Due to the nature of hidden impairments in brain injured individuals, they may be assessed as having capacity to make their own decisions when they cannot. As a result, they can be vulnerable and find themselves in dangerous situations.
People working with brain injured service users must be aware of how this injury impacts decision making and be prepared to share and explain this to other professionals.
The Mental Capacity Act (2005) is presumably familiar to most people working with individuals with a brain injury or mental impairment.
It refers to how we should assess the ability of people with mental impairment to make a specific decision, based on whether they can understand the information, retain it (for long enough to decide), use and weigh that information when deciding, and communicate their choice.
The quality of said decision is not a criteria – someone with capacity has the same rights as everyone else to make unwise decisions (and suffer the consequences).
The implications of these decisions can be significant. Some examples of capacity assessments faced by our service userscan include their capacity to manage their own money, decide where to live, to decide whether they will access intervention or support, either formally or in their day-to-day life.
Other decisions may cover lifestyle choices, such as whether to eat junk food, smoke or drink.
The person making the decision about capacity should be the professional who is responsible for the final decision or action.
This can be a diverse range of professionals including social workers or care coordinators, care managers, GPs, surgeons, dentists, support workers, clinicians and nurses, to name a few.
Although the assessor is likely to have expertise in their own particular area, and therefore understand the decision best, they may not always be the person best placed to understand the client.
Gilbert and George (2018) point out that for people with brain injury, assessment of their ability to make decisions often requires both expertise and experience in brain injury and how it can present.
They refer to the “frontal lobe paradox”, which is the ability of individuals with damage to executive functions but often intact speech and social skills to do very well in formal office-based assessment tasks, and yet struggle significantly in their day-to-day life.
Someone unaware of this possibility may unwittingly take a service user at face value.
They may not realise the information they are missing, or may find it hard to understand how someone self-evidently capable of talking and reasoning can at the same time be oblivious to their own difficulties or incapable of putting their plans into action.
One difficulty is that at the surface level, these difficulties may not appear to be related to cognitive impairments.
Just as difficulties with motivation and planning can be misinterpreted as laziness or depression, and impulsivity may be seen as being rude or “not listening”, service users with executive functioning problems can be mislabelled as an individual with capacity who happens to make unwise decisions – often repeatedly.
Just as with the earlier examples, this mislabelling can mean they are unable to receive the support, treatment and assistance that they need. In worst case scenarios, this can lead to being put in vulnerable situations, to increasingly risky and criminal behaviour, to failed discharges.
So what are the issues that may come under the “frontal lobe paradox”?
The paradoxical ability of the individual to perform very well in a one-to-one setting, but to struggle in the “real world”, makes more sense when we remember that assessments are not really very similar to the real world.
In most assessments, we make the effort to control the environment and the situation as much as possible. We reduce distractions, and clearly describe the task, and make sure all the information they need is clearly laid out. The task – almost always just one single task – is clearly explained.
Compare this to the real world. In most everyday situations there are distractions and competing pieces of information we need to pay attention to.
We’re frequently performing more than one executive functioning task at a time – someone shopping is both using working memory and planning skills to think about their meal and what is required, and also using visual scanning and attentional skills to find the items they need, whilst also paying attention to their surroundings, trying not to walk into people, coping with stimulating environments and possibly keeping one eye on the time.
Performance in the former situation is not likely to be an accurate reflection of performance in the latter.
Consider also the role of impulsivity, which may not be apparent in an office setting where someone is focused on how they are performing in an assessment, but is likely to be a difficulty in an environment where there are many distractions and the person is potentially paying less attention to their own behaviour.
Many of the problems described above could be overcome or compensated for, were it not for the role of insight. Insight in this context is associated with the ability of an individual to self-monitor and evaluate their actions and connect these to the consequences or outcomes.
Someone with a lack of insight will be genuinely unaware of their own difficulties or limitations, no matter how obvious they may seem to other people.
These service users may tell you that their memory is fine, even though they don’t remember having this conversation with you many times before. They may see no problem with staying within a budget, even though they have failed in every previous attempt.
Sometimes it may be that they do not recall their previous difficulties and cannot learn from the experience, but often when reminded of their previous attempt they still cannot accept their difficulties.
A service user with insight difficulties is unlikely to be able to use and weigh information about how their impairments impact on the decision to be made, or make accurate predictions of the outcome of any choice.
