ISSUE 9 Q1 2019
KINDNESS CONQUERS ALL Why compassionate therapy is no soft touch THE ARNI WAY Strongman tears up stroke rule book
MAINSTREAM MARVELS The life-changing tech hidden in plain sight
SPORTING CHANCE Childhood concussion breakthrough
RECRUITMENT CRISIS Fixing the people power outage Â
WHEEL WILL OVERCOME A revolution in accessible gyms
ESCORTS, TINDER AND AN AGE-OLD TABOO
A major breakthrough in special communication tech NeuroChat is a neuro-communication system based on Brain-Computer Interface technology for people with severe speech and movement disorders. Millions of people around the world need special communication facilities after a stroke, neurotraumas and diseases such as as cerebral palsy, motor neurone disease, cerebrovascular disease and multiple sclerosis. NeuroChat allows typing without any speech or movement. Users mentally choose letters and objects on a virtual key board and, with the help of advanced technology, can regain the ability to communicate. More than 250 patients are already using NeuroChat for everyday communication.
Without this training most of them become permanently disabled and limited in daily activities. Hospitals and rehabilitation centres lack finances, specialists and equipment to help all these people. The unique features of our solution:
A revolution in home-based
• We move rehabilitation to homes, converting B2B
• We boost neuroplasticity by integrating a robotic
to a B2C model exoskeleton with contemporary neurotechnologies
Stroke affects around 15 million people worldwide. About 80% of stroke survivors must train intensively for several months to recover
like Brain-Computer Interface • We introduce a rental model to make neurorehabilitation affordable for millions of people worldwide
from motor or speech impairments.
• We reduce social and personal cost for stroke rehabilitation
NeuroChat and NeuroBotics
This is a union of Russian companies, developers,
are members of Industry
neuroscience, artificial intelligence, VR, AR robotics,
science laboratories and institutes in the fields of neuromarketing, medicine, pharmacy and more. Neuronet covers a wide range of market segments including neuroeducation, neuromarketing and communications, neuroassistance, neuropharmacy, neuromedicaltechnition, neuroentertainment and sports. There are around 300 members from across Russia and 250 supported projects, backed by over £60,000 of investment. Contact email@example.com for more information.
R USS IA’S LAT E ST R EH AB INNOVAT IO NS A RE C OM I N G TO T HE UK I N T R O D U C I N G N E U R O C H AT A N D N E U R O B OT I C S …
NeuroChat enables: • Communication with family and friends on social networks and messaging platforms • Writing and receiving SMS • Various Internet services such as news feeds, an online diary and many more • 5 languages of interface and an integrated translator • Up to 8 hours of usage of the wireless neuro headset on one charge • Both hospital and home usage • Integration with external devices, including smart home technologies
Contact NeuroChat here: www.neurochat.pro/en/ www.instagram.com/neurochat www.facebook.com/neurotrend
NeuroPlay EEG headset Neuro training device Neuro – wheelchair Brain-Computer Interface (software)
Find out more Visit our European site: www.aneurotech.eu Our Russian HQ: www.neurobotics.ru
Visit NeuroNet, NeuroChat and NeuroBotics on stand 600 at the European Neuro Convention in Birmingham on 26 & 27 March.
Welcome to NR Times, your quarterly update on neuro-rehab issues and developments affecting professionals and patients.
The ‘patient-centred approach’ is pretty much a given among reputable care providers. It generally means putting patients' needs and motivations first, with an overarching aim of improving their quality of life. But what if the patient expresses their wish to pay for a sex worker, or set up dates via apps like Tinder and has socially inappropriate behaviour that could put them in difficult situations? Our cover story this issue looks at the problems faced in navigating the potentially tricky issue of sex after a severe injury or the onset of neurological disease. What radiates from all the experts we speak to is that the impact of an individual’s sex life beyond the bedroom cannot be underestimated. In a neuro-rehab context, sex can be intrinsically linked to self-esteem, confidence and, of course, life quality. It can also be clouded by embarrassment among patients and loved ones, however, making it often awkward to address. There may also be legislative and logistical factors to consider. We hope our coverage on this topic helps to remove some of these barriers and challenges. Other discussion points this quarter include the personnel shortage in the care sector and various ways to beat it. In the neuro-rehab field, the issue is exacerbated by the urgent need for growth in service coverage amid rising brain injury numbers. Also on our agenda this edition is compassionfocused therapy, and its potential for success where more widely-used approaches might fail. Expert updates on childhood concussion, injury classification and stroke recovery are also offered, as are a couple of inspiring stories that typify the power of determination in rehab. Meanwhile, if you’re a regular reader of NR Times,
you may notice our front cover is marginally less shiny than usual. Having awoken to the need for everyone to do their bit to curb the global plastic waste crisis, we’ve swapped our laminated cover for a biodegradable varnish. We’ve also replaced our polythene mail-out bags for those made from potato starch. This means the entire magazine – including the wrapper you may have received it in – can be thrown on the compost heap to become worm food; ideally after you’ve read it! Andrew Mernin Andrew@aspectpublishing.co.uk
Sales: Jane Reed Jane@aspectpublishing.co.uk Chloe Hayward Chloe@aspectpublishing.co.uk Design: Aimee Thompson firstname.lastname@example.org
Published by Aspect Publishing Ltd, with UKABIF serving as an editorial advisory panel 20-22 Wenlock Rd, London, N1 7GU. Registered company in England and Wales. No. 10109188. Features labelled 'sponsored' are paid for by our sponsors who support the production of this magazine.
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NEWS The latest from the world of neuro-rehab.
SPORTING CHANCE Childhood concussion breakthrough
FITNESS FOR ALL A revolution in accessible exercise
MAINSTREAM MARVELS How to get consumer tech working for your clients
STUDY GUIDE Classification of brain injury
THE ARNI WAY The strongman transforming stroke care in the UK
KINDER CARE Why compassion-focused therapy is no soft touch
SECTOR IN CRISIS The great recruitment challenge facing rehab providers
38 The many taboos of sex and rehab
FUNDING GAP Leader calls for more stroke investment
EVENTS Dates for your diary in the months ahead
CLOCKING OFF Notes from the sidelines of neuro-rehab
The missing link in solving prison problem?
ANALYSIS Offenders at every prison and probation setting in the UK should have access to a member of staff trained in brain injury signs and symptoms, experts have urged.
“My head’s like a patchwork quilt under there,” says Wendy, an inmate at HM Prison Drake Hall in Staffordshire. “He beat me bad, bad, bad… I was just knocked out, unconscious, so many times.” Before slipping into the criminal justice system, Wendy suffered domestic violence in a four-year relationship. She is now part of a damning statistic; more than six in 10 female offenders have a history of acquired brain injury (AB)). This is according to research led by The Disabilities Trust, which found that of 173 female offenders at Drake Hall examined against the Brain Injury Screening Index, 64% had a history indicative of a brain injury. The vast majority of injuries (96%) were traumatic, while a third were sustained before the individual committed their first known offence. The Disabilities Trust’s findings follow the introduction of the charity’s Brain Injury Linkworker Service at the facility. The service provides support to women with a history of ABI, developing a “sustainable pathway” that supports rehab and helps prisoners to manage the transition between custody and the community. From the women supported through the service, there were 196 reports of severe blows to the head - 62% of which were sustained through domestic violence. Nearly half (47%) of the women with brain injuries had been in an adult prison five or more times and 33% sustained their first injury prior to their first offence. Following its findings, The Disabilities Trust has called for linkworkers – or a similar role with a strong understanding of brain injury – to be accessible to all prisons and probation settings. To date, the linkworker service has been rolled out into eight prisons, HMP Drake Hall, Preston, Leeds, Aylesbury, Bullingdon, Durham, Deerbolt and Cardiff.
An independent assessment of the charity’s research by Royal Holloway, University of London, found that women seen by the linkworker experienced improved mood and self-esteem, and enhanced confidence and positivity; key factors that have been previously identified as being essential for a woman to engage in rehabilitative programmes. The linkworker service also offered practical guidance for staff working with women with a brain injury, and alleviated pressure from other service provision such as mental health. It concluded that a brain injury linkworker service provides a strong framework which will benefit offenders and prisons by identifying and managing brain injury. Offenders helped by the service include ‘Sarah’ who says of her brain injury: “I was becoming very anxious about these problems that I was seeing ...not remembering the names of the people I’d spoken to or not being able to express myself properly ‘cause I’m forgetting what I’m saying.” Another, 'Helen', says: “When I was counting
From the women supported through the service, there were 196 reports of severe blows to the head - 62% of which were sustained through domestic violence screws in the work area I had to count them three times. It gets me very stressed, like when people tell me ‘go and tell this person [something]’ and [I’m] forgetting it.” As well as the rollout of a linkworker service, or something similar, The Disabilities Trust
called for the inclusion of brain injury screening as a routine part of the induction assessment on entry to prison or probation services. All prison and probation staff should also receive basic brain injury awareness training, it said. The charity also sought assurances that brain injury support would be aligned with “gender-informed” practice. It also recognised that further research is needed to examine the potential effect of brain injury on re-offending behaviour – as well as the role of neuro-rehab in contributing towards the reduction of re-offending behaviour. The landmark Time for Change report, published in October, made similar recommendations. The report, by the All-Party Parliamentary Group for ABI, called for reforms to criminal justice procedures and processes to factor in the needs of people with ABI. More ABI training for staff in the police, court, probation and prison services was also urged; as was brain injury screening for children and adults on entry to the criminal justice system. If a brain injury is identified, its impact, severity and related deficits should be measured and “appropriate interventions planned by a trained team”, the report said. Also, it recommended that all agencies working with young people in the criminal justice system, schools, psychologists, psychiatrists, GPs and youth offending teams work together to ensure individual needs are addressed. As the APPG report stated, evidence now emphatically links ABI to offending in young people, with prevalence rates for traumatic brain injury (TBI) as high as 60% in some studies (most recently, a 2018 comprehensive review published in The Lancet Psychiatry). In comparison, UK brain injury charity Headway says only around one in 200 people
ANALYSIS in the general population has been admitted to hospital with a head injury. But some experts have warned that it is misleading to suggest brain injury causes crime – and that crime/ABI links are highly complex and must be investigated further. Ryan Aguiar, consultant clinical neuropsychologist at Ashworth Secure Hospital in Liverpool, told the Guardian last year: “Brain injury does not lead to crime even though there are more prisoners with head injury and cognitive impairment per capita, or as a percentage, than there is in the general population. “Crime is a much more complex condition that is brought about by a myriad of social, environmental, personality, mental health and situational circumstances. “Head injury is only one among many and not even a first among equals.” Similarly, Graeme Fairchild, a reader in psychology at the University of Bath, warned: “One of the main problems is that many of the risk factors for criminal offending and violence, eg. being male, coming from a low socioeconomic status background, having ADHD, being physically abused, and abusing alcohol and other substances, are also risk factors for sustaining head injuries, so it is very difficult to disentangle cause and effect here.” Certainly there is an abundance of evidence of head injury prevalence in prison populations, even if studies unpicking the reasons for this link are lacking. A 2015 study of 613 adult prisoners found that 47% reported a history of TBI when screened on admission to HMP Leeds. It also found that 70% of those offenders reported their first injury before their first offence, backing up previous research linking TBI as a risk factor for offending. In 2011, a 35-year Swedish population study led by psychiatrist Seena Fazel calculated that people with a head injury on their records had a 9% chance of becoming violent offenders. This compared to the general population average of 2.5%. Recognising that brain injuries could be related to upbringing, the researchers also monitored the siblings of those with brain damage. They discovered a 4.5% chance of
becoming offenders too. There are numerous older studies linking head injury with the changing behaviour and lack of self-control that could theoretically lead to crime. Among them is a lengthy investigation into brain-injured Vietnam veterans in the US. It evidenced increased aggression in many veterans who had damaged their frontal lobe in the conflict. Public debate – and wild speculation - about ABI and crime has been fuelled over the decades by infamous examples of brain injured criminals. Ian Brady and Fred West both reportedly had some experience of head trauma, while Ronnie Kray was almost killed at age nine by a head injury sustained in a fight with his twin brother Reggie. No expert has ever suggested that their heinous crimes could be attributed to a brain injury but their medical history has at least raised questions about the impact of neurological injury on behaviour. Aside from such conjecture, there is now hard evidence – and lots of it – to show a vastly disproportionate level of head injury in offender populations. The criminal justice system and the many agencies that may interact with an individual on the slippery slope to prison have a series of recommendations they must address – and urgent action is needed. A promising development in recent years has been Headway’s Brain Injury Identity Card scheme (read more on p20). It is designed to help the police identify brain injury survivors and ensure they are given appropriate support when they come into contact with the criminal justice system. Brain-injured individuals carry a card which reads “My name is … I have a brain injury”. All the challenges they may experience as a result of the injury – such as fatigue, anxiety and information processing problems – are listed on the card. The scheme was launched in 2017 with the backing of the NHS, the National Police Chiefs Council, the College of Policing, Police Scotland, The Police Service of Northern Ireland and the National Appropriate Adult Network. Stories like that of ID card holder Dominic
Hurley underline its practicality. He was arrested three times for being drunk and disorderly but in each case, he was simply showing symptoms of his brain injury. His card enables him to avoid these misunderstandings. Meanwhile, events unfolding in the courtroom, particularly in the US, could potentially see brain injuries become a bigger consideration by jurors in years to come. A number of papers, including that led by Owen D. Jones of Vanderbilt University in Tennessee, are recognising the growing role of neuroscientific evidence in court. Jones references the story of Grady Nelson, who, in 2005, brutally murdered his wife Angelina. After stabbing her 61 times, he left a butcher's knife embedded in her brain. Later, his own life hung in the balance as the Florida jury that convicted him of murder next had to decide whether he would be executed or spend his life behind bars. Nelson’s attorney offered to provide neuroscientific evidence, specifically quantitative electroencephalography (QEEG) introduced through the testimony of a neuroscientist, to suggest that Nelson had potentially relevant brain abnormalities. The jury should hear this evidence, the attorney argued, because although it may not excuse Nelson’s behaviour, it should mitigate his punishment. In order for wife-killer Grady Nelson to be sentenced to death, seven of the twelve jurors (a simple majority) had to vote in favour of executing him. Only six did, so his life was spared by the narrowest possible margin. Following the vote, it appeared that the neuroscientific evidence had been crucial. Two of the jurors who voted against executing Nelson told the press that the neuroscientific QEEG evidence had changed their minds, given that they had each initially favoured his execution. One of them said: “It turned my decision all the way around. The technology really swayed me. After seeing the brain scans, I was convinced this guy had some sort of brain problem.” The paper states: “It is becoming increasingly
It is becoming increasingly common for lawyers to offer neuroscientific evidence, particularly brain images, in both criminal and civil litigation
common for lawyers to offer neuroscientific evidence, particularly brain images, in both criminal and civil litigation. In our view, this development is both promising and perilous depending on whether and how well courts can come to distinguish, within the contours of distinctly adversarial proceedings, between justifiable and unjustifiable inferences. "Neuroscientists have crucial parts to play in a legal system that needs to understand
and interpret neuroscientific evidence and to separate the wheat from the chaff. "The ability of neuroscientific techniques to shed light on important aspects of human cognition has generated hope that neuroscience can help to answer some perennial questions in courts of law. However, one should keep in mind that it is easier to misunderstand or mis-apply neuroscience data than it is to understand and apply it correctly, and this is
crucially important when lives and livelihoods depend on it. Whether courts can successfully navigate these challenging waters will depend on the level of engagement by neuroscientists.â€? Neuroscience in court is nothing new, but as brain mapping techniques and evidence on exactly how a brain injury can lead to crime becomes clearer, this development may well give ABI survivors a fairer deal in the criminal justice system.
HIV drug could speed stroke recovery A gene which allows HIV to infect cells could be the unlikely inspiration for a drug that accelerates stroke recovery. Neuroscientists have found that patients born without the CCR5 gene recover better from mild stroke than patients with it. US university UCLA teamed up with Israeli researchers to study the missing gene’s effect on brain function. CCR5 plays multiple roles in the body and is known as the gene which unlocks the cellular doorway that the HIV virus enters to infect the immune system. It is the same gene that Chinese scientists reportedly altered with a genetic engineering technique known as CRISPR to genetically modify human embryos. The current study builds upon earlier UCLA research in mice showing that suppressing CCR5 enhances neurons’ ability to form new connections and rewire the brain after injury. The 2016 study also demonstrated that the FDA-approved HIV drug maraviroc, which targets CCR5 to slow HIV progression in patients, improved learning and memory in mice. Maraviroc blocks CCR5 and, therefore, this latest study hypothesises whether the drug may also accelerate recovery from stroke. Researchers tested the drug’s effectiveness in suppressing CCR5 in a mouse model. “This is the first time that a human gene has been linked to a better recovery from stroke,” said senior author Dr Thomas Carmichael, chair of the neurology department at the David Geffen School of Medicine at UCLA. “Our discovery offers exciting potential for improving patients’ health and enhancing their quality of life. “We found that maraviroc blocked CCR5 in mice and boosted the animals’ recovery from traumatic brain injury and stroke. The big question left to answer was whether eliminating CCR5 would produce the same results in people.” Knowing that the absence of the CCR5 gene is common in Ashkenazi Jews, Carmichael and his team contacted researchers at
Tel Aviv University. Here, scientists were already following 446 stroke patients in an observational study. Led by neuroscientist Einor Ben Assayag, the study focused on patients who had suffered mild or moderate strokes, documenting improvements in walking, arm and leg control and other types of movement. “Einor’s lab had the patients’ blood samples and was evaluating their recovery from stroke after intervals of six months, one year and two years,” said Carmichael. “People missing the CCR5 gene showed significantly greater recovery in motor skills, language and sensory function.” One year after stroke, patients missing CCR5 also scored higher in tests assessing memory, verbal function and attention. Neurons produce CCR5 only during or after stroke. Deletion of CCR5 appears to promote recovery by enhancing plasticity, the ability of
the brain to rewire itself after injury. The scientists’ next step will be to launch a clinical trial testing the effectiveness of the drug maraviroc on stroke patients with the CCR5 gene.
