Living with Endometriosis: Informed Choice? Women's Health Inquiry
The All-Party Parliamentary Group on Women's Health
This week, the final week of Endometriosis Awareness Month, has been pretty momentous. All week I've had people sending me links to articles talking about 'MPs finally listen', 'MPS call for endometriosis to be taken more seriously'. So, why is this all happening now?
In 2016, the All-Party Parliamentary Group on Women's Health launched an inquiry into the two conditions they felt were needing particular attention; endometriosis and fibroids. The APPG are a 'cross-party group of MPs and Peers in the UK Parliament of Westminster', who have come together due to their shared interest in women's health. Here's a little more about the group and what they're working on:
The group came together after Parliamentarians and patient advocacy groups realised that there was no dedicated forum at Westminster to discuss women’s health, and to raise awareness of conditions affecting only women or women disproportionately.
The group aims to empower women to ensure that they can make an informed choice about the best treatment for them and that they are treated with dignity and respect.
As well as providing a forum for MPs and Peers, the Group aims to bring clinicians, patients, and other relevant stakeholders to Westminster to discuss women’s health and related issues.
Endometriosis treatment is "unacceptable"
The report, 'Informed Choice?' was presented to parliament on Monday afternoon, and was delivered by not just members of the WHAPPG but some amazing volunteers to Endometriosis UK, who I heard caused tears with their touching speeches. Some of the main findings of the report reveal:
- 42% of women said that they were not treated with dignity and respect
- 62% of women were not satisfied with the information that they received about treatment options for endometriosis and fibroids
- Nearly 50% of women with endometriosis and fibroids were not told about the short term or long term complications from the treatment options provided to them.
- 67% of women said they first found information out about their condition from the internet.
There are also some seriously alarming stats related to endometriosis and NHS Trusts -
- Many Trusts records cannot distinguish between a diagnostic or a treatment laparoscopy.
- Only 16% of hospitals provide women with written information about HMB and pelvic pain.
- Trusts were asked how many laparoscopic excision surgeries and hysterectomies due to endometriosis/ adenomyosis/fibroids they had carried out over the last three financial years, 63% of Trusts could not tell the difference of purpose for the operation.
- When Trusts were asked about the number, cost and purpose of hysterectomies, often the Trust could not state what the procedure was for.
These statistics align with my story and every other story of the endometriosis sufferers I have spoken to and I'm so relieved and excited that there are finally statistics out there to prove it. They're sad and scary to read, but they're essential if we want treatment and diagnosis time to improve.
Whilst the report goes into much more depth on the above and the recommendations suggested in Parliament, the key suggestions from the inquiry are below:
- Information resources – women need to be offered written information on gynaecological issues with a full range of information about the condition and what their options are. These leaflets should be endorsed by the relevant clinical bodies and patient groups and the same generic, pre-approved leaflets should be made available at all centres, Trusts and gynaecology clinics. GPs, secondary care clinicians and nurses should provide or signpost women to high quality information and resources about endometriosis and fibroids, their impact and treatment options.
- Endorsed best practice pathway – this would mean that women would be streamlined more quickly into the right care, saving costs from unplanned admissions and ensuring women get access to all treatments. This should be agreed by the relevant Royal Colleges and patient groups.
- Education to include menstrual health at secondary schools along with wider awareness – far too often women put up with symptoms and incredible pain because they are not aware of what is ‘normal’ and they feel stigmatised by talking about ‘women’s problems’. Education modules should be included at the RCGP and RCOG for recognising and treating fibroids and endometriosis.
- Multi-disciplinary teams and clinicians working together – to ensure access to all treatments for women. Best practice pathway should be followed in this regard.
- NICE Guidance where it exists should be followed. These should not be implemented variably across the country as is currently the situation.
To read the full report or get in touch with the WHAPPG, you can visit their website.