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Interviews

Tackling football’s inconvenient truth

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Football’s alleged culture of bungs and backhanders was thrown under the floodlights in September – culminating in the sacking
 of England manager Sam Allardyce.

In the same month as the Telegraph’s exposé of under the table deals, came another revelation to unsettle the custodians of the game.

The University of Stirling delivered the first piece of evidence to suggest heading footballs may be damaging to young people’s brains. With only 19 youth players tested, the study was relatively small.

Its findings, however, could have significant repercussions.
A machine fired balls to replicate corner 
kicks, with players heading them numerous times.

Brain function was tested before and after, with small but significant changes 
noted over the subsequent 24 hours among players who headed the ball at least 20 times.

“If I were a parent of a kid with an exam on a Wednesday, I would suggest they miss football training on the Tuesday,” warned co-author and neuropathologist Dr Willie Stewart.

The news was no surprise to Dawn Astle, whose father Jeff (pictured), the former West Brom and England striker, died of ‘industrial disease’ caused by heading footballs.

Having been diagnosed with early onset dementia, a coroner’s report revealed the true impact his career as a prolific scorer of headed goals had on his brain.

Dawn (pictured at a recent brain injury event) says: “If John Terry saw what my dad went through, not even remembering he had been a footballer, and choking to death, he would never head a football again. I honestly believe that.”

Jeff Astle was the first known case of chronic traumatic encephalopathy (CTE) – traditionally known as boxer’s brain – in a footballer. CTE is a progressive degenerative brain disease in individuals with a history of repetitive brain trauma, including symptomatic concussions and asymptomatic subconcussive hits to the head.

The trauma triggers progressive degeneration of the brain tissue, including the build-up of an abnormal protein called tau.These changes can begin months, years or decades after the last brain trauma.

They are associated with memory loss, confusion, impaired judgement, impulse control problems, aggression, depression and progressive dementia.

Following her father’s death in 2002 at age 59, Dawn launched the Jeff Astle Foundation to encourage research into the dangers of heading footballs.

Concussion in football campaigner Dawn Astle at the UKBIF eventHer battle has been marked by indifference, silence and mostly empty promises from footballing authorities.

“The coroner ruled that being a footballer killed my dad. In any other industry that would have had earthquake-like repercussions.

“Think of asbestos in factories, for example. But not football. They tried to sweep his death under the carpet. It was the last thing they wanted the coroner to say. The FA wasn’t interested and initially didn’t acknowledge what had happened to dad.”

The FA and PFA did promise a 10-year investigation in 2002 into the risks of heading a ball but this ultimately amounted to nothing.The 20 to 30 young people involved dropped out of the game and the investigation was discontinued.

Dawn discovered this years later from a journalist, much to her surprise.“We were stunned. It was a disgrace, especially from the PFA whose job is to represent players.”

Parallels are clear between Dawn’s campaign, and the struggles of Bennet Omalu, a forensic pathologist who discovered links between American football and CTE.

For Dawn’s cold shoulder from the FA and friends, read the opposition of legions of lawyers, doctors and brand protectors in the lucrative NFL club.

Although his fight for change goes on, the game did eventually donate US$12m to support CTE research.

For Dawn too, there are signs that the footballing world is finally listening.This winter she will attend an FA symposium at which the risks of CTE in football will be discussed with medical experts.

In the longer term, she hopes for robust, in-depth research to be undertaken.“Firstly we need a longitudinal study into the impact of heading footballs and it must be independent. If you look at the NFL, they initially did their own study and said there was nothing happening.

“It later transpired that they did know the risks. A lot of people say CTE in football is a generational thing and that it won’t happen nowadays because the balls are lighter.

“But that’s a red herring because they travel at a greater speed now. We don’t know whether a big heavy leather ball soaked in water would make a difference.

“Personally I don’t think it would because new balls still result in a blow to the head causing the brain to move in the skull.

“Another thing that could be done relatively cheaply is to look back at our former players and simply ask, have a disproportionate amount of them been diagnosed with dementia?” 

The evidence Dawn has accumulated from emails and letters from concerned families, suggests the answer would be yes – but unequivocal proof is needed.

“One lady’s dad played in the 50s and 60s at a local level. He never smoked or drank and was very strong and active. He collapsed when he was 52 and died days later of a brain bleed.

“He would always suffer headaches which o en kept him in bed for a few days. He was a centre half and often said heading the ball left him with headaches.“Another footballer’s daughter told me that her dad was one of three brothers who were all professional footballers. All three ended up with a brain disease. Also, my dad was the number nine for West Brom. The number nine before him died from Alzheimer’s and the same thing happened to the number nine before him.

