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MS update

A round up of the latest developments in Multiple Sclerosis (MS) research.

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MS risk higher for people living in urban areas, new research reveals

In Italy, a study has found that air pollution could be a risk factor for the development of MS.

The research, which was presented at the European Academy of Neurology (EAN) Virtual Congress, detected a reduced risk for MS in individuals residing in rural areas that have lower levels of air pollutants known as particulate matter (PM). It showed that the MS risk, adjusted for urbanisation and deprivation, was 29% higher among those residing in more urbanised areas.

The study sample included over 900 MS patients within the region, and MS rates were found to have risen 10-fold in the past 50 years, from 16 cases per 100,000 inhabitants in 1974 to almost 170 cases per 100,000 people today. Whilst the huge increase can partly be explained by increased survival for MS patients, this sharp increase could also be explained by greater exposure to risk factors.

The analysis was conducted in the winter, as this is the season with the highest pollutant concentrations, in the north-western Italian region of Lombardy, home to over 547,000 people.

Commenting on the findings at the EAN Virtual Congress, lead researcher Professor Roberto Bergamaschi explained, “It is well recognised that immune diseases such as MS are associated with multiple factors, both genetic and environmental.

“Some environmental factors, such as vitamin D levels and smoking habits, have been extensively studied, yet few studies have focused on air pollutants. We believe that air pollution interacts through several mechanisms in the development of MS and the results of this study strengthen that hypothesis.”

The term particulate matter (PM) is used to describe a mixture of solid particles and droplets in the air and is divided into two categories. PM10 includes particles with a diameter of 10 micrometres of smaller and PM2.5 which have a diameter of 2.5 micrometres or smaller.

Both PM10 and PM2.5 are major pollutants and are known to be linked to various health conditions, such as heart and lung disease, cancer, and respiratory issues. According to the World Health Organisation, 4.2 million deaths occur every year because of exposure to ambient (outdoor) air pollution.

Three different areas were compared within the study region based on their levels of urbanisation, of which two areas were found to be above the European Commission threshold of air pollution.

Professor Bergamaschi added: “In the higher risk areas, we are now carrying out specific analytical studies to examine multiple environmental factors possibly related to the heterogeneous distribution of MS risk.”

The number of people living with MS around the world is growing, with more than 700,000 sufferers across Europe alone. The vast majority (85%) of patients present with relapsing remitting MS, characterised by unpredictable, self-limited episodes of the central nervous system. Whilst MS can be diagnosed at any age, it frequently occurs between the ages of 20-40 and is more frequent in women. Symptoms can change in severity daily and include fatigue, walking difficulty, numbness, pain and muscle spasms.

Novartis builds case for MS drug ofatumumab as FDA decision looms

Swiss drug maker Novartis has reported new data with its MS drug ofatumumab showing that it can suppress disease activity for up to two years, as it waits for an FDA decision on the drug in June.

New results from the firm’s clinical trials programme for ofatumumab (OMB157) showed that 47% of patients with relapsing MS had no evidence of disease activity (NEDA) in the first year after treatment, rising to almost 88% in the second year.

Ofatumumab – a CD20-targeting antibody – is already used as an intravenous treatment for chronic lymphocytic leukaemia (CLL) under the Arzerra brand name but has seen its use in that indication lowered due to increased competition.

Novartis believes the subcutaneous version of the drug can make sales of over $1billion per year as an MS therapy, and challenge other new therapies like Roche’s fast-growing Ocrevus (ocrelizumab), which also targets CD20 and brought in CHF 3.7 billion ($3.8 billion) in only its second full year on the market.

If approved, ofatumumab would become the first B-cell-targeting therapy for relapsing forms of MS that can be self-administered by patients at home once a month. A verdict is also due from the European Medicines Agency (EMA) in the first half of 2021.

