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Brain injury

‘I lost my sense of smell through brain injury – I’m grateful COVID has shone a light on its impact’

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Smell loss if one of the long-lasting symptoms of COVID-19

Having been in a near-fatal car accident, Sally Smith has recovered physically, but a brain injury resulted in the permanent loss of smell. Here, she discusses how the once-tricky subject has now become much more accessible through its association with COVID-19.

I used to love the smell of Christmas. I honestly think that was my favourite part. The mulled wine, the spicy fragrances, the turkey dinner cooking – that really made Christmas for me.

However, for the past five years, I’ve had to live without this, after losing my sense of smell as a result of my brain injury. As 80 per cent of the flavour of food comes from its smell, my sense of taste has also been seriously impacted.

It has been a pretty life-changing experience, one which I could never have appreciated the impact of. Christmas certainly isn’t the same, but neither is any other day.

The smells of summer – the cut grass, the flowers, the barbecues – all lost. The overpowering sensation of walking through the perfume departments of stores is something I can only remember. Even the smell of burning to alert me to the fact I’ve left the dinner in the oven too long is gone forever. And the taste of my favourite foods and wine is also tainted, with a flavour so faint often I wonder what is the point.

While people are sympathetic, they don’t understand. But how could they? I’m not sure I could have prior to my own experience.

Often, their sympathies extend to something like ‘Well at least you’ve still got your hearing/sight’ as if it’s some competition between the senses. Or ‘At least you’re still alive,’ which is quite dramatic, but nevertheless true.

I did come close to losing my life in a car accident five years ago. As a back seat passenger, I bore the brunt of a lorry crashing into the back of the vehicle I was in, and suffered a range of injuries, my brain injury being the one which still affects me now and always will.

I was undoubtedly lucky, apparently it was miraculous I survived, and I do feel so fortunate to have few other lasting affects apart from my loss of smell.

The topic was one that there were few opportunities to talk about, as devastating as it was personally for me, given the fact that so few people had experienced it for themselves.

Until a few months ago, that is, and the fact that loss of smell become a symptom of COVID-19. Suddenly, it stopped being a subject that was just plain weird, and one that everyone was talking about. People began to understand.

My next door neighbour had COVID-19 and lost her sense of smell for a short period. ‘It was only at that point I realised how horrendous it is,’ she said to me after her recovery. ‘Who knew I’d actually miss the smell of my daughter’s dirty nappy?’

And while that’s perhaps not something you’d ever think you’d miss, when you find yourself in the situation of not being able to smell anything at all, however divine or revolting, you do feel a great sense of loss. Of wishing to smell anything at all.

Thankfully, for most people with COVID-19, this is a temporary state, but I have heard there could be more than 100,000 of those recovering from this terrible virus whose loss of smell has extended beyond four weeks. I can only hope this is not a permanent state for them, although undoubtedly there is much more about COVID-19 and its lasting impact we have yet to discover.

For me, my situation is permanent, and living in a world with no fragrance is the reality. Yes, things could be much worse, and I realise that, but for me, it has been life-changing.

Brain injury

New guidance for teachers on ABI children returning to school

UKABIF and the N-ABLES programme have joined forces to show education staff how to help children when they return to school after a brain injury.

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Teachers and support staff already play an essential role in a child’s development, but their importance is increased tenfold when dealing with a child who has endured a brain injury.

Their return to school is one of the biggest steps of the rehabilitation process, so it is crucial this is done properly.

To make sure all education staff are properly trained in how to do this, the National Acquired Brain Injury in Learning and Education Syndicate (N-ABLES) have launched a new set of resources.

Created in partnership with The United Kingdom Acquired Brain Injury Forum (UKABIF), the information will be used to help children from ages four to 18.

From inclusion to understanding, the resources highlights a number of steps teachers can take to make sure these children are not left behind.

Dr Emily Bennett, consultant clinical psychologist at Nottingham Children’s Hospital, spoke on behalf of N-ABLES about why this information is so needed.

“A lot of the work that we’ve been doing is thinking about how we can upskill teachers,” she said. “They don’t have that background with ABI and what that leads to is a child coming back into school and the impact of that brain injury being missed.

“We also find that over time what happens is behaviours that might come as a result of the injury become misinterpreted or misattributed, so people are forgetting about the brain injury.

“I think the other reason that it matters is that there is this lack of pathways and there’s a lack of joined up thinking across health and education.

“What we found clinically is that it means the teachers feel that they’re left with a situation that they don’t believe they’ve got any expertise in.

