Silver screen to boost early detection of cancer
A suite of films has been launched in Greater Manchester to support autistic women and women with a learning disability to access potentially life-saving cervical cancer screening.
Believed to the first of their kind in the country, the films have been made by autistic women and women with a learning disability for their peers – with a breadth of real-life experiences shaping every stage of development.
This group of people often experience poorer health and shorter life expectancy compared to the general population. They also face barriers to cancer screening programmes, leading to lower uptake. Cervical screening non-attendance is directly linked to an increased risk of cancer.
After being awarded just over £143,000 by the Greater Manchester Cancer Alliance, a range of partners came together to develop several bite-size accessible films about cervical cancer screening and the HPV vaccine.
The partners include The University of Manchester, Pathways Associates, Rochdale Gateway Leisure, People First Tameside, the National Institute for Health and Care Research (NIHR) Manchester Biomedical Research Centre (BRC), Pennine Care NHS Foundation Trust, The Christie NHS Foundation Trust and NHS Greater Manchester.
Lizardfish, a film company with experience of working with autistic people and those with a learning disability, was appointed and four women who are autistic and/or have a learning disability wrote the scripts and starred in the films.
Left to right: Dr Jan Owens, research fellow at Manchester University and project lead; Dr Melissa Kirby, research associate at Manchester University; Liz Wright, CEO of People First Tameside; Leeanne McKew, member of People First Tameside; Dr Helena O’Flynn, GP and early diagnosis lead for gynaecological cancers for the GMCA; Emilie Ashe, member of People First Tameside; Dr Lorna McWilliams, research fellow at The University of Manchester; Katie White, member of People First Tameside
The scripts were checked by academics and professionals for accuracy and tested with people with lived experience.
The films aim to support choice and decision-making about immunisation and screening and to prepare people mentally and practically. They cover a variety of topics, including the importance of early detection, what screening entails, practical tips to make the process easier and what to expect after the test.
One video is aimed at parents, focusing on the importance of allowing their child to have the HPV vaccine and one is aimed at health professionals explaining why people with a learning disability might not access screening and offering tips on supporting and communicating with them.
This incredible two-year project has been supported throughout by colleagues from across the NIHR Manchester BRC’s Cancer Prevention and Early Detection (PED) Theme, from initial conception to now completed and published films.
This included Manchester BRC’s Cancer PED Research Programme Manager, Emma Thorpe, who supported the project lead in bringing together an interdisciplinary team to help with project management and facilitating initial community engagement.
Emma, said: “Part of the work of our Theme is about providing individualised prevention and early detection strategies so I am delighted to have been involved in this collaborative project which is helping to breaking down barriers to cancer screening uptake.”
Dr Lorna Williams, Research Fellow in Manchester BRC’s PED Theme, who also provided behavioural science input as a co-investigator, added; “This project directly aligns with one of Manchester BRC’s aims of reducing health inequalities by producing both an accessible public-facing resource to improve informed decision-making to attend cervical screening and a cervical screening health professional training video.
“It is great that these will be shared across Greater Manchester to increase the implementation of reasonable adjustments within the screening programme.”
Leeanne McKew, 32, from Tameside is a member of People First Tameside and one of the women who developed and starred in the films. She said: “I think the films will be really helpful for women who are unsure about screening. Having information helps reduce anxiety.
“I enjoyed everything about the project, including coming up with ideas and hearing other ideas, and the filming was fun. It was good we could film in a real clinic, as people can see what it’s really like.
“My advice to others is to get it done, it’s worth it. And if you’re worried, talk to a friend or family and see if they can come with you.
“If we can get it right for autistic people and those with a learning disability, we can get it right for everyone. If people want to change the story, they need to listen to us, so projects like this are really important.”
Ali Jones, director of early diagnosis at the Greater Manchester Cancer Alliance, said: “Uptake of cervical screening is 30% for people with a learning disability, versus 70% for people without.
“Evidence shows films are an effective way to communicate health information to people with a learning disability. We were delighted to fund this important piece of work via our early diagnosis innovation fund, supporting local projects with a focus on early cancer diagnosis.
Dr Janine Owens is a research fellow at The University of Manchester and project lead. She said: “Having worked on including people in choices and decisions about their health for 25 years, I feel the videos are a valuable way of enabling a marginalised group to make their own choice about cervical screening, with support. The whole process was hugely enjoyable. This is down to our co-producers and partners who challenged us to think in alternative ways.”
Carol Lonergan, Pennine Care’s learning disability health inequalities lead, featured in some of the films. She said: “Clear, accessible information empowers people to make informed decisions about their health. By increasing uptake, we can ensure more women receive early detection and treatment if needed.
“Being in the films was outside my comfort zone, but I want to do everything I can to make sure autistic people and those with a learning disability are supported to live longer, healthier lives.”
The films are available on YouTube.
They’re being shared with a range of organisations and professionals who support autistic people or those with a learning disability. They’ll also be embedded into the GP annual health check toolkit and form part of a new reasonably adjusted cervical screening pathway.