They’re also unlikely to be able to identify what kind of support they need. They’re extremely unlikely to be able to bring their difficulties to their examiner’s attention.
Additionally, as service users without insight may not see the need for support or the consequences of actions, even if they have access to support or strategies, they may not realise when they need to use them.
Overall, these difficulties are unlikely to be immediately apparent to an external professional. To someone who works closely with the service user, who has seen them in a variety of settings and knows their pattern of behaviours, they may be hard to miss.
The 2018 National Institute of Clinical Excellence (NICE) guidelines on assessing capacity make specific reference to executive difficulties, and recommend both real life observations and consulting other professionals involved in the individual’s care.
Caution should be taken about the information requested from professionals – for example, some professionals may only see service users in controlled, individual sessions and be equally vulnerable to these errors.
Even cognitive assessments attempting to measure executive functioning are affected by the frontal lobe paradox, although some cognitive assessments have deliberately attempted to overcome this difficulty by mimicking a real-world situation.
For example, the Multiple Errands Test, which is performed in a shopping centre, is known to identify difficulties in clients who have otherwise performed well in more controlled assessments.
It may be essential to seek information from people who see the service user regularly, day-to-day, in a variety of situations – including nurses, therapy or activity coordinators, support workers or family members.
These people may be uncertain about questioning a perceived expert opinion, but can report feeling surprised by the outcome of professional assessments, given their own observations.
This may include observations of an individual who can sit down and add up the cost of items in a session and recall their budget, but in each shopping trip they regularly bring more items to the tills than they can afford, or a person who uses strategies such as Google Maps to plan their route, and is in constant imminent danger of walking into traffic because they are looking at their phone rather than the road.
This would be best practice; however it competes with pressures on time and resources in many services. Also, most services are dedicated to empowering service users, and are all too familiar with the need to advocate on their behalf against risk adverse professionals.
In these circumstances, faced with an individual who is articulate and knowledgeable and by every usual standard performs well, it is easy to see how the assessor may want to believe they are capable and autonomous.
It is our role to do our own advocating for our clients, and not only explain what difficulties we see, but the subtle underlying impairments that they represent, so that the assessor has all the information they need to make a good quality capacity decision.
Dr Jennifer Tibbles is a clinical psychologist and Warren Bridges is a nurse associate at Cygnet Heathers, a neuropsychiatric rehabilitation facility in West Bromwich. For more information please call 0121 796 2731 or visit www.cygnethealth.co.uk
George, M. S., & Gilbert, S. (2018). Mental Capacity Act (2005) assessments: why everyone needs to know about the frontal lobe paradox. The Neuropsychologist, 5(1), 59-66.
The family experience of brain injury
After a person acquires a brain injury, the impact on the whole family can often be life changing as they adjust to a new reality and relationships come under intense pressure…
Karen Ledger (KL): When brain injury occurs, it’s like a bomb going off in the family. Life will never be the same again for any of the members of that family.
People will be shocked, bewildered and overwhelmed, and they then have to go through a complicated process of adjustment, and people reach that adjustment at different stages.
The person with the brain injury will generally have a neuropsychologist assigned to support them. Most will pay attention to people’s feelings and emotions, but the rest of the family may not have any psychological support.
This situation doesn’t get better of itself without professional input, it can get worse and people’s mental health can and often does spiral down.
Louise Jenkins (LJ): It’s a particular challenge if you’ve got someone with little or no insight. They often won’t recognise the need for or be willing to engage with neuropsychological treatment until much further down the line, by which stage, the family may have entered a more advanced stage of crisis and their whole family unit may be at risk of breakdown. There are complex emotions involved in the adjustment process following trauma which include shock, guilt and loss.
KL: That’s a scenario we see a lot. The client’s relationships may get to an advanced stage of deterioration and as Louise says, crisis, before they’re able to accept help. This is often because there is an immense amount to absorb from their new world of injury, rehabilitation and the medico-legal process and clients do not have the psychological space to consider how they are, never mind undertake the rehabilitation.
LJ: That’s where some of the challenges come in from the legal perspective. The compensation claim process is quite rigid in that generally speaking, only the injured person can claim for financial losses and for professional support, but we maintain that as the underpinning principle for compensation claims is to restore someone to their former lifestyle, you have to consider them both as an individual and as part of the family unit. We try to build into the claim some therapy sessions not only for the injured person but also for their spouse and their children.
