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Stepping up the fight against alcohol-related brain injury

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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.

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How mental health impacts physical rehabilitation

Breakthrough Case Management discuss how a client’s physical rehabilitation is inextricably linked with their mental wellbeing

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Mental health issues are all too common, with the numbers of people impacted by mental ill health rising significantly, particularly as the effects of the pandemic continue to be realised. 

And while the true extent of such problems is probably yet to be fully understood, research is continually uncovering the power of the connection between the body and mind. 

For those of us working with individuals who have experienced a life changing injury, the impact of mental health on physical rehabilitation is clear to see – in both positive and negative ways. 

With around one in four people in the UK experiencing a mental health problem every year, it’s possible that someone living with life-changing injury faced mental health challenges before their accident – which only amplifies the situation they now face.  

But even if someone has no pre-existing mental health concerns, such injury will most probably adversely affect their wellbeing. 

This can manifest in feelings of overwhelming distress, confusion, anger, fear, hopelessness, anxiety and depression or the development of phobias, panic disorder, catastrophisation or post-traumatic stress disorder (PTSD).

Awareness of mental health and its implications is vital knowledge for any case manager. Because of the close connection between the health of the body and mind, and the potential for mental struggles to impact on physical recovery, mental health support is an important element of nearly all our rehabilitation programmes.

From a Breakthrough Case Management perspective, our rehabilitation programmes will almost always bring in a qualified psychologist. We understand the impact mental turmoil can have on a client, and we work with a team of psychologists who we match with a client depending on their requirements and their injury or situation.

Mental health support should always be considered as part of a holistic approach to rehabilitation, so we work collaboratively with the entire multi-disciplinary team, to understand the challenges our clients are facing and deliver the support they need to move beyond them. 

There is so much going on for someone who has experienced a life changing injury, which might include anything from sleep problems and financial difficulties to relationship issues. We understand that when we ask someone to be motivated and push themselves physically, it’s going to be even harder if they aren’t feeling well mentally.

But while many people struggle badly with significant mental health issues, the situation can vary greatly from person to person. It doesn’t need to be a mental health crisis or severe depression to require attention and action, the symptoms can be less severe. 

Feeling overwhelmed and fearful is common after a traumatic injury, which can lead to lower motivation, reduced engagement or a wish to isolate. All of these factors can cause great distress to a person (and their family), which can also delay or impact the success of physical rehabilitation.

We see clients who sometimes feel the effort required may not be worth it. This might be because the gains don’t seem big enough, the status quo feels more comfortable, or they are frightened they will injure themselves further. 

They can withdraw, feel helpless and become anxious – but staying in that place limits potential. We’re here to help our clients take back control and look towards a more positive future.

So, what can we do when a client is struggling to cope with their mental health? The psychologist’s role in the multi-disciplinary team is vital, to identify the problem and develop a plan to address it. But every member of the team needs to be involved if a client is going to reach their goals, whether that’s getting themselves out of bed in the morning or walking a mile.

At Breakthrough, our case managers work with each client as an individual to find out exactly what they need to reach their goals and then bring together the best possible team to support them. 

This might involve a personal trainer, occupational therapist, neuro-physiotherapist, vocational therapist and psychologist for example. They will also identify any other issues that might be interacting to affect ongoing rehabilitation – such as sleep, appetite or medication – and organise professional, practical or financial help to address them.

Even before establishing a team, the starting point is to set realistic SMART goals broken down into achievable milestones, which a client can get behind and truly believe they are able to achieve. 

These goals must be backed up by trust – in the case manager, team and whole rehabilitation process. Developing this trust starts from the very first time we meet a client, where we start to build their confidence in our professional expertise and experience.

When someone has been traumatised, rehabilitation can take a long time and it is, of course, not always easy. But with a plan and the right support it is possible to overcome obstacles that might have previously felt insurmountable.

The more people push themselves forward and see the benefits of the work they put in, the more resilient they become.

A positive attitude is also important. At Breakthrough Case Management, we are naturally optimistic, and this positivity, alongside our tenacity, supports our clients. 

We won’t ever give people false hope – we never promise that everything is going to be all right when it isn’t. But what we will always do is work together to find out what is possible, set realistic goals and make the most of a client’s potential to reach those goals.

Through our own experience, we know the physical, mental and practical challenges our clients face are inextricably linked. 

We know we can support their mental health, and in turn physical rehabilitation, by taking some of the anxiety away. 

This might be something as simple as organising payment of bills or sorting out basic house maintenance, and while these practicalities are peripheral to the main problem, they are often the straw that breaks the camel’s back.

We are here to help and ensure our clients feel cared for physically and mentally, because effective physical rehabilitation isn’t possible without good mental health support.

