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Outdated misconceptions about women with learning disabilities, plus misunderstanding about cervical screening, may be one reason for the gap, says Dave Robinson from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.