Endometriosis and Polycystic Ovary Syndrome

Baroness Keeley Excerpts

Monday 1st November 2021 Westminster Hall

[Barbara Keeley (Worsley and Eccles South) (Lab)]

It is a pleasure to speak in the debate with you in the Chair, Mr Mundell. I thank my hon. Friend the Member for Coventry North West (Taiwo Owatemi) for the way she opened this important debate.

Endometriosis and polycystic ovary syndrome affect one in 10 women and those assigned female at birth in the UK. As we have discussed, that means that over 1.5 million individuals are enduring a painful condition that can affect every aspect of their life. It is staggering that these conditions are so under-recognised. Common symptoms for a diagnosis include severe pain and heavy bleeding, but for those who have these conditions, that description barely scratches the surface of the reality of living with such a severe gynaecological disease.

One constituent wrote to me with a powerful testimony about her experience of living with polycystic ovary syndrome. She told me of the wide range of debilitating symptoms of her condition. She felt lacking in confidence and scared for her health and future. She felt that no one understood her, and she felt alone and overwhelmed by the condition. Constituents who have contacted me about endometriosis or PCOS report significant diagnosis times of between four and 14 years. This is an unacceptable amount of time for patients to wait while not getting the right care or even having a name for the condition that is causing their symptoms.

I had endometriosis and it had a big impact on my life. I was not diagnosed until the age of 32. I had multiple surgical interventions over more than 10 years. Surgery, as we have heard from my hon. Friend the Member for Streatham (Bell Ribeiro-Addy), does not cure endometriosis; it just comes back and back. Delays in diagnosing and managing endometriosis and PCOS can affect quality of life. Worse than the impact on quality of life, they result in a dangerous progression of the disease.

We have all touched on the work of the all-party parliamentary group on endometriosis, and I join Members in paying tribute to the work of Sir David Amess as its chair. There was an excellent report produced following an inquiry. I recommend that report and its 34 recommendations to the Minister, particularly those on investment in further research into gynaecological diseases, so that the waiting time for diagnosis can be reduced.

To these recommendations, we must now add the need to address the gynaecology backlog made worse by the pandemic. NHS England data indicate that the waiting list for gynaecology services has seen the largest increase of all the specialties since the pandemic began. Endometriosis UK’s recent survey showed that four fifths of patients with confirmed or suspected endometriosis had had NHS appointments for their condition postponed or cancelled due to the pandemic, and a third had not been given a new appointment date.

Sarah Lambrechts told the Health and Social Care Committee about her experience of having surgery for endometriosis delayed due to the backlog caused by the pandemic. The delay is, in her case, going to be for 18 months to two years. She said:

“I am 25 years old. For the next 18 months or two years—however long—I cannot plan my life. I cannot plan my career progression. I cannot plan to have a family. I cannot take care of myself some days.”

It is very sad that Sarah and thousands of others have experienced such an impact from the disease. We need urgent action so that those who have lived with the debilitating symptoms of endometriosis and PCOS for so long are not suffering because of a long wait for treatment caused by the backlog in NHS care. We owe it to those who have lived with these symptoms, often for many years, as I did, to reduce diagnosis time, improve treatments and, eventually, find a cure.

[David Mundell (in the Chair)]

I now call Alex Davies-Jones, who will not be our last Back-Bench contributor. I did not realise that Gavin Robinson wanted to speak. We will be able to squeeze him in, I think.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)]

I thank the hon. Member for Coventry North West (Taiwo Owatemi) for securing the debate, as well as all the petitioners who made it happen. I join everyone in paying tribute to Sir David Amess; I know he would have been here, holding my feet to the fire on what I was going to do about the important issues that have been raised.

Members on all sides of the House have spoken about the challenges faced by women suffering from endometriosis and PCOS. I pay tribute to the hon. Member for Streatham (Bell Ribeiro-Addy), who could not have put it better on not only the struggle for diagnosis, but the trauma of going through treatment. That is not an uncommon experience, unfortunately. There are serious issues to address. As my hon. Friend the Member for Thurrock (Jackie Doyle-Price) said, the conditions affect a significant number of women across the country. We are not talking about a small problem; its effects are on a wide scale.

Members have spoken about the pain, the heavy periods or lack of periods, and the facial hair or hair loss. However, it is about not only the symptoms, but the long-term implications. Fertility is an issue for both conditions, but they also affect relationships, the quality of life and mental health. The effects are wide-ranging.

