Written by Prof Irene Tuffrey-Wijne, Project Lead, Kingston University.
“Do not forget about me,” Stuart Hasler said just before he died.
And how could we? How could anyone, after watching and listening to Stuart’s story at last week’s webinar? It was one of the most moving moments in our two-year project, sharing in the story of the man whose name we had said so often (“We are researchers on The Victoria & Stuart Project”). We knew some of his inspirational story – how he took control of his own end of life care plan, posthumously winning the Linda McEnhill Award for outstanding end of life support of people with a learning disability. But watching the story of his life, his dying and his death unfold on our screen was… well, we were lost for words.
We are coming towards the end of our project, and we wanted Stuart and Victoria’s stories to book-end it. They were supported to live the last months and days of their lives in uniquely individual and self-chosen ways. The story of Victoria, who had profound learning disabilities, was told in our very first webinar. It deeply moving and inspirational.
Now, almost two years later, we had asked Chris O’Donnell (Stuart’s nurse from Enfield Learning Disability Service, who’d known Stuart for years) to put together Stuart’s story. He put together a film with clips of Stuart’s life. We see Stuart showing us around his house, telling us of his pride to have achieved independence. We watch him as he becomes a fierce advocate for people with learning disabilities, fundraiser, traveller.
We hear how he then turned up at an end-of-life care planning workshop (run by the Learning Disability team) because he knew his health was failing and he’d realised what the score was. We listen to his nurses, support workers and others whose approach to their jobs changed because of his refusal to have anything but person-centred care. Not a tick-box involved. We watch, dumbstruck, as they tell us how he raised funds for his own funeral, because his savings were insufficient (the funeral directors told him it would cost more, due to his large size).
The film arrives in my inbox and I watch it at home. Just before midnight, I email my team:
I wouldn’t usually send work emails at this time of night, but… I’ve just watched the final version of the webinar video… it just stopped me in my tracks. It’s sooo powerful. What an honour to have our project named after him. I think it will be good for all of us involved in the webinar to watch it beforehand, so we can focus on questions/comments coming in.
So we do. I watch it with Richard and some other colleagues at work the next day. Hoping, I admit, to write down his reflections and thoughts (might come in handy for this blog). But at the end of the video, we just stare at each other with moist eyes. Lost for words.
On the morning of the webinar, the rest of the team is in the office – including David, my co-chair. We all gather round the screen and I press PLAY. When the video ends, once again my eyes are wet. I’m not alone.
Then we talk. What is so powerful about Stuart’s story? Just some of our thoughts…
The first part of the webinar is not about Stuart’s death, but about his life. That’s so important. It reminds us that we can ONLY get end of life care right if we know about their life.
More than 20 professionals wanted to see him every week, and he wasn’t going to let that happen… He decided who he wanted to see, and when. It meant that all these professionals had to work together and support each other’s roles
The nurse who explained how Stuart was most able to talk about his health when he was at the football grounds, watching a match – because that’s where he felt relaxed
The way he was clearly known and loved in his local community, who raised so much money for him – the staff at his local bank, the shop keepers…
How all of Stuart’s story (and by extension, all our stories) are really about relationships, being known and loved
I could go on. I urge you to watch Stuart’s story, and watch it again, and again. Watch it together if you can, and talk about it. What strikes YOU? What do Stuart and his team teach YOU? I watched it four times now, and each time I learn something new.
Stuart’s story is unique, but it reminds me that EVERYONE’S story is unique. He speaks for all of us, and in particular, he speaks for people with a learning disability. He teaches us that we must listen to each person, whoever they are, however they communicate, whatever matters to them.
“Don’t forget about me”.
We won’t.