NR News

Test can detect Parkinson’s through skin swabs

A new method to detect Parkinson’s disease uses skin swabs to analyse sebum has been developed, in a test which can take as little as three minutes.

A new study uses mass spectrometry to analyse sebum, and found that lipids of high molecular weight that are substantially more active in people living with Parkinson’s.

The breakthrough stems from the observation of Joy Milne, who discovered that she can distinguish Parkinson’s in individuals from a distinct body odour before clinical symptoms occur.

Joy first detected the odour on her husband Les, who was diagnosed with Parkinson’s at the age of 45. She only linked the odour to the disease after Les was diagnosed and they met people at a Parkinson’s UK support group who had the same distinctive smell.
Joy has hereditary hyperosmia – a heightened sensitivity to smells – which has been exploited to find that Parkinson’s has a distinct odour which is strongest where sebum collects on patient’s backs and is less often washed away.

Building on this, researchers from The University of Manchester used cotton swabs to sample people and identify the compounds present with mass spectrometry. The method developed involves paper spray ionisation mass spectrometry combined with ion mobility separation and can be performed in as little as three minutes from swab to results.

Professor Perdita Barran, who led the research, said: “We are tremendously excited by these results which take us closer to making a diagnostic test for Parkinson’s disease that could be used in clinic.”

Altered sebum production is a well-recognised feature of Parkinson’s. The new sampling procedure is simple and non-invasive; sebum is collected in clinics from the upper back of patients and posted to the lab.

Describing the new technique, Dr Depanjan Sarkar said: “The sebum is transferred to filter paper from sampling swab, and we then cut this to a triangle, add a drop of solvent, apply a voltage and this transfers compounds from the sebum into the mass spectrometer.

"When we do this, we find more than 4,000 unique compounds of which 500 are different between people with PD compared to the control participants."

“When we do this, we find more than 4,000 unique compounds of which 500 are different between people with PD compared to the control participants.”

The Manchester team now see this as a major step forward towards a clinical method for confirmatory diagnosis of Parkinson’s, for which to date there is no diagnostic test based on biomarkers.

Professor Monty Silverdale, clinical lead on this study, said: “This test has the potential to massively improve the diagnosis and management of people with Parkinson’s disease.”

The current and future focus is to translate these findings into a test of clinical utility. This new work also opens the door to possibly diagnosing other diseases through non-invasive sebum analysis and the team, along with the University of Manchester, have launched a spin out company Sebomix Ltd. to develop this further. The charities Parkinson’s UK and the Michael J. Fox Foundation as well as the Royal Society funded the research.

Could anti-sickness drug treat dementia and Parkinson’s hallucinations?

A study is investigating whether a readily-available anti-sickness drug could treat hallucinations related to dementia or Parkinson’s disease.

The Trial of Ondansetron as a Parkinson’s Hallucinations Treatment, or TOP HAT study, will evaluate whether ondansetron, an anti-sickness drug used in the NHS for cancer patients, could also be used for treating hallucinations in people with Lewy body dementia or Parkinson’s disease.

Hallucinations affect up to 75 per cent of people with Parkinson’s and Lewy body dementia at some point during their condition. They can be extremely distressing and sometimes result in a person becoming confused, frightened, or in need of support.

Current hallucination medications also negatively affect other Parkinson’s and Lewy body dementia symptoms, so research into new treatments is vital.

Ondansetron has previously shown promise for treating hallucinations and with the drug already being used in the NHS, dementia researchers are looking to explore its full potential.

Chief investigator Professor Suzanne Reeves, of UCL Psychiatry, said: “Current drug treatment options for visual hallucinations in people with Parkinson’s disease and Lewy body dementia are limited and can cause significant side effects which worsen some people’s symptoms.

“It is really important that we identify and test alternative treatments, and given that ondansetron is already used in the NHS, it’s possible we could have an effective treatment available in a fraction of the usual time.”

Dr Beckie Port, head of research at Parkinson’s UK, added: “While most people will be familiar with the motor symptoms of Parkinson’s, like tremor and slowness, non-motor symptoms like pain, sleep problems and hallucinations are very common.