It is unacceptable that the average diagnosis time for endometriosis is seven to eight years and that 40% of women take 10 or more appointments even to get to the stage of getting tests done and being diagnosed. It is imperative to have a greater focus on women’s health and to address some of those inequalities.

Although hon. Members have rightly said that this is not just about fertility, if it is about fertility for some women, those seven to eight years may be the only chance they have. That is seven to eight years too long. That is why we are embarking on England’s first women’s health strategy, which will set out a new agenda. I can confirm that it will include a section on gynaecological conditions, including endometriosis and polycystic ovary syndrome, and it will look at the research element. In the short time I have, I cannot expand too much, but I will announce more details shortly, because we hope to publish that before the end of the year.

I know that many, many women, men and families will be listening to this debate, and I want to put it on the record that I hear the concerns and issues that are being faced. I have my listening ears on and we will be taking steps to deal with some of the issues. The NICE guidelines on endometriosis are really clear. They list the symptoms that should be picked up and addressed, and that should alert healthcare professionals to the need to refer women, not gaslight them. It is concerning that, despite the NICE guidelines, many women are struggling in the way that they are. For PCOS, the clinical knowledge summary highlights symptoms that should be picked up and that should be flags for referral and care.

I take the point of the hon. Member for Belfast East (Gavin Robinson). We heard from the hon. Member for Arfon (Hywel Williams) that, when there are issues in Wales, women can access services in Liverpool. I am happy to meet the hon. Member for Belfast East to see what options are available for women in Northern Ireland.

In the short time I have, I want to turn to research—the subject of today’s debate. We have a world-class research system, as the vaccine rollout has shown, but we know that women are under-represented generally in research, whether that is older women, women from ethnic minority groups, women of childbearing age or women with disabilities. There is evidence that research is not addressing women’s issues. It is crucial that we have an evidence-based approach to dealing with endometriosis and PCOS because that is how we will ensure that the gold standard of treatment is being followed and that women know what they should expect. That is half the problem: women are in the dark about how they should be treated and their condition managed.

Funding is available. Over the past five years, the National Institute for Health Research has funded £8.52 million of endometriosis research. There is a £2 million trial on peritoneal endometriosis, looking at surgery versus non-surgical interventions to manage chronic pain. There is a study of endometriosis in primary care and the experience of both GPs and patients to see what is going wrong at the diagnosis stage. A practical toolkit has been put together to help patients and clinicians. We are also funding a study interviewing up to 80 women about what it is like to have a urogynaecological condition and the experiences they go through. There is £6.65 million of research into PCOS, including a £2 million randomised control trial looking at fertility options for women whose eggs are not being released from their ovaries.

Research is happening. My plea to researchers is that funding is not the barrier. There is a really robust system whereby research is presented, whether from clinicians, researchers, charities or other organisations, and judged on its merits in terms of what it is trying to achieve. The funding envelope is not the barrier. I encourage those who want to do research to come forward. If that is not happening, I am very happy to work with the APPG to find out where the gaps are and, if the research is not being accepted or funded, where we can do better.

[Barbara Keeley]

The Minister has not yet covered the serious point I made earlier about the backlog in gynaecology. Some 80% of women who are confirmed or suspected to have endometriosis have had their NHS appointments postponed or cancelled because of the pandemic. In my remarks, I quoted somebody who will now have to wait 18 months to two years for her surgery. That is not acceptable.

[Maria Caulfield]

I absolutely take the hon. Lady’s point. In the spending review, money for elective procedures was allocated to clear some of that backlog. People are waiting a long time, and every effort will be made to clear the backlog as soon as possible.

I reassure colleagues that we want to ensure not just that there is an evidence-based pathway for both endometriosis and PCOS in the NICE guidelines, but that it is followed in clinical settings, so that women know what to expect; in clinical education, to improve both undergraduate and postgraduate training, so that clinicians have the knowledge that they need on both conditions; and in primary care, to ensure good robust knowledge among GPs about both conditions, which are not just about bad periods or abdominal pain, and about the referral pathways that should be followed. On school education, it is so important that young women know what is and is not acceptable in relation to both conditions, so that they are pushing GPs rather than waiting seven to eight years for diagnosis or 10 to 12 appointments for an answer.

Research can make a real difference in a number of areas. Before I hand back to the hon. Member for Coventry North West, I reassure colleagues that funding is available. I urge all researchers who want to conduct research in this area to submit applications and bids, because there is no way that we will deal with many of the issues that have been raised today without them.