Only 19% of women with learning disabilities have had a recent cervical screening, compared to 73% of the general population
Betty has a mild learning disability and wants to have a smear test. However, she has not yet been able to, and several attempts have led to her reacting with terror at the last minute. Her education around consenting sex has been protective and limited because of her learning difficulties, particularly as someone not currently in a relationship, which makes it harder for her care team to communicate aspects of the narrative. But this doesn’t change the fact that Betty understands the importance of the screening and wants to be tested. So far, the team have tried numerous things to ease Betty’s discomfort, and they will keep trying.
Betty’s story is not uncommon. In fact, only 19% of women with learning disabilities have had a recent cervical screening, compared to 73% of the general population, report Dimensions, a charity that supports people with learning difficulties.
Reading this figure, it’s hard not to be shocked by the huge disparity between women and women with learning disabilities. Yet despite extensive campaigning efforts, there are so many women missing out on vital screenings.
As a feminist, with chronic health conditions of my own, I felt ashamed that I was so clueless about such an important issue facing the rights of women across the UK. Everyone should have equal access to health care, but there’s more to equality than being able to book the same appointment.
After talking to just a few people close to the issue, it was clear that, to many, these statistics weren’t surprising at all. And it all comes back to long-fought and fundamental barriers that disabled women still face in the UK. As Sophie Walker, Leader of the Women’s Equality Party, tells Stylist, “It is appalling that so few women with learning disabilities received this potentially life-saving screening, and an indictment of the ways disabled women are rendered invisible when they do not meet societies’ expectations of womanhood.
“As the mother of a disabled girl, I know how it feels to have to fight our male-centred healthcare system to recognise the needs of women, particularly those women at the margins.”
Part of the challenge lies in education. High-risk human papillomavirus, otherwise known as HPV, is the virus which causes most cervical cancer cases. HPV is sexually transmitted and is common amongst sexually active adults, although it won’t develop into cancer for the majority of women.
However, historic and wildly unfounded assumptions that women with learning disabilities aren’t sexually active are still far too prominent in 2018. These painful and damaging perceptions that dismiss the disabled as not ‘attractive’ or ‘sexy’ are affecting access to healthcare, due to smear tests being over looked as a result. These are stereotypes that we all have the power to challenge. The lack of intimate conversations was one of the factors that meant Louise only had her first cervical screening at the age of 53. Louise has a mild learning disability and receives 10 hours a week of support from Dimensions to help her with day-to-day things.
Louise is very content and happy with her long-term boyfriend. However, she still suffers consequences as a result of trauma in her earlier years. Having grown up in an institution where she suffered sexual abuse, it takes Louise a long time to build up trust with the people around her. As a result of this, there are very few support and health workers that could possibly have a conversation of an intimate nature with her.
But a number of changes to her health and issues with her contraception led her GP surgery to begin talking to her about a cervical screening. Due to Louise’s need for privacy, just two members of her support team, and her surgery nurse were party to the conversations that followed. It took months to prepare Louise for the procedure. Her learning disability required her to understand the exact details of the process, and finding a nurse that she was comfortable with to perform it. To help with this, her support team candidly shared their own health experiences, to help her understand the critical need for cervical screenings, and what can go wrong if you don’t get checked.
It took three goes, with Louise withdrawing in panic when it came to the procedure. The team waited until Louise voiced that she was ready to try again. On the third occasion, her support team approached the test a little differently, and pinned a picture of her idol David Beckham to the ceiling during the procedure.
While their successful method may not have been conventional, it shows the power of human kindness and just how important the standard of support offered by the care team is to ensuring accessibility.
Kerry, a member of Louise’s support team, adds, “Louise had full choice and control over the process, and the timescale. We worked with the excellent surgery staff at a pace and in a way that was comfortable for her.”
Women’s access to health screenings are a legal right, not a privilege. Under the Equality Act, GPs are required to make ‘reasonable adjustments’ for their patients with a learning disability to access their healthcare in the same way anyone else would. However, in practice this isn’t always the case. Half of GPs said a lack of training on how to make reasonable adjustments was stopping them from meeting the individual needs of patients with learning disabilities, and Amy Dissanayake, a GP from West Sussex, agrees.
“Everybody who is 14 or older with a learning disability is entitled to an annual health check,” she explains. “This is a great opportunity to become familiar with the surgery and the staff so when it comes to tests such as smears [aged 25 and over], it feels a bit less daunting…
“We need to help all staff in general practice become familiar with reasonable adjustments that can be made, and more training is an excellent way of doing this. It is also vital that we support families and carers to make sure that patients can attend their appointments and that somebody who knows them well joins them.”
Sadly, we know there is a huge health inequality for people with learning disabilities. It’s evident that shock when seeing this problem in black and white is also part of the problem. For awareness campaigns to really be successful, they need to be completely intersectional. It’s easy to advocate for some women’s rights, but to be totally inclusive we need to be aware of barriers like this facing other women and tailor our movements accordingly.