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Brain injury

Carers at risk of being forgotten

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A study has found that 68% of people believe they should ‘reach out’ to carers more often – with 60% of respondents only asking carers how they are ‘now and again’, ‘rarely’ or ‘almost never’; leaving carers at risk of feeling forgotten.

Furthermore, 72% of respondents worried that carers struggled with ‘loneliness’ thanks to the full-on nature of care leaving them little time for socialising.

Throughout the pandemic, caregivers have been at the forefront of the fight, looking after the most vulnerable in society and putting their own lives on the line to do so. In light of this, a campaign called #ReachOutAndHelpOut has been launched to encourage support for carers as they continue to deliver essential care to those in need – amidst fears that carers’ wellbeing is often overlooked.

Spearheaded by Sentai, a British technology start-up focused on helping the elderly live more independently in their own homes, the campaign looks to highlight the vital role that carers play.

Respondents, mindful of the associated health impact of winter, believe the biggest fears to be faced by carers in coming months is another ‘national lockdown’ (60%), while 53% of respondents saw ‘excessive workload’ as a primary worry. 50% also believed ‘difficulty visiting family and friends due to their care commitments’ was a central concern, while ‘juggling different responsibilities’ was a key issue according to 46%.

Other concerns included ‘lack of time’ (32.9%) and carers ‘feeling they’re not doing enough’ (25%).

Professor Ray Jones, professor of health informatics at Plymouth University and director of eHealth Productivity and Innovation in Cornwall and the Isles of Scilly (EPIC), which focuses on the provision of internet based healthcare services (eHealth) voiced his support for the campaign, highlighting the difficulties carers face.

He said: “The impact of the coronavirus crisis has been profound on almost all aspects of society. For carers though, this impact has been magnified to a far higher degree. The physical and psychological toll of caring during a pandemic is huge. We must be mindful of the burden placed on carers and do what we can to help. The service they provide is essential, and we’re all indebted to their hard work. The very least we can do then is simply ask them how they’re doing and offer whatever assistance we’re able to give.”

These sentiments were echoed by Philip Marshman, founder of Sentai and orchestrator of #ReachOutAndHelpOut, who said: “The role of a carer is often overlooked. It’s all too easy to ask how the recipient of care is without extending that concern beyond to take into account the person looking after them. Carers are people, not robots, and now, more than ever we must do what we can to consider and support their wellbeing and mental health.”

Sentai has launched a Kickstarter campaign to raise funds for the next stage of its smart device development, the success of which will see its pioneering technology brought to mass market – allowing those in need to benefit from its advanced offering.

Philip said: “The experience of looking after my own father led me to create Sentai, and it’s been developed to help both the care recipient and the caregiver. Through revolutionary voice technology it initiates intelligent conversations, helping to alleviate boredom and loneliness, while also providing helpful reminders. It’s safety properties also allow the caregiver to monitor the care recipient remotely and unobtrusively, providing reassurance that the care recipient is OK and acting as normal, thereby helping to ease stress and worry for the caregiver.”

He added: “We have everything in place to deliver a successful solution – we want to get Sentai into people’s homes as quickly as possible – whether that’s someone’s own home, or a care home. Raising funds in this way means we can stay true to our mission which is helping people live more independently, for longer.”

Further details of the Kickstarter campaign can be found via https://www.kickstarter.com/projects/sentai/sentai.

To find out more about the #ReachOutAndHelpOut campaign and the different ways to get involved, including the chance to win a well-deserved break away, please visit sentai.ai/ReachOut.

Others in the care industry who have expressed support for the #ReachOutAndHelpOut campaign, include Dr Stephen Ladyman, founder of Oak Retirement and former Minister of Health responsible for Social Care, and Shaleeza Hasham, founder of the Adopt a Grandparent scheme and head of hospitality at care home and home care provider, CHD Living.

Brain injury

Brain injury in football – heading for trouble?

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Ipek Tugcu - specialist brain injury lawyer and Southampton fan

Football fan and specialist brain injury lawyer Ipek Tugcu has become a leading analyst of the concussion in sport debate. Here, she discusses the crucial issue of player safety with NR Times.

