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.