Petition Fund NHS scheme for women with Endometriosis to freeze their eggs
Women with endometriosis should have the option to freeze their eggs on the NHS, due to the high percentage of infertility (30-50%). Women undergoing chemotherapy have around a 40% chance of being infertile, yet they can get their eggs frozen on the NHS and women with endometriosis cannot.
Endometriosis is a debilitating disease where the lining of the uterus (endometrium) grows in ectopic sites, such as the ovaries, fallopian tubes and the pelvis. It occurs in 1 in 10 women but takes approximately 7 years to get diagnosed.
Around 30-50% of women with endometriosis are infertile and as there is no cure for endometriosis, there are very limited options to conceive naturally. One way of managing symptoms is surgery, which actually increases the chances of infertility.
This response was given on 23 April 2021
The National Institute for Heath and Care Excellence (NICE) has guidelines on the treatment of women with endometriosis, including the management of endometriosis-related fertility problems
Read the response in full
The Government is very sympathetic to women who are struggling to conceive due to suspected or confirmed endometriosis.
The National Institute for Health and Care Excellence (NICE) has published a range of information and guidance on diagnosing and managing endometriosis, including on fertility problems (NG73) - https://www.nice.org.uk/guidance/ng73/chapter/Recommendations. The guidance states that the management of endometriosis-related fertility problems should have multidisciplinary team involvement with input from a fertility specialist. This includes the recommended diagnostic fertility tests or preoperative tests, as well as other recommended fertility treatments such as assisted reproduction that are included in the NICE guidelines on fertility problems (CG156) - https://www.nice.org.uk/guidance/CG156
The level of provision of local health services available to patients, including fertility treatment, is a matter for Clinical Commissioning Groups (CCGs), who have a statutory responsibility to commission healthcare services that meet the needs of their whole population. In respect of NHS fertility services for women with endometriosis, the Government expects CCGs and clinicians to take full account of relevant NICE guidelines. Where NICE guidance does not make a specific recommendations on a particular topic, such as egg-freezing for women undergoing treatment for endometriosis, it does not mean that it cannot be funded by the NHS, and local commissioners should make individual decisions based on an assessment of the evidence.
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 effectiveness of medically assisted reproduction for endometriosis-associated infertility.
The Government understands the frustration around diagnosis times. NHS England advise that endometriosis is a gynecological condition in which some women are badly affected, while others might not have any noticeable symptoms. The only way to confirm a diagnosis of endometriosis is by a laparoscopy, an operation in which a camera is inserted into the pelvis via a small cut near the naval. The surgeon uses the camera to see the pelvic organs and look for any signs of endometriosis.
Given the highly invasive nature of the diagnostic procedure and the varying degree to which women experience symptoms, it can be more appropriate to treat mild symptoms on clinical grounds and reserve a laparoscopy with its inherent risks for women with more significant symptoms.
All obstetricians and gynaecologists receive training in the diagnosis, investigation and management of endometriosis, which is specifically listed as a topic in the core curriculum for obstetrics and gynaecology.
NHS England leads on commissioning specialised services and has developed a service specification for severe endometriosis. NHS England expects all units treating women with severe endometriosis and their partners to provide care that meets the standards laid out in the specification. Women who would like more information, can visit www.nhs.uk and search for ‘endometriosis’.
Unfortunately, damaging taboos and stigmas remain around many areas of women’s health, including gynaecological concerns, which can prevent women from starting conversations about their health or seeking support for a health issue. When women do speak about their health, all too often, they are not listened to. We absolutely must change this and that is why we are embarking on the first government-led women’s health strategy for England. The Strategy will set an ambitious and positive new agenda to improve the health and well-being of women across England and marks a turning point in how the government approaches women’s health – we are making women’s voices heard and placing women’s voices at the centre of this work.
To ensure the Women’s Health Strategy reflects what women identify as priorities, the government launched a 12 week call for evidence which will run until 30 May 2021 to gather women’s experiences and views regarding their health and care. The online survey within the call for evidence seeks information on women’s experiences with gynaecological conditions such as endometriosis, and these responses will be carefully considered as part of our work to develop the strategy.
We urge anyone impacted by endometriosis to respond to the Women’s Health Strategy consultation and help shape the strategy - https://www.gov.uk/government/consultations/womens-health-strategy-call-for-evidence.
Department of Health and Social Care
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Recent Parliamentary activity on Endometriosis
For Endometriosis Awareness Month, a summary of parliamentary activity on endometriosis since the issue was debated in Westminster Hall in 2019 has been published.
Read the summary: https://houseofcommons.shorthandstories.com/endometriosis/index.html
This ‘shorthand’ summary describes how the public’s voices were heard in the 2019 debate, and features the story of Kathryn from Cornwall. Since having her story read out in Parliament, she has gone on to be an advocate for those living with endometriosis and has made several appearances in local and national media.
The article covers other parliamentary activity on endometriosis since the debate, and gives details on how to submit evidence on the Government’s Women’s Health Strategy.
What are Westminster Hall debates?
Westminster Hall debates give MPs an opportunity to raise local or national issues and receive a response from a government minister. Any MP can take part in a Westminster Hall debate.
Debates in Westminster Hall take place on ‘general debate' motions expressed in neutral terms. These motions are worded ‘That this House has considered [a specific matter]'.