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

Where to start, when doing a study to find out more about x or y or z? The answer is obvious. You look around to see if anyone else has already answered your question.

That’s why most studies start with a “literature review”. There are data bases to help you search through journals that publish research. You might also search the internet and anywhere else you can think of, to see what else you can find: policy guidance, newsletters, blog posts, perhaps even YouTube videos… (that’s called “Grey Literature”).

We asked our research partners at Open University (Professor Liz Tilley and Dr Lorna Rouse) to do just that. They went even further, and sent out a national survey to ask organisations that support people with learning disabilities or people who are dying, asking to tell us about any formal or informal ways in which they help people with end of life care planning. They got 93 responses and heard about 28 different resources.

We then worked with Liz and Lorna to do a quality assessment of everything they found. We ended up with a shortlist of guidance and resources. You can find the resources here.

This week, Richard and I hosted a webinar where Liz and Lorna presented this shortlist. If you missed it, you can watch it below.

Just a few things that have struck me:

• There were quite a few resources for people with learning disabilities to use (such as easy-read forms), but many of these seemed to have been developed in isolation, in response to local need. That sounds to me like a lot of people re-inventing wheels.

• It was hard to find information about how these resources were developed. Where they underpinned by research? Were they tried and tested? Possibly not.

All this made us realise how important our study is. Guidance and resources do need to be supported by robust development methods, involving people who will use them, tried and tested. There are some excellent resources out there, and a lot of great guidance. Our task is to look at all this with our All Together Group, try things out, perhaps tweak things here and there, perhaps develop some additional resources, certainly develop additional guidance, and then send it out into the field for further testing.

After having looked at several easy-read forms with the All Together Group, we are now left with new questions:

• How are people actually using easy-read end-of-life care plans?

Are they mostly for:

• Giving information/explanations?

• Prompting discussions?

• Talking through choices?

• Recording choices?

We will try and look more into these questions in the next couple of months. Do you have any thoughts on this? Then please get in touch with us.

Thank you Liz and Lorna for doing this brilliant and important ground work!