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8. We don't talk about death

Written by Meg Wilding, Best Practice Administrator and the MacIntyre project lead on The Victoria & Stuart Project.

We don’t talk about death at MacIntyre

- Sui-Ling Tang, All Together Group member, expert by experience

I keep reflecting on Sui-Ling’s words at our last All Together Group meeting - we know we talk about death and dying at MacIntyre, but it’s apparent that it hasn’t reached Sui-Ling and her staff team.

We invited Sui-Ling to be a part of the All Together Groups, as she is a fantastic advocate for people with learning disabilities and/or autism. Sui-Ling is passionate about accessible resources and information and also, she has expressed a real desire to talk more about death and dying but isn’t sure where to begin. We wanted to give Sui-Ling the opportunity to learn more, to feel supported to ask questions with a team of people who openly talk about death, including the opportunity to talk to Kingston University’s researchers who are experts by experience.

It’s a difficult subject for everyone to talk about, but it is the one thing that is inevitable for all of us in this world and that is a bond that we all really should act on.

At the All Together Groups, we make sure that everyone feels comfortable to be honest, ask questions and to leave if they feel it is too much! We also had the option to “throw things in the bin” – to which Sui-Ling has felt empowered to do so and we celebrated that choice!

In between these groups, we are making sure that we have support check in’s, reminding Sui-Ling that she is in full control of this experience and can opt out anytime she wants to.

“I feel that with more time given to this topic Sui-Ling will be an advocate for many others to talk about why it’s helpful to talk about death and dying” - Nicola Payne, Best Practice Health & Families Manager, MacIntyre

Sui-Ling has recognised that that her staff team need more support when it comes to talking about death and dying in order to fully support Sui-Ling in planning for her future.

My learning and understanding at this point in the project is yes we do talk about death, but;

  • Do we really reach everyone at MacIntyre?

  • How can we reach more people, staff and families?

  • How can we empower staff to feel confident?

  • Do we speak about death and dying in ways that make sense to us all?


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