Written by Andrea Bruun, Research Associate, Kingston University.

Earlier this year, we were invited to present at a workshop called “Closing the gap for people with a learning disability” at St. Christopher’s Hospice in Sydenham. The workshop was organised by Emma Hall (Consultant, St Christopher’s), Phoebe Mooney (Learning Disabilities Clinical Nurse Specialist, St Christopher’s), Sue Marsden (Learning Disabilities lead, Greenwich Bexley Community Hospice), and Prof Henk Parmentier (Clinical Lead Learning Disabilities SWL ICB) and focused on improving access to, and experience of, palliative and end-of-life care for people with learning disabilities. Our team was specifically asked to present about “What does the research tell us about improving care? Current and future studies”. The workshop was on 24 April 2024, so let me tell you a little bit about how it went.

I ended up travelling alone to Sydenham that Wednesday in April. Irene was supposed to be with me, but she had to go back to the Netherlands for a funeral (if you know us and our team, then you will also know that we are quite open about death, so Irene has written a little blog about this here).

The rest of the team was all dressed up in the O2, busy celebrating being Learning Disability and Autism Leaders’ List finalists. Our researchers with a learning disability (Amanda, David, Leon, and Richard) were celebrated for “changing the narrative around death and dying for individuals with learning disabilities”.

So that meant I was the only one representing our team at St. Christopher’s. But do not worry! I was surrounded by kind workshop attendees, mostly health and social care professionals (who are doing an amazing job) on St. Christoper’s inspiring CARE (The Centre for Awareness and Response to End of life) premises.

The day began with a presentation by Lloyd Page. Lloyd has a learning disability and is a learning disability champion for Lewisham Hospital and Queen Elizabeth. He also has other incredible and impressive things on his CV such as being part of the 2012 Olympics team and being an author for Books Beyond Words. In his presentation, Lloyd was answering the question “What do I need from you?”, and he talked about hospital passports and reasonable adjustments that can be made in the hospice for people with learning disabilities (one of which was easy-read information). He also mentioned helpful resources, including resources from Marie Curie, Books Beyond Words, and St. Christopher’s own easy-read welcome book. He also stressed why it is important to talk about planning for the end-of-life. An absolutely brilliant start to the day – and also the perfect introduction to my presentation that came right after Lloyd’s.

My presentation focused mainly on our toolkit and brand-new resources, and it was a pleasure having Lloyd in the audience. He confirmed a lot of the things I was saying during my presentation, and it made me feel like we got (at least) something right. Despite having made this toolkit with the All Together Group, I sometimes worry we have been working in a (lovely) bell jar. What if we have only made a toolkit that works for the people in our group? Seeing and hearing Lloyd nodding and saying “yes!” made me calm and confident – we got this!

It was then time for a “round table discussion” where we discussed how we can improve care and support for people who may need Palliative Care in smaller groups. We were asked to label our ideas according to specific categories, two of these were “priorities” and “quick wins”.

When going through what people had written, The Victoria and Stuart Project resources were mentioned. I could not believe my eyes. Did it really say that? And it did! I was surprised, incredibly happy, and immensely proud.

Most of the people at the workshop would only just have heard about the resources. Already deeming them important and useful is an absolute dream. Despite having heard this before and often getting really nice feedback, as a researcher, it is always nice to hear that your work is useful. I feel like we are actually making a difference. I cannot wait to see the resources doing their magic in practice – in real life! We are launching our toolkit on our website on 20 June. There is both a one-day launch conference (20 June) and webinar (27 June) if you want to celebrate with us.

Sue Marsden, Phoebe Mooney, and Henk Parmentier did a brilliant job with their presentations. I want to thank all of them and Emma Hall for organising such a wonderful event and for inviting our team. As you can tell, I left Sydenham on a cloud. I cannot wait to go back! (spoiler: I will be seeing a lot more of the Christopher’s team in a brand new project. We will tell you more soon. Watch this space!)