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ConnectAbility projects uses smart devices to help brain injury patients

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A project has been launched to introduce smart assistant devices into residential facilities for brain injury patients to enhance their wellbeing and increase their communication with the outside world both during the COVID-19 pandemic and beyond.

The Disabilities Trust is pioneering the ConnectAbility project, which makes use of technologies and digital means to help increase independence and widen opportunities for social interaction among patients.

Through raising money to buy smart assistant devices, such as the Amazon Alexa, the Trust believes this could help people to live independently and bridge the ‘digital literacy’ gap which have previously prevented many people, particularly those with cognitive impairments, from benefitting from technology.

The ConnectAbility project will be introduced to six residential facilities operated by The Disabilities Trust nationally, and is already delivering significant benefits to residents in its Thomas Edward Mitton House (TEM House) facility in Milton Keynes, where technology has played a key role during the pandemic and its ongoing restrictions.Residents at the 16-bed neurorehabilitation unit, which supports people who are recovering from a traumatic brain injury or stroke, has been enabled to be more connected to loved ones and support circles remotely during the past few months, as well as benefiting from symptom management and use of compensatory strategies to enable people following their discharge from the unit.

Throughout the pandemic we’ve been busy introducing new devices and activities to keep our residents connected and offer access to brand new experiences, all within the four walls of TEM House,” explains Narinder Kapur, Consultant Clinical Neuropsychologist at TEM House.

“We have seen enhanced psychological wellbeing in residents, and we were able to provide a greater social connectivity.

“We aim to continue to use assistive technology moving forward to life after the pandemic, and we anticipate that it will have an increasing role in residential brain injury rehab.”

Research from the World Health Organisation has predicted that more than two billion people will need assistive technologies by 2030, although still technology designed for the elderly and/or those with disabilities was costly and designed for a single purpose.

Through the adoption of more mainstream assistive technology, new possibilities are being opened up for patients with complex needs, which, says The Disabilities Trust, is delivering tangible benefits in terms of confidence, independence and reduced isolation within its centres.

The Trust adds that there are challenges to overcome in terms of the need for training for users, staff, family and friends to ensure devices are functioning correctly, and that studies have also shown staff are needed to support, show and encourage individuals to use the devices to ensure they are used effectively.

It is not enough to simply provide the devices to service users, it says; appropriate training and support is critical to minimise the risk of abandonment.

“We are really excited by the opportunity to work with the people living in our services and our colleagues to understand the benefits of mainstream devices on an individual’s wellbeing,” says Jocelyn Gaynor, Head of Foundation for The Disabilities Trust.

“Coronavirus has made us all acutely aware of the importance of connection and interaction with the world outside our windows. We hope that by piloting these devices we are able to further the understanding of whether access to the digital world through an Alexa can improve wellbeing and reduce isolation. This is increasingly relevant for those living in care homes right now.”

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‘My baby was brain damaged by jaundice – help us to stop this happening again’

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Elena Kalisperas and her son Vasili

While Vasili Kalisperas was born a healthy baby, his undetected jaundice has left him with cerebral palsy and needing round-the-clock care. Here, his mother Elena shares her story and calls for action on kernicterus to ensure such heartbreak does not happen to more families

“When Vasili was born, he was a perfect, healthy baby. I didn’t know I was expecting a boy and we were absolutely thrilled to know have a son as well as our older daughter.

I remember gazing at him in my arms, completely on cloud nine, thinking how absolutely perfect he was, looking forward to a making a lifetime of happy memories together.

He was so strong and determined even in the hours after he was born, lifting his head up and showing such determination. I called him my ‘Little Spartan’ as he clearly had such strength inside him.

Little did I know how much that strength would be needed, as almost overnight our perfect situation became every parent’s worst nightmare.

I went home the same day as having Vasili, because I had already had a child – although that was five years previously – and I’d had a healthy pregnancy, so was deemed at low risk of anything going wrong. Vasili was checked by a paediatrician in hospital, who found nothing of concern, so we went home. A midwife then came to visit me at home, and again, nothing seemed wrong.

Little did we know that Vasili had jaundice – a condition which affects so many newborn babies and is easily treatable, but when left untreated, can have the most terrible of consequences. We first realised something was wrong with our son.

Early signs in hindsight were high pitch cry, not feeding well, lethargic, jaundice but alarm bells didn’t ring until his urine came out orange but that’s when it was too late.

