Video guides will help people with autism and learning disabilities prepare for NHS appointments

An enhanced set of video guides to help autistic people prepare for health appointments will be created, following the award of funding from Bedfordshire, Luton and Milton Keynes Integrated Care Board.

Filmed materials were designed last year to help autistic people prepare for health appointments.  Following the award of funding from Bedfordshire, Luton and Milton Keynes Integrated Care Board, this will now be extended to include helping autistic people understand what to expect when attending maternity services and GP practices.

The publication of the ICB’s learning disability and autism strategy in autumn 2023 found that adults with autism or learning disabilities were less likely to attend screening appointments, especially for cancer screenings.  To understand the barriers preventing autistic people from attending appointments, Autism Bedfordshire talked with autistic adults and clinicians and in co-production created the first of the Breaking Barriers videos.

Titles in the ‘Breaking Barriers’ film series currently include:

• Going to a breast screening appointment;
• What to expect at a cervical screening appointment;
• Understanding my Type 2 diabetes;
• Tier 3 weight management;
• An introduction to LeDeR (a service improvement programme for people with learning disabilities).

The funding has been awarded to Autism Bedfordshire, a local charity whose aims include reducing social isolation and increasing psychological wellbeing for autistic people and their families.  All of the films will be co-produced with autistic people and clinicians, with all parties helping to shape the content of the videos to create understandable descriptions of what to expect when attending appointments.

The Integrated Care Board is funding four major projects this year to reduce health inequalities in particular groups, which will be set out over the coming weeks.  It is also funding three projects through its research and innovation hub, which were announced at an event held earlier this summer at the University of Bedfordshire’s Luton campus.

Julia Robson, inequalities programme lead at Bedfordshire, Luton and Milton Keynes Integrated Care Board, said:

“We know that autistic people are less likely to come forward for screening appointments, which can in some cases be life-saving.

“Although each individual is different, autistic people are often reluctant to put themselves into situations where they don’t know what will happen to them.  That applies not just in health services, but in other parts of life too.

“Over the course of the next 12 months, we will be investing over £78,000 in this set of films, which will explain what happens at different types of health setting, show how the room may be set out and, in some less invasive examples, include footage of the health appointment itself.

“We hope that this model will also work for other groups of patients who are less likely to attend certain types of appointment.  Autism Bedfordshire has a very strong track record of working with autistic people, their families and carers, and I am really looking forward to seeing the final products.  We expect they will literally save lives.”

Heather Wildsmith, Projects Development Manager at Autism Bedfordshire, said:

“We have already created a small number of videos for autistic and learning disability adults which are intended to remove the anxiety which can accompany an appointment.  We have been asked by autistic people if we could create more content for different health specialties, so we know there is a need for them.

“One autistic member told us: ‘Being a part of this project gave me the confidence to attend a breast screening appointment for the first time in many years.  With a little help from the project team I was able to find where I needed to go and the staff were nice.  I will attend again.’

“We also plan to create a set of videos of clinicians talking about how they work with autistic and learning disability adults to be used to help health workers who feel they do not know how to work with this group of patients.”

“We really want to increase the take up of appointments by autistic and learning disability adults in all sorts of health settings, and to increase the understanding by professionals of their differing needs.  By creating a portfolio of films, we hope that both patients and professionals will be able to benefit, and we are very keen to ensure that awareness and use of the films spreads as widely as possible.”