NHS England has pledged to eliminate cervical cancer by 2040, but this can only happen if everyone is included in screening. To mark Cervical Cancer Prevention Week, we ask: how accessible are screening programmes for disabled women and people with a cervix?
If it’s found early enough, cervical cancer is one of the most treatable forms of cancer. Regular screening can detect and even prevent cervical cancer, which is the fourth most common cancer among women and people with a cervix worldwide. Thanks to screening programmes, and the HPV vaccine given to teenage girls in UK secondary schools, the NHS England goal to eliminate the disease by 2040 doesn’t seem too far-fetched. But this target won’t be achieved unless more disabled women and people with a cervix are able to access screening and preventative measures.
INVISIBLE
According to research by Jo’s Cervical Cancer Trust, 88% of disabled women find it difficult to attend a cervical screening, while 63% said they’ve been unable to attend due to their disability. The report – ‘We’re Made to Feel Invisible’ – highlights the barriers disabled people face when trying to access screening, from physical access issues to outdated stereotypes around sex and disability.
Kerry Thompson waited more than ten years for follow-up testing after her smear test showed abnormalities. As a wheelchair user with muscular dystrophy, Kerry struggled to access screening. “I had a smear test with my local GP. The nurse would come to my house to do it, because it was becoming increasingly hard to have it in the surgery which wasn’t equipped for my needs,” explains Kerry.
After moving to a new home close by, Kerry was forced to change GP, but the new surgery was completely unable to meet her accessibility requirements.
“I got a letter back with my results stating that there was an abnormality and that I needed to be retested,” says Kerry. “I tried and tried with my new doctors with no joy. Every year for ten years I received a letter saying I was overdue. Every year I would phone up, and was told by the receptionist they couldn’t cater to my needs.”
Following years of knockbacks from healthcare professionals, Kerry was left feeling numb and frustrated. “I’d become so deflated,” she reveals. “I didn’t push [the doctors]. I could have pushed harder but I’d rather make the best out of a bad decision, so if somebody else can learn from my mistakes then that’s ok.”
BARRIERS
The HPV vaccine (which is more than 99% effective at preventing pre-cancerous cells resulting from HPV, the virus that’s been linked to 70% of cervical cancers) and cervical screenings are the most effective methods for preventing cervical cancer. But disabled people are often left out of the equation and struggle to get the healthcare they need, for a multitude of reasons including inaccessible facilities to outdated views on disability and sex.
“For lots of women, there is anxiety around the test and what it entails,” explains Hannah Wright, a policy officer at Jo’s Cervical Cancer Trust. “Anyone who has past experiences of pain or trauma can find it difficult to attend. But we also know that, for a lot of women with a physical disability, there can be even more barriers.”
STIGMA
“There are many different stigmas, myths and misconceptions around this. [Disabled] women were told that they didn’t need to be screened for cervical cancer because it’s assumed they weren’t sexually active,” highlights Hannah. “Or women were told that they’re ‘too complicated’ because they’ve got different access needs, and were then encouraged to remove themselves from the screening programme.”
This is something Kerry is all too familiar with. After years of being unable to get past the doctor’s reception, she faced further discrimination. “You still have a lot of professionals assuming you don’t have sex because you’re disabled, so you don’t need a test,” explains Kerry.
CALL TO ACTION
Cervical Cancer Prevention Week takes place from 22 to 28 January 2024, to raise awareness and highlight what needs to change to meet the 2040 goal.
“We want to see the resourcing, the funding, the staffing to make elimination a reality, to consign this cancer to the history books,” declares Hannah. “We need to see strategies that actually put tackling inequalities at the front of our approach, and we need to see the resourcing and actual commitments from government to make this happen.”
“We know across vaccination and screenings that there are massive disparities between the groups who can attend these prevention programmes,” stresses Hannah. “We won’t eliminate cervical cancer if we leave certain people behind.”
DON’T LEAVE US BEHIND
Determined to make change for herself and others, Kerry is working with her local hospital to improve their accessibility procedures so other people don’t have to endure what she went through. “2040 to eliminate cervical cancer? Great, fabulous. Just don’t leave us behind,” exclaims Kerry.
The prospect of wiping out cervical cancer within the next 16 years should be celebrated. But this won’t happen while disabled women and people with a cervix are being failed by the system and being forced to face increased risk of cervical cancer because of inadequate care. Progress is being made but, in order to meet these targets, focus on accessibility must be a priority going forward to ensure everyone is included.
Visit Jo’s Cervical Cancer Trust for support, advice and information on accessing cervical cancer screenings.