Some defendants (compensators) say they’re happy to support that because, if the family unit breaks down and the uninjured spouse has been providing a lot of the day-to-day support, prompting and encouragement that the injured person needs, the cost of commercial care to replace that support is significantly more expensive than the amounts you can recover in a claim for support provided by a family member. It is also about embracing the spirit of the Rehabilitation Code and Serious Injury Guide in looking at the wider family need.
KL: Often, people can’t work anymore; they feel their work is taken away from them. People get their sense of identity out of work, as well as from being a spouse or a partner, a father or a mother. And if they lose their ability to earn and their relationships start to deteriorate these are often perceived as more failure and thereby serve to reduce a client’s confidence and self-worth.
LJ: It is akin to a bereavement process for the uninjured partner, yet the person is still there with you.
KL: People don’t have to have a death to experience loss, and loss can activate a bereavement process. So they’re grieving for the person they once knew, and now they’ve got this new person which makes adjustment to the injury complicated. And the thing about brain injuries is they’re hidden. The person looks the same but behaves differently to how they did before. It understandably takes a long time for clients and family members to really grasp the effects of brain injury, because they’re often traumatised, angry, discombobulated and distressed.
The family that includes somebody with a brain injury goes through a process of understanding, just as the client hopefully does. It’s a complex situation trying to comprehend what a brain injury means whilst feeling bereaved.
Family and children’s therapy is relevant too. Children often get missed because they deal with loss and trauma in different ways to adults. Children tend to get on with their lives, as if it’s not happening, so they need particular attention. They won’t be talking about it so much, but they’ll be experiencing it. The sooner that’s managed by specialists, the better it will be for children in the longer term, giving children the best chance of allowing normal development to take place.
LJ: It’s difficult because there’s a significant investment of time and energy put into implementing a rehabilitation programme and support around the injured person. This is integral to the claims process. The spouse can feel as if all the focus is on the injured person and they’ve been left out.
From a legal perspective, we try to involve the uninjured spouse as much as possible in discussing what we’re doing and why we’re doing it. We try to weave in that therapy support for the uninjured spouse so they come along the journey with us rather than becoming a disrupter to the rehabilitation programme because they feel excluded and unsupported. If securing interim payments through the claim to fund support is challenging at an early stage, our in-house team of client liaison managers, all of whom have a healthcare background, can provide time and input in discussing the challenges and in signposting for support both for the uninjured spouse and children as well as for the injured client. There are some really valuable resources for children, for example, which explain some of the problems that can arise in a parent who has sustained a brain injury to help them to understand and come to terms with changes in the family dynamics.
KL: People affected by brain injury can feel deserted by their partner and like a single parent. This is because they’ve lost their partner’s contribution to childcare and work in the home. The complexity and challenges of living in these circumstances should never be underestimated.
LJ: At the point of injury, they are in shock and just want to be there for the person who’s injured. I’ve worked with a number of people where the grief and adjustment process is very substantially delayed. These delays extend to weeks, months or even years.
They’re in a fight/flight/freeze situation. They’re managing a situation that’s about life and death initially in the most serious cases. When the acute stage is over and they have some space to start thinking about themselves, rather than the person who’s injured, they can start reflecting. It’s an emerging awareness that it’s never going to be the same again, that some degree of permanence will remain with the injuries, that this is how it will be in the longer term and a realisation that you need support to adjust to the new normal.
KL: It takes a while for that realisation to come in. I am often working with partners who are in that process of adjustment and what initially attracted them to the person pre-injury has been lost post injury, for example agile thinking and intelligence. Moreover they now find themselves in a caring role and one where many strangers are entering their home and talking to them in alien language! It’s not surprising that for many people this is often too challenging for them to manage and why therapy is needed as soon as possible for clients to regain their own personal power as soon as possible. They will have a private listening, respectful and tender place for them when the rest of their lives are so exposed.
LJ: They don’t know where that injured person is going to land with their recovery in the longer term. There’s a natural recovery process of a minimum of two years following brain injury, often longer, and they don’t know how much recovery the person’s going to make. They’re living with that uncertainty for a long time before being able to understand and adjust to what the long term will look like, often with significant physical, cognitive and behavioural changes which place great strain on sustaining relationships. Independent family law and financial advice is often essential to protect both parties in the event that the relationship does break down.
