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40. Telling the world about dying, death, learning disability – and inclusion!

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

It feels as if we have turned a corner. Thinking and talking about dying… and PLANNING AHEAD for it: We have listened to people with a learning disability, families, support staff, doctors, nurses, service managers. We have searched for wisdom and materials that others have already put out there. We found gaps. We have worked together to fill the gaps.

This meant reaching out to artists Beth Webb (from Books Beyond Words) and Grace Barnes (a Kingston University graduate), telling them our collective ideas, and asking them to produce some new resources.

Now the time has come to tell the world. No point producing resources (or indeed doing any kind of research) if you don’t tell people about it. They are there to be used, not to gather dust on a shelf. You, reading this blog, probably know about it already (if not, just click on all the links embedded in this post!). We’ve tried to take you with us, not just via this blog, but also on webinars, on Twitter (correction: X) etc etc.

Now the diary is filling up with events and talks. So here I was, just over a week ago, displaying our amazing new “Let’s Talk About Funerals” pictures at a stand with Books Beyond Words. It was the Innovative Practice in Palliative Care conference, attended by some 90 palliative care social workers. Would anyone come along? Would anyone be interested? These pictures were produced for use within learning disability services. Books Beyond Words are well known within that world, but how relevant would they be for palliative care professionals, who may not know (much) about learning disability?

Here's the answer. There was a queue of interested palliative care social workers. Not only did they flock to the pictures: They knew about us. They recognised me from the webinars I’ve presented with the PCPLD Network.

They LOVED the new pictures. “These will be soooo useful,” they said. Yes, useful for people with learning disabilities and their families (and almost everyone I spoke to could tell some stories there), but also for people who don’t speak (much) English, children, people with dementia, people… well, just any people, really.

I was moved by my meetings with these social workers. When you throw a stone into the water, you don’t always see how far the ripples spread. Hearing about some of the ripple effects of our work caught me by surprise. “After I watched your webinar, the staff made a memorial corner in a home where someone died, and it really helped people.” I am amazed and humbled.

So let’s throw a few more stones. Next month, we will share our new resources in a webinar – don’t miss it! (Thursday 16th November, 12.30-13.30, sign up here)

Can you get your hands on them? (Lots of people asked me this). Yes you can, but only if you promise to use at least 1 picture with at least 1 person, between mid-November and the end of December – and tell us how you got on. Email my colleague Sarah and she’ll tell you more: (you will have to promise not to share the resources yet, as they are still in trialling form).

So, it was delightful sitting at the Books Beyond Words desk. I was prepared for a quiet day and had brought lots of work to do, but we were kept busy! I did manage to check my emails though… and found that out of 196 nominations, my team had been shortlisted for the Kingston University People Awards.

A week later, I found myself at a champagne-filled event, along with Richard and Andrea representing the team – and we won! So here we are, proud of the award for best representing the university’s INCLUSIVE VALUES!


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