Endometriosis and Polycystic Ovary Syndrome

Alex Norris Excerpts

Monday 1st November 2021 Westminster Hall

[Alex Norris (Nottingham North) (Lab/Co-op)]

Mr Mundell, you talked about doing justice to Sir David’s memory. Like possibly everybody in this place, my friendship with David was one that was funny and light. I loved how serious and passionate he was about the issues that he cared about, so I think we have done justice to his memory today. Everybody can be proud of that, none more so than my hon. Friend the Member for Coventry North West (Taiwo Owatemi), who, as she said, could have talked dispassionately about this issue, but it was much better for her not having done so.

Similarly, I always have pride and admiration for anybody who goes down the petitions route to secure a debate in this place, because it is very hard to do. The fact that they have been successful demonstrates the strength of feeling. If that petition came from a place of frustration that these two conditions, endometriosis and polycystic ovary syndrome, lack public prominence, I hope this debate is a part of tackling that and that they take pride in that.

There were too many contributions to cover individually, but in aggregate colleagues have written for the Minister a manifesto for where to go next. There were common themes—a desire for better diagnosis and better understanding in primary care—and strong themes around the desire for more research and better support at work or through the welfare system. I hope the Minister will take from that four very concrete things that can be done quickly and can be focused on.

There were contributions that I did not want to miss, particularly from my hon. Friends the Member for Streatham (Bell Ribeiro-Addy) and for Worsley and Eccles South (Barbara Keeley), and from the hon. Member for East Renfrewshire (Kirsten Oswald), who talked about their personal experiences. I hope that the many people watching this, either in the Public Gallery or online, who are themselves experiencing these conditions, took some comfort from hearing about the lives of their representatives and how brave and willing they are to tell their own stories, which really enriched the debate.

My hon. Friend the Member for Kingston upon Hull West and Hessle (Emma Hardy) and the hon. Member for Livingston (Hannah Bardell) are the new co-chairs of the all-party group on endometriosis. We can have a lot of confidence in their leadership of that important parliamentary group. They brought hope in their contributions, so that gives us optimism for the future.

Before I make a couple of points of my own, I want to reflect on the points made by the hon. Member for Thurrock (Jackie Doyle-Price) about the gendering of healthcare in this country. Once again we saw great parallels from the debates following the Cumberlege review and the same messages coming back. To be clear, Mr Mundell, there is a one in 10 chance that either of us might present to our GP with erectile dysfunction. I know for certain that the GP would not say to either of us to come back when we wanted to have a child, and they certainly would not suggest removing the offending organ. Just as we would not tolerate that attitude, we should not tolerate it for anybody in this country.

Turning to endometriosis, Sarah Harris is a 23-year-old freelance journalist from my city of Nottingham, who has written about her experience. I will read a couple of paragraphs because they explain powerfully about life with endometriosis. She wrote:

“It’s hard to remember a time in my life where I wasn’t in pain. Memories of my youth are intertwined with flashbacks; hiding in toilets as blood soaked through my primary school uniform, curled up on the floor of the nurse’s office during secondary school whilst clenching my stomach in agony, skipping lectures in the first few weeks of university as I changed my sanitary pad for the third time that hour.

For a long time, I thought this life was normal. After all, from the age of 12 onwards doctors had been telling me that this was all just a ‘part of being a girl’ and I had to ‘deal with it’. By the time I realised this life was in fact far from normal, it was too late.”

Sarah’s story is not unusual. We have heard that the average diagnosis takes about eight years. Last year’s parliamentary inquiry found that nearly 60% of those with symptoms who were later diagnosed with endometriosis had visited the GP more than 10 times; one in five had had 10 or more hospital appointments; more than half had gone to accident and emergency, and one in four had gone more than three times—all of that happening before diagnosis. That is a real system failure. To put it in pounds and pence—if we really have to—that is more than £8 billion a year, through treatment, healthcare and the impact at work. It is a very significant challenge which behoves action.

Similarly, PCOS affects one in 10 women. We know that while there is no cure, there is treatment. PCOS can exacerbate long-term health conditions such as cancer and type 2 diabetes and, similarly to endometriosis, diagnosis can take many years. There is evidence of a genetic link and, as my hon. Friend the Member for Coventry North West said, a higher prevalence in certain ethnic groups, such as black and south Asian women. Again, it is something that Parliament ought to get a grip on. Those significant challenges are happening at a population level. As I said, the common theme is that it happens to women and those assigned female at birth.

We are currently debating the Health and Care Bill in Committee, which resumes for the final day tomorrow. We have discussed issues such as women’s health, reproductive health and the Cumberlege report on multiple occasions. There is nothing in the Bill on those issues and, I am sad to say, our amendments have not been accepted. What I have heard consistently from Ministers is that the women’s health strategy is coming and that action will be taken through that. I hope that the Minister in closing will make that commitment herself, because an awful lot of people are putting an awful lot of stock in that strategy.

I particularly hope that we will hear a commitment on research, because women’s health is under-researched. The “UK Health Research Analysis 2018” report showed that only 2.1% of publicly funded research in the UK was on reproductive and menstrual health, which is less than half of what it was in 2014. Of the more than 8,000 research projects funded by the National Institute for Health Research—an outstanding body—10 were on endometriosis and one was on PCOS. There is clearly significant space to do much better on research in this country. Only last year, the Australian Government committed $9.5 million to that research—we need that sort of ambition in this country as well.

I want to leave the Minister plenty of time to come back on all the important points that have been raised, so I conclude by saying that I think colleagues have written a really good manifesto for her. We want better diagnosis, better understanding in primary care, more research and better support at work or through the welfare system.