Informed Choice Inquiry

The All-Party Parliamentary Group on Women’s Health has launched an inquiry into whether women are given an informed choice about the treatment options available for particular conditions.  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.       

The group aims to use the findings from this inquiry to produce a report which will assess if women are given an informed choice about treatment options and outline what further improvements might need to be made. 

Patient Surveys

Endometriosis and fibroids are conditions the group would like to shine a particular spotlight on and so would like to hear from patients about their own experience of living with each condition and accessing treatment.

If you have been suffering with endometriosis we would welcome your participation in the group’s endometriosis survey: https://www.surveymonkey.co.uk/r/informed-choice-endometriosis

If you have been suffering with fibroids we would welcome your participation in the group’s fibroids survey: https://www.surveymonkey.co.uk/r/fibroids-informed-choice

All responses will remain anonymous. This call for evidence was closed on Monday 27th February 2017. 

Oral Evidence Session

The group is also holding an oral evidence session on Wednesday 18th January 2017 in Parliament where they would like to hear from experts about current practice as well as potential barriers and issues in order to understand what key recommendations the group can take forwards. 

Report Launch

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. If you would like to download a copy of the report you can do so here

The WHAPPG 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 (Monday 27th March 2017) by the Group in Parliament, reveals how these women were treated across the pathway, 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. 

Recommendations

  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.