1st Report - Women's reproductive health conditions

High quality education about reproductive health is vital. Educating girls about their periods and the possibility of related conditions at a young age safeguards them against the distress of not understanding what is happening to their bodies and empowers them to identify problems and to seek help. We welcome the inclusion of teaching about reproductive health conditions in the draft RSHE statutory guidance.

However, we are concerned that the teaching of the menstrual health element of relationships, sex and health education is insufficient and inconsistent. It is often delivered too late in a child’s development to be of use and by teachers who lack the necessary training. The requirement in the draft guidance that schools need to cover reproductive health conditions only by the end of year 11 contrasts with Government advice that puberty and menstruation should be addressed before onset. It needs revising.

The Government should ensure teachers tasked with delivering the menstrual and gynaecological health element of RSHE receive the training necessary to deliver it effectively. Information on women’s reproductive health conditions should be taught early on in secondary education, preferably around the time most girls first experience menstruation. That information should include guidance on what is and is not considered to be healthy reproductive health and cover intersectional differences, preparing pupils to advocate for their needs and seek help when necessary.

The guidance fails to recognise the importance of boys and men understanding reproductive health conditions that their peers might experience and their role in changing the culture and stigma that girls face. (Paragraph 26) 72 Publicly available information

The statutory guidance should specify that boys should be taught about female reproductive health conditions.

We welcome the ongoing improvements to the NHS website to include information about a wider range of women’s reproductive health conditions, information to specific communities and signposts to support and the ambition to include that information in alternative formats.

We know that many women and girls are using online spaces to get information and seek help while there are gaps in support in medical fields. It is therefore imperative that the NHS and trusted sources become a first-port-of-call to prevent misinformation. The NHS website and app must therefore be comprehensive, accessible, inclusive, and highly-visible.

To supplement improvements in the provision of information on the NHS website, we recommend the inclusion of an interactive tool which can help women to determine whether they might have a reproductive health condition. We further recommend that information on specific conditions, contains links to the relevant medical guidelines so that patients can make themselves aware of the care they should expect. Information on the website should be made accessible by default, including in different languages. The link between reproductive health conditions and mental ill health should also be clearer, with information on how to access support signposted. Women’s health hubs should be commissioned to provide tailored information at a local level, in a range of formats suited to their local population.

With women and girls relying on online spaces and a proliferation of femtech apps to fill gaps in their knowledge of reproductive health conditions, the NHS should increase its own digital and social media presence in relation to reproductive health conditions. This should be consistent rather than a one-off campaign and monitored to ensure it reaches those in need of support with their reproductive health. (Paragraph 36) Accessing support and treatment

There is a clear lack of awareness and understanding of women’s reproductive health conditions among primary healthcare practitioners, particularly when those conditions occur in young women and girls. Women are finding their symptoms normalised and their pain dismissed, with an ingrained belief among some healthcare professionals that women, 73 particularly those from a minority ethnic background, are exaggerating their symptoms. Such medical misogyny and racism is unacceptable.

The NHS needs to urgently implement a training programme to improve the experience of treatment and diagnosis in primary care for women, girls, trans and non-binary people with reproductive ill health. Improving early diagnosis, including through the provision of follow up appointments, must be a priority to prevent a worsening of symptoms. The programme should seek to challenge racial biases and ensure that all those experiencing pain are believed and able to access treatment and support quickly. It should include training to support women and girls whose socio-cultural situation or beliefs make it harder to discuss reproductive health conditions and involve women and girls with lived experience.

Improvements in diagnosis times should be made a key performance indicator for the Women’s Health Strategy for England.

We support the Royal College for Obstetricians and Gynaecologists’ initiative for a guideline on inclusive care. When finalised it should be implemented throughout the healthcare system and medical practitioners must receive adequate training, with implementation monitored by the RCOG.