“Hallucinations can have a huge impact on quality of life and can be incredibly distressing for the individual and their loved ones, so this research is a really positive step forward to finding more effective treatments.”
TOP HAT is a rapidly-expanding phase II clinical trial funded by Parkinson’s UK. There are approximately 30 study sites open in England, Scotland and Wales, with many more due to open soon to enable the research team to recruit 216 study participants.

If chosen for the study, participants will be randomly allocated to receive ondansetron, the study drug, or the placebo (a dummy drug). TOP HAT is a double-blind study, which means neither participants or the clinical team prescribing the study drug and placebo will know which treatment is being taken.

Participants will be able to take all of the medication for this study at home, as the study drug or placebo will be delivered directly to their address with clear instructions on how to take them.

The study lasts for approximately 24 weeks. Participants will take the study drug or placebo tablets for 12 weeks and there will be further follow-ups for 12 weeks after they finish taking the medication.
During the study, people will be asked to complete a range of study assessments, including questions about hallucinations and any other symptoms they are experiencing, and how they impact on quality of life.

Cost of living crisis:

“Understanding brain injury in homeless people
could help us do much more”

More than 66,000 people in the UK will be pushed into homelessness by 2024. NR Times reports on the hidden consequences of brain injury in society’s most vulnerable people.

As councils warn of a “tidal wave” of need caused by benefits freezes, soaring food and energy bills, thousands of people will be left on the brink of poverty.
According to the charity Crisis, the cost of living crisis is likely to push 1.7 million UK households into homelessness this winter, putting them at high risk of neurological disease and cognitive dysfunction.
Traumatic brain injury could be either a cause or a consequence of homelessness.

Researchers from the British Columbia Mental Health and Substance Use Services have found that half of all homeless and marginally housed individuals may have suffered a traumatic brain injury at some point in their life, two to four times the rate for the population as a whole.

“It is a complicated picture,” says Professor Tom McMillan from the University of Glasgow.
“While some may have a history of brain injury before they become homeless, others may be on the trajectory towards homelessness for a range of different reasons such as mental health problems and drug and alcohol abuse, increasing the risk of being assaulted and suffering a brain injury.”

Dr Lucia Li, NIHR clinical lecturer in neurology at Imperial College London says this can turn into a vicious cycle where homelessness increases the risk of TBI and TBI increases the risk of ongoing homelessness.
“For this group of people, the risk of getting caught up in violence is very high,” Li explains.

“They are extremely vulnerable to many negative health and social consequences including falls, sexual violence, infections as well as decline in existing medical conditions.

“This isn’t only because of their lack of safe home but also the other factors which led to that situation such as poor mental health or drug and alcohol use.”

Brain injuries in homeless people have wide-ranging, long-term implications and yet the opportunity to help them once they are within the NHS is missed.
“Health professionals would tend to deal with the issues that are most obvious and pressing at the time and they are not going too much further into the background” says Professor McMillan.

Invisible impairments make it almost impossible for these individuals to access services and benefit from them, says Dr Mark Holloway, senior brain injury case manager at Head First.

“If we think about the interrelationships between cognitive and executive difficulties, cognitive communication disorders, emotional and behavioural challenges, substance use, prior experience of/lack of experience of service use and, potentially, feelings of low self-efficacy, then [the lack of care] is perhaps unsurprising.

“In the absence of insight into your own needs in a system that fails to provide neuro-rehabilitation and lacks the knowledge of your needs, it is easy to conceptualise how people fail to engage successfully with the services that are available.

“But rather than see this as a personal falling, I question how much people are corralled into this position, squeezed into that liminal space at the edge of the world and society where even the very services that are supposed to pick up and support those with the fewest resources are in fact a barrier to life.

“I think it is less that these are ‘hard-to-reach service users’ and more that the services are hard to reach.”
Adequate care for homeless brain injured people requires an all-encompassing approach to assess their needs and help them move forward.

“Homelessness is the epitome of complex medical and social problems that can’t be tackled by one type of intervention or another,” says Professor Andrew Worthington, director and consultant in neuropsychology and rehabilitation at Headwise.