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Are we neurological time travellers?

Lisa Beaumont looks at the similarities between young stroke survivors and people living with Young Onset Parkinson’s Disease

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Advocating for Neuro ProActive has provided many introductions to numerous neuro visionaries.

For example, my response to a recent LinkedIn message from the national charity Spotlight YOPD, representing those with Young Onset Parkinson’s, saw CEO Gaynor Edwards pop in for a socially distanced cuppa. She brought fellow YOPDer and former neuroscientist Dr Jon Stamford with her. 

Therefore, since I am always keen to talk to the best brains in the sector I was happy to host – they brought cake to make the meeting all the sweeter. Rapidly, I discovered that young ‘strokies’ and young ‘Parkies’ have a lot in common – the conversation was easy and animated.

In both cases we were living with conditions more commonly associated with the elderly than those in midlife – as the three of us are.

Sitting round the kitchen table we all had hope – and a belief that as advocates for our conditions we could and would make a difference. As the generation of personal computers and mobile phones, we will probably be using AI to make some of that difference. Three smartphones sat alongside the mugs of tea and cake plates on the table. 

Health technology apps like Neuro ProActive in the hands of the right people – those impacted neurologically – is a potential game changer. 

I was  fascinated to hear from them about how much they feel an affinity with young stroke survivors, like me.

Three reasons for affinity between stroke survivors and YOPD 

1. We defy expectations

Most importantly, both groups, ‘Strokies’ and ‘Parkies’ face a shared challenge in that our conditions are popularly associated with elderly patients not mid-life people, like us.

2. Digitally capable

Thanks to our relative youthfulness, we are a tech savvy patient community and have the confidence to ask questions and demand attention from medics and peers.

Both our charities, West Kent Different Strokes Peer Support Group and Spotlight YOPD are so excited about the roll-out of Neuro ProActive nationally and internationally.  We both support cohorts of  young patients who will welcome the opportunity to have some agency in their treatment programme by being empowered to self-manage their condition digitally.

3. Multi-disciplinary teams

Despite the clear difference between stroke rehab’s management of rehabilitation and YOPD’s need to manage its degenerative symptoms, both groups share the need of input from a range of AHPs.  

Access to neuroproactive.com will give us an easy platform to reach those practitioners with whom we will be able to communicate, record progress and set goals in one place.

The identification of these three similarities between stroke survivors and YOPD reminded me of this quotation from Shakespeare: “Misery acquaints a man with strange bed-fellows”.( Tempest Act 2, scene ii).

Neither group feels miserable. By contrast, we feel excited. We are happy to promote the possibilities for improved care for our conditions in future.

I have discovered a new empathy for those who are diagnosed with Young Onset Parkinson’s Disease, and those who remain undiagnosed. It is significant that reliable data is hard to find for this condition.

It is a game-changer for Neuro ProActive that Ian Pearce tweeted  news in December 2021:

Delighted to announce that, following a public tender, ⁦@NeuroProActive⁩ will be adopted by the South Wales Trauma Network. This will involve integration with EPRs and an independent research study on 500+ patients funded by The World Economic Forum. 

Value Based Healthcare Wales. Likewise the news of its adoption by Leeds Children’s Hospital. 

More patients and data will deliver better outcomes for all neurological conditions, which like Shakespeare’s themes can apply to any age. Strokies and Parkies feel old and young simultaneously.

Therefore, we feel like time-travellers.

You can get your own glimpse of the future by visiting www.NeuroProActive.com

And follow @neuroproactive on Twitter for the latest news.

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The desire for discharge home

Renovo Care Group share a case study of delivering the rehabilitation and goals to help achieve the return home

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One of the most common patient goals we work towards in acute neurorehabilitation is often the one to be discharged home or to an alternative placement.

We recently had a patient admitted for a six-week assessment period to determine whether an escalation of distress was psychologically driven, neurologically driven or a mixture of the two. To give a bit of context to this situation, this gentleman had cerebral metastasis in his right frontal lobe secondary to lung cancer and had been sectioned several times over the past year due to risky behaviours towards self and others. Whilst he had a few goals that he wanted to achieve during his time with us, the main one was to go home to his family after rehabilitation.

Given that we had a short assessment period, the first question we asked ourselves was how were we going to work with him to achieve his goal?

Upon his inpatient admission, the gentleman was seen twice a week by physiotherapy and two to three times a week by neuropsychology for assessment. Physiotherapists and neuropsychologists are guided by evidence-based practice in their professions and use their knowledge from practice to develop the evidence.