Cancer drug linked to TBI treatment A cancer drug has been shown to reduce memory loss and signs of brain injury after concussion, in a study of mice. Researchers at the University of Utah Health and the University of Washington found that paclitaxel, a cancer drug approved by the US body, the FDA, offers protection to mice after experiencing mild traumatic brain injury (TBI).
Paclitaxel is a chemotherapy drug used to treat several types of cancer and works by stabilising microtubules; the microscopic support beams that give cells shape and offer a mechanism for molecules to move through the cell’s cytoplasm. Researchers theorised that the drug could also stabilise the support framework inside neurons damaged by head impacts. They examined the effect of paclitaxel using a mouse model and found that it prevented memory loss in the mice that experienced a mild TBI. They also imaged the mouse brains and found reduced brain abnormalities in the injured mice that had received paclitaxel. “I believe this work is the tip of the iceberg that could transform how we treat traumatic brain injuries,” said Donna Cross, research associate professor in radiology and imaging sciences at the University of Utah Health and first author on the study. “This drug shows promise for reducing brain injuries and may also help fortify the brain against the effects of future head injuries. “Concussive forces to the head can affect all of the cells in your brain. We believe paclitaxel stabilises many different cell types, to help circumvent the downstream cascade of events following a brain injury.” David Cook, of the department of medicine at the University of Washington and a collaborating researcher for the study, added: “One of the things that make these findings interesting is that it helps emphasise the importance of how TBI can disrupt the delicate balance that exists between microtubule stability and instability in the brain.” The authors caution that it remains to be seen whether the treatment is effective in people. Further, it is not known how long following an injury the drug can be given and still be effective. The results of the study are available in the Journal of Alzheimers Disease.
Professionals working with vulnerable adults join forces A new organisation has been formed to help improve the professional support offered to vulnerable adults who lack or have limited mental capacity. The Professional Deputies Forum (PDF) brings together solicitors and legal executives who act as professional deputies, and those who work alongside them, to share best practice, news and views. It also aims to serve as a conduit between its members and third parties such as the Office of the Public Guardian, the Ministry of Justice, the Court of Protection and the Law Society. Its overall aim is to contribute to the work of professional deputies on issues related to vulnerable adults who lack or have limited mental capacity. The PDF is an independent, not for profit
organisation and membership is open to all Court of Protection appointed deputies, while associate membership is available for other members of staff who assist deputies. There is also an honorary membership scheme for persons with special skills or knowledge concerning deputyship and Court of Protection matters. The PDF hosted an annual conference, sponsored and hosted by Leeds-based law firm, Clarion, in March. Speakers included Alan Eccles, of the Office of the Public Guardian and Joan Goulbourn of the Ministry of Justice. The PDF’s directors include Russell Caller of Gillhams Solicitors LLP, Holly Chantler of Morrisons Solicitors and Warners Solicitors’ Martin Terrell.
For daily updates on developments related to the diagnosis and treatment of brain and spinal injuries and neurological conditions, visit www.nrtimes.co.uk.
Ireland to lead landmark Parkinson's research New research to investigate the causes of Parkinson’s disease will get underway following a multi-million pound funding boost. The €7m (£6m) project, which will be coordinated by the Royal College of Surgeons in Ireland (RCSI), aims to increase understanding of how cells in the brain become damaged in Parkinson’s, so more effective treatments can be developed. Known as PD-MitoQUANT, it will focus on the cellular component, mitochondria, which contributes to cell death and neurodegeneration, as growing evidence has emerged of their role in Parkinson’s. The PD-MitoQUANT coordinator is Professor Jochen Prehn, RCSI chair of physiology, director of the RCSI Centre for Systems Medicine and principal investigator at FutureNeuro, the SFI Research Centre for Chronic and Rare Neurological Diseases. He said: “This project will join forces with top scientists in academia and industry to bring a fresh look on how we identify and test novel drugs for the treatment of this devastating movement disorder.” The key PD-MitoQUANT Investigators based at RCSI are Dr Niamh Connolly and Dr Orla Watters, Department of Physiology and Medical Physics and Centre for Systems Medicine, who will be focusing their research on Parkinson’s in the coming years. Dr Connolly said: “While there are therapies currently available for Parkinson’s, they do not improve all symptoms, nor do they slow or prevent disease progression over time. “We hope that a systematic understanding of Parkinson’s developed from this project will lead to improved tools for the early stages of drug development, so pharmaceutical companies can develop new treatments in the future.” Professor Raymond Stallings, director of research and innovation at RCSI said: “Research that informs improved treatments for patients is at the core of RCSI’s mission to lead impactful research that addresses Irish and international health challenges such as
Parkinson’s. RCSI is proud to be the first Irish Institution to lead an innovative medicines initiative project which is a testament to our strong expertise in high quality neurological research that drives advances to improve the lives of people with life-changing conditions.” The project involves 14 partners from nine countries, including: academic experts from: RCSI; Institut du Cerveau et de la Moelle Epinière; German Center for Neurodegenerative Diseases; Neuroscience Institute of the National Research Council; University College London; Radboud University Nijmegen Medical Centre and the Centre National de la Recherche Scientifique.
Small and medium businesses are also involved, including GeneXplain GmbH, Mimetas B.V. and Pintail Limited. Pharmaceutical companies including Teva Pharmaceutical Industries Ltd, H. Lundbeck A/S and UCB S.A are also on board, as is patient advocacy organisation Parkinson’s UK. The project will run for three years, receiving €4.5m in funding from the EU’s Horizon 2020 programme and €2.46m in-kind from European Federation of Pharmaceutical Industries and Associations members and Parkinson’s UK. Some one million people live with Parkinson’s in Europe and no treatment can currently stop, slow or reverse the condition.
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Neuro-rehab body gets new chair
Double boost for MND researchers
The Independent Neurorehabilitation Providers Alliance (INPA), which represents specialist health and social care firms in the UK, has a new leader. Lesley Pope, who originally trained as a speech and language therapist, and was previously director of rehabilitation services at HCA Healthcare UK, has been appointed chair of the organisation. Lesley has been working with INPA since last August, helping to revise inspection standards and undertaking facility visits to review current members' services against new criteria. She says: “During the last few months I have visited many units managed by INPA members and have gained a unique insight into the breadth of services provided by members and a greater understanding of the ongoing challenges they face. “I am therefore honoured and excited to accept the role of chair of INPA in the coming year and to have the opportunity to work with its members to continue to raise awareness not only of neurorehabilitation in general but also the vital contribution made by the independent service providers.” Lesley takes up her new post at a pivotal time for private neuro-rehab providers. The All-Party Parliamentary Group for Acquired Brain Injury recently underlined the national shortage of neuro-rehab beds as a major challenge in the push to better handle brain injuries in the UK. In its ‘Time for Change’ report, it estimated that 14,600 neuro-rehab inpatient beds are needed to meet the annual caseload of around 300,000 ABI admissions. Currently there are only 4,600, including 1800 in the independent sector. The private sector players represented by INPA are under increased pressure to help fill this shortfall in services. Another concern of the APPG is the current shortage of neuro-rehab personnel and the general poor understanding of the role of neuro-rehab in the wider healthcare context. One of the recommendations, which could potentially be delivered with the support
Motor neurone disease researchers have uncovered a way of potentially slowing the disease by boosting energy production in the central nervous system. At some point in an MND patient’s life, their motor neurones start to die, leading to muscle wasting and eventually death – typically within two years of diagnosis. Disruption in the ability of the central nervous system to create energy is thought to be a major contributing factor and could influence disease progression rates. But scientists in Sheffield have discovered an intervention that could potentially accelerate energy production in the central nervous system and encourage brain cells to better support motor neurones, thus limiting the disease’s progression. They converted skin cells into brain cells called astrocytes – star-shaped brain cells that play a key role in supporting motor neurones by acting as a crucial source of energy in the central nervous system. They then compared the energy metabolism of cells taken from MND patients versus healthy controls. This was made possible using new 'metabolic phenotyping' technology developed by Biolog, Inc, a Californian biotech company. As a result, the University of Sheffield’s Institute for Translational Neuroscience (SITraN) researchers discovered the loss of a key enzyme that could have major consequences for how the central nervous system copes with ageing, stress and loss of energy metabolism. Working in collaboration with Biolog, Inc., they sought differences in the metabolism of astrocytes from MND patients. Dr Allen, a Motor Neurone Disease Association-funded senior researcher, found that cells from MND patients had reduced ability to turn a metabolic substrate called adenosine into energy due to loss of an enzyme called adenosine deaminase. The consequence of this loss could be a toxic build-up of adenosine in the central nervous system and subsequent loss of inosine
An estimated 14,600 neuro-rehab inpatient beds are needed to meet the annual caseload of around 300,000 ABI admissions. Currently there are only 4,600, including 1800 in the independent sector
of INPA and its members, is to: “Conduct a national review of neuro-rehab to ensure provision is adequate and consistent across the UK.” INPA describes itself as a group of independent specialist health and social care providers who “share the common goal of ensuring the delivery of excellent care in neurorehabilitation”. It was established in 2004 under the leadership of Professor Mike Barnes to form a strong voice in the sector, ensuring that neurorehab is delivered in quality environments, by trained and experienced staff in a caring way to assist the rehabilitation process. It recently extended its membership to associate providers, partners who offer specialist services to providers and community providers.
*LEMCO is exhibiting at the European Neuro Convention in Birmingham on 26 & 27 March.
production, a metabolic intermediate that is generally protective. Until now, the link between MND and inosine production through the loss of adenosine deaminase had not been made. When Dr Allen fed the brain astrocytes inosine, energy production increased and the patient’s astrocytes became more supportive towards motor neurones, helping them to live longer. Dr Allen says: “We are really excited about this set of results as no one has implicated adenosine deaminase in MND before. “Our results indicate that the higher the level of adenosine deaminase, the greater the protection against adenosine mediated toxicity and the greater support towards motor neurones when given inosine. “Although we are at an early stage, I think increasing adenosine deaminase levels, combined with inosine supplementation has the potential to slow down disease progression in MND patients. But a lot of further testing in the laboratory has to be performed.” Altering the level of adenosine deaminase by gene therapy has previously been shown to be beneficial and safe in patients suffering from severe combined immunodeficiency disease. Inosine is a safe and readily-available nutritional supplement, which has been successfully tested in Parkinson’s disease patients. There is therefore hope that, in the future, this combination of treatment could work in people with MND, improving their quality of life and helping them live longer. Meanwhile, a separate study has raised the prospect that statins could help to protect against MND. It stems from the discovery that high cholesterol could be a possible risk factor for the development of MND. This is according to a large study of genetic data led in the UK by Queen Mary University of London, in collaboration with the National Institutes of Health in the US. The results suggest that cholesterol-lowering drugs, such as statins, could be used to prevent the onset of MND, if confirmed in clinical trials. Dr Alastair Noyce, from Queen Mary’s Wolfson
Institute of Preventive Medicine, say: “This is the largest study to-date looking at causal risk factors for motor neurone disease and we saw that higher levels of LDL cholesterol were causally linked with a greater risk of the disease. “We have well-established drugs that can lower cholesterol and we should look into whether they could protect against this terrible disease, which currently has no cure. “The next steps will include studying whether lowering levels of cholesterol might have a protective effect against MND, and potentially evaluating the use of cholesterol-modifying drugs in people at risk of MND.” Published in the journal Annals of Neurology, the team searched genetic datasets of around 25 million people (including more than 337,000 people from the UK Biobank) to find risk factors for developing MND. While the datasets did not contain data on individuals’ actual cholesterol levels, the
team studied genetic markers that are linked to cholesterol levels, and are more likely to suggest a causal link with risk of MND rather than simply associations, which are usually reported from observational studies. A randomised control trial would be the definitive proof to confirm any causal link and the ability of statins to prevent MND. In addition to the causal effect of high cholesterol, they also found genetic associations with smoking behaviour and lower levels of educational achievement, and an increased risk of MND. While low levels of exercise were associated with a protective effect, more aggressive exercise was associated with increased risk. However, of these findings, only high cholesterol emerged as a clear modifiable factor that could be targeted to reduce the risk of MND. The research was carried out at Queen Mary’s Preventive Neurology Unit, which has been funded by Barts Charity.
COMPANY NEWS sponsored feature
New care home opens for adults with acquired brain injuries The Richardson Partnership for Care has opened its sixth specialist residential care home in Northampton. The Coach House will accommodate 11 adults with acquired brain injuries who need longterm rehabilitation and residential care. The Coach House was officially opened at a ribbon-cutting ceremony performed by Liam Prior, a brain injury survivor. He was the first person to move into The Richardson Partnership for Care’s adjacent home, The Mews, back in December 2010. Liam has since moved out into his own flat, but keeps in touch with the team at The Mews. The opening was attended by around 40 brain injury professionals. They also enjoyed presentations by senior members of the multi-disciplinary team (MDT) at The Richardson Partnership for Care: Dr
Seth Mensah, consultant neuropsychiatrist, told the story of Phineas Gage and what that tells us about the brain and human behaviour; and consultant clinical psychologist, Pedro Areias Grilo, presented his innovative tool for capturing positive behaviours in neurorehabilitation. In addition, Jo Throp, clinical director at Krysalis Consultancy, spoke about the brain and its function from the perspective of a Neurological Occupational Therapist. Greg Richardson-Cheater, managing partner at The Richardson Partnership for Care, said: “Every 90 seconds, someone in the UK is admitted to hospital with an acquired brain injury, and for many of them it will be life
changing. Our goal is to help them to fulfil their potential and improve their quality of life. “The Coach House provides a high-quality environment that is comfortable and homely as well as safe and practical. Combined with the high calibre neuro specialists in our MDT, we have demonstrated that our unique approach delivers positive outcomes for our service users.” The Richardson Partnership for Care was established in 1989 so this year marks its 30th anniversary. It is an independent and family-run organisation, enabling it to take a long-term approach to high quality care provision. The Coach House is its sixth specialist residential care home and one of three dedicated to the support and rehabilitation of adults with acquired brain injuries. The remaining three provide residential care and support for adults with learning disabilities and complex needs. For more information about The Richardson Partnership for Care, visit the provider online at www.careresidential.co.uk or call 01604 791266.
Ribbon cutting at The Richardson Partnership for Care to mark the opening of The Coach House – performed by Liam Prior (centre), a former service user.
ID card scheme hits 5k milestone Over 5,000 brain injury survivors in the UK are now carrying an ID card designed to help police and other professionals understand their circumstances. National charity Headway launched the Brain Injury Identity Card in summer 2017 as part of its Justice Project, which aims to raise awareness of brain injury and its effects throughout the criminal justice system. It is designed to ensure that survivors receive appropriate support, amid overwhelming evidence that a significant proportion of the prison population have sustained a brain injury. In addition, it also widely accepted that many survivors are frequently victims of social injustice as they go about their daily lives. Brain injuries can cause problems with memory, concentration, information processing, communication as well as emotions and behaviour. For many, however, the effects of their brain injury are largely unseen or misunderstood. This lack of understanding can cause social barriers for people to overcome, while leading some into contact with the criminal justice system. The ID card helps police officers easily identify brain injury survivors and ensure that they receive an appropriate response and support. The inclusion of the official logo of the National Police Chiefs Council gives the card credibility with officers on the ground. Each card is personalised, helping the card holder to explain the specific effects of their brain injury and request any help they may need. Presentation of this card to an arresting officer or custody sergeant should result in the card holder being treated as a vulnerable adult, offered the support of an appropriate adult and referred to Liaison and Diversion staff. The card displays the number of a unique 24-hour criminal legal helpline that provides access to specialist solicitors trained in
One of our service users was refused a taxi as the driver assumed he was drunk. He showed his card and the taxi driver apologised and took him home
understanding brain injury. The scheme has the full support of the National Police Chiefs Council, Police Scotland, the Police Service of Northern Ireland, Liaison and Diversion and the National Appropriate Adult Network. Police officers have welcomed this initiative because it enables them to differentiate when they are dealing with a vulnerable adult rather than someone who is setting out to be difficult, aggressive or obstructive. They believe this will save time and scarce resources at a time when the police service is fully stretched. Among brain injury survivors, it has also been well received. And feedback received by Headway from card carriers suggests that the scheme has a positive effect in many ways beyond simply alerting the police to their personal circumstances. Recent comments include: “I was in B&Q and was struggling how to explain what I needed. The assistant saw my ID card and took his time with me.” “It makes me feel safer and more confident if I run into difficulties.” “One of our service users was refused a taxi as the driver assumed he was drunk. He showed his card and the taxi driver apologised and took him home.”
Hawking in bank note running World-renowned physicist Stephen Hawking is currently favourite to be chosen as the face of new British £50 note. Last November the Bank of England announced that the new ‘bullseye’ note would feature the face of a prominent British scientist. According to SkyBet, Mr Hawking, who died in March last year at the age of 76 - and struggled with motor neurone disease most of his life - remains the favourite at 4/7. Close behind are a selection of particularly strong candidates, including the father of modern computer science Alan Turing, as second favourite at 5/2, followed by Ada Lovelace, a pioneer in the same field, at 15/2. Then come the British chemists Dorothy Hodgkin and Rosalind Franklin at 10/1 and 12/1 respectively. Mary Seacole, renowned for her medical work during the Crimean War, is at 14/1.