Earlier results from a pair of phase 3 trials – ASCLEPIOS 1 and 2 – showed that the antibody was more effective at cutting relapses than Sanofi’s once-daily oral MS drug Aubagio (teriflunomide), reducing the rate by 50.5% and 58.5% respectively in the two studies.

The new findings were presented at the virtual European Academy of Neurology (EAN) congress, and showed that Aubagio was also less effective at banishing disease activity. In the first year 34.5% of patients on Sanofi’s drug achieved NEDA, rising to 48.2% in year two.

ASCLEPIOS clinical investigator Prof Ludwig Kappos of University Hospital Basel said: “Achieving no evidence of disease activity is widely recognised as an important treatment goal for MS therapies.”

If approved, ofatumumab won’t have the same breadth of approved indications as Ocrevus, as Roche’s drug can be used in both relapsing and primary progressive forms of MS.

There’s also a big difference between the two drugs when it comes to their dosing. Patients will have to decide whether they prefer to self-inject ofatumumab once a month or visit a clinic for an intravenous infusion of Ocrevus every six months.

The Covid-19 pandemic could be a lift for Novartis on the dosing issue, given the reduced access to healthcare services, although lockdowns are now beginning to be lifted.

Novartis Pharma president Marie-France Tschudin said last month that “now more than ever, bringing a B-cell therapy that’s highly efficacious and administered at home is highly attractive.”

“Our goal is that when patients come back, we’ll make it easy for them to start on ofatumumab,” she added.

Novartis acquired the drug from GlaxoSmithKline and Genmab in 2015 in a $1 billion deal.

Higher blood NfL levels indicate worse disability over time in MS, study suggests

A large population study in Sweden has suggested that higher blood levels of the neurofilament light chain (NfL) protein at diagnosis are predictive of worse disability over time in people with multiple sclerosis.

The study, “Plasma neurofilament light levels are associated with the risk of disability in multiple sclerosis,” was published in the journal Neurology.

NfL levels are commonly used as a marker for nervous system injury, with NfL protein released when neurons become damaged.

Previous research has suggested NfL as a prognostic biomarker in MS, however, most of these studies measured NfL levels in cerebrospinal fluid (CSF), the fluid that surrounds the brain and spinal cord, which is not feasible as a routine clinical test due to its invasive nature.

Other studies have shown that NfL levels in blood are closely related to levels in CSF, raising the possibility that blood NfL levels could have prognostic value in MS. However, whether these levels can predict long-term outcomes in MS has not been extensively evaluated.

“In a disease like MS that is so unpredictable and varies so much from one person to the next, having a non-invasive blood test like this could be very valuable, especially since treatments are most effective in the earliest stages of the disease,” Ali Manouchehrinia, PhD, of the Karolinska Institutet, Sweden, and a study co-author, said.

To address blood NfL as potential marker of likely disability worsening over time (a prognostic marker), researchers measured blood NfL levels in 4,385 people with MS, including 3,664 with relapsing-remitting MS (RRMS), 511 with secondary progressive MS (SPMS), and 129 with primary progressive MS (PPMS). The remaining 81 individuals did not have their MS type recorded in the data analysed.

For comparison, NfL levels were measured in a control group of 1,026 non-MS people of similar age and sex to the MS group.

Results showed that blood NfL levels varied significantly with age in all groups. After adjusting for this, NfL levels were significantly higher in all MS groups than in controls — the median NfL levels were 8.5 picograms (pg)/mL in controls, and 17.1 pg/mL in RRMS patients, 18.4 pg/mL in those with SPMS, and 14.7 pg/mL in PPMS patients.

Researchers then calculated whether higher NfL levels were predictive of worsening disability, as assessed by reaching various benchmarks on the Expanded Disability Status Scale (EDSS) during a median of five years of follow-up.

High NfL blood levels were defined based on the values measured in controls, and multiple cut-off values were also assessed. The statistical models used for these calculations were adjusted taking into account other relevant factors, including sex, age, disease duration, and MS treatment.