Whether you’re a football fan or not, you’re likely to have seen that the sport has recently been in the headlines for all the wrong reasons.

The focus has been on how football has dealt with the increased risk of neurodegenerative disease suffered by professional players. The quick answer? Not well.

I initially became involved in this campaign as I was a football fan and also work as a brain injury lawyer, representing those harmed by medical negligence or an accident.

Attempting to change any sport is a sensitive matter. Now more than ever, fans rely on sports as a means of escape from their busy lives.

People invest a lot into their favourite team, and the idea that tradition could change often causes immediate uproar. So it’s important to look at the facts, and to understand what the issue is and how the sport could evolve, to allow it to safely continue.

So what is the issue?

While it may just be hitting the news now, none of this is new. For decades, campaigners have raised concerns about the increasing number of professional players diagnosed with neurodegenerative disease, namely dementia.

Of course, neurodegenerative disease can affect anyone, but a worrying correlation has been apparent in the sport.

One of those players affected was West Brom legend Jeff Astle, who died in 2002, aged 59. His death was due to chronic traumatic encephalopathy (CTE) – a progressive, degenerative brain disease usually suffered by athletes with a history of head injury, such as multiple concussions.

Sadly, his situation is not an anomaly, and a growing number of former footballers have been diagnosed with dementia, including Gordon McQueen, Sir Bobby Charlton and Nobby Stiles.

So what exactly are the risks?

In October 2019, a research study commission by the FA and PFA (the “FIELD” study – Football’s InfluencE on Lifelong health and Dementia risk) revealed that former professional footballers were 3.5 times more likely to suffer from neurodegenerative disease than the general public.

Within this, former footballers were 5 times more likely to develop dementia or Alzheimer’s and twice as likely to have Parkinson’s.

These statistics are alarming, and working in the field of brain injury – we know the widespread devastation that such conditions cause, not just to the individuals diagnosed but to their friends and family, their local community and the NHS, who are often left to pick up the pieces and care for them.

The reality is that brain injuries, by their nature, cause significant administrative and financial pressures on individuals and authorities caring for the patient. The sporting world needs to take on the burden of finding solutions to problems they have created, before the younger generation is put off sport for good.

So what is it about football that puts players at increased risk? Whilst the FIELD research study didn’t pinpoint the exact aspect, research tells us that:

  • It’s nothing to do with the argument that ‘the balls back in the day were heavier than the current, modern ones’. This is an incorrect misconception which has been debunked. The old leather balls and the new synthetic ones both weigh around 15oz. Whilst the older balls were heavier when wet, this means they would also have been slower so would have had less of an impact when hitting a player’s head. As such, today’s players face the same risks as footballers from decades ago.
  • Subconcussive hits may be the main culprit. People often focus on concussion in sport, but it’s easy to forget that even those blows to the head that don’t formally cause concussion (i.e. are subconcussive) will impact the brain. In respect of football, players suffer most of their subconcussive blows during training, when practising heading. This type of training can usually mean hours every week of repeated hits to the head. Multiply this by the likely duration of their career, and a bleak picture emerges of the extent of trauma suffered to the head.

Despite the above, the current rules in football have not changed.

Whilst injuries, including head injuries, are part and parcel of any sport, it doesn’t negate the fact that players should be protected from known risks. It’s reckless and not to anyone’s advantage to ignore the research.

There’s also the legal side to this. Professional footballers are employees merely doing their job and, as with anyone in this situation, their employer has a duty of care to take reasonable steps to protect them from foreseeable harm.

Ignoring known risks will only cause a headache for governing bodies in the future, making them vulnerable to legal claims against them for ignoring the known dangers and failing to establish and follow proper protocols. You only have to look to the NFL to see that this is not a far-fetched prediction.

So what’s the solution? Do we ban all forms of heading in football? What about the fact that footballers choose to play the sport, and with that comes an element of risk – do we just have to eliminate all potential injuries from the sport?

The truth is, the authenticity of football does not have to be compromised in order to protect a player’s health. There have been a number of proposed enforcements, however as a fan and campaigner, temporary football concussions has been one option which I hope could really make a difference.

