Closed petition Increase funding for research into Endometriosis and PCOS.
Endometriosis and PCOS are two gynaecological conditions which both affect 10% of women worldwide, but both are, in terms of research and funding, incredibly under prioritised. This petition is calling for more funding, to enable for new, extensive and thorough research into female health issues.
Many women seldom get the medical attention they require, or frequently have their symptoms miscalculated.
Due to personal experience, we are aware that the average time taken for a full diagnosis for endometriosis is 7 1/2 years in the UK.
A cure for these conditions has not yet been found.
It is important to us to start a conversation, to hopefully achieve funding to eventually find a cure for these conditions, or find more legitimate ways of treating symptoms.
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This response was given on 24 August 2020
The Government recognises the importance of research into endometriosis and polycystic ovary syndrome. The Government is funding a broad range of research through its funding organisations.
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The Government is aware of and sympathises with the hardships faced by women who experience severe symptoms from conditions such as endometriosis and polycystic ovary syndrome. While treatment is available, NHS England highlight that symptoms for both conditions vary widely, including in terms of severity. It is therefore important to seek clinical advice if women notice symptoms about which they have concern.
The Government funds medical research through the National Institute for Health Research (NIHR) and UK Research Innovation (UKRI). In the last five financial years to 2019-20, the NIHR and UKRI have awarded £8.52m for research into endometriosis and £6.60m for research into polycystic ovary syndrome. This includes a wide range of projects from basic science through to applied health research into diagnosis, treatment and service delivery.
Examples of research includes: a project, hosted by the NIHR School for Primary Care Research, examining what happens in primary care when women consult with endometriosis-like symptoms in order to start addressing delays in diagnosis and treatment and lead to improvement in care for women; and a randomised controlled trial exploring the use of two different treatment options for women with polycystic ovary syndrome whose eggs do not release from their ovaries to determine the most effect effective drug, or combination of drugs, needed to ensure women are offered the best available care with minimum side effects and spared the need for more invasive and costly fertility treatments. Other Government-funded research includes studies to investigate new therapeutics, the genetic basis for polycystic ovary syndrome, clinical prediction models of whether surgery will be successful for endometriosis, pain management trials and research to improve reproductive outcomes for women with these conditions.
The NIHR engages and involves patients, carers and the public in all the processes by which research is identified, prioritised, designed, conducted, evaluated and disseminated to improve the reach, quality and impact of the funded research. Women with endometriosis and polycystic ovary syndrome play a vital role in the research identified above.
The NIHR welcomes funding applications for research into any aspect of human health, including endometriosis and polycystic ovary syndrome; it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.
To support women with endometriosis, all obstetricians and gynaecologists have been trained in the diagnosis, investigation and management of the condition, which is specifically listed as a topic in the core curriculum for obstetrics and gynaecology.
NHS England expects providers to adhere to NICE guidance regarding the diagnosis, management and treatment of endometriosis available at https://www.nice.org.uk/guidance/NG73. NHS England also recommends the European Society of Human Reproduction and Embryology (ESHRE) guidelines on the management of women with endometriosis https://www.eshre.eu/Guidelines-and-Legal/Guidelines/Endometriosis-guideline.aspx. The guidance offers best practice advice on the diagnosis and treatment of women with suspected endometriosis as well as the effectiveness of medically assisted reproduction for endometriosis-associated infertility. It also provides information on the management of patients in whom endometriosis is found incidentally (without pain or infertility).
Polycystic ovary syndrome is a multifaceted, polygenic condition that often starts in adolescence and may have lifelong effects - through reproductive years to post-menopause. While there is currently no “cure”, there are several options for treatment and ways that individuals can alter lifestyle to ameliorate symptoms. Those who are overweight tend to have worse symptoms and long-term consequences and are less likely to respond to treatment.
There are many effective treatments and a large body of research looking at evidence-based therapy - whether for symptoms of hyperandrogenism, menstrual cycle disturbance or infertility. There are a number of consensus papers outlining the best approach for investigation and management.
NHS England advise that the UK patient support organisation Verity provides resources for patients as does the Women’s Network pages of the Royal College of Obstetricians and Gynaecologists’ website.
Department of Health and Social Care