“He put his life on the line, but when he needed help, it was found wanting”
Helen Findlay’s father James died of motor neurone disease (MND) in December 2005, without the high-quality palliative care and support that we believe is everybody’s right. Helen now does all she can to promote improvements in end of life care, including through the Marie Curie Expert Voices Group.
Love and war
“Dad grew up in the Scottish Lowlands in the 1920s and 30s, which was tough. Aged 19, he joined the RAF and became a Lancaster pilot. A lot of his friends didn’t make it, while he looked death in the face each time he flew out. He was also asked to represent the RAF at funerals, as he looked good in a uniform. You can imagine being so young, going to funeral after funeral, affected him a lot.
“He met my mother, who was in the Women’s Auxiliary Air Force, when he was based in England and, after the war, they concentrated on family, working hard and getting a house.
“My mother developed dementia in her late 70s and my father became her main support. Then, about eight years later, my father was obviously deteriorating. He was eventually diagnosed with MND and passed away after about seven weeks, which was an enormous shock. Not only to us, but the medical professionals who were supposed to be experts.
“The consultant didn’t take the trouble to explain the diagnosis and Dad couldn’t hear properly. He didn’t realise he had a terminal illness – he thought it was something he could get over. Things were promised, then nothing happened, and my father deteriorated rapidly. My mother’s home carers could see my father was getting worse – we all could – but the consultant’s team just didn’t get it. Their tramline thinking was that he had two years and we were just being hysterical after the diagnosis.
Decisions, delays and distress
“Everything was too late in catching up. For example, we had to tell them about his saliva problems and the GP eventually suggested travel-sickness patches, but they would have taken two weeks to order, so family across England had to visit their local chemist.
“A month before Dad died, having always vowed he’d never go into a nursing home, he agreed so he could be with Mum, as we just couldn’t get the care for both at home. As long as my mum was with my dad, she didn’t mind.
“They were together a couple of weeks before the doctors decided Dad should go into hospital and have a PEG feeding tube. But what he really wanted – and tried to say – was a hospice, as he knew he was getting worse and his voice had gone. I’ve learned that hospital is the wrong place at that stage. There’s nothing you can do because MND’s got such a grip. If he’d been in a hospice he would’ve had the right treatment.
“When he was admitted to hospital, he was left on a trolley, flat on his back and unable to breathe. Then he got put on a general ward, which didn’t have links with a palliative care nurse and it’s then you realise nobody’s talking to each other.
The impact of palliative care
“Four days before my dad died, a palliative care nurse was touring around, so my sister flew down the corridor to her. The nurse hadn’t been told Dad was that bad – even though he’d been in hospital 10 days.
“In those final four days, you could see the difference she could make by talking to nurses, doctors, Dad, and us – which nobody else had done. She talked about what was happening, what we could do and that a hospice was the right place, but by then my dad was too ill to be moved. At least her input got him a side room, which he should have had days before.
“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’.
Finding light in the darkness
“Two or three months after he died, I felt something building and I could either internalise it and destroy myself, or do something. We produced The Findlay Report to make recommendations to the people involved in his care, but it’s since been supported by the MND Association and gone round the globe over the past 10 years.
“I’ve not had bereavement counselling – I’ve tried to manage it by throwing myself into improving palliative and end of life care for everybody.
"I’ve been on the Marie Curie Expert Voices Group for almost five years, as well as addressing various audiences – including parliamentarians – and I’m finishing my PhD on ‘service-user involvement in palliative care’.
“I want to make a difference because my dad put his life on the line and then, when he needed help, it was found wanting. I’ve managed to turn that anger into a positive and not be eaten up by it.”
If you or a loved one is living with a terminal illness, Marie Curie has a range of online information and support, as well as a Support Line (0800 090 2309), which is open Monday to Friday 8am to 6pm, and from 11am to 5pm on Saturdays.