Healthcare practitioners lack sufficient understanding of the range and suitability of treatment options available to treat reproductive health conditions. Too often conditions are viewed through the prism of fertility which, while a necessary consideration, should not be the only factor influencing a clinician’s judgement. There is also an evident lack of empathy in primary care around the adverse effects some treatment options may have on a patient. For example, approaches which focus on managing symptoms rather than diagnosis risk diseases progressing with potentially life altering consequences.

The NHS must take steps to ensure healthcare practitioners keep up to date with the full range of diagnostic and treatment options available for reproductive health conditions. Those options, as well as waiting times and potential outcomes of surgical procedures and non-invasive alternatives, should be communicated to patients as a matter of course to allow informed, shared decision making. The NHS should identify and address any regional disparities in the availability of particular treatments and support. (Paragraph 66) 74 Pain of investigation

The NHS is failing many patients who undergo routine reproductive healthcare procedures such as hysteroscopy, IUD fitting and cervical screening. In too many cases, we find that a duty of care from gynaecologists and other medical practitioners is absent. Women are being pressured into enduring severe pain and find that they are ignored or belittled by those charged with their care when they cannot. The Women’s Health Strategy for England does not sufficiently prioritise challenging this behaviour.

The NHS must do more to monitor and enforce protocols governing procedures such hysteroscopy, IUD fitting and cervical screening and ensure that they are underpinned by informed consent and are trauma-informed. A risk assessment that allows a patient to make an informed choice on the recommended procedure should be undertaken as standard, taking account of any previous history of undergoing related procedures. This should also include consideration of the patient’s mental and physical preparedness for a penetrative procedure, particularly in cases where the individual has not had or recently had penetrative sex. The full range of options on pain relief, including anaesthesia, should be considered and a clear commitment made that if the level of pain during the procedure is unbearable, that procedure will be halted and a separate appointment will be made. As membership bodies, the Royal College of Obstetricians and Gynaecologists and the Royal College of General Practitioners should be doing far more to ensure their members adhere to guidelines and best practice.

Concerns about painful procedures have been raised for years with little sign of progress. We recommend the NHS collects data on whether guidelines for hysteroscopy, IUD fittings and other potentially painful gynaecological procedures are being adhered to. That data must include surveys of patient experience. Without the pressure of having this information captured we are sceptical there will be the necessary drive to improve the level of care.

Reducing the pain women experience during invasive procedures should be made a key performance indicator for the Women’s Health Strategy for England. (Paragraph 82) 75 Effect on mental health

Individuals with a suspected or diagnosed reproductive health condition should be offered specialist mental health support from when they start to report distressing and/or painful symptoms and throughout diagnosis and treatment. Delays at each step of the process and a lack of treatment options make mental health support all the more essential.

Women’s health hubs situated in areas where access to appropriate mental health services is lacking should be commissioned to include mental health support as part of their core specification.

NHS England should implement policies to ensure there are separate spaces for patients undergoing investigations or treatment for reproductive health conditions and obstetrics patients. (Paragraph 91) Waiting lists

The use of terminology such as ‘benign gynaecology’ downplays the impact of reproductive health conditions and risks de-prioritising them for treatment that could significantly improve patients’ health and lives.

NHS England should cease to use the term benign in relation to reproductive ill health. The NHS should work with stakeholders to develop a way to describe these conditions that more accurately reflects the serious impact they can have on people’s lives. This should include a wider discussion about what treatments take precedence for surgery and the steps necessary to ensure that chronic conditions primarily affecting women, such as endometriosis, are appropriately prioritised. This re-prioritisation is required to address the fact that gynaecology waiting lists have grown at a faster pace than any other specialty since the pandemic.

Measures to reduce waiting lists for elective surgery should prioritise areas where waiting lists are longest and disparities greatest. The NHS should provide financial support to women to allow them to travel further to access care earlier.

