This Sunday, national care and rehabilitation charity British Home is launching its first National Neuro-Disabilities Day to raise awareness of living with such conditions.
For over 150 years the charity has been helping residents at its London-based home and it is now looking to use that experience to get more people talking about this.
Keith Crowhurst is the organisation’s director of care and he spoke about how the idea for the day came about.
“It’s something we’ve been talking about for a while now,” he said. “While reading a lot about neuro disability when we were looking to develop our own services we were quite surprised by the lack of information that was out there.
“There have been many things where people talk about raising awareness and we felt it’s very much part of our strategy going forward and is something as a charity we should be doing.
“We had a discussion and felt that actually having a day where we focus on the wide range of aspects of neuro disability would be a really good idea.
“It’s about just raising the profile of neuro-disability in general, but also for us as an organisation as well.”
British Home is looking to run the event on the sixth of June every year, with this date representing the one in six people who are affected by these disabilities.
The group is hoping this will make more people aware of how widespread this is and highlight just how many people it impacts.
This awareness is the driving factor behind this initiative and British Home are hoping that the event will start more conversations around the issue.
“To us it’s such a wide area that affects so many people,” Keith said. “People think about major things like stroke, for example, but for all the other varieties of neuro-disability or conditions that can lead to one, there’s not as much awareness.
“So it’s very much to start that process and to become part of the conversation around that.
“Not only talking about the negative side of these disabilities, allowing people to see the effects of it, but also talking about some of the research that’s going into all the technology that’s being used to support people.
“With the right levels of support people can have a very fulfilled life with many different ranges of neuro-disability.”
On the day itself British Home has a number of activities planned for its residents and those coming to visit.
Information around neuro-disabilities will be set out for those visiting, with games and special meals all taking place to make the day enjoyable for its residents.
In the lead up to this the charity has set up the #BHIceCubeChallenge where contestants are asked to video themselves throwing an ice cube into a cup in the most creative ways possible.
After they have donated to British Home they then need to nominate six friends, again to represent those affected by these conditions.
All of this has been designed to give residents something to smile about after what has been a difficult year for those in care homes.
Getting their families involved after long periods without them is key for the charity as they look to give them something positive to focus on.
“We’re trying to make it a day that’s enjoyable,” Kieth said. “But it’s also got a very clear message about what it is we’re trying to promote.
“We want to give our residents have the opportunity to talk about that as well what their experiences are like, including both the positives and negatives that they’ve gone through that may help other people going forward.”
With so much experience in the care sector British Home offers people a wide pathway to care for those who live with these disabilities.
It puts the individual at the heart of the process, offering them bespoke rehabilitation as well as residential care.
Things like palliative and respite care are also on offer for those who need it.
The charity is looking to run the National Neuro-Disabilities Day annually from now on and have recently outlined a new five year structure to strengthen its future plans.
Getting more involved in the community is part of this, so is expanding the range of services it offers as well as looking at using new technologies to help its residents.
Fundraising will be key to this with British Home looking to commit extra funds for refurbishment and modernisation work on its centre.
With increased awareness this is more than possible and it is only being boosted by initiatives like the Neuro-Disabilities Day.
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.
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.
50,000 call on government to fix broken dementia research promises
Alzheimer’s Research UK has pleaded with the UK government to invest in dementia studies, as it promised to do back in 2019.
More than 50,000 people have signed a petition to ask the UK government to double its funding for dementia research and keep the promises it made two years ago.
Boris Johnson initially said there would be £160 million invested into the sector in the 2019 Conservative manifesto, but there has been a lack of movement in this area since.
This has spurred the Alzheimer’s Research UK charity to launch the petition, calling on Number Ten to help fund possible treatments for dementia.
The pandemic has been particularly hard for those with the disease, with a quarter of COVID-related deaths coming from this group.
The charity feels the sector has been neglected in recent years with David Thomas, head of policy at Alzheimer’s Research UK, saying the funding is the best chance of curing the condition.
“Dementia research is an area of huge need,” he said. “There are a huge number of people affected by it and with an aging population that will only increase.
“There are currently no treatments in the UK for the disease so we think research is vitally important to tackling that.
“We’ve seen an historic underfunding for dementia research. When the Conservatives announced their manifesto and made a commitment to double dementia research funding we thought that would be a great step forward.”
An Alzheimer’s Research UK supporter has also made a personal plea with the government to change this.
Olive Munro lives with vascular dementia and this week she submitted a letter to the Prime Minister asking him to make sure future generations do not suffer the same fate as her.
“She supports our campaign,” David said. “Her letter set out the impact that her diagnosis has had on her life and ultimately she wants to ensure that her children and grandchildren don’t have to go through a similar terrible situation.”
“I think it’s a really powerful message Mrs Munro has sent.”
The pandemic has been a big player in regards to this underfunding, but its impact on those with dementia has only heightened these concerns.
As well as this a lack of finances have meant that a number of researchers across all sectors have been lost, only making the situation worse.
This is why the charity has chosen to call on the government now. With the crisis in its latter stages Alzheimer’s Research UK wants to see a similar success that has come about from the vaccination programme.
“We understand that COVID has played its part,” David said. “It has had a significant impact on government priorities and we’re very sensitive to the fact that since the promises were made we have been in this crisis.
“But with the pandemic moving into a different stage and the vaccine programme being such a big success, now feels like the right time to meet that commitment.
“COVID has had a devastating impact on people living with dementia, so we think the pandemic has made this more urgent not less urgent.”
There is support across parliament for this investment, with over 100 MPs across all major parties supporting the move.
The petition has also been signed by some famous names, including Dame Judi Dench, Julie Walters, Stephen Fry and Dame Harriet Walter.
If it were to progress and the government were to double dementia funding then it would have a profound impact on the sector.
“Ultimately what we hope that funding will lead to is new treatments in this space that will ultimately stop the progression of the disease, which we haven’t got at the moment.
“We also hope it will lead to improvements in detection and diagnosis of the disease as that is really important.
“One particular thing we think the additional funding could do is ensure that we don’t lose a generation of researchers and that we keep and expand that talent, because that’s the people who will be responsible for delivering those life changing treatments.”
Away from the UK there has been some progress in this area.
In America the first dementia treatment in over 20 years was approved recently, which is a landmark move.
David is hoping this can send a clear message to the UK government that progress for this really is possible.
Many in the research industry are hoping this will lead to the approval of further treatments, as well as more investment from big pharmaceutical companies.
There is certainly the appetite for these changes, as Alzheimer’s Research UK has shown, but it is now in the government’s hands to act upon this.
“We have over 50,000 people who have signed the petition and we are well aware that behind each one is a story around the impact dementia has had on them,” he said.
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.
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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