Alcohol-related brain injury (ARBI) is becoming more widely recognised, but specific rehab services for the condition are surprisingly rare.
With few dedicated units for patients with ARBI, many patients in need of specialist care instead find themselves in a hospital or even an elderly care home.
ARBI is characterised by prolonged cognitive impairment and changes in the brain due to chronic alcohol consumption.
The average age of diagnosis in men is 55, and only 45 for women – following at least five years of excessive alcohol consumption, of around 50 units per week in men and 35 for women.
ARBI is not a degenerative condition, with up to 75 per cent of patients recovering to some degree with the correct support; and the first three months following diagnosis are recognised as key in a person’s recovery. Access to appropriate provision, therefore, is even more crucial at this time.
In February, UK-wide charity Leonard Cheshire opened a residential unit in Northern Ireland to help some of the many patients in need in the country. It is the first facility of its kind on the island of Ireland.
The 14-bed unit, near Belfast, opened inconveniently – after years of planning – just as the COVID-19 crisis was emerging.
Its work goes on, however, with the centre taking patients from across the country, though initially from the capital and surrounding areas.
The residential centre aims to support residents over a two to three-year period, although that can be shorter for some patients. It helps them to live independently, by building the life skills and confidence to do so.
Naomi Brown, clinical lead at the centre, joined Leonard Cheshire late last year to oversee the opening of the facility, following an extensive career in brain injury work and in being part of multidisciplinary teams.
She says: “The background here in Northern Ireland is that the acquired brain injury (ABI) service is really well structured and established but for ARBI, often the person wouldn’t meet the criteria for addiction services, but their needs would not be such that they needed to be admitted to hospital, or even fulfil the criteria for ABI services, so they would fall through the cracks.
“The provision they receive would often come from the care sector, but to end up in a care home at what could be a very young age is not appropriate either.
“There is a real lack of options. Their care managers recognise they aren’t in the appropriate setting for them, but through a lack of alternatives, it is very difficult.
“A lot of symptoms are very similar to those under the influence of alcohol, difficulty with balance and memory for example, which can make ARBI difficult to diagnose.
“Often it can be something like liver failure that gets them into hospital, but then it becomes obvious there are cognitive issues there too.
“Our centre only has 14 beds, which we don’t pretend is going to answer the scale of the problem, but the decision to restrict it to that number is that we don’t want quantity over quality. To try and accommodate huge numbers would risk the patient-centred approach that we are really proud of, so we wanted to keep it on a small scale.
“But there are 14 places here at any one time for people to get access to the specialist rehabilitation they need, so we are really pleased to be able to offer this.”
With the centre’s goal being the independent living of its patients, a resident-led rehab plan is created for each individual, based around their individual goals and aspirations.
It is delivered by Leonard Cheshire’s team of rehab assistants, supported by clinicians, occupational therapists, physiotherapists, speech and language therapists and neuropsychologists who come in to hold sessions with the residents, and overseen by Naomi.
“From the minute someone is admitted to us, we are already planning for their discharge, even though that may be a long time and a lot of work away.
“From the very start, it’s about the individual, it’s absolutely not a generic approach, even though the ultimate outcome for everyone may be the same. Most people who move in do want to live independently, so if that’s their goal and we will do all we can to help them achieve that, with a plan individualised for them.
“Some people will come to us and we realise they won’t be here very long as they do very well very quickly, but for others, they are going to be with us for two or three years.
“Some people arrive and love it here and say they don’t want to leave, which is a great reflection on the work we do and the centre we’ve created, but the ambition is that the point will come where they realise they don’t need us anymore.
“Through the work we do and our interventions, we can make very good progress. We’ve had some people here already who have been in quite an acute state but the progress they make brings joy into my heart.”
One such patient is David* who, despite only being with the centre for a matter of weeks, has made significant progress in his recovery.
Prior to moving to Leonard Cheshire, he lived in a nursing home for two years.
Before his arrival, Naomi remembers he had low mood, minimal spontaneous conversation and spent long periods of time in his bed sleeping.