Data and analysis must improve. The NHS should collect data on where there are delays in the system, where women are being referred from, which could highlight areas where community provision is lacking, which groups of women are most affected by delays, to allow better understanding of health inequalities, how many women are waiting for more than one type of treatment, and the satisfaction and outcomes of follow-ups, including which women and girls access this pathway. (Paragraph 99) 76 Period poverty

More than half of the population will experience menstruation yet women and girls are financially disadvantaged by having to pay for essential products without which they cannot leave their homes, work or attend education. This is an unfair burden, not least given the existing context of a gender pay gap and a cost of living crisis which disproportionately affected women. For those with conditions such as heavy bleeding, the cost is higher and products are not always effective, further affecting their mental health. Existing period and incontinence product schemes are inadequate.

The Government should review existing period and incontinence product schemes alongside the burden of need. We recommend the Government considers the merits of legislating for free provision for particular groups such as children, students, people seeking asylum and those in receipt of benefits. Products that are appropriate for heavy bleeding and other urogynaecological conditions should be available on free prescription. As part of their corporate social responsibility we call on the major manufacturers of period and incontinence products to help fund the provision of those products. The introduction of such policies should be supported by a public awareness campaign. (Paragraph 103) Workplace support

Workplaces must be incentivised by the Government to have strategies in place to support women experiencing reproductive ill health. The availability of flexible working patterns, a workplace that provides easy access to period products, and time off to attend appointments are just some of the measures that can better support women at work. While some employers have recognised the benefits of policies such as paid leave for fertility treatment, pregnancy loss, menopause symptoms, and menstruation-related issues, there is not consistency across employers and sectors. The Employment Rights Bill is a good opportunity to address these concerns.

Clause 26 of the Employment Rights Bill should be amended to make clear that supporting women with reproductive health conditions falls under the definition of advancing gender equality. (Paragraph 111) 77 Violence against women and girls

The Government’s plans for the Women’s Health Strategy for England should include support and guidance for women who have conceived as a result of rape, and for children born as a result of rape. This should include tailored information on the NHS website, including on rape-induced gynaecological issues. (Paragraph 113) Training and standards

The Department of Health and Social Care should set out plans to improve the accessibility and take up of professional development in women’s reproductive health conditions among practitioners in primary care. Those plans should include allocating increased funding for training on reproductive health conditions and protected time for GPs to undertake that training.

The approval of the anti-mullarian hormone blood test as another tool to assist in the diagnosis of polycycstic ovary syndrome is a welcome development. NHS England should evaluate the merits of rolling it out nationally as a matter of priority.

GPs face difficulties diagnosing complicated reproductive healthcare conditions which may present with a variety of symptoms. They face workplace pressures, have short consultation times, and can struggle to access training and guidance. While it is positive to see that medical guidelines and assessments are being updated, further work on professional standards is required if the invalidation that women have reported during this inquiry is to be adequately addressed.

The annual GP appraisal process should be strengthened to include a specific performance indicator on the diagnosis and treatment of women’s reproductive health conditions, including intersectional considerations. That indicator should include patient experience.

NHS Digital should collect data on how many hours of training primary care practitioners undergo annually in the field of women’s reproductive health. (Paragraph 131) Medical education

Training on women’s reproductive health in medical schools needs to be improved. Healthcare practitioners are graduating without sufficient knowledge of the conditions that may affect women over their lifetime . 78 Without that education, healthcare professionals are less likely to choose women’s health as a specialty and less able to support women during their interactions with the health service.

The Government should work with the RCOG, RCGP and the GMC to improve the teaching of women’s health at undergraduate level and ensure it is an integral part of medical education for all those seeking a career in healthcare. As part of that work the Government should consider how to better incentivise healthcare professionals to specialise in women’s reproductive health, including making obstetrics and gynaecology a mandatory rotation. This is necessary to address current shortages in this area and to tackle the long waiting lists for gynaecological care. The merits of using of the quality and outcomes framework (QOF) or commissioning for quality and innovation (CQUIN) indicators should be part of its consideration of potential incentives.

