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A national brain injury crisis

Politicians gathered in May for a Westminster debate on brain injury. Here Deborah Johnson provides the highlights.

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Chris Bryant (Rhondda, Lab) and chair of the debate opened the session by outlining the obvious and more hidden forms of brain injury.

“Sometimes a brain injury is really obvious – where the skull has been fractured or penetrated—but often the sheer force of the soft tissue colliding at speed against the hard inside of the skull bruises the brain, leading to a contusion or a haemorrhage that is outwardly invisible.

“Injuries can also be caused by stroke, tumours, infection, carbon monoxide exposure and hypoxia—oxygen starvation. These are hidden injuries with complex and fluctuating life-changing effects that strike close to the heart of what it is to be human, to be conscious, to be alive and, in many cases, to want to be alive.”

Chris Byrant, MP for Rhonnda

Barry Sheerman (Huddersfield, Lab/Co-op) raised the issue of the long-term exposure to carbon monoxide and the effect that can have on the brain. Chris Bryant said it was a critical issue which involves an element of social justice.

“Children from poorer backgrounds are four times as likely to have a significant brain injury before the age of five as those from wealthier backgrounds. We do not fully understand why as yet, and we need to do more work on that.

“However, it is also true that elderly people, who maybe cannot afford to have their boiler checked as often as others or may have landlords who do not check their boilers as often as necessary, may be suffering low levels of carbon monoxide poisoning over such a long period that they are not even aware that they are being poisoned. The memory loss, the fatigue and the problems they are having may be associated with their boiler rather than with anything else. We need to look further at legislation in that area.”

Rushanara Ali (Bethnal Green and Bow, Lab) reiterated the need for wider specialisms in hospitals and for transition support to provide much-needed rehabilitation. Chris Bryant agreed, citing his own experience of cancer as giving him insight into the needs of patients.

“If there is one thing that I have learnt from my experience of melanoma this year, it is that I, as the patient, wanted to go to the real expert, and I would travel as far as I needed to do that. Sometimes in politics it is easy to join the bandwagon when people say, ‘no, everything’s got to be intensely local,’ but the decision on major trauma centres was a brave one taken by this Government.

“The Conservatives are not a party that I support, but it was the right decision for saving people’s lives. We can now save people’s quality of life as well.”

Luke Graham (Ochil and South Perthshire, Con) highlighted the need for trauma centres to be based throughout the UK, alongside outreach for subsequent rehabilitation, especially in rural areas.

Chris Bryant stressed the need for changes to the welfare system, using the example of Jordan Bell, who had a motorcycle accident six years ago, aged 17, which have left him with significant impairments. Jordan’s father described dealing with the welfare system as “the most demoralising and depressing experience for us all.” “I cannot emphasise enough the stress this process puts on people with ABI. One woman told me, ‘I know I should use all my energy to try and get my brain back together. But I end up spending all my energy on forms — filling in forms and fighting bureaucracy’.

“An unresponsive, intransigent welfare system is effectively preventing people from healing.

“I beg ministers to take this issue seriously and to make sure that all PIP advisers are trained in the fluctuating and unseeable nature of brain injury. After all, one common feature is that patients become over-keen to please people. Often, they will tell the assessor everything they think the assessor wants to hear, because that is part of the condition.” He also raised the issues of ABI in prisons and sport.

“In Leeds Prison, 47 per cent of inmates, both male and female, have an ABI with over 60 per cent in Exeter Prison having atraumatic brain injury.

“In both surveys, the majority of injuries occurred before the prisoner’s first offence, suggesting that the brain injury may be a key factor in why they offended in the first place. If we really want to tackle their reoffending, we will have to deal with their brain injury, too.

“If we really want to tackle reoffending, we must do a better job of recognising and treating  brain injury.

“That means screening all new prisoners, training prison staff, providing proper neurorehabilitation for all prisoners with a brain injury and making special provision for women that recognises the likely different causes of their injury—particularly domestic violence.”

“With regard to sport, he continued: “I make it clear that sport is good for people’s health, and I do not want to prevent anyone from taking part in sport. I do not want all our sportspeople and youngsters to be mollycoddled and wrapped in cotton wool, but the record on sports concussion is shockingly bad, particularly  in football.

