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.
Has UEFA done enough to protect player safety at Euro 2020?
The collapse of Denmark’s Christian Eriksen due to a cardiac arrest during his team’s opening game at Euro 2020 shocked football fans worldwide and raised many questions about player safety. Here, sports disputes lawyer Barrington Atkins examines football authorities’ approach to the safety of players and asks whether UEFA has done enough to protect those competing at Euro 2020
Concussion safety was meant to be at the forefront of the Euro 2020 finals.
All 24 teams committed to following the recommendations of the Union of European Football Associations (UEFA) Concussion Charter, which was a commitment to player welfare and player safety.
All 24 teams agreed to implement the serious measures recommended by UEFA to provide care for players who experience concussions or have injuries on the pitch. The message of the Charter was clear: if a player is suspected of concussion, they must be removed from the field of play.
UEFA’s focus on concussion follows a growing awareness of the greater risk footballers’ face of neurodegenerative diseases from head injuries. Research commissioned by the Football Association and the Professional Footballers’ Association found that ex-professional footballers are three and a half times more likely to die from dementia than people of the same age range in the general population.
The concussion and fractured skull sustained by Wolves’ Raul Jimenez following a collision with Arsenal’s David Luiz in November 2020 was the final straw that led to the implementation of the concussion substitutes rule in the Premier League. This new rule states that if a player has clear symptoms of concussion or video provides clear evidence of concussion, his team will be permitted to replace him with an additional substitute.
On 21 February 2021, Rob Holding became the first Premier League player to be replaced under the rule. The protection the rule provided to player safety was instantly demonstrated as Holding was confirmed to have concussion the following day.
Despite the proven benefits, UEFA decided against approving the concussion substitutes rule for the Euro 2020 finals. The injuries football fans have witnessed during the European tournament have undoubtedly challenged UEFA’s decision and called into question whether the Concussion Charter is effective enough for player safety.
The first incident occurred when France’s Benjamin Pavard sustained a head injury following a collision with Germany’s Robin Gosens. Pavard received treatment for several minutes before being given the green light to continue playing. Pavard later revealed that he was knocked out for 10 to 15 seconds. Controversially, UEFA confirmed that the correct concussion protocols were followed.
Only six days later, Austria’s Christoph Baumgartner received a blow to the head, went back on the pitch and was then substituted. His coach later admitted that Baumgartner had been experiencing dizziness.
Russia’s Danila was the third player in the tournament to collapse to the ground following a head injury. He was cleared to play on but was withdrawn at half time. These incidents demonstrate that football authorities need to do more to protect players’ health.
Cardiac conditions too are highly significant here, being the leading cause of death in professional footballers. Data has revealed a prevalence of sudden cardiac death of seven in 100,000 football players.
Quick application of a defibrillator can improve a patient’s survival by 75 per cent. However, when Cameroon’s Marc-Vivien Foé collapsed during the 2003 Confederations Cup in France, it took six minutes before attempts to restart his heart began. The lack of awareness of the need for speedy care contributed to Foé’s death, but the incident spurred football authorities to implement changes to reduce the risk of cardiac arrest on the field.
The English Football Association has now increased screening frequency so that players are tested between the ages of 14 and 25. For incidents where cardiac conditions slip through the net, sporting organisations have pitch-side defibrillators and medical staff trained in CPR to help resuscitate a player if they suffer a cardiac arrest.
Player safety was brought to the forefront on 12 June 2021 when Christian Eriksen experienced a cardiac arrest during Denmark’s game against Finland. Thankfully, football authorities’ understanding of the need for urgent medical attention in cardiac emergencies helped save Eriksen’s life.
The Euro 2020 finals have shown that football authorities need to take further urgent action to protect player welfare and player safety. However, as Christian Erikson’s recovery happily shows, player safety can be achieved when football authorities apply the correct protocols and have appropriate medical equipment in place.
Life after lockdown – what comes next?
As we prepare to emerge from lockdown in less than two weeks, attention is turning to what the ‘new normal’ will be like. Margreet Wittink at Renovo Care shares some reflections from the pandemic and thoughts on what may lie ahead
The 19th of July 2021. More than just any date.
We all have certain dates that are important to us, like birthdays and anniversary dates. However, this year we have been governed by dates set by the government trying to get back to a normal life post-COVID.