He had no clear weekly routine and lacked any scheduled therapeutic or recreational activities.
Naomi says: “David initially required a significant amount of support to initiate activities, engage with others or even leave his room. He has slowly adjusted to the active therapeutic programme in the unit and his mood has improved significantly.
“His mobility and exercise tolerance has greatly increased, he participates in group activities, is now more spontaneous in conversation and has developed facial expressions. David has been able to self-identify rehabilitation goals and discovered a new love for playing the drums and guitar.
“He is in the very early stages of his rehabilitation but having spent three months in the ARBI unit, the change is his quality of life is already dramatic.
“He engages in an individual, weekly timetable which includes activities of daily living, physical, cognitive and social activities, and is reportedly very happy in his current placement. Once the COVID-19 restrictions are lifted, we very much hope to begin reintegrating David to the local community and making future plans for his discharge.”
David’s experience is one which the unit is keen to replicate, by engaging patients from the earliest stages of their arrival at Leonard Cheshire in building a new and healthier daily routine.
“We are always keen to introduce routine, as that is so important in the longer-term. Where some people have maybe traditionally watched TV all night then get up into the afternoon, we try to create a new routine with lots of support services available in the morning. A healthy routine is what we want them to have when they go back home,” says Naomi.
“We encourage people to do things for themselves – to get up, make yourself breakfast, maybe do some gardening or help with the cleaning, all things which promote the ability to do things independently.
“If they put the washer on, they’ll need to go back to it when it’s finished. We have rehab assistants on-hand to support them, but we do actively encourage independence.”
Everyone has an individual timetable for the week based on their own interests, combined with their clinical requirements, which centres on promoting reintegration into the community.
“It’s very individualised, so if someone wants to do an online course or learn how to cook for themselves, or learn a musical instrument, we’ll focus on that. We have a fantastic team here who will turn their hand to anything for the benefit of our residents,” says Naomi.
“As well as activities in the centre, we do a lot in the community, or rather we did before COVID-19, but that will resume when it’s safe to do so. We did sports activities, yoga classes, bowling, it’s not just your classic physio. We want people to be engaged and comfortable with the world outside.
“We will always ensure residents have support once they leave us, and are setting that up long before they go.
“If there was someone who was with us who wasn’t from Belfast, we would use resources we knew were transferable to where they lived, so they didn’t leave us and not know how to access support.
“We build up these links with community services in the relevant discharge areas, so ideally the person will already be confident at being independent and will have the added assurance of knowing they continue to be supported.”
The Leonard Cheshire centre’s launch came amid changes to Northern Ireland’s legislative backdrop with the implementation of the Mental Capacity Act (NI) 2016. This has new deprivation of liberty regulations, a significant new introduction for the country and its approach to capacity and consent.
Naomi says: “When planning for the opening of a new centre, a global pandemic wasn’t on the radar, and for it also to coincide with the new mental capacity legislation meant it was a really busy time for us in the early stages, the COVID-19 aspect of which we could not have foreseen.
“The pandemic did present challenges for our residents, many have a certain level of confusion so it’s difficult for them to always remember that they can’t be close to someone else, they have to regularly wash their hands. There is a lot of prompting which leads to a certain amount of frustration. While they are watching these things on TV about how COVID is affecting the world, it’s hard to relate that to everyday life.”
New referrals continue to arrive during the pandemic, from both hospital discharge and moving from a care home environment, although happily the Leonard Cheshire unit has remained COVID-19 free.
“We were keen to admit new residents and take referrals from hospitals and care homes, subject to extra measures being in place to protect ourselves and our residents.
“We wanted to continue to support hospitals and free up beds, but also to offer the appropriate care to people whose specific needs through their ARBI diagnosis meant they would be better in our centre than a hospital environment or care home.
“This has certainly been a challenging period in which to start our ARBI unit, but we have come through it well together so far and we look forward to continuing to develop ourselves as we come out of the pandemic and go into the future.”
*Name changed for anonymity.
Update:concussion in sport
A run through the latest developments in concussion in sport research and protocols.