Hear from Professor Worthington below:

“Even if the brain injury was a factor in them becoming homeless, this is often not the most pressing problem that these people have. There are multiple complex needs these people have which means that in order to help them we need a joined-up service provision.

“Currently, there are lots of barriers homeless people face in getting service provision – structural ones like not having an address or barriers related to a rather chaotic lifestyle and difficulty in trusting professionals.
“You have to meet people on their own territory, literally, but also, metaphorically,” Professor Worthington argues.

“These people are not necessarily going to turn up at a clinic for a set appointment. So, there has to be more of an outreach approach that involves working with people in homeless shelters and charities, rather than staying within the confines of clinics.”

A strong and adequately funded social sector is a good place to start, says Thea Arch, policy officer working on brain injury, domestic abuse and the criminal justice system at The Disabilities Trust.

“The picture is very complex. Robust care in the community programmes and accessible services, such as drop-in clinics, are helpful in treating injuries before they become worse.

“We also need to see appropriate discharge plans that involve active reaching out and persistent follow-ups because those with a brain injury find it particularly difficult to remember and attend appointments.
“In concluding our own research at The Disabilities Trust, we found that the persisting cognitive and emotional effects of the brain injury may have an impact on a person’s lifestyle. So, much more needs to be done to encourage engagement.”

Education could play an important role in understanding and minimising brain injury risks in the homeless population. However, this remains a topic very little-explored.

“It’s quite striking that it isn’t given more attention,” says Professor Worthington. “The focus has been mostly on alcohol and drug misuse, past traumas and the mental health problems, but suffering a brain injury can make dealing with those factors much more difficult. Raising awareness remains a major mission.”

But spreading awareness should go beyond medical professionals. Homeless people do not have any real understanding of the long-term impacts of head and brain injuries and therefore, establishing a history of past experiences becomes an impossible task.

“What we’ve found is that there isn’t really an awareness that having repeated head injuries might cause concussion or short periods of loss of consciousness,” says Professor McMillan of University of Glasgow.

“People who grow homeless might understand [the consequences] if they’ve had a brain injury, and they’ve been hospitalised, but when they get knocked in the head repeatedly, sometimes in the context of domestic abuse, they fail to understand the cumulative and long-term effects.”

Additionally, increasing awareness of brain injuries could play an important role in reducing fear and stigma particularly in the homeless community. Jane Jardine, information and advice officer at The Brain Charity, says there are still huge barriers for these people to overcome and more practical support is needed to make them aware of their rights, eligibility and who to contact if they need help.

“Raising awareness is vital in tackling discrimination and increasing the support available,” she adds.
“A good understanding of how brain injuries can affect these individuals is equally important for staff working within local authority housing option teams, the criminal justice system, housing associations and housing support agencies.”

In the light of a looming cost of living crisis, experts argue that support for low-income families is crucial to prevent more people going homeless.

“Once you are homeless, it’s very difficult to get back off that,” says Professor Worthington. “Homelessness itself is a risk for other health problems, so it’s much better to stop people becoming homeless than to try and deal with the problem afterwards.

“The most cost-effective way to help in the current crisis is to bolster people as much as they can financially rather than wait until they become homeless.”
The estimated 227,000 experiencing the worst forms of homelessness are heading into uncharted territory.
The Salvation Army has warned that measures need to be put in place to make sure that the cost of living crisis does not lead to a rough sleeping and homelessness crisis, but the government has not as yet confirmed additional support.

“Head injury remains a hidden disability and not a major focus for governments,” says Professor McMillan. “But although brain injuries don’t achieve the eminence and focus of other conditions, more support is needed.”

Dr Pedro Areias Grilo Appointed Clinical Head at Richardson Care

Following a restructure, Dr Pedro Areias Grilo has been appointed Clinical Head at Richardson Care. Part of the Senior Management Team, he is responsible for leading the multi-disciplinary team (MDT) and ensuring the quality of clinical care.

Pedro is a Consultant Clinical Psychologist and has been part of the MDT at Richardson Care since 2014. He has special interests in progressive and non-progressive neurological conditions and mental illness. He holds a consultant role within the NHS and he is a Visiting Lecturer at the University of East Anglia and at the Portuguese Institute of Psychology and Other Sciences.

