UK parliament debates funding for research in endometriosis and PCOS

by Francesca Hearn-Yeates

On Monday 1 November 2021, members of the UK parliament participated in a debate on research into endometriosis and polycystic ovary syndrome (PCOS) in Westminster Hall.

Endometriosis has only been mentioned in eight UK parliamentary debates in the last 200 years – the first one just 20 years ago.

‘Increase funding for research into endometriosis and polycystic ovary syndrome (PCOS)’ was a petition launched in July 2020. It gained a total of 101,910 signatures, leading to a UK parliamentary debate on 1 November 2021.

Sadly, this debate was delayed from its initial well-publicised date due to the murder of Sir David Amess MP, who chaired the All Party Parliamentary Group (APPG) on Endometriosis since its inception in 2018 until his untimely death last month. The turnout for the rearranged debate was disappointing, with only 20 MPs (of a possible 650) in attendance and 65% of those being women.

Disappointing turn-out – but powerful testimonies

It is possible that the lack of turnout at this debate was due to a lack of understanding of the life-changing impact of endometriosis and PCOS. A number of the MPs in attendance were brave enough to share their own experiences:

• Bell Ribeiro-Addy, MP for Streatham, told of her struggle with endometriosis and subsequent gaslighting from medical professionals
• Kirsten Oswald, MP for East Renfrewshire, shared that she had had a 6-month long period
• Munira Wilson, MP for Twickenham, shared that one of her constituents had bled every day for two and a half years.

Experiences like these are not uncommon; and, maybe if the other 630 MPs were bleeding every day, or had a daughter, a sister, a mother, a partner, or a friend going through this trauma, they might be more inclined to provide their support?

Endometriosis and PCOS are not ‘just reproductive problems’

Taiwo Owatami
MP for Coventry North West

Taiwo Owatemi, MP for Coventry North West, opened the debate with background on both endometriosis and PCOS, raising the issue that undue focus on the conditions being regarded purely as reproductive problems is too simplistic, quoting estimates that one tenth of endometriosis cases are outside of the pelvis [1].

A number of MPs spoke of those with endometriosis saying that they are being refused treatment until they were interested in getting pregnant.

Gavin Robinson, MP for Belfast East, spoke of one constituent who had been advised by a GP that pregnancy was the best solution to her endometriosis symptoms, even though at the time she was just 16.

Several speakers in this debate stated forcefully that women do not purely exist to reproduce, and should not be treated as so. Endometriosis is a chronic pain condition, and childbirth should not be considered as a viable treatment option.

→  Myths and misconceptions in endometriosis!

Emma Hardy
MP for Kingston upon Hull West and Hessle
Co-chair of the APPG on endometriosis

Emma Hardy, MP for Kingston upon Hull West and Hessle, and the new co-chair for the APPG on Endometriosis, also raised the important issue of financial support, stating that the definition and criteria for statutory sick pay does not recognise long-term conditions, such as endometriosis.

Her co-Chair, Hannah Bardell, MP for Livingston, said this is despite

it [endometriosis] being ranked by the NHS as one of the top 20 conditions involving pain so disabling that it can prevent sufferers from doing daily tasks.

In 2012 a model predicted endometriosis was costing the UK economy £8.2 billion each year in treatment, loss of work productivity, and healthcare costs [2] Maybe if we instead invested this money into developing treatments and increasing patients’ quality of life, we could eventually have a positive impact on the economy?

Actual promises – or broken promises?

Bardell also highlighted a serious deficit in funding, stating that,

in 2018, only 2.1% of publicly funded research in the UK went on reproductive and menstrual health, down from 2.5% in 2014 [3,4].

Hannah Bardell
MP for Livingston
Co-chair of the APPG for endometriosis

This is a 16% decrease in funding over four years.

At the time of writing, searching ‘endometriosis’ in the UK Research and Innovation’s (UKRI) award’s database produces 35 hits, meaning they have funded 35 endometriosis-related projects since 2003. On the other hand, if you search ‘diabetes’, a condition with the same incidence rate but one that affects both sexes, they have funded a total of 1758 projects in the same time period. Six of the endometriosis projects were given over £1m, compared to 243 of the diabetes projects, with a further ten of the latter receiving a pot greater than £10m [5].

It is therefore not surprising that our research is not progressing at the speed of other medical conditions. I appreciate the work that the APPG have been doing, but until we see this translated into investment it will remain as no more than another set of broken promises.