In hindsight, he had a high pitched cry, wasn’t feeding well and was quite lethargic, which raised concerns – but when his urine was orange, that’s when we realised something was wrong. As a parent, you know when something isn’t right.

We went back to hospital and it became panic stations. It was a mad rush to save his life. We waited five long hours for bloods to come from Birmingham Children’s Hospital for his double exchange transfusion and didn’t know at that point if he was going to survive.

From being my perfect, happy, healthy baby, Vasili was now fighting for his life. He spent three weeks in intensive care, and thankfully won his battle for survival. But it soon became apparent he would be battling every day for the rest of his life.

We found out Vasili had kernicterus, a result of untreated jaundice caused by excess bilirubin, which can damage the brain or central nervous system.

It’s a little known condition, I had never heard of it, so I didn’t appreciate how serious it was until I saw my son connected to all those machines. I had never seen so many wires coming out of a baby.

Only days after being born a healthy baby, my son, my Little Spartan, was left with brain damage. He is profoundly deaf with little eyesight, and has Cerebral Palsy which means he cannot walk or sit unaided. He needs 24 hour care, and probably will do for the rest of his life.

The devastation this has had on our family is something I can’t really put into words. Vasili has lost any independent future he could have hoped for, and our lives as his family have all completely changed. We share our home with a team of carers and our days are a sea of medical appointments.

My relationship with my husband has come under huge strain, and we have both suffered from PTSD as a result of what we’ve been through. We see Vasili in so much pain, communicating with us only by crying when something is wrong, and it’s so very hard to cope with.

This is not how we imagined our life would be, and I have grieved for the fact that our son was such a healthy baby, but through the lack of diagnosis of what could have been a minor ailment, he is now left completely dependent.

Kernicterus is something which should not have happened to Vasili, and we want to do all we can to ensure it does not happen to any other baby and any other family. It is completely preventable and we must take the steps in our NHS to make sure it is just that.

In the US, it is treated as a ‘never event’ due to the fact it is something that simply should not happen. Screening in newborns there is routine, at which point jaundice can be picked up and a simple round of phototherapy can resolve the situation.

But by contrast, here, we have nowhere near the standard of awareness or education around jaundice. Amidst the masses of information you receive as an expectant mum, jaundice is perhaps one line in there, it’s not something you know much about or treat as serious in any way.

Through our experiences, we’ve found that even many midwives don’t know about kernicterus. This must change, or else the mistakes that were made in our case will happen again and continue to do so. Worcestershire Acute NHS Trust admitted negligence in our case, but we need change to happen on a national basis.

We know of similar situations which have happened since Vasili was born, and that is the heartbreaking thing. This is so avoidable.

We are calling for routine screening of babies to be introduced into the UK, and have started a petition to make this happen. It is so important to the health of all babies that we understand their levels of bilirubin at the earliest time, and particularly before they are discharged from hospital.

Greater education and awareness is also needed of jaundice. New mothers have little idea what they are looking for and need to be made more aware. We have heard from several mums who were so grateful for us being so vocal, or else they wouldn’t have asked the questions they did.

People don’t realise the risks around jaundice not being diagnosed and that’s at the root of the problem. Greater awareness and screening can save babies from a life of pain and trauma like my son goes through every day.

We need change to happen. This cannot wait. What happened to Vasili was preventable and we must do all we can to try and prevent it from happening again.

Visit the family’s website www.mylittlespartan.co.uk for a link to their petition

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Meet the UK’s Catastrophic Injury Team of the Year

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Chris Stewart - head of the serious injury department at Digby Brown

As winner of the Catastrophic Injury Team of the Year at the most recent Personal Injury Awards, law firm Digby Brown writes for NR Times to highlight its track record in serious injury work and commitment to supporting brain and spinal cord injury survivors

To many the name may not be familiar.

The firm, after all, operates exclusively in Scotland. But their serious injury department, which specialises in helping brain and spinal cord injury, defeated competition from all over the UK to earn the top accolade in the Personal Injury Awards 2020.

It therefore merits that NR Times asks the question ‘Who is Digby Brown?’ so accident survivors and healthcare professionals can learn more about the firm which finds itself under the spotlight.

As a firm, Digby Brown has supported those affected by the most high profile cases in Scotland.

The Clutha helicopter tragedy. The Glasgow bin lorry disaster. The M9 police call handling scandal. The Stonehaven rail disaster. Abuse cases against religious groups and football clubs like Celtic. Even landmark settlements for asbestos disease claims.