Pedro comments: “It is my privilege to be trusted the role of Clinical Head at Richardson

Care. The organisation is growing and the future ahead is extremely positive. I am really excited about this opportunity and I look forward to being part of this journey alongside the great team and family that Richardson Care is.” Richardson Care has a portfolio of specialist residential care homes for adults with brain injury or learning disabilities in Northampton.

For more information call 01604 791266 or visit www.richardsoncares.co.uk

Countdown to the ABI Strategy - what’s next for the UK’s brain injury approach?

As the Acquired Brain Injury (ABI) Strategy is formalising, neuro-rehab organisations share the changes they’d like to see from what is hoped to be a landmark government intervention.

Last December the UK government announced plans to step up its support for people living with brain injury and level disparities in care provision through its first ABI Strategy.

The news followed an extensive campaign led by Chris Bryant MP, and a subsequent consultation process saw brain injury organisations, professionals and leaders from across the country input their ideas and concerns.
With this period now closed, the brain injury community awaits the publishing of the strategy by the Department of Health and Social Care – while it is set to be released in ‘early 2023’, no official date has been set.

In the meantime, neuro-rehab professionals have shared their views on what they hope will be included.
The strategy is much needed, with brain injury a leading cause of death and disability in the UK and an estimated 1.3 million living with an ABI. Its economic impact, meanwhile, is around £15bn per year.
While long overdue, some caution that the strategy could be “too broad”, given the range of conditions ABI covers.

“It does have the potential to make significant difference for children, young people and adults, but I have some concerns around it,” says Gerard Anderson, head of brain injury at the Child Brain Injury Trust (CBIT).

“ABI is an umbrella term for traumatic and non-traumatic brain injury, so it already includes traumatic brain injury and capsulitis hydrocephalus, brain tumour meningitis, brain infections, surgery and
many more."

“To then include degenerative, progressive, and long-term conditions will expand the remit to more conditions and groups than is manageable. This means that if [the strategy] is too broad, then it limits the impact that it can have.”

Vicki Gilman, clinical specialist neurophysiotherapist and managing director at Social Return Case Management, says that the uniqueness of the brain injuries means that a strategy that would fix every single person is elusive.

“There will inevitably be limitations, but we have to start somewhere,” she says. “We haven’t had this level of acknowledgment around brain injury before and a strategy like this has definitely been something needed for a very long time.”

Natalie Mackenzie, director and cognitive rehabilitation therapist at the Brain Injury Support Services (BIS), believes the strategy is a great starting point. “There is always going to be more that can be done, but the strategy is a good place to start,” she says. “It’s really important that people are getting the right rehab at the right time and I think the strategy should ensure that the right level of specialist support is provided at the right time to minimise delays.

“We can see big differences between the individuals who have received the right rehab support from the outset, versus those who haven’t, so offering that much-needed support earlier on should be a priority.”

Access to rehab services can have wider implications.
John Davis, a consulting principal lawyer specialising in serious injuries at Slater and Gordon law firm, underlines the fact that many brain injuries cause personality changes, behavioural changes, as well as mental health changes that affect everybody in the patient’s entire family.

“The ripple effects of a brain injury are enormous and relationship breakdown is common – not just in romantic relationships but also between parents and children,” he explains.

“If people have access to early rehabilitation the likelihood of adverse impacts upon relationships will be lessened and the effects of their behavioural problems will be mitigated.”

Research into the effects of brain injury on other family members has shown that relationships are put under enormous strain and relatives are likely to experience high levels of anxiety and depression. As head of brain injury at CBIT, Anderson believes access to mental health support is an important issue the government strategy should cover.

“We see that often children, young people and their families don’t get the right support, both physically and psychologically to understand their ABI,” he says.
“Across the UK, many families are refused access to child and adolescent mental health services, as the poor psychological health of a child is directly caused by the injury to the brain and not as a result of prolonged or poor mental health.

“If children are not given the right rehabilitation they will experience long-term impacts as adults. For effective rehabilitation after ABI, families need to be educated and supported through community rehab teams in a smart and accessible way.”

