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Suzanne Kelly is the cervical cancer prevention lead in the West of Scotland. Her team recently created a series of films about cervical screening for women with a learning disability. She shares how these were made and why co-producing the films with women with a learning disability was so important.
The statistics for cervical screening (smear test) attendance for women with a learning disability are very low. It’s thought that only 30% of women with a learning disability attend their cervical screening, while the attendance in Scotland for the general population is 69.3%. Our West of Scotland project, which is funded by the Scottish Government Screening Inequalities Fund, aims to increase the uptake of cervical screening in those who are least likely to attend their appointment.
We ran awareness sessions and focus groups with women with a learning disability, and also for their parents and carers. We partnered with the charity Enable Scotland, who provide information and advice to people with a learning disability and their carers, community based support, as well as leading campaigns to change. A group from their ACE network (Advisory Committee of Enable members) volunteered to be involved in our co-production project.
These meetings made us aware of the need for better resources for this group, to help them feel more informed about making a decision around cervical screening. This is really important because we were told many struggled to understand what their screening appointment letter meant when they received it, or were unsure how to arrange an appointment. On top of this, sadly, they were often told at their GP surgery that they did not need to go for screening because they were presumed not to be sexually active. We heard all sorts of stories of substandard care, including from women who were told they needn't bother going, or being told they could not bring their partner along with them. Another said they were told that because they were too tense at their GP surgery, they would then need to go to hospital and have screening under sedation. There was a clear lack of information, understanding and support. We hoped these resources would empower women with a learning disability with information to have more control over their appointment, and for healthcare professionals too to understand the issues this group faces.
Mainly, films are what we were asked for! Through our awareness sessions and focus groups, films emerged as the best medium to deliver our cervical screening messaging. It was also the preferred method due to Covid restrictions, as women were out in the community less than normal, and so there were less opportunities to disseminate printed materials. All Enable meetings were also being held online so it made sense. This project sought to address the barriers women with a learning disability experienced in engaging with cervical screening, by breaking the information down into short films which cover all aspects of the cervical screening process.
Developing a resource that responds to a need calls for a co-productive working process. In co-producing we were guided by what content women with a learning disability felt was necessary. While we are the screening experts at Jo’s, we needed to find out from women with a lived experience what information they needed to receive about cervical screening and how they needed to receive it. We were guided by Enable members in all aspects of the film delivery, from the content they wanted to see, down to the colours of text and length of time wording was displayed on screen. It was important to not push our own ideas of how the film project should look, but to facilitate discussions around creating the most useful tools for this group who are often misinformed about whether cervical screening is relevant to them.
Due to Covid restrictions, all our working group meetings were online. They went well, and also meant that we could have a group that were geographically quite far apart. We met six times over the course of three months, with a member of the film production company too. These regular meetings allowed us to move efficiently through the process of creating a script, to editing the films as they were developed.
Our co-productive process meant that we were developing films that truly represented what our working group felt was necessary to help others feel informed around this issue. From start to finish the working group identified the need, how the resource was developed, and how the films were shared and promoted in the community. Their lived experience was key to shaping the series of films. We also involved support staff, health improvement and a nurse to ensure that the information in the films was accurate, trustworthy, and any tips were suggestions that were manageable by GP surgeries.
The films were released in May 2021 during Scottish Learning Disability Week. These have been shared widely by the Scottish Commission for People with Learning Disabilities and Enable Scotland. Public Health Scotland have put the films on NHS inform website, and there are plans with Public Health Scotland to continue sharing them to reach as many women as possible. We have recently had them translated into British Sign Language to further widen their reach, as the working group indicated that this would be a useful resource. An evaluation of the films is also underway with 40 women, to assess the impact of the films.
We're excited to see what the impact has been, and are keen to continue to work in a co-productive process. This extends to all our service users, not just those with a learning disability. We aim to listen to what users need and prioritise their views in everything we do at Jo's.