Women with learning disabilities far less likely to receive cervical screening in Leeds

NHS Digital data shows that of 207 women with registered learning disabilities who were eligible for a cervical screening in the NHS Leeds CCG area, just 68 received the health check in 2019-20.

That's an uptake of 33 per cent, compared to 69 per cent among eligible women who did not have a disability.

However, the true number of women who were both eligible for their screening and who received a test may be higher, as only a small proportion of patients in the CCG area were covered in this data.

Cervical cancer charity Jo's Trust says a lack of accessible information for people with disabilities and awareness among some healthcare professionals are just some of the potential reasons fuelling low uptake nationally.

A spokesperson for NHS Leeds Clinical Commissioning Group said: "As part of our ongoing work to address health inequalities, the CCG has prioritised healthcare for people with learning disabilities.

"A vital part of this work is the annual health check. This includes a physical check-up, blood and urine tests, a discussion about staying well, checking on any long term conditions and also checking that vaccinations and screening – including cervical screening – are up to date.

"We recognise that for people with a learning disability, uptake is generally low for all screening programmes and is most marked in cervical screening.

"We are working with health and care colleagues from a range of NHS, council, learning disability and cancer organisations so that we can improve the support, communication and training available for care providers, patients and families.

"In addition to cervical screening tests, everyone on a GP's learning disability register should be invited to book a health check every year. The checks are really important as they can uncover hidden health conditions that need to be treated.

"The pandemic has resulted in some reluctance to have these checks, but we’d encourage everyone to make an appointment when they’re invited. Initial consultations will usually be by phone or video. If patients are stable and well, physical checks may be postponed but a face to face appointment will be arranged if necessary. "

Women aged 25 to 49 are invited for cervical screening every three years, while those aged 50 to 64 receive invitations every five years.

Cervical screening requires a test that looks for changes in the cells of the cervix which could develop into cancer.

A small sample of cells is taken from the cervix using a soft brush.

The figures exclude smear tests which were inadequate, meaning the cells could not be read properly to give a result.

Across England, only 34 per cent of women with learning disabilities received the potentially life-saving health check last year, compared to 72 per cent of other women who were eligible.

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.

"There is not enough accessible information about smear tests out there," she said.

"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."

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

She added: "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."

She 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.

The NHS figures 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 eligible for a cervical screening.

But 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.

She added: "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."

Dr Sam Browning, Clinical Lead for Learning Disabilities at NHS Leeds Clinical Commissioning Group said: “If you or someone you care for is invited for a health check or a screening appointment, please ensure you attend.

"You will be seen in a safe environment but if you have any concerns or questions about your appointment, please speak to your practice.”

How to book a cervical screening:

The NHS website states: "You will be sent an invitation letter in the post when it's time to book your cervical screening appointment.

"Your letter will tell you where you can go for cervical screening and how to book.

"Most cervical screening is done in a GP surgery by a female nurse or doctor.

"In some parts of England, you may be able to go to a local sexual health clinic instead.

"Call your GP surgery to book an appointment with them. You might be able to book the appointment online."

If you need information or support please visit www.jostrust.org.uk