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The Continuum of Rehabilitation for Children with SCI

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With new advances in neurorestorative therapies becoming available in the UK, community-based rehabilitation for children living with spinal injuries has a bright future ahead.  

Though they are only a small percentage of the overall number of people living with spinal cord injuries, children most urgently need access to ongoing specialist rehabilitation programmes within their communities. This is because, in addition to the secondary complications suffered by people of any age with SCI, children’s bodies are still growing and are therefore susceptible to a myriad additional health and growth problems when paralysed at a young age.  On the bright side, children’s brains and neuromusculoskeletal systems are actively developing, and thus hold great potential for improvement through regular access to specialised rehabilitation programmes.

The further good news is that if we can improve care pathways for children living with SCI beyond the national spinal units, we can avoid health and growth issues which, in turn, can lead to fewer secondary complications and greater independence. Significant improvements in overall mental wellbeing and quality of life can also be expected, not to mention reduced pressure on the overburdened NHS.  

New care pathway

The spinal injury charity Back Up alongside Dr Fiona Barr, Consultant in Health Care, and the Specialist Spinal Cord Injury Services are piloting a new care pathway, which aims to, ‘refine a care journey which will focus on meeting the needs of newly injured young people and their families – from the point of injury to settling back into home, school and social life.’  This is also to include a closer look at community rehabilitation for children with SCI.  

The new care pathway should improve procedures in order to ensure that children with new or newly diagnosed spinal injuries are admitted to one of the 11 national Spinal Units as soon as they are in a stable condition. Ideally, they will be accepted into one of the two centres that have dedicated paediatric spinal injury wards – the National Spinal Injuries Centre (Stoke Mandeville Hospital, Bucks) and The London Spinal Injury Centre (Royal National Orthopaedic Hospital, Stanmore, North London).  Services there include management of the acute phase of injury, rehabilitation of new spinal injuries, outpatient assessment and management, and long-term management of the health of children with spinal injuries, usually on an annual or bi-annual basis.  

Lacking expertise and resources

Once the initial admission period has concluded, the spinal units liaise with local services to aid transition of the child back to their local community, which includes referrals to their local NHS PT and OT services.  Unfortunately, these local services are often hugely oversubscribed, and rarely have specific expertise in the extremely complex condition of paediatric spinal injury. Coupled with limited resources, they are usually unable to offer no more than recommendations on stretching and bracing regimes.  Access to the latest neurorestorative technologies and the regular 1:1 activity-based physiotherapy programmes necessary for recovery and improved general health are currently beyond the remit of these services.  Thus the potential of the latest neurorestorative therapies to make an impact on children is simply untapped within community rehabilitation.  

To address this deficit specialist SCI rehabilitation centres have emerged, including Neurokinex. Our non-profit organisation has three centres serving the south of England, including our Gatwick centre which has a dedicated paediatric space called Neurokinex Kids.  Here we are able to offer children the latest in neurorestorative therapies for spinal injury, such as Locomotor Training and Wide-Pulse Electrical Stimulation.   In one recent study Locomotor Training demonstrated improved trunk control in all participants regardless of chronicity, initial impairment, or prior experience (Argetsinger LC et al, 2018). 

Breaking down any financial barriers to these programmes, NHS Continuing Healthcare, set out in 2016, can access the needs of children with complex, ongoing healthcare needs as a result of accident, illness or disability and provide customised care packages for individual children. The local Clinical Commissioning Group is responsible for leading the process and determining eligibility. Children and young people can be referred to the CCG for assessment by any health or social care professional involved in the child’s care or by the family directly.  Increasing numbers of children are accessing the specialised care they need in their communities via this route, including physiotherapy.

Specialist services

At Neurokinex Kids we are seeing a growing number of referrals for children as young as 18 months.  My son was one of the first children to come to Neurokinex aged just three.  Now seven, he has made remarkable progress and continues to benefit from the ground-breaking therapies here.  Neurokinex has treated upwards of fifty children in the last four years and demand for our paediatric services is very high.

All children living with the challenging and complex prognosis of paralysis deserve access to the best specialised community rehabilitation, not just for their growth and development now, but to make them healthier, more independent, happier adults.  

We have a long way to go before this is realistic but where such programmes and therapies are in place, the value of these is undeniable. We must continue to strive to create many more community rehab spaces as the impact on children is nothing less than lifechanging.

Kate Thornton-Jones, Fundraising Director, Neurokinex

www.neurokinex.org

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Spinal cord patients see improvement in motor functions in new trial

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After being injected with stem cells, patients reported an improvement with their motor skills

Intravenous injection of bone marrow derived stem cells (MSCs) in patients with spinal cord injuries led to significant improvement in motor functions, new research has found.

For more than half of the patients, substantial improvements in key functions — such as ability to walk, or to use their hands — were observed within weeks of stem cell injection, the study from Yale University reports.

No substantial side effects were observed, they added.

