Women with learning disabilities are half as likely to have had cervical screenings than those without, new analysis of NHS England data by NationalWorld shows.
Fewer than a third of women and people with cervixes who have a learning disability are up to date on the important cancer screenings, while not even one in 20 have been screened in one part of England.
Two leading charities have said the gap is partly due to a “damaging misconception” on the part of GPs presuming women with a learning disability are not sexually active and do not need to be invited to screening.
Nearly all cervical cancers are caused by an infection with certain high-risk types of human papillomavirus (HPV), which is passed on through sexual activity.
As we mark Cervical Cancer Prevention Week, charities including Jo’s Cervical Cancer Trust have urged people to get screened.
Analysis of NHS data shows only 31.5% of women on GP registers with a diagnosed learning disability had been adequately screened as of March 2021, compared with 69.9% for those without learning disabilities.
Women aged between 25 and 49 should be invited for a screening every three years, while those between 50 and 64 are invited every five years. Patients are counted as having been adequately screened if they had one within the last 3.5 or 5.5 years respectively.
Coverage was slightly higher for both groups of women pre-Covid, but still showed a similar gap, with 33.6% of women with disabilities screened as of March 2020, versus 71.8% of those with no learning disabilities.
NHS England’s data collection is designed to “provide information about the key differences in healthcare between people with a learning disability and those without”.
However the GPs participating in the voluntary data collection only cover 56% of patients in England.
The most recent data showed that in Bath and North East Somerset, not even one in 20 women with learning disabilities have been screened for cervical cancer at the participating GPs.
Just 4.5% of those with learning disabilities were up to date with screening, compared to 66.3% for non-disabled women.
However, the GPs that submitted data only accounted for 3% of the area’s patients, with the records showing only one out of 22 learning disabled women captured had been screened.
The Bath and North East Somerset Clinical Commissioning Group (CCG) did not respond to a request for comment.
Next lowest was the Ipswich and East Suffolk CCG, with 16.7% of learning disability patients screened (4% of patients captured by participating GPs) followed by North East Essex CCG at 18% (42% of patients in the area captured).
Why do women with learning disabilities face a health gap?
Dan Scorer, head of policy and public affairs at the learning disability charity Mencap, said women with a learning disability are less likely to have had cervical screenings due to a range of issues.
Previous research identified that GPs assume women with a learning disability are not sexually active and therefore do not need to be invited to screening, he said.
Women with learning disabilities can also suffer from a lack of accessible information and staff appropriately trained to support them, the research showed, while healthcare staff may also be concerned patients do not have the capacity to consent.
“This is one aspect of a big problem around the barriers to healthcare that people with a learning disability face,” Mr Scorer added.
His comments were echoed by Samantha Dixon, chief executive of Jo’s Cervical Cancer Trust, who said cervical screening might be more difficult for various groups, including women with a learning disability.
Again, Ms Dixon said one of the reasons for this is that “many have been told by their healthcare professional that the test isn’t relevant to them, because they’ve been presumed not to be sexually active, which is a damaging misconception”.
She said there is also a need for easy-to-read cervical screening information, and resources targeted at carers, “so that women with a learning disability can be fully informed about what the test involves”.
NHS England did not respond to a request for comment.
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