As of 6th February 2021, the Premier League became the first in the world to introduce a trial for permanent concussion substitutes. So, what exactly does it mean – and how does it compare to the campaign for temporary concussion substitutes?

The current trial means that where a head injury has occurred, or is suspected, the injured player’s club can make a concussion substitution. This means:

  • They can substitute that player, even if they have used up all their normal substitutions. The player will be removed from the pitch and sent for head injury assessment in a private room. The substitution is permanent – once the player is off the pitch, they cannot return to the match, even if the assessment finds that they are absolutely fine.
  • To ensure a level playing-field, the opposing team is afforded an additional substitution at the same time too
  • A team is allowed two concussion substitutes, per match

The intended aim is to put the player’s health at the forefront and ensure that this is the priority, over team tactics.

At the moment, there’s a fear that players aren’t being substituted for proper head injury assessments because the club is focussed on their match strategy. The trial hopes to encourage clubs to be reassured that they will not be at a disadvantage by having their player assessed for a potential head injury.

Temporary substitutions are similar, but crucially allow a footballer to return to play if they are deemed safe enough to do so. In this case, the player would be temporarily replaced by a teammate, but then would be able to resume play if they had the all clear.

The concern is that permanent substitutions don’t encourage players, or clubs, to proactively engage with the trial – because they know that starting this process will automatically rule that player out for the rest of the match, regardless of the outcome of their medical check.

So you’re left with a situation where the manager needs to make a quick decision on the spot as to whether they’re willing to lose that player for the remainder of the match.

Even for the most caring manager, this puts them in a position of choosing team tactics over player safety and we’re back to square one.

A perfect example of this happened in a recent FA Cup match, where West Ham’s Issa Diop suffered a nasty head collision. He played on, whilst clearly struggling, until finally being substituted at half time.

Of course, we don’t know why a decision was not made at the time of the injury to engage with the trial – but it makes you wonder whether not wanting to lose their player factored into the club’s decision and they decided to chance it to see if he could be safe to play on.

Temporary substitutions offer a win-win situation for clubs and footballers.

Teams can be reassured they won’t be at a tactical disadvantage, as the substitution could just be temporary, and players can be reassured that their health is made a priority and they can undergo a thorough head injury assessment privately.

Doctors will be well-versed in the mantra ‘if in doubt, sit them out’ – so the risk of putting a potentially injured player back on the pitch is minimal.

This continues to be an ever-evolving situation affecting footballers here and abroad. It will be interesting to see what permanent steps, if any, are taken by the Premier League and other leagues across the world.

Of course, the issue of brain injury mismanagement in sport isn’t just limited to football. It’s my hope that a balance can be achieved between protecting players, reassuring the new generation and still allowing fans to experience the thrill of the sport as they have always known it.

* Ipek Tugcu is a Senior Associate in the Adult Brain Injury team at Bolt Burdon Kemp and an avid Southampton fan. She is a well-known campaigner for brain injury in sport, particularly football, to be taken more seriously.

Twitter: @Ipek_Tugcu

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Brain injury

Case Study: Lynda’s Story

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Lynda’s story provides an uplifting insight into how neurorehabilitation following a brain injury can have positive, long-lasting effects on an individual’s physical and mental wellbeing. This is even when there is a significant time period between the brain injury occurring and starting rehabilitation.

Lynda was an independent woman who had a job, family and friends. However, she had a history of battling with substance misuse and was at risk to the influence of others. The exposure to these negative influences resulted in her suffering a hypoxic brain injury following an overdose in 2010, from which she remained in a coma for three months.

Lynda’s story highlights her dedication and the commitment of the specialist care team at Richardson Care in her rehabilitation journey.

Unique and Supportive Environment

Lynda was admitted to The Richardson Mews in December 2014, more than four years after sustaining her brain injury. The home is run by Richardson Care, a specialist residential care provider in Northampton. What makes it unique is the family atmosphere that is created and the uncompromising commitment to putting the service user at the heart of every decision that is made about their care. Richardson Care is an independent family business with a 30-year track record. Their expertise and experience in creating a homely and supportive environment encourages people with acquired brain injury to engage in their therapies. Combined with a person-centred and innovative approach to care delivered by a multi-disciplinary team, enables Lynda and others, to transform their lives.