The skyʼs no limit Putting wheelchair air travel passengers ﬁrst by ensuring safe, digniﬁed and comfortable transfers on and off aircraft.
easyTravelseat powered by Able Move, is a new addition to Sir Stelios Haji-Ioannou easy® family of brands. Looking to help serve the global wheelchair air travel community which has been long ignored by the aviation industry. By providing a personal in-situ transfer seat which: Prevents researching and arranging equipment to be in place at airports Is placed into the wheelchair on the day of travel The passenger remains in the seat until they reach their destination, including on the ﬂight The ability to be lifted off the aircraft in an emergency
If you are a person who requires, works or knows somebody who needs physical transferring assistance. Please visit easyTravelseat at www.easytravelseat.com and use ‘ASPUB10’ at checkout for 10% discount – NR Times Subscribers only.
Removes the need for Special Assistance to shuffle you around to put transferring equipment in place Removes manual lifting under the arms and legs Provides pressure relief with its cushion, helping with comfort on the aisle and aircraft seats
In 2018, just in the UK alone it is estimated around 1.3m passengers with reduced mobility requests were carried out. Around 82,000 of these required transferring on and off the aircraft. Under half of the main commercial airports in the UK are equipped with a form of transferring equipment. If however ﬂying to Spain, only 2 of the 24 main commercial airports have transferring equipment available. With Spain being the most popular destination to visit, why wait when a solution is available now!
Spinal cord tissue regeneration success
Researchers from California have successfully produced tissue scaffolds that mimic the 3D architecture and mechanical properties of spinal cord tissue. Spinal cord injury affects hundreds of thousands of people worldwide, with no treatments currently available. Healing is hindered by the lack of nerve regeneration in the injured spinal cord due to factors such as inflammation and glial scarring. But researchers from the UC San Diego School of Medicine and its Institute of Engineering in Medicine have now produced a spinal cord scaffold utilising micro-scale continuous projection printing. Fabrication techniques such as 3D printing provide a means to generate scaffolds that can support and guide nerve regeneration. These scaffolds can be designed and produced to match the size and shape of the injury site.
Sweetened drinks pose post-menopausal stroke risk
Key to the scaffold production was biomimicry - mimicking the natural structure and mechanical characteristics of the spinal cord. The researchers used rats with spinal cord injury to test their 3D printed scaffolds. The researchers examined the animals six months after transplantation and saw significant physical improvement in the group implanted with scaffold and cells compared with the controls. Spinal cord injuries often carry high morbidity and poor prognosis, owing to insufficient regeneration of nerves following injury. This new technology may provide a significant step towards improved treatment by creating an environment that can be tailored to specific injuries to foster natural nerve repair. The research team is currently looking to conduct trials on larger animal models, and aims to take the technology into human trials soon.
Artificially sweetened drinks may lead to increased risk of stroke among women over 50, according to new findings. The observational US study found that women drinking more than one diet soda or other kind of artificially sweetened drink, every day, had a higher risk of strokes caused by a blood clot. The Women’s Health Initiative study was headed up by Yasmin Mossavar-Rahmani, PhD, of the Albert Einstein College of Medicine in New York and was recently published in industry journal Stroke. In an effort to cut calories many people opt for sweetened drinks, however this research and others have shown that these artificially sweetened beverages may not be harmless and high consumption is associated with higher risk of stroke and heart disease. Data from 81,714 post-menopausal women aged 50-79 in a study tracking health outcomes for an average 11.9 years was analysed. Participants reported how much diet drinks, sodas, low calorie, artificially sweetened colas/soda/pop and fruit drinks they had consumed. Women who drank two or more artificially sweetened beverages a day were 23% more likely to have a stroke; 31% more likely to have a clot-caused stroke; 29% more likely to develop heart disease/fatal or non-fatal heart attack; and 16% more likely to die from any cause, than those who drank diet drinks less than once a week or not at all.
PDS Hygiene introduces the Bio Bidet PDS Hygiene introduced the Bio Bidet to the UK in September 2007. Bio Bidet is a toilet seat, a bidet and a dryer all in one and by definition a brilliant space saver. It can replace most conventional toilet seats. Bio Bidet offers an efficient and sophisticated alternative to purpose built shower toilets at a fraction of the price and
settings to suit their personal preferences for temperature and pressure-controlled washing and blow-drying operations.
A spray nozzle extends out of the seat to the required position to provide a gentle stream of aerated warm water. At the end of the wash cycle, the nozzle retracts back into the seat to allow for the warm air-drying cycle to be activated. The nozzle self-cleans automatically before and after each use. The normal operation of the toilet is unchanged; it operates conventionally with the addition of the bidet. Bidet seats are in common use in the Far East. All hotels and public buildings in Japan are fitted with them, as are millions of private homes. None were approved for connection to the water main in the UK until PDS Hygiene redesigned the Bio Bidet to comply with British regulations for backflow prevention. There are two models available: BB800 Prestige and BB-1000 Supreme.
is the first electronic bidet toilet seat with WRAS (Water Regulations Advisory Scheme) approval for installation and connection to the water main in the UK. It allows users to wash and blow-dry themselves while remaining seated after finishing on the toilet. Touch buttons on a control panel enable the users to activate and adjust the variable
It allows users to wash and blow-dry themselves while remaining seated after finishing on the toilet. BB-800 has a fixed control panel on the side of the seat while BB-1000 has a remote control unit which adds to its functionality as a mobility aid. BB-1000 also comes with the added feature of a deodoriser. Bio Bidet would normally be plumbed into the water supply feeding the toilet cistern (using the flexible hose and Tee connector supplied) provided the pressure is at least 0.4 bar. Bio Bidet is equipped with a power cord that can be plugged into a standard domestic power socket protected by a residual current device (RCD). When fitted in a bathroom it would normally be connected via a switched fused spur and RCD. This would be done by a qualified electrician. The static weight limit for the Bio Bidet seat is 21 stone (133kg).
The prices inclusive of next working day delivery throughout the UK mainland are: BB-1000 (Remote Control) £530 + VAT BB-800 (Fixed Side Control) £465 + VAT Bio Bidet can be purchased VAT free if the person is eligible to receive goods zero rated for VAT. Bio Bidet comes with a 12 months parts and labour warranty on both models. More information is available on www. pdshygiene.com including a video presentation on the “home” page and an interactive virtual demonstration on the “products” page. The Installation Manual and Operating Instructions can be downloaded in PDF format from the “download” page. Tel: 01603 426 700 E-mail: firstname.lastname@example.org
Europeâ€™s neuro experts gather to share rehab insights Rehab will be a prominent theme at the European Neuro Convention, which this year takes place in Birmingham on 26 and 27 March. Also high on the agenda are brain stimulation, diagnostics and mental health; with organisers expecting around 3,500 neurologists, speech and language therapists, physiotherapists, clinicians, rehab specialists and hospital trust representatives to attend. The convention, at the NEC, is billed as the only trade show in Europe for brain and spinal experts and will feature over 200 exhibitors. Among them will be those offering new and emerging approaches to rehabilitation, with a range of innovative product and services firms. The CPD-accredited seminar line-up, meanwhile, brings together a number of experts who aim to push the boundaries of rehab and recovery. Seminar topics will cover the integration of new technology into neuro services and updates on the latest research in the field. Dr Yaara Erez, of the University of Cambridge, will be discussing the mapping of the mind during awake surgery â€“ and how that could shape future treatments. Dr Michael Grey, a global voice on neuroplasticity and neuro-rehab generally, will be presenting on the power of virtual reality in rehab. Other presentation topics include neuropathic pain in spinal cord injury, impulsivity and brain injury rehab and using digitalisation and clinical data to inform service development in brain injury care. Also being discussed will be the development of eccentric controls in clients with CNS dysfunction and multichannel FES for foot drop and knee control. Speakers will also share insights on child brain injury, molecular science in relation to neurodegenerative disease, physical impairments after brain injury and neuro-rehab technology. Meanwhile, the University of Plymouth will be running a series of interactive workshops
with a focus on neuro-rehab. Topics covered include vestibular dysfunction in MS, balance and falls in neurological conditions and the potential value of exercise in Parkinsonâ€™s. An introduction to the physiology and pathophysiology of eye movements will also be delivered. These will be hosted by professionally registered academic professionals currently working at what is considered one of the most cutting-edge research facilities in the UK. There are also additional master classes hosted by orthopaedic device manufacturer, Thuasne. They will cover design, materials, and prescription of orthopaedic devices. These sessions must be booked in advance and are CPD accredited. The European Neuro Convention runs alongside the European Oncology Convention, as well as the Medical Imaging Convention. Tickets for the European Neuro Convention are free and available now from neuroconvention.com, where you can also book your place on any of the master classes.
Seminar topics will cover the integration of new technology into neuro services and updates on the latest research in the field
COMPANY NEWS sponsored feature
Innova aims to step up case management projects after pivotal new hire Healthcare equipment supplier Innova Care Concepts has recruited a new case management specialist with the aim of topping over £1.5 million in sales in the company’s litigation projects department.
A patient and healthcare worker using a ceiling track hoist system installed by Innova
Litigation and case management includes working with clients who have had life-changing injuries that may have been caused by anything from a car accident, through to medical malpractice and negligence. Innova specialises in designing and installing specialist equipment like ceiling track hoist systems and hydrotherapy pools as part of home adaptations. Case management specialist Jason Fulcher joined Innova at the beginning of February and will work exclusively on projects throughout the Midlands and the South of England. Jason said: “I’m delighted to be joining the Innova team at such an exciting time. To expand into a new market is one thing, but to be expanding within it in the space of a year is truly extraordinary. “I think case management work will be particularly fulfilling for me because you know that your work is really making a difference to someone’s quality of life. "I look forward to helping Innova expand
across the Midlands and the South.” The company began its venture in the case management market just over a year ago and now anticipates that it will gain an extra £1.5 million in sales from these projects alone. Innova is also hoping to host a free case management training day this year to introduce and discuss how litigation projects can be handled more efficiently to benefit the client. Innova’s managing director, Tom Hulbert, said: “It’s fantastic to have Jason on board with us. He’s already contacting occupational therapists and case managers to see how we could help them with their clients. “When we first expanded into case management projects, I would have never thought it would take off so quickly. "Last year, we did over £750,000 of extra business just from litigation work, so we believe that this year we could easily double that and get one step closer to reaching our company vision of being the most sought-after brand in the healthcare sector.” Innova Care Concepts is a healthcare
New recruit Jason Fulcher equipment supplier that focuses on combining aesthetics and functionality to create new, easy-to-use products. Case management and litigations projects include creating accessible environments for severely injured individuals.
For more on Innova’s product range visit: www. innovacareconcepts.com.
ABI taskforce targets education gaps A new taskforce has been set up to help improve the way the children with brain injuries are treated within the UK education system. The National ABI Education and Learning Syndicate (N-ABLES) has been set up to identify ways to ensure that all education professionals have a minimum level of awareness and understanding about ABI; and the educational requirements of children and young people with this condition. It was established by brain injury charity UKABIF on the back of recommendations made in the All-Party Parliamentary Group for Acquired Brain Injury’s recently-published Time for Change report. The report pointed to a widespread lack of awareness of ABI and its impact on learning among education professionals. It also highlighted problems in identifying the specific educational support needs of brain injured individuals and a lack of liaison between health and education professionals. Since its launch, the new body has already held two meetings with representatives of the Department for Education. The N-ABLES steering group includes Dr Emily Bennett, clinical psychologist at Nottingham University Hospitals NHS Trust, and Petrina Goldman, CEO of the Eden Dora Trust for Children with Encephalitis. Also on board are Nathan Hughes, professorial research fellow at Sheffield University, Lisa Turan, CEO of the Child Brain Injury Trust, and Chloe Hayward, executive director of UKABIF. Other developments in the aftermath of the APPG report include ongoing talks between the Ministry of Justice and the Criminal Justice Acquired Brain Injury Interest Group (CJABIG), also managed by UKABIF. CJABIG aims to encourage all the agencies working with young people affected by brain injury in the criminal justice system to work together to ensure offenders with ABI are fairly treated.
Another concern raised in the APPG report was the inconsistent delivery of the Rehabilitation Prescription, which is supposed to be available to all individuals with an ABI on discharge from acute care. It should also be held by individuals, with copies also made available to GPs. Research suggests these actions are not always carried out. In response, the Clinical Reference Group (CRG) for Major Trauma has now reviewed the format and use of the existing RP and announced a new version, RP2019, which requires actions for the GP and documents services that the individual has been referred to. UKABIF promoted the new RP2019, with versions for both adults and children, in March during Brain Awareness Week (11-17 March). UKABIF chair Andrew Bateman says: “UKABIF is working hard to facilitate change for individuals with ABI. This hidden epidemic impacts on so many government departments so it’s important to raise awareness of the needs of our members, and ensure the recommendations in the Time for Change report are delivered."
This hidden epidemic impacts on so many government departments so it’s important to raise awareness of the needs of our members, and ensure the recommendations in the Time for Change report are delivered
INSIGHT sponsored feature
Post-traumatic amnesia in focus
Dr Keith Jenkins and Lorraine Nickolls , of St Andrew’s in Northampton, explain how the specialist mental healthcare provider handles this pivotal post-injury phase.
Post-traumatic amnesia (PTA) relates to the time after a period of unconsciousness (although this is not always the case) following an acquired brain injury, when the injured person is conscious and awake, but due to their brain injury is behaving or talking in a bizarre or uncharacteristic manner. Specific symptoms of PTA are individual, but most commonly involve memory and orientation impairment. When combined with confusion, agitation, distress and anxiety, uncharacteristic and difficult to manage behaviours can manifest. These may include aggression, swearing, shouting, disinhibition, and wandering, which in the context of a trauma ward or general hospital setting, can be difficult or unsafe to manage. PTA is a phase of the recovery after an ABI and is ordinarily temporary, lasting for a few minutes, hours, days, weeks or, in rarer cases,
months. However, it is difficult to predict its duration and how the person will be when they emerge from their PTA. At St Andrew’s, we are able to respond quickly to assess and admit medically stable patients in PTA, whose behaviour makes it unsafe or clinically unsuitable to care for in their current setting. Our environment provides a safe facility with specialised staff who are trained to support the person who is in PTA. Our teams provide orientation, a flexible environment to suit individual needs and supervision to promote recovery. We are also able to reduce medication that may have been used to limit the impact of the person’s behaviour whilst retaining safe management of risk. In addition, we monitor recovery from PTA using standardised measures where possible, such as the Galveston Orientation and Attention Test (GOAT), and, when the person is able to engage, we carry out a range of post brain injury assessments, including; • Neuropsychological • Occupational therapy • Physiotherapy • Speech and language therapy • Dietetics • Physical health • Psychiatry We then work closely with local teams to establish the next step for the person. Everyone is different but admission of a person in PTA is typically between 4-6 weeks. Our team will ensure the person leaves St Andrew’s with all their assessment and care information, to enable a smooth transition. We provide support to help individuals move to local providers, home with support or offer further inpatient services, and we can also establish links to support services such as the Brain Injury Relatives Group that meets on our campus every month, and Headway, the brain injuries association.
Dr Keith Jenkins is consultant clinical neuropsychologist and Lorraine Nickolls is ward manager of the Brain Injury Rehabilitation and Care Integrated Practice Unit at St Andrew's. See www.stah.org for more information.
New MRI sensor can image activity deep within the brain Reseaarchers at the Massachusetts Institute of Technology (MIT) have developed an MRIbased calcium sensor that allows them to peer deep into the brain. This new technique allows users to track electrical activity inside the neurons of living animals, enabling them to link neural activity with specific behaviours. Calcium is a critical signalling molecule for most cells, and it is especially important in neurons. Imaging calcium in brain cells can reveal how neurons communicate with each other; however, current imaging techniques can only penetrate a few millimetres into the brain, say the research team. Alan Jasanoff, the senior author of the paper, is an MIT professor of biological engineering, brain and cognitive sciences, and nuclear science and engineering, and an associate member of MIT's McGovern Institute for Brain Research.
He said: “This paper describes the first MRIbased detection of intracellular calcium signalling, which is directly analogous to powerful optical approaches used widely in neuroscience but now enables such measurements to be performed in vivo in deep tissue." In their resting state, neurons have very low calcium levels. However, when they fire an electrical impulse, calcium floods into the cell. Over the past several decades, scientists have devised ways to image this activity by labelling calcium with fluorescent molecules. This can be done in cells grown in a lab dish, or in the brains of living animals, but this kind of microscopy imaging can only penetrate a few tenths of a millimetre into the tissue, limiting most studies to the surface of the brain. "There are amazing things being done with these tools, but we wanted something that would allow ourselves and others to look deeper at cellular-level signalling," Jasanoff says. To achieve that, the MIT team turned to MRI, a noninvasive technique that works by detecting magnetic interactions between an injected contrast agent and water molecules
inside cells. The researchers tested their sensor in rats by injecting it into the striatum, a region deep within the brain that is involved in planning movement and learning new behaviours. They then used potassium ions to stimulate electrical activity in neurons of the striatum, and were able to measure the calcium response in those cells. Jasanoff hopes to use this technique to identify small clusters of neurons that are involved in specific behaviours or actions. Because this method directly measures signalling within cells, it can offer much more precise information about the location and timing of neuron activity than traditional functional MRI (fMRI), which measures blood flow in the brain. "This could be useful for figuring out how different structures in the brain work together to process stimuli or coordinate behaviour," he added. MIT postdocs Ali Barandov and Benjamin Bartelle are the paper's lead authors. MIT senior Catherine Williamson, recent MIT graduate Emily Loucks, and Arthur Amos Noyes Professor Emeritus of Chemistry Stephen Lippard are also authors of the study.
