A new report by the All-Party Parliamentary Group on Women’s Health shows that:
- 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 fibroids and endometriosis.
- Nearly 50% of women with endometriosis and fibroids were not told about the short term or long term complications from their treatment.
The All-Party Parliamentary Group on Women’s Health has found that women are not being treated appropriately when it comes to their gynaecological health.
A survey of over 2600 women with and endometriosis and fibroids – two of the most common gynaecological conditions – found nearly half felt that they were not treated with dignity and respect, and the majority thought information they received about their condition was insufficient.
This report 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.
The report 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 to appropriate specialist care;
- Offered information about all possible treatment options, and their side effects and complications.
The findings of the report show that this basic standard of care is all too rare.
This report also highlighted:
- 40% of women with endometriosis needed 10 GP appointments or more before being referred.
- 39% of women sought a second opinion.
- 67% of women said they got most of their information from the internet.
-Only 16% of Trusts provide women with written information about Heavy Menstrual Bleeding and pelvic pain.
- 86% of Trusts could not provide information as to how many diagnostic tests were needed for endometriosis and fibroids diagnoses.
- - 40% of those surveyed with endometriosis needed 10 GP appointments or more before being referred to the specialist.
- 12% of women surveyed with fibroids took 1-2 years from their diagnosis to get their treatment.
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.
The APPG recommends:
1) 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.
2) 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.
3) 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.
4) Multi-disciplinary teams and clinicians working together – to ensure access to all treatments for women. Best practice pathway should be followed in this regard.
5) NICE Guidance where it exists should be followed. These should not be implemented variably across the country as is currently the situation.
Amy Maidment, endometriosis patient:
‘I suffered terribly trying to get an accurate diagnosis and then information on all the possible options for my treatment. At times I felt I was fighting a losing battle, my symptoms not always being believed and sometimes implications it was all in my head. Even after diagnosis I have struggled to understand what my options are for treatments, and the side effects or long term health implications of different treatments might be. I’ve waited months and months for surgery, I don’t even have a date yet for when that will be. I have lost large chunks of my life, impacting on my education and employment. More needs to be done to educate women about what is normal menstrual health and to educate healthcare professionals on endometriosis, gynaecological health, and how to put the patient first.’
Sarah Hutchinson, fibroids patient:
‘My GP’s lack of understanding, and failure to refer me quickly to a gynaecologist, meant that my Fibroid had a long and devastating effect on my life. I was left physically and emotionally shattered by a range of symptoms my doctors – despite a scan showing I had a Fibroids – treated as completely separate. When I raised concerns about my periods - which were so heavy I could barely leave the house – this barely seemed to register with the GP.
It shouldn’t be a battle to see a gynaecologist, whether you have a Fibroid, Endometriosis, PCOS… Women need to know how to spot that something is ‘wrong’ and be supported to get help. The impact that Fibroids can have on your fertility is terrifying – women need more information, and much, much earlier in the process – so they can make an informed decision about their treatment options. I was lucky that I got good advice about what was best for me – but have been horrified how many women I’ve spoken to since who have been pushed towards hysterectomy only.’
Paula Sherriff MP, Chair of the WHAPPG:
‘I was shocked by some of the stories we heard. The group has found that best practice does exist, and there are ways that women should be treated in the NHS. 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.
If women cannot even get the right diagnosis and information about treatments, how can they possibly decide what is the best care for themselves? 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 statistics in this report show that women are all too often dismissed by healthcare professionals when discussing their symptoms and choices. 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. Women should be given the full range of information, in a written format, so they are able to make an informed choice.’
Responding to the report, Emma Cox, CEO of Endometriosis UK said: "We are delighted to be working with the APPG on Women's Health to raise awareness of endometriosis and related gynaecological conditions, and the severe challenges women face in receiving a diagnosis and treatment. Sadly, the issue raised are ones we hear all too often. Yet as the report highlights, simple steps like educating and raising awareness for healthcare professionals and providing better information and education on menstrual health could significantly decrease diagnosis time (currently an average of 7.5 years for endometriosis). As well as supporting women to access the treatments and support they need, it would save the NHS money through reduced visits to GPs and treatments for the wrong conditions."