Just 34% of women with learning disabilities in England are attending smear test appointments

Wednesday, 10th February 2021, 11:43 am
Updated Wednesday, 10th February 2021, 11:43 am
The screening involves taking a sample of cells from the cervix using a soft brush (Photo: Shuhtterstock)

Just a third of women with a learning disability are receiving a vital cervical screening in England, figures show.

Cervical cancer charity Jo’s Trust says that a lack of accessible information for people with disabilities and awareness among some healthcare professionals are among the possible reasons for such a low uptake nationally.

Why the lower uptake?

Women aged between 25 and 49 are invited for a cervical screening every three years, while those aged between 50 and 64 receive an invitation every five years.

The screening involves taking a sample of cells from the cervix using a soft brush, which is then analysed for changes that could develop into cancer.

Data from NHS Digital shows that of 39,371 women with a learning disability who are eligible for a cervical screening, only 13,231 are up to date on their health check.

By comparison, out of all 8,668,300 women who are eligible, a total of 6,220,863 are up to date with their screenings.

This amounts to an update of 72 per cent, compared to just 34 per cent among eligible women with a disability.

The NHS figures also show a wider disparity in cervical screening rates between people with learning disabilities and the general population, than in screening rates for other cancer types, such as breast and bowel.

Imogen Pinnell, health information manager at Jo's Trust, said anxiety around what the test involves, not being able to get a convenient appointment and even past trauma are all potential barriers faced by any woman who is eligible for a cervical screening.

However, she said while it is difficult to pinpoint exact reasons behind a lower uptake among people with learning disabilities, a lack of information in an accessible and understandable format for women in this group is a "particularly significant" factor.

Ms Pinnell said: "There are also assumptions that people with learning disabilities are not having sex and that they are low risk.

"We need to be targeting healthcare professionals who are gatekeepers to the service and help them understand some of the challenges."

“It’s so important”

Ciara Lawrence, who has a learning disability and is a passionate campaigner for charity Mencap, said many women with learning disabilities avoid arranging a screening due to a lack of prior knowledge on the subject.

She said: “There is not enough accessible information about smear tests out there. We want women with learning disabilities to feel that getting a screening isn't scary.

"I also think more women would want to attend if reasonable adjustments were made."

Ms Lawrence, who is also an ambassador for Jo's Trust, has spoken out about her positive experience of getting a cervical screening after putting the health check off for a long time.

She explained: "When I was 25 I didn't feel it was right for me, I was scared and fearful. I was in a relationship but I didn't feel like I was ready.

"Then in 2018, a family member died very young from cancer. She was 48, which is no age. It made me feel that I wanted to get my smear test.

"It's only for a few minutes, and it could save your life. It's so important."

Ms Lawrence added that some health workers are not getting adequate training to communicate with women who have learning disabilities, and give them the care they need.