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66. The toolkit has landed!

Written by Prof Irene Tuffrey-Wijne, Project Lead, Kingston University.

It’s here! It’s finally here! Our toolkit has landed! Launched with a BANG at a truly inclusive conference on 20th June.

I’m sure you’ve seen the toolkit already, but have another look here. It’s brilliant.

I happily admit to wiping away a tear or two when I first saw the finalised website last week. And then choked up again when we all counted down to the moment of the launch. It was a magic event, full of tears and laughter, shared emotions, joy and dance. Just watch this:

As you can see, the entire launch event was hosted by people with learning disabilities. Richard Keagan-Bull chaired the day. Leon Jordan led the delegates into beautiful moves. Amanda Cresswell co-presented the toolkit itself. Sui Ling Tang was the chat-show host on the Sui Ling Show, welcoming people onto her sofa and enabling everyone to speak: parents, researchers, support workers, members of the “All Together” co-design group…

We watched some of our newly created videos that accompany the resources, like this one, with three of my colleagues contemplating their own funeral plan. If that sounds grim, let me tell you: The audience clapped, cheered, laughed and wiped away more tears.

This is the culmination of two years of hard work. It’s hard to believe how much we have achieved together. There were over 200 people involved in the study, including 36 people with learning disabilities, as part of all of these categories:

  • 19 researchers

  • 27 advisors

  • 101 focus group participants

  • 20 All Together Group members

  • 34 toolkit testers (staff), plus the people with learning disabilities who tried out the planning

  • 2 artists and a guide developer

Plus the people behind the scenes who supported all those people within their organisations.

But the success of the project is also thanks to all of you, following us, cheering us on, watching our webinars, sharing the toolkit, using the toolkit.

Richard, Amanda and myself hosted a webinar to show people around the toolkit. If you missed it, you can watch it HERE.

It’s over to you now. We will continue to promote the toolkit in lots of different ways. We still have a month left to finish writing articles and reports, plan conference talks (seven of us are off the Chicago in August, to present our work at IASSIDD World Congress… if you’re there, come and say hello!).

Then we’ll start the next project in September, even bigger than this one. We will look at the best ways to DELIVER end of life care and support – not just PLAN it. We’re busy setting that study up, so watch this space. Here’s a formal preview:


But perhaps we should all just stop for a minute, and breathe, and be proud of our work together. All I can say is a huge THANK YOU to everyone. This was co-production at its best. We really couldn’t have done it without you all.


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