A study published in the May 27 in the medical journal of the American Academy of Neurology, looked at a biomarker called neurofilament light chain, a nerve protein that can be detected in the blood when nerve cells are injured or die.
Levels of the protein in the blood were measured and it was found that those with three or more concussions had an average blood levels of neurofilament light 33 per cent higher than those who had never had a concussion.
“The main finding in the study is that people with multiple concussions have more of these proteins in their blood, even years after the last injury,” said study author Kimbra L. Kenney, M.D of the National Intrepid Center of Excellence.
“Additionally, these proteins may help predict who will experience more severe symptoms such as PTSD and depression. That’s exciting because we may be able to intervene earlier to help lessen the overall effects of concussions over time.”
Following on from our article on the game changing tests into concussion in children it has been found that concussions sustained by high school athletes continues to increase.
Injury data collected from 100 high schools for sports including football, volleyball and wrestling found that, between the academic years 2015 and 2017, the average amount of concussions annually increased 1.012-fold compared to the previous four academic years.
Approximately 300,000 teens suffer concussions or mild traumatic brain injuries each year while playing high school sports.
Wellington Hsu, M.D, professor of orthopedics at Northwestern University’s Feinberg School of Medicine said: “It’s understandable to think that with increased awareness among practitioners who diagnose concussions, the incidence would naturally rise; however because we’ve studied and reported on concussions for a number of years now, I feel that enough time has passed and I would have expected to see the numbers start to level out.
“What we found was that the overall average proportion of concussions reported annually in all sports increased significantly, as did the overall rate of concussions.”
The data also revealed that in gender-matched sports, girls seemingly sustain concussions at a higher rate than boys.
The effects of concussion in young people continues to be a key concern, with links between concussion and football, specifically when heading the ball leading to some big changes when it comes to training guidelines.
Coaches have been advised to update their rules connected to heading the ball in training, with no heading at all in the foundation phase for primary school children and a “graduated approach” to introduce heading training at under-12 to under-16 level. This guidance is expected to be issued across the continent later this year.
These new guidelines were recommended following a FIELD study, joint-funded by the English FA and the Professional Footballers’ Association, published in October last year, finding that professional footballers were three-and-a-half times more likely to die of a neurodegenerative disease than members of the general population of the same age.
The study did not identify a cause for this increased risk, but repeated heading of a ball and other head injuries have been identified as possible factors.
Dr Carol Routledge, director of research at Alzheimer’s Research UK, said: “Limiting unnecessary heading in children’s football is a practical step that minimises possible risks, ensuring that football remains as safe as possible in all forms.
“As such, measures to reduce exposure to unnecessary head impacts and risk of head injury in sport are a logical step. I would, however, like to see these proposals introduced as mandatory, rather than voluntary as present, and a similar approach to reduce heading burden adopted in the wider game of football, not just in youth football.”
A similar stance, that also includes restrictions during matches, has been in place in the US since 2015 after a number of coaches and parents took legal action against the US Soccer Federation.
There is clearly a need to educate coaches and athletes about the concussion recovery process while equipping physicians with quick diagnostic tools.
A partnership between Neurotechnology and brain health analytics player SyncThink and concussion education technology specialist TeachAids aims to offer the latest concussion education combined with mobile, objective measurement technology.
EYE-SYNC, which allows a clinician to use analysis to decipher between brain systems to determine whether a patient may be performing poorly or impaired, will create a brain health education and evaluation system based on the implementation of CrashCourse, an interactive educational module that teaches athletes, parents and coaches about concussions.
This implementation will be available to all SyncThink partners which include top athletic organisations and clinical partners providing medical care and education for over 10,000 high school and college athletes.
This implementation could make tracking those who receive concussion education easier while complying with sport governing bodies educational requirements.
SyncThink founder and medical advisor to TeachAids, Jamshid Ghajar said: “Using the SyncThink platform to feature the CrashCourse educational technology for athletes and coaches is brilliant.
“Now clinicians can use the Eye-Sync tests and metrics alongside CrashCourse’s latest evidence-based information on concussion.”
