Every year 1,200 people with a learning disability die unnecessarily from inappropriate healthcare. With less than a third of women with a learning disability attending a smear test, the impact is undoubtedly contributing to this number. We talk to one woman preparing for her first smear test.
The uptake of smear tests in the UK is at a 20-year low with just 73 per cent of women aged 25-64 attending their cervical screening. These figures are drastically lower for women with a learning disability.
Without the test irregular cells, HPV and cervical cancer can all go undetected. Beginning at the age of 25 the triennial test saves an estimated 2,000 lives every year in the UK, but women with a learning disability are missing out.
Ciara, who is a campaigns support officer at Mencap, is one of the two thirds of eligible women with a learning disability not attending their smear tests.
With only 31 per cent of women with a learning disability attending the test, the group is left at risk and misinformed.
As she approaches her 40th birthday, Ciara has decided to make an appointment for her first smear test; despite receiving invite letters since she was 25-years-old. When the first letter arrived in the post Ciara didn’t know what a smear test was.
Confused and concerned, Ciara turned to her family for an explanation. “My family really wanted me to go,” she remembers. “They explained it’s really important and detects cancer, but at the time I was more frightened than anything and I said I didn’t want to go.”
Ciara didn’t understand why it was so important to her as an individual. Thinking that the test sounded invasive and scary, she decided not to attend.
“I think it was the fear of the unknown,” emphasises Ciara. “I didn’t really understand it at the time, I didn’t know what was involved and I didn’t know what happened.”
Due to a lack of accessible information Ciara has remained uninformed about smear tests for nearly 15 years, leaving her without the tools and knowledge to feel comfortable to attend.
Last year, Ciara’s cousin lost her battle with cancer, she explains: “I put it off and put it off , then sadly one of my cousins died last year from cancer, she was only 48 and this year I’m going to be 40.
“Since her death I’ve realised I need to woman up and go because it’s a really important thing to do.”
In the wake of her cousin’s death Ciara knew it was time to change. The event highlighted the importance of getting checked and inspired her to find accessible information about smear tests.
“I’ve learnt that cancer doesn’t care who you are or how old you are, it can happen to anyone,” states Ciara.
When Ciara received her first invitation to attend a smear test there was little to no accessible information for women with a learning disability and the internet was not what we know today.
“I didn’t know where to get accessible information from,” Ciara continues. “The invite letter wasn’t accessible, it didn’t make sense what this was about or why I was going.”
A lack of accessible, easy-read information is one of the main barriers to smear tests for women with a learning disability. With the growth of the internet the amount of accessible and easy-read information is growing, too.
What a smear test is, what to expect when you attend and how to prepare are now covered, but only if this information is searched for.
FROM THE START
Ciara wants to see more information for women with a learning disability, starting with the invite letter being easy-read, she says: “There’s better information now on the internet but there needs to be more that’s easy read and accessible for everybody.”
The taboo around smear tests and people with a learning disability being sexually active can sometimes make the topic feel uncomfortable for carers or healthcare professionals. This negative perception is leaving women at risk, Ciara stresses:
“It shouldn’t matter if you have a learning disability or not, all women should have access to screening.”
After searching on the internet, reaching out to colleagues and family, and using social media, Ciara has decided to make an appointment for her first smear test.
Increasing the uptake of smear tests for women with a learning disability starts with raising awareness, creating accessible information, and eradicating stigma around smear tests.
“It’s really important to break down the taboo around smear tests and it’s really important that we talk about cancer awareness,” stresses Ciara.
Removing this stigma will give more women with a learning disability access to information, and allow them to ask questions freely and comfortably. “I think if we can prove the process isn’t as scary as you first thought then it might help other people go,” adds Ciara.
“I’m hoping more women with a learning disability will attend a smear test and more lives are saved.”
Women with a learning, physical, sensory disability or mental health condition are entitled to the same healthcare as their counterparts, but without better information and support the number of eligible women attending a smear test will continue to fall.