The unacceptable delay in diagnosis

One key theme of the debate was the unacceptable delay in diagnosis time; an average of 8 years in the UK. It was suggested that funding must be provided to create a framework to reduce the diagnosis time.

I agree with this statement and hope that by raising the profile of endometriosis we increase awareness in both patients and medical professionals, which will undoubtedly speed up the diagnosis process. However, this argument is forgetting that diagnosis remains almost impossible without surgery for most subtypes of endometriosis, an issue which unfortunately will not be solved by creating a framework alone.

We require increased research funding to develop a less invasive diagnostic technique.

Would progress be different if men had endometriosis?

The second theme I will touch on was continuously repeated throughout: if this condition affected 1 in 10 men, we would not be having this debate at all. To quote Alex Norris, MP for Nottingham North,

There is a 1 in 10 chance [men] might present to our GP with erectile dysfunction. I know for certain that the GP would not say … to come back when we wanted to have a child, and they certainly would not suggest removing the offending organ.

Getting to grips with reality in endometriosis research

Overall, it was really good to hear MPs voice their support for increasing funding for research into endometriosis, however some of the contributions were problematic. Emma Hardy praised the recent £10,000 grant awarded to a research group at the University of Hull, to research biomarkers for endometriosis; she stated that

…[it] would be revolutionary if it came through.

Professor Krina Zondervan
Chair of the department of women’s and reproductive health, University of Oxford

As anyone in the field will know this is a huge challenge and many investigators have been desperately trying to find a single biomarker for decades. In September, I attended the Endometriosis UK Research Network Meeting, a conference-style event for UK researchers in the field of endometriosis. At the meeting, Professor Krina Zondervan of the University of Oxford addressed the room in a plea that we each

stop trying to be ‘the one’ to discover a biomarker; independently it is an unachievable challenge and one we will only succeed in through collaboration.

I do not expect our MPs to be aware of the inner workings of the research community, however, the aspiration of identifying a biomarker by a single research group on a £10,000 budget gives the impression of it being simple task that we ‘just had not thought of yet’.

Maria Caulfield, MP for Lewes and Minister for Patient Safety and Primary Care, was present at the debate to respond to the concerns raised about lack of funding in endometriosis and PCOS. In her response, she said

My plea to researchers is that funding is not the barrier. There is a really robust system whereby research is presented … and judged on its merits in terms of what it is trying to achieve… I encourage those who want to do research to come forward

implying that we need a greater number of research studies into endometriosis rather than an increase in the overall funding. I agree with the necessity to increase the number of research studies; more endometriosis research groups competing for the funding grants would increase the probability of an endometriosis research study securing an award. However, how are we expected to establish entirely new research groups without added funding? And how are we expected to persuade new researchers into a field where our government has actively decreased the funding for reproductive and menstrual health?

The debate may be over, but endometriosis is not going away – and nor are our efforts to break the silence and put an end to endometriosis!

References

1. Unpublished data from the BSGE
2. Simoens S, Dunselman G, Dirksen C, et al. The burden of endometriosis: Costs and quality of life of women with endometriosis and treated in referral centres. Hum Reprod. 2012;27(5):1292-1299.
3. UK Health Research Analysis 2018, p.33 UK Clinical Research Collaboration (2020)
4. UK Health Research Analysis 2014, p.48, UK Health Research Analysis UK Clinical Research Collaboration (2015)
5. UKRI Gateway to Publicly Funded Research and Innovation [accessed 10 Nov 2021]

About the author

Francesca Hearn-Yeates graduated from University College London with a Bachelor of Science (Honours) in Biochemistry. She went on to complete a Masters of Research in Molecular and Cellular Biosciences, with a focus in immunology, at Imperial College London in 2018.

Pursuing her passion for Women’s Health, she is currently a PhD student under the supervision of Professor Andrew Horne at the University of Edinburgh, and a part of the EXPPECT team.

Her research will investigate the influence of diet on the gut microbiome, and the subsequent impact this has on endometriosis-associated pelvic pain, in an aim to offer novel strategies for non-invasive pain management. You can keep up with Francesca’s progress on Twitter and Instagram.

See also

• UK parliamentary debate on endometriosis and PCOS [YouTube – starts seven minutes into the video]
• Full transcript of the UK parliamentary debate on endometriosis and PCOS [Hansard]
• Endometriosis APPG inquiry shows little progress in a decade
• What needs to be done for those with endometriosis?
• Support for those with endometriosis
• Facts about endometriosis
• Myths and misconceptions in endometriosis