On Monday 1 November, MPs attended a debate on research into endometriosis and polycystic ovary syndrome (PCOS) in Westminster Hall - we hope this will be the first step towards improved support for those with the conditions.The debate arose due to a petition signed by over 100,000 people asking the UK government to increase research funding for endometriosis and PCOS.
Endometriosis UK and our colleagues at PCOS charity Verity joined forces to run a joint campaign to encourage our supporters to write to their MP and ask them to attend the debate. We are very grateful to the nearly 6,000 supporters who wrote to their MPs – in the end, every one of the UK's 650 MPs were contacted about the issue. We are also grateful that many supporters have shared their MPs' responses with us - this feedback is really useful for our ongoing engagement.
It was good to hear supporters saying they took heart from MPs showing that they believe and take seriously the experiences of the endometriosis community - one of our longstanding volunteers told us they were in tears listening to the proceedings.
During the debate, tributes were paid to the late Sir David Amess, a key supporter of the community – find out more about the work he did here.
Post debate call for action
Following the debate, Endometriosis UK and Verity developed a call for action based on the concerns addressed and points raised:
- The Women’s Health Strategy for England to address endometriosis and PCOS in a holistic manner and not only in relation to reproductive health and fertility.
- Dedicated research funding for each of endometriosis and PCOS with a particular focus on identifying the causes of both conditions, which remain unknown, as well as developing better treatments. Given the historic lack of research into both conditions, we are calling for a decade of investment to redress the balance.
- The Women and Equalities Select Committee to hold an inquiry on the historic underfunding of research into endometriosis and PCOS:
- Understanding historic underfunding of endometriosis and PCOS and how to rectify for the future.
- Considering the role of gender and racial inequalities.
- Quantifying the research funding gap – how much is needed and where should it be focused to support women and those assigned female at birth with these conditions?
- How existing and future research funding streams could be amended to better encourage much needed research into under-researched conditions like endometriosis and PCOS.
- Improving the diagnosis and care of those with endometriosis and PCOS including:
For both conditions
- Rigorous implementation of relevant NICE guidance[i] on the diagnosis and management of endometriosis and NICE clinical knowledge summary on PCOS[ii] including clearer and more streamlined diagnostic and care pathways.
- Recognising the mental health impact of endometriosis and PCOS and ensuring access to mental health support for those who need it.
- Addressing gaps in existing NICE guidance on endometriosis such including non-pelvic endometriosis such as thoracic endometriosis, pain management and mental health support.
- Reducing the average 8 years it takes get a diagnosis of endometriosis[iii] to under four years by 2025 and under one year by 2030, including by investing in improved healthcare practitioner training to recognise symptoms, diagnostic capacity in gynaecology departments and Endometriosis Specialist Centres[iv], and research to develop a non-surgical diagnostic method.
- Re-classifying laser treatment as “non-cosmetic” to enable those with PCOS needing laser treatment for hirsutism and/or acne, to receive it on the NHS.
- Developing a NICE guideline on the diagnosis and management of PCOS; currently there is only a clinical knowledge summary (CKS) on PCOS. This guideline should align with the international evidence-based guideline on PCOS[v] developed by over 3,000 healthcare professionals and patients.
- Supporting the establishment of PCOS specialist services like those available at the University Hospitals Coventry and Warwickshire NHS Trust[vi], across the NHS in England with capacity to meet clinical need.
- Supporting the creation of an All Party Parliamentary Group on PCOS to help push for the changes needed to diagnosis and support.
- Education and training for health professionals is currently inadequate for these two complex conditions that affect millions across the UK. Support is therefore needed to enable health professional bodies and Royal Colleges including the General Medical Council (GMC), the Royal College of Obstetricians and Gynaecologists (RCOG), Royal College of General Practitioners (RCGP), the Royal College of Emergency Medicine (RCEM) and the Royal College of Nursing (RCN), to ensure appropriate education and training on menstrual wellbeing including menstrual health related conditions including:
- That endometriosis and PCOS are not just fertility/reproductive health concerns, but conditions with symptoms that can have a negative impact on quality of life.
- Recognising the symptoms, and the impact both conditions can have on mental health.
- Training for primary care practitioners on diagnostic and referral pathways.
- Clarification of the application of the 2010 Equalities Act to chronic conditions like endometriosis and PCOS, even when symptoms are recurring or fluctuating, to ensure those who experience chronic health problems a result of either or both conditions:
- Are better supported by employers including the ability to have reasonable adjustments.
- Can be better protected from disciplinary action including dismissal due to their health problems.
- Are able to better access statutory sick pay (SSP) and disability benefits where needed.
[i] NICE Guideline on Endometriosis: Diagnosis and Management (NG 73), 6 September 2017 and NICE Quality Standards on Endometriosis (QS 172), 6 August 2018
[v] International evidence based guideline for the assessment and management of polycystic ovary syndrome, published in 2018, due to be updated soon.