Neurobehavioural rehab in aggression management after TBI
Changes in personality following TBIs are often more problematic than neurocognitive, functional deficits or even physical disabilities. Dr Grzegorz Grzegorzak, consultant neuropsychiatrist at St Peter’s Hospital, South Wales, explains why taking a neurobehavioural approach to treating TBI can be highly effective.
Personality changes are sometimes referred to as neurobehavioural disability (ND), especially when associated with social difficulties.
The concept of ND involves impairments of numerous aspects of functioning including the abilities to self- monitor and self-regulate, to control frustration, anger and aggression, to tolerate delay in gratification, and to self-motivate.
These impairments can lead to a sense of being overwhelmed when facing situations requiring control and management of internal impulses or coping with social situations or tasks.
Impulsivity, disinhibition and aggression all have significant potential to interfere with rehabilitation efforts, jeopardize recovery and become a major obstacle to successful functioning in social roles.
Research estimates the prevalence of aggression in survivors of TBI as being as high as 33.7 per cent.
Addressing aggression as soon as it arises is critical to the individual’s recovery.
Sometimes aggressive behaviour is so intense and frequent that its management takes priority over all other aspects of care and rehabilitation.
Neurobehavioural rehabilitation (NR) was introduced in the late 1970‘s as an attempt to improve functional abilities of TBI patients.
NR stems from recognising that people who survive TBI can still learn new skills to self-regulate and to modify their behaviour.
The basis of NR is embedded in learning theory and thus the success of NR is reliant on the patient’s ability to make use of new information and experiences.
Therefore, NR is only suitable for the post-acute phase of recovery from TBI, and in fact is intended as a medium to long term rehabilitation programme.
NR interventions are composed of comprehensive and multidisciplinary efforts to create a user-friendly, supportive and encouraging social environment which facilitates therapeutic interactions and activities.
Specific goals and detailed routines are constructed for each patient individually, based on structured collection of data informed by behavioural analysis.
The process of designing and implementing the interventions puts emphasis on personal autonomy.
Clinical formulation is preferred over medical diagnosis. The attitude of the MDT should always be positive, embracing a strong belief in the patient’s ability to achieve their goals, improve and recover.
Carefully managed feedback and positive reinforcement are an essential part of NR.
Consistent interactions with every member of the team are of utmost importance, given that neurobehavioural intervention should not be limited to scheduled activities but in fact incorporated in every interaction.
Over the last forty years the model has been implemented by many neurorehabilitation services worldwide.
Several case studies describing recovery pathways through NR paint a very positive picture, and our own experience at St Peter’s of adopting a neurobehavioural approach has demonstrated it can produce real and measurable outcomes for both our patients andtheir families.
Case Study: Mehmet
On admission to St Peter’s Hospital, Mehmet presented with extreme challenging behaviours including serious assaults on staff, destruction of environment, verbal abuse and shouting.
Mehmet has frontal lobe dysfunction as a result of a head injury he sustained. For the previous 18 months he had been in a general hospital.
At St Peter’s a bespoke positive behaviour support plan and activity plan were developed with Mehmet’s input and reflecting his cultural needs which, under the supervision of his MDT, promoted positive changes to his social interactions, routines and activities.
Over nine months Mehmet’s challenging behaviours reduced significantly and he now enjoys a wide range of activities including regular community visits and has strengthened his relationship with his family.
Dr Grzegorz Grzegorzak is one of the consultant neuropsychiatrists at St Peter’s Hospital a specialist 39-bed Neuropsychiatric facility in Newport, South Wales run by the Ludlow Street Healthcare Group. www.saintpetershospital.co.uk
Action among the daffodils
William Wordsworth urged to the world to “come forth into light, let nature be your teacher”.
He was obsessed with the natural world’s power to help, heal and nourish.
Surely then, the lake poet would have approved of the owners of his old Cumbrian bolt hole.
For they are also channelling the power of nature, in the name of rehabilitation.