KL: I believe that acquired head injury is usually devastating to the person and those around them. However, in my experience, people are often amazing in how they find the strength to establish new ways of being and making their life work for them. Therapy can often speed up that process because clients feel heard, respected and understood, a powerful combination for a restorative process particularly when they are so often feeling powerless. This process can help families stay together or decide to go their separate ways and with support they are more likely to do this without acrimony and additional trauma. Observing and supporting clients and their loved ones to dig deep to find the strength and commitment to establish a new life is such an amazing privilege and honour for me.
LJ : When the claims process is managed by expert serious injury lawyers, early access to specialist rehabilitation and support will enable an injured claimant to restore their life to the best possible position and allow them to maximise their potential for the long term, restoring a sense of control and positivity for the future. Working together with therapists like Karen is essential to ensure that a multi-disciplinary network of support can be put in place in order to support an injured person to achieve their goals and rebuild their life as an individual and as part of a family unit after a life changing injury.
Louise Jenkins is a partner at Irwin Mitchell and leads the serious injury team at the firm’s Sheffield office. Karen Ledger is managing director of KSL Consulting and a therapist, counsellor and supervisor with over 30 years of experience.
From brain injury to Bafta
Hannah Currie lovingly captured her uncle’s struggle with brain injury through a lens, and shared his story with the world, as Jessica Brown reports.
When they first got together, Paul and Lindsay Devereux didn’t seem like the most obvious match. Paul was from Dublin, and he ticked more than a few of the stereotypical Dubliner boxes – he liked a pint and didn’t take himself too seriously, and he had a thick Dublin accent.
Lindsay was the sensible one. She was a nurse from Scotland, with a master’s degree. But they clicked.
They both loved travel and adventure, and travelled the world together, driving through the US in a campervan.
On their return, they settled down and built a home together in the mountains outside Dublin. Paul worked as a painter and decorator – until he had an aneurysm ten years ago.
He had surgery to remove a second aneurysm from his brain, leaving him with a brain injury, and severe short-term memory loss.
Now, Lindsay gets up at 5am to get to Dublin, where she works as a nurse, and on top of this she helps care for Paul.
The couple are in debt, and they don’t have much support outside immediate family.
But this year, things took a turn for the better after a documentary about the couple, made by their niece, documentary filmmaker Hannah Currie, premiered internationally and won a Bafta Scotland award for ‘best short film’.
Currie, 31, has wanted to make a film about her uncle since the injury. She worked in media, but worked on the production side, helping other people make their films.
“I always wanted to be a documentary film maker, but thought it wasn’t accessible to me as a woman, and as someone who didn’t have the confidence in her abilities,” Currie tells NR Times.
“But the urge wasn’t going away, and I decided to go back to university and do a documentary directing course, which was the first time I picked up a camera.”
After completing her Masters in Screen Documentary course, Currie successfully applied for funding from the Scottish Documentary Institute and finally got to work on the documentary she’d been wanting to film for ten years. But it was a much more difficult experience than she could’ve anticipated.
“It was a really hard film to make because there’s so much to their story,” she says. “Paul’s aneurism and the fall-out from that affected every area of their lives.”
Paul smokes and drinks, she says, and doesn’t understand why this puts his health at increased risk, given his medical history.
But his maladaptive behaviours were one of the reasons she wanted to make the film in the first place.
“Some members of my family got frustrated at Paul because he kept on drinking and smoking. They said he needed to take responsibility for his behaviour. I was curious to hear his side of the story; if you’ve gone through this and your only crutch is smoking or drinking, then why not? I was keen to explore that.”
But somewhere along the way, the film became more about Lindsay, and not just Paul.
“Paul’s not going to get better, he’ll make small improvements but he’s always going to live with his injury. But I hope my aunt will find light in the situation.”
Currie hopes her aunt can start speaking to other families going through this and help them.
“If something good can come from this, I think she’ll feel validated that her decision to stay in this situation and sacrifice her life for another person will be worth it.”
Her grant was for a short film, and Currie found it difficult to know which bits of footage to leave in.
“When I finished it, I thought it missed the mark. But when people started contacting me, especially families of people with brain injuries, saying the film had had a big impact on them and brought them a lot of comfort, I realised I was being harsh on myself.”
Devlin says she felt enormous pressure to do the film, and her family, justice, especially because the funding came from public money.
She also struggled to get a balance between handling it sensitively and making something that people would want to watch.
“When you’re making a film, you’re making a piece of entertainment. It needed to hold people’s attention long enough to get an important message across.”
