10. I love conferences!

Hello, I’m Amanda Cresswell. I have a learning disability and I’ve also had cancer. I’ve been a researcher at the university for 15 years. I’ve worked with Irene on lots of studies, like the Breaking Bad News study, the Talking About Dying study and the Victoria & Stuart Project. Now we’re doing the DAPPLE project together.

It’s no good doing research if we don’t tell people about what we’ve been doing. So we give talks to lots of professionals who are involved with people with learning disabilities to make decisions about the end of their life. Like doctors and nurses.

I’ve been to lots of conferences. I have travelled all over Europe with Irene. I talk about my own experience of having cancer. At yesterday’s conference I talked about my mum dying when I was a teenager. It was hard because I didn’t know what was happening. My mum hadn’t told me that she was very, very ill. So I tell everyone how important it is to talk with us about dying. Even if it’s upsetting, because if you don’t know what is happening and then something happens to your mum or dad, that would be even more upsetting.

Amanda shares her story at the conference

The conference was for nurses and doctors who work in hospices and hospitals with people who are dying. Not just people with learning disabilities, but all people. We showed them our end of life care planning toolkit. We also told them we are doing the DAPPLE project. The room was packed and everybody was impressed that people with a learning disability can do research and help other people. We showed them how we can work together and I even got people dancing! Afterwards people kept stopping me and saying well done.

We surprised everybody by doing this together. With the right support we can have amazing lives! If someone tells us that we can’t so something, we prove them wrong. We can always try and do things in a different way!

Video of Amanda and Irene presenting at Palliative Care Congress 2025 in Belfast

I love conferences because I like meeting lots of different people from different countries, and learn new things. But also to help people to do their job, because they might come across people with a learning disability but they don’t know how to react to them. So we can teach everyone.

I’m writing this blog, sitting with Irene and Pierre in a park in Belfast. Pierre is our team mascot. He’s been great company! We gave a workshop at a big conference here yesterday. We should have been home by now but our flight got cancelled because of a fire at Heathrow airport! So we’re making the most of some extra sightseeing. I also love to travel! Even if our flight gets cancelled.

Our team mascot Pierre

Written by Amanda Cresswell, Research Assistant at Kingston University London

PS by Prof Irene Tuffrey-Wijne:

Amanda was a brilliant conference speaker, as usual. It is so much better and more impactful to give presentations together. After our workshop, we were constantly stopped by congress delegates telling us how fantastic it was, how inspired they were, and (crucially) that they now want to use the resources that can support people with a learning disability who are approaching the end of life. So THANK YOU Amanda – couldn’t have done it without you!