“So the guidance really spells out who should be involved, what can they do to help and it’s aiming to get everybody working together and sharing this expertise

Through a set of posters, booklets and educational materials N-ABLED and UKABIF are looking to make sure the unique needs of children affected by ABI are met.

Their younger years are then most crucial for their development, which is why both groups feel this training for school staff is vital.

“Returning to school is absolutely crucial, there’s no doubt,” Dr Bennett said. “For many children schools are actually the biggest rehab provider that they have any contact with.

“We think that probably around 70 per cent of most children’s rehab will happen in school and it’s a place where they’re in this natural, experience rich environment.

“It’s somewhere that they relearn a lot of the skills that they may have lost, particularly with regards to things like cognition and social skills.

“But it’s also somewhere that they can learn to compensate for those acquired difficulties, they can learn new ways of trying to do things and with the right support around them that can be really successful.”

The resources are off the back of an independent inquiry from 2018 which outlined a number of recommendations for the government to undertake to better care around brain injury.

The Time to Change report also displayed some alarming statistics, such as traumatic brain injuries costing the NHS around £15 billion a year.

Furthermore it led to the formation of N-ABLES, which includes professionals from a range of backgrounds including head teachers and both educational and clinical psychologists.

The All-Party Parliamentary Group on Acquired Brain Injury (APPG on ABI) discussed the improvements, including allowing ABI to be classed as a special educational need.

However where UKABIF and N-ABLE’s are currently concerned is around making sure all education professionals have a minimum awareness and understanding of the condition.

The Department of Education has been heavily involved with this, but all organisations are aware that every child’s needs are different and they need to be empowered from this.

“The guidance was made off the back of that Time to Change report,” Dr Bennett said. “One of the recommendations in the education section was that we needed a clear pathway and support for returning to school after ABI.

“What we’re faced with is a situation where there’s a handful of pathways and processes around the country, but in most areas there’s a real lack of any coordinated or collaborative learning around this.

“We discussed clinical experience and thought about how we could produce a set of core principles to provide this effective support around a return to school.

“What we wanted to do was to make sure that the guidance was really focused on the child and young person, but then encouraged professionals to work together around a set of shared principles.”

More recently the UK has undergone some huge changes to its educational practices brought on by the pandemic, leading to a large-scale return to school effort after lockdown.

Dr Bennett says this has been a tough time for those affected by ABI.

“I think clinically our experience has been really mixed. From a rehab perspective, you lose a lot with home schooling, especially that experience rich environment.

“For those who have had an injury during COVID, it’s been really complicated as we’ve wanted to get them back into school and get them that natural rehab that they need.

“It has been more challenging and I think COVID hasn’t helped any of us, but it’s certainly not made life easy for young people with an acquired brain injury.”

Dr Bennett also said there has been a real positive reaction to this new approach from educational staff, with the resources set to be sent out to more schools in the coming weeks.

The guidelines were first announced at The Children’s Trust National Paediatric Brain Injury virtual conference, with that particular charity also recently publishing its own set of recommendations in this area.

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Brain injury

Groundbreaking neurorehab centre opens today

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A groundbreaking neurorehabilitation centre is today opening its doors, bringing a new dimension to brain injury rehabilitation in the UK. 

Calvert Reconnections, the UK’s first intensive acquired brain injury (ABI) rehabilitation centre which offers a unique approach to rehab for its residents, is now open after having to previously delay plans due to the COVID-19 pandemic. 

The centre, on the outskirts of Keswick in the Lake District, offers the first residential programme of its kind, combining traditional clinical therapies with physical activity in the outdoors.

“The opening of our new centre is the culmination of years of meticulous planning by the Lake District Calvert Trust. It is a landmark moment for the ABI rehab market and for us,” said Giles Mounsey-Heysham, chairman of the Lake District Calvert Trust (LDCT) trustees.

Working with leading clinicians and academics, our new rehabilitation centre will provide a groundbreaking, world-class rehabilitation programme tailored to support individuals in their recovery.”

Calvert Reconnections will actively seek to incorporate a wide range of outdoor activities into each participant’s rehabilitation programme, depending on their unique needs and interests.  

This may range from reflective activities such as fishing, bird watching or a nature walk, to higher adventure activities such as horse riding, canoeing, rock-climbing and abseiling – all closely assessed and graded to a person’s interests and functional abilities.

It is launching its new service with three confirmed participants and a strong pipeline of referrals, having seen significant interest from across the country since announcing its creation.

“After many challenges along the way, not least the COVID-19 pandemic, we are thrilled to open Calvert Reconnections. We are hugely excited about what the future holds,” says centre director, Sean Day. 