Overall, high NfL levels were significantly predictive of sustained EDSS worsening (greater disability). Depending on the cut-off used, the risk of disability worsening rose by 40% to 65% in people with high blood NfL levels, compared to those with lower levels.

High NfL levels were also significantly associated with a risk of reaching an EDSS score of 3.0, indicating moderate disability without walking impairment. Similar results were found for reaching an EDSS score of 4.0, indicating significant disability with mild walking impairment.

At some cut-offs, high NfL was significantly associated with a risk of reaching an EDSS score of 6.o (corresponding to needing an aid to walk 100 meters, about 330 feet). As findings weren’t entirely significant, a definitive conclusion cannot be drawn from this data and future studies will be needed to help clarify whether blood NfL levels can predict more severe disability, the researchers noted.

Similarly, high NfL levels were significantly predictive of progression from RRMS to SPMS at some cut-offs, but not at others, making it difficult to draw reliable conclusions and again highlighting a need for further research.

Taken together, the “findings suggest that [blood] NfL measurement can usefully provide additional predictive power in the form of an easily accessible and easy-to-measure biomarker for monitoring of disease activity and potentially treatment response in MS,” researchers wrote.

Nonetheless, “more research is needed before a blood test could be used routinely in the clinical setting, but our results are encouraging,” Manouchehrinia concluded.

Preliminary research on Covid-19 in people with MS offers some reassurance

One area that has caused concern most recently for those in the MS community is the impact of Covid-19. However, preliminary results from Italy has shown that people with MS who contracted the virus did no worse than the general population.

Researchers in the country have been collecting data to understand the relationship between MS and Covid-19, whether having the condition increases the risk of a more severe impact of the virus, and whether taking disease modifying drugs may add any extra risk.

The Italian Multiple Sclerosis Society (AISM), the Italian Multiple Sclerosis Foundation (FISM), and the Multiple Sclerosis Study Group of the Italian Neurological Society set up an online platform to record and collect data about those with MS in Italy who have been diagnosed with Covid-19 or have developed symptoms (suspected Covid-19). MS neurologists across Italy were asked to input data and share patient outcomes.

Early results from the data collected so far have now been published. Preliminary data includes 232 people with MS, 57 of which have tested positive for Covid-19 and 175 who have suspected Covid-19. Of the 232 people studied, 211 were taking a disease modifying drug.

The data recorded the severity of Covid-19 in these 232 people:

  • 223 (96%) had a mild infection
  • 4 (2%) had a severe infection
  • 6 (3%) had a critical infection

Of those who were critical, one person recovered, and five died. The people who died tended to be older (50+) and had other health conditions.

It’s too early to say from this data whether DMDs make a difference to Covid-19 recovery, but it does not suggest that the current DMD advice should be changed.

Although this research is preliminary and the numbers are fairly small, these results are reassuring for people with MS, suggesting that having MS doesn’t increase your likelihood of a more severe Covid-19 infection and the majority are likely to have a mild infection, the same as the general population.

Evobrutinib lowers MS relapse rates over 2 years of use, trial data shows

Trial data has shown that the investigational oral medication evobrutinib leads to a sustained reduction in relapse rates in people with relapsing MS.

These findings were presented in a poster at the 2020 congress of the European Academy of Neurology (EAN), which was held virtually due to the COVID-19 pandemic.

The study, “Efficacy and Safety of the Bruton’s Tyrosine Kinase Inhibitor (BTKI) Evobrutinib in Relapsing Multiple Sclerosis Over 108 weeks: Open-label Extension to a Phase II Study,” was sponsored by Merck KGaA, the company developing evobrutinib.

Evobrutinib works by blocking the activity of Bruton’s tyrosine kinase (BTK), a protein that is important for the activation of certain types of immune cells — like B-cells — that drive inflammation which damages the nervous system in MS.