And as a team, the firm’s serious injury department shares the firm’s reputation for being an expert advisor to survivors of ABI or spinal cord accidents.

Among the cases of note is the settlement of a claim for a man who suffered a serious head injury after being run over by the son of ex-Rangers footballer Ally McCoist.

They also act for the victims of a fatal road crash that claimed the life of one teenager and left two others with serious injuries.  This case was prolific in legal sector as it sparked a Scottish debate on the sentencing of drivers convicted of death by dangerous driving.

The firm, and indeed the serious injury department’s, reputation that has been hard-earned and forged with tenacity, compassion, consistent results and integrity which is why Digby Brown has strong ties among charities, support groups and health sectors.

Digby Brown is committed to not just recovering compensation – it has a compassionate hands-on approach to ensuring each survivor has a tailored all-round support package to meet their unique and individual needs.

Spinal Injuries Scotland and Back Up often refer spinal cord injury survivors to Digby Brown for legal support with spinal cord injuries while brain injury survivor network Headway highlights Digby Brown as a go-to firm for legal help after a traumatic brain injury.

Having close bonds with SIS and Back Up means Digby Brown also a great reputation among NHS staff at the Queen Elizabeth National Spinal Unit in Glasgow – a state-of-the-art facility dedicated to treating and rehabilitating survivors of spinal cord injury.

The firms also repeatedly tops legal rankings year on year for personal injury work. In Chambers & Partners the firm has been ranked Band 1 for the last 15 years. The head of the serious injury department Chris Stewart is also ranked as a leading individual. While in The Legal 500 the firm has been ranked Tier 1 for the last 14 years.

The Association of Personal Injury Lawyers (APIL) has around 50 accredited specialists in the Scotland for personal injury work – and around half of these work at Digby Brown. Then there’s Moira Kay, a Partner in the Serious Injury department, who is the only APIL-accredited specialist for both brain injury and spinal cord injury in the whole of Scotland.

Then there’s the settlements themselves – £223million in the last 10 years.

“So they have the reputation, results and talent – but what does Digby Brown do differently?”

Under the leadership of Partner Chris Stewart, the Serious Injury team makes sure each new client has access to:

Immediate medical care (even if it needs to be obtained privately)

Counselling or CBT (cognitive behaviour therapy) – the firm does everything it can to help a new client tap into a positive mindset to enhance the effectiveness and speed of their recovery.

Interim payments – if a brain or serious injury survivor can no longer work then Chris and his team will seek an immediate lump sum to help with urgent issues like mortgage payments

A case management worker – to take a hands-on approach to helping assess and solve your immediate, short term and long term care needs while also putting things in motion to help you create a home, personal and (if possible) work life for the future.

Welfare rights – Digby Brown has in-house staff who help accident survivors navigate the benefits process pro bono (completely free) simply as part of their service.

Charity support – the firm’s recognition from charities means they can help survivors access peer support groups for guidance and hands-on help.

And when all this is happening, the team is not merely a voice on the other end of the phone.

Chris’ team will welcome you to one of their seven offices across Scotland (whichever is nearest to you) or they are just as happy to visit you at home or even your hospital if you’re still engaged with rehab work.

Outside of the legal support the serious injury team at Digby Brown has a proven track record in educating and enhancing the support available to ABI and spinal cord survivors.

Each year is hosts the Head Injury Information Day (HiiD) in Glasgow and Edinburgh where brain injury survivors or healthcare professionals come together to share knowledge and access support. The last event saw 30 exhibitors and 300 people attend – a popularity that will now see similar events planned for Inverness, Dumfries and Aberdeen.

They also host an annual summer barbecue at Castle Semple near Glasgow where wheelchair users can experience hand cycling, sailing or kayaking.

Or the famous Winter Dinner Dance – an annual black tie gala that is the highlight of the year on the Scottish legal social calendar to raise money for wheelchair users and the charities that support them.

Then there’s the road awareness events it hosts alongside road safety stakeholders for 16-year-old school pupils before they don their L plates as well as numerous sponsorship programmes it offers for wheelchair sports like the Caledonian Crushers or Dundee Dragons.

All these things is why Digby Brown won the Catastrophic Injury Team of the Year award last year.

As the Personal Injury Award 2020 judges noted: “Catastrophic injury cases can be incredibly complex and demand a high level of collaboration and team work in order to see them to a successful outcome.