After understanding the cause of an injury, they work to ease physical and psychological symptoms using a variety of techniques. Assessments using outcome measures and formulations are conducted to gain a holistic view to help to determine the best course of treatment for a patient. 

The main goal of physiotherapy sessions for this individual was to improve his endurance, strength, and participation in activities that he enjoyed. He was measured for his upper/lower limb strength using the Oxford scale. ROM (Range of Motion) and MAS (Modified Ashworth Scale) were also used to identity that he had a normal passive and active range of motion over all joints, and no muscle spasms were evident.

Finally, we assessed using the Berg Balance Scale, which is an objective way of determining how well a patient can safely balance during a series of predetermined tasks. He scored 55/56 which indicated a low risk of falls.

Initially the main goal of neuropsychology was to assess the gentleman’s cognition, behaviour, and emotions to hypothesis whether the distress he displayed was neurologically driven.

Maja Kreninger, physiotherapy assistant

Whilst he was previously screened using a brief cognitive test several years earlier, there did not appear to be a reassessment since the cerebral metastasis diagnosis. Therefore a comprehensive baseline to measure any further changes was required.

During inpatient sessions, the gentleman completed a battery of psychometric assessments to measure his current level of cognition. This included a test of premorbid functioning to find out an estimate for intellectual level before diagnosis, a current level of cognitive functioning (after diagnosis), language, attention, memory, and executive functions (higher-level thinking skills such as planning, cognitive flexibility, decision-making etc).

His behaviour and emotions were tracked over time using a mood/ behaviour diary filled out by ward staff. Mood and quality of life measures were also completed.

Our second question then became, how ethical is it to just provide an assessment when an intervention may also prove effective?

The simple answer is that it is not ethical. What is the point of putting a person through intensive assessment that may evoke anxiety or frustration if you aren’t going to provide them with the tools or strategies to support the areas of difficulty? It was obvious that this individual wanted to go home after his assessment period, but it was likely that he would still benefit from having neuropsychology and physiotherapy input.

The model we jointly decided on with him was for him to come in as an outpatient one day per week. With input from his family, he concluded that Wednesdays were a good day for him to travel to the hospital, engage in his sessions and travel back home. That way his preference of living at home and receiving neurorehabilitation could be adhered to.

Initially he was scheduled in for two neuropsychology sessions and one physiotherapy session with rest breaks in between. However, it became apparent after the first outpatient appointment that he was unable to cope with the high cognitive and physical demands placed on him in his sessions and catching the bus all in one day.

In order to manage his fatigue levels neuropsychology sessions would reduce to once a week to and the number of weeks that he would be an outpatient would be extended to ensure that he received the intervention required. 

As part of the physiotherapy intervention, the gentleman commenced a personalised strength training program using multiple gym machines. He was given a booklet with details about the exercises, correct methods, resistance, and repetitions so that he could access the gym on his own.

Joint sessions with Occupational Therapy were completed to ensure he could access the community, and exercises helped increase aerobic tolerance. This proved to be successful as he was able to independently go into town to complete activities of daily living, e.g., buying presents, going to the hairdressers etc.

As fatigue was one of the challenges encountered during sessions, physiotherapy focused on gradually increasing the amount of activity completed in a graded, flexible way that was monitored continuously. 

Similarly, neuropsychology also created an individualised intervention to help build his awareness into his brain injury. The intervention consisted of six sessions to improve knowledge of the structure and function of the brain, neuroplasticity, fatigue, and cognitive and emotional changes after brain tumour.

The sessions highlighted strengths and weaknesses of his cognitive, behavioural and emotional profile providing feedback from the neuropsychological assessments. It also included strategies which could be implemented to support the gentleman at home. He was given his

Ellie Knight, assistant psychologist

own folder with all of the session information to use as a memory aid and to share with family. 

Over time, he began to recognise his limitations in relation to fatigue and understood that he could take breaks, complete tasks when he was less tired and show self-compassion.

He reported that his brain injury awareness improved, and he felt much steadier on his feet. He started to engage in community activities such as going to the cinema and regularly walking near his home. After seven weeks as an outpatient the gentleman was discharged from our neurorehabilitation service – his main goal achieved. 

Upon reflection, the first step of his rehabilitation was setting SMART (specific, measurable, attainable, realistic, and time-related) goals that were tailored to his needs and wishes. This improved his motivation and confidence to participate in sessions knowing that we were all working with him to achieve discharge home.

Developing a sense of strength is a personal journey for every patient, whether it is physical, mental or in an everyday setting. As rehabilitation practitioners it should be our duty to assist them in this journey which will lead to improving their wellbeing and quality of life.

  • Written by Maja Kreninger (physiotherapy assistant) and Ellie Knight (assistant psychologist) of Renovo Care Group

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