Disabled women face significant barriers to cervical screening. Could self-testing finally close the gap? Editor Melissa Holmes spoke to disability activist Samantha Renke and Professor Sue Sherman about their important research that’s helping improve access
Cervical screening is a vital tool in helping pick up abnormalities that could lead to cancer in women and people with a cervix. Previously referred to as a smear test, cervical screening can detect HPV, a virus which can lead to cancer. The screening programme prevents more than seven in 10 cervical cancers. But for numerous reasons – including worries over pain and discomfort, embarrassment, or bad experiences with screening in the past – one in three women don’t attend their routine appointments.
For disabled women, cervical screening can be fraught with additional challenges. Samantha Renke’s worst experience involved being lifted on to the examination bed by her PA, with multiple members of staff present while she underwent the screening. She says: “I didn’t feel like a patient. I felt like a medical curiosity.”
Samantha, a disability advocate and Enable columnist, has spent the last four years as lead Patient and Public Involvement (PPI) consultant on research into disabled women’s experiences of cervical screening. The research canvassed the views of more than 1,400 people who’ve had difficulties accessing cervical screening, and Samantha found the work validated her own experiences.
DISCONNECT
“Some people had really horrific treatment, and that never ceases to upset me or shock me,” reveals Samantha. “And there seemed to be a real disconnect between the good practice clinicians [in another survey] thought they were offering, and what the survey participants said they experienced.”
Because, not only do disabled people face major barriers when it comes to physically accessing the doctor’s surgery and examination room (let alone arranging transport to the surgery, and booking an appointment that aligns with your PA’s schedule), they also face attitudinal barriers.
EYE-OPENING
Research lead Professor Sue Sherman of the University of Sheffield shares: “The thing I was most taken aback by was the attitudinal findings. This doesn’t apply to all healthcare providers, but the survey participants reported some poor experiences with healthcare providers where the medical professional didn’t understand the disability, and didn’t treat the patient as the expert in their own condition. They perhaps were dismissive of reports of pain, or weren’t willing to try different solutions. Those aspects were a bit of an eye-opener.”
This lack of awareness can contribute to an environment where patients feel undervalued and unheard – leading to more missed appointments and serious health issues, like abnormal cervical cells, being missed. More than half of participants reported delaying, missing, or never attending screening, with most of those indicating that the main reason was disability-related factors.
VULNERABLE
What’s more, when you’re in such a vulnerable position, it can be hard to speak up and advocate for your own needs. Especially when, as Samantha explains: “We don’t encourage disabled people, particularly disabled women, to speak up.” She also points out that many see medical professionals “almost in a godly way, and we’re not given the go ahead to challenge them.”
When it comes to accessing healthcare like cervical screening, there are lots of intersectional barriers to consider, such as religion and culture, the infantilisation of disabled people, and some professionals’ belief that disabled women aren’t sexually active.
“It comes down to not viewing disabled people as necessarily people, not seeing them as having autonomy or bodily autonomy, not seeing them as desirable, and not seeing them as deserving of love, marriage or children.” Samantha, who is an ambassador for The Eve Appeal’s Get Lippy campaign, adds: “A whole systemic and institutional unravelling of ableist rhetoric and narratives within society as a whole is needed.”
SELF-TESTING
However, things are beginning to change. This year, the NHS is rolling out self-testing at home for cervical screening. Self-screening kits are starting to be sent to people who are at least six months overdue cervical screening, or who’ve never been screened.
The swab test is like a long cotton bud that you insert into your vagina, before posting back for testing. If any abnormalities are found, you’ll still need to attend a medical setting for further testing, but self-testing can remove initial embarrassment and worry over pain and discomfort for many women, as well as being more accessible to many disabled women.
Self-testing isn’t a silver bullet, but it offers a degree of autonomy that traditional methods might lack. As Sue highlights: “What the research tells us is that there isn’t one solution for everybody. People want choice if it’s available.”
The concept of a ‘screening passport’ also emerged from the study, highlighting the potential benefit of recording specific needs and adjustments – reducing the onus on patients to continually advocate for themselves during every medical interaction. Sue also highlights other practical changes, such as training sample-takers in disability awareness and accommodating diverse needs within healthcare settings.
What would Samantha say to a disabled woman who is put off screening because she’s frightened of the process, or it feels inaccessible? “Your health comes first – nothing is worth taking the risk,” she adds. She recommends people call ahead, ask questions, request a longer appointment, and get your GP to be part of the solution.
“A little bit of discomfort is worth it in the long-term.” She says disabled women need to understand that: “Your needs are not extra. Your needs are not extreme. And don’t let anyone make you feel that way.”