“This dedication is also reflected in [Digby Brown’s] impressive community work where again it goes the extra mile.”

Chris Stewart, head of the serious injury department, explained what he thinks is the secret to the department’s success in Scotland.

“I am in the fortunate position of leading a team of high skilled and experienced solicitors who are unwavering in their focus of achieving the best possible results for clients,” he says.

“As a specialist team we can concentrate all of our energy and knowledge on the most seriously injured and guide them through what is a complex legal process.”

He also outlined a few key differences between the legal systems in Scotland and England and what this means for accident survivors – but also what he hopes will improve or be achieved in the future.

Chris adds: “The long awaited introduction of Periodical Payments in Scotland will mean, for the first time, the most seriously injured will have a legal right to have their damages paid annually for the remainder of their life, rather than being forced to accept a discounted, one-off, lump sum which they are expected to invest in volatile markets.”

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Immune cells key in Parkinson’s disease – study

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The research could help develop new understandings to how the disease progresses

Immune cells in the blood influence the brain during early development of Parkinson’s disease, new research has found.

Until now, Parkinson’s disease has always been considered a brain disorder, but through new research into a sleep disorder, a close link has been established between the disease and certain immune cells in the blood.

Researchers from Aarhus University have taken the first step on a path which could lead to new ways of understanding and, in the long term, possibly treating this widespread disease that affects not only motor functions but also cognition and emotions.

“We know that Parkinson’s disease is characterised by an inflammation in the brain, and that this is crucial for the progression of the disease. But in the study, our interest has been focused on the immune cells found outside the brain,” explains Marina Romero-Ramos, associate professor at the department of biomedicine at Aarhus University.

The researchers have studied a group of patients suffering from REM Sleep Behaviour Disorder (RBD), a condition where the patients physically act vivid dreams with vocalisations and movements.

If, for example, a patient dreams that they are running, their legs will move as if they were actually running. The sleep disorder is often discovered by a spouse as it results in violent movements at night, and the diagnosis is often indicative of something more.

Patients with RBD have a high risk of developing Parkinson’s – statistically approximately ninety per cent of them will be diagnosed with a Parkinsonism related disorder over the course of five to ten years.

In Parkinson’s disease, a protein called alpha-synuclein aggregates in the neurons in the brain, and this kills the cells. The same protein also aggregates in the brain of people with the RBD, and it is therefore regarded as an early form of Parkinson’s disease.

This led the researchers from the Department of Biomedicine at Aarhus University – in collaboration with a group of neurologists and experts in nuclear medicine at Aarhus University Hospital, led by Dr. Nicola Pavese – to carry out scans of the brains of 15 patients with RBD and ten healthy people.

The scan revealed that the patients with the sleep disorder had inflammation and a loss of neuronal activity in the brain. Although they did not present symptoms of Parkinson’s, their neurons were already ill and the brain’s immune cells were activated.

The groundbreaking discovery happened when Dr. Marina Romero-Ramos and her colleagues from Aarhus University analysed blood samples from these patients.

It turned out that the inflammation in the brain, and the associated loss of brain cells, directly related to changes in some immune cells in the blood, the monocytes.

When certain proteins increased on these immune cells, there was in parallel increased inflammation in the brain and a decrease on the neuronal activity.

This is a key finding when it comes to understanding Parkinson’s disease, say the researchers.

“We could see that the blood’s immune system changes very early on – even before Parkinson’s is diagnosed,” says Marina Romero-Ramos.

“This is the first study to show that the body’s immune system continuously communicates with the brain during the development of Parkinson’s disease, and that changes in the body’s immune system influence the condition of the neurons in the brain.

“In connection with Parkinson’s, this presents us with new opportunities for studying the immune cells in the blood and finding new forms of treatment.”

This means that the researchers now hope to find and investigate ways to influence Parkinson’s disease by treating the blood and not the brain.

Previous experiments on mice and rats suggest that this is possible, even though there is still much research to be done, as Dr. Romero-Ramos explains.

“This opens up the possibility of being able to design immunotherapy that modulates cells in the blood, which subsequently would stop or delay the changes in the brain. For the patients, being able to enjoy more years with good quality of life will be very significant,” she says.

“It also opens up opportunities for us to be able to find biomarkers in the blood that can tell us how someone’s brain is doing. Blood tests can be done more often and cheaper than a brain scan.”

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