Goal-Orientated Rehabilitation

When Lynda arrived at Richardson Care she was wheelchair-bound and she had been told that it would be very unlikely for her to walk again. Her ability to mobilise was minimal: she was only able to mobilise for extremely short distances and required a walking aid. She expressed her wishes to be as independent as possible and to walk again. However, she had little insight into her own physical limitations. Lynda also needed frequent prompting and encouragement with all aspects of daily living (such as personal care).

“The day Lynda arrived she was withdrawn, unable to walk and had limited speech. Lynda has shown great determination throughout her rehabilitation. Today, she has a voice. It is a pleasure to be part of Lynda’s journey.” – Jane Payne, Operational & Clinical Officer

Lynda’s personal care and treatment plan

In addition to her physical disabilities, Lynda presented with behaviours that could be described as challenging. The multi-disciplinary team at Richardson Care worked with her to devise a care and treatment plan that would address her physical, behavioural and emotional needs.

The following gives us an insight into some of the different elements of her care plan, that when consistently applied, lead to lasting benefits. They are helping Lynda towards her goal of independence.

  • Psychology input – Cognitive Stimulation Therapy, Relaxation Group and 1:1 sessions that focus on improving and maintaining her emotional well-being. She is encouraged to use her coping mechanisms when facing challenges, and staff are aware of her early warning signs. These sessions also provide Lynda with the opportunity to discuss any issues or anxieties and receive reassurance and positive feedback on her behaviour.
  • Physiotherapy input – weekly physiotherapy sessions to work on balance, strength and stamina and to help maintain flexibility. They focus on improving Lynda’s physical well-being and strength, working collaboratively to reach her goal of independence.
  • Positive Behaviour Support (PBS) Approach – care plans, risk assessments and intervention guidance; working with Lynda to recognise and reinforce positive behaviours and increase her independence.
  • Consistent support from care workers enables Lynda to develop and maintain a good therapeutic rapport with staff, helping her to manage her surroundings and behaviour.
  • Social and environmental influences offered at Richardson Care allow Lynda to utilise her independence and build confidence. These include: meaningful activities, consistent structure and routine, trips to the community with staff support, opportunities to socialise and build positive relationships with other residents and staff.

Progress and Current Presentation:

Throughout her time at Richardson Care, Lynda’s strive for independence has been a prominent motivating factor for her. This is reflected in the significant progress she has made at every stage of her rehabilitation.

In 2019 (after being at Richardson Care for around four years) Lynda reached the stage where her strength, balance and confidence had been built to a level where she could walk independently with no aids. Throughout her physiotherapy sessions, staff adopted a person-centred approach to maintain engagement and compliance and to work with and around her cognitive difficulties. This approach has proved extremely effective with Lynda and has increased both her physical and mental well-being.

Timed Up & Go Test

“Lynda is the prime example of how a person living with a brain injury can still make considerable physical improvements given the right environment and therapy approach. Lynda was not in the early stages of her rehab and her injury was more than 12 months prior to coming to The Richardson Mews.” – Guy Stewart, Physiotherapist

The graph below provides a visual representation of Lynda’s substantial progress whilst at Richardson Care. The ‘Timed Up and Go Test’ is used to monitor Lynda’s improvements in walking 12 metres unaided, where the average time is taken from three attempts.

On admission in 2014, it took around 60 seconds for Lynda to complete the test. There was then a significant improvement in the following year and her average time decreased to 28 seconds. The years following have continued to see small improvements.

The most recent test, completed in January 2021, reported an average time of 14.90 seconds. Despite Lynda’s average time only being 0.35 seconds quicker than the previous year, it highlights how she is maintaining her mobility status and not showing decline. This is a vast achievement considering the restrictions in place due to the pandemic that has ensued between these two time points. Even with the limited access to physiotherapy and a reduced opportunity to go outside for walks, Lynda has remained consistent and motivated in her recovery with the support of her care team.

Emotional Well-being

In addition to her physical progress, Lynda has been supported by care staff and the psychology team to ensure the quality of her emotional well-being and improve her resilience. Lynda still requires support to build a healthy resilience to stress by using effective management techniques, particularly regarding her experience of health anxiety, and this is less frequent.

