It was neither her wish nor intention to be a campaigner of any description. What might loosely be described as Dawn Astle’s centre of operations reveals as much.
There is just her, her iPad and a bundle of A4 spiral-bound notebooks in which she has logged the details of around 200 footballers whose wives, sons and daughters have been in touch, desperate for help and encouragement amid the fog of their loved ones’ unremitting struggle with dementia.
Even when the illness began to fray her father Jeff’s brain, at the age of 55, they lived with it. Their family home was full of life and laughter and when it claimed his life in January 2002, they were surprised to find he would be the subject of an inquest.
Dawn Astle wants brain degeneration in footballers to be declared an industrial disease
The local coroner had questioned why one so relatively young could succumb to such a disease and asked for a post-mortem examination on the former player’s brain.
The inquest established that heading — ‘industrial injury’ — had caused the damage.
The family left the PFA and FA to undertake the scientific research they had told her would then be launched and for 12 years that was that.
‘When a journalist called us in 2014 we thought we were going to find the results of the research,’ said Astle.
‘Instead he told us they’d discontinued it and never let us know. He started talking about how a number of NFL footballers had been found to have a brain condition called CTE (chronic traumatic encephalo-pathy). I remember scribbling it down — CTE. I wondered if that’s what my dad had had.’
No one had informed Astle and her mother before that interview — with the Mail on Sunday’s Sam Peters — that Jeff’s brain was still at Queen’s Medical Centre in Nottingham and technically theirs, if they wanted it to be tested for CTE, too. They were told about a leading neuropathologist, Dr Willie Stewart, who Astle rang.
Dawn’s father Jeff Astle began to suffer from dementia at the young age of 55
He helped her make arrangements for the brain to be delivered to him at Glasgow University. Dr Stewart established that Astle had, indeed, been suffering CTE, not Alzheimer’s disease, as detailed on his death certificate. And so it came to be that this most unassuming family became campaigners for research into possible links between brain disease and football.
‘It was fury that drove me at the start,’ said Astle. ‘Fury that the game my dad had given so much to could not even be bothered to ask questions when a coroner had shown there was a link.’
As the ‘Justice for Jeff’ campaign took hold, evolving into the Jeff Astle Foundation, the calls began which she and her mother have been fielding to this day. ‘People were asking us, “Could there be a link?” Telling us, “He did take blows to the head”,’ said Astle.
‘Other people are trying to find a way to get help with care. Others just need someone to listen. My mum might be on the phone to someone for two hours. I think people trust us.’
Gradually, there was progress. An invitation by FA chairman Greg Dyke to meet him at Wembley and eventually, last October, the publication of research showing a five-fold increase in the risk of Alzheimer’s, a four-fold increase in Motor Neurone Disease and a two-fold increase in Parkinson’s among former footballers.
The Astle family have campaigned for research into links between brain disease and football
‘I remembered that after Dad had died, the PFA had applied to have brain degeneration in footballers recorded as “industrial disease”,’ said Astle. ‘It was refused at the time but there was little to present as a case back then. There wasn’t the research we received last year.’
Now Astle became the one looking for help. Struggling to understand how to mount a new case, she recalled that Dr Judith Gates, based in the United States and the wife of former Middlesbrough centre back Bill Gates, had always said to call on her if needed.
Together, they have tabled a case which the Industrial Injuries Advisory Council (IIAC) are considering.
Dr Stewart will provide information in support. The case has also been strengthened by former Everton and Hull City midfielder Alan Jarvis becoming the second player after Jeff Astle ruled by a coroner to have died as a result of industrial disease.
‘This would be a major breakthrough,’ said Astle. ‘It would allow players to make a claim for Industrial Injuries Disablement Benefit.’
Depending on the severity of the illness, that could be an entitlement on a sliding scale of up to £180 a week. A verdict might not be imminent, though.
The IIAC, a panel of around 20 experts who meet monthly, is also currently examining cases relating to firefighters’ illnesses, workers allegedly exposed to the chemical silica and cases relating to Covid.
A coroner ruled Astle died from dementia brought on by repeatedly heading the ball
The FA issued guidelines eight months ago recommending no heading among primary school children, although Astle also desperately wants to see measures to ensure that young players are not unnecessarily exposed.
‘I asked (former FA chairman) Greg Clarke to introduce this but he said the FA can only advise, not put rules on training in place,’ said Astle. ‘This seems madness.’
Astle estimates that 200 families have been in touch now. She is aware of around 500 in all.
‘We desperately need someone to pull together a database and administrate it,’ she said. ‘This would help the medical profession, researchers — and coroners could use it when considering future cases.’
It seems extraordinary that this family should be operating with no financial or administrative support when the football industry employs hundreds of people on marketing and PR alone.
‘We’re not doing this to take anything out of it,’ said Astle.
‘We’re doing it because of Dad. He loved the game and the people who played it.
‘It’s what he’d have wanted us to do.’