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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…

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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.

 

 

Legal

Brain Injury Group – providing practical answers for 10 years

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For the past decade, Brain Injury Group has been supporting people with brain injuries to access the right support for them, working with an array of law firms – alongside other service providers and case managers – to give a comprehensive offering of connections, advice and signposting to clients across the country. NR Times learns more 

 

Tell us about the Brain Injury Group and its aims

Brain Injury Group was set up as a membership organisation for law firms with specialist brain injury claims teams, to promote the importance of instructing a specialist lawyer following a brain injury. 

Our core values – to ensure that those affected by brain injury have access to the specialist support they need to help them receive the right rehabilitation at the right time and to support them to rebuild their life– have remained throughout our ten-year history. Our members can advise not just on claims, but also education, employment, family matters, continuing healthcare funding and the Court of Protection.

In addition to our website, which contains a range of useful information for the individual, families, and carers, we also offer support via telephone, email, and live chat on our website; not just to those who have a claim, but to anyone who has suffered a brain injury – if we cannot help ourselves, our aim is to signpost to services who may be able to.

We’ve also created a large directory of goods and services online, who can assist not just those who have sustained a brain injury, but the businesses who support them – so a one stop shop for goods and services from accessible holidays to specialist medico legal report providers, and much more in between.

Finally, we are recognised as providers of high quality CPD training, primarily for catastrophic injury lawyers, but also for case managers and therapists. We also provide free access to our training for the NHS and are happy to deliver bespoke sessions for them, which proved popular with neuro navigator teams in London. Our training covers a range of medical, legal and rehabilitation topics and we aim to deliver it in a neutral, friendly way, making it relevant to both claimant and defendant teams.

Who are your members?

Membership of the Brain Injury Group consists of three different streams; firstly, our law firm members who, in order to be accepted as members of the Group, must satisfy our joining criteria to ensure they really are specialists in the field of brain injury claims. Secondly, we have associate

Sally Dunscombe, operations director

members who provide supporting services to our law firm members, so for example medico legal agencies, IFAs and mental capacity assessors. 

Finally, in 2020, we introduced our case manager membership which is actually open to residential rehabilitation facilities and therapists as well as case management organisations throughout the UK – we also have one member who is based in the Republic of Ireland.  This has been our fastest-growing membership stream and we’re really pleased to be working more closely with so many excellent case management companies who have a particular interest in brain injury. 

As part of their membership they receive free or discounted access to our training, allowing them to enhance their knowledge of brain injury, for

the benefit of their clients.

What are the benefits for a client of contacting Brain Injury Group rather than a law firm direct?

Firstly, we’re not a claims management company, so if a client contacts us, we are simply providing them with contact information of law firms who they can be assured are specialists in the field of brain injury.

This is so important as brain injury claims can be very complicated, and depending on the nature of the injury, can take many years to settle, so its important someone is confident in the abilities of their lawyer, and that that lawyer is experienced in this type of claim and is able to arrange the rehabilitation, care and support that person needs – not just for the duration of their claim, but for their entire future.

We always recommend people speak to at least three different lawyers before deciding to proceed. By contacting Brain Injury Group, just one call or email will provide them with details of three specialists, reducing some of the burden of researching firms at a time when there may be massive changes and stresses in their lives as they adapt to life after brain injury.

Julie McCarthy, training and membership manager

At the same time, we can connect them with organisations who can provide a free welfare benefits check-up or advise them on any employment issues that may arise, talk to them about continuing healthcare funding, or introduce them to a charity who can offer emotional support and may also be able to offer a small grant to assist with travel, accommodation, therapies, or the purchase of specialist equipment.  

This service is provided free by Brain Injury Group and all our members will offer free initial advice to the general public who approach them via Brain Injury Group.

What does the future hold for Brain Injury Group?

During the pandemic we moved all our training online which has proven very popular, and whilst our webinars will continue, we really hope people will be happy to return to meeting in-person at events – we have held a couple of events recently which were very well received and attended, so we are hopeful.  

We’re keen to continue to develop our membership further and introduce a training programme specifically aimed at case managers, which will run alongside our main training for catastrophic injury lawyers.  

By forging closer links with case managers, rehabilitation providers, barristers, and lawyers, we hope we can extend our reach to help even more people who have sustained a brain injury, including those who do not have a personal injury claim.

For further information on how Brain Injury Group can help or to find details of membership and our training, visit our website www.braininjurygroup.co.uk

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Legal

DoLS cases rise, as completion rate improves

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DoLS applications have risen year-on-year.

The yearly number of applications to legally deprive a person of their liberty (DoLS), where they lack the mental capacity to consent to their care or treatment, has risen slightly in England, new figures show.

In 2020/21, there were 256,610 Deprivation of Liberty Safeguards (DoLS) applications – up three per cent on the previous year, versus an average growth rate of 14 per cent between 2014/15 and 2019/20.

DoLS is a legal procedure when an adult who lacks mental capacity to consent to their care or treatment is deprived of their liberty in a care home or hospital, in order to keep them safe from harm.

In England, all deprivations of liberty that take place in a care home or hospital must be independently assessed and authorised by a local authority to ensure they are in the person’s best interests.

The reported number of cases that were not completed as at year end in April 2021 was an estimated 119,740, around 10,000 fewer than the end of the previous year.

More than half (57 per cent) of completed applications in 2020-21 were not granted was 57 per cent. The main reason was given as ‘change in circumstances’, at 60 per cent of all not granted cases.

The proportion of standard applications completed within the statutory timeframe of 21 days was 24% in 2020-21, the same as the previous year. The average length of time for all completed applications was 148 days.

During the coronavirus (COVID 19) pandemic period, some aspects of the DoLS process have changed due to new Government guidance.