CASE MANAGEMENT sponsored feature
Achieving best outcomes in case management According to the Case Management Society UK, case management is “a collaborative process which: assesses, plans, implements, co-ordinates, monitors and evaluates the options and services required to meet an individual’s health, social care, educational and employment needs, using communication and available resources to promote quality cost effective outcomes”. By this definition, case management can be seen as a shared creative process, undertaken by a professional and their client, aimed at identifying solutions to address the client’s unmet needs and helping them to achieve their goals in a resource-efficient manner. Research has consistently shown the inextricable link between biomedical health, psychological wellbeing and social factors. In the context of case management, in order to maximise clients’ rehabilitation potential, biomedical issues should therefore not be isolated from their psychological and social counterparts as these components are interconnected and interrelated. Achieving this truly “biopsychosocial approach” in case management requires clients to engage actively throughout their rehabilitation programmes; in the planning, goal-setting and review processes as well as in their commitment to rehabilitation modalities. According to Lequerica et al (2009), common barriers to engagement include fear of pain, depressed mood and cognitive issues, but by “making therapy tasks meaningful and explicitly related to personal goals” these can be overcome. There is also “compelling evidence that patients who are active participants in managing their health and healthcare have better outcomes than patients who are passive recipients of care” (The Kings Fund, 2011). Established in 2013, Chroma was launched
with the aim of enabling people to access creative and innovative healthcare solutions which are tailored to them. Initially this vision was realised through the provision of creative therapies, including music, art and dramatherapy. Over the years Chroma’s portfolio has grown to include digital healthcare solutions, several university research partnerships and most recently, Chroma Case Management, which was launched in 2018. At the heart of Chroma Case Management is the belief that each client’s journey to recovery is unique and that for rehabilitation programmes to be truly effective, they need to be personalised, meaningful and crafted to meet that individual’s needs and circumstances. Chroma Case Management brings together traditional and creative, evidence-based approaches at the appropriate time in a client’s rehabilitation programme in order to maximise their engagement and overall outcomes. Chroma Case Management is headed up by Victoria Collins (pictured). Victoria is an occupational therapist who has been involved in case management for over 10 years; having worked as a case manager and senior manager at a number of highly regarded case management companies in the UK, throughout the injury acuity spectrum. For the past five years, she has also sat on the board of directors of CMSUK.
Victoria says: “Chroma Case Management works with highly skilled case managers who are registered healthcare professionals, grounded in traditional practices and who devise innovative and evidence-based approaches to help clients recover from complex injuries. “When used from the early stages of rehabilitation, our coordinated, collaborative and holistic approach will ensure clients receive the rehabilitation they need to restore their quality of life and get back to work and valued activities as soon as possible. Importantly, our approach ensures rehabilitation interventions are delivered early and are reasonable and proportionate in relation to the client’s injury and level of need.”
References CMSUK, (2019). What is Case Management?. [online] Available at: https://www.cmsuk.org/casemanagement/what-is-case-management [Accessed 17 Feb. 2019]. Lequerica, A., Donnell, C. and Tate, D. (2009). Patient engagement in rehabilitation therapy: physical and occupational therapist impressions. Disability and Rehabilitation, 31(9), pp.753-760. The Kings Fund (2011). Making Shared DecisionMaking a Reality. No Decision about me, without me.
A sporting chance in concussion fight New findings on sports-related concussion in children could help to improve management of the condition and stem long-term problems that can arise years after injury.
Over the muddy school fields where children jostle for glory, a growing menace looms. Sports-related concussion has, thanks to surging awareness of the condition, become an increasing worry for parents, teachers and grassroots stars. The response has been multipronged; head-guards have been encouraged, rules have been changed and scientists have been busily working on new pitch-side tests. Most of the research focus has been on what happens inside the white lines and immediately after. But experts at a pioneering facility in the US are now looking at childhood concussion long after the initial flashpoint - and may well have made an important breakthrough. They are delving deeper into the fact that many children who have clinically recovered from concussion may have lingering problems, often only detectable by neuroimaging technology. Better identifying them could be crucial in shaping postconcussion therapy and recommendations about returning to sport. They may also help to develop early bio-markers to longterm problems that may arise years after a childhood concussion. The research is led by Dr Stacy Suskauer
(pictured below), research scientist at the Kennedy Krieger Institute in Baltimore. It is monitoring what happens in adolescent brains after the ‘all clear’ has been given following a concussion. She says: “Preliminary data suggests that children have lingering subtle motor dysfunction after concussion and are at a higher risk of musculoskeletal and concussion injuries when they return to play. “We also have preliminary data that suggests motor dysfunction is associated with changes in activation patterns in the motor network of the brain.” Recovery from concussion is currently assessed using behavioural measures
including reports about how a child acts, feels and performs in tests of cognitive skills, balance and motor speed. None of these measures show how the brain is working to produce these behaviours. Suskauer says: “If a child appears to have recovered after concussion, but we find out that their brain is actually working harder to achieve a particular behaviour or, essentially, compensating, then an extra concussion in the future may mean they cannot compensate as much.” As well as influencing post-injury advice on when to return to play, researchers are hoping to find a way to better predict longterm complications; namely from Chronic Traumatic Encephalopathy (CTE). “Some alteration in functional brain connectivity patterns could perhaps be an early warning sign that the child’s brain activation is already changing. More hits sustained after that, on top of ageing which is another hit to the brain, may mean their brain can’t compensate as well. We also see a number of children who appear to initially recover after concussion but maybe after three to six months have the onset of anxiety or depression. So we are also trying to understand if we can find out more about
the biology behind that.” Suskauer was involved in a preliminary study which evaluated 15 adolescents with sports-related concussion at two weeks after their injury – and again after around a month. Those not deemed to have recovered by the second visit had a further assessment after their clinical recovery. They were measured against the Physical and Neurological Examination of Subtle Signs (PANESS) scale and compared to age and sex-matched non-concussion individuals. Adolescents with concussion had a poorer PANESS performance than the control group at all stages, including after their apparent recovery. They did, however, improve between assessments. Suskauer is principal researcher on the new, larger scale study, which is funded by the US agency, the National Institutes of Health. It aims to build on these findings by using functional MRI to evaluate brain functioning in children who have recovered from concussion. Measurements will be taken at the time of recovery from concussion, then three and 12 months after recovery. Behavioural assessments will also be carried out at these intervals. “We are also collecting data on additional injuries experienced during the year, in order to preliminarily evaluate whether motor function and / or imaging patterns predict who will be injured. “My hope is that the next level will be to develop more biological markers [for longterm concussion problems]. I also believe in another generation we will be looking at genetic markers. I believe genetics must have some influence on outcomes from concussion or multiple concussions.” In the meantime, Suskauer is busy in her role as co-director of the Kennedy Krieger Institute’s Center for Brain Injury Recovery. The centre’s approach to concussion is, she believes, a rarity in that every child with concussion is seen by both a neuropsychologist and medical physician on every visit. “In the US, concussion clinics tend to be run by either neuropsychologists or physicians. If the neuropsychologist can’t prescribe medication for their headaches, they may
be referred to a neurologist who has lots of appointments. Parents might receive conflicting advice and it could be left to them to sort out a way forward.” Concussion has soared up the public health agenda in America in recent years. Mostly this has been fuelled by the NFL’s escalating CTE epidemic. Post-mortems have confirmed CTE in scores of players, while many ex-pros believe they are living with the symptoms of the disease. In 2017 neuropathologist Ann McKee examined the brains of 111 deceased NFL players – only one of them did not have CTE. Football as defined on the UK side of the pond is also facing up to a CTE crisis, with
repeated heading of the ball being linked to an increasing number of dementia cases. This came after a coroner ruled in 2002 that the dementia that killed former England star Jeff Astle was caused by “industrial disease” triggered by heading footballs. Against this mass awakening to the dangers of impact sport, a seemingly safer alternative has blossomed. Having emerged out of grassroots, flag football now has its own national US league with a growing stable of teams. The American football equivalent replaces tackling players to the ground with swiping a flag or flag belt from the player with the ball. Suskauer says: “Sports can play a critical role
in a child’s life in terms of physical activity and socialisation. We help each family consider the risks and benefits to their child of continued sports participation and respect that ultimately parents will decide what is best for their children. “Ongoing efforts toward examining how to make sports as safe as possible, whether through improved safety equipment or changes to exposure to contact, represent an important component of concussion prevention.” As with any country, measuring the scale of concussion in the US accurately is difficult given the variability of when and where care is sought.
“One group has estimated that there are one to two million sports and recreation-related concussions in children each year in the US, and this does not include the large numbers of concussion that occur outside of sports activities. “Overall, numbers of concussions have increased, despite decreasing rates of participation in organised sports. Public awareness has improved though there is still inconsistency in identification and management of concussion, including in schools. All US states have some legislation related to childhood concussion, with the goal of minimising morbidity and mortality related to concussion.” Suskauer was part of the team that recently published the first US-based guidelines for the evaluation and management of all childhood mild traumatic brain injuries (including concussion). It is hoped that they might help to improve standards of concussion care across the US. “While many academic centres are at the forefront of developing and consuming the growing evidence related to concussion, this is not possible for paediatricians and practitioners. Additionally, while large cities may offer multiple options for specialty concussion care, this is not available in rural settings. “In particular there is growing evidence supporting the limiting of strict rest after concussion and encouraging a gradual and supported return to safe activities as tolerated. We find this typically demands an individualised approach to each child.” Achieving this approach is a significant challenge, however. “One of the limitations in the States is that children might only get 10 minutes with their primary point of care, such as a paediatrician or their family doctor. It is more likely that this will result in a single approach such as ‘just stay home from school’ rather than a tailored plan that is possible when there is time to sit down and carefully consider each child’s situation.” Find this feature online at nrtimes.co.uk for more on Dr Suskauer’s research and concussion recommendations.
Hear from a global pioneer in child brain injury care Dr Stacy Suskauer is heading to the UK later this year to share insights drawn from an illustrious career in child brain injury care and research. She is among the esteemed line-up of speakers at the National Paediatric Brain Injury Conference 2019 in London on 6 September, delivered by the Children's Trust in partnership with Irwin Mitchell. This year's event aims to take a visionary look at what the future holds, under the banner of: ‘Building the future of childhood brain injury: where do we go from here?’ Suskauer's presentation will focus on diagnosis, evaluation and treatment of children with disorders of consciousness. She will share some of her research in this area, looking at short and longer term outcomes and the development and validation of behavioural assessment techniques. As co-director of the Center for Brain Injury Recovery at Kennedy Krieger, Suskauer oversees clinical services and provides direct care to children with acquired brain injury of all severities. Under her leadership, the institute’s Rehabilitation Continuum of Care has expanded to include successful programmes for children with concussions and those with disorders of consciousness. As director of the Brain Injury Clinical Research Center at Kennedy Krieger, she is also the principal investigator on a number of studies. Her overriding research focus is to better understand and improve outcomes after childhood brain injury. Early bird tickets for the Children’s Trust conference, at London’s Royal Society of Medicine on 6 September, are available until 15 April. To book visit: www.thechildrenstrust.org.uk/conference.
fitness for all As evidence of the value of exercise in severe injury rehab builds, former athlete Drew Graham has opened a specialist gym for people who face the long road to recovery. Deborah Johnson meets the founder of Pop Up Gym to discuss his passionate crusade to make exercise more accessible for people in wheelchairs.
Having had a career as an elite athlete abruptly ended through a freak accident, Drew Graham now dedicates himself to inspiring others through exercise. Drew’s Pop Up Gym - a dedicated facility in the North of England for people with spinal and neurological injuries, alongside a number of outreach sessions across the region to bring the service closer to those who need it - illustrates his passionate advocacy of fitness as a means of rehabilitation. Research has shown the benefits exercise can bring to people who have suffered brain injuries, with improved weight and stress management, emotional regulation, and increased strength, energy and attention all being directly linked to regular fitness sessions. One report concluded that brain injury survivors, who engaged in exercise three times per week for 30 minute intervals, reported less depression, improved perception of physical abilities and increased community integration in comparison to those who did not exercise regularly. And it is through Drew’s own experience that he has created a gym and associated sessions solely for people who have mobility or paralysis issues as a result of a brain or spinal injury, to increase the accessibility to fitness and avoid the feeling of being the ‘odd one out’ in mainstream gym facilities. It was back in September 2014 that Drew, while training for a triathlon in the United States, jumped into a lake and broke his spine leaving him quadriplegic. He spent three months in a US hospital and benefitted from its ultra-modern rehabilitation centre - but it was when he returned to the UK that he realised the absence of such specialist facilities for patients in this country. “There are gyms that people with wheelchairs or disabilities can go to, but there is usually a very limited amount of equipment specifically for wheelchair users, if any at all. I often felt like the odd one out, like everyone is looking at me, and that can be very off-putting for people who could be
getting the benefit of exercise as part of their recovery,” said Drew. “The gyms that are most accessible charge anything from £60 to £100 a session and that is too much for most people. They may be able to go once or twice, but it can’t be a regular thing as costs mount up. I wanted to create something where people like me would feel comfortable, where I can exercise and get the benefit of that, and be able to socialise with other people too - statistics show that 20 per cent of wheelchair users are socially isolated, so that social aspect is hugely important. “I thought that instead of whinging about the lack of these types of places, I’d create one myself - and the fact that we are pretty much at capacity for all of our sessions tells its own story about how much somewhere like this was needed.” Since opening a year ago, Pop Up Gym, which operates on a not-for-profit basis, has proved a popular resource for people with brain injuries across the North of England, many of whom travel for miles to visit Drew’s site in Gateshead, Tyne and Wear. Those who are recovering from strokes are among the most frequent users, and already there have been many examples of strong progress through using the gym in addition to their programmes of physio and other therapies. Pop Up Gym, as well as offering gym equipment and tailored sessions, is keen to promote a holistic support system to its users, working closely with other professionals and organisations to give people the best possible chance of recovery through an effective rehabilitation programme. Significant investment has been made in fitness equipment to aid recovery from paralysis and immobility with functional electrical stimulation (FES) bikes alongside a host of other equipment, including arm bikes, upright rowers and wheelchair accessible weights machines. Its equipment is valued at over £100,000, making it one of the most advanced specialist fitness facilities of its kind with
an array of state-of-the-art equipment. And at £10 a session, it has been priced to be accessible to anyone who needs it. The nature of people’s injuries and medical needs will determine how much physical activity they can do. But experts have highlighted the benefits of cardiovascular workouts (through using machines like the bikes or rowers), strength training to challenge muscles (which can involve use of weights and resistance bands), and flexibility exercises, to help stimulate brain injury patients. “We have a lot of regulars who have had strokes, and people who have other neurological injuries, and we have trainers here who can help and support them. Through my own experience I understand the road to recovery and the many challenges you face on a daily basis. It is so rewarding for the whole team to see the progress people make over the course of weeks and months,” said Drew. “For example, we can use our machines to help people strengthen their weak side or weaker parts of their body, our team are able to help them regain and re-learn the strength and co-ordination they once had.
"There was one guy recently who had a stroke and he couldn’t drive, gradually he has been able to get to the point where he is driving again and it is such a great feeling that we have helped him with that. “The fact we are also helping with the social isolation so many people feel is very important to me. This is something that is widespread among people with brain injuries or other disabilities, but here we have created a great community. “Our youngest gym user is 18 - anyone from the age of 16 can come here - and the oldest is 79. There are all ages, all backgrounds, everyone is different but they have things in common too through their shared experience. We have lots of laughs and help people through the difficult times that of course arise. Exercise is so important and we are here to support and encourage all the way.” Drew continually seeks to highlight the benefits of exercise as part of the rehabilitation process, and believes gyms
which cater for people in wheelchairs should be much more commonplace. With his own fundraising efforts prior to opening Pop Up Gym securing over £50,000, and additional support being received from the likes of the Matt Hampson Foundation - established to help support and inspire seriously injured people through the means of sport and physical exercise - Drew believes there is scope to develop the concept further across the UK. “Things do have to change with regard to provision for people in wheelchairs, I think it is a great shame there are not more Pop Up Gyms out there. We would love to operate from places across the country, but that’s in the much longer term - there is a need for these type of centres now to help people with their recovery, and I would love to see greater numbers of gyms for people with disabilities in a developed country like ours,” he said. “Exercise using the kinds of specialist equipment we have can be very important,
and in this kind of environment too, it was hugely important for me and we see it with the people who come to us. “The NHS does its best but there just isn’t the funding available for this sort of thing, and private sector gyms are often too expensive for people to access. Operating as a charity works well in this sector and gives the opportunity to everyone, not just those who can afford it. "Hopefully we can inspire others to follow our lead and see the need to open gym access up to people in wheelchairs, as this can play a big role in recovering from brain and spinal injuries. "It’s a great pleasure to be able to support people in the way we are and to see the benefit and enjoyment they get through coming into the gym, but I do hope that becomes much more widespread and common in the UK as it is certainly needed.” www.popupgym.org.uk
Do sexual services really have a role in recovery? Could they even be funded as part of a patientâ€™s care package? And why is sex still such a taboo in care homes and hospitals? NR Times reports on the professionals helping to make sure sex is not forgotten in the drive to improve life quality after severe injury.
