Currently, the World Health Organisation has a plan to eliminate cervical cancer, but without better support and the removal of existing barriers for disabled women and people with a cervix, this isn’t possible.
In the UK, the HPV vaccine is over 99 per cent effective at preventing pre-cancer cells caused by HPV, these are linked to 70 per cent of cervical cancers. It is also thought that 70 per cent of cervical cancer deaths are prevented through cervical screening in England, but 83 per cent of the deaths that do happen could be avoided if everyone was able to attend their cervical screening appointment regularly.
In 2019, Jo’s Cervical Cancer Trust carried out a research project called We’re Made to Feel Invisible. The research spoke to women with a physical disability about barriers to cervical screening and found that 88 per cent of women in this group find it harder to access or attend cervical screenings. Concerningly, 49 per cent chose not to attend based on a previous bad experience.
“Jo’s vision is a world without cervical cancer but in the meantime, we want to make sure people with a cervix who need help and support – whether it’s because of an HPV diagnosis, cell changes or cervical cancer – can come to us for high quality information and support,” explains Samantha Dixon, chief executive at the charity. “The results of that report are quite shocking I think, this was done before COVID and we want to build on that work in 2023 and look at what progress has been made.”
Tools
The tools we need for early detection and prevention are readily available in the UK, but women and people with a cervix who have a disability are often left out of the conversation.
“We know that the HPV vaccine and cervical screenings are our best tools to preventing cervical cancer in the first place, but we need to make sure that every woman has equal access to them,” stresses Samantha.
“In that same report there’s one woman who needs a hoist and she was told it would take too long and she can’t have a home visit,” adds Samantha. “She felt let down and forgotten and that’s a common theme with the women that we speak to. They feel really frustrated and angry, and quite rightly so because we should be supporting all women to go for such a vital test.”
Recently, the charity has done work in Scotland specifically with people with a learning disability. The uptake of cervical screening tests for this group is just 30 per cent.
“We knew that there was a particular issue there, so we partnered with Enable Scotland and we held a series of focus groups with women and their carers, and we let them tell us what they felt they needed to help them access cervical screenings,” shares Samantha. “They were telling us things like the surgery saying they don’t need to go because it was presumed they weren’t sexually active. We worked with them to co-produce films taking you through the process and these are also available in British Sign Language now.
“We’re pleased with this work but we know we need to build on that and think about how we better support women with a range of disabilities across the UK.”
Dispelling taboos around who needs a cervical screening, reminding GP practices of their duty to provide access and adjustments under the Equality Act, and more research and education around the barriers disabled women and people with a cervix face are all key to improving uptake and increasing prevention.
Prevention
From 23 to 29 January 2023, its Cervical Cancer Prevention Week, providing an opportunity to highlight the need for change.
“The focus in January will be around how in theory we have the tools to dramatically reduce cervical cancer in the future through the HPV vaccine, screening and effective treatments for cell changes, and how with those three tools the World Health Organisation has developed an elimination strategy for cervical cancer,” highlights Samantha. “But we know there are certain groups that are struggling to attend cervical screenings and we’re keen to see more focus placed on how we identify those groups and how we listen to them about barriers.
“For us, awareness weeks aren’t just around reminding people that they need to go to screenings, it’s around making sure all those in decision making roles are really thinking about giving equitable access to all those that need to come for screenings.”
During the week, Jo’s Trust are also launching a piece of research where the charity spoke to around 1,200 healthcare professionals and other people in the cervical screening and vaccination space.
“We want to ask them what the practical barriers currently are, what will stop us from achieving true prevention in the UK?” questions Samantha. “We’ll then be lobbying with politicians and other decision makers to say its great that we have a plan for elimination, but here’s the practical things we need to put in place to make it happen.”
With the right education, training and awareness, cervical cancer deaths could be fully prevented, but before this can happen, disabled women and people with a cervix need to have their voices heard.
Find out how to take part in Cervical Cancer Prevention Week from Jo’s Trust (www.jostrust.org.uk).
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