New research by Jo’s Cercival Cancer Trust has found that two thirds of women with a physical disability are experiencing barriers to cervical screenings.
In the last issue of Enable we spoke to one woman with a learning disability about accessing smear tests, and why we need to remove the barriers to cervical screenings.
The charity surveyed 335 women who live with a physical disability, uncovering significant inequalities in the opportunities available to women. Many women reported not having had a test for years, some ever or since they became disabled.
Almost two thirds of respondents said they have been unable to attend a test as a result of their disability, facing both resistance and stigma along the way.
The charity has concerns that a lack of equipment, clear policies and, in some places, substandard care is putting disabled women at an increased risk of cervical cancer.
Robert Music, chief executive of Jo’s Cervical Cancer Trust, says: “I am shocked by the inequality that exists in accessing cervical screening across the UK.
“It is not acceptable that women with a physical disability are often faced with additional hurdles or even being denied access to this potentially lifesaving test.
“It is worrying to see the level of stigma that exists regarding sex and disability and this must change.”
Of the respondents, 88 per cent said they feel it is harder for women with a disability to attend cervical screenings, and almost half have purposely chosen not to attend due to a previous bad experience related to their disability. Women also voiced concerns about how people might react to their disability.
In the UK, there are around 18 million people with a disability or long-term health condition – over half of women with a disability report a mobility impairment.
The new research found that essential equipment some women required to access a test at their GP is not readily available. This includes hoists or height-adjustable beds.
Inconsistency in the provision of home visits or referrals to alternative, accessible venues was also highlighted as a cause for concern.
Almost a quarter of respondents said they are unable to leave the house, but their GP doesn’t offer home visits. Just three per cent could confidently say that their GP would provide this service.
Jo Moss, who has ME/CFS and Fibromyalgia, tried to access cervical screening for eight years before finally receiving one. Jo struggles to sit or stand for five minutes without pain or dizziness, but assumed home options would be an option.
“It shouldn’t have taken me eight years to finally have the test nor should it be the case that you can’t access screening because of your condition or disability,” stresses Jo.
“I assumed that because I was able to get home appointments for injections or dental care that it would be just as easy to organise a home visit for screening.
“I was wrong. It’s so important that we make this test accessible to everyone and raise awareness of the barriers that are preventing us from accessing it.”
Misunderstanding and stigma around disability are also creating barriers to cervical screening for women with a physical disability. One in five women told the charity that it had been assumed they are not sexually active because of their disability.
This unfair and often inaccurate assumption is damaging emotionally, as well as putting women’s health at risk.
Women reported being discouraged from screening and being told it was not possible to access. Some even said that they have been encouraged to sign waivers saying they did not want a screening.
Misunderstanding of their needs could be a large part of this problem: 40 per cent of women feel their GPs or nurses don’t understand their needs or take them seriously, and 45 per cent said they feel like their needs have been forgotten.
The charity is now calling for GP practices to review their policies and practice, along with training and inspections to address adjustments for women with a physical disability.
Dr Hannah Barham-Brown is a disability and gender equity advocate and GP Trainee, she says: “The challenging practicalities of providing healthcare for disabled people mean that basic access to services such as cervical screening is sometimes being denied.
“We have an under-resourced and understaffed health service, however clinicians must be funded and supported in order to provide the care that patients deserve.”
The charity also calling for research looking at the most effective way of offering cervical screening to women with a physical disability, including the feasibility of HPV self-sampling.
Cervical screening prevents 75 per cent of cervical cancers from developing, but currently screening uptake in the UK is at a 21-year low. Removing barriers for women with a physical disability is a big step towards making this figure 100 per cent.