APPG report highlights insufficient care for women with endometriosis and fibroids

The first report from the All Party Parliamentary Group on Women’s Health (WHAPPG) in the UK highlights insufficient care and concern for women with endometriosis and fibroids.

The APPGWH has found that women are not treated with dignity, are not provided with sufficient information about their treatment options, and are not told about treatment side-effects appropriately when counselled about their gynaecological health.

In a survey of over 2600 women (with endometriosis and fibroids):

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.

The report, which will be presented this afternoon by the WHAPPG in Portcullis House, London (UK), reveals how these women were treated by the NHS, some of the barriers that they faced in getting a diagnosis and treatment, and the complete lack of control and choice they were offered over their own care.

Key findings from the WHAPPG report

The WHAPPG report, a result of a survey conducted by the WHAPPG via social media and through national support organisations, also sets out the key issues that are important to patients and crucial for their care:

Symptoms and concerns should be taken seriously, and not dismissed and/or ignored;
Timely referral is needed to appropriate specialist care;
Information must be offered about all possible treatment options, and their side effects and complications.

The findings of the report show that these basic standards of care are too rare!

The report also highlighted:

40% of women with endometriosis needed 10 GP appointments or more before being referred – not dissimilar to what we learned from WERF’s Global Study of Women’s Health;
39% of women sought a second opinion – something we encourage women with endometriosis to do;
67% of women said they got most of their information from the internet – which can be “scary” if that information is not from a reliable resource;
Only 16% of NHS Trusts provide women with written information about heavy menstrual bleeding and pelvic pain;
86% of NHS Trusts could not provide information as to how many diagnostic tests were needed for endometriosis and fibroids diagnoses.

What next?

The press release from the WHAPPG states that:

With some simple changes, and a shift in the way that the NHS thinks about women’s gynaecological health, a vast difference could be made to the lives of thousands, if not millions of women, in the UK.

which was supported by the following comment by its chair, Paula Sheriff MP:

Paula Sheriff MP Chair APPGWH

I was shocked by some of the stories we heard. Women should not to be dismissed and ignored, they should be referred to appropriate care and then given information and all possible treatment options, and their side effects and complications.
Women should be given the full range of information, in a written format, so they are able to make an informed choice.
Women deserve every opportunity to take control of their own healthcare and this group is striving to empower women so they have this potential.
The fact that almost 50% of women did not feel that they were treated with dignity and respect is appalling.
The fact that women feel the need to seek further advice and they are not satisfied with the information that professionals give them shows that more needs to be done to empower women so they can make these choices.

Support for research is essential

Professor G David Adamson
President, World Endometriosis Research Foundation

President of the World Endometriosis Research Foundation (WERF), G David Adamson, stated that this is an important report that highlights long-standing barriers and challenges to the care of millions of women, including those with endometriosis.

Endometriosis affects almost 200 million women globally, causing significant pain, infertility, and reduction in quality of life.
Despite the major burden of this disease there is almost universal lack of recognition of its importance in women’s healthcare.
Ignorance regarding endometriosis is a problem not only for those affected by it but also for many who deliver healthcare. This commonly results in failure to diagnose and manage endometriosis, and insensitive care.
The APPG report identifies the key issues to begin rectifying the situation. These include taking seriously the symptoms and concerns of women with pelvic pain and abnormal uterine bleeding, timely referral to appropriate specialist care, and offering information about treatment options, side effects, and complications.
In addition, the APPG recommends better information resources, best practice pathways, education regarding menstrual health at secondary schools, multidisciplinary healthcare teams, and the following of practice guidelines; these are all interventions that WERF supports.
Finally, WERF believes it is important to increase support for research that will enhance our understanding of endometriosis, identify better diagnostic methods, develop more effective treatment interventions, and improve delivery of healthcare to women suffering from endometriosis.”

The All-Party Parliamentary Group on Women’s Health (APPGWH) recommends

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.

About the All-Party Parliamentary Group on Women’s Health

The WHAPPG 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.