On the outskirts of Keswick, down the sort of road that only the Lake District can produce – dramatic skies, looming peaks and ancient trees stretching their arms over the narrowest strip of tarmac – stands Old Windebrowe.
The finishing touches are just being put on restoring the 500-year-old tithe barn and dairy cottage when NR Times arrives on a wintry morning.
Fortunately the heating is working and, over coffee in the barn’s vast communal space, Jill Beswick updates on the progress.
She recently moved here from Shetland to take up her role as clinical lead for Calvert Reconnections, an acquired brain injury (ABI) rehab centre harnessing the great outdoors to drive better patient outcomes.
Her experiences of running a community rehab service on the remote Scottish island could stand her in good stead for rolling out her new employer’s big plans.
“I’m used to remoteness, weather and small communities that really seem to look after each other. We moved up to Shetland for a two-year adventure and ended up staying for 16 years but when I saw this job it struck me as a brilliant opportunity and I’ve been on a rollercoaster ever since.”
We’re sitting in an area where brain injuries survivors, support workers and therapists will gather in the morning, anticipating a day of outdoorsy adventure; and socialise in the evening, windswept and glowing from the best the Keswickian elements can throw at them.
“When I show the locals round they all remember the ceilidhs they used to come to here,” says Jill. But the real historical highlight of the building is its Romantic connections.
Wordsworth’s close pal growing up was one Raisley Calvert, and their friendship continued into adulthood.
By age 21, however, Raisley had developed tuberculosis and was dying. He saw great potential in his young writer friend and wanted to help him fulfil it.
He made sure that his family’s Old Windebrowe cottage was given rent-free to Wordsworth and his sister Dorothy and they lived there for several years.
He also left him £900 in his will to afford him the freedom to write, prompting William to pen the sonnet, To the Memory of Raisley Calvert declaring: Calvert! It must not be unheard by them / Who may respect my name that I to thee / Owed many years of early liberty.
It’s fitting that the room where Wordsworth lived, and which was a launchpad for his career, will be used for life-changing interventions once more; with Calvert Reconnections developing it into a classroom for residents and staff.
The organisation believes it has created the UK’s – and possibly the world’s – first intensive ABI rehab centre focused on outdoor activities.
Residents will typically stay for three to six months, with accommodation for up to ten adults with ABI at any one time.
The centre offers a “24-hour interdisciplinary approach”, with clinical and rehabilitation support combined with various outdoor activities to challenge individuals and deliver evidence-based outcomes.
Before its £1.4m redevelopment, the property had been largely unused, save for some activities like archery. Thanks to a fundraising drive by the Calvert Trust, the charity which provides outdoor adventure holidays for disabled people, it has undergone a dramatic transformation.
The Grade II-listed building now has accessible bedrooms, a self-contained flat to help support people in their independent living, alongside a living area with kitchen and laundry facilities to encourage residents to do as much for themselves as possible.
The centre also has links to Calvert Trust’s portfolio of other facilities, including outdoor activities centres and accommodation also in the Lake District.
The facility adds much-needed residential brain injury care capacity, helping to alleviate a problem continually highlighted by neuro-rehab professionals; the chronic lack of available resources, which can jeopardise patient outcomes.
Recent research carried out by Exchange Chambers barristers and Calvert Reconnections highlighted this further.
It shows that ninety-seven per cent of senior brain injury lawyers believe there are a lack of residential- based brain injury rehabilitation units in the UK.
Also, 71 per cent say the NHS is unable to provide effective support. (Clearly this research took place before the Covid-19 crisis, and time will tell what impact the pandemic has on NHS investment in the future.)
Calvert Reconnections is helping to plug this gap in residential ABI care, while also offering a novel approach – drawing on the benefits of outdoor activity.
“The fact that we really focus in on the outdoor activities and adventure as part of our therapeutic model makes us completely unique. There is nowhere else doing what we do,” says Jill.
“The outdoor activity approach is our therapeutic medium to reach the goals that people want to achieve around things like planning, time management, social interaction and managing impulsive behaviours.”
Outdoor activities can also enhance wellbeing and confidence, Jill explains.