“The last season has been especially bad. Mohamed Salah, Jan Vertonghen, David Ospina, Anthony Lopes and Fabian Schär have all been involved in high-profile, very dubious decisions by the on-pitch medics.

“Let me be very clear to the football authorities. Football is failing its players. It is giving a terrible message to youngsters, parents and amateur coaches. Those authorities are putting players’ lives at risk. If they do not get their house in order, they will face massive class actions in the courts and we will have to legislate to protect players from what is, frankly, an industrial injury.”

Sir John Hayes (South Holland and The Deepings, Con) spoke about the scale of ABI and the number of families affected.

“The patterns that families endure are similar, one to another. Initially, of course, there is shock – a sense of disbelief—and the question that most people pose in these circumstances: “Why me?” Then there is a gradual realisation of the depth and scale of the effects of acquired brain injury, and an
unhappy initial concentration on what the person can no longer do, followed eventually by a reconcentration on what they can do. Most families follow that pattern when they suffer this kind of event, and that is why all that is done beyond the treatment of the initial trauma is so critically important.

“Neurorehabilitation is vital because of the dynamic character of these conditions. Most people who acquire a brain injury will change. Many will recover fully and some will recover partly, but all that takes place over a long period and is particular to each case. There is an unpredictability about the effects of acquired brain injury; it can affect physical capacity of course, psychology and cerebral function, as well as personality. Families dealing with that must cope with those kinds of changes, which can be terribly frightening for the individuals concerned and those who love them. The point is that a difference can be made by the quality of care that they receive during that rather difficult journey.”

Steve Baker (Wycombe, Con) said that babies can also acquire brain injuries from contracting meningitis, or during childbirth, and urged the Government to consider this issue.

Dr Julian Lewis (New Forest East, Con) raised the issue of personnel in the armed forces who have been misdiagnosed with post-traumatic stress disorder, when they actually have a mild traumatic brain injury.

“I believe that only two scanners in the whole country are capable of identifying mild TBI. There is not yet an adequate programme to make sure that the condition is discovered before irreparable damage is done.”

Sir John Hayes: “Often, misdiagnosis is part of that problem. Because of the characteristics of acquired brain injury that I described earlier— the changes in personality and the effect on cerebral function—misdiagnosis is all too easy. Part of our mission in bringing the all-party group’s report to the House’s attention, and doing so again in today’s debate, is to get all of Government, including the Ministry of Defence, working together to understand the breadth and scale of the problem.”

Barry Sheerman shared his concerns at the apparent decrease in numbers of people wearing seatbelts, saying he is “obsessively concerned” about road deaths and injuries. He said cross-departmental working in Government is proving difficult.

Sir John Hayes: “It is really important that local government is involved in this work, too. It is therefore not only a lateral challenge but about connecting the local approach to the national one.”

Caroline Harris (Swansea East, Lab) said early diagnosis and better access to rehabilitation is needed, but it is essential the long-term complications of ABI and its associated problems are also tackled. She used the example of George, a 23-year-old who sustained a brain injury in an unprovoked attack outside a nightclub.

“As a result of the severity of his injuries and the complexity of his ongoing disabilities, George was eventually awarded significant compensation, but this only led him to further problems. A friend introduced George to online gambling, something he had no previous interest in, but he now had the time and the money. George very quickly became addicted, making frequent and significant deposits with a wide variety of online gambling platforms. The result is that George has lost all his compensation, as well as money obtained by taking out additional loans and credit cards. At one point, he gambled and lost—this is breathtaking—£67,000 in just 40 minutes. He is now at least £15,000 in debt and, with no income, has no hope of meeting these liabilities.

“George is not alone. Research has identified that brain injury survivors are 27 per cent more likely to develop problem gambling or addiction than the general population, and that risk is found particularly among people with frontal lobe damage.

“Brain injury survivors such as George have already suffered so much, with their bright futures indefinitely stolen from them because of the trauma or illness they have experienced. They continue to suffer daily from the lasting effects of their injury as well as the associated anxiety and emotional difficulties. From an early stage in George’s addiction, the gambling platforms were made aware of his vulnerability, but despite this knowledge they continued to allow him to gamble on their sites, robbing him of his much-needed compensation, which was intended to give him a stress-free existence after his injury. Brain injury survivors are vulnerable, and at the moment the gambling industry appears to be exploiting that vulnerability.

