Access All Areas, a production group involving autistic people and people with learning disabilities, has been working with the NHS, Skills for Care, and their partners to develop co-produced training videos for The Oliver McGowan Mandatory Training on Learning Disability and Autism.
The training programme is named after Oliver McGowan, whose death shone a light on the need for health and social care staff to have better training on how to understand and meet the needs of people with a learning disability and autistic people.
The Oliver McGowan training programme comes in two tiers and is designed so staff receive the right level of training. Tier 1 is for staff who require general awareness of the support autistic people and people with a learning disability may need. Tier 2, which is is co-delivered in person by people with lived experience, is for those who may need to provide care and support people.
The diverse range of training videos were co-created and co-scripted with people with learning disability and autistic people, including members of the Access All Areas’ team.
All health and social care staff who complete Tier 2 of Oliver’s Training will watch the videos, which aim to help staff explore what good communication and access to support looks like and how that can lead to better care and support for people with a learning disability and autistic people.
Terry and Lee who feature in the videos have shared their experience of working on the training programme.
How were you involved in these videos?
Lee: I am an autistic artist and played the autistic father of Jade who was also autistic. In the video Jade was nervous about her upcoming care review and as my character was only recently diagnosed, I was supporting Jade to speak up about her needs. The film helps social care staff to understand how to adjust their care so autistic people can feel listened to and valued. It was interesting to play a parent who was autistic just like his own daughter. I was like, ‘Yeah I’m up for it and see what that looked like.’ In places the script was a bit wordy, so in rehearsal we found a more natural way for the character to speak and edited the script as we went along.
Terry: I was part of the scripting process- we had scripting sessions with writers and directors, Selena, and Nick, and went through the script and how we were going to set up the scenes. I also acted in it. I performed in two different films. The first was playing Caydon and the second playing Blake. Both films centred about my character getting sepsis and the complications in communication that both health and social care staff can have. I gave my own experiences of trying to discuss my symptoms when not feeling very well and how sometimes they can be misunderstood.
I have cerebral palsy; a learning disability and I am a wheelchair user. So, I used my experience to explore how my characters would deteriorate over the days when they had sepsis. My characters got weaker over a period of so many hours, so I suggested in the beginning I would wheel myself in my chair, then in the next scene my support worker would wheel me to show my strength had declined.
What was it like taking part in the training videos?
Terry: I’ve had so many bad experiences in hospitals and with health and care staff in the past myself that it was liberating. I thought- if I can make a difference to someone else’s experiences, then that would be a good thing.
Lee: Really surprising. I was like, this is different – a type of part I’d never played. It rang a bell for me with my own experiences of confusing letters.
What are you hoping that people will learn from the videos?
Terry: People with a learning disability and autistic people are still human beings and we should get treated like other human beings. When we’re not well, we need to be truly heard, trusted, and taken seriously.
Lee: It’s good to have good communication and take things slow at times. Even though my character was a father figure, he also needed time to understand. He was a good father and shouldn’t be judged. Some people find social care and letters and reviews stressful – sometimes you don’t get a chance to say what you want if things are not clear or rushed. Extra support is good.
Why do you think The Oliver McGowan Mandatory Training is so important?
Terry: I think mistakes have been made in the past – let’s not repeat them.
Lee: To be sure that people should understand other people’s needs and help them to work better in the future. To understand the patient’s desires. It’s important for people with a learning disability and autistic people to be involved in training to see they are not alone if they struggle to understand medical letters etc. They can ask for help and to take things slow and make them clear. One bit of information at a time.
Why is it important for people with a learning disability and autistic people to be involved in Oliver’s Training, and in producing content like these videos?
Terry: Because we’ve got lived experiences and that makes the training more real to life. Then the staff know what to really expect. It also empowers us as individuals when we access the healthcare system in real life.
Lee: We should be given the chance to play that role and tell our stories.
To find out more about paid opportunities for people with a learning disability and autistic people across England to get involved in Oliver’s Training as co-trainers, visit The Oliver McGowan Mandatory Training expression of interest webpage.