Rob White, activity lead at Calvert Reconnections, explains how the use of outdoor activities makes the new service unique.

“At Reconnections, participants are involved in every aspect of the activities they undertake,” he says.  

“They complete meaningful tasks, from concept to completion, in a real-world setting. Extensive research shows that outdoor activities can help individuals in their recovery from brain injury.”

Meanwhile, Calvert Reconnections’ long-established sister organisation Calvert Lakes is also reopening its doors today to people with a range of disabilities, from mild to profound, for much-needed holidays in the beautiful Lake District.

“Reopening Calvert Lakes is a welcome return to business as usual. We are so pleased to be able to welcome our visitors back,” says Sean. 

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Brain injury

Headway and Centurion come together for Hard Hat Awareness Week

Construction sites are often danger zones when it comes to head injury, an issue which one charity and safety company are hoping to tackle.

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Brain injury charity Headway has partnered with safety manufacturer Centurion in an effort to educate those in the construction industry around concussion and brain injuries.

Hard Hat Awareness Week runs from June 14th – 20th and is designed to make sure those in the building sector are following the best practices to avoid any potential head injuries.

As well as this both groups are using the event to help people spot the signs of concussion for both themselves and their coworkers through a series of educational media pieces.

Like Griggs, deputy chief executive at Headway, said campaigns like this are vital to showing people the serious nature of a head injury.

“We have been running our concussion awareness campaign for a while now,” he said. “But that has been primarily focused on the world of sport.

“With this what we are trying to do is to raise awareness and make people realise that concussion and head injuries are not just confined to sport.

“It can happen to anyone at any time, so we are gradually opening up the concussion awareness campaign to other facets.”

Ultimately the week is being used to remind workers of the importance of wearing a hard hat on site.

When operating heavy machinery and materials a blow to the head can have some life changing consequences, which is why Headway are pushing this message.

“It is absolutely crucial that we make people aware of the signs and symptoms,” Luke said. “People also need to be aware of the consequences, not only for themselves but for others around them.

“Construction sites are intrinsically risky places, despite the fact that the industry itself has improved so much in terms of its health and safety on site, head injuries still remain.

“We need to educate people on the importance of prevention, to make sure that they don’t see a hard hat as just something they’re forced to wear because you just never know when it might save your life.”

The charity has also pointed out the need for a societal shift in this industry, saying because it is a masculine sector people can often attempt to ignore a concussion.

Furthermore a lot of construction workers are either self-employed or contracted, meaning a lot of them can’t afford to miss a day’s work and won’t do so because of a headache.

“There’s still a degree of a kind of ‘macho’ culture in the construction industries,” Luke said. “Even though this is beginning to change it still has that element of not taking a minor head injury seriously.

“For many construction workers if they miss a day’s work they’re not necessarily going to be paid for it, they’re not going to be backed up by sick pay or any kind of protection in that respect. 

“That is causing a serious concern and it is half the challenge here.”

Headway and Centurion ran the first Hard Hat Awareness Week back in September 2020, which came off the back of a survey run by the charity around construction site safety.

This produced some concerning results, saying 86 per cent of workers had suffered a blow to the head but only 52 per cent reported it.

More worryingly only 6 per cent sought medical attention, while a further 79 per cent didn’t take any time off after their injury.

“The survey backed up what our fears were,” Luke said. “It’s vital to rest and to not overdo it because otherwise you’re going to exacerbate injury, taking even more time to recover.

“The difficulty and some of the attitudinal issues we found with that survey were the reasons why people aren’t aren’t doing it, some of which we can challenge others that are proving to be more difficult. 

“So there’s real work to be done now with the construction industry and we have tried to reach out to all the major construction players in this area, to actually help to educate people around concussion.”

Centurion are one of the biggest personal protection equipment companies in the UK and they are helping lead the way with this initiative.

One thing both organisations are also pushing throughout the week is the importance of properly mating hard hats and what role this can play in a person’s safety.

As important as it is to make sure people are wearing this safety equipment, if it is not properly looked after then the risk of injury increases.

Workers can still comply with regulations by wearing a hard hat, but if there is any defect in it then they are not sufficiently protected.

Through adverts on industry radio, educational posters and by working with the big companies in the industry Headway are hoping to minimise the short and long term effects of a head injury.

“It’s important to take this ‘if in doubt, sit it out’ approach, which is in everyone’s interest, including the individuals and their long term health, which could be affected if they don’t take it seriously.

“Every year Headway supports new people whose lives have been devastated by brain injury and the most tragic ones are always the ones which could have been prevented.”

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