Acquired brain injury (ABI) is one of the leading causes of disability within the UK and can have a significant impact on the daily lives of survivors and their families (Khan et al., 2003).
Difficulties include physical, emotional, cognitive and behavioural changes, and with many experiencing little or no physical impairment, ABI is often referred to as a “silent epidemic”.
Case management is dedicated to supporting and coordinating the rehabilitation and care of individuals with complex needs including ABI.
Brain injury case managers (BICMs) offer support to survivors with mental capacity issues and problems with informed decision-making.
The cognitive impact of ABI, namely executive dysfunction, can impact many skills such as planning, inhibition and controlling emotions; all of which can hinder the ability to make informed decisions.
Executive dysfunction is also linked with increased risky behaviour; substance and alcohol misuse, criminal involvement and suicidality, which raises further concerns around capacity.
The Mental Capacity Act (MCA) is a legal framework designed to guide the assessment of an individual’s capacity to make decisions.
The House of Lords Select Committee (HoLSC, 2014) highlighted that the MCA does not meet the needs of those with specific conditions, including ABI.
The current study explored BICM’s views and experiences of working with brain-injured clients with capacity issues.
A total of 93 BICMs took part in a survey, with 12 taking part in further interviews.
All respondents had experience of working with ABI and capacity issues.
A total of 62 per cent reported having clients make repeated unwise decisions but be deemed to have capacity, and 92 per cent reported disagreements with other professionals regarding the outcome of capacity assessments.
Disagreements with other professionals were mirrored in the interviews, with one participant stating they “happen on a day-to-day basis”.
Five main causes of disagreements were reported; a lack of brain injury knowledge by other professionals, a lack of collaboration with individuals who know the client well, the framing of the questions, professionals having their own agenda, and the “cloak of competence” that can mask difficulties that manifest outside of the assessment environment; while clients often appeared to have capacity within an interview context, many were unable to adapt their behaviour accordingly in real-life situation due to executive dysfunction.
Three other main themes were identified; implementation of the MCA and capacity assessments, ABI as a hidden disability, and the vulnerability of ABI survivors.
Participants reported risky situations their clients had found themselves in despite being assumed to have capacity because their cognitive impairments had been disregarded.
One of the principles of the MCA is not to assume a lack of capacity due to unwise decision-making.
Concerns were raised around the Act’s description, or lack of “unwise decision- making”, with 92 per cent of survey responses reporting the Act to be unclear.
Changes within the guidance for the MCA, with a focus on description and clarity, should be considered to make it more applicable to brain injury.
The research also recommended the importance of health and social care professionals having an in-depth knowledge of the invisible consequences of ABI before commencing capacity assessments; a recommendation supported by the updated guidelines for the MCA (NICE, 2018).
Where possible, assessments should not be conducted in isolation, but rather take place in collaboration with others who know the client well, and should involve real-world observations of functioning.
This study was supported by the British Association of Brain Injury and Complex Case Management (BABICM), which is made up of registered professionals with a health and social care background from a range of professions, including occupational therapy, nursing, and social work. Sophie Moore, is a researcher at theUniversity of Plymouth.
Khan, F. Baguley, I.J. and Cameron, D. (2003), Rehabilitation after traumatic brain injury. MJA Practice Essentials, 178, 290-295.
House of Lords Select Committee on the Mental Capacity Act 2005. (2014), Mental
Capacity Act 2005: post-legislative scrutiny. House of Lords: London, UK.
National Institute for Clinical Excellence (NICE). (2018). Decision-making and mental capacity. NICE guideline [NG108]. Available at: https://www.nice.org.uk/guidance/ng108/chapter/ Recommendations-forresearch# 1-training-and-support-for-practitioners. (Accessed 22 December 2018).
How mental health impacts physical rehabilitation
Breakthrough Case Management discuss how a client’s physical rehabilitation is inextricably linked with their mental wellbeing
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.
Are we neurological time travellers?
Lisa Beaumont looks at the similarities between young stroke survivors and people living with Young Onset Parkinson’s Disease
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.
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.
The desire for discharge home
Renovo Care Group share a case study of delivering the rehabilitation and goals to help achieve the return home
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.
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
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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