Through psychology sessions, such as relaxation and 1:1 coping skills sessions, Lynda has developed a good inventory of skills to use when experiencing frustration or anxiety. She appears to have developed more insight into her emotions, knowing when to seek out staff support. This has aided in the development of self-esteem, confidence and resilience.

“Lynda has become a part of The Richardson Mews family and I have witnessed her growth since her admission. When Lynda first came, she was told she would not be able to walk and would be wheelchair bound. Now she can walk without any support. Lynda is very bubbly and always welcomes new residents with open arms. The day she leaves will be a sad day for The Richardson Mews, but it will be good to see her progress and she deserves to live the life she wants.” – Gill Ayris, Admissions & Referrals Manager

Daily Living Skills

Lynda continues to make significant improvements in her daily living skills; these include cooking her own meals with little support, and under normal circumstance, attending the local swimming pool, visiting the local shops to complete her shopping, going to cafes for coffee, going to bingo and socialising with staff and residents. She often encourages other residents during group activities.

Lynda secured a part-time paid job at Richardson Mews, where she completes office tasks. This is in line with her ASDAN (Awards Scheme Development Accreditation Network) courses, which she thoroughly enjoys and shows dedication to.
Challenging and Risk Behaviours

Lynda is a caring and empathic lady. She is usually calm and pleasant but at times presents with behaviours that can be described as challenging. These behaviours highlight her vulnerability and her impulsivity. However, the positive interventions and consistent staff support offered at The Richardson Mews is contributing to a reduction in such behaviours.

Lynda could be viewed as a model resident at The Richardson Mews where she continues to progress in her rehabilitation journey. The continued staff support she receives, coupled with her own determination means it is reasonable to say that her goal of moving on to supported living in the future is well within her reach.

Lynda’s Comments:

“I love it here and I have grown as a person, but I am ready to move on all because of the decent services I have received here.”

“I love having physio, the food is lovely, and the staff are very friendly and I have achieved a lot with Sallie (ASDAN coordinator) and gotten loads of certificates.”

To find out more about the unique and specialist residential services provided by Richardson Care, call 01604 791266 or visit www.richardsoncares.co.uk

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Brain injury

ABI and eating disorder

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Research on the link between eating disorders and ABIs is still evolving

The impact of brain injury on a person’s life can be vast, with the effects many. But what if an eating disorder comes into the equation? Solicitor Ewan Bain explores the issue.

The effects of an acquired brain injury (“ABI”) are truly multi-faceted, ranging from dysexecutive syndrome, neuro-behavioural issues, to more obvious physical disabilities.

It is well known that mental health issues and conditions can arise from acquired brain injuries; the well-known ones being depression and anxiety. However, what about Eating Disorders arising from ABI; is that possible and are they linked?

Whilst there have been massive strides in the neurological sciences over the past half century or so, there is still much more we do not understand fully.

Eating Disorders (which encompass conditions such as anorexia, bulimia, amongst others) are yet to be truly understood; it is still difficult amongst clinicians treating in this area what is often the best method to treat people with such disorders.

The clinical studies and clinical treatment of Eating Disorders is still evolving; so what does one do when presented with an individual who has an ABI and has thereafter developed an Eating Disorder?

The short answer is: it’s complicated.

Treating Eating Disorders per se is phenomenally tricky and if it is compounded with someone who has an ABI, which can bring with it other co-morbidities associated with that, it makes for a very convoluted clinical mix and a huge challenge for those clinicians trying to treat the individual affected.

What is an Eating Disorder?

An Eating Disorder is when an individual adopts an unhealthy attitude towards food. It does not necessarily mean eating too little, it can also involve eating too much, or being obsessive with one’s weight and body shape.

The goal of any intervention towards an Eating Disorder is to essentially:

  • Restore physical health
  • Develop normal patterns of eating habits/attitudes;
  • Reduce the impact of illness and day to day functioning.