Sex workers can play an important, if controversial, role in boosting confidence and quality of life for people with profound disabilities. Here pioneering sex therapist Tuppy Owens tells Andrew Mernin why it’s time to stop running away from the issue. “Just because people are disabled, doesn’t mean they don’t have sexual urges,” says Tuppy Owens, who has spent decades helping people with disabilities enjoy sex and find love. Owens is a sex therapist, campaigner, published author and former adult model. She is also founder of the TLC Trust, which helps disabled people to access sex workers safely. Users visiting the site can browse a database of sex workers who have been vetted by TLC to check they can provide a safe and understanding experience for people with a range of disabilities; including those related to brain and spinal injury and neurological disease. TLC is closely linked to the Outsiders Club, also founded by Owens to help people with social and physical disabilities find partners, make friends and enjoy “peer support”. After “helping a couple of disabled guys get laid” in 1978, she formulated plans for a club run by and for disabled people looking for friendship, romance and support. The link between experiencing sex – via TLC – and finding love, possibly through the Outsiders Club, is absolutely intrinsic, believes Owens. Crucially, sexual services can help to build the self-esteem and confidence needed to enter a loving, intimate relationship. “If a disabled person feels nervous about starting a sexual relationship because they don’t really know what their bodies are capable
of, they could go to a sex worker a couple of times so that they could be a better lover when they do find a partner. “We don’t know how many sex workers are hired, how many disabled people use them or how they find them. Often their assistants or healthcare professionals will organise it for them because they are better [technically]. We vet both the sex workers and the people who want to join Outsiders to make sure the disabled people are safe.” The legal aspect of helping disabled clients access sex workers is fraught with risks. At a very basic level, the individual must have capacity to make a choice about consenting to sex. But professionals looking to help clients visit a sex worker must of course consider a range of legal and other implications (as case
manager John Walker explains on p42). Owens’ mantra on the issue of legality is that: “It is illegal not to support disabled people to enjoy the same pleasures as others enjoy in the privacy of their own homes, under the Equality Act 2010 and the Human Rights Act 1998. “This is great because when someone complains that they aren’t allowed to have sex, I can quote those laws and they have to go back to the person who won’t allow them to do it and say that’s illegal to stop them.” TLC-vetted sex workers may visit the client’s house, offer services at their own accessible property or at a hotel. In a residential care setting, Owens says, “there is usually someone running the home” that wouldn’t allow this sort of thing to happen on site. “Care homes are becoming more interested but whether they would actually allow sex workers in the home is another thing.” In terms of criminal law, the exchange of sexual services for money is legal in England, Wales and Scotland. A number of related activities are illegal, however, including soliciting in a public place, kerb crawling, owning or managing a brothel and pimping. Prostitution is illegal in Northern Ireland, meanwhile. “People think sex work is still illegal in this country – even people who should know better,” says Owens. Once the legal minefield is navigated, other challenges may arise, including the potential
threat of emotional attachment issues. Owens says: “If a person gets too keen on just one sex worker, we might suggest that they find another one because we don’t want them to fall in love. Obviously, a sex worker may have lots of other clients so there’s no point in getting too attached.” Aside from mere pleasure, there are many other reasons why a person would choose to visit a sex worker. According to TLC, a common motivation for site visitors is to be taught what their bodies are capable of and how to please a potential partner. Some users seek a “girlfriend or boyfriend” experience – pretending to be partners either in public in a non-sexual way or in the bedroom – or wish to lose their virginity. Others may be unable to achieve an orgasm alone, while acceptance is also an important factor. TLC says: “Sexual expression may mean many things, and disabled people need to know that you will not be judged by your requests, however embarrassing you find them. People who provide sexual services have heard it all before, and are totally discreet. “For many disabled people, just being in a warm set of arms, and having their bodies accepted, is incredibly powerful and helps to
For many disabled people, just being in a warm set of arms and having their bodies accepted is incredibly powerful
build your sexual confidence and walk tall ,or wheel tall, in the world "Having your sexuality taken seriously without stigma or disapproval can be liberating and life-changing. For some, actually enjoying an orgasm at last can bring your life into balance.” While male users may instigate the use of one of TLC’s vetted providers, women are advised to contact TLC first as it can be easy for them to “be lured by unprofessional guys”. Owens says: “There tends to be more men looking for sex workers than women. With TLC I always tell women to ring me first so I can walk them through it. I want to be absolutely sure that they have a nice time - and that
always works.” An anonymous female user of services promoted on the site says: “Due to a combination of ill health and traumatic personal experiences, I had spent a long period of time avoiding physical contact and intimacy, but had reached a point where I felt confident enough to address the situation. “I had many concerns, about safety especially, but I liked the way the website gave nononsense information and everything seemed very open…I was keen to work with ‘professionals’, as I thought that after all they knew what they were doing and also working with people with all kind of issues, disabilities and health issues meant they had experience of dealing with situations that might not be easy/ obvious for others to deal with.” The woman was initially advised to meet a practitioner who offered a full body massage to help her to reconnect with herself physically; before considering taking the next step. She says: “I was extremely nervous but the gentleman providing the service was kind, professional and at all times made it clear that I was able to stop anything that I did not like. In the end, everything went well and was far less difficult then I expected. "Having taken this first step I then corresponded briefly with the second person
I had been put in touch with and set up a booking. Again, the practitioner was lovely, caring, very open and had a great sense of humour and he made me feel safe at all time. Both experiences have been really helpful and, in some way, much less of a big deal than I thought they were going to be, in setting me back onto the path of being ‘physical’ again.” Owens founded the TLC Trust in 2000 with the support of a disabled man who had reached his mid-40s without losing his virginity. Since then, scores of sex workers have been vetted and joined, with many happy customers along the way. Among them was the young lady who wanted to buy herself a “birthday shag” for her 21st, and a man whose parents sought out a sex worker to help him have his first sexual experience at 38. Owens would like to see disabled people’s desire to experience sex and love being taken more seriously by the professionals around them and society in general.
“Things haven’t really moved on in recent years, in fact I think they’ve gotten worse. Often people come to the Outsiders because they have been very lonely. "Not only do they not have a good sex life, but they may have few friends, which is terrible. Even if they don’t end up finding a relationship they’ve been given the confidence to flirt and do other things that help to form relationships.” Owens, who won a UNESCO award in 2015 for her innovative approach to sexual health and human rights, sees sexual services as empowering and positive to people with severe injuries – not shameful or something to be embarrassed about. Could their costs therefore be factored into an individual’s care package? Owens would like to see this, although she is doubtful it will happen anytime soon. “When you think about how much compensation a brain injured person requires, how much would they need to hire a sex worker [regularly] from when they were injured?
Having your sexuality taken seriously without stigma or disapproval can be life-changing
Obviously when they are younger, they would have a sex worker more often, maybe twice a month, then a bit less when they are 50 or so and less again when they are 80. It could be quite expensive overall.” The prospect of sex workers becoming just another intervention on the rehab journey seems somewhat remote. However, as Owens has long argued, sex is an integral part of the human experience and simply ignoring it under a cloud of taboo benefits no-one.
Sexual services and rehab – a case manager’s view
When a client asks to visit a sex worker, professionals must navigate a tricky terrain with no manual to guide the way, writes brain injury case manager John Walker. The matter of clients using sex workers predisposes that they have the mental capacity to engage in that relationship. Having the capacity to have sex is a different question from having the capacity to utilise a sex worker however; and from a legal point of view, this is a foremost consideration. Another consideration is the notion of the law of unforeseen consequences, in that embarking on the arrangement could result in all sorts of unexpected results. It is therefore incumbent on a professional such as a case manager to risk assess the whole process as best they can. There is also the potentially complex situation that surrounds the client’s family. The adult brain injured person rarely exists in isolation, but rather in the context of their family. Understandably, families affected by severe injury tend to be more risk averse and
protective, although sometimes, for example, parents who you may expect to be antagonistic towards the idea of sex workers, can actually be very liberal about it. But overall, the case manager may be faced with very divergent views from the various people in the client’s life. Even after these challenges have been addressed, there are some relevant legal barriers that must be overcome before you consider putting a client in touch with a sex worker. One part of the law determines how the process is driven along. Any practitioner in the area must be very clear that they are not, in any way, causing or inciting the process to take place. Sections of the Sexual Offences Act 2003 ensure that the individual with whom the client would engage, for example, is not underage and is operating in the UK freely of their own volition. Practitioners have to be very mindful of the legal context and make sure they are operating within criminal law. They must also navigate the fact that lots of bits of legislation can have contradictory effects in the UK. Of course, as Tuppy Owens mentions in her interview, there are also relevant elements of the Equalities and Human Rights acts, which help to make a strong case for access to sexual services by disabled individuals. It is important to stress that the majority of brain injured adults who express an interest in visiting a sex worker never go on to do so. From a rehab perspective, the issue may be approached as a problem-solving exercise. The client might tell you “I want this” but because of their brain injury may not be aware of the range of different factors in achieving it. Working through the barriers to fulfilling this aim doesn’t mean the client will necessarily achieve it; but the process of pursuing it can serve as good cognitive, psychological and emotional practice that might better equip them to deal with life in the future. At the same time, taking a client’s sexual requirements seriously is important and can positively influence their rehabilitation. While most sex-related issues that occur after a brain injury are those that affect existing intimate relationships, some clients will indeed seek a sex worker visit. They may see the process as a stepping stone towards having the skills and
confidence to pursue a loving relationship. Sex is a very basic human need and without it people can become frustrated. After a brain injury, what wasn’t necessarily a driver towards behavioural problems could become a contributing factor to the overall difficulties the client has. Obviously, sex is also closely linked with self-esteem and self-worth. There is certainly anecdotal evidence that young men with brain injuries can benefit from a safe, carefully arranged sexual encounter. For various reasons, including greater frequency of brain injury prevalence, this client group seems to be the most likely to seek sexual services after injury. If clients have difficulties with inhibitory control caused by the brain injury, addressing their sexual frustrations could help to reduce possible behavioural problems in the community. There are a number of different agencies who deploy sex workers with experience of working with clients with neurological impairment. Clearly there is no prescribed method to helping clients narrow this field. Instead, the process involves conversations with agencies to work out whether there is someone with the adequate experience conveniently located for the client. In the entire management of this tricky issue, case managers can find themselves operating from two very different positions. One is from the perspective of care and nurture and a commitment to introducing new experiences where possible. The other is slightly opposing in nature, with a remit of control, risk management and consideration of the law. Always being aware of your position on this spectrum can help to manage the situation in the interest of the client’s wellbeing. In summary, there is no guide book on this topic for brain injury professionals and each case must be considered in its own context. Based on my own experience I would strongly recommend discussing the issue as a multidisciplinary group – and definitely do not ignore any sexual concerns your client has, however awkward the topic may seem. John Walker is a brain injury case manager who runs Education and Case Management Services with his wife Judith James.
From marital faux pas to dating game pitfalls How occupational therapists play a key role in unlocking the power of sex in rehab.
Occupational therapy, as defined by the NHS, is supporting people whose health prevents them from doing the activities that matter to them. When the slightest mention of the activity provokes mass embarrassment among clients and their families, however, the field becomes particularly challenging. But such awkwardness must be overcome because sex really does matter and can have a huge influence on an individual’s life after brain injury. So says Rachel Lees, a specialist occupational therapist (OT) at Neural Pathways, which provides therapy and rehab services for people with neurological conditions. “It’s so important. Sex is a massive thing but as soon as you get to the topic, everyone panics and shys away from it. But it’s an important human need and part of helping people get back their quality of life. “As OTs we look at everything holistically. We have a duty of care to support the client if they want to get into a new relationship or need help with an existing one as it’s such a huge part of anyone’s life.” The impact of sex and intimate relationships on any individual extends far beyond the bedroom walls; for brain-injured adults in rehab, failing to meet these basic desires can be hugely disruptive to their recovery. Lees says: “I had a client who was getting really down because he wanted companionship – a relationship and everything that comes along with that. “It was impacting on his performance in other areas of his rehab. Because he was feeling low
and had self-esteem issues, he was getting frustrated and agitated. “Not having sexual and relationship needs met might increase frustration and anxiety and affect self-esteem. It really can affect everything.” As well as helping clients address sexual and relationship needs, OTs in multidisciplinary teams are key in assessing whether they have capacity to consent to relationships. Part of this involves considering how sex or a relationship would impact on the rest of their rehab. As an OT, Lees has never been involved in facilitating a brain-injured client’s visit to a sex worker or escort. She has, however, helped them to overcome the anxiety that might precede a planned sexual encounter. A crucial part of her role is helping clients deal with behavioural changes that can affect relationships. “After a brain injury, sexual and social disinhibitions rise quite commonly and people can become more inappropriate. They may have never said anything inappropriate before their injury but now they just can’t filter it out.” This can cause obvious problems in marriages and other relationships that pre-dated the injury. “Their partner could be embarrassed by their behaviour. For example, I had a client who was out with his wife and paid attention to, and made a comment about, another woman’s breasts. So it can be a bit embarrassing.” Similar challenges occur when single clients attempt to navigate the dating game in an age
of Tinder and other instantly accessible apps. “They may need support workers to act as the filter they no longer have or be that person looking over their shoulder who says: ‘Do you think that’s an appropriate thing to say? How can we make it more appropriate?’” While sex and relationships influence an individual’s overall wellbeing, they can also be a useful area in which to hone problemsolving skills. Even the mere process of going on a date can involve numerous tasks that may be highly challenging for a person with cognitive difficulties. Overcoming them with the help of the OT can be an important part of rehab. “A lot of clients don’t have the skills to use computers because of their cognitive impairments. They go online and struggle to write information about themselves – so they struggle in terms of putting a dating profile together and we can work on their computer skills.
They may have never said anything inappropriate before their injury but now they just can’t filter it out
“Then, if they are going out for a date, do they need support to attend it? How do they budget for the date? What would they wear? There is a whole list of things we could get involved in as an OT as part of their rehab programme. We often look at pros and cons of different options and then seek a solution to each problem.” Find this feature online at nrtimes.co.uk for links to useful resources on sex after brain injury.
Masters of the mainstream Consumer gadgets are now dramatically improving life after severe injury, with a bit of clever tinkering. NR Times hears from two experts in getting mainstream technology working for disabled clients.
An IBM training manual from 1991 reads: “For people without disabilities, technology makes things easier. For people with disabilities, technology makes things possible.” But for a long time, much of the technology widely used by people with disabilities was distinct from the sleek gadgetry of the mainstream. Occupational therapist Keith Norman says: “It used to be that the only technology we would prescribe for people with disabilities would look odd. Other people would wonder ‘why has that person got that device?’ “But now, if someone’s using an iPad, no one even notices. We very much support the use of mainstream technology for clients for this reason; it gives them a sense of being able to do what everyone else is doing.” Norman represents Steve Wiseman Associates, which finds ways of getting technology working for people with disabilities. As he and company founder Steve Wiseman are explaining at a UK neuro-rehab event,
slick consumer devices are playing an evermore important role in serious injury rehabilitation. Like never before, mainstream technology is opening up new possibilities for people with brain and spinal injuries. And, with a few expert modifications – or even just a YouTube tutorial – its capabilities can be extended even further. Wiseman says: “It’s about stretching what the technology is designed to do. With an Amazon Echo smart speaker, for example, how can you tell Alexa to play the Rolling Stones if you can’t speak? There are communication devices which can be programmed to say things Alexa understands. Also, eye gaze technology can be used to select a cell on a screen, that will then speak to Alexa. “A lot of what is now called mainstream technology is actually quite cutting edge. Another example is Philips Hue lighting. Each bulb has a Wi-Fi chip that can be controlled by another device wirelessly. This could be a handheld controller or eye
gaze, but it could also be directly controlled through Alexa.” Nadia’s story shows just how transformative mainstream technology can be with her own will power and some expert intervention. She became paralysed from the neck down, except for some finger movement, after a neurological injury caused by infection. Cognitively and verbally she remains very adept, however. Norman says: “There were a number of things she wanted to achieve; to send emails, engage with her friends on social media and to play music in her room. She is also a massive Netflix fan. These presented some interesting challenges.” Nadia already had an Amazon smart speaker and Google’s equivalent, the Home Hub. “We also brought in the Harmony Hub, a device which enables you to download the codes from various remote controls. It can then be controlled via commands to the smart speaker to operate the TV.” Nadia also trialled Chromecast, a dongle which allows anything being watched on a
phone to be streamed simultaneously on TV. But perhaps her most empowering technology tool was the dictation and speech recognition software Dragon NaturallySpeaking. Via a laptop, this gave her the ability to use Netflix and social media and to send and read emails. As well as dictating speech, the programme can be used to control computer functions and navigate apps. It takes perseverance to master, with an array of commands to learn, but Nadia got to grips with it quickly. Choosing what to watch involved several steps including “press page down” to scroll through programmes, “click link” to highlight all the links on the page and “choose x” to pick the desired programme. “She’s now able to manage many of her own affairs,” says Wiseman. “The key to success with Nadia was that she had very clear goals and was very motivated, as were the people around her.” For six-year-old Sophie, meanwhile, technology provided a gradual increase in independence. She was in a road traffic collision at just 20 months old and suffered orthopaedic injuries and a severe traumatic brain injury. Today she is a wheelchair user and, although able to vocalise sounds, has no speech. She also has complex epilepsy and limited trunk,
head and limb control. Wiseman says: “First we introduced eye gaze, which enables the moving of a cursor around a screen using eyes only.” Video footage shows Sophie directing a sparkling trail across a screen by moving her eyes. “Once you get more advanced there are various ways of clicking on something you have selected, such as dwelling on the item. “It is specialist but is becoming mainstream, particularly among gamers. This is great because, while the eye gaze unit on Sophie’s computer cost around £1500, gaming ones are available for £140 and they do most of what the specialist eye gaze unit does.” Having seen eye gaze in action, Sophie’s parents were keen to build on her progress to give her more independence. “They wanted her to be able to control her bedroom lights so we used the Philips Hue system. We enabled her to control the lights from a computer; when she looked at a colour on the screen, the light would change to that colour. "A decision was also made in conjunction with the speech and language therapist to make the system say ‘turn on the green light’, for example, to reinforce it. So, she’s looking at the colour, hearing the command and seeing the light change.”