Its efficacy and safety were evaluated in a Phase 2 clinical trial (NCT02975349) that enrolled 267 people with relapsing MS, which includes relapsing-remitting MS (RRMS) and active secondary progressive MS (SPMS).

In the initial trial, which lasted 48 weeks, participants were randomly assigned to one of five groups: three groups were given evobrutinib at different doses (25 mg once daily, 75 mg once daily, or 75 mg twice daily); a fourth was given a placebo; and the fifth was given Tecfidera (dimethyl fumarate), an approved oral therapy by Biogen.

Results from this part of the trial showed that evobrutinib, at 75 mg twice daily (highest dose tested), significantly reduced the annualised relapse rate compared to placebo – 0.11 vs. 0.37 relapses/year – with 79% of participants on this dose group remaining relapse-free after 48 weeks.

Participants were then invited to enrol in an open-label extension study (OLE), where all received the active treatment at the dose determined to be the most effective and safe: in this case, evobrutinib at 75 mg twice daily.

Data presented at EAN comes from an analysis of 213 patients who completed at least 60 weeks of treatment in the OLE study.

For those initially randomised to evobrutinib at 75 mg twice daily, this represents a total of 108 weeks (just over two years) of treatment. In these 44 patients, the annualised relapse rate observed after 48 weeks (0.11 relapses/year) was consistent with that seen at 108 weeks (0.12 relapses/year).

Luciano Rossetti, head of global research and development for EMD Serono, said: ““These data demonstrate evobrutinib has a sustained high impact on annualised relapse rate over 108 weeks.”

Notably, the relapse rate for this highest dose of evobrutinib was lower than for all other tested doses of evobrutinib, suggesting that this dosing schedule is best for preventing relapses.

Mathematical modelling suggested that the efficacy of this highest dose is likely attributable to the percentage of BTK molecules that are physically inhibited by evobrutinib, a process referred to as “BTK occupancy.”

“The largest and most sustained reduction in [annualized relapse rate] was achieved when BTK occupancy was [greater than] 95%, observed in nearly all [98%] patients receiving [75 mg evobrutinib twice daily],” the researchers wrote.

No new safety concerns were observed in the OLE study. The most common side effect of evobrutinib’s use was nasopharyngitis (more commonly known as a cold).

In the initial trial, some participants experienced an increase in blood markers of liver damage, but these increases were only observed in the main study and were not found in the OLE.

“We are encouraged by evobrutinib’s breadth of consistent safety data, including no increase of serious infections in more than 1,200 patients [treated across all clinical studies of evobrutinib in MS and other conditions] up to two years,” Rossetti said.

Xavier Montalban, MD, PhD, with Vall d’Hebron University Hospital in Spain, and a trial investigator added: “The 108-week efficacy and safety data for evobrutinib through the double-blind and the OLE period are very robust.

“This, combined with the high selectivity of evobrutinib, suggests that evobrutinib may offer a promising approach to MS treatment.”

Evobrutinib is being further evaluated in two Phase 3 clinical trials, EVOLUTION RMS 1 (NCT04338022) and EVOLUTION RMS 2 (NCT04338061).

More than 1,800 people with relapsing MS will be enrolled and randomised to receive either evobrutinib or Sanofi‘s Aubagio (teriflunomide), or a placebo.

This reflects a change to the trials’ original protocol, which called for evobrutinib to be compared with Biogen’s Avonex (interferon beta-1a).

These trials, which are not yet recruiting participants, are expected to conclude in 2023.

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Brain injury case study: Simon’s story

Simon’s story demonstrates that consistent support from a small, specialist team can maximize quality of life and reduce barriers to discharge home.

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In August 2019, Simon was admitted to the Coach House in Northampton, a specialist residential care home for adults with acquired brain injury. He was the first service user in a brand new service from experienced care provider, Richardson Care.

He had sustained a hypoxic brain injury in 2015 following cardiac arrest, and had resided in a number of care environments following his discharge from acute rehabilitation.