“It is not just about gambling. The consequences of brain injury affect so many people in so many ways, and we have to start looking more closely at this issue. We need better diagnosis, better care and  rehabilitation support.”

Bill Grant (Ayr, Carrick and Cumnock, Con) said after spending 31 years of his career in the fire service, he would welcome the introduction of compulsory helmet wearing for cyclists.

“I am sure that that would reduce brain trauma injuries in the future.

“Those people’s survival is to be welcomed, although regrettably some could have a degree of disability and might have a different persona, which can prove difficult for all to cope with. The individual and their families undoubtedly need an informed and readily available bespoke support package. The onus is on us to enable these individuals to regain their dignity, which they so richly deserve, and to have an active role in our society, which is their society as well.”

Liz Twist (Blaydon, Lab) reflected on the positive reaction to the landmark Time for Change report, but that work must now be done on its implementation.

“It becomes clearer and clearer the more we look at it that acquired brain injury and its impact spread into so many different areas of everyday life, but I will focus on education and children.

“Acquired brain injury should be included in the special educational needs and disability code of practice. All education professionals should have a minimum level of awareness and understanding about acquired brain injury and about the educational requirements of children and young people with this condition—for example, with the completion of a short online course for all school-based staff.

“Additional training should be provided for the named lead professional who supports the individual with acquired brain injury and for special educational needs coordinators. We recommended that the acquired brain injury card for under-18s produced by the Child Brain Injury Trust should be promoted in all schools, hospitals and local education authorities.

“Many children and young people with acquired brain injury require individually tailored, collaborative and integrated support for their return to school and throughout their education. As agreed, a return-to-school pathway is required—led and monitored by a named lead professional—to provide a consistent approach and support for the individual, their family and their teachers.”

Jim Shannon (Strangford, DUP) stressed the importance of more support being given to people living with ABI and their families, based on his own experience of an accident which left his brother brain damaged.

“Owing to the determination of my parents and family, who took the time to care for and look after him, we were able to give him some sort of an independent life, which is very important. He is happy and safe with his carers, friends and family.

“Intensive care packages are essential to rehabilitation, and funding must be available for them. It is so important to give people who have acquired brain injury a normal life, if at all possible.”

Siobhain McDonagh (Mitcham and Morden, Lab) praised the work of Headway, which is celebrating its 40th anniversary this year.

“The reality is that, aside from Headway, most people—particularly those who cannot afford private healthcare—will receive insufficient support or rehabilitation after leaving hospital. Unless action is taken to enable people to access the vital support needed to ensure that these services survive, more and more people will be cut out of society and taxpayers will be left footing the bill for the longer-term care of those without the means to care for themselves. Considering that another four people will have been struck by brain injury during my speech, there simply is no time to delay.”

Jamie Stone (Caithness, Sutherland and East Ross, Lib Dem) said he is a passionate campaigner on disability issues following his wife’s brain haemorrhage operation and subsequent recovery 20 years ago.

“At a time, whatever happens with Brexit, when we must play to all our strengths—we must play every card we hold—we have a lot of people who have been ill or are partially disabled who have great abilities that they could contribute to the functioning of the United Kingdom and to forging a new and better future for the United Kingdom. It remains a challenge for Governments of all colours to harness those people. If nothing else, it makes them feel that they are contributing to the country and it makes them feel useful and that they are important. Self-esteem and the esteem of your peers is incredibly important to happiness and to quality of life.”

Martyn Day (Linlithgow and East Falkirk, SNP) highlighted that ABI is the biggest cause of disablement of people of working age in Scotland – around 40 per cent of working age disabled adults are in employment, compared with more than 80 per cent of those without a disability, and called for action on welfare benefits.

“The disability employment gap compounds the problems for those with ABI when interacting with that complex service. I echo the report’s call for less frequent reassessments and for assessors to be trained to understand the problems faced by those with ABI.”

Julie Cooper (Burnley, Lab) raised the issue of misdiagnosis of ABI.