Alexa was also ushered into Sophie’s world, giving her more control over the environment around her. The smart speaker was paired up with a Philips Hue Go – a chargeable, portable light resembling a soup bowl in shape and able to change colours, flash and even provide a strobe effect. On Sophie’s computer screen, different cells activated by eye gaze triggered audio recordings from her mum. As well as instructions to Alexa to control the light, Sophie could “play some funky music”. The computer, Alexa and the light combined to let Sophie enjoy the music she loves in her own bedroom, as any other little girl would. “The beauty of this system is that Sophie’s cousins and other family members can join in. They can talk to Alexa without using the eye gaze and the whole thing is participatory. “Of course, this is a multidisciplinary process. All of this requires input from other members of the team. For example, Sophie had issues with head control so the physio was very involved [with the eye gaze setup], as well as the speech and language therapist in terms of what the computer should say for a particular cell.” Sophie’s case underlines mainstream tech’s ability to mitigate profound challenges. But, as Wiseman explained, simplicity is often the
Video footage shows Sophie directing a sparkling trail across a screen by moving her eyes
key to solving problems, rather than relying on the very latest innovation. For instance, a disabled child once needed easy access to an iPad to entertain him on a long flight. Norman’s solution involved a camera tripod and the occupational therapist’s close ally, the Velcro strap. Another assignment saw Wiseman and co put a dancing Peppa Pig robot under the knife. Pressing its nose to activate sound and movement proved too tricky for a young client. They rewired it to a big red button which gave the child the same reward for her effort as an able bodied child. In fact, such wired-in controls are useful for many client tasks and can be adapted for various devices. A client unable to move a mouse or touch a screen, could potentially manage a joystick. Failing that, buttons or switches could possibly be harnessed. Wiseman says: “On Netflix, for example, instead of saying ‘number two’ to choose a programme with Dragon, you could use a switch to select it. Every time you hit a switch, you get what you want.
Legal view By Fran Mayes Lead Partner for Personal Injury in the Irwin Mitchell Newcastle office. Recent years have brought rapid improvements in the capabilities of mainstream technology, which is available at a much lower cost than previously.
“We find that most of these mouse emulation methods work best with the Windows operating system. "Also, Windows computers have USB ports, unlike tablets and some Apple laptops, and you usually still have to be able to plug something in to make things work.” As the interconnectivity of everyday devices improves, wires and ports may become less important in the future – assuming the ‘internet of things’ revolution is as rapid as experts predict. For now, there is plenty more existing mainstream technology for Wiseman and Norman to tap into for their clients. The gaming world offers particularly rich pickings, both as entertainment and in the pursuit of greater independence. “Games have an element of purpose and can motivate you to do something that could develop skills that translate elsewhere,” says Norman. “They can develop concentration, anticipation, timing, turn taking, problem solving and motor control. Also, they are highly motivating.” Titles benefitting his clients currently
include Hill Climb Racing, a simple-butaddictive driving game where players must go as far as they can without flipping their car over. It is built around two controls – ‘brake’ and ‘gas’ – and is therefore ripe for tweaking by the technology experts. Eye gaze, basic switches and other userfriendly control methods are well suited to such games where the number of possible inputs is limited. Older players yearning for something slower paced but equally addictive, may enjoy certain golf titles, says Norman. “Again, various modifications can be made using relatively cheap and robust technology to control variables like swing power and direction. “It’s important to match the right game to the right person, considering their physical, mental, cognitive and attention skills,” he says.
NR Times attended Steve Wiseman Associates’ talk at an event for neurorehabilitation professionals hosted by Irwin Mitchell Solicitors in Newcastle.
Mainstream technology is also becoming increasingly accessible to people with disabilities. This enables clients to become more engaged with technology and, because these devices and platforms are used by their friends and loved ones and not distinctly specialist to their disabilities, they may feel more motivated to use them; and in turn feel the many benefits of that. An overriding message from technology experts in the field is ‘the earlier the better’ in terms of engaging in technology to improve the individual’s outlook, quality of life and opportunities. From a legal perspective in the aftermath of an acquired brain injury, this means ensuring funding is available at the earliest possible stage to make sure a comprehensive multidisciplinary team (MDT) can be put in place.
Crucially, the MDT should be backed up by a specialist in technology who can advise on the equipment needed to support progress. Overall, these specialists have an important role to play in assisting rehabilitation professionals within the MDT as they work towards maximising the opportunities available to the client, their outlook and their quality of life. As we have heard from Steve and Keith, mainstream technology certainly has the power to achieve all of these goals, especially when expert intervention is applied to simplify and speed up processes and controls. With mainstream technology continuing to advance at lightning speed, its influence on the recovery journeys of severely injured clients looks certain to grow in coming years.
of traumatic brain injurY
Dr Julian Harris, of the National Neurological Rehabilitation Chambers, on the vital classification process that shapes treatments and outcomes after brain injury. We often use the terms “concussion” and “mild” or “minor” head or brain injury, synonymously; and read “moderate”, “severe” and, more recently, “very severe” brain injury in medical records. When used appropriately these terms convey information about the clinical presentation, especially in the hours and days following a brain injury. This information helps us to predict overall outcomes, and informs opinions on prognosis. The most widely used definitions are shown in table A. Sometimes it is more useful to consider a TBI according to anatomy and pathology. To do this we must first understand some basic principles of brain structure and function.
Classification of TBI
Glasgow Coma Scale
Many functions of the brain, those controlling speech and vision for example, are performed almost exclusively within discrete regions of the brain. Other tasks are governed by several regions of the brain working together (walking for example), whereas other still more complex skills are managed by entire regions of the brain (higher executive, thinking, remembering, comparing, learning, and drawing conclusions). Diagram A demonstrates the anatomical lobes, but do not be misled – full brain function relies as much on interaction between brain regions as it does on the performance of each part. We are only now coming to understand the implications of ‘connectomes’. Below right is an image created by diffusion spectral imaging, revealing the white matter fibre architecture of the brain. The fibres are color-coded by direction: red = left-right, green = anterior-posterior, blue = up-down. With an understanding both of the most important brain regions, and also of the interconnectedness of the brain, we can better appreciate and even predict the kinds of impairments that someone will experience depending on how and where the brain injury occurs.
Duration of loss of
Duration of Post-Traumatic
13 – 15
9 – 12
30 mins – 24hrs
1- 7 days
Severe (and very severe)
> 7 days
• The relatively new category of “very severe” injury is defined by a period of lost consciousness of 48 hours or
• PTA = “time from injury to consistently following commands”, or “duration of permanently lost memory”.
• The longer the length of coma and PTA, the poorer the outcome will be.
See page 27 for more on PTA.
more, or a period of PTA of 7 days or more.
Energy and Injury Mechanisms Direct trauma causes immediate physical damage to the brain of two kinds: o Focal, at the primary point of impact, possibly with â€œcontra-coup" features, and penetrating injury (gunshot, shrapnel). o Diffuse axonal injury (DAI), whereby the momentum of the head and brain become blunt trauma, specifically: o acceleration/deceleration o rotational forces o shearing neuronal connections and causing micro-haemorrhages Considering these two categories of injury in more detail, in a high-impact focal injury:
o The brain hits the rough surfaces on the inside of the skull. o Penetrating or depressed skull fractures cause more brain damage. o Typically the frontal, anterior temporal regions are hardest hit â€“ on the windscreen or steering wheel. By contrast, in diffuse axonal injury the brain is shaken up from the high (momentum) energy, typically acceleration-deceleration energy and rotational forces. o The entire brain is injured, including corpus callosum, midline, walls of third ventricle, and the brain stem (this causes loss of consciousness). o blood flow to the brain drops, causing Ischaemia, vasoconstriction, edema (swelling), and microscopic haemorrhages.
Finally, what is post concussion syndrome (PCS)? This term has become more widely used as we gain a better understanding of impairments that persist long after evidence of gross anatomical damage has resolved.
The findings of PCS are very real, and often extremely debilitating. Recent developments in imaging suggest that the cause is primarily at the level of lost inter-connectivity of brain regions. Some common features include: Physical symptoms: o Headache - the most common symptom o Dizziness, often accompanied by a spinning sensation (vertigo) o A feeling of sickness (nausea) o Double, or blurred, vision o Hearing loss and/or a ringing noise in the ears (tinnitus) o Reduced sense of smell and taste o Problems tolerating bright light / loud noise Emotional and behavioural symptoms: o Being easily irritable and sometimes aggressive o Feeling anxious easily o Depression o Having disturbed sleep and feeling tired o Reduced sex drive o Changes in your appetite o Personality changes, eg. showing socially or sexually inappropriate behaviour o A lack of energy and interest in things o Having sudden outbursts of emotion - for example, sudden crying or laughing episodes Problems with mental processes (called cognitive symptoms): o Difficulty remembering things o Concentration and attention problems o Slowed reaction times o Problems processing information and problems reasoning o Difficulty learning new things
Suggested Reading Classification and Assessment: o Sherer M, Struchen MA, Yablon SA, Wang Y, Nick TG (2008) Comparison of indices of traumatic brain injury severity: Glasgow Coma Scale, length of coma and post-traumatic amnesia. J Neurol Neurosurg Psychiatry 79: 678-685. o NICE 2003: National Institute for Clinical Excellence. Head Injury: triage, assessment, investigation and early management of head injury in infants, children and adults. London: National Institute for Clinical Excellence. o Smith-Seemiller L, Fow N, Kant R, Franzen M (2003) Presence of post-concussion syndrome symptoms in patients with chronic pain vs mild traumatic brain injury. Brain Injury 17: 199-206. Treatment/resources o The Brain Injury Workbook: Exercises for Cognitive Rehabilitation (Speechmark Practical Therapy Manual) Paperback â€“ 28 Mar 2013, and o Head Injury: A Practical Guide (Speechmark Editions) Paperback â€“ 6 Feb 2004 both by Trevor Powell (Author) o Headway: https://www.headway.org.uk/about-brain-injury/ For more neuro-rehab study guides from NNRC visit www.nnrc.org.uk. 50
why the arni way is up 52
Dr Tom Balchin has spent the last 18 years getting tough on problems caused by stroke. His creative system to help people regain independence, which includes strength training and martial artsderived movements, has emerged as a valuable addition to the evidence base, as NR Times reports.
Dr Tom Balchin’s mission to help UK stroke survivors was forged in tragedy. In late 1996, his twin brother Alex died aged 21 after falling from a building during a night out in London. Three months later Tom suffered a serious subarachnoid haemorrhage stroke, which he believes may indeed have been triggered by the stress of losing his sibling. “I wasn’t coping very well before the stroke and there was a lot of grief I just couldn’t get out,” he says. He was initially paralysed down his left side and weighed just nine stone when he left hospital in a wheelchair six months later. His journey to independence taught him a lot about what really works in rehab; and shaped the ARNI Institute, which has helped thousands of stroke survivors since Tom founded it in 2002. “I wanted to get out of hospital as soon as I could and I just went for it. I got hardcore about it! At home, I remember hauling myself upstairs on my behind, step by step, to prove that I didn’t need a stairlift. “I used combinations of all sorts of exercises I found for myself, including piano finger playing exercises – but the best thing in those early days was to try to get back to my DJ decks, put my paretic hand on the platter and try and move it back and forward, beat matching. I even turned the decks backwards initially, before my fingertips were able to grip into the grooves of a record, and made special surfaces for records which assisted my fingers and thumb to move where I wanted them to go. The headphone was held on the side of my brain which had suffered the stroke. I progressed to being able to control the cross-fader, equalisers and samplers, take records out of and back into sleeves with my good arm and hand. It was intensive… at least four hours per day, for a number of years. The other big thing was that I was evaluating my performance in relation to my action control each time by recording what I was doing. I made some terrible tapes! “I would encourage anyone with spasticity in their upper limbs to consider this kind, or any kind, of intensive dosage of fun ‘hobby’type training. It’s very hard for patients to find the right thing to do, but anything they can do to ramp up the number of hours of
rehabilitation, the better. “Back then there was nobody around to tell you not to do something, which was good, in a way. I had to innovate. Over the last 18 years or so, I’ve seen patients time and time again being told not to move for fear of doing bad movement. But in most areas, particularly lower limb rehab, this is wrong and out-of-date” ARNI – or Action for Rehabilitation from Neurological Injury - works with stroke survivors “stuck in limbo” after their therapy programme ends. Via a network of specialist instructors and therapists across the UK, they learn ARNI’s functional “retraining” strategies aimed at enabling them to take charge of their own recovery. It offers intensive one-to-one sessions in the home, some group classes and training manuals and DVDs which encourage stroke survivors to continually work on their rehabilitation. Classes are paid for by the client, although often at a reduced rate. Balchin, however, has always been a volunteer in his own charity and has never taken any payment for his input. The programme is designed to speed clients from the stage where an NHS therapist becomes unavailable, to making recommended activities part of their daily life as they work towards more independence. Its therapists and professional instructors meet the standards of the Stroke-Specific Education Framework. Clinical Commissioning Groups and charitable and local authorities provide communitybased ARNI training for stroke survivors, which has been positively received. The approach is now the adopted model for combined rehab and exercise after stroke for a number of UK areas. “My big mission when I launched ARNI in 2002 was to get one ARNI qualified, appropriately insured and DBS-checked trainer within five miles of every stroke survivor who needed help, wherever that was in the country. I now have about 120 trainers on the books and am almost there. We haven’t quite got to everyone yet, but we’re getting there.” Stroke survivors on the ARNI programme are matched with personal trainers and
The best thing in those early days was getting my DJ decks out and moving them back and forward, beat matching
physical therapists; their focus is on helping people with partial paralysis to make as full a recovery as possible. Results are achieved through various activities, including education in exercise principles after stroke and the establishment of an independent home-based exercise programme. ARNI also develops skills in goal setting, functional problem solving and selfmonitoring. It is a personalised programme, with substantial one-to-one training to ensure individual tailoring of activities, feedback and progression, and encouragement to work “at the edge of personal capacity”. The approach has become increasingly well evidenced since 2007. In one small study, reported at the World Stroke Congress, involving 24 stroke survivors at the ARNI stroke gym at Chaul End Centre in Luton in 2011/12, participants reported improved mobility, range of movement, fatigue and confidence. Service audit data reported 24 ambulance call-outs for fallers during the year preceding intervention. In the year of the intervention there were zero call outs, with an ambulance service saving of £7,200. This particular statistic was mirrored the following year. Further savings of £5,482 came from the reduction in care packages, nursing input, catheter care, respite care, appliance support and medications. Another small-scale study in 2014, supported by the NHS and the charity Different Strokes, revealed that all participants showed ARNI-powered improvements over a span of clinical measures. A number of bigger randomised controlled trials have been undertaken, including one supported by Stroke Association, entitled ‘Retrain’. This was conducted by the University of Exeter and published in 2017. It involved 45 patients and showed that ARNI is feasible, acceptable and safe. It also showed that key techniques involved in it could successfully support patients with one-sided loss, including those with multiple comorbidities (eg with lower limb amputation).
I still train all the time as it’s the only way to stave off limitations from stroke; and I’m still dealing with drop foot
This year, an upper limb research study is taking place at Brighton and Sussex Medical School, looking at the efficacy of use of ARNI upper limb task training by patients and families in the clinic. The ARNI programme involves task-specific functional movement training, development of physical management strategies, strokespecific resistance training with adjuncts such as technology and pharmacological inputs recommended as appropriate. It was borne out of Balchin’s own rehab experience. He credits part of his success to an “innovative” physio who, in the early days after his stroke, taught him the importance of regaining selfreliance as quickly as possible. Martial arts were also hugely influential. Despite the remnants of partial paralysis on one side, he powered through the coloured belt classes of aikido, karate, taekwondo and hapkido in the years after his stroke. He also learned Teukgong Moosool, the official martial art of South Korea’s special forces. In 2008, he was awarded the grade of 3rd Dan by Grand Master Lee (8th Dan), Head Grand Master of the International Teukgong Moosool Federation. Balchin also became a serious power-lifter
and strength athlete, regularly working with non-stroke trainees. He added strength training into the mix from the initiation of his project for stroke survivors, at a time when the majority of UK therapists were not introducing it for fear that it would exacerbate tone. It was difficult to find the evidence for strength training for stroke in the very early days, he says, but eventually did, academically justifying his project and implementing it successfully. He honed his mental strength and capacity after his stroke too. He went back to university to finish his first degree and then taught for two years in a primary school. He then went on to complete a masters degree and Phd and spent three years as a research fellow/lecturer in gifted education at Brunel University, London. Following that, he worked as an MA course leader in gifted education at Reading University. He says: “Through my training, I regained nearly all my functional movement, and continued to perfect it twenty years later using ARNI-developed techniques. “I still train all the time as it’s the only way to stave off limitations from stroke; and I’m still dealing with drop foot. “The biggest weapon you already have on your side is definitely neuroplasticity. I learned that from Professor Nick Ward who runs the UK’s first specialist upper limb clinic. A very early supporter of ARNI, he helps me run the ARNI functional rehabilitation course for therapists and trainers.” In the case of stroke, brain plasticity could allow certain lost functions, such as speech and language, to re-emerge as the result of intensive rehab. The ARNI system contains techniques designed to prime the body for task-related practice. Often, therapists help stroke survivors to get to their feet and walk again after brain injury and many achieve great successes in the very short time they have to work with them in the acute/chronic stages. However, ARNI works with many stroke survivors who find it hard to move on from sticks, orthotics and other aids to functional movement. Many feel they could achieve
better function in their weaker hand, for example, if given a chance to do so by an ARNI instructor. The benefits of rigorous training beyond the standard allocation of post-stroke therapy sessions are wide ranging, according to ARNI. They include balance and posture correction, improved timing, better flexibility and greater muscular, tendon and ligament strength. These in turn can boost self-sufficiency, confidence, self-esteem and productivity in employment or hobbies. In ARNI’s case, clients are encouraged to work “on the edges” of their current ability to stimulate maximum neuroplasticity. Instructors teach progressively more advanced exercises. A core part of the ARNI approach is to teach clients how to cope with falls; the most dangerous part of the balance problems caused by stroke.
Trainees (many of whom have the functional use of just one arm) learn how to get down to, and up from, the floor without any kind of external support to pull themselves up with. They also learn other innovative strategies such as turning, step and ramp navigation and emergency action techniques. Balchin also teaches what he calls "gait-tactics". Upper limb retraining is a large part of the syllabus, with no coping or compensation allowed for the patients in this area: they are taught creative stretches to access, and then extend time, on discreet and progressive tasks, with spasticity decline being a focus. “You have to develop strategies that are workable for the individual. You can give them the tools they need but clients need to be able to personalise them. Also, a key to good recoveries that I worked out straight away is that you can’t tell people they can’t do things.