The goal is fairly obvious but achieving it is not. For a start there a number of differing disorders:

  • Anorexia Nervosa – this condition involves where one tries to keep their weight as low as possible. They do this through not eating enough, excessive exercise or a combination of both.
  • Bulimia – with this condition, people lose control and binge eat before then being deliberately sick or using laxatives.
  • Binge Eating Disorder – losing control of your eating by consuming large portions of food at once which leads to feelings of guilt
  • Other specified feeding or eating disorder (OSEED) – this is where a person does not have what classically fall under the above conditions but nonetheless have an issue.

The above conditions have differing approaches ranging from pharmacological to the psychological, or a combined approach of the two. The environment and setting of how such treatment is delivered can differ too and depends largely on the person’s wishes, the availability of specialist services and the clinical presentation of the person affected.

The impact of Eating Disorders should not be underestimated. As well as the personal impact on the individual and their families, it has wider social and economic connotations as well. PwC recently conducted research and prepared a report on the commission of the Eating Disorder charity, “BEAT”. That report estimated that the cost to UK society of Eating Disorders was circa £15 billion per annum, which is simply staggering.

Eating Disorders tend to affect the younger population and young females are the more prevalent group. One study found that there was mean incidence for anorexia, as an example, of 4 to every 100,000 in people aged 10-39 years.

What is more disturbing, using Anorexia again as a graphic illustration, is that Anorexia is often reported to have the highest mortality rate amongst all of the psychiatric disorders.

ABI with an Eating Disorder

It is uncommon to find individuals who have sustained an ABI, with no previous history or risk factor for Eating Disorders, to then develop one post-accident.

However, whilst it is uncommon, suffice to say, it does not mean it does not occur.

The clinical community are aware of the link between ABI and Eating Disorders but it is perhaps not as clearly agreed or understood amongst them is how best to tackle it.

There have been some reports and studies but it is understood that these are not vast by any stretch of the imagination. There is little data that exists which concentrates on food behaviour patterns with this cohort of people with eating disorders.

In one particular case study, the authors found that the cases “all had a frontal subcortical syndrome, expressed by neuropsychologic dysfunction, neuroimaging (frontal and basal ganglia lesions) and also as personality changes.”

They went on to discuss how patients with cognitive deficits might not be affected by behavioural strategies to combat their eating disorder.

They ultimately concluded the following: “the eating disorders in patients with traumatic brain injury may be present from early phases and persist years after the lesion….Eating disorders in the TBI patient should be approached and treated in a different way to a typical anorexia and bulimia taking into account the cognitive impairment caused by traumatic brain injury. Prospective studies are required to determine the importance of the different factors influencing eating behaviour of these patients. Results enable us to understand the course and progression of these disorders over time and establish appropriate medication for their control.”

The future

What is evident from the above is that field of Eating Disorders faces its own battles in understanding and tackling the competing factors, be it clinically, socially or even politically (with respect to funding).

The added layer of an ABI into the mix, convolutes the picture further, what with insight and cognitive deficits.

This will be to some therapists and clinicians in the ABI field relatively new ground to them; therefore, it is difficult to say (even if one was from a clinical background) how to approach this.

What can be said though is that input is almost certainly required between specialist clinicians practising in treating patients/clients with atypical ABI symptoms and with those from the Eating Disorder field. It is therefore of the utmost importance that, for instance, a case manager presented with such a client, considers specialist input from psychiatrists and clinicians from the Eating Disorder field.

They will need to work in conjunction with those treating the typical symptoms arising from the ABI; the priority of treatment will undoubtedly be the Eating Disorder and without tackling that firstly, it may not lead to progress in tackling other areas such as the client’s cognitive deficits and associated behavioural issues.

Case Managers, therapists and even legal practitioners practising in the ABI field, need to act quickly if there is an inkling that their client could have an Eating Disorder.

Regular contact/communication with your client and their family should allow you to be alive to such situations.

If such a situation does occur, then the case manager/legal team should consider arranging urgent discussions with those concerned in the care of the client; individuals with Eating Disorders may not accept that they have a problem and added with possible insight issues arising from a ABI, then this needs a careful approach so as not to disengage the client.

  • Ewan Bain, specialist brain injury solicitor at Switalskis Solicitors, was assisted by Dr Matthew Cahill, Consultant Psychiatrist, in preparing this piece.

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