Primary care practitioners should be trained to use women’s common interactions with the healthcare system, such as cervical screening appointments, ante- and post-natal care checks and visits to STI clinics, as an opportunity to pick up hidden health concerns relating to reproductive health. (Paragraph 139) Medical guidelines and standards

The Department of Health and Social Care and NHS England should commission NICE to develop comprehensive guidelines for all reproductive health conditions. Those guidelines should be communicated to GPs and made accessible to patients through the NHS website to allow informed patient-GP discussions. Adherence to these guidelines by medical practitioners and any barriers to following them must be monitored, including their usefulness to patients. (Paragraph 145) A fragmented commissioning system

The expansion of the women’s health hub model has the potential to be a positive step towards providing the joined-up care and commissioning needed to effectively support women experiencing reproductive health conditions. However, the women’s health hub model exists within a healthcare system which has significant commissioning, funding, workforce and expertise problems, particularly in the area of reproductive health. There are also risks that those not yet served by hubs, or with limited access such as in rural areas, will be disadvantaged. (Paragraph 159) 79

It is positive to hear that many of the leaders in the ICBs are focusing their hubs on disadvantaged groups. While local ownership, management and decentralisation of the hubs is important to meet local needs, regular national-level evaluations are also required to ensure that the hubs are providing the intended additional benefits and are not just a rebadging of existing services. It disappointing, for example, that it is rare for hubs to offer multiple services at the same time—something we view as a key benefit of the hub model.

We find that women’s health hubs have proven the concept that they can deliver improvements to women’s healthcare. The Government must now allocate long-term, ring-fenced funding and resource to embed the hub model and further support its development. That development should include increased provision of ultrasound facilities within hubs. Funding should be accompanied by a break-down of how it will be used and which services will be available in each area.

Integrated care boards must ensure that their hubs meet the specific demographic needs of their populations, particularly accounting for religious and cultural considerations.

There remains a postcode lottery of access in primary care to long-acting reversible contraception. As a result, some women are having to seek care from secondary or community services, leading to delays in treatment and an unnecessary burden on secondary care. This is a preventable cost to the system and to the wellbeing of the individual. While the establishment of women’s health hubs may go some way to addressing this concern, in areas where hubs are not established other solutions will be required.

The Government should develop a funding and training strategy to address the lack of LARC provision in general practice, particularly in those areas not covered by a women’s health hub. This should include an assessment of whether the current fee structure is fit for purpose. (Paragraph 164) Research

Finding the causes of women’s reproductive health conditions and new and better diagnostic tools and treatments for them cannot happen without sufficient research, which includes all groups of women and others affected, at different life stages. Yet research remains lacking because it is not adequately prioritised by funders or commissioners and is not incentivised enough in clinical academia. While these issues are recognised by the Women’s Health Strategy for England and some positive work is underway, the Government needs to be more ambitious and more targeted approaches are needed. (Paragraph 180) 80

The Women’s Health Strategy for England should be updated to include priorities for specific, common conditions. We recommend the Government commits to reducing waiting times for an endometriosis diagnosis to less than two years by the end of this Parliament and to improved understanding, diagnosis and treatment of heavy menstrual bleeding over the same period.

The Government should allocate increased, ringfenced funding to support research into the causes, diagnosis and treatment of women’s reproductive health conditions. While increased funding will in itself attract more researchers to this area, NHS England and research bodies should also consider what steps they can take to increase interest among clinical academia. (Paragraph 182) Implementing the Women’s Health Strategy for England

The Government should publish an implementation plan for the Women’s Health Strategy for England detailing timelines, costs and resource. (Paragraph 184) Funding

We call on the Government to recognise the financial benefits of increased investment in early diagnosis and treatment of women’s reproductive health conditions and provide the additional funding necessary to truly transform the support available to the millions of women affected by reproductive ill health in this country. (Paragraph 187) 81