INPA is a membership organisation for independent providers who specialise in neurorehabilitation our members provide over half of the brain injury rehabilitation in the UK.
That’s absolutely critical.” Balchin believes the rise of ARNI is timely, given current trends in UK healthcare. He points to the “sad fact” that effective rehab is generally unavailable from the NHS once sufficient movement to simply get around has been achieved. At the same time, neurophysio and occupational therapy services are stretched, he says, while he believes stroke classes that promote active task-related functional movement and resistance training are non-existent. “Most physical after-stroke classes that do exist are fitness-focused and many attendees report that these are, in conclusion, unable to provide them with the specific and custom tools they need to rehabilitate functional limitations or effectively cope with the rigours of their daily lives.
Setting standards for neurorehabilitation Developing focused training programmes Organising collaborative research
Representing providers of:
• Neurorehabilitation • Neurobehavioural rehabilitation • Spinal rehabilitation • Treatment for those detained under the Mental Health Act 2007 • Specialist nursing including nursing for ventilated patients • Respite • Community services • Day care
What we do:
• Raise the profile of independent providers within UK neurorehabilitation. • Provide a collective voice for members in the media and to inform policy. • Make recommendations to industry. • Run a recognised training programme for rehabilitation assistants. • Carry out research into the collective results of our work. • Ensure members adhere to a set of recognised standards.
"This is especially the case if extra problems persist such as epilepsy, aphasia or fatigue. Most report that they need external help to guide balance control or spasticity decline for example, but that their essential cardio fitness can, in the end, be done better at home." Meanwhile, global research findings have backed up the ARNI way for years, he believes. Home visits and outpatient exercise programmes have been shown to improve gait speed. Research into ARNI techniques show that in a number of activities, performance is retained and built upon. Balchin cites the example of the Dutch researchers Kollen, Kwakkel & Lindeman who, in 2006, reviewed all available published, clinical stroke rehabilitation trials, of which at the time there were 735. They selected 151 studies including 123 randomised controlled trials and 28 controlled clinical trials. The rest did not meet the inclusion criteria as they lacked quality or statistical validity. They wrote: “Traditional treatment approaches induce improvements that are confined to impairment level only and do not generalise to a functional improvement level”. In contrast, they stated that: “More recently developed treatment strategies that incorporate compensation strategies with a strong emphasis on functional training, may hold the key to optimal stroke rehabilitation." In summing up their findings, they reported that “intensity and task-specific exercise therapy are important components of such an approach”. Balchin says: “There is a good range of interventions with strong evidence of both efficacy and effectiveness now. Cochrane reviews have found that electromechanical gait training, treadmill training, circuit training, physical fitness training, repetitive task training, CIMT, mirror therapy and FES are also effective. “You’ll notice that all of these interventions require that you DO something. So many stroke survivors do what is essentially a homeopathic dose of what is required to recover well.” The delivery of ARNI’s services usually relies on the goodwill of others. While individuals pay for one-to-one sessions, the session costs are low – around £45 to £55 an hour.
The charity’s overheads are partly covered by physios paying to become qualified trainers and serious rehab training sessions at ARNI’s headquarters in Lingfield, Surrey. The charity also gives full bursaries to students and runs a trainer sponsorship programme which enables any organisation, family or carer to sponsor an instructor through the ARNI qualification. The course fee is partly paid back by the instructor in the form of free lessons to the survivor. The charity also often gives away helpful material such as copies of The Stroke Survivor Manual and its stroke survivor DVD set. “It’s a fact that a lot of stroke survivors just don’t know what to do when their clinical physio ends because they haven’t been set up properly to do better. What they probably need is an evidence-based, innovative and personalised programme of training
strategies, a low-cost means of trainer or therapy support as they do it and to be guided to access helpful local community services or other specialist services. It’s really important that survivors are guided to autonomous retraining efforts if possible, in order that they may fulfil goals and thrive rather than decline, become dependent on others or just re-enter the care pathway. This is really hard to achieve, but one by one, over the years, ARNI has helped a vast amount of people. I’m proud of this and of the way that, by its sincere efforts, ARNI has gained the trust and support of professionals in neurorehabilitation over the years.” Balchin describes the charity as his life’s works and passion. "Stroke has driven me to get better, and it continues to drive me to make the effort to help people affected by stroke to do better," he says.
e : ki ot ic yn r V Ke sso rson e of de Pr An
The Children’s Trust National Paediatric Brain Injury Conference Friday 6 September 2019 The Royal Society of Medicine, London ‘Building the future of childhood brain injury: where do we go from here?’ will take a visionary look at paediatric acquired brain injury and explore what the future may hold. Bringing together the industry’s leading clinical professionals, delegates can listen to and network with experts including consultants, doctors, surgeons, nurses, and therapists, alongside case managers and medico-legal individuals. This conference is a not-to-be-missed event for healthcare and associated professionals working in this field. Speakers include: Professor Vicki Anderson, Director, Clinical Sciences Research, Murdoch Children’s Research Institute, Australia Dr Stacy Suskauer, Research Scientist and Co-director of the Centre for Brain Injury Recovery, Kennedy Krieger Institute, USA Dr Suzanna Watson, Consultant Clinical Psychologist and Lead for Paediatric Neuropsychology Services, Cambridge and Peterborough NHS Foundation Trust Other exciting speakers to be announced shortly.
Book early to avoid disappointment - early bird offer ends 15 April. For information and to book your tickets, please contact us: thechildrenstrust.org.uk/conference email@example.com Pending RCPCH and APIL accreditation. Registered Charity No. 288018. TCT_446 February 2019.
Delivered in partnership with
does kindness conquer all?
Putting compassion at the heart of rehab is no mushy concept; it is increasingly yielding better outcomes for patients, including those with brain injuries. Andrew Mernin meets clinical psychologist Emma Ferguson to find out more about compassion-focused therapy. In these emotionally enlightened times, some say the world’s gone soft. Feelings beat facts, offense is derived from almost anything and parental mollycoddling has hit record levels. To the uninitiated, then, the idea of ‘compassion-focused therapy (CFT)’ might sound like yet another sign of barmy snowflakery. But as growing numbers of psychotherapists are proving, it is, in fact, emerging as a highly effective approach in post-brain injury rehab. CFT was conceived by Paul Gilbert, a worldrenowned clinical psychologist who founded the Compassionate Mind Foundation in 2006; and published 'The Compassionate Mind: A New Approach to Life's Challenges and Overcoming Depression' in 2009. It brings together cognitive behavioural therapy (CBT) techniques, neuroscience, evolutionary and social psychology and even Buddhist teachings. Recipients are encouraged to be compassionate toward themselves and other people – and to understand basic emotional regulation systems and the importance of bringing them into balance. A key concern, says Gilbert, is “to help people develop and work with experiences of inner warmth, safeness and soothing, via compassion and self-compassion.” A study led by Fiona Ashworth, representing Anglia Ruskin University, exploring CFT in acquired brain injury (ABI) patients was published last year. In it, 12 patients received a combination of CFT group and individual intervention. Self-report measures of self-criticism, self-reassurance and symptoms of anxiety and depression were collected and analysed before and after the programme. CFT was associated with significant reductions in measures of self-criticism, anxiety and depression, while the ability to
reassure the self increased. It summarised that CFT is “well accepted in ABI survivors” within the context of neurorehab. Also, the report concluded: “The results indicate that further research into CFT for psychological problems after ABI is needed and there may be key aspects which are specific to CFT intervention, which could reduce psychological difficulties after ABI.” Dr Emma Ferguson (pictured), a Health and Care Professions Council-registered clinical psychologist at Neurolink Psychology, has also been actively exploring CFT’s potential for people with neurological challenges. Her recent case study, 'How CFT can tackle CBT’s limitations after brain injury', applied the therapy to a 35-year-old man who suffered a traumatic brain injury in a road accident. She showed how: “Integrating a CFT approach into a CBT framework had a successful outcome.” The man had difficulties with memory, processing speed, generating ideas and regulating his emotions. He also had anxiety and low confidence after the injury. After the CBT treatment he said: “I automatically talk to myself in a warmer, softer voice… I’m occasionally anxious but I’m actively working to minimise [its] effects on my life.” He also managed to return to work, get married and have a son.
An important aspect of CFT is the ‘three circles’ model. This separates the three emotional regulation systems of threat (depicted as a red circle), drive (a blue circle) and soothing (a green circle). Ferguson says: “After a brain injury, people are often operating in ‘threat’. They are doing things to replace the feeling of being threatened. Perhaps they can’t do things they used to do and that threat system may be necessary from a ‘fight or flight’ perspective. But their threat system could be overactive. Maybe they are constantly in a state of negative emotions such as fear, anger and self-criticism. CFT could help them to notice that happening and encourage the client to operate from a different system, perhaps moving to green to calm their threat system down.” Engaging the drive system as clients pursue goals can also be problematic, she says. “Sometimes goals come from a position of threat. For example, they may think ‘oh no, I can’t do these things, my goal is to do them how I used to’. This might lead to them going into overdrive, trying to keep going on as they did before the injury, regardless of fatigue or cognitive difficulties. “We try to help them come up with goals that are more from a green, soothing place. It’s about being kinder to yourself in your goal-setting.” The individual in Ferguson’s recent paper underwent this shift, with CFT enabling him to move away from aspirations that were doomed to fail. “Prior to his injury, he was very focused on his career as a research fellow. His main focus was to go back to work full-time, with no changes at all to his work situation. The difficulty was that he was getting quite fatigued and anxious and he needed more time to process things. One of his jobs was to review papers but he needed a lot more time
It could mean being more accepting of the fact that you might need to do things in a completely different way to achieve the same goal
than previously to complete these tasks. “We were concerned that he might fail and this could have a huge impact on his selfconfidence and emotionally.” The prospect of following a gradual path back to work was not hugely motivational to the man, however, until CFT and its ‘three circles’ notion was introduced. “He was able to be more compassionate towards himself rather than beating himself up for not being able to do things.” Ferguson stresses that CFT is not about lowering client expectations, but rather encouraging them to be kinder to themselves. “It could mean being more accepting of the fact that you might need to do things in a completely different way to achieve the same goal. It’s about doing things from a place of kindness and soothing, instead of fear and an attitude of ‘I can’t do this so I need to work as hard as I can until I burn out’ – which we see quite often in clients that are desperate to get back to where they were.” CFT sessions can involve many different approaches and techniques. Typically they may focus on self-soothing skills, increasing distress tolerance, fostering the compassionate self and identifying the self-critic. On the latter, Ferguson says: “One of the key parts of CFT is thinking about the role selfcriticism might be playing in maintaining the individual’s distress. Sometime we encourage clients to identify who or what their self critic is, to externalise it from them. It may remind them of, or sound like, someone such as a parent or an old teacher. We use a lot of imagery to visualise it as a something that pops up and says things like ‘I can’t do it’ and ‘I’m rubbish’ and is activating the threat system. “Brain injury or no brain injury, we can all identify with the idea of a self-critic who’s there internally some of the time. “A prevalent feeling is that self-criticism is a necessary part of being productive. The idea that ‘if I don’t tell myself off, I won’t get things done’ is very common. But, actually, you don’t need to criticise yourself as a motivator to achieve things. You can be compassionate towards yourself and still keep pushing towards goals or changing things about life that aren’t working for you.” As well as using CFT to help patients in rehab,
it might also have implications for healthcare workers themselves, according to various research papers on the impact of compassion training. One study (Beaumont et al, 2016) - involving 28 healthcare staff, including counsellors and psychotherapists – measured self-compassion, criticism, persecution and correction before and after they underwent CFT training. The results generally showed an increase in self-compassion and a reduction in self-critical judgment after the training. It concluded: “Developing self-compassion and compassionately responding to our own self-critic may lead the way forward in the development of more compassionate care among healthcare professionals. Training people in compassion-based exercises may bring changes in levels of self-compassion and self-critical judgment. The findings are exciting in that they suggest the potential benefits of training healthcare providers and educators in compassion-focused practices.” Ferguson agrees that CFT has potential in helping healthcare professionals. “We are considering using CFT training in the staff teams we work with. It’s a therapy that could be used one-to-one or in a group setting to support staff in coping with the work they are doing.” The outlook for CFT as a means of aiding the recovery of brain injury survivors looks promising. The British Psychological Society has an upcoming, two-day event in London purely focused on CFT in neuropsychological rehabilitation. Its neuropsychology division, which is organising the event, says: “Many neuropsychologists working in rehabilitation have found that CFT is a very useful model in helping their patients and clients. There is a growing number of us that are passionate about applying this model in our work settings but also in better understanding ourselves as humans with the same ‘tricky’ brains.” Such events highlight CFT’s emergence as a useful approach after brain injury. And Ferguson is hopeful that more and more practitioners will consider it in future. “There is no reference to CFT in NICE guidelines and, generally, CBT tends to be held up as the gold standard for most mental health, post-brain injury problems. But there is also a growing acceptance of
mindfulness and its use as part of CBT and other approaches; obviously mindfulness is also a big part of CFT in terms of the soothing element of it. “We are a long way off from large scale clinical trials into CFT but there is definitely growing interest in it among psychologists in the neuro-rehab world.” It may indeed take years for unshakeable evidence for CFT to build, but it certainly shows promise and is easily accessible to any psychologists keen to trial it with their clients. Ferguson says: “Psychologists working in neuro-rehab are used to adapting approaches to suit their clients – and actually there is a lack of evidence and guidance for brain injured populations for many of the standard therapy practises too. “We are continually adapting our materials and the structure of sessions, so CFT could be implemented alongside CBT, for example. “What really struck me from working with the client in my research was that he found CFT really easy to understand and it therefore stuck with him. People like things that are
There is definitely growing interest in this among psychologists in the neuro-rehab world
visual and simple to follow, like the red, blue and green hook that’s so easy to remember. “The use of imagery and the playful way the self-critic can be identified, means that it could also work well with children. CFT is already being used in schools to help people to develop emotional regulation skills from a younger age, so I don’t see why it couldn’t work with children and parents affected by brain injury. “Hopefully we will see more psychologists bringing elements of CFT into their sessions,” she adds.
A CRISIS IN
The UK needs a three-fold increase in neuro-rehab beds to meet demand, experts say. A major challenge in achieving this ambitious target is the ongoing care sector recruitment crisis. Deborah Johnson looks at the problems, solutions and outlook for recruitment and retention in neuro-rehab.
