56. What is it like to listen to stories of people with learning disabilities and their treatment at the end of their lives?

As part of the Better Care Before Death group (in the DAPPLE project), we have to listen to stories about people with learning disabilities coming to the end of their lives and the treatment that they have been given. This is so that we can make things better for people.

A researcher comes to our meeting to tell the story about a person but beforehand they have spoken to Fred about the story. He then turns the story  into a picture story for us. This helps us understand and talk about it.

We have listened to 4 stories so far: Mike’s story; Tommy’s story; Alex’s story and Gem's. The stories are all about real people but people’s names have been changed (to protect their identity).

How does it make us feel when we hear the stories?

‘It makes me cross and upset when I hear about some of the care people were given, like not being fed properly or medication being left on the floor.’ Richard

‘It makes me angry, cross … sick to my stomach.’ Sunny

‘The doctors and nurses should be held accountable for the way they treat people with learning disabilities and autism. Because what would happen if it was them in that bed not getting treated right. Would they like it?’ Sunny

‘We don’t want this happening to us if we get ill!’ Sunny

‘Some of the stories we heard, they are good. Cos some of the carers, they understand people with learning disabilities and they are very caring and empathise with people.’ Sunny

‘So far people seem happier in their homes, in their own environment and not being in hospital – a different environment and a little bit scary for them. At home they are with their friends and people who know them well. Its when they go into hospital, things seem to go a little bit wrong. When I hear the good stories, it makes me feel happy. In hospital they seem to get neglected a bit and that upsets me.  I start to think of it outside of work. It makes me a bit worried.’ Richard

‘Hopefully the work we are doing will make things better for people in the end.’ Richard

How do we look after ourselves when we feel upset or worried by the stories?

‘We are a group of people from all over England and we meet once a month online. We talk about the stories and we listen to each other to see what people have to say about it. We help each other to understand it and make some suggestions about what was good and what wasn’t good.’ Richard

‘We can speak to people like Jo, Andrea, Irene and Fred.’ Sunny

‘There’s a lady we can speak to called ? She is a psychologist. She’s here to speak to the researchers who go and meet people just to check how its affecting them. But she can help us too.’ Richard

‘If people in the group get affected and they want to talk to someone, they can talk to Christina who has a green background behind her in the zoom meetings. She can meet with people who want to talk more about the stories they have heard and how it has affected them. They might be upset or cross with what they have heard. They might have experience and they want to express their emotions of how they feel. They might have experienced the same situations in their life.’ Sunny and Richard

‘If I am thinking about it at home, I talk to my support staff at home who understand.’ Sunny

‘I talk to friends or my mum, I do’ Richard

‘I do the things I like doing for distraction. I play on my ipad. I play Playstation. I like cooking and obviously I like watching wrestling and writing music.’ Sunny

‘I go for a walk or watch television. I like comedies, I do, like Dad’s Army because they make me laugh’ Richard

‘Its important as it’s a distraction, if we have these things… we keep thinking about people dying. It’s a good coping mechanism.’ Sunny

‘Its important to try and take your mind off these things, cos it can start to affect you a bit too much.’ Richard

‘And its good for your mental health… to have good mental health’. Sunny

‘A word of wisdom to health care workers… make CHANGES! Because that could be you or YOUR family member’ Sunny

‘We are trying to make lives better for people with learning disabilities at the end of their lives so they get better support. But its quite hard and shocking hearing the stories…and disgraceful a little bit.’ Richard

Written by Sunny Sokhal and Richard Keagan-Bull (supported by Jo Giles), Research Assistants at Kingston University.