Rehab’s “postcode lottery” has been repeatedly highlighted in surveys where six out of ten people with neurological conditions had problems accessing the services and treatment they needed.

Lesley Pope, chair of the Independent Neurorehabilitation Providers Alliance (INPA), says that services need to be equitable across the country.
“Currently access to good neurorehabilitation is very much dependent on where you live and whether your commissioning body is educated about the benefits of it. There is often a huge battle to secure a placement and funding for much-needed neurorehabilitation and this can take many months during which time the person with ABI is left without the attention they need,” Pope continues.

“Commissioning bodies clearly need more in-depth knowledge and understanding of ABI.”

The UK Acquired Brain Injury Forum (UKABIF), one of the main brain injury organisations that supported Chris Bryant’s campaign, also hopes that the strategy will address equitable access to specialist neuro-rehab services for all those living with an acquired brain injury, whatever stage of their journey.

“We would like to see a programme of training and awareness amongst educators to break the cycle of young people without support and to reduce potential access to the justice system,” says Chloe Hayward, executive director of UKABIF.
“Additionally, we’d like to see a widely publicised concussion strategy and a focus on the availability of neurorehabilitation for children and young people.”
Pope says that raising awareness of acquired brain injury is key to improve patients’ lives as well as the neuro-rehab workforce capacity.

“Neurorehabiltation starts with highly skilled, specialist staff. Without them, quality of treatment will be severely impacted. Better awareness would lead not only to an increase in recognition of problems being associated with brain injury, but also to potentially better workforce numbers.”

Sativex approved for MS patients in Scotland

Multiple sclerosis (MS) patients in Scotland can now access medication Sativex on the NHS to help with spasticity, in a move that has been welcomed by MS support organisations.

The Scottish Medicines Consortium (SMC) has granted adult NHS patients the right to access Sativex in cases of moderate to severe spasticity where other treatments have not worked. Previously, Sativex had been approved for use on the NHS in England, Wales and Northern Ireland, but not in Scotland.

Sativex – a cannabis-based medication, which contains tetrahydrocannabinol (THC) and cannabidiol (CBD) – is the only drug in the UK with a licence to treat the muscle stiffness and spasms caused by MS, which can have a profound effect on the lives of patients.

NICE approved Sativex in England, Wales and Northern Ireland as a cost-effective treatment in November 2019, although patients report its implementation varies between different areas and NHS Trusts.
Through that being extended to Scotland, specialist health professionals can now offer a four-week trial of Sativex to people with moderate to severe MS-related spasticity which has not been improved by other treatments.

At the end of the trial, if their spasticity-related symptoms have improved, they can continue taking Sativex.

MS charities and support organisations have long campaigned for greater access to Sativex – which is also being trialled for its potential to treat brain tumours – and welcomed the move by the SMC.
“We are pleased that access to Sativex is now more equal across the UK, and we know that this will greatly improve quality of life for many in the MS community,” said David Martin, chief executive of the MS Trust.

“The challenge ahead is to ensure that everyone eligible can access this treatment.”

Morna Simpkins, director of the MS Society in Scotland, said: “We welcome the SMC’s decision.

“Sativex has been proven to relieve muscle spasms and their associated pain, leading to improved mobility, better sleep patterns and a better quality of life for the person living with MS and their partner, family and loved ones.

“We’ll continue to work with the SMC, NHS Scotland, individual health boards and neurologists to make sure Sativex quickly becomes available to everyone throughout Scotland whose life could be significantly improved by taking it.”

Hope for SCI patients in upper body function recovery

A pioneering study into the efficacy of spinal cord stimulation technology has delivered “statistically significant and clinically meaningful improvement” in upper body strength and function among people living with spinal cord injury (SCI).

The Up-LIFT study has trialled the safety and effectiveness of ARC-EX therapy – created by ONWARD – in treating upper extremity functional deficits in people with chronic tetraplegia. It marks the first large-scale clinical study of non-invasive spinal cord stimulation.

The international, multi-centre study – which involved two sites in the UK – enrolled 65 participants with an average time since injury of 5.9 years. Enrolment was completed ahead of schedule, despite the challenges presented by the pandemic.

