

Gary Bourlet – Member and Engagement Lead for Learning Disability England

We speak a lot about what it means to lead good lives but not much about what it means to have a good death.
People find death more difficult to talk about.

To me, a good death would be a death that involves choice. I was able to plan what I wanted to happen before, during and after.

For example, I hope to be able to make a will before I die and organise insurance to pay for my funeral.
I would like to have a colourful funeral, nothing too dark and depressing! And I plan to be buried next to my mum.

I want to be able to have conversations about this with my family and have their support on this.

Maybe you want to be cremated, and your ashes scattered in the sea, or maybe you want to have a holographic burial or a Viking ceremonial.
We all want different things, and we need different levels of support to be able to make these things happen.

Lots of people might not know what they want at all yet, and they need to help to get thinking about this.

This is what the Victoria and Stuart Project is all about.
It is about finding the best ways to help people with learning disabilities plan for the end of their life.

They wanted to make sure that people with learning disabilities get the right care and support when they are ill and going to die.

As part of the project, they wanted to develop a toolkit to support staff to plan together with people.
The toolkit is now live! It includes loads of resources and approaches that staff can use to have these conversations.

You can watch a video where Amanda, Leon, and Richard present the whole project here.

People that are unwell will probably want to think about DNACPR. DNACPR stands for ‘do not attempt cardiopulmonary resuscitation (CPR)’.
A DNACPR recommendation means that if a person has a cardiac arrest (heart attack) or stops breathing suddenly then CPR is not likely to be appropriate.

We developed an interactive information pack together with Turning Point all about DNACPR.

It is for people who have a learning disability and anyone else who might find it useful.

People may read it with somebody else – maybe a friend, a member of their family, or a support worker.
It may also be useful for people who work in healthcare, or those who provide support to people with learning disabilities.

I think it is great that these resources are being developed to make it easier for us all to talk about death.
Talking about and planning for it can help make it seem like a less frightening thing.

It can also help make it more likely that the end of our life happens in the way we would like.