures suggest that one in 10 women suffer with it. For those women, “suffering” is the correct term to use. In addition, it is associated with being the cause of infertility in 30% to 50% of cases. Shockingly, the average diagnosis time after symptoms first appear is seven and a half years.

Although the condition is not recognised as a disability as such, many women living with it will testify that it can be very disabling and debilitating. At this point, I wish to give a shout out to my constituent, Ann Devlin, who lives in Largs. She has lived with the condition and is what we might call an “endo warrior”, since she has worked tirelessly to raise awareness of the condition and to support other women who live with it. She is energetic, cheerful and resilient in the face of the sometimes great challenges that the condition has placed on her life, but she still inspires, helps and supports others who face similar challenges. I pay tribute to her strength. I know how often the condition has crippled and consumed her, and too many other women. I have huge respect for all that she has done.

I also pay tribute to the work of my husband, Kenneth Gibson MSP, who worked extremely hard to ensure that there was a specialised endometriosis unit to serve women in the west of Scotland to complement the services already provided in units in Aberdeen and Edinburgh. It was simply not fair that my constituents had to travel from North Ayrshire and Arran to Edinburgh for specialist care for this condition, and he has worked hard to secure that change. He has campaigned incessantly for better treatment and greater awareness of the issue, and he was the first to bring the issue of endometriosis to the Floor of the Scottish Parliament in a debate in 2001, and again last year. He is the only Member of the Scottish Parliament to have secured debates on the issue in its 20-year history.

This debate is timely as we seek to address support in the workplace for this condition. Otherwise women find that their contribution to and potential in the workplace and wider economy is lost. Women often lose out on sick pay for the recurring nature of the condition, so that needs to be addressed. It has a huge impact on women’s lives in the world of work as they might require time out for medical treatment and consultations. They suffer pain and fatigue, and the seven and a half years before diagnosis makes it very hard for employers to treat their condition with the seriousness it deserves. We have to keep talking about it. We must keep shining a light on it and raise awareness and understanding. That in itself will do much to ease the burden of women with the condition.

--- Later in debate ---
Justin Tomlinson Portrait Justin Tomlinson
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That is a really helpful suggestion, which we will make sure is fed in.

Patricia Gibson Portrait Patricia Gibson
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I welcome what the Minister said about the DWP looking at how it can raise awareness of the condition for frontline staff. Does he agree that it is important to look at how sick pay works? Given the recurrent nature of the condition, it often has a financial cost to women in days lost to sickness. Will he commit to looking at whether endometriosis can be accommodated?

Justin Tomlinson Portrait Justin Tomlinson
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I will come to that in my speech, so I ask hon. Members to be a little patient. I will cover most of the points raised.

When, of the four Departments, my Department and I were selected to respond to the debate—one of four Ministers could have been selected to respond—my initial reaction was: do I know much about this? I was contacted by a former employee, Kamya Gopal—she is happy for me to name her—who had this condition. When I employed her, we had had a conversation and made some relatively easy changes that involved being sympathetic: she had to go for short-notice GP appointments; we took into account a need for urgent toilet breaks when doing visits, making sure we were not too far away; and we took things on a day-to-day basis. For a reasonable length of time, no changes were needed. Sometimes they were, and we just accepted that, and it worked. The key thing is that it was easy for me to make those changes, and I as an employer benefited, for four years, from a really valuable member of my team. It was a win-win from having the confidence to have that conversation. She made it clear to me—this has come across clearly in hon. Members’ speeches—that it affects everyone differently. For her, it is a family trait, but they all have different symptoms and challenges to overcome. It all comes down to having that conversation.

Linked to that, another impact is the need to use disabled toilets. Kamya has a RADAR key—it is a hidden disability—and recently someone challenged her for using the disabled toilet. She had to explain, which was embarrassing for her and for the lady who challenged her. That is why I pay tribute to the hon. Member for East Lothian (Martin Whitfield), who has been championing Grace’s sign, which is fully supported by my Department, to raise awareness of hidden disabilities and hidden health conditions and avoid those confrontational, embarrassing situations.

It is important that people with health conditions get the support that enables them to stay in work, and productive in work. Such support is wide-ranging and relies on employers being open to discussing health matters with their employees in a respectful and constructive way.

I am on my fifth Secretary of State as a Minister in the DWP, and I have many roundtables with different stakeholders. We were talking about disability employment yesterday, and it was interesting how there has been a shift in focus to ensuring that people do not drop out of work due to disability or a health condition. Collectively we must do much more in that area. I am encouraged that there is increasing awareness and recognition of hidden disabilities, and hidden health conditions in particular. There is still a huge way to go, but there is a willingness in society to do better.

Endometriosis is a serious condition; we have heard about the ways that it can be debilitating. For the estimated one in 10 women in the UK who suffer, the condition can have a huge effect on their daily lives, including their ability to work to their full ability. As the examples quoted by various Members today show, diagnosis is not always straightforward. Problems arise because symptoms can vary significantly, and because diagnosis tends to require invasive procedures. I do not profess to be a health expert, but it is clear that because endometriosis is seen as a taboo, that will impact on the ability to diagnose and provide support. Members have spoken powerfully about how we have to do much more in that area.

The challenging nature of the condition is recognised within the health system, which now has specialist training. NHS England has developed a service specification for severe endometriosis under the specialised commissioning area of complex gynaecology. That is a good step. It is the beginning of the journey and we will have to see what difference it makes, but I am encouraged that it is starting to happen.

Through these measures diagnosis and treatment should improve, but we must also consider the effect on the ability to work. A survey by investment firm Standard Life found that one in six women with endometriosis report having to give up work because of the severity of their symptoms, with almost all—some 87%—reporting that the condition affected their financial position in some way.

Individual women feel the harmful effects, but employers and the economy as a whole lose out. The leading charity, Endometriosis UK, has estimated that the total cost to the economy of the condition is £8.2 billion; the cost from loss of work is a key contributor to that figure. As outlined in the Work Foundation report, such an impact means that the days of dismissing topics such as these as “women’s issues” are long gone. We know that both the health and work landscapes must be more aware of the condition and its symptoms, for the sake of the women who suffer from it and in order to build a healthier and more productive society for all.

One way that people in work are protected is through the Equality Act 2010, which is the principal means through which disabled people are protected from discrimination in Great Britain. Other than for a very few exceptions, the Act recognises a disability by the impact on the person’s life rather than by the condition itself. Importantly, that means that women with endometriosis are protected by the Act if their condition has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities. I recognise the points that have been highlighted about how we need to improve the awareness and the enforcement of the Act, and about wider support. I will come on to some of the work in that area.

Individuals are also protected in law against unfair dismissal. While those legal protections exist, sufferers continue to face barriers to work and barriers in the workplace, as we have heard. More must be done to raise awareness of hidden conditions. Workplace cultures must adapt to spread understanding of the importance of supporting individuals with health conditions and the value of open discussions about health in the workplace.