This includes greater use of remote assessments and shortened forms.

Read the full report here.

 

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Insight

‘This is an exciting time in the future of clinical rehab’

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For seriously injured military personnel, the options around rehabilitation are increasing further with plans for a new National Rehabilitation Centre. Matthew Tomlinson and Rachel Seddon, from the military team at Slater & Gordon, discuss the importance of access to specialist support

For the majority of readers, initial treatment for their serious injury or illness will likely come from our exceptional NHS’ regional acute hospitals. When clinical rehabilitation, to assist those seriously injured is required, it is widely recognised that timely and tailored support is necessary to maximise the potential to return to a quality of life, and minimise further problems down the line. This is significant in relation to an individuals’ physical and mental health. 

Getting people back to a meaningful life and capability following serious injury is a major policy area in Government. Return to work rates for people experiencing serious injury and trauma in England are below rates achieved in other European countries as well as rates achieved in the Armed Forces.

For seriously injured military personnel, the Defence and National Rehabilitation Centre (or DNRC) in Loughborough will already be a familiar part of Defence Medical Services, which comprises, in addition to the national Defence Centre, Regional Rehabilitation Units (RRUs), Units embedded within NHS Trusts, the Royal Centre for Defence Medicine and mental health services such as the DCMH (Departments of Community Mental Health) network. 

The Defence Centre, or DMRC/Stanford Hall as it is known, is the state of art successor to the Ministry of Defence’s former Headley Court facility in Surrey. The facility, which is run by a Commanding Officer alongside uniformed staff and civilians employed by MoD, opened in 2018 and continues to treat and rehabilitate seriously injured members of the armed forces including those with serious neurological and spinal cord injuries.  

In addition, plans to develop a ‘National Rehabilitation Centre’ (NRC) on the Stanford Estate (next to the Defence Centre) are gaining momentum and will be a very welcome initiative bringing world-class clinical rehabilitation for civilian NHS patients, as well as providing a national hub for training, research and development.

Recent reports suggest that, all being well, the green-light should be given later this year for construction of this new facility, with a target for treating patients by 2024. This is an exciting time in the future of clinical rehabilitation and the NRC will extend the success of acute services and established major trauma centres by providing a national centre of excellence in both patient care and innovation.   

The recent and ongoing lessons of COVID-19 are showing the real value of excellent clinical rehabilitation in making a meaningful difference to an individual’s recovery and capability. For example, a specialist three-step rehabilitation programme developed at DMRC has been credited with saving the careers of military personnel with “long- Covid” (shortness of breath, fatigue, low mood and “brain fog”). The BBC recently reported that nearly all of the 150 patients that took part in the programme were able to return to work within three months. 

The plans for the NRC appear to offer a unique opportunity to drive new rehabilitation products and technologies and improve accessible state of the art rehabilitation. The NRC would provide patient care focused primarily on treating patients within the NHS East Midlands region with the potential to treat patients referred from elsewhere in the country similar to the Defence Rehabilitation Model.  

Already, the Defence establishment is acquiring new knowledge through, for example, Computer Aided Rehabilitation Environment and the cohort of patients treated at both the NRC and the Defence facilities must widen the opportunities for clinical research. The NRC facility itself aims to be transformative, leading in the testing and development of future treatments and techniques and the positives that can be derived from the Defence Rehabilitation Model and its collaboration with Defence Medical Services looks likely to bring about meaningful changes to injured individuals’ pathways. 

Good rehab after serious injury is often described as ‘like a relay race’. Taking for example, the experience of our client, Soldier X. X was paralysed from the mid-chest down and would be graded T4 complete ASIA A paraplegic. He suffers from residual neuropathic pain, increased tone, spasms, impaired sensation and loss of power below the mid-chest and loss of visceral function. He has to self-catheterise and manually evacuate the bowels, and within a few years of injury, developed a syrinx, which is, along with syringomyelia, likely to further progress. 

In the immediate aftermath of the injury, he went through numerous intensive and emotionally difficult stages of rehabilitation, including treatment at Stoke Mandeville NSIC. 

During X’s Naval Service Recovery Pathway with Hasler Company, and numerous inpatient stays at DMRC Stanford Hall, he has been able to access tailored rehabilitation which has included hydrotherapy, 1:1 specialist physiotherapy and psychotherapy, and he has had the opportunity to complete successful trials of the ReWalk exoskeleton.  

DMRC Stanford Hall has the feel of a military establishment in one sense and of somewhere very conductive to rehabilitation in a relaxed and personal manner. It has buildings and spaces specially designed to aid the recovery process including gyms, a range of swimming and hydrotherapy pools, a gait lab and “all the elements essential for its clinical purpose”, that is, to rehabilitate the most seriously injured members of the Armed Forces and also, importantly, return those who have been injured in the course of training back to work.

He is making good progress with his physical rehabilitation but acknowledges his ongoing challenges in terms of bowel and bladder care, sexual health and fertility, pressure sores, syrinx management, and mental health and so continuity and quality of care remains vital both now and beyond his medical discharge. In due course, Soldier X will likely engage with the Recovery Career Services which was launched as part of the Defence Recovery Capability back in 2013 with the mission of getting injured and sick personnel competing in the civilian employment market. 

What the current Defence Rehabilitation Model seems to do very well is integrate all aspects of recovery including medical care, welfare, housing, education, reskilling, work placements, employment issues and opportunities. Whilst this remains an ideal care model and one that is decades ahead due to the combined efforts of the Services and the Service charities responding to carefully tailored individual recovery plans setting out a recovery pathway, if the NRC development plans can keep momentum, it presents a very exciting, and similarly patient-led opportunity to build the right environment for successful rehabilitation.

  • For more information about Slater & Gordon’s specialist work with the military, visit here

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