"We need women’s voices and experiences to be centred and amplified": our response to the Women's Health Strategy consultation

The Department of Health and Social Care recently held a consultation period, seeking the views of individuals and organisations to help inform the development of the government’s Women’s Health Strategy. We were really pleased to submit a 10-page response, sharing our expertise and the experiences of our community.  

This was a unique opportunity to tell the government the most pressing challenges facing cervical health right now, and to help shape future health policy to improve the gaps and barriers that we encounter. We are hugely grateful to the amazing community of women who engage with us, and share their experiences and stories, and for this opportunity to amplify their voices.  

Below are some of the points we raised. 

HPV education and understanding  

80% of people will have HPV at some point in their lives and in the majority of cases the body will clear the infection. In some cases, it can cause cells to change, and sometimes these can develop into cervical cancer. Cervical screening can help prevent cervical cancer, and across most of the UK HPV Primary Screening is used as the first test on samples.  

There is a lot of confusion and stigma around HPV, and our research shows that 1 in 2 did not know what it was before they were diagnosed. It is also one of the most popular topics on our Helpline with callers who are scared, anxious and confused about what it means to have HPV.  

We want to see far greater education around HPV at secondary schools, at the same time children are receiving their HPV vaccines. This will help tackle misinformation, address some of the stigma surrounding HPV and provide an opportunity to deliver important messages about cervical screening.  

Awareness of and access to cervical screening 

Cervical screening is the best protection against cervical cancer, and prevents 7 in 10 incidences. However more than 1 in 4 do not attend when invited and this number is higher among some ages, locations and groups. 

Women need to be supported through screening, with their individual needs listened to. In our consultation response, we call for a life course approach, as there can be significant differences in experiences; from younger women attending their first screening to those who are post-menopause.  

There are a wide range of barriers, inequalities, and stigma faced by different groups of women. For example:   

• 40% of lesbian and bisexual women have been told that they don’t need cervical screening  
• Disabled women face assumptions about sex and intimacy, with some being told they are not at risk of cervical cancer and that they don't need cervical screening. 
• Physical barriers prevent some disabled women from attending appointments, with some GP surgeries lacking equipment like hoists. 
• 72% of women who have experienced sexual violence have delayed cervical screening or not attended, because of their experience.
• 56.1% of women from Black, Asian and minority ethnic communities report delaying an invitation to screening.
• Areas of deprivation have lower levels of cervical screening attendance compared to more affluent areas.  

We highlighted the need for those involved in delivering, commissioning or promoting cervical screening to be aware of the many barriers that exist. A ‘one size fits all’ approach does not work, and it is crucial that healthcare professionals and policy makers recognise the depth and variety of obstacles faced by women accessing screening, rather than suggesting that the procedure is quick and simple for all.  We also want to see far greater progress on HPV self-sampling which allows women to - literally - take the test into their own hands. 

Diagnosis and treatment 

 Each year, around 220,000 women will be told they have cell changes, and many will be treated to prevent them developing into cervical cancer. Despite this, there is very little research into the physical and psychological side effects of treatment for cell changes, and many women tell us that they didn’t have the information or support they needed.  

We raised concern over there being no standardised pathway for cell changes treatment, and no NICE guidelines for the treatment of cervical cancer, which means that different women can have very different experience of treatment.   

Our consultation response emphasised that all women should have the information, confidence and support they need to be able to make informed decisions about their health. There is a need for greater research to enable us to provide this and reduce some of the inequalities that exist in cervical health. We need women’s voices and experiences to be centred and amplified, to ensure that future policy and healthcare plans are truly meeting and fulfilling the needs of all. 

Read the full response >