Sarah Rennie is building up the “bravery” she needs to organise a smear test. The 32-year-old has a muscle-wasting disease, which means she uses a wheelchair and needs twenty-four hour support, and even getting an appointment has been a battle. Her first GP told her she didn’t need a smear as she assumed that, because she’s disabled, Sarah wasn’t sexually active. This year, Rennie asked again about having one but soon realised she faced access problems.
“I had to find the right place [that had a hoist] and go to a pre-appointment to think about the facilities I would need to do it,” she explains. “That just upped my anxiety and meant another day off work.”
A previous experience in which a team of medical staff couldn’t fit her with the contraceptive coil, leaving her unclothed and waiting on the bed, added to Rennie’s anxiety. In the end, she says organising her smear test became such a difficult process that she cancelled it.
Her situation isn’t rare. Disabled women are missing out on potentially life-saving cancer screenings, according to new research by Cancer Research UK and the University of Oxford. The Million Women Study – a national study of women’s health involving more than one million UK women – found women with disabilities are a third less likely to participate in screenings for breast cancer than non-disabled women. It also found disabled women are a quarter less likely to take part in bowel cancer screenings compared to women without disabilities.
It gets worse still if you have multiple disabilities: the study found those with two or more health problems were even less likely to take part in screenings compared to women who have one disability. Women with disabilities that affect eyesight, mobility, or have difficulties doing essentials without help – like showering or dressing – were found to be most likely to miss out.
This is clearly horrendous but as a wheelchair user, I’m not surprised. A smear test – never the easiest process as you lay with your legs in the air – can be a non-starter for women who aren’t able to get themselves onto the bed without help. A mammogram – where you need the ability to position your body into the machine and hold your frame – can be unmanageable for women who can’t stand or have limited upper body strength.
Eleanor Lisney, who uses a power wheelchair and isn’t able to stand unaided, attended a mammogram seven years ago but when she was invited to another breast screening in London last year, decided not to attend.
“I felt bad – guilty – for not going but even though I felt I was risking it, I was reluctant to go,” she says.
Awkwardness and stigma can be the difference between catching cancer early or not. This is sometimes even more the case if you’re disabled
Lisney, 58, worried the breast-screening tests were often in inaccessible “mobile clinics” and knew from her first experience that doing the test sitting in her wheelchair was far from an easy process. “It's difficult to get close enough,” she explains.
This is the second type of cancer screening Lisney has missed because of her disability. She didn’t have a smear test for a decade because she couldn’t access the examining table. “I only got one because I needed an operation and they could do it at the same time,” she says.
It’s true that all people of the relevant age groups are routinely invited for free cancer screenings in the UK but for many disabled women, this isn’t real access: yes, we may be technically invited to a screening but there aren’t necessarily the measures in place that makes it possible to take it up. Like most inequality facing disabled women, our exclusion from cancer screenings largely comes down to the practical stuff – the barriers that exist in all parts of life but non-disabled medics or decision makers rarely spot.
This can be things like the set-up of the mammogram machine that Lisney experienced. But it’s also aspects seemingly unrelated to medical care: say the fact that public transport isn’t all accessible for disabled people or that recent cuts to disability benefits and social care packages mean disabled people are finding it increasingly hard to even get out the house. Notably, the Cancer Research UK study found disabled women who didn’t have access to cars were more likely to miss breast screenings.
We need to start talking about this. When I read the Cancer Research UK findings, what struck me was how rare it is to see these issues even studied. I’ve spoken about it in passing to my GP or with a group of disabled women (and that was at a reproductive rights event) but it’s always done with a hush: an awkward conversation to get over quickly and one that you’re not told any other woman is having.
We know that from low take up of smear tests (at least one in every four women invited for cervical cancer screening in England last year didn’t attend) that awkwardness and stigma can be the difference between catching cancer early or not. This is sometimes even more the case if you’re disabled. Having to talk about the private details of your disability in a setting that already requires exposing the most intimate parts of your body can be a daunting process. If you get a letter in the post telling you you’re due for a mammogram, it’s not hard to see that putting it in a drawer would seem an easier option.
But with more awareness of disabled women’s needs, the easier it will get. The NHS website already notes that “the breast screening unit should advise on whether breast screening is technically possible, and where would be the most appropriate place for her to be screened.” It adds that, “If a woman cannot be screened, she should be advised on breast awareness.” Special arrangements can be made ahead of your screening appointment and if you think you might need help, you can call your doctor, or breast screening unit, to talk through your options. And crucially, with more research like Cancer Research UK’s, there’s hope there’ll be added pressure to design screening programmes more suitable for disabled people.
Disabled women deserve equal access to safe health care. This is the time to keep shouting it. It’s not an exaggeration to say it can be the difference between life and death.