Last year, at the age of 53, Louise had her first smear test.
Louise, who has a mild learning disability, grew up in an institution where she was sexually abused and consequently, it takes her a long time to build up trust with the people around her. She had been booked in for two cervical screening appointments in the past year, but withdrew in a panic.
It was only on her third attempt, with the help and patience of support staff, that she was finally able to access the potentially life-saving screening – 28 years later than advised.
Sadly, Louise’s story is far from unusual. The latest data from NHS Digital indicates that in 2018, thousands of women with learning disabilities struggled to access the cancer screening programmes to which they’re entitled.
The latest figures show that in 2017-18, patients with learning disabilities had significantly lower rates of cancer screening than patients without a learning disability. The difference was most pronounced in the case of cervical screening, with only 31.2% of patients with learning disabilities having a cervical screened compared to 73.2% of women without a learning disability.
The data provides a small insight into why women with learning disabilities currently have a life expectancy 18 years lower than women who did not.
Outdated misconceptions about women with learning disabilities, plus misunderstanding about cervical screening, may be one reason for the gap, says Dave Robinson from learning disabilities charity Dimensions.
“For example, there is an assumption within our society that women with learning disabilities aren’t sexually active. Whilst this is absolutely not the case, it is also recommended that women should have the screening if they are sexually active or not,” he tells HuffPost UK.
“Women with learning disabilities are at exposed to the same kind of risks as other women and have a right to be kept as safe as possible.”
Attendance for breast screening is also low among women with learning disabilities. Just half (52.5%) received a breast cancer screening in 2017-18, compared to 68% of those patients without a learning disability.
Dawn, 57, attended her first breast screening exam with her support worker, Leo Snipe, two years ago. At the appointment, radiographers failed to explain what was going to happen during the mammogram or why they were doing it, says Snipe, meaning when they asked Dawn to place her breast in the machine she tried to run away. “I was scared,” Dawn tells HuffPost UK over the phone.
Another patient who Snipe supports, Liz, 54, also had a traumatic experience when she attended her first breast screening two years ago. Liz became stressed, anxious and frightened when Snipe was not taken into the room with her, and eventually resisted doctors. “There were far too many people in the room,” says Snipe, who was finally called in to help. “[The procedure] needed to be explained in simpler terms. If you’re not familiar with it, it’s frightening.”
While Louise, Dawn and Liz’s screenings did not run smoothly, many women do not even make it into the room for an appointment. One of the biggest barriers preventing women accessing screening hinges on their carer’s understanding of consent to the procedure, Robinson explains.
Under the Mental Capacity Act, if a women is assessed as having the mental capacity to weigh up the pros and cons of the procedure, it is her choice to consent to having it – or deciding not to.
If the women is assessed as not having the capacity, then a ‘best interest decision’ is made on her behalf. But, this doesn’t always lead to a screening. For some women, their carers, GPs or support workers may consider screening to be too traumatic for them, and they will be opted out.
“Unfortunately, for many women with learning disabilities, they do not even get to the point of the Capacity Assessment being made,” Robinson says.
“It has not been unusual for a GP or the person’s carers or supporters just to be of the opinion at the outset that screening is just not right, useful or appropriate for a woman with learning disability, without that decision being subject to a formal assessment process.”
For things to improve, Robinson says, we need to give GPs and their teams enough time and training so they are able to communicate clearly and confidently to women with learning disabilities, their families and support workers, and establish the best way to help them as individuals.
It took months to prepare Louise for cervical screening – she needed to understand the instruments that would be used, the exact details of the process, and she also needed to choose the nurse who would perform it.
Kerry, a member of Louise’s support team, explains: “The first two unsuccessful attempts made us even more determined to help Louise with the procedure. When we drilled down to why she refused, we soon understood it was her fear of the unknown.”
But with some extra time, the team were able to help Louise feel in control of the process. For an extra moral boost, during her third attempt at screening, they also pinned a picture of David Beckham – her celebrity crush – to the ceiling during the procedure. “It’s not in the normal book of reasonable adjustments,” says Kerry, “but it certainly did the trick!”