Written by Jo Giles, Research Assistant, Kingston University.

It’s not often you have to lug a huge plant across rush hour trains and busy London streets for work… but that’s what one of our team members (Sarah) did to help create an interactive activity for our ‘Drop in’ table at Learning Disability England’s London 2024 Conference!

Our interactive session involved asking people to draw and write:

1. What they’d like people to remember about them e.g. one person said music (and they then added that they didn’t want people wearing black at their funeral. They wanted people to wear colour). Another person wanted to be remembered for being good.

2. How they would like people to remember them. One person said they wanted to be remembered through a FUNeral! Clearly fun was important to them and for those they loved.

Once people had written these on their heart pieces of paper – well it was Valentine’s Day after all! They stuck them onto the big plant for others to read and know about.

I love hearing different people’s wishes! These conversations help me discover and learn so much more about people, how different we are as humans, our values, and what is important to each of is – which is so wonderfully interesting and important.

For example, Richard explained to some of our visitors that he would like people to walk past his flat at his funeral so that they can remember how he lived independently. That’s really important to Richard but unless its written down, it may not be remembered by people and actioned.

That’s why I love our work - we are campaigning for people to be supported in having these important conversations (if they want to) because these conversations inform how we live our lives, how we end our days, and they remind us of what and who is important to us now whilst we are living life.

Learning Disability England’s conference is known for a being a conference that is vibrant and well-attended by self-advocates (as well as providers) and given that our toolkit is going to be for Support Workers to use with self-advocates, it seemed a perfect match to us!

Our team, Richard Keagan-Bull, Leon Jordan, Sarah Gibson and myself, spent the day in back-to-back deep conversations with some amazing people! Here’s just a few of them:

• Sarah who runs the VIP Red Bag project which is an emergency bag that has people’s health passports in it (based in Wakefield and spreading them nationally).
  

• Christine from Together Matters which is all about future planning.
  

• Lucy from Changing Our Lives who works with great integrity in upholding and supporting people’s rights. She and Leon spoke for a very long time!
  

• Sally and Michelle from Paradigm who run the Gr8 Support Movement and can help us tell Support Workers about our toolkit.
  

• Self-advocates who were looking at the illness cards.
  

• A lovely woman from Active Prospects who has been following our work and heard of us through VODG.

These connections that we have created today are crucial in how we maximise getting our toolkit out into the world.

They are a reminder to us of the importance of powerful partnerships and celebrating what other people have created. Together we are stronger, as Learning Disability England says. And actually, this is really important for our research work.

We have co-produced this amazing toolkit BUT it’s no good if we work in a silo. We need Support Workers to find out about and use the toolkit. We want people with learning disabilities to be supported in having these important conversations around end-of-life care. And the best way for us to do this is to link with others and spread the word together!

As Learning Disability England says, we are ‘Stronger, louder, together!’

Thanks for an inspiring day Learning Disability England! And thank you to the rest of our team for being a constant source of inspiration and a joy to work with! Together we are indeed stronger!