Revealing it had achieved its primary endpoint of improvement in upper extremity strength and function, ONWARD reiterated its ambition to launch ARC-EX commercially in the second half of 2023.

“Our vision is to empower people with spinal cord injury to enjoy life in every way that matters to them. Today’s excellent results from the Up-LIFT study will help us transform that vision into reality”, said Dave Marver, ONWARD CEO.

“Our team is working hard to prepare regulatory submissions and to get ready for launch in the US and Europe. We are hopeful we can begin to positively impact the lives of people with spinal cord injury sometime during the second half of 2023.”

“The Up-LIFT study results represent a turning point in the field of spinal cord injury and paralysis science,” said Dr Marco Baptista, chief scientific officer of the Christopher & Dana Reeve Foundation.

“Functional recovery once deemed impossible may now be in reach. The Reeve Foundation looks forward to this technology advancing and, we hope, becoming widely available to our community.”

Medtech ONWARD continues to break new ground in its efforts to improve the lives of people living with paralysis, working to restore movement, independence and health.

Its STIMO-BRIDGE study involving its implantable stimulation device ARC-IM delivered life-changing results for some participants, who live with paralysis. On the first day following implant, all participants were able to take steps independently on a treadmill with body weight support.

After five months of rehabilitation, participants were able to use their legs to stand, walk, swim, and/or cycle. They also regained control of their trunk muscles.
Its ARC-EX technology is now delivering life-changing results to people in respect of their upper body control, with improvement in arm and hand function cited as being the highest priority among people with tetraplegia. Participants in the Up-LIFT study completed an average of 50 training sessions over a period of about four months.

A series of comprehensive assessments were performed at baseline and monthly thereafter to detect changes in sensory and motor function of upper extremities that directly translate into improved functional performance in activities of daily living.
“Restoring hand and arm function after spinal cord injury is life-changing, freeing people with paralysis to feed and care for themselves and be more independent in everyday activities,” said Dr Chet Moritz, study co-principal investigator (co-PI) and Professor of Electrical & Computer Engineering and Rehabilitation Medicine at the University of Washington.

“We are grateful to the many therapists, clinicians, and people with SCI who participated in this landmark study. There was very low attrition over thousands of clinic visits, a testament to the collective enthusiasm for this compelling therapy and for everyone’s determination to find new treatment options for people with SCI,” added Dr Edelle Field-Fote, study co-PI, director of SCI Research at the Shepherd Center in Atlanta, GA, and Professor at Emory University School of Medicine in the Department of Rehabilitation Medicine.

Detailed results will be made available after review by the FDA. The company plans to submit for regulatory approval in both the US and Europe within the next six months.

Funding call
for spinal cord
injury research
projects

A funding call has been launched for research
projects which aim to improve quality of life
and wellbeing of people living with
spinal cord injury (SCI).

Stoke Mandeville Spinal Research (SMSR) has announced its annual funding call for clinical researchers working to improve the lives of those – currently over 50,000 people in the UK alone – with SCI.

The funding – which this year invites international applications for the first time – will be awarded for projects of up to three years and focuses on four priority areas:

> Assistive Technology
> Neuropathic Pain
> Pressure Ulcers
> Urinary Tract Infection

Funding is awarded annually by SMSR, based at the National Spinal Injuries Centre (NSIC), whose aim is to enable people with paralysis to be active members of society and enjoy an independent life.

SMSR research manager Derek Cutler said: “This year, we are for the first time, inviting applications from both UK and international researchers.

“We hope that the pioneering research we are continuing to support will lead to new treatments, practical solutions for day-to-day living, therapies, and a deeper understanding of the complications associated with spinal cord injury.

“Since we launched our grants programme in 2019, we’ve funded over £400,000 of research. We hope this new round of funding awards will pave the way for even more innovative treatments to help people living with spinal cord injury.”

Application forms, details of the application process, and eligibility criteria, are available on the Stoke Mandeville Spinal Research website:
https://www.lifeafterparalysis.com/grant-application

Award for excellence in neuro-rehabilitation open

Entries are open for this year’s Franz Gerstenbrand Award, which recognises outstanding work in neuro-rehabilitation.

