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Brain injury conference focuses on Time for Change report

The Brain Injury – Time for Change in Northamptonshire? conference focuses on concussion in sport and the justice system

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A regional brain injury forum is hosting a conference to discuss crucial issues raised in the Time for Change report. 

The Northamptonshire Acquired Brain Injury Forum has existed since 2008 and provides a hub for those with professional and personal experience of brain injury to share insight. 

The Brain Injury – Time for Change in Northamptonshire? conference, on May 19, will focus on two key areas of the Time for Change report, which was produced by the All Party Parliamentary Group on ABI and identified a number of areas where change is vital to benefit the lives of survivors and to protect future generations. 

Sporting concussion and the criminal justice system will both be discussed at the meeting, which will be held in the Kettering Conference Centre. 

Among the speakers will be Philip Hollobone MP, Member of Parliament for Kettering; Bobby Copping, a former Peterborough defender who will discuss his reasons for retiring at 19; and Holly Warner, project manager for the Headway UK Justice Project. The group will also hear the lived experiences of brain injury survivors. 

St Andrew’s Healthcare, a prominent name in brain injury care in the area, was one of the founding members of the Northamptonshire Acquired Brain Injury Forum. 

Dr Keith Jenkins, consultant clinical neuropsychologist at St Andrew’s, is chair of the Forum. He has a track record in delivering support to the brain injury community, and helped to create the St Andrew’s Relatives’ Support Group

“The role of the regional acquired brain injury forum is to bring together stakeholders in the field of brain injury within a defined geographical area, that includes; people with a brain injury, their relatives, statutory service providers and commissioners, lawyers and independent and voluntary sector service providers,” he said. 

“These forums provide the opportunity to share knowledge and expertise and contribute to local lobbying for improvements in support for people living with the effects of brain injury and those working with them.

“We have had tremendous support for our previous conferences and we look forward to the upcoming event.”

To book to attend, fill in this form, or for more details, contact Julie Mallard at julie.mallard@oakleafcare.com

Brain injury

‘See the hidden me after brain injury’

Action for Brain Injury Week highlights the struggle of survivors to adapt to the ‘invisible’ effects of brain injury

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Brain injury survivor Christine Charles

More than three quarters of brain injury survivors experience problems on a daily basis as a result of their hidden disabilities, new research has revealed. 

In Action for Brain Injury Week, the reality for survivors is laid bare through new research from Headway, which reveals 76 per cent experience problems every day as a direct consequence of their brain injury being ‘invisible’. 

Further findings reveal:

  • More than half (55 per cent) of brain injury survivors feel they have been unfairly treated as a direct consequence of their brain injury being hidden
  • Two thirds of friendships (67 per cent) and more than half (55 per cent) of relationships with a spouse/ partner have been negatively affected as a direct consequence of the brain injury being hidden
  • 86 per cent of people affected by brain injury (survivors and carers) felt that a lack of understanding from society is one of the main challenges to living life with a hidden disability. 

To help raise awareness of the hidden, and often misunderstood, consequences of brain injury, Headway has launched its See The Hidden Me campaign, which shows the battle that survivors and their carers, families and loved ones face to adapt to life. 

One survivor, Christine Charles, was diagnosed with a brain tumour in 2014 and underwent numerous surgeries and procedures in her eight-year cancer battle that initially left her unable to walk or talk.

“I was alive and I was walking and talking. And whilst it was the end of that chapter, it’s not the end of the story because there are so many side effects,” she says. 

It is now the hidden disabilities that Christine, and her wider caring network, struggle with – her memory, her agitation and the assumption that she’s now ‘well’ which she believes negates the long-term damage that’s been caused to her brain.

“Don’t expect me to be better,” she says. 

“It took me a long time to realise I will never be better. That’s fine. I’m ok with that. 

“But I think some people [struggle], ‘Well when will you be better? Oh, do you still need that [Headway]? But in the politest of ways, I am never going to be better.”

Christine features in this year’s See the Hidden Me campaign film alongside three other survivors John, Iona and Annette.

In the video they share the very real-life ways the hidden effects of their brain injuries, including memory loss, fatigue and difficulties concentrating, may be perceived, and explain their wish to be given a little more time, a little more understanding, and a little less judgement.

Their message: ‘Be kind. Be patient. Don’t misread the signs. See the Hidden Me’

Their sentiments are echoed by some of the 2,682 respondents to the See the Hidden Me study which reflected the emotional toll it can take on the survivor and their wider caring network.

‘People judge you as a normal person with no issues as that is how I look. They literally judge a book by its cover.” – Stephen

“When I tried to return to work folks would just see I looked fine and one even told me I’d “be fine, you look great” like that’s some kind of good thing when there’s a million symptoms kicking that no-one can see.” – Jodie

“Friends have given up on me because I can’t do all the fun stuff they do.” – Rebecca

Peter McCabe, Headway’s chief executive, said: “The results of this study demonstrate the difficult path survivors, and their carers, tread post-brain injury.

“To see the scale of the struggle endured by those with a hidden disability, not just a couple of years after injury, but decades later, makes depressing reading. The results of this survey are a call to action and should make us all more determined to do better.

“Brain injury can happen to anyone at any time, and when it does, Headway is here to help.

“We need to listen to the voices of these survivors and carers to be more patient, to listen, not to judge or undermine, and to educate ourselves about the long-term impact a brain injury can have on every bit of a person’s life.”

