A fully inclusive event

We wanted to run a fully inclusive, creative and interactive event; we carefully planned how to approach the day to ensure that everyone felt comfortable. We knew that the people supported who were joining us had previously had contact with our Dying to Talk team, whilst the staff attending were a mix of those who’ve been through our 3-session, 9-hour training and those who are new to MacIntyre. To complete our attendees, we were delighted to welcome two family members for whom this was their first meaningful contact with the Dying to Talk Project.

Talking about death and dying and making end of life plans

After initial introductions and an ice-breaker led by Project Manager Nicola Payne, we offered people supported the chance to continue the work they’d been doing earlier this year with our Project Lead Rachel Furniss. Rachel had set up a table that enabled the people who chose to join it the chance to think about and talk about death and dying in ways that made sense to them, using our creative and fun approaches.

Two people supported chose to remain with the rest of the staff and family members looking in depth at what we’ve done as part of the Project so far, communication tips for talking about death and dying, and how and why we should start to make end of life plans.

We looked at and talked about MacIntyre’s two easy read end of life planning documents, ‘My plan for before I die’ and ‘My plan for after I die’, and started to talk about our personal preferences for medical interventions and funerals.

We also looked at the experiences of people supported by MacIntyre, highlighting Martin’s ‘good death’ and Jo and Jess’ proactive planning. Throughout the event we handed out resources for attendees to use to implement what we were talking about.

The perspective of our hospice guest

Andy from St Richard’s Hospice talked about what hospices offer, and how they can support people with learning disabilities, their families and MacIntyre staff. Andy has worked with people who have cognitive difficulties for 19 years and has spent the last 4 years working in end of life care, so his perspective was very welcome.

Andy said:

“The event was fantastic. It was great to see people being supported, their staff and family members all sitting together having discussions that they would otherwise not be having. This is a potentially ground-breaking project that has the opportunity to make a huge difference to countless people around the country. I was delighted to be involved.”

Feedback from attendees

To help us learn and improve, we asked all of our attendees for feedback after the Roundtable.

A person supported said:

“I don’t like talking about it too much as I get upset. I would feel OK talking to staff about it I think.”

Family member Jackie said:

"As a family we’ve been thinking ‘What do we do about end of life planning?’ We’ve done the practical things, a funeral plan, but nothing more. You’ve given me a sense of purpose today. I now understand why making a plan is so important. I understand the purpose behind it now. I can see that there is a process. You’ve empowered me. Thank you."

A staff member said:

"I feel more confident about finding different ways to start conversations by changing the approach. Casually dropping in conversations around the subject rather than sitting down with a form.”

What’s next?

We hope to run more roundtables in the future, but in the meantime:

Join our Twitter Space on 18 August. 1:30pm-2:00pm

Hosted by: MacIntyre’s Dying to Talk team

Featuring our special guest: Andrew Schwab from St Richard's Hospice

Follow @meetmacintyre to join our space 

About Beth:

Beth Britton is a consultant, trainer, mentor, writer, campaigner and speaker who is an expert in ageing, health and social care.

For more information about the Dying to Talk project, you can listen in to Rachel Furniss, Project Lead, who was interviewed by a local radio station last week. Rachel shares the team’s amazing work and talks about how MacIntyre supports people with a learning disability and/or autism to feel more confident and in control of their future and being able to talk about death and dying.

For more information please contact Rachel Furniss

  • E: [javascript protected email address]
  • T: 07824095724 or 01246 236200