He was referred to Richardson Care due to an increase in unsettled and challenging behaviours and as his current placement was no longer best-placed to meet his needs.

Simon had been increasingly isolating himself from the rest of the care home and would only engage in very limited activity with 1:1 support. He would frequently make complaints about his placement.

Goal for Placement

On admission to the Coach House, the overarching goal was to enable a safe discharge home for Simon. To enable this, further exposure to more independence would be required to appropriately risk assess and inform future care provision once at home.

This would provide information as to whether his previous environmental restrictions within care homes were preventing his progression or whether his needs were more enduring.

Intervention and Support

Following an initial assessment of his needs it was evident that Simon struggled with flexibility of thinking and that unsettled behaviours would present when his expectations were not met.  This could then manifest itself in paranoid behaviours, which he would then perseverate and allow to dictate his day.

Simon was provided with a structured programme to assist him in managing his expectations: a programme which he devised with the support of his Keyworker, Gareth.

By adopting a person-centred approach to the formulation of his programme, Simon felt in control of his day and less reliant on others to initiate activity for him. Simon was able to manage his own expectations of how his day would look.

He became increasingly able to manage deviations from this if he was informed of the purpose of these changes. Whilst Simon still presented with some agitation on such occasions, the structure and the relationship he had built with his key staff enabled him to become more receptive to feedback.

Simon became more flexible in other ways and was more willing to take on new challenges. His initial engagement in food preparation was short lived, but his willingness to at least ‘have a go’ was a marked difference from his previous compliance. He started to eat different meals at lunch time and take interest in his nutritional intake.

He joined the gym and set goals around his personal fitness. Whilst Simon was still largely dependent on others for some activities of daily living, he had developed new interests which significantly and positively impacted on his quality of life and mood.

Whilst Simon remained resistive to face-to-face therapy, he benefitted from oversight from the clinical team who would assess and inform future interventions and support. Simon gained some insight into the limitations imposed on him by his brain injury and focused on realistic goals, rather than shutting down at the suggestion of anything new. In brief, Simon started to enjoy his life.

Discharge Planning

Simon’s placement, in part, was to assess whether plans for future independent living were a viable option. During the year of his placement, on-going risk assessments were completed and observations made to inform future care needs on discharge home.

Close liaison with his case manager enabled remote planning during the Covid-19 pandemic, using technology to ensure that Simon could make decisions and choices regarding his future adaptations and environment. An occupational therapist from the team assessed Simon’s future home and made recommendations.

The team at Richardson Care also made recommendations on how a care package should look and Simon was involved in drawing up a person specification for the role of his personal assistant. In August 2020, almost a year since his admission, Simon discharged to his own home.

What did Simon say about the Coach House?

He felt that the staff treated him with dignity and respect and listened to him.

Simon said: “I like the room at the Coach House, I can’t complain.”

“I was only disappointed once during my stay.”

What did his case manager say about the Coach House?

Five weeks after admission:

“It was really lovely to visit yesterday and to see how well Simon is doing at the Coach House. It was particularly encouraging to hear that he is engaging with eating at the Coach House and not spending fortunes on going to a restaurant every day anymore! It was genuinely heart-warming to see the enthusiasm and satisfaction on his face, describing the steak lunch he had just bought, helped prepare and eaten.

Simon seems a great deal more relaxed in his new surroundings and it is abundantly clear that he has a great team around him, who understand his needs and are pro-active with him. He has not experienced that before, so it is all very pleasing! Many thanks.

After Simon’s discharge

“Could not have managed yesterday (or the past year!) without yours and especially Gareth’s support. He was an absolute legend yesterday – he really is a credit to himself and the Coach House. He did not relent in his efforts to help Simon settle in. He even put a ton of DVDs away on shelves after driving down and unloading the van in that heat. The man is a tank!

“I will make sure our paths cross again the next time I have a suitable candidate – I’ve really enjoyed working with you and your team too. You helped transform Simon’s life!