We seemed to be going in the right direction but then the Delta variant presented itself. The infection rates started to go up again and continue to rise but with far less hospital admissions. Opinion seems to be divided on whether we need to remain cautious and wait or return to normal life whatever it may bring. The British Medical Association is calling for caution and is asking for ongoing use of face masks and new ventilation standards.
The 19th of July 2021 will mark the fourth and final stage of lifting lockdown in England. It makes me reflect on the period since March 23 2020 when the first lockdown started.
A birthday present my son didn’t want. Being an essential worker continuing to drive to Hollanden Park Hospital on an empty M25 and A21, seeing a banner thanking those who continued to work which I appreciated so much. Taking staff temperatures which was thought to be needed for just three months but lasted so much longer.
The absolute low of the period? Losing a much loved colleague and being unable to pay the traditional respects. But never losing sight of the most important aspect of our work; keeping our patients at Renovo Care safe.
Will life get back to normal? But what is normal? Hasn’t COVID shown us all that life can change dramatically in a short period of time?
That is something that is all too familiar to our patients who come to Renovo Care for their neurological rehabilitation following stroke, traumatic brain injury, Guillain Barre Syndrome to name a few of the diagnosis we treat.
We know how important family support is to our patients and how difficult it has been for them to be at our hospital without seeing their loved ones regularly in person. The use of Zoom and Microsoft Teams has given us a way to be in touch and being able to share therapy sessions, but it has been a poor substitute.
Recently we have been able to allow family members, who take on a carer role, in again nearer the discharge date to work together to prepare for a smooth transfer from Renovo Care to home. This has made such a difference to them to know what can be expected when their loved one comes home following a major event that changed their life.
Normality. What will it look like? No more face masks or social distancing? Are we ready for it?
I think that staff and patients alike will welcome staff not having to wear masks. When one of our patients left, he actually asked one of the therapists if she could remove her mask for a moment so he could see what she looked like.
Not wearing face masks will allow us all to see facial expressions again which is so important for communicating with each other. Hats off to our speech and language therapists who had to adapt their way of working around the COVID restrictions.
Will our visiting return to the way it used to be? Successful neurorehabilitation requires 24-hour support of all the parties involved which includes family. Being able to get hugs, to be held and to be seen face-to-face by your loved ones when you are working hard to regain your independence is so important to keep the focus on the goals they are trying to achieve.
It will require a transition from staff as we’ve had a dedicated visitors’ areas away from our patient rooms and rehab facilities for such a long time now, that it will be a novelty to have visitors back in these areas again.
The 19th of July 2021; the final stage of England’s COVID lockdown roadmap. The final review will happen on the 12th of July following analysis of the latest data. The Delta variant is on the rise but so are the vaccination numbers. Renovo Care has had a successful vaccination programme for staff and patients.
It looks like it is really happening and here at Renovo Care we will be ready for whatever comes and will make sure that our patient best interests are at the heart of what we do.
- Margreet Wittink is head of therapies/ lead occupational therapist, at Renovo Care Group’s Hollanden Park Hospital
‘Like bees collaborating in a hive, achievements in rehab should be shared’
Achievement in rehabilitation should be shared and celebrated with supporters to help sustain and encourage progress, says Lisa Beaumont, whose own ten-year recovery from stroke continues with the support of family, friends and therapists
Rehabilitation works best when it is not undertaken in isolation.
Over the past month, I have been thrilled by the progress that I have made towards my goal to walk without a stick, my posture has improved significantly during lockdown and I have enjoyed walking in the garden in June’s sunshine.
My progress has reminded me of the saying, “it takes a village to raise a child”. I would like to adapt that expression to become: “it takes a village to deliver successful rehabilitation, many people have important roles to play”.
Just like bees cooperate in a productive hive, it is helpful for the patient to share their achievements with supporters, because their affirmation gives encouragement for renewed progress.
From the outset, I have been very fortunate that I’ve had the support from family, friends and therapists throughout my ten year recovery.
An important feature of the rehabilitation platform Neuro ProActive is that it makes it easy to share a patient’s progress with each of the key players in their recovery programme. For me, it looks like this:
My team is my neuro-physiotherapist, Jane Cast (neurorehabkent.com)
My representatives are my carers and sister. It is a bonus that I can keep everyone who is in my support bubble informed about my progress privately, by sharing photos and videos securely within the fully-encrypted platform.
Neuro ProActive is also a key player. Recently named as a Strategic Partner for UKABIF, we are now also part of the Criminal Justice Acquired Brain Injury Interest Group.
Prepared with assistance from Paige Gravenell (neurorehabkent.com)
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