“If you look at the 1966 World Cup winning team, Martin Peters, Nobby Stiles and Ray Wilson have all been diagnosed with Alzheimer’s.”If the scale of CTE problems in ex-footballers is to be properly investigated, more brain samples must be donated by families and loved ones of the deceased.

“It’s brutal to see a dad, brother or husband going through these problems. It can be a very distressing time but some are willing to agree to it. Not one person has mentioned anything about suing for compensation. They just want to find out the truth.“It’s the not knowing that drives you mad. Once that person has been buried or cremated it’s too late and they will never know.”

Dawn hopes her upcoming date at FA towers will be a catalyst for change. She would also like to see more measures to protect grassroots players from brain injuries.

“Grassroots football does not have a doctor on the sideline. Kids would carry on playing even if their leg was hanging off so if there is a head collision the choice of whether they come off or stay on, should not be with the parents. It should be in black and white in guidance from the football authorities.”

Investigating CTE in future

Dr Michael Grey, a motor neuroscience expert at Birmingham University, envisages future research into CTE and football as being cross-sectional, ideally following groups of players throughout their careers.

Grey is also hopeful that new research aimed at developing new tests for concussion will lead to greater player safety in future.

“Researchers around the world are looking at blood and urine tests and I think we are going to make some headway soon.

“One thing we’re working on is a breathalyser which could potentially detect concussion.

“Concussion causes brain chemicals known as metabolites, to change. If they get into the blood, as we believe they do, they should then transmit into the lungs and into the breath.

“So we should be able to detect them. We are working on this now but its use in the game could be a few years down the line.”

In terms of better protecting grassroots footballers from concussion, Grey says: “We need better tests that are inexpensive and can be rolled out to every football club across the world.

“We need a physiological test. Tests which rely on the compliance of the person involved don’t always work because players often just want to get back onto the pitch.“In some cases they don’t even realise there is a problem. There are no pain centres in the brain so it is difficult to detect.”

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Interviews

The couples therapist who rehabilitates love after brain injury

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Trained couple’s therapist and neuropsychologist Giles Yeates helps support couples and families and their connection and intimacy after a brain injury. He talks to NR Times about how couples can resume their sex lives after brain injury.

“It’s about reconnecting that sense of closeness and connection, I’m trying to rehabilitate love,” he says.

“After a brain injury, the focus is on the injury and regaining independence, rather than interdependence, but many families ask for this.

“When people talk about personality changes, saying the person is different and the connection feels damaged or wrong, couples therapy is way to help them find their way back to each other.”

But it isn’t the standard to offer couples therapy in the care pathway following a brain injury, Yeates says.

Many couple’s therapists who don’t work with neurological conditions don’t have the skills or understanding of the impact of a brain injury on a couple’s relationship and the heartbreak, he says. This is why Yeates focuses on a specific type of therapy that prioritises emotion.

“Emotionally focused couple’s therapy ticks the boxes straight away. It works on slowing people down. It’s about what happens in the sessions between couples.

“It’s neuro-friendly from the beginning, getting people out of their heads, to notice and communicate their emotional needs of each other that doesn’t engender further conflict, in a way that supports connection. It’s not a panacea, but it’s given as an option for couples to try,” he says.

Research, Yeates says, shows that the mental health of the brain injury survivor and their partner, and the strains on their relationship, all worsens from two to five years after the injury.

“Someone had a life-changing event and is in hospital, they lived, and they start to make improvements. Then, it’s only when they’re back home and the dust is settled do couples realise it doesn’t feel the same anymore.

“Or maybe the partner has to do a lot of physical care that has challenged the intimacy between them, that shows the emotional connection isn’t the same.”

It’s at this point, Yeates says, couples often decide they need help. But services may have fallen away by the time they reach this point.

“Often, services have fallen away by the time these needs show themselves. It depends on the availability of the community team or third sector organisation as to what support they can offer, which varies on the postcode lottery.”

Some people might reach out to a general couple’s therapist, Yeates says, who has no experience of working with people with neurological conditions, or a neuropsychologist who isn’t trained as a couple’s therapist.

“There are unique challenges here to consider, but accessing the right type of support is difficult.”

Yeates has found, from general feedback, that people would like to be asked more often by clinicals about their sex and intimate live.

“In the services I work in, I always ask people, and most people are relieved to be asked about their sexuality after a brain injury. For a survivor, sex after a stroke can be affected in so many different ways, in the same way people’s memories can be affected.

“People describe the experience of their sexual identity changing, of what turns them on being different, now, a sense of what feels possible to express themselves sexually is different now.

Perhaps they have cognitive difficulties that mean sex can’t be spontaneous anymore, for example, Yeates adds.

“From a couple’s point of view, it’s complicated, because a breakdown in sexuality can often be reflective of an emotional breakdown between them.

