A new charity has been launched to address sport’s dementia crisis by challenging governing bodies in their “ultra-conseravtive” approach to research and providing support to families of suffering players.
Head for Change has been founded by families of former rugby and football players who are living with dementia and already lists the family of England World Cup winner Nobby Stiles, Tour de France winner Geraint Thomas and numerous international rugby players among its ambassadors. Its mantra is “be part of the solution” and, in that, it believes that there is now compelling evidence to demonstrate the link between sports like rugby and football with neurodegenerative disease, and that the debate must now urgently focus on making sports safer and helping those in often desperate need.
Among the founders is Dr Judith Gates, whose husband Bill is a former Middlesbrough and England youth player. With Dawn Astle, Gates formally applied earlier this year for dementia in football to be recognised as an industrial disease.
There is concern that sports governing bodies are seeking absolute causal evidence before making substantive change, even though the “balance of probabilities” threshold has surely long been exceeded, not least following research by the University of Glasgow which found the former footballers were 3.5 times more likely to die of dementia.
“The causation argument is nonsensical – because you can always bring in something else – and any academic could do that ad nauseam,” said Dr Gates.
“We don’t have absolute causation from tobacco and lung cancer. Some people get lung cancer who have never smoked. Some people smoke who never get lung cancer.
“We should be putting energy into diagnosis, prevention and treatment. We want to take a constructive approach, move forward and make things better for these players and their families. To work towards this goal is both a privilege and a shared responsibility. Sport should never take precedence over human beings.”
That outlook is shared by Dr Sally Tucker, who is a general surgeon in the National Health Service, and the daughter of another former football who is living with dementia.
“Our angle is to first ensure no harm,” said Dr Tucker. “If you are doing a drug trial, you would halt giving the drug until you get information that it is safe. The ethos with football is, ‘We will carry on what we’re doing and then see what the research tells us’. Unless we introduce change now, we are exposing players to this. There’s really compelling evidence that there is a link.”
Another ambassador is Mel Bramwell-Popham, whose husband Alix is a former Wales rugby international who was diagnosed with early onset dementia at the age of 41.
“The shared experience is vital,” said Bramwell-Popham. “There was no advice out there on how to tell the girls about the diagnosis. When I contacted Judith, I found that she had that experience of how to deal with it. She was a ray of hope in my life.
‘We decided from the start that this was not going to be a life sentence. Judith asked me what we wanted our legacy as a family to be. We want to help others. We want to help provide good care and support, to get diagnosis and help to people. This is not borne of anger or bitterness. We still love rugby and Alix doesn’t regret playing. We want to be part of the solution.”
Fundraising events are already planned to support families and independent research, starting with a 24-hour cycle ride in conjunction with Zwift. The group also hope to find a football club who would be willing to create a pilot to be ‘head safe’ in their training protocols and concussion management.