“They think I won’t understand.” “Does it take away your virginity?” “Do I have to take all my clothes off?”
These are just three of the comments made by women with learning disabilities in a recent video which aims to dispel myths about cervical screening for a campaign in the East Midlands.
Their words illustrate how anxiety about cervical screening (also known as smear tests), which is offered to all women aged 25–64, may be higher in those with learning disabilities.
Missing out
According to NHS figures, 31% of women with a learning disability who are eligible for the screening have them, compared to 73% of those without a learning disability.
This low uptake leaves people at risk of undetected cervical cancer.
This level is reflected across Leicester, Leicestershire and Rutland.
To minimise this health inequality, women with lived experience came together through the Learning Disability and Autism Collaborative (LDAC) to produce two short videos to help answer common questions.
The LDAC, led by Leicestershire Partnership NHS Trust, aims to improve health outcomes for those with learning disabilities and autistic people in Leicester, Leicestershire and Rutland.
It works alongside the integrated care board (an NHS body that plans local health services), University Hospitals of Leicester NHS Trust, the area’s councils, voluntary bodies and primary care services.
The first video, which is two and a half minutes long, helps people book and attend appointments. It features Dr Archana Anandaram, a local GP and a clinical lead for learning disabilities, alongside experts with experience in a question and answer format.
The GP answers queries on issues including if a male or female health professional does the test (“you can ask for a female member of staff”), if the procedure is painful (“it shouldn’t be painful, but it might be a little bit uncomfortable”) and how long it takes (“a few minutes”).
Anandaram explains: “Working with lived experience experts was a privilege – we collectively decided that we wanted the films to be relatable, sharing the real-life experiences of individuals who have gone through the process.”
The second video, which is four and a half minutes long, shares an experience of a typical appointment.
In the six months since the two films were launched in Learning Disability Week in June, they have been shared by GP surgeries and local health services. They are on a range of platforms, including Leicestershire Partnership NHS Trust’s YouTube channel.
In particular, the films highlight good practice through making reasonable adjustments to help everyone access to good healthcare. Adjustments are small changes, such as information made available in larger fonts, easy-read materials and longer appointment times.
Calli, an expert with experience who features in the videos, describes the adjustments she needs: “When I received the letter inviting me to attend my cervical screening, I went to the GP to get an easy-read leaflet to help me understand about the smear test and what to expect.
“The video highlights how important cervical screening is, especially as it can save your life. If I did not go to my cervical screening appointments, I would not have found out that I had the human papillomavirus.”
Human papillomavirus can raise the risk of developing cervical cancer, so Calli was invited for more tests to check if she needed further treatment. She does not need any and will be invited for another test later this year.
Mark Roberts, associate director at Leicestershire Partnership NHS Trust and LDAC lead, says increasing the uptake of cervical screening uptake by people with learning disabilities as “a priority we will continue to work on”.
The videos will remain online to ensure the importance of cervical screening remains at the forefront.
Vanica Patel is communications and engagement lead at Learning Disability and Autism Collaborative