“Having therapy on how to do things differently in the bedroom might not be a priority for them, they might not feel emotionally safe or supported with their partner right now, and maybe this needs addressing first.”

When the emotional side of the relationship is good, Yeates says, couples should find ways to be supported to resume intimacy together.

“If someone is paralysed on one side, it’s about finding new ways to explore different positions, for example, or using physical aids, discussing ideas of how to express themselves and enjoy sexual contact in different ways.”

Yeates is happy to have noticed the uprising of a disabled sexuality movement outside of the brain injury area.

“The movement is saying that people with disabilities have the right to an exciting sex life, as much as anyone else.”

But this conversation is important for brain injury survivors, too, he says, as it’s important to think creatively and challenging norms to think outside the box of what sex is, Yeates says.

“This part of life after a brain injury gets overlooked and doesn’t get the attention it deserves. But for a survivor or a couple, it has loads of payoffs with mental health, wellbeing and connection.”

Yeates says there isn’t enough awareness among doctors, either. For example, he says, a person with a brain injury might experience side-effects of medication including loss of libido or erectile dysfunction, which can then lead to depression or low mood, but they often can get passed from a neurologist to a urologist, and no one speaks about things from the perspective of the person’s sexuality.

Yeates also works with brain injury survivors who aren’t in relationships, who want to develop the sexual component in their lives.

“I support people to use escorts a lot in my work, which is a contentious issue. There’s a lot of discomfort on the part of professionals, which is leaving service users high and dry to that dimension of their lives.”

But for those going to see escorts, the pandemic, particularly the lockdown, made it more difficult.

“In the lockdown, people can’t access sexual services in the same way. One client was able to resume going to a massage parlour and get intimate care, but the massage therapist was wearing a facemask and nothing else – if it wasn’t complicated enough already, this has added to it.”

Yeates has co-written a series of leaflets with Headway on relationships and sexuality, and a series of videos for Different Strokes on sex after a stroke, which can be viewed here.

 

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Interviews

The light and shade of brain injury recovery

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When comic artist Wallis Eates saw an ad from Headway East London looking for an artist in residence for the charity’s art studio, she knew she had to apply…

Headway’s East London studio provides a place for members, who all have acquired brain injuries, to create artwork.

Eates’ own line of work leading up to this included autobiographical comics, and digital storytelling with prisoners.

“I’d been looking for ways to help others share their stories or collaborate on story-sharing,” she tells NR Times.

Eates applied for the artist in residency, outlining in her application that she’d like to do comics of Headway members and incorporate their work into them. Eates’s application was successful, and she spent six weeks going into the studio three times a week.

“I was allowed to mill about, sit at the desk and ask what they were up to. They’d share their work with me, and I’d tell them about my project,” she says.

“They’d share experiences with me that I’d remember when I was looking at their work online, later, to see how I could combine it all.”

Eates says the experience made her feel inspired, and she came away with a strong feeling of the sense of community she saw in the studio.

“It was such a vibrant atmosphere,” she says. “I knew everyone was managing all kinds of stuff in their lives, stuff connected with their brain injury, and they were coming to the studio and creating incredible pieces of artwork.

“It reminded me of when I was in school when we did art and I wasn’t precious with it, I was doing it for the love of it. That’s what they were doing in the studio.”

The experience made Eates think about the individual and the collective, and she wanted to explore the dynamic between the two via shared experience.

Eates was taken up by Unbound, a publishing platform that supports people to crowdfund the funds to publish books. She’s currently halfway through her crowdfunding, before her finished book, Like an Orange, is published.

She says the name of the book came from several inspirations.

“One of the members I spoke with, who’d fallen down the stairs, said the brain surgeon he worked with said that the head is like an orange. That’s all he told me, but I assume he meant the elasticity, the texture.

“I later spoke to someone else who said the surgeon told her her brain was growing tumours like Saville grows oranges.”

 

Eates didn’t know anything about brain injuries before going into the project – and she’s learnt several lessons she hopes to pass on to readers of Like an Orange.

“I kind of knew brain injuries would affect everyone differently, and I went in with that agenda, ensuring the uniqueness of each member comes through.

“The biggest lesson I learnt was when we went on a daytrip to the Tate museum and I saw how invisible disabilities can be. Some of the members had nothing visible about them that suggested they were having a challenge walking down the road, but I knew they were,” she said.

“That really brought home to me how, when we go out onto the streets, we don’t know who we’ll be sharing that space with, we don’t know what’s going on with anyone who’s around us.”

“One chap kept going in front of the road or walking in front of people. At any time, we could be walking down the street and passing someone with a brain injury.”

