Women with physical disabilities being denied access to cervical screening

• Two thirds of women with a physical disability have been unable to attend screening because of their disability
• Half have not attended due to a previous bad experience related to their disability or worry about how people might react
• Stigma is pronounced as 1 in 5 have been assumed not to be sexually active by their GP

New research by Jo’s Cervical Cancer Trust has found that women with physical disabilities are struggling to access potentially-life saving cervical screening. Two thirds (63%) say they have been unable to attend as a result of their disability with many facing resistance and stigma along the way. The charity is concerned that a lack of equipment, clear policies and, in parts of the country, substandard care is putting this group at an increased risk of cervical cancer.

The charity surveyed 335 women living with a physical disability and uncovered significant inequalities and wide variation in the opportunities available to women. Many women reported not having had a test for many years, some since they became disabled. 

88% said they feel it is harder for women with a disability to attend cervical screening, while half (49%) have purposely chosen not to attend due to a previous bad experience related to their disability or worry about how people might react.  

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 mobility impairment .

In its new report Jo’s Cervical Cancer Trust has found that essential equipment, which some women need to access a test at their GP, such as hoists or height-adjustable beds are not readily available. Just 1% of respondents said that their GP surgery provides a hoist, yet 23% say they need one to get onto the examination bed.

Inconsistency in provision of home visits or referrals to alternative, accessible venues was also found. 22% said that they are unable to leave the house but their GP surgery doesn’t offer home visits with only 3% confident that their GP surgery provides a home visit. 

A worrying level of misunderstanding and stigma around disability was discovered as one in five women said it has been assumed that they are not sexually active because of their disability. 

Women reported being discouraged from screening, being told it was not possible to access and shockingly some even said they have been encouraged to sign waivers saying they did not want screening.

40% feel GPs or nurses don’t understand their needs or take them seriously. Half (45%) of those questioned said they feel like their needs have been forgotten.

The charity is calling for GP practices to review their policies and practice, along with training and inspections to address adjustments for women with a wide range of physical disabilities. It is further calling for research looking at the most effective way of offering cervical screening to women with a physical disability, including feasibility of HPV self-sampling.

Robert Music, Chief Executive of Jo’s Cervical Cancer Trust: “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.” 

There is a duty on service providers to make reasonable adjustments so that people with disabilities are not disadvantaged compared to people without disabilities, yet the charity has found women with physical disabilities are sometimes being prevented from accessing basic healthcare.

Jo Moss has ME/CFS and Fibromyalgia and tried to access cervical screening for eight years before finally receiving one:  

“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. My condition means that I cannot sit or stand for more than five minutes without pain or dizziness and I am therefore unable to leave my bed. 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.”

Cervical screening prevents 75% of cervical cancers from developing yet screening uptake in the UK is at a 21-year low. 

Dr Hannah Barham-Brown Disability and Gender Equity Advocate, GP Trainee, Speaker and Media Commentator: 

“This report represents a vital area of work that is all too often forgotten. 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.”  

Survey respondent: “GP doesn’t have a mobile hoist. When I asked to be referred on to somewhere that does, he fobbed me off, saying that it wasn’t worth it as I’d probably never get this type of cancer. I wasn’t worth the extra effort I felt.”

Survey respondent: “I am unable to leave my bed. I have been denied cervical screening since 1994. I have been repeatedly asked to sign a waiver saying that I do not wish to receive cervical screening. I have not signed a waiver because I would like to receive cervical screening.”

Ends

For further comment, interviews or case studies please contact [email protected] or call 020 3096 8000 / 07772 290064

Notes to editors

• Visit the full report at www.jostrust.org.uk/invisible
• 335 women took part in an online survey and five women took part in in-depth semi-structured interviews. Those who participated represented a wide range of conditions and disabilities, including spinal muscular atrophy, Ehlers-Danlos syndrome, paraplegia, myalgic encephalomyelitis and cerebral palsy. The research was conducted between 13th March-17th May 2019.