The film’s title, ‘That Joke Isn’t Funny Anymore,’ references Paul’s habit of repeating jokes.
“It’s funny and bizarre to watch, then it becomes not so funny. But I wanted to do him justice, because he does talk about things other than jokes.”
She was in her early twenties when it happened, and she remembers her uncle being a ‘burst of energy’.
“He’s a great guy. He hasn’t changed. If you catch him on a day where he isn’t too fatigued or he hasn’t had a drink, you can have a conversation with him, but he’ll forget things when he gets tired.”
Currie had sleepless nights over the decisions she made when editing the film, but her uncle was ‘over the moon’ when she sent him the final cut.
“Even though it might’ve been difficult for him to watch, he needed to sign it off. I sent it to him and he said everything in it was true.”
Currie says the feedback she’s had since the film’s release has been ‘overwhelmingly positive’. It premiered at DOC NYC in New York and DOCFEED in the Netherlands, and Currie took Lindsay with her.
“She’s been suffering in silence for ten years and had to get on with it and provide. A lot of friends abandon you when this kind of thing happens, because they find it difficult to be around someone who displays this behaviour,” Currie says.
The reaction to the film is helping her learn to believe positive feedback and be more confident in her abilities.
“The first minister Nicola Surgeon tweeted about it, she probably didn’t feel the need to be nice, she probably just liked it,” Currie laughs.
“I might not be super confident, but I have empathy with my characters and I’m able to make people feel confident enough to tell me their stories,” she adds.
You can watch That Joke Isn’t Funny Anymore on BBC iPlayer here.
Time for domestic abuse legislation – Lord Ramsbotham
Lord Ramsbotham, treasurer of the criminal justice and acquired brain injury interest group and former chief inspector of prisons, has vowed to help get screening domestic abuse victims for brain injury into legislation
Earlier this month, MP Chris Bryant put forward two amendments to the Domestic Abuse Bill, stated that female prisoners must be screened for acquired brain injury, including concussion, within two weeks of starting their sentence.
Bryant also put forward an amendment that women who have been the subject of domestic abuse should be screened for traumatic brain injury.
Ramsbotham is in touch with Bryant and has told NR Times he will take the amendments through the House of Lords, propose them at second reading and follow them through to the committee stage.
“I’m looking forward to the Domestic Abuse bill coming to our house in the autumn. I think they will have a lot of support because there’s a lot of cross-party interest in all these issues,” he says.
Testing female prisoners for brain injuries when they come into a prison could help to improve staff members’ understanding of what treatment the prisoners will need, and could help give rehab efforts sharper focus, he says.
Ramsbotham says he first became an advocate for improved support for prisoners with a brain injury when he was chief inspector of prisons in the late 1990s, on a visit to young offender’s institute HMP Glen Parva in Leicestershire.
“I found a 16-year-old boy sitting on his bed, rocking. He’d suffered a brain injury when he was three months old, when his dad picked him by the ankles and swung him against a radiator. The prison could do nothing for him.”
Ramsbotham then visited a brain injury unit at St Andrews hospital in Northampton.
“I discovered there that the treatment of brain injury was completely alien to what was going on in prisons because the treatment at St Andrews required stimulation – not being locked up in a prison cell for 23 hours a day.”
In a follow-up report at the time, Ramsbotham called for assessments, arguing that they help shed light on which part of the head has been hit or damaged, which can help staff predict a prisoner’s behavioural outcomes. But it was turned down.
There hasn’t been any progress in legislation, he says, since then-prime minister Theresa May dropped the government’s commitment to a prison reform bill in 2017.
“So when the criminal justice and acquired brain injury interest group asked me to be their chairman, I leapt at it because it seemed it was the place for which I could continue my campaign,” he says.
Ramsbotham hopes the reform will come soon, especially since the Covid-19 pandemic has highlighted the ‘unacceptable’ conditions in prisons, where mental health, he says, has come to the forefront, particularly those with brain injuries, he says.
Ramsbottom is strongly in favour of link workers going into prisons and making contact with people with brain injuries during their time in prison and for six months following their release.
“I don’t think the probation service is yet attuned to the needs of people with acquired brain injuries. We no, at the last count, only 18 per cent of community commissioning groups realise they have any responsibility for funding probation. I would wish to get that amended, too.”
The second reading of the Domestic Abuse bill in the House of Lords yet to be scheduled.
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