“It is estimated that 24 per cent of children have some sort of brain injury, compared with 1 per cent who have autism. ABI in children is often misdiagnosed as autism or attention deficit hyperactivity disorder. The point about misdiagnosis across the board was made effectively. A particularly good example was the misunderstanding of cases involving service people.

“The combined cost of brain injury, including health and social care costs, disability support, lost work contributions and premature death, is estimated to be £15bn a year, which equates to about 10 per cent of the NHS budget. This is an issue of such seriousness and magnitude that it cannot and should not ignored.”

Seema Kennedy (Parliamentary Under Secretary of State for Health and Social Care) addressed the topic of rehabilitation prescriptions (RP), drawing on the recommendations of the APPG report, which said all ABI patients should have one.

“The National Clinical Audit of Specialist Rehabilitation for Adults Patients with Complex Needs Following Major Injury, published in 2016, found that on average 81 per cent of patients had a record of a rehabilitation prescription. The audit recommended that major trauma centres take action to improve compliance. The audit report appears to have had a significant impact.

“The latest data, from the last quarter of 2018, from the trauma and audit research network shows that the national average rose to a 95 per cent completion rate for RPs. This is good news.

“NHS England has worked with patients, clinicians and charities to improve the RP design and set new standards for communication and involvement of patients, families and carers. It is hoped that the new RP will support the development of a rehabilitation dashboard to monitor the performance of the system.”

Sir John Hayes: “Sometimes a person may be deemed to have recovered completely and to have returned to normal—whatever normal is—but their manner, meter and mood might have changed and their sense of appropriateness might have altered, and that has effects in education and employment, in particular, as well as in personal relationships.”

Seema Kennedy responded to many points within the debate, and reiterated calls for more to be done to reduce risk of ABI in sport.

“The Department for Digital, Culture, Media and Sport [DDCMS] asked Baroness Grey-Thompson to carry out an independent review of the duty of care that sport owes to its participants; her report dedicated a chapter to safety, injury and medical issues.

“National governing bodies are responsible for the regulation of their sport and for ensuring that appropriate measures are in place to protect participants from harm.

“The DDCMS expects everyone in the sports sector to think carefully about the recommendations in Baroness Grey-Thompson’s report and in the all-party group’s report. Progress has been made over the years, for example through the Rugby Football Union’s Headcase campaign and action by other groups.”

Concluding the debate, Chris Bryant said there are some issues still to be tackled, including armed forces personnel, cost recovery caps for insurance companies, school exclusions, and training and recruitment to get more people working in the area. He thanked members for their speeches.

The question was put and agreed that members urge the Government to work through all its departments to ensure that those who have sustained brain injuries are guaranteed full neurorehabilitation as needed.


Legal view by Louise Jenkins, partner and head of the serious injury team in Irwin Mitchell’s Sheffield office.

The effects of ABI can be widespread and have a significant impact on all areas of life both for the individual concerned and the family unit.

Early intervention from appropriate services and agencies is key to achieving the best possible long-term outcome.

Where there is a potential personal injury claim, it is vital that lawyers work collaboratively with clinicians to provide a seamless, best interests focused approach, with the clinician retaining overall clinical responsibility, whilst ensuring the injured person is always at the centre of decision making and fully involved wherever possible.

Signposting to support services early can make a real difference in relieving financial pressures on the injured person and their family.

Support for the family unit is critical, particularly for those caring for the injured person and to give advice and support to children to help them to understand the impact of brain injury on all aspects of life and equip them to adjust and cope with any personality change.

Assisting the injured person to achieve the best possible recovery, using the claims process where possible, should be the focus of any compensation claim, the process being a platform for helping an injured person to rebuild their life positively and engage in meaningful activity, beginning with accessing early rehabilitation through interim payment funds and expert advice on future treatment.

The claims process is ultimately there to restore quality of life and provide long term protection for those with life changing injuries.

Working collaboratively between the statutory and private sectors will ensure a smoother recovery pathway for injured people and allow them to maximise their potential.

Collaboration is ever more important given the reduced resources in the NHS and in social care.

Compensation claims have a valuable role to play in providing financial protection for life for those who have sustained serious injuries and in taking the pressure off statutory services to enable resources to be used for those who do not have a viable claim.

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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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