The award, run by the World Federation for Neuro-rehabilitation (WFNR), is open to clinicians, researchers and allied health professionals worldwide, and is worth £3,000 to the winner.

Submissions must demonstrate how a positive difference has been made to patient outcomes and can involve any aspect of neuro-rehabilitation, such as a patient or clinic management initiative, research project, best practice development or the use of a new technological development.

The work described must be completed and have already produced results or been published in the last 12 months.

The WFNR award is named after Professor Franz Gerstenbrand in recognition of his contribution to neuro-rehabilitation, and entries – invited both from WFNR members and non-members – are particularly encouraged from people aged under 35, ahead of the deadline on October 31.

The award is for a travel bursary to a clinical/scientific conference, professional development course or research project. For further information and an application form, visit: https://www.wfnr.co.uk/awards/awards
The winner will be announced at the 12th World Congress for Neurorehabilitation which takes place from December 14-17 at the Messe Wien Exhibition and Congress Centre, Vienna, Austria.

Rebuilding lives
after road collisions

Survivors and families impacted by the devastation of road collisions are being supported by a growing specialist charity which is dedicated to helping them rebuild their lives after life-changing – or even fatal – injury.

Aftermath Support was founded in Liverpool in 2005, following a successful pilot project between bereaved family members – whose loved ones had died in traffic incidents – alongside Merseyside Police, Headway and RoadPeace.

Since then, the charity has grown to independently support over 13,700 individuals and families to deal with the consequences of road collisions, and covers Merseyside, Cheshire, Lancashire and parts of Greater Manchester. It is the named road traffic collision support service for Merseyside Police.

Aftermath assists families on a one-to-one basis from the earliest days after injury or loss with a range of practical and emotional support – and also has an in-house counsellor – and helps to guide them through any police investigation and court process that may result from the incident.

Brain injury is particularly prevalent, with road collisions being the second biggest cause of traumatic brain injury, and its life-changing impact felt by survivors and their wider family and network alike.

To help meet the growing demand for its services – which has surged in the past 12 months in particular – Aftermath is adding two more people to its core team, to ensure it continues to provide the level of service and intervention families across the North West need.

“As a charity, we’re very niche in the service we provide, and I feel really passionate about what we do because we’re there for people often when they have nowhere else,” says Karen Blair, chief executive of Aftermath.
“A lot of people don’t realise that only people who are seriously injured or bereaved as a result of road crime are entitled to Victim Support – whereas we work with anyone who has been affected by a road crash. That’s quite a difference.

“We’re focused on meeting the needs of everyone that comes to us, we don’t discriminate in any way.”
Karen says that Wirral-based Aftermath is there as soon as a referral comes in, and its support is ongoing for months and often years.

“The minute we receive a referral, it’s allocated to one of the road traffic collision support team,” she says.
“Sometimes that will be within days of the crash, but sometimes it can be months afterwards. We always make that contact, just to let people know we’re here and what help and support we can provide.

“Particularly in the early stages after a crash, people are dealing with things like police investigations, dealing with serious injury or even planning a funeral, so it might not be the right time. But we’ll get in contact at regular intervals, just to check in with them until they’re at a point where they’re ready to talk or want to seek some support.

“Once they do engage with us, there’s a really broad range of support we provide, from putting them in touch with a personal injury solicitor, to helping them to access a funeral grant.

“We’re also really mindful of how stretched statutory services are, and the wait to see a counsellor can be at least 12 to 18 weeks, so we do have some counselling hours available. Counselling is often absolutely vital to the people we support.

“Once we work with someone, we don’t put a time limit on how long that will last. Sometimes when police are involved and there is an investigation and court process, it can take up to two years for that to be concluded.

“We’ll support them through that process, and then if they go away and it’s at that point the trauma really hits them of everything that has happened, they can come back to us at any time. We’re always here.”

To help meet the needs of the ever-increasing number of referrals it receives, Aftermath is growing its team – but as an organisation funded wholly by grants and donations, Karen says fundraising has never been more important.

