2018-2019 Inquiry
Heart and Stroke Inquiry
The All-Party Parliamentary Group on Women’s Health has launched an inquiry into treatment and outcome disparities for women suffering from heart attack and stroke. The group would like to hear from patients about their own experience of living with each condition and accessing treatment, as well as clinicians who treat these conditions.
The WHAPPG would like to shine a particular light on stroke and heart care because the group feel that, typically, these two conditions are associated with men, and therefore female patients may not be given the treatment they need.
The APPG Inquiry aims to gather evidence around the issue of poorer rates of diagnosis and levels of treatment for women with common conditions such as myocardial infarction (MI) and stroke, and to provide recommendations as part of a Call to Action. The WHAPPG will lobby on recommendations in this Call for Action, with the aim of improving care for women suffering with heart attack and stroke.
Oral Evidence Session
The group held an oral evidence session on Monday 16th July 2018, in Parliament where they heard from the British Heart Foundation and Stroke Assoication, as well as representatives from RCGP and RCN about treatment options, outcomes and awareness around these conditions. This session will help the WHAPPG to understand what key recommendations the group can take forwards.
Moving forward, the group will invite submissions of written evidence on this topic and a patient survey responses. The findings will be published in Call for Action.
Written Evidence
The group accepted Written Evidence through an inquiry survey which closed on the 10th December, 2018.
Report Launch
The second report from the All Party Parliamentary Group on Women’s Health (WHAPPG) was launched on Thursday, 18th July 2019 and highlights that despite being two of the most common conditions women experience, stroke and heart attack remain under researched, under diagnosed and under treated in women.
Recommendations
1) Awareness campaign:
General awareness campaign focusing on symptoms and information for women regarding heart symptoms and stroke
Targeting of certain communities, such as BAME, which can be more difficult to reach. We need to look at further understanding of culture and other factors to take advantage of opportunities around healthcare and education.
Public-place targeting e.g. GP surgery leaflets, hairdressers, coffee shops
Aimed at women and their symptoms, and highlighting that these conditions are not ‘men’s conditions’
Awareness around female-specific stroke risk factors needs further work.
2) Education:
General public – it is important to educate the general public about the atypical symptoms that women often present with when experiencing heart attack, and the need to seek early treatment for heart attack and stroke.
Clinicians – it is vital to work with clinicians and educate them around the symptoms women sometimes experience, to ensure that they do not rule out heart attack or stroke too quickly.
There is a need to start a conversation around female-specific stroke risk factors.
3) Promote effective investigation of women’s symptoms and promote diagnostic techniques that could help in this regard.
4) More data/research - only with more research can we hope to better understand how to best treat heart attacks and stroke in women. We need much better post-acute data to be able to fully investigate women’s treatment, experiences and outcomes compared to men.
2017 Inquiry
Informed Choice Inquiry
The All-Party Parliamentary Group on Women’s Health launched an inquiry into whether women are given an informed choice about the treatment options available for endometriosis and fibroids.
The group used the findings from this inquiry to produce a report which assessed 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 were the conditions the group chose to shine a particular spotlight on. As a part of this they ran two surveys looking to hear from patients about their own experience of living with each condition and accessing treatment.
All responses of the survey were anonymous. This call for evidence was closed on Monday 27th February 2017.
Oral Evidence Session
The group also held an oral evidence session on Wednesday 18th January 2017 in Parliament where they heard 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) was launched on Monday 27th March 2017 and highlights insufficient care and concern for women with endometriosis and fibroids.
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 was launched 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
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.
Media
The report received widespread media coverage including in the paper and online versions of several of the 15 most circulated newspapers in the UK. Please find a selection of the coverage recieved below:
The Sun said "DON'T IGNORE IT GPs are wrongly dismissing woman’s painful womb condition endometriosis as period pains, report finds".
The Daily Mail ran with the heading "GPs dismissing womb illness as period pain: Thousands of women with painful condition are accused of imagining symptoms."
The Daily Telegraph said "Women with painful gynaecological problems told by GPs: 'It's all in your head'"
The Times said "Women given hysterectomy ‘for no reason’"
The Guardian used the report to launch its own enquiry into women's experiences of getting help for gynaecological problems.