Chris Dindar RGN, Associate Case Manager at Brain Injury Services Ltd

Richardson Care is an independent family business and has a proven track record over more than 30 years. It has six specialist residential care homes in Northampton, three of which provide care for adults with acquired brain injury. The remaining specialise in supporting adults with learning disabilities. Its focus is on providing an inclusive family environment in which service users develop daily living skills, increasing their independence and well-being.

www.richardsoncares.co.uk.

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Expanding the horizon of neuro patients

With AlterG Anti-Gravity Treadmills.

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A wide range of patients are now benefiting from the use of AlterG Anti-Gravity Treadmills throughout clinics across the UK.

Patients with a wide range of neurological conditions are gaining confidence within a fall-safe environment which allows for high intensity repetitions along with increasing motor learning early on in the rehabilitation stage.

Originally designed for NASA, the AlterG uses patented Differential Air Pressure Technology to unweight patients from 100% down to 20% of their bodyweight in precise 1% increments.

AlterG started in Professional Sport assisting with rehabilitation from ACL and Ankle injuries, moving onto MSK Physiotherapy Clinics. However multiple research papers and case studies have now been carried out to show the benefits of use with multiple neurological conditions including Stroke, Multiple Sclerosis, Parkinson’s, Functional neurological disorder, Brain Injuries & Incomplete Spinal Cord Injuries.

Developing the technology further, along with a precise partial weight bearing environment, AlterG has liaised with multiple Neurological Physiotherapists and Surgeons and added new features to enhance the experience on the machine and enable patients to gain as much as possible from each session.

The machines are now available with basic Gait Analytics (Stance Time, Step Length and Weight Bearing Symmetries and Cadence), Pain scales, pre- programmed exercises and camera for live video monitoring allowing patients to see their feet whilst walking.

Multiple case studies have been carried out, one of which is Brainstem Cerebrovascular Accidents (CVA) or Strokes. In conjunction with AlterG, Kate Haugen from Great Moves Physical Therapy (Colorado, USA) wrote a great case study with regards to a 42-year-old runner and university tennis coach. The individual presented two strokes resulting in right sided weakness and significant balance deficits from the first stroke and almost complete paralysis on his left side for 8 days following a second CVA.

“Weightbearing exercises caused medial tibiofemoral joint line pain and swelling. The patient was unsuccessful with a stationary bike and elliptical trainer. AlterG allowed for more controlled loading progression for returning to Full Weight Bearing.”

After multiple weeks of rehabilitation, the patient can now step over objects and change direction quickly. In addition, there are no limitations with the distance the patient is able to walk, and they are not limited by fatigue.

Along with a range of case studies, various research papers are available online showing how the treadmill can be an effective intervention for those who have experienced a stroke or other neurological conditions.

“The AlterG enables Neuro patients to experience what they thought they could never do again – be it walking, jogging or running. We have had some very encouraging results – even with clients who had trialled some of others rehabilitation technologies, including a conventional partial-weightbearing treadmill. Any neuro patient who can achieve an assisted step to transfer into the AlterG can benefit.

The AlterG allows a physio to challenge neurological patients in a safe manner and in a cost-efficient manner without the need for an additional therapist or assistant”.
– Jon Graham, Physiofunction.

Trevor Donald, Managing Director of SportsMed Products Ltd (the UK distributor) stated “it is great to see research coming through about the huge benefits the AlterG can have for individuals suffering with neurological conditions. The patient stories emerging from our customers at neurological physiotherapy clinics has been incredible”

Not only does the AlterG aid walking but it can be used simply in a partial weight bearing environment to carry out exercises such as single hand throwing and catching, squats and hopping.

If you would like further information on the papers and case studies carried out along with clinical protocols please feel free to contact AlterG’s UK distributor, SportsMed Products Ltd.

https://sports-medical.co.uk/case-studies/

sales@sports-medical.co.uk

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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.

 

 

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