When Shaun made a film for Learning Disability Week (and Ian helped out)

On 6 June, we found out that NHS England wanted to do a film about my prostate cancer diagnosis and how the hospital passport (or health passport) and reasonable adjustments made it easier for me to get care and treatment.

We were surprised because we nearly made this video before Christmas, but it was postponed, so by June, we weren’t sure if it was going to happen.

Before working on the video, I thought finding out you have cancer was the worst thing that could happen to you. I thought I was going to die, and I was going to miss my family and friends and lose everything.

I received a letter that I couldn’t read properly. I thought it was about my kidney stone, but it turned out to be about having cancer.

Before I did the video, Ian (Director at IC Works) told me that the video was going to be about the hospital passport (or health passport) and reasonable adjustments and that I could talk about my experience of having prostate cancer.

Shaun waits for film-maker Gavin to set up the shot

This video is very personal to me because my best friend Catherine got breast cancer, and then I got prostate cancer. It was hard for us, but we supported each other when we got cancer, and we supported each other when we were having a tough time.

Sometimes we would talk about how we felt tired and in pain. We both said that having cancer can be very upsetting and emotional, too. If Catherine were not in my life, having cancer would have been a lot more difficult and tougher to cope with.

We both said that sometimes people don't understand how lonely having cancer is, and if you don't understand the information about the type of cancer you have, it could be very stressful.

Before Catherine died of cancer, at the end of 2024, she told me how much pain she was in because of the type of cancer she had, and she said she was getting frustrated with the doctors and health workers. She said they were not listening to her about the different pain she had, which made us both upset. A couple of weeks later, she died.

That's why I wanted to work on this video to promote health passports, accessible information and reasonable adjustments for people with a learning disability and autistic people with different types of cancer.

I am very passionate about making information about cancer accessible and using reasonable adjustments. I do not have a problem with using my good and bad experiences of having prostate cancer. Being honest, it can be hard to talk about prostate cancer, but I push through it.

When I was working on the video with Ian, Michelle from NHS England, film-maker Gavin (we’ve worked with Gavin before on other accessible video projects) and nurses Suzanne and Jenni from Rotherham General Hospital, I felt very comfortable and respected by the team. I was treated as an equal because of my experience of having prostate cancer.

Shaun chats to Suzanne (Clinical Nurse Specialist Urology) from Rotherham General Hospital

I was determined to make a good video because my best friend, Catherine, died of cancer.

When we made the video together, we took our time, and that made it easier for me and everybody else making this important video about reasonable adjustments, my expectations of my cancer and the health passport. Doing this video was very emotional and hard too - I was very proud to work with everyone.

I got support from Suzanne (Clinical Nurse Specialist Urology) when I had my hospital appointments about my cancer, because she didn't want me to miss my appointment. A few months ago, I moved into my new home, a bungalow, and I was under a lot of pressure.

Suzanne called me to remind me not to miss my appointment, and that made a big difference to me and was a reasonable adjustment. She talked to me with respect, not like a child, so I had Suzanne’s details handy when Ian called me about the film project. She worked hard and helped to make sure that the film was ready in time for Learning Disability Week, which is this week - June 16 to 22, 2025.

Shaun at the filming day on 6 June 2025

He worked with the team from IC Works, Frizbee, NHS England and Rotherham General Hospital to create a video about reasonable adjustments and hospital passports to be launched during Learning Disability Week.

Ian and I were filmed outside Rotherham Hospital to promote the health passport. Ian played my support worker and asked me about my appointment and my health passport as we were being filmed. Ian did a good job playing my support worker in the video, and I forgot how much I enjoy acting, which I’ve done for other jobs in the past.

Overall, I really enjoyed being in the video and the acting too.

I understand the bigger picture, and I'm very happy I could use my lived experience in the video about my cancer. Everyone did an amazing job to make this important video for Learning Disability Week.

The experience of working on the video has been amazing. I got a bit upset thinking about Catherine, but I worked past it and used my experience in a good way to make that video work.

We made a difference when we made the film on Tuesday, 10 June, and we will make a difference to everyone with a learning disability and to people who do not have a learning disability.

Well done, everybody! I’m very proud of this video.