“We are a small team considering the job we do and the area we cover, and over the past 12 months, referrals have increased,” she says. “Our job can be really stressful and emotionally-draining for the team, there are only a certain amount of people I’ll allow each of them to work with at any one time for their own wellbeing.

“Our trustees have kindly backed me in investing some of our reserves into frontline staff. We’ve got a fantastic, dedicated team, and the more of us there are, the more we can do."

“We have no ongoing grants at the moment, and fundraising is tough for us as it is for all charities. So while it is challenging, we have some amazing people doing such brilliant things on our behalf to raise money. One hundred per cent of donations received by Aftermath Support go directly to providing help to those affected by road crash.

“We are a service that you only hear of at the worst time of your life, we probably aren’t something you’d necessarily think of otherwise – but we’re here for people and families during the most difficult periods imaginable and help to support them through that.”

^{* Aftermath Support trustee Richard Crabtree is cycling 980 miles from Lands End to John O’ Groats to help raise vital funds for the charity.}^{Support him here}

Neurofenix secures US$7m to fuel expansion

Digital neuro-rehabilitation platform Neurofenix, which is helping to revolutionise remote rehabilitation for stroke patients, has secured $7million to help fuel its expansion and fund clinical trials in the United States.

Neurofenix, founded in 2016, uses sensor technology to improve patient recovery outcomes and widen options in neuro-rehab through its ability to deliver clinical grade rehabilitation remotely.

Its offering currently focuses on arm and hand therapy through its NeuroBall device, supported by its telemedicine platform Neurofenix Portal. Now, to help expand its product line further and invest in expansion into the United States – including clinical trials – Neurofenix has secured $7million in Series A funding, in a round led by AlbionVC, with additional participation by HTH, InHealth Ventures, and existing investors.

Guillem Singla Buxarrais, CEO of Neurofenix, who co-founded the business with Dimitrios Athanasiou, said: “Over the last six years, we have been creating and developing our patient-centric sensor-based technology and platform to transform neuro-rehab.

“In clinical studies, NeuroBall was proven to motivate patients to do hundreds of movement repetitions independently at home, which led to significant improvements in the range of motion, reduction of arm pain and return to daily activities using their arm and hand after a stroke.

“This has proven transformative to neuro-rehab as previously patients would not have access to in-person physical or occupational therapy due to factors such as insurance, financial, transportation and health barriers.

“We’re excited to partner with AlbionVC, HTH, and InHealth Ventures, and are hugely grateful for their support to scale our unique neurological therapeutics platform that we believe will change the world of neuro-rehab.”

The NeuroBall has been hailed as a significant breakthrough in neuro-rehab, having been designed with input from over 300 therapists and patients.
The device is personalised to each patient based on their current needs and enables them to perform increasingly challenging, repetitive movements to help build up strength.

The advanced sensors detect the smallest of movements so it can be used by impaired patients, whilst the corresponding app has activities and digital games to engage patients to use it regularly. The real-time feedback means they can see their progress on leaderboards to help motivate them to continue.

In three separate trials carried out at Brunel University London between 2017 and 2021, patients achieved 20 times more movement repetitions at home compared to other methods.

The portable nature of the device means they can take it anywhere with them to help regain strength, and patients can carry out their rehab exercises at home and record the results on the Portal which enables remote patient monitoring.

Dr Charles Carignan, Neurofenix board member, said: “Around 900,000 people in the US and UK experience a stroke every year, and most do not recover to their full potential physically, due to the lack of access to intensive physical and occupational therapy.

“I was blown away by what NeuroBall could provide to aid a patient’s recovery, including the utility for the hand or arm, the sensors, software and gamification.

“This is just the start of the Neurofenix journey as a sophisticated neuro-rehab programme.”

Andrew Elder, deputy managing partner at AlbionVC, said: “Neurofenix is poised to revolutionise physical recovery after a neurological injury, such as a stroke, traumatic brain injury or spinal cord injury. Its digital therapeutics platform, which can be used in rehabilitation clinics and by an individual bringing clinical-grade treatment into the home, which generates recovery of movement, strength, and activities of daily living faster and with better results.

“With my background as a neurosurgeon, I could see that Neurofenix is positioned to fill a major gap in the neuro-rehab industry.”