Endometriosis and Polycystic Ovary Syndrome

Emma Hardy Excerpts

Monday 1st November 2021 Westminster Hall

[Emma Hardy (Kingston upon Hull West and Hessle) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Mundell. I would like to add my thoughts and recollections of working with Sir David. As he was chair of the all-party parliamentary group on endometriosis and I was vice-chair, we worked very closely together, and I really enjoyed working with him. I found him to be a funny, engaging and generous man. He will be very missed.

As much as I am pleased to be sharing the new role of chair with the hon. Member for Livingston (Hannah Bardell), I do not think that any member of the group will quite get over the loss of Sir David. The last conversation that we had was when we caught each other near the lifts in 1 Parliament Street, if Members know it. He said, “Oh, Emma, Emma! Let’s find out who the new Minister is. We must get them to come to our APPG.”—this was during the reshuffle—“We must tell them about our report. Let’s do this together.” I said, “Brilliant!” He said, “I’ll find out. I’ll get hold of them,” and I said, “That’s great news.” I am very pleased to say that before the debate began, the Minister agreed to meet the APPG, so I thank her for that.

I would like to mention our APPG and the work we did—I can see members of the group here now—and some of the points that we came up with. It was a really detailed piece of work. We listened to thousands of women. Sir David chaired some of the events, as did I and other Members. We were both passionate about following up on the report’s recommendations. The point he made to me was, “It must not be left to gather dust, Emma,” and I said, “No, it must not be left to gather dust,” so we will push on with the recommendations.

One of the things we talked about was highlighting the unacceptable delays in diagnosis and the need for research into diagnostic methods. One of the recommendations was that Government should commission research to discover the cause of the disease. No one really understands why some women have it and some do not, and there is no research on that. Research needs to be done on better treatment and management options, and—the dream for everyone—one day finding a cure.

We need increased awareness. It feels as though we are becoming more aware of the condition, but I still find myself having conversations with people who ask, “How do you say that? What is endometriosis? I have not heard of that before.” We should do anything we can to raise awareness and increase understanding among health professionals of the severity of the condition.

We need to recognise endometriosis in statutory support as a source of chronic disability, and we have talked before about having a debate about that. Sir David and I, along with other members of the group, wrote to the Minister in the Department for Work and Pensions about personal independence payments, disability benefits and women’s difficulty in accessing them for conditions such as endometriosis. The definition and criteria for statutory sick pay do not recognise long-term conditions such as endometriosis. Everybody who needs it should have access to the appropriate care.

I would like to mention the women that I met during my recent Big Conversation event. I pay tribute to Mr Phillips, who is an incredible consultant and an expert in endometriosis, for all the work he does in my local area. The women at the event reported the same things as we have heard from the women here: this is a condition that takes seven and a half years to diagnose, it is not taken seriously and they are left in extreme pain for long periods of time. However, I want to offer some hope to everybody. I am really pleased that Dr Barbara Guinn and Leah Cooksey, a PhD student at the University of Hull, have just been given £10,000—a pitifully small amount, one could argue—to look into researching biomarkers for endometriosis. That would be revolutionary if it came through. The idea is that someone could give a urine sample to identify the biomarkers that mean they are likely to have the disease, without the need for the current invasive medical procedures.

My final, specific ask for the Government concerns the Health and Care Bill. The Royal College of Obstetricians and Gynaecologists is asking that it be made mandatory for integrated care systems to ensure that NHS organisations for which they are responsible conduct and resource clinical research. Can measures about mandatory research into this condition be included in the new Health and Care Bill? I am very sorry that Sir David is not here with us, but we will continue to push for all the recommendations and points that he stood for so proudly in our all-party group.