Eates was also surprised to see such a positive atmosphere in Headway’s studio.

“Two members said they wouldn’t go back to life before their bran injuries,” she says, “because the lessons they’ve learnt have been more valuable since before then. It was extraordinary – I want to share these things in the book.”

Eates is looking forward to the members seeing their work in the final book.

“Most of them didn’t work autobiographically, they did artwork for the pleasure it, for escapism, focused concentration, and the joy of applying colour,” she says.

“It will be interesting for them to see how their artwork and their stories have inspired others.”

 

 

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Interviews

Scottish MP talks rehab, criminal justice and out-of-work assessments

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Interior of Scottish Parliament Building in Edinburgh

NR Times speaks with SNP MP, Lisa Cameron, about her background as a clinical psychologist and how long-term issues related to brain injuries are often overlooked.

Lisa Cameron’s attention is on countless important issues in her role as SNP MP for East Kilbride, Strathaven and Lesmahagow in Scotland, but she tells NR Times why she is particularly interested in policies relating to brain injuries. Before becoming an MP, she previously worked as a consultant clinical psychologist and is chair of the All-Party Parliamentary Group on Disability.

“When I was working as a psychologist, I was undertaking assessments of people with brain injury in relation to memory, executive function and language,” she tells NR Times.

“I’d routinely do assessments in practice, working with people on the front-line with brain injuries.”

Cameron also has second-hand experience, as her husband acquired a brain injury when he was serving in the Armed Forces. Thankfully, he received fast rehab, but the experience only highlighted to Cameron the importance of rehab and ongoing support for brain injury patients.

“I became aware from a personal point of view that these issues are often overlooked,” she says.

“Although someone might have treatment initially, often there are long-term consequences that go unnoticed, or support isn’t there over the long term and I feel it should be, particularly for veterans.”

Cameron often hears about the same pattern unfolding among her constituents, as well as problems accessing financial state support.

She has previously raised the issue of ‘inadequate’ personal independent payments (PIP) and employment and support allowance (ESA) assessments for people with brain injuries in the House of Commons.

“Someone with a physical disability has assessments with the Department for Work and Pensions to be assessed for financial support, where there’s often an underlying brain injury that may be historic on their medical records.

“But assessors don’t realise or understand that their functioning may not return to pre-morbid levels, and that there will be a residual impact on the person’s memory, potentially their language, their ability to plan and their executive functioning, and often these things aren’t picked up with benefits assessments.”

Unless someone has a really traumatic brain injury, Cameron says, they’re often not tested, despite the fact that much less severe brain injuries can often still have a massive impact on someone.

The coronavirus pandemic is exacerbating these issues, says Cameron, who is seeing diagnosis and assessments being delayed even more than usual in her constituency.

“That’s having an impact on constituents in terms of the support they have, and their access to appropriate welfare support,” she says.

Cameron has seen that, unless someone is admitted to hospital at the time of their brain injury, and undergoes extensive testing, there can be years of delay before the person is referred for assessments.

In Cameron’s constituency, there has been such a delay that a specialist service has been running outside of the NHS to alleviate pressure on the NHS for a number of years. She sees the positive and negative impacts this is having on the community.

“It’s preferable if services are conducted within the NHS, but the practicalities of things being the way they are currently mean that’s not happened, the NHS isn’t really able to manage this within the timeframe.

“For people who have been able to access it, it’s had positive benefits for them in terms of getting diagnoses, but the specialist service creates barriers where people can’t afford it, which creates inequality in the system.”

However, the service does get some referrals from the NHS to reduce patients’ waiting times.

“It’s good if people can access it from all backgrounds and it doesn’t undermine services the NHS is providing,” she says.

Away from her constituency and in Westminster, Cameron has found that, in her role as chair of the All-Party Parliamentary Group on Disability, there’s also a lack of understanding of brain injuries.

“People get confused between brain injuries and developmental disorders, spectrum disorders and mental health issues in parliament,” she says.

But Cameron has found this isn’t unique to parliament.

“When I worked in the prison service and going in to do assessments on people, there was a lot of underlying brain injuries that were unassessed. They were demonstrated in terms of impulsivity, lack of planning and poor executive functioning.

“This is a huge issue that needs to be addressed within criminal justice.”

Cameron says there should be basic training for prison officers around spotting brain injuries, and routine testing and assessments for brain injury when people are placed on remand.

When Cameron visited prisoners, she’d hear about prisoners who’d had three or four brain injuries, but no one linked it to difficulties they were having until she asked about their memory or executive functioning.

“Awareness training for prison officers and police officers would be helpful, and assessments for people on remand or in the system already, to ensure they get adequate support and any particular issues linked to their medical condition can be flagged up. This would definitely help recidivism rates.”

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