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49. Looking back and looking forward

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


The end of a year is a time to stop and take stock. What can we see? Looking back at our year on this project makes me think about the lives and deaths of Victoria and of Stuart.

Ten years ago

Victora Willson died a decade ago, on 22nd September 2013. Victoria lived a full and fullfilled life, notwithstanding her profound learning disabilities. This was thanks, in no small part, to her family and the people supporting her, who were able to hear Victoria’s voice and act on it. That listening continued during the final years of her life, when it was clear that she was dying. Victoria lived those last few years, the last weeks, the last days and hours of her life – and then she died – in exactly the way she wanted. Victoria couldn’t speak, but her family and friends knew how to listen and speak for her. After she died, her mother Jean said:

“We, her family, look back now with peace and pride in being part of the team that enabled Victoria to live happily and die majestically.”

You can listen to Victoria’s story here.

Three years ago

Stuart Hasler died three years ago, on 4th December 2020. He, too, had learning disabilities and he, too, lived a full and active life. Stuart was able to verbalise what mattered to him. When he realised that his health was deteriorating and he was going to die, he started making plans together with his circle of support, hospital staff and community staff. This ranged from getting good support at home to saying goodbye to old friends, organising a thank you party for his personal assistant, celebrating Christmas early (as he knew he wouldn’t live to see it), and fundraising for the funeral he wanted. Just before he died, he said that the last few weeks of his life had also been the best few weeks of his life.

If you want to listen to Stuart’s story, sign up to our webinar on 1st February 2024, 12.30-13.15 (here).

One year ago

In the busy-ness of working life, it is quite easy to look at all the things you still have to do, and forget to appreciate how much has already been achieved. It is amazing to think that a year ago, we had only just completed our literature review and our focus groups. The TOOLKIT was still empty. Which end of life care planning resources would go in there? What guidance?

In one year, we…

  • Got together the All Together Group (9 people with learning disabilities, including our own 4 colleagues; 15 family carers, support workers, services managers and professionals). Seven months of regular meetings and workshops. Serious work, fun, games, tears, laughter – and results we could not possibly have achieved on our own.

  • Developed a range of new resources. Discovering that there was quite a gap in the market, we needed to start filling it. We pondered, tried, tested, threw out, started again, commissioned new pictures, gave feedback on drafts, and finally gave our thumbs up.

  • Set up a system for trialling the resources in real life. (REAL LIFE: that probably includes you, reading this!). We recruited support workers willing to test the new pictures with the people they support, and held a series of online training sessions for them.

  • Told the world how we are getting on. We travelled to conferences in the UK and abroad (the EAPC Congress in the Netherlands was a highlight); we hosted webinars; first we tweeted and then we X-ed; we blogged every week (a special shout-out and thank you to Andrea for organising and contributing to this blog)… the list goes on!

Right now

So here we are in December. Just looking at that list of what we’ve done in 2023 is enough to make me feel rather tired! It’s no wonder that we sometimes feel like swans, frantically paddling under the water whilst trying to look calm and composed on the surface, and wondering whether we will actual manage to get to our destination.

Doing a co-produced project means listening to each other, and if needed, changing direction. We had carefully planned how we thought people should test our resources, keeping in mind our looming deadline (the project officially ends this spring, but we will probably extend it by a few months). It was the suport workers who told us loud and clear that Christmas is not a particularly good time to talk with people about their funeral plans! So, a sneak preview to next year…

Looking forward

We have extended the trialling phase by a month, giving people until the end of January to give us feedback. We will then be able to finalise the resources, including final versions of the pictures and of our guidance documents (that will include producing some more video demos). We are hoping to launch our toolkit in June 2024, and make it freely available online.

Then we’ll have to think about project endings, staff moving on, starting new projects… It will be another busy year! So, let’s all take a bit of a breather.

We wish you all the very best for this festive season. I know that for some of us, Christmas is not the easiest of times, perhaps remembering people we have loved, who we miss. Whatever your situation, I hope you will find some rest in the weeks ahead, and a sense of peace.

We will take a break and will be back on this blog on 23rd January 2024.

Oh, and if you’re interested in actually MEETING our team at Kingston University and seeing what we do, you are very welcome to our Open Afternoon on 8th February. We are also running a FREE research training course for people with learning disabilities (April-June 2024). You can read all about that HERE.

See you in 2024!


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