Thank you for contacting me about endometriosis and polycystic ovary syndrome (PCOS).
From the experience of women I know, these conditions cause dreadful pain and ongoing severe discomfort so it is important to raise awareness of the impact on women not just here in the UK but also worldwide and I welcome efforts to do so as part of Endometriosis Action Month.
To provide support, all obstetricians and gynaecologists have been trained in the diagnosis and treatment of these conditions and clinical guidelines on the diagnosis and management of endometriosis, and PCOS, have been published to assist doctors. These guidelines must be followed in clinical settings and education, and in primary care, so women know what to expect and doctors have the knowledge they need to support women. I note your desire to see the NICE guideline on endometriosis updated and, while I am not aware of any current plans to do so, I will seek an update from ministerial colleagues.
I agree with ministers that it is unacceptable that the average diagnosis time for endometriosis is seven to eight years. It is imperative that we have a greater focus on women’s health to address issues like this and I warmly welcome the publication of the Government's Vision for Women's Health to tackle decades of health inequality. I was especially encouraged to see that gynaecological conditions, like endometriosis and PCOS, are a priority area in the Vision. The ambition is that every woman and girl will be able to access the right information, support and diagnosis for menstrual health and gynaecological conditions and ways to improve awareness of and care for those suffering symptoms of these conditions. More detail will be in the upcoming Women’s Health Strategy, due in spring 2022, and I look forward to learning more in due course.
Research: I welcome the work of Endometriosis UK and Verity, the UK PCOS Charity, to raise awareness of these conditions, as well as providing sufferers with further information and access to clinical trials and the latest research. Medical Research is funded through the National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI). In the last five financial years, I am encouraged to learn that the NIHR and UKRI have awarded £8.52 million for research into endometriosis and £6.60 million for research into PCOS. This includes a wide range of projects, from basic science through to applied health research into diagnosis, treatment and service delivery. It is important that women with these conditions play a vital role in this research. I am glad that funding is available for this important area of research and welcome the Minister for Patient Safety and Patient Care’s commitment to working to ensure that funding reaches the places it needs to.
Specialist Centres: NHS England has developed units for severe endometriosis, with the expectation that all units provide women with severe endometriosis with care which meets the needs of each individual woman. I believe it is essential that care of this kind is specialised to a woman’s unique needs, and I know that Ministers want to empower people to shape and manage their own health and care and make meaningful choices.
Mental Health: I am glad that women were invited to share experiences of gynaecological conditions, such as endometriosis and polycystic ovary syndrome (PCOS), through the Women’s Health Strategy call for evidence and I know that issues around mental health were raised as part of this. The Vision for the Women’s Health Strategy described the Government’s aim to examine further the ways in which differential factors, including pre-existing mental or physical health conditions, may impact the likelihood of a woman developing a mental health condition, and the outcomes they experience. I look forward to learning more in due course.
Thoracic Endometriosis (NICE Guideline): I know that women might also have endometriosis elsewhere in the body, other than within the pelvic cavity. Feedback from topic experts, sought by NICE, explained that there is currently no evidence upon which to base recommendations on how to best diagnose and manage endometriosis outside the pelvis, including thoracic endometriosis. The experts explained that treatment in specialist centres may improve patient outcomes and facilitate evidence generation on how to manage endometriosis outside the pelvis. I am glad that, in December 2021, NICE made an editorial amendment to the guideline section on referral for women with suspected or confirmed endometriosis to highlight that women with endometriosis outside the pelvic cavity should be referred to a specialist endometriosis centre. While I note your desire to see changes to the NICE guideline around thoracic endometriosis, I understand that NICE has said that while they do not expect to make further changes, the issue has been added to the issue log for the guideline for consideration in future surveillance, once more evidence is available.
I am sympathetic to the points raised in EDM 1110. While I support action already being taken and in progress to support women with endometriosis, I will be monitoring the progress made on this important issue in women's health.
Thank you again for taking the time to contact me.
Craig Whittaker MP