“The goal might not be to climb a mountain, for example, but it’s the fact that what you are doing is a challenge that matters, and this alters how you feel about yourself and your own mental wellbeing.
“If I can do this, which I never thought I could do, then what else can I do? It starts opening up other horizons.”
The outdoor element is underpinned by an interdisciplinary programme which Jill and her team build around the needs of individual residents.
“With a neuropsychologist, neurophysiotherapist and junior occupational therapist employed on-site, alongside rehab coaches with a background in enabling support or activity instruction, the team has been put together to respond to bespoke needs.”
And daily routines do not follow the norm in neuro-rehab.
“We don’t have a clinical model here,” she says. “We don’t have say, physio at 10 o’clock and speech therapy at 11. We don’t have a set programme of that kind at all.
“We work in conjunction with our participants, get to know their aims and work together to achieve them. It depends on their interests as to how we match that and also decide what therapies are appropriate.
“Certainly, we don’t have a programme that everybody has to fit into. We speak to people, find out their interests, the difficulties they have, their aspirations and what they want their future to look like.
“We can then look at how we can build that into their own therapy programme.”
An array of activities is offered to residents, depending on their individual needs and preferences. Calvert Reconnections has an adjacent horse riding centre and is also only four miles from the Calvert Lakes Activity Centre.
“Taking the access we have to the stables as an example, it’s not just about horse riding, there is equine care, stable management, repairing fences and outdoor management. We are focusing very much on the activity challenge alongside the vocational one.
“We have two people carriers which will enable us to get out and about, and we do want to work with the community and with local businesses and groups.
“The response we have had so far has been fantastic and we hope there are many opportunities for us to work together.
“We’re not a secure unit, we’ve developed this as being a part of the community, and we want people to feel able to go out into the community. Doing this helps to open up further opportunities for life experience.”
After busy and active days, the Calvert Reconnections centre itself offers a homely environment, with ten individuals bedrooms on the ground floor and a first-floor living area including a snooker table to increase the opportunity for social interaction.
The centre is designed to be both relaxing and challenging.
“If you go to most rehab units, they are a bit like hotels in that every bathroom and bedroom looks the same. But that’s not what we’ve got here. Every room is different, which gives it character, but also provides a better opportunity from a rehab perspective because it can offer different challenges.
“Depending on what type of bathroom facilities they have at home, for example, we can try to replicate them to better prepare them for the future.
“Also, with a lot of newly-built rehab units which are very accessible, but very clinical, you find that when somebody is going home, they may not have had any experience of steps, slopes or other walking challenges that occur in real life areas.
“Whereas here, while some of it is a bit quirky because it’s a very old building, we have a real life setting and we want it to challenge our residents.
“If you make things too ideal, you’re setting people up for failure when they go out into the community. Can they go to the local shop if you’ve not been practicing on stairs or different surfaces?”
The approach is also designed to support residents’ mental wellbeing, helping them to better manage the cognitive challenges of daily life.
“Often, when people are going through their acute phase of rehab and to get them out of hospital, the focus is on whether you can walk, wash and dress yourself. But actually they may not be able to manage a daily routine.
“They look good because they’re walking fine, but planning their day and managing their activities within the day is a real struggle. So we feel that to be able to work on that cognitive rehabilitation, mental wellbeing is a massive aspect that we’ll also be addressing.”
As well as focusing on the needs of her residents, Jill also hopes to help to build up the hard evidence for Calvert Reconnections’ distinct approach.
“Previously this type of service has not existed, which is why we need these evidence-based outcomes.
“But everyone we have spoken to and consulted with, whether that’s potential clients, clinicians, case managers, physicians and personal injury lawyers, is really excited about the model and feels that this is absolutely the way forward.”
And once such evidence is collected demonstrating the value of Calvert Reconnections’ approach, Jill aims to share it as widely as possible.
“We are very excited about the work we are doing and the impact this will have on the people who come to us from across the country, and hopefully on many others too,” she says.
Since our visit, Calvert Reconnections has opened for referrals. Find details here: www.calvertreconnections.org.uk.
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