The patients had sustained non-penetrating spinal cord injuries, in many cases from falls or minor trauma, several weeks prior to implantation of the stem cells.

Their symptoms involved loss of motor function and co-ordination, sensory loss, as well as bowel and bladder dysfunction.

The stem cells were prepared from the patients’ own bone marrow, via a culture protocol that took several weeks in a specialised cell processing centre.

The cells were injected intravenously in this series, with each patient serving as their own control. Results were not blinded and there were no placebo controls.

Yale scientists Jeffery D. Kocsis, professor of neurology and neuroscience, and Stephen G. Waxman, professor of neurology, neuroscience and pharmacology, were senior authors of the study, which was carried out with investigators at Sapporo Medical University in Japan.

Key investigators of the Sapporo team, Osamu Honmou and Masanori Sasaki, both hold adjunct professor positions in neurology at Yale.

Professor Kocsis and Professor Waxman stress that additional studies will be needed to confirm the results of this preliminary, unblinded trial.

They also stress that this could take years, but despite the challenges, remain optimistic.

“Similar results with stem cells in patients with stroke increases our confidence that this approach may be clinically useful,” notes Professor Kocsis.

“This clinical study is the culmination of extensive preclinical laboratory work using MSCs between Yale and Sapporo colleagues over many years.”

“The idea that we may be able to restore function after injury to the brain and spinal cord using the patient’s own stem cells has intrigued us for years,” adds Professor Waxman.

“Now we have a hint, in humans, that it may be possible.”

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Inpatient rehab

Family hail ‘amazing’ care at neurorehab centre

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Fraser Millar and his family

A family whose beloved husband and father had a stroke are fundraising for the neurological centre where he currently resident, after being impressed by the “amazing” standards of care.

Fraser Millar needed life-saving brain surgery in November last year and is now in Woodlands Neurological Care Centre in York, receiving intensive rehabilitation to aid his recovery.

Woodlands, a level two neurorehabilitation centre which is part of Active Care Group, specialises in maximising recovery and independence and sets patients rehabilitation goals that promote re-enablement and enhance quality of life.

Now, Fraser’s family – wife Debs and children Alex and Ryan – are fundraising on behalf of Woodlands, to purchase therapy equipment which will benefit people who are undergoing rehabilitation at the centre.

To remember the long walks Fraser and Debs used to enjoy so much, Debs and daughter Alex are walking the equivalent 230 mile distance from York to Perth in Scotland, where Fraser is from.

Having set a target of £500, the total now stands at over ten times that amount, with over £5,680 being raised at the time of writing.

Family, friends and work colleague donations have come from as far afield as Canada and Australia, from people inspired by the Millar family’s story, which has been widely shared on social media and is touchingly accompanied by the hashtag #comeondad.

“We feel the team at Woodlands have become extended members of our family, they’ve been amazing,” says Alex.

“One of dad’s hobbies is cooking, he’s an amazing chef and loves to watch cookery programmes on TV in the kitchen at home. Woodlands staff noted this on his arrival day and within 20 minutes dad was watching The Hairy Bikers in his room and he continues to watch various culinary programmes!

“Staff there make a huge effort to make dad comfortable, take great care of his needs and interact with us brilliantly, we’re so thankful and extremely happy he’s having the best care.

“We’re raising money to say a huge thank you and while we’re doing it for dad, it’s great that it will benefit other patients too.”

Debs and Alex initially set a target of completing their walk by March 7, which is Debs’ birthday, but typical of their determination, they had already finished by February 24. Their fundraising target has also been vastly exceeded, with donations continuing to come in by the day.

“We initially thought our family and close friends would help with our fundraising cause, but the charity page was quickly circulated and within hours are target was met and the figure kept rising, we couldn’t believe it! We are incredibly thankful for every donation,” says Alex.

“We feel so touched and overwhelmed to have had such amazing support for dad. We walked the long miles but the generous donations kept us going and without them we wouldn’t be in the position to present Woodlands with the equipment they deserve.”

To add support to the Millar family’s fundraising on behalf of Woodlands Neurological Care Centre, visit https://www.gofundme.com/f/woodlands-neurological-rehabilitation-centre

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Could sesame seeds help protect against Parkinson’s?

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There is currently no cure of Parkinson's, but research like this could help change that

A chemical commonly found in discarded waste from the sesame seed oil manufacturing process could have protective effects against Parkinson’s disease, new groundbreaking research has found.

Sesaminol, abundant in the empty shells of sesame seeds which are discarded after the fatty oils are extracted, could have a role to play in protecting against neuron damage in the brain, researchers from Osaka City University have revealed.

“Currently there is no preventive medicine for Parkinson’s disease, we only have coping treatments,” says OCU Associate Professor Akiko Kojima-Yuasa.

Professor Kojima-Yuasa led her research group through a series of experiments to understand the effects of sesaminol on in vitro and in vivo Parkinson’s disease models.

Parkