Written by Ryan Mitchell, Referral and Assessment Manager at Dimensions and member of the All Together Group on The Victoria & Stuart Project.

Hey, I’m Ryan. I am a Referral and Assessment Manager for Dimensions UK. I started working in Adult Social Care in 2015 as a Support Worker. Recently, I have had the pleasure of being involved in The Victoria and Stuart Project. This is a project that I feel really passionate about due to mine and my colleagues experiences in delivering direct support to people reaching the end of their life. The conversation around death and dying is often something people are unprepared for but that can make things even more difficult when the conversation no longer can be avoided.

What was your role in the project, and what have you been doing to help it?

I was part of the ‘All Together’ research group for The Victoria and Stuart project. Alongside the researchers from Kingston University, the group consisted of families of people with learning disabilities and/or autism as well as a range of professionals from across health and social care, including different organisations such as Dimensions, MacIntyre and the NHS.

We came together to listen to feedback from a separate group of people with lived experience and to look at suggested tools and resources that would be aimed at supporting people with a learning disability around choice and understanding in end of life/funeral planning.

I fed back from the position of a support colleague in social care who has unfortunately supported families, other people we support and teams through bereavements. I was able to share some real examples where we were able to ensure person-centred principles guided us through the process.

What are some of the things you learnt throughout your time on the project?

Some of the keys points I picked up during my time being involved in this project is how we as support colleagues can have good intentions by not wanting to cause hurt and upset; we may avoid subjects such as death or terminal illness and we may be guided more by our own emotions on these subjects rather than being led by the person and their needs at the time.

How our own beliefs may be incompatible with what the person needs at the time, for example explaining Heaven as context, which may be difficult for someone to understand why they can’t visit loved ones there. Also on the other side I thought it was really powerful to hear from one of the researchers who was the same age as me, saying to let him live first before he has to talk about his funeral arrangements.

This was a reminder that with all the good will intended, we may be taking the conversation away from the person who it matters the most to.

What went well or what are you pleased about?

The combination of groups reflecting on each other’s discussions I felt went really well, as this kept the project meetings insightful and thought-provoking. Death and grieving is personal to each person and it’s important to capture as many voices as possible in the conversation, especially when the tools are being designed to help people be visible and have a voice in discussions that in the past might have happened without them.

Would you do anything differently?

Not as to do differently but as a thought: if logistics allowed, meeting as part of an in-person group instead of online might have steered conversations differently by putting the participants in a situation where they would be more acutely connected to other people’s emotions.

What next?

I look forward to seeing the final resources, if leads are required to help embed things into support teams I would happily be involved!