Westminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
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The Minister for Disabled People, Health and Work (Justin Tomlinson)
Thank you, Mr Pritchard. It is a real pleasure to serve under your chairmanship once again for this important debate. I congratulate my right hon. Friend the Member for Elmet and Rothwell (Alec Shelbrooke) on securing this debate, which provides an opportunity to discuss this hugely important and overlooked condition.
It is clear that there is overwhelming cross-party agreement, with little to disagree with in the sentiment expressed. I am incredibly impressed with the references to digital engagement and with how most hon. Members who spoke have been personally contacted or have personal experience of the impacts. It was clear to see genuine emotion from people watching the debate, and that is because this genuinely matters.
It has been highlighted that this issue cuts across many Departments. I represent the Department for Work and Pensions, but there is clearly a big role for the Department for Business, Energy and Industrial Strategy in how employers are acting, for the Department of Health and Social Care on awareness and how long it takes to get the correct diagnosis, and for the Department for Education in raising awareness at a younger age, although it does seem that there are positive steps. To ensure that nothing falls between the cracks, my Department recently moved the Office for Disability Issues to the Cabinet Office. We are still responsible, but it is based in the Cabinet Office so that on cross-cutting issues such as this it can be the eyes and ears, making sure that there is a joined-up approach.
I absolutely give a full commitment, on behalf of the DWP, that we will engage fully with the APPG review, to identify areas where we can improve awareness with our frontline staff, and improve how we handle benefits, support and everything that we can possibly do. We will also do everything we can to encourage the other three Departments, which I have no doubt will be just as willing to be proactive in this area. With the APPG’s helpful, constructive, proactive review, using the wealth of experience that is out there, hopefully together we can make a big difference.
Jim Shannon
We clearly welcome what the Minister just said, but as the shadow Minister said, surely there needs to be an understanding in the DWP of what endometriosis is and what its symptoms are, so that that is reflected when considering someone’s benefits. As elected representatives, we sometimes find that that is not the case. How will the Minister ensure that the Department and officials can make that change?
Justin Tomlinson
That is what I am articulating. We want to know that all our frontline staff and systems are taking that on. People are raising concerns that may not necessarily be directly linked to the DWP, although they may be. That is why I want to commit as much as I can to support the review, because if there are areas in which we can improve, we should and will improve in them. There is a genuine commitment.
Louise Haigh
The point about taboos has been raised by many people, and the fact that this condition is so under-researched and given so little airtime because it relates specifically and only to women. I bring the Minister’s attention to the #periodpositive pledge, developed by my constituent Chella Quint, which campaigns against menstrual taboos and asks particularly for all official documentation to explicitly use the terms “menstrual issues” or “menstrual health issues” rather than euphemisms such as feminine and sanitary hygiene.
Justin Tomlinson
That is a really helpful suggestion, which we will make sure is fed in.
Patricia Gibson
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
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.
Alec Shelbrooke
Can my hon. Friend pick up on the specific point that was raised about HMRC by myself and the hon. Member for Livingston (Hannah Bardell)? I absolutely agree with what he is saying, but it seems like an easy starting point to address that point with a Government Department.
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.