The death of Nobby Stiles (R) from dementia and revelation that Sir Bobby Charlton is suffering from the disease has propelled the issue of football's dementia crisis back up the agenda.
Credit: GETTY IMAGES
It has been exactly five years since a memorable afternoon spent drinking coffee and eating home-made ginger biscuits across a kitchen table in Sussex with Bryony Hill, wife of the incomparable Jimmy.
“I will cry a lot, so just bear with me,” she said. “To think such a vibrant, dynamic, intelligent and busy man is now buckling under this ghastly illness is absolutely heart-breaking. There’s no handbrake. The future has no particular pattern except downwards. I miss him dreadfully.”
Bryony also shared the cruel guilt she felt at the inevitable decision to place Jimmy in nursing care, as well as her suspicions about all the footballs he headed during his playing career. And, while there were indeed plenty of tears as she outlined the harrowing toll that dementia had taken, there were also smiles and laughter in recalling the many good times. Jimmy Hill died exactly a month later.
After then attending a 50th anniversary celebration of the 1966 World Cup winners – and seeing up close how dementia was sweeping through a team of men still mostly in their seventies – it was clear that football had a major problem, and so The Telegraph’s ‘Tackle Football’s Dementia Scandal’ campaign was launched.
There have been a series of landmark moments since then, most notably the University of Glasgow study last year which finally confirmed the link between football and neurological disease, but the death of Nobby Stiles, who was living with dementia, and the disclosure that Sir Bobby Charlton was suffering from the disease has propelled the issue back up the agenda.
Dawn and Laraine Astle have spearheaded the campaign to highlight football's dementia crisis so heroically since 2002 when an inquest ruled that Jeff Astle’s death at the age of 59 was caused by heading footballs
Credit: DARREN O'BRIEN
Yet amid the blizzard of statistics and medical opinion, there are also raw human stories which yearn to be heard. Every one is unique, but painful similarities would crop up during hours spent in living rooms, care homes or on the telephone with the families of former footballers with dementia. They are among the most inspiring people you could ever meet.
They are people like Rachel Taylor, whose father Rod Taylor, the former Portsmouth and Gillingham wing-half, died in 2018 at the age of just 74. “Dad would fall, be up all night, get hallucinations,” she told me. “It was 24/7. He hated what was happening. When things were getting bad, he would point at his head with his two fingers. Mum developed Parkinson’s, I believe, through looking after dad.”
They are people like the family of Ernie Moss, Chesterfield’s record goalscorer, who has been living with dementia since his late fifties. Moss could no longer speak when I spent a morning with the family in 2017 but could rattle through sudoku puzzles in seconds. He is now in full-time residential care but, like so many people living with dementia during the Covid-19 lockdown, denied the visits of his loved ones.
They are people like Natalie Parkes-Thompson, the daughter of Blackburn Rovers legend Tony. She gave up her job as a primary school teacher to care for her father but, with two children under the age of three, reached a point where the most heartbreaking choice had to be made. Parkes is now in residential care. “He could put the hob on in the middle of the night – it was the danger aspect in keeping everybody safe,” she said.
They are people like Amanda Kopel, whose campaigning has inspired a law change for dementia care in Scotland but who lost her childhood sweetheart Frank when he was 65. Frank was diagnosed with dementia at the age of 59 – “it came hell for leather”, she said – and he would be left partially blind in one eye, suffering hallucinations and unable to remember how to feed himself.
They are people like Chris Sutton, who has been speaking up with such courage over recent years about his father, Mike, who also played professionally for Norwich. “My dad is seeing out his final days in a nappy on a bed – I defy anyone to not be upset if that was their parent,” he said.
Tony Parkes and his daughter Natalie Parkes-Thompson – Natalie has cared for her dad, the Blackburn Rovers legend, and wants support for all former players and their families
They are people like Sue Lopez, the pioneering former England striker, who I spent a wonderful afternoon with shortly before lockdown in her Hampshire care home. “I am sure my dementia has been caused by all the heading,” she said, clasping my hand. “I did get headaches. I did get concussions. It’s why I gave up. It’s too late for me but don’t let young kids head it. And limit heading in training at all ages.”
They are people like the family of Stiles, whose granddaughter Caitlin was moved to write her law dissertation on the subject of neurological disease in football and who made such an impassioned call this week for urgent action to help former players, or Charlton, the most celebrated of all English footballers, who gave their blessing for his dementia diagnosis to be made public in the hope that it would help others.
They are people like Sarah Jarvis, who agreed for her father Alan’s brain to be donated last year in the hope that it could further medical knowledge after seeing her hero decline in front of her eyes. “He should still have been in the prime of life but his personality changed totally,” she said.
And they are, of course, people like the Astles, who have spearheaded the campaign so heroically since 2002 when an inquest ruled that Jeff Astle’s death at the age of 59 was caused by heading footballs. To catch sight of Dawn Astle at work over these past five years, invariably in her living-room with nothing more than her iPad, a note-book and mobile phone, is to witness a force of nature.
She laughs as easily as she cries but, sitting in her mother Laraine’s living room beneath a picture of her father scoring the winning goal in the 1968 FA Cup, she once told me why she will never be silenced.
“Having watched the toll it took on my mum to look after my dad, and knowing these families are going through the same, I felt somebody had to be their voice,” she said. “It is beyond brutal. I was never deterred but there are still times when I feel sorry for myself and wish the whole thing would go away. I’ll go upstairs, have a bloody good cry, get up off my backside and go again. There is never any good news but, by dying, my dad’s brain is now speaking for the living. I will always speak for him and I will always speak for those families of players who can’t speak for themselves.”
There have been breakthroughs since 2016: the PFA/FA commitment for research, a ban on young children’s heading in training, the proposed introduction of concussion substitutes, a submission to recognise dementia in football as an industrial disease and now firm proposals to limit heading in training.
And yet, as John Stiles, son of Nobby, so forcefully highlighted, the most important immediate change of all remains glaring.
“These players have had virtually no help,” he said. “With the money swirling around football, that to me is the biggest scandal of all. The previous lack of care and provision for players suffering with dementia has to change. The need is immediate and it is urgent.”