“I felt something building and I could either internalise it and destroy myself, or do something”
Helen Findlay’s father James died of motor neurone disease (MND) in December 2005. Horrified by the lack of care he received at the end of his life, Helen is working hard to try to improve things for other families.
“I want to make a difference because my dad put his life on the line as an RAF pilot during the war. But when he needed help, it was found wanting”, she says.
“I’ve managed to turn that anger into a positive and not be eaten up by it.”
Along with her brothers Andy and Stuart and her sister Margot, Helen wrote a report in 2005 which made recommendations about how the system might improve, so other people like their father could get better treatment.
Last year she commissioned a new play, Fighting for Life, inspired by the report and their family’s experiences.
All Dad wanted was a hospice
“Dad died in a side room of a hospital. But what he really wanted – and tried to say at the time – was to go to a hospice. He knew he was getting worse, but the message didn’t get through.
“If he’d been in a hospice he would’ve had the right treatment.”
“I’m not sure I’m over the shock, not only because of what the disease did to him, but the way he was sometimes mishandled and the lack of common sense.
“Even at the end, they sedated him without telling me, so I didn’t get to look him in the eyes and say: ‘I’m here’.
“Two or three months after he died, I felt something building and I could either internalise it and destroy myself, or do something.”
Using my anger to change things
“We started writing the Findlay Report after Dad’s funeral to make recommendations to the people involved in his care. Since then, it’s been supported by the MND Association and has gone round the globe.
“But 13 years on, the issues the report flags are still very real. People are still talking about a need for the same things: the struggle for people at the end of life to get the care they need.”
Telling the story in a new way
In 2015, Helen saw a play at the House of Commons called Bounce Back Boy by Brian Daniels. Telling the story of a disabled boy, it had been commissioned by the National Council for Palliative Care to engage care and health professionals to look at the complex issues around palliative care.
“I spoke to Brian afterwards and asked if I could send him the report to see if he could turn it into a story for the stage”, recalls Helen.
A year on from their conversation, Fighting for Life will be performed for the first time on 25 January. Although the play is inspired by the report and based on the Findlays’ story, it includes other aspects of their lives too.
“I worked closely with Brian throughout the writing process”, says Helen. “And my three siblings – as well as other family – all met with him at the start of the process and shared their thoughts and memories.”
“Some of the things Mum used to say are in there! There are some light-hearted moments as well as the more serious messages.”
Why a play?
Helen is painfully aware how much the original issues she and her family flagged in the report are still an issue today.
“I still send out the Findlay Report every year. Governments and ministers change, so you have to keep working hard to get palliative care on the agenda. It’s a slow process.”
“I thought Fighting for Life would be another way to get the issue out there.
“Okay, it’s about my family. But I want it to be a catalyst for prompting people working in that sector to think about the issues. If it influences just one person and their behaviour, then it’ll be worth it.
“For me it’s about social justice. We only have one life, so when it comes to an end there’s only one chance to get it right.”
Fighting for Life was performed at the Marie Curie Hospice, Hampstead on 25 January, followed by a Q&A with an expert panel about the future of end-of-life care. The next performances will on 15 February in Cardiff and 20 February in Glasgow.
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