The recent report from the All Party Parliamentary Group (APPG) on Acquired Brain Injury (ABI) laid bare the scale of the work that must be done to ensure brain injury patients are properly cared for. To truly meet demand, it said, the UK needs 14,600 neuro-rehab, in-patient beds to meet an annual caseload of around 300,000 ABI admissions. Currently, there are just 4,600 beds nationwide. While this increase will undoubtedly add vital specialist resource to a sector which is badly in need, the report also acknowledged the growing shortage of neuro-rehab personnel. Although the recruitment of care professionals is a problem affecting the care industry as a whole, with an estimated 100,000 vacancies at any given time, it is particularly prevalent in roles involving patients with long-term care needs. Amid pressure to more than triple the amount of dedicated neuro-rehab beds, the necessity to address the root causes of the crisis and find a way forward is intensifying. Professionals point to the difficult nature of the job and poor pay that have long been the nature of many care roles as being an ongoing issue, particularly in the care of brain injury patients with their associated complex needs. The changing nature of society is also a key factor, with many young people reluctant to consider care as a career. Nicola Lowery is a specialist health and social care recruiter, who has worked in the industry since 2007. She has noticed a big change in the quality of candidates applying for roles. “Care work used to be staffed by genuine, passionate and supportive people. People who choose the job because they are naturally caring people. While there are still some absolute gems out there who see care work as a vocation rather than just a job, the ‘old school’ qualities are increasingly hard to come by among people coming into the profession. The pay is poor, the hours are long. It can be physically demanding, and often with high risk of violence and aggression, and it’s often thankless too,”
said Nicola, head of health and social care at Nineteen Recruitment Services. “Rates of pay continue to be pretty appalling, considering the nature of the work. I have seen candidates who administer life saving medication paid just above minimum wage. Staff who have been bitten, kicked, punched on a daily basis, all for minimum wage. “Care can be an easy job to get into due to providers’ constant ongoing need for staff, it often requires minimal education and qualifications and, as training and supervision will be provided on the job, experience is not always essential. This, however, can result in unsuitable people working in the sector; those who can't manage the challenges, or aren't necessarily genuinely passionate about supporting others. This results in high turnover and the process repeats.” Karolina Gerlich, chief executive and founding director of the National Association of Care and Support Workers (NACAS) agrees. Having worked as a care worker herself for the past nine years, she sees first-hand many of the issues, and has been critical of the current campaign by the Department for Health and Social Care for “sugar coating” the realities of care work. “I think retention is a bigger issue than recruitment. One of the most common problems faced is that often rotas aren’t feasible and people are told at short notice what hours they have to work, and holidays are taken away, which makes it difficult to have a life outside of work. One big problem is that new people constantly leave, there is a very high turnover of staff, and this puts pressure on the existing care workers. Plus, many people who have worked in social care for a long time are quitting because they burn out,” she said. “We need to make people aware of the job and not attempt to glamourise it, as people quickly realise that this is not the reality and there are hard times in this job. This is absolutely a job worth doing but we need to be be realistic. Care is an extremely valuable and important profession that can break your heart and body. The strength
We need to make people aware of the job and not attempt to glamourise it
of those who do this every day needs to be celebrated, but not sugar coated. “The new government campaign with its hashtag, #Everydayisdifferent, is a great banner under which to show the variety of tasks, skills, people and jobs that social care involves, but new recruits have to come to the industry with realistic expectations. The campaign seems to lack balance, creating misperceptions about the realities of the job. Many of the responses I have heard from care workers are about the fact that the role is not – despite what the campaign suggests – all about dancing, bird feeding and going out together. “Working in care is not seen as being glamorous in an age where young people want to be big social media stars. [TV journalist] Stacey Dooley recently made a documentary where five teenagers spent two days working in a care home for elderly people. They went in with the attitude that old people smell and are dying, but they finished their time there having really enjoyed their work, and that was very nice to see.” Angela Kerr (pictured), chair of the British Association of Brain Injury Case Managers (BABICM), also believes there is a big problem in the levels of young people wanting to come into the profession. “Currently, the younger generation are, by and large, no longer wanting to do jobs like working as a carer. The millennials, as they’re called, are setting their sights on higher paid jobs or particularly ones that involve media, so being on TV or YouTube or other social media,” she said. “I saw something that said this is now the career ambition of 70% of young people these days – their energies are going towards that rather than a career in care. When we are placing care roles, it is not generally young people who are filling these roles, it is the older people who have been in care for a long time. “Working with neuro patients can be very complex and is not attractive for everyone – it’s something you can do or you can’t, there seems to be no middle ground. You have to really engage your brain to deal with [the job] and have to be creative in the ways you do
things. It’s a more complex care role but is very rewarding, although it is challenging.” But with the pressure to create extra neurorehab beds, clearly this situation needs to change. The APPG report also highlighted the regional disparities in brain injury care provision, with some parts of the North, East and South West having little or no access to neuro-rehab services or specialist providers. Angela confirmed she and fellow BABICM members see this on the ground. “There is a big difference between regions, more people are now living in our cities and with those big populations of people it is more likely there will be people to fill vacancies in care. So, for example, in Birmingham or Manchester, the situation is easier than in say Lincolnshire or Derbyshire. I have a client in the Peak District who is having to look to Sheffield for recruitment, and even then the people we are finding are the older generation as there are few young people coming into care.” While much has been made of the likely impact of Brexit on the existing recruitment crisis, Angela believes this will not impact on specialist neuro care. “While Brexit might be blamed as having some role in the wider care recruitment situation, from a neuro carer or support worker point of view, so those who are working with people with quite complex communication problems, it won’t make as much difference,” she said. “Traditionally, this area of work has never fully utilised people with strong accents, such as from other European countries, as often they are working with people with quite complex communication problems. Unless their command of English is excellent and they know the fine details and nuances and they are clear and understandable, this would not be an area in which they would work. For that reason, it has never been common practice to recruit heavily from within European countries. So while the wider ‘crisis’ may be influenced by Brexit, within neuro it is a different situation.” While there is clearly a huge amount of work to do in regard to young people’s changing career choices, Nicola is seeing some positive trends among young graduates and
For those working with people with complex communication problems, Brexit won’t make as much difference
students wanting to go into care. “We have got some fantastic young people who want to work in care and specialist care, as a result of them studying in that area. They’re very passionate about it and they want to put into practice some of the qualities they’ve learned. Admittedly we don’t have a huge bank of young people coming through who are suitable for many of our vacancies, as, to many people, care is just a job, and once the reality of it kicks in they leave, or they contact us because the Job Centre told them they have to. But there are still some super young people out there with the right ethics and personalities who give me confidence,” she said. Angela, too, believes there is a place for graduates in helping to stem the recruitment crisis, as well as considering other more innovative ways of ensuring brain injury patients are supported. “It is very good that we have involvement from graduates, such as from psychology or occupational therapy, who are looking for
practical experience. I think that could have a growing role to play. It may not be a career choice, but they can have a big impact during their placements. While that is a short-term measure rather than a long-term solution, I do think closer working and links with universities will be increasingly important,” she said. “Going forward, while of course they can’t entirely replace the human contact and capability, we do need to make use of alternatives where we can. We use automation and AI like Alexa and Siri already, and the use of robots is also something we should explore further. Assistance dogs are incredible and are a huge support to people, as well as providing that nurturing contact, so they can play an increasing role too. We have to be innovative and creative in looking at solutions or part-solutions.” Karolina concluded: “Care staff’s hard work goes hand in hand with job satisfaction, the pride of making people smile and helping them live fulfilling lives - but the reality is
that there is a huge level of vacancies to fill and a lot of work to be done. It is a job in a sector desperate for more funding at every level of provision, as well as better training standards, pay and working conditions, so these are the fundamentals that need to be addressed.”
They can’t entirely replace human contact and capability, but we do need to make use of alternatives where we can
Despite staff shortages in the care sector, people power has enabled rapid growth at Exemplar Health Care in recent years. Here Lynne Waters, HR director, shares the complex care provider’s retention and recruitment secrets. Our focus as an organisation is on striving to deliver the highest quality of care; and central to this is what we call a ‘Our People Plan’, rather than an HR strategy. This puts people at the heart of everything we do and ensures everyone understands the importance of their role in the lives of our residents. Another minor shift in vocabulary, which actually makes a big difference, is the use of the word ‘colleague’ instead of member of staff or employee. To do their best work and deliver an excellent level of care, colleagues must be totally engaged and motivated and have the opportunity to continually develop their skills. They must also have clear lines of communication with other people across the business, including executives. We achieve this through forums, leadership blogs and initiatives such as ‘Listening Groups’, which encourage colleagues to discuss, and share ideas and suggestions about, their roles, the home and improvements. Although there are clearly different wage and management levels, the company does not feel hierarchical. This is by design. We want all colleagues to know how equally valued they are. This starts when they first join the company and undergo an intensive induction process over a week. Whether you are a director or a carer, you will complete the same induction process with your fellow new starters. This helps to give a full and detailed picture of the entire business and explain where individuals fit into our wider plans. As part of Our People Plan we are operating a programme called ‘Happy, Healthy, Here’ to develop colleagues as wellbeing champions. These champions support fellow colleagues
These champions support fellow colleagues in all aspects of wellbeing from mental health support to healthy living
in all aspects of wellbeing from mental health support to healthy living. This is supported by an annual wellbeing calendar with focus on specific topics to give colleagues hints and tips to stay healthy. Creating a culture based on positive values is important in both attracting and keeping hold of vital personnel. We aim to create an inspiring, vibrant place to work in what can be a challenging sector, and we want everybody we work with to be part of that. In terms of recruitment, we have had great results by working closely with job centres that are able to tap into local communities on our behalf. Recruitment open days are also a fantastic way of uncovering suitable candidates and meeting people. Our current colleagues do a fantastic job at open day events, talking about what it’s like to work at Exemplar with real passion and enthusiasm, as well as portraying
a realistic picture of life in a complex care setting. This gives people a really good preview of what the jobs entail. But also, the enthusiasm of colleagues in talking about resident environments can be infectious and encourage people to think ‘this is for me and I really want to work for this company’! We look for candidates from an array of sectors. Our Dearnevale home, for example, has a number of ex-miners who’ve forged successful care careers. Other recruits include former police officers and business people. With five new homes confirmed to open this year – in Leeds, Castleford, Liverpool, Preston and Hull – we look forward to welcoming more new faces as colleagues in the coming months. Exemplar Health Care provides specialist nurse-led care to adults with complex needs and currently has 26 homes across the UK. Areas of focus include neurodisability, brain injury, spinal injury, stroke, mental health conditions, complex dementia and learning disability.
why the postcode lottery in stroke care must end By Juliet Bouverie, chief executive of the Stroke Association.
Greg Tanner considers himself an incredibly lucky man. He was walking to his car when he had a stroke. Strangers noticing his distress called an ambulance that took him, within minutes, to Northwick Park Hospital in North London. The emergency team immediately scanned him and confirmed he’d had a stroke and received thrombolysis – but it didn’t work. Fortunately for Greg, luck was still on his side. “I don’t remember details but they decided to transfer me to Charing Cross hospital for a new treatment, thrombectomy. I didn’t understand what that meant then, but I do now and I feel so fortunate that it was an option for me.” Thrombectomy is a relatively new and exciting way of treating strokes. It involves inserting a catheter into an artery to remove a clot in the brain. It’s a highly skilled operation that happens rapidly, usually within a few hours of someone having their stroke. At Charing Cross they went in through the femoral artery in Greg’s groin running up into his brain, where the clot was captured in a fine mesh ‘bubble’ and removed completely. “I know now that it’s not a treatment that is available in many places. Thankfully, I was in the right place at the right time. Having met other stroke survivors, I now realise how different my recovery might have been. It’s quite frightening. I would not have had the same outcome if I’d been somewhere else.” Four hours after his collapse, Greg was sitting up in bed drinking tea and talking normally. He had no issues with feeling or movement in his arm or leg, no cognitive issues. He felt almost fine and is now back at work. In the UK someone has a stroke every five minutes. The majority (85%) of those strokes are ischaemic, caused by blood clots cutting off blood to part of the brain, the control centre for who we are and what we can do. Although only a relatively small number of stroke patients (around 1 in 10) are suitable patients for thrombectomy, for those that are, it can be a very powerful intervention. It removes clots too big to be broken down by clot-busting drugs, so it can significantly reduce long-term disability in people with severe strokes.
Thrombectomy is also cost-effective, which matters as stroke currently costs the UK economy £26bn. Survivors return home sooner, reducing hospital costs and they are less likely to need high levels of social care. On average, researchers estimate that thrombectomy saves the NHS £47,000 per patient over 5 years. Without it people experiencing severe strokes are more likely to be left with severe disability requiring life-time care. Despite the advantages it offers, there are significant challenges to delivering thrombectomy in many parts of the country. There are not enough trained specialists to be able to provide a 24/7 service in all areas. Specialist neuroscience centres, where thrombectomy procedures usually happen, are not evenly distributed across the UK. Worryingly, we know that in some areas even basic stroke treatments are not being given to all stroke patients, let alone cutting-edge procedures. At the Stroke Association we are working to ensure everyone is able to access all types of stroke treatment, including thrombectomy, no matter where they are based. That’s why we’re actively involved in supporting evidence-based changes to the way hospital services are designed and located, to try to abolish the current postcode lottery of stroke care in thrombectomy and right across the stroke pathway. In Wales, we are working with commissioners to develop new thrombectomy services. In Scotland, where there are currently no thrombectomy services, we are in discussions to reinstate a service as soon as possible. And in Northern Ireland, we are calling for routine funding of thrombectomy and quality services across the care pathway. In England, we co-chair the National Stroke Programme, part of the NHS Long Term Plan, which has specific milestones both to increase the number of eligible patients receiving thrombectomy, and also to equip the NHS workforce to deliver them. These are positive proposals and we look forward to working with Sustainability and Transformation Partnerships and Integrated Care Systems in making them a reality.
We’re coming back to Naidex! We’re excited to be exhibiting at this year’s Naidex show after the success we’ve had in recent years! As well as our fantastic WheelAble folding shower chair we’ll also have the full range of accessories there for you to see.
Come along to stand N1120 and take a look!
We’re also offering a 5% discount and free carriage on every chair bought at the show!
www.ospreyhealthcare.com - 01257 425 623 - firstname.lastname@example.org NRTIMES 71
DATES FOR YOUR DIARY
MAR 19/ 26-27
European Neuro Convention. Europe’s only trade event for brain and spine. Event focuses on four areas of neuro: diagnostics, surgical, rehabilitation and brain stimulation. Delegates can attend speaker sessions, interactive masterclass sessions and supplier presentations. Some 200 innovative exhibitors will be in attendance. National Exhibition Centre, Birmingham. www.neuroconvention.com
APR 19/ 3
Brain Injury Care Experts – Can I be one? What do they do? Why would I?
To list your event in NR Times contact email@example.com Please check with contacts beforehand that arrangements haven’t changed. Events organisers are also asked to notify us at the above address of any changes or cancellations.
If you are an OT, Nurse or Physiotherapist working with brain injured clients, with 6 years or more postgraduate experience and an involvement in setting up care packages, then you could be a Care Expert. This seminar will explain more about Care Expert work and how it sits alongside your current role, enhancing your clinical skills. Expert Nicola Johnson will be on hand answering your questions and sharing her experiences as an Expert. Use this opportunity to find out about this exciting work! Attend the event in Leeds at thestudio, LS1 4AW between 6.00pm and 7.30pm. To book visit www.jwebb.co.uk/ booking.
The 13th World Congress on Controversies in Neurology. Madrid is the venue for this year’s annual event, which will provide a platform for international experts to discuss and compare experiences For further details see: www.comtecmed. com/Cony/2019/
South Wales Acquired Brain Injury Forum Spring 2019 Meeting. Taking place on the afternoon of April 10 this event at Swansea University will focus on ‘Decision making about clinically assisted nutrition and hydration’. Professor Jenny Kitzinger, the Director of Research:Impact and Engagement, CoDirector of the Coma and Disorder of the Consciousness Research Centre will give the lead address.For further details see: www.ukabif.org.uk.
Neurological Rehabilitation and Disability Management Congress. This year’s event is taking place in Abu Dhabi, in the United Arab Emirates and provides an opportunity to meet and learn from key experts in the field of neurological rehabilitation and disability management. For further details see: www.inc-cnuae.com/
MAY 19/ 10-11
1st International Conference on Teleneurorehabilitation. The 1st International Conference on Teleneurorehabilitation will be held in Crotone, Italy. Organisers say studies on Teleneurorehabilitation systems and managements have grown significantly over the last decade. The World Federation for NeuroRehabilitation has organised this event to share clinical and organisational information and create a worldwide network of interested parties.For further details see: www.1ictnr.it/
Clinical negligence – Meningitis, Training Day. The Brain Injury Group will focus on Meningitis with an agenda devised to provide an in depth look at this condition. This training day in Reading will focus on breach of duty, causation and the associated complications and rehabilitation needs of those who have suffered Meningitis.For further details, see: www.braininjurygroup. co.uk/events-calendar/clinical-negligencemeningitis/
Family Matters: Understanding and addressing family needs after brain injury. This professional conference in London is aimed at rehabilitation providers, lawyers, case managers, therapists, and academics. It will explore the family experience of acquired brain injury. For further details see: www.abisolutions.org.uk
5th European Stroke Organisation Conference (ESOC). Taking place in Milan, Italy ESOC 2019 will see presentations of major clinical trials, state-of-the-art presentations by renowned clinicians and researchers, and updates on the latest guidelines. The programme has a range of different educational and scientific sessions which will address learning needs for professionals in the Stroke field. For further details see: www.eso-conference.org
3rd International Congress on Neurorehabilitation and Neural Repair. This International Congress aims to bring together scientists and clinicians with a medical or an allied health professional background to participate in connecting neurorehabilitation and neuroscience. Keynote lectures and symposia will cover basic neuroscience and emerging methods in neurorehabilitation. For further details see: www.neurorehabrepair.eu/
JUNE 19/ 9 - 13
13th International Society of Physical and Rehabilitation Medicine World Congress The theme of this year’s event, which takes place in Japan, will be ‘Rehabilitation as the Cutting Edge of Medicine’. For further information see: www.isprm2019.com
Age-proof your brain Neuroscientist Sabina Brennan, of Trinity College Dublin, recently set out five ways to stave off brain diseases in later life. Writing in the Daily Mail, her most surprising advice was to ‘get a job in a charity shop’. This, she says, allows the socialising that can actually encourage neuron growth. Other suggestions included tuning into a new radio station; novelty seemingly activates your dopamine reward system and causes your brain to release noradrenaline, which helps to form new brain connections. Smiling and shunning unsupportive friends also reportedly keeps your brain sharp.
Plastic fantastic Forward thinking toy companies are bringing empathy into children’s lives with ranges that help them understand a medical condition or injury. From June, Playmobil will start selling an accessible school featuring a lift and a disabled toilet. It already sells a child with a wheelchair and a school van that is wheelchair accessible with a foldable rear ramp. The US company ‘A Doll Like Me’, makes limb loss and limb difference dolls and was founded by a mum after her daughter wished for a doll that looked like her. Just a few weeks ago Mattel announced that from this summer it will sell Barbie with a wheelchair and a Barbie with a prosthetic leg. And it's not just Barbie who has been given a makeover; the Ken doll - Barbie's longtime boyfriend - has also been revamped with three new body types: Original, Broad and Slim.
Out on a limb A small fish from Mexico could prove key in the fight against crippling injuries by helping mankind learn how to grown new limbs. The axolotl is a type of Salamander which hails from a lake near Mexico City.
Randal Voss, a professor in the University of Kentucky Spinal Cord and Brain Injury Research Center says it's hard to find a body part they can't regenerate; limbs, the tail, half its brain, and even the spinal cord. Mr Voss and co-researcher Jeramiah Smith have been working to understand what seems like its super-healing powers and have now reached a new milestone. "So what Jeramiah and I have accomplished is really amazing, we sequenced and assembled the largest genome of any organism that has ever been assembled on planet Earth. "Clinically, down the road, we think we will be able to understand the mechanisms that salamanders use to regenerate body parts," said Voss. "If we could figure out how the axolotl uses its genome and turns its genes on at a specific time it might, be possible that we could do what an axolotl does. You just tell my arm to turn on a few extra genes after I cut it off and it comes right back," said Smith. Sounds fishy to us...
Body of evidence For many of our more active readers these two snippets from the Runners World list of the 19 Totally Weird Ways Running Affects Your Body may be of interest. Number nine; Why do I get headaches during or after a run? And number 15. Why is it so mentally tough to push myself? RW experts say: “Two of the most common reasons for headaches are ‘tight muscles and poor hydration. The trapezius attaches high on your scalp, so if you hold a lot of tension in your upper body as you run, your head could ache,” they say. For number 15; Its expert proffers that the "human brain discourages us from running to the point of disrupting the physiological homeostasis that our bodies depend on to preserve life". These both seem like sound answers but unfortunately no-one at NR HQ is able to verify them as a long-standing case of arthritis and a family man with three underfives limits exercise to walking, pram-pushing and nappy-changing. In the latter case the headaches may well have other causes?
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The Q1 2019 edition of NR Times, the magazine for all professionals working with brain and spinal injury and neurological conditions.