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

This is it. The Victoria & Stuart Project officially ends this week. This final blog post is a chance to reflect on the past two years, what we have achieved together, how far we have come. But where to start? I could write a book! (Perhaps I should…)

Last month I wrote about the launch of our new toolkit. The 200+ people who worked together on this, with people with a learning disability at the centre. They guided us, told us firmly what belonged in the bin rather than in the toolkit, and cheered when we got it right.

I have done research around death, dying and learning disability for over two decades. When we started this project two years ago, I thought I knew quite a lot. But now, I realise more than ever just how much I have left to learn. Perhaps the best way to reflect on the past two years is through some of the anecdotes that stand out for me – leading to a few Top Tips For The Future.

“How can we plan for something we don’t know when and how it’s going to happen?”

This was Leon, one of our colleagues with a learning disability. It was early in the study. Leon was reflecting on what he’d heard people with learning disabilities tell us in focus groups. This conundrum was indeed at the heart of the challenge we faced. We didn’t know it then, but we know it now: The tools that were most helpful were those that enabled people to explore the ifs and buts, rather than to make definitive choices. It happened again and again that Leon, Amanda, Richard and David were able to put their finger on the essence of a problem, an issue, or a way forward.

TOP TIP: Include people with a learning disability in your team of researchers. Yes, it can take years to work towards this (funding, HR systems…) but it really is the way forward.

“I don’t like that... Put it in the bin!”

Look at this! Isn’t it wonderful? “My Fold Out Funeral Plan”! I was rather proud of it. I’d been with the All Together Group and listened to their struggles with Easy Read end-of-life care plans. Too many pages, too overwhelming, too confusing. So here’s a nice and simple thing, with big engaging images. You can fold it out or keep it closed. You can write or stick pictures on the back. I’d spent my weekend making it look nice and colourful. I’d even created sheets of cut-out pictures to choose from. Here is the way forward! This wonderful new approach will go up in lights and universal celebration!

Only it didn’t. When we tried to demonstrate, the All Together Group looked on in confused silence. Our carefully crafted Fold Out Funeral Plan was quickly despatched to the bin. I tried to be delighted about this. Look at us, taking co-production seriously! But I do admit to being more than a little disappointed – as well as worried. With the weeks and months ticking past, it was back to the drawing board.

TOP TIP: Listen. Really listen. Then be prepared to change.

One size does not fit all

There is a coda to the Fold Out Funeral anecdote. A month later, one of the group members came back with a fully completed Fold Out Funeral. David had fished it out of the bin and spent weeks thinking about it, cutting out pictures, sticking them on and writing things down. And this was someone who, at the start of the project, really didn’t want to think about funerals.

TOP TIP: Different people need different approaches! You need a toolKIT, not just one tool.

TOP TIP: When someone says NO, respect it – but keep the door open.

“This is the first time I feel my opinion matters.”

One of the parents on our Advisory Group said something along those lines. They had been on various advisory groups before, alongside professionals. Often, they said, they felt like box-ticking material, trying to fit in to existing structures, and with the professionals not really prepared to change their approach.

I’m not sure what was different about our meetings, but it really brought home to me again that there is no point in having “stakeholders” on your project unless you are truly prepared to let them hold a big stake. It’s back to “be prepared to change”.

TOP TIP: Know who your stakeholders are, and ask their opinion. It really matters.

“We turned dying into a celebration”

A blog post is not a book, so I will stop here. It’s the one-liner that has stayed with me. It came from Jordan (one of the All Together group members) when he took the microphone at our launch conference last month.

It encapsulates our experience. I’m no fan of dying. We can’t pretend it’s easy. This project wasn’t easy. There were tears, there was anguish. But I hadn’t expected there to be quite as much joy and laughter. Death connects us with life, and with the joy of living. It was the people with learning disabilities who encouraged us to have music, games and fun – despite (or perhaps because of) the difficult topic. It made it possible for us to talk about dying.

TOP TIP: Have fun! (and don’t take yourself too seriously)

What’s next?

The toolkit is here. You can use it. Please do! I hope it isn’t finished, because it really is true that one size does not fit all. It hasn’t been tested widely enough. It took so long to develop the tools, we didn’t have time for extensive trialling. We still have lots of questions.

• Is it useful for people with severe and profound disabilities?

  They were part of our All Together Group by proxy (parents and support workers), but I’d like to know how things work in real life. Tell us!
  

• Who uses the toolkit?

  It was aimed at support workers in learning disability services, but do they have the time and confidence? Tell us!
  

• Is it useful for people without learning disabilities?

  I think it might be. It’s certainly been useful for me (having had to plan my sister’s funeral a few months ago, with no warning and within days, I wish we’d looked at some of the pictures together). Tell us!

  
  

• We talked about PLANNING end of life care… but how about DELIVERING end of life care?

  Actually, that last question is very much alive. Next month, we will start the DAPPLE project.

The DAPPLE Project

It’s a brand new study, looking at how services provide palliative and end of life care for people with learning disabilities. We’re taking all of the lessons learnt from the Victoria & Stuart Project. We will employ four people with learning disabilities on the team. We will listen and learn, from people with a learning disability, from carers, from professionals, from a host of other stakeholders. We will go into four different parts of the country (Croydon in London; Milton Keynes; Leicester; Kirklees in West Yorkshire) to look at what works and what doesn’t work. It will be three years of hard work. Let’s hope we’ll have fun.

So watch this space… There will be a new website (www.dappleproject.com – not yet live). Keep following us on social media, so you’re kept in the loop:

X @TuffreyWijne @VictStuProject #DAPPLEproject

LinkedIn/Facebook/Instagram Irene Tuffrey-Wijne

THANK YOU

To everyone. Too many people to mention, but a special wave and thank you goes to our team of researchers who kept the show on the road: Becky, Richard, Amanda, Leon, David, Jo, Andrea, Sarah, another Sarah, Nicola, Meg, Faye, Rhidian, Gemma. Extra claps for Andrea, for keeping this website and blog going.

A very big thank you to the National Institute for Health and Care Research, who funded this study.

And finally, thank YOU for following us. We do research to make a difference, but the real people making the difference? That’s you, out there, reading this.