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Brain injury

Concussion Legacy Foundation tackles media coverage of concussion

CLF worked with BT Sport on a world-first project in training staff in reporting on concussion

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The Concussion Legacy Foundation (CLF) is continuing its commitment to changing the way head injury and concussion is viewed in sport by introducing a world-first media training initiative into the UK. 

The CLF has worked with BT Sport on its Concussion Reporting Workshop PRO, a first-of-its-kind program to educate its team in how to report on concussion. The broadcaster involved its cricket, boxing, football and rugby reporting and production teams in the initiative. 

The workshops, part of the CLF Media Project – the first and only concussion education program designed specifically for sports media members – were presented by CLF co-founders Dr Robert Cantu and Dr Chris Nowinski, and helped to address areas including the basics of concussion, the dos and don’ts of reporting on concussion, and the importance of concussion reporting to educate hard-to-reach coaches, parents, and athletes. 

The program has been used successfully by broadcasters and journalists across the United States, and has played a key role in redefining the way concussion is reported and regarded. 

Dr Nowinski has previously spoken to NR Times about the importance of challenging the traditional approach of many media outlets in ‘glorifying’ players returning to action after head injury.

Now, through its introduction into the UK, its commitment to changing attitudes, and as a result the future for players of all levels, is increasing further still. 

“The UK is many years behind the US in terms of understanding and dealing with concussion in sport,” said Dr Adam J. White, executive director of CLF UK. 

“It is great that an organisation as influential as BT Sport is taking this step to educate their team on the proper standards for concussion coverage and shows tremendous leadership on responsible reporting. 

“Every concussion on TV is an opportunity to educate, so when a commentator highlights the importance of concussion, it reinforces to every spectator, athlete, kid, and parent why we should be taking concussions seriously.”

“Improving our understanding and research into concussion in sport is a subject that I am hugely passionate about, and whilst it is extremely important that we understand the impact in training, in the game and on our bodies, we the sports media can also play our part in ensuring that we report and describe concussion and head impacts correctly, so that our viewers understand what they are seeing on the field and the correct response,” said Ben Kay, rugby analyst for BT Sport. 

“The presentation taught us how to cover the injury while still dealing in facts, something which I would encourage all sports broadcasters to invest their time in learning about.”

CLF launched the Media Project, which includes three parts: a Concussion Reporting Certification for sports media professionals, a Concussion Reporting Workshop for sports journalism students, and the Concussion Reporting Workshop PRO for sports media outlets, in 2018. 

Sports media veterans J.A. Adande, Bob Costas, Andrea Kremer, and Olivia Stomski helped CLF create the curriculum for the Media Project and serve as advisors for the program. 

More than 140 sports media professionals are now Concussion Reporting Certified, and the Concussion Reporting Workshop has been taught in 54 classes at 24 schools in the US and UK including St. Mary’s University Twickenham and Bournemouth University.

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Brain injury

Can concussion clues come from the gut?

Through blood, stool and saliva samples, a new study has examined the diagnostic potential of the gut’s microbiome

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Indicators of concussion could be found in the gut, giving new levels of insight into its impact and when it may be safe to return to action, new research has revealed. 

By taking blood, stool and saliva samples, a new study was able to examine the diagnostic potential of the gut’s microbiome.

The research, conducted with 33 Rice University footballer players over the course of one season, found a post-concussion drop-off of two bacterial species normally found in abundance in stool samples of healthy individuals.

It also found a correlation between traumatic brain injury linked proteins in the blood and one brain injury linked bacterial species in the stool.

After a concussion, the injuries cause inflammation, sending small proteins and molecules circulating through the blood that breach the intestinal barrier and cause changes in the gut, affecting metabolism.

The Houston Methodist research said these changes in the microbiota can deliver vital clues to help safeguard the person and their recovery. 

“Until your gut microbiome has returned to normal, you haven’t recovered,” said Dr Sonia Villapol, assistant professor of neurosurgery at the Center for Neuroregeneration in the Houston Methodist Research Institute. 

“This is why studying the gut is so useful. It doesn’t lie. And that is why there is so much interest in using it for diagnostic purposes.”

While brain movement within the skull may cause injury to nerve cells, such microscopic cellular injuries are not visible on imaging tests like X-rays, CT scans and MRIs, which are more capable of finding injuries on the scale of skull fractures, brain bleeding or swelling. 

As a result, the most commonly used test for diagnoses of concussions relies on self-reported symptoms like blurry vision, dizziness, nausea and headaches, which can be very vague, subjective and often underreported by athletes who want to continue playing. This can make them notoriously difficult to diagnose.

While there have been dozens of brain injury biomarkers identified, there has been limited success in developing commercial blood tests sensitive enough to detect tiny increases in biomarker concentrations, although a saliva test has been found to be effective.

However, due to the fact the central nervous system is intimately linked to the enteric nervous system, this could provide new insight, Dr Villapol said.

While only four of the players in the study were diagnosed with major concussions, the researchers say the results will need to be confirmed in a larger sample size. 

They also plan to conduct a similar study soon among women in sport, who similarly have frequent head trauma.

“Women and men don’t have the same immunities or gut microbiomes, and as a woman and a mother of daughters, I would hate to be that researcher who only looks at men’s issues while overlooking women,” Dr Villapol said.

“Women soccer players have very high rates of concussions, as well, and all the same problems when it comes to existing diagnostic methods.”

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