We were so delighted when we received an email from the All-Party Parliamentary Group on Women’s Health a few months ago telling us that they would be carrying out an inquiry into informed choice and fibroids and endometriosis, two of the most common conditions affecting women.
The aim of the inquiry was to explore whether women with fibroids and endometriosis are given an informed choice about the treatment options available and to outline what improvements need to be made.
In order to assess this issue the APPG on Women’s Health consulted with women affected by these conditions as well as healthcare professionals. This was done through a survey, written evidence submissions, an oral evidence session and freedom of information requests to all 139 hospital trusts in the UK.
The Lake Foundation started working on providing information and support to women with fibroids about two years ago following our own survey which found that more needed to be done to ensure women had enough information and support to manage their condition. We published a fibroids booklet, formed an Ask the Expert panel and hosted our first fibroids conference for women affected by fibroids. So for us the APPG’s inquiry was a breath of fresh air as it finally put a national spotlight on fibroids and in doing so enabled the challenges that women with fibroids experience to be raised at the highest level possible, in parliament, and we hope that this will bring about real change.
Results from the Inquiry
The inquiry has now come to an end and this week the APPG on Women’s Health published their report and, like the results of our survey, their report makes for grim reading. Nothing has changed.
Over 2,600 women with fibroids (237) and endometriosis (2,367) completed their survey and:
- 62% said they were not happy with the treatment choices
- 42% said they were not treated with dignity and respect
- 67% said they first found information about their condition from the internet
Looking at just the answers that related to fibroids, 70% of women were told about a hysterectomy suggesting that women are pushed towards this treatment option when many other options are available. Over 20% of women with fibroids felt the need to get a second opinion and 34% of women were not satisfied with their treatment.
Additionally, over 40% of women with fibroid were not told about the short-term complications of their treatment and over 50% weren’t told about the long-term complications.
The inquiry also identified a number of barriers that prevent women from receiving the best care possible. These included:
- Lack of public awareness
- Lack of understanding of these conditions by GPs
- Common myths about fibroids and endometriosis
- Lack of information
- An inefficient diagnosis pathway
- Lack of follow-up and support after treatment
As a result of their inquiry the APPG made a number of recommendations which fell into the following categories
- Improve patient experience
- Improve awareness
- Improve the diagnosis pathway
The Lake Foundation was happy to see this inquiry take place and happy to see the report published. We were disappointed that, even though we raised it, there was no recognition of the fact that fibroids are more common in black women and black women are more likely to develop multiple and more aggressive fibroids. This is an important point to highlight as it means that there needs to be a greater focus on black women who will need more support. GPs need to be aware of this so they can diagnose black women quickly and look at treatment stratgies before symptoms become unbearable.
For more information you can read the APPG’s full report below.