Endometriosis Workplace Support

Justin Madders Excerpts

Wednesday 9th February 2022 Westminster Hall

[Justin Madders (Ellesmere Port and Neston) (Lab)]

It is a pleasure to see you in the Chair this afternoon, Mr Davies.

I congratulate the right hon. Member for Elmet and Rothwell (Alec Shelbrooke) on securing the debate and on the comprehensive and excellent way in which he introduced the subject. He has done much to highlight the condition, raising awareness in this place and across the country. I echo the tribute paid to the late Member for Southend West, who was a tireless campaigner on endometriosis, having chaired the APPG in 2018.

Every hon. Member who spoke today made an excellent speech, all making similar points and stressing the importance of the issue. My hon. Friend the Member for Pontypridd (Alex Davies-Jones) spoke with great sincerity and passion. She hit the nail on the head about the importance of education on not just this issue, but other women’s health issues. She gave a good example from Wales of how the Welsh Assembly has been working on that.

My hon. Friend the Member for Streatham (Bell Ribeiro-Addy) spoke about her own experiences, as she has on previous occasions. Members who speak from their own experience send an important signal to those suffering out there that they are not alone and that there is help. It was good to hear about the positive experience that she had had with her employer. We should recognise and celebrate it when an employer does the right thing. As Members of Parliament, we should lead the way in ensuring that workplace rights are respected and upheld.

My hon. Friend the Member for Coventry North West (Taiwo Owatemi) was absolutely right: I agree that endometriosis is not only a mainstream health issue, but a workplace issue. I was pleased that she quoted extensively from the Labour party green paper on employment rights, which the Minister may have a copy of any time he wants, should he seek inspiration for the employment Bill, which—as has been mentioned—we are still waiting for.

As Members may know, I have spoken in the past about the challenges that my wife has as a fibromyalgia sufferer, with debilitating physical symptoms, unpredictability and delays in getting diagnosis, and the lack of understanding among the public and employers. For me, there are a great many parallels between the two conditions. However, today we are talking about endometriosis.

We know from BBC research in 2019 that many sufferers reported a negative impact on their work, in particular when their symptoms were debilitating, to the extent that some were unable to work on a regular basis, and had no choice but to give up their job and seek benefits such as the employment and support allowance or personal independence payments, which I will come back to later.

As we have heard, the all-party parliamentary group on endometriosis conducted a much-needed inquiry, which found that more than half of women affected had taken time off work as a direct result of their condition, and more than a third were afraid of losing their job due to their condition or reported reduced income as a result. Those are significant numbers, but of course, we are not just talking about numbers: we are talking about real people’s lives and the concerns and anxieties they face on a daily basis.

One respondent to the inquiry said:

“It’s been terrifying worrying about losing my only income. I’ve barely managed to keep my job, but I’ve lost opportunities as a consequence and it’s held my career back. I’ve been too unwell to do any training. Being so unwell has cost me lots financially.”

Another said:

“I feel pressured not to take any other time off and work through pain frequently. It has a negative impact on my mental health and general well-being.”

I am sure Members will agree that those examples, and the many others we have heard about today, are simply unacceptable. People should not be put in the invidious position of having to decide between their work and their health. Much more needs to be done to ensure that workplace support is available for all.

[Hannah Bardell]

Just on the point about workplace support, one of the things that I did not get a chance to mention is that there are some great examples out there. BBC Scotland has become an endo-friendly workplace, and Fiona Stalker, the journalist and presenter, has done a huge amount of work on this. She is herself a supporter, and she gave evidence to our Scottish evidence session and spoke passionately about the work she was doing. It is important that we recognise that there are some good examples out there, and that those employers can share their experience and what they are doing with others across the UK.

[Justin Madders]

I thank the hon. Member for her intervention: she did very well to get in that important reference to the good work that is happening up in Scotland. The relevant Government Departments can take a lead from examples such as those.

People have told us that employers lack understanding about this condition. They sometimes do not realise that it is an ongoing condition that requires ongoing treatment and multiple surgeries and, of course, involves debilitating pain. We really should not have to highlight those facts when we are talking about a recognised medical condition that affects 1.5 million people and certainly meets the definition of a disability under the Equality Act 2010. We need to make it easier for employers to feel comfortable talking about this condition with their staff, who will then in turn hopefully feel more supported in opening dialogue. Endometriosis UK provides much-needed support for employers in the form of information and guidance, but it is frustrating that workplace guidance from the Government themselves is still lacking. Given that we have an average diagnosis time of eight years, we could be doing so much more to tackle this problem.

Endometriosis meets the Equality Act’s definition of a disability and, therefore, the reasonable adjustments requirement. There are many ways that that requirement can be met, including through flexible working, reduced hours, reassigned work or duties, and time off for medical appointments. All those things can be done by most employers, but as we have heard, that does not always happen. That is why there is a call for endometriosis to be specifically referred to in the Equality Act as an example of a fluctuating and recurring condition that falls under the definition of a disability. When the Minister responds, I would be grateful if he could indicate whether that is something the Government intend to pursue.

As was mentioned earlier, there are areas in which statutory sick pay can be improved for sufferers of this condition. Outside the pandemic, SSP only applies after four days of sick leave, so somebody needing only two or three days of sick leave would not qualify. Of course, it is also the case that periods of the same cause of sick leave must be eight weeks apart or fewer to count as linked, which can exclude those with fluctuating endometriosis symptoms. It has also been noted that SSP is only available to an employee for a period of sickness for a maximum of three years, which, again, penalises people with chronic long-term conditions such as this. As we have said many times over the past few years, there are millions of people—in particular, many women in low-paid work—who do not qualify for SSP at all. More than two years ago, in the last debate, there was a commitment to engage fully with the APPG’s review, and a promise to improve how we handle benefits. Can the Minister update us on whether there has been any movement in that area, and what plans there are to review SSP for fluctuating conditions such as this?

On access to benefits, which I touched on earlier, respondents to the APPG inquiry reported being assessed by someone who did not understand the condition. Several respondents reported being told by DWP staff or contractors that endometriosis was not even considered a disability, which demonstrates a complete lack of understanding, as well as showing that endometriosis needs some strengthening of protection under the Equality Act 2010.

Those with endometriosis should not be told that they do not qualify for any support and have to appeal many times to get the support they are eligible for. One respondent, who had to go to tribunal to claim PIP, described the situation as “stressful and upsetting”. I am sure we all have constituents who have had to go through that rigmarole many times. Although I know it is not his Department, I wonder whether the Minister can tell us anything about how disability employment advisers are being supported to ensure that the right recognition is given.

As we have touched on already, some employers have not waited for the Government to bring forward guidance and have shown leadership and support by bringing in their own endometriosis-friendly employer schemes, which aim to provide support to organisations to make simple adjustments to help those with endometriosis to work effectively. It is very encouraging to hear that more than 80 employers have joined the scheme so far. They represent a wide range of organisations from financial services companies to medical technology companies, to police forces and NHS organisations.

We want all employers to provide their employees with the right support. There should be no excuse for any Department, or Parliament, not to be part of that scheme. I hope the Minister can tell us whether there have been any attempts to get a standard across the entire public sector. We have had a good debate today, but it is clear that we need to do more to encourage women to feel supported and to deal with this condition in the workplace.