|Watch Head On: Rugby, Dementia and Me on BBC Two on Wednesday 5 October at 9pm GMT and daily. BBC iPlayer.|
World Cup winner Steve Thompson has collected all his medals, trophies and memorabilia. Since he started losing his memory, having the souvenirs around is too painful.
As he opens the box containing, among other things, his 2003 World Cup medal, MBE and pictures of him at Buckingham Palace, the former England international says he is embarrassed.
“It feels like a comeback,” says the 44-year-old. “I don’t think I’ve done that.”
What’s more, Thompson wishes he hadn’t. Then maybe now he wouldn’t have premature dementia, which he believes was caused by taking hundreds of blows to the head during his career.
“If I hadn’t done that, maybe I wouldn’t be such a burden to the family,” he says.
All this happens in a harrowing BBC Two film that follows Thompson.
In another scene, he tries to describe the “out of body” feeling of brain fog he experiences, when he suddenly stops mid-sentence. It is extremely illustrative.
We also see disturbing moments where she forgets her children’s names, or describes leaving her car running for hours.
It is clear that dementia has had an incredibly damaging effect on Thompson’s life; he has spoken before how he has had suicidal thoughts.
In 2020, he was one of a group of players who launched a legal case sue rugby’s governing bodies for negligence
The film documents it all, from Thompson and his family trying to come to terms with his diagnosis to his voice in the fight to make rugby safer.
The premiere of the documentary follows new research was published From a study looking at the link between sport and neurodegenerative diseases such as Parkinson’s, motor neurone disease (MND) and dementia.
The head of the study, consultant neuropathologist Willie Stewart, called on rugby authorities to eradicate contact training and reduce rather than expand the global calendar.
“They told you to get on with it”
Thompson was diagnosed in 2020 with early-onset dementia, which he says may be caused by a brain condition called chronic traumatic encephalopathy (CTE).
As it says in the film “this degenerative disease is caused by multiple blows to the head, known as subconcussions”.
During the film, Thompson visits Professor Steve Gentleman, professor of neuropathology at Imperial College London. Professor Gentleman explained that CTE is a condition that worsens over time and has no known cure.
Thompson is convinced the source is the multiple concussions he suffered as a player.
He was part of the generation that was playing when rugby turned professional in 1995 and tells BBC Sport that he believed the protocols around concussions and full-contact training were unsafe. It describes doing 100 live scrums in a single training session.
“I was told if you were out and you got back into it, just get on with it,” he says.
“If you had a headache, they would give me headache pills. It wasn’t known as an injury. It would be like, ‘At least you didn’t pull your hamstring, you can still run.’
Thompson says players were told their heads were their “biggest weapon” in some contact situations.
As Hooker, he was front and center in the 16-man scrum, and says the pressure on his head would have been “tremendous”.
“We did a scrummage session where the scrum machine was stuck to the floor so it didn’t move,” he says.
“Instead of the machine moving a little bit, the pressure is going through your whole body. Then they break to get into some rucks, and the pressure is going into your head.
“On the way out, you pass out. It would give me a few seconds to turn around and then do it again. Where you’re pushing so hard you’d burst blood vessels around your eyes.”
“You don’t feel like you deserve to be on this earth”
Thompson describes how he is now prone to mood swings, depression and forgetfulness.
During the film, on the other hand, when he does not remember the names of his children.
“We have young children,” says wife Steph. “It’s sad to think you might not know them when they’re teenagers.”
Thompson told BBC Sport that he now needs a lot more rest time, describing his brain as “an old Nokia phone”, “charging for 12 hours to get an hour of activity”.
He also says he has lost his job because of his condition.
“When I came out and told people, how many wanted to hire me? With them, I broke up,” he says.
“If you’ve been diagnosed with dementia and you’re in a workplace where someone else is injured, insurance companies won’t pay.
“You don’t understand until you’ve been there yourself. You don’t deserve to be on this earth, and you don’t deserve to drag everyone else down.”
Thompson also shares some of the techniques her therapist has taught her to deal with tougher times.
“I spray Stephen’s perfume on my arm and stuff,” she says. “Some pictures on my phone, when I start to get nervous, they pull me out.”
“There are not many care homes that will take young people”
It’s Thompson Among more than 185 players suing the governing body of rugby union for negligence, alleging that playing the sport had caused brain damage.
Throughout the film, he describes some of the negative responses the action provoked, including being trolled by rugby fans.
He is also disappointed with the response from rugby authorities – including the Rugby Football Union (RFU), which is the game’s governing body in England.
“There’s been no help from the RFU,” he says, “since I started the legal case, they’ve even stopped sending me the birthday card I get every year.”
Thompson says he needs compensation if he needs specialized care.
“I don’t want my children to have to give up their lives to take care of me,” she says.
“If I have to go into a home, you’re talking £10,000. And there aren’t many care homes that will take young people.
“I did my job. I trained as hard as I could. It’s other people’s jobs to take care of you.”
Concussion Protocol “A Small Start”
As well as seeking compensation, Thompson wants rugby to become safer, including less contact training, a longer waiting period for players returning from concussions and a brain scan process.
He asks: “In France, they do a heart scan and, if the players’ hearts are not good enough, they don’t play. What’s different about the brain?”
In July 2021, Deputies consultation concluded that sports were allowed to “mark their homework” on reducing brain injury risks, recommending a standard definition of concussion that all sports must use and a paid doctor at every major sporting event.
Last September, World Rugby recommended limiting full contact training to 15 minutes per week.
Thompson contrasts that with his playing career, when he says he would put in about 10 hours of contact practice a week.
But he believes that it is not enough to give recommendations.
“I’m glad they finally did something, I think it’s a bit of a joke,” he says in the film, adding: “Because it’s not just legal judgment and advice, it can easily be dismissed.”
In June this year, World Rugby extended its concussion suspension period from six to 12 days.
Again, Thompson believes the sport can go further.
“It’s a small start, but realistically it should be at least three weeks,” he says, adding that he still wouldn’t feel comfortable letting his children play full-contact rugby.
In a statement, World Rugby said: “We support innovation and technological advances to identify, manage and prevent head impacts in rugby.
“This proactive commitment has led to advances in the laws of the game, revised contact training load guidance, pioneering research into the use of mouthguards and, for ex-players, access to brain health consultation and brain health education.”
The RFU, meanwhile, said it had “played an instrumental role in implementing concussion and injury surveillance, concussion assessment and supporting law changes to ensure proactive management of player welfare”.
He added: “We and the Rugby Players’ Association have contacted all ex-players to share the work we do to support players, including launching an advanced brain health clinic for retired players last year.”
Northampton Saints, where Thompson spent most of his professional career, said: “Player welfare is always a priority. Concussion protocols have been put in place and implemented in a timely manner… to ensure proper monitoring and management of head injuries.”
If you, or someone you know, has experienced any of the issues raised in this article, help and information is available at BBC Action Line.