Neurodiversity Friendly Smear Testing
With thanks to our corporate sponsor, Wired Differently, and it’s co-founder Sara-Louise Ackrill, Start Differently is immensely proud to provide support to a project which highlights the needs of neurodivergent women and people with a cervix when accessing cervical smear testing; improves the experiences of the 31% of neurodivergent women who currently get tested, and helps to create an environment where the remaining 69% feel safe to access this critical screening service.
The Project:
The Neurodiversity (ND) Friendly Smear Testing Project started in 2020, but was put on hold as NHS surgeries were faced with the challenges of COVID19 and recovering from the pandemic backlog. In 2025, Start Differently is supporting the next stages of the project and the first GP surgeries who commit to this important promise.
Why?
31% of neurodivergent women and people with a cervix are having smear tests. This is currently 73% for women in general, and the NHS has a target for 80% of women to be tested regularly.
You can see from this simple statistic how serious the problem is and how few ND women are accessing this vital element of their healthcare.
The project is 100% informed by the lived experience of ND women and people with a cervix, and the feedback from them which shows just how easily changes can be made to make testing safe and accessible for them.
Who?
We are partnering with NHS GP surgeries and welcome the involvement of any surgery anywhere in the United Kingdom.
GP surgeries will commit to providing a service that is consistent with the needs of ND women in order to earn the 'ND friendly smear test surgery' charter mark that they can then display on their website and in their waiting room.
When?
We are currently co-designing the assessment and charter mark process with a focus on minimal time investment for maximum impact for everyone involved.
Our first research phase will be complete in April 2025, with the first surgeries completing their self-assessment and promoting their commitment to the charter from October.
We would also like to hear from GPs and their teams with an interest in joining the scheme when it opens later this year.
How?
A pilot group of 9 GP surgeries are working with us to co-design the charter mark process.
The needs identified through our research and co-design process will be presented in a clear way, in the form of a checklist, which then forms the basis of the commitment to patients.
The new charter mark will be self-assessed by participating surgeries, working with one of our charter champions.
There is no cost to participate other than the time it takes to attend a few online meetings and some basic awareness raising events. Any materials will be provided by Start Differently.
We take on the costs of measuring the effectiveness of the project. We want to work with surgeries who are happy to pass on any colleague feedback so we can ensure the project is meeting needs of the surgeries and also the patients.
Anonymous patient feedback will also be used to inform the annual review of the charter mark and ways to improve our collective outcomes.
We are happy to contribute to any local or national PR the surgery would like to do to promote their being part of the initiative.
Sara-Louise shares her own experience as an illustration of the importance of the project:
“This project comes out of my lived experience: By the age of 40 I had only been tested twice. On one of these occasions the test hadn't worked. To access any testing, I had to go with my autism advocate who I lost when I moved cities, and I have not been able to find one since. Because of my executive function and sensory challenges, I have found that self-testing just doesn't work for me either. Now, I am on a 21 week waitlist to have a test carried out under general anaesthetic. My mission is to change the smear testing landscape for neurodivergent women and people with a cervix.”
Get in touch
We are waiting to hear from you! We would love to speak with GPs, nurses and other clinical staff; as well as practice managers and advocates, about the project and how you can get involved. Please complete this short form and a member of our team will be in touch.
Although we can’t provide specific signposting at this time (something we hope to do in the future), neurodivergent women who have experienced any difficulties with the smear testing process can also contact us for further information or to share insights that might assist our ongoing project work. Your input would be much appreciated.