‘Together, as a movement, we were hard to ignore’
Catherine and Chris’s son Matthew died suddenly and unexpectedly in November 1991. He was just 21 and apart from having epilepsy, otherwise fit and healthy.
Although Epilepsy Bereaved (now SUDEP Action) was formed by five women, united in grief, it’s important to remember the part played by others in the charity’s early story.
Catherine Brookes was one of those five charity founders – along with Jane Hanna, Sheila Pring, Sue Kelk and Jennifer Preston. She said: “People often say it was about the five women, but the three fathers – my husband Chris, plus Sheila’s husband, Colin and Sue’s husband, Ray – were absolute stalwarts because whatever we wanted to do they were there, supporting us and the group in their own indomitable ways.”
Catherine and Chris’s son Matthew died suddenly and unexpectedly following a seizure in November 1991. He was just 21 and apart from having epilepsy, otherwise fit and healthy. Catherine said: “Matthew wasn’t diagnosed with epilepsy until he was 18. We were told he died of status epilepticus which we didn’t believe. It made me determined to do something about it, because his medical care had also been really poor. I remember the specialist looking at him and saying, ‘take the pills, forget about it and come back in a year’. It was outrage that drove me on, of a young, fit, healthy person – a bright and clever person – passing away and it didn’t seem to matter to anyone.”
It was Catherine and Jane Hanna who initially worked to get Epilepsy Bereaved off the ground as a support group. Other families began writing to them to explain they’d lost someone 10 or 20 years before, and still didn’t know why they had died. Catherine said: “I was driven. I used to look at myself and think I’ve just been given this energy to do it all.”
Those involved in setting up Epilepsy Bereaved were learning as they went, but they had a good mix of skills. Catherine drew on friends and associates for the design of a charity logo and help with printing and photocopying – important things in an era with no internet, email or mobile phones, where communication with supporters often relied on the Royal Mail and ‘standing in post office queues to get things weighed and sent off’. Meetings were held in the founders’ homes and charity post arrived along with personal mail, until a PO Box was set up to keep things separate.
Catherine said: “in those days, just finding someone who had gone through the same experiences meant so much to people. As somebody once said to me ‘I can go away now and live the rest of my life knowing it wasn’t my fault’. Imagine going into a room and finding your loved one has died and you have no idea why and others were putting it down to natural causes. There was so much uncertainty.”
Despite constantly being told by health professionals that ‘epilepsy deaths don’t happen’, Epilepsy Bereaved brought together all these families with the stories to prove otherwise. In isolation, they had no voice. Together, as a growing movement, their personal experiences were hard to ignore.
Catherine said: “I was recently in a supermarket when suddenly a girl went down beside me and started fitting. An ambulance arrived, and I went off quite shaken. Later, when I was outside, I saw the paramedic and thought I’ve got to say something so I said ‘Look, you do know that you can die from seizures?’ and he said ‘yes’. He told me about the training he’d received, and I thought ‘you’re trained? – how wonderful.’ Medical staff never used to receive training – and I thought to myself, ‘we did that, SUDEP Action did that’. We got the medical profession to listen to us and to change their mindset. I’m heartened now when I hear it being acknowledged that you can die from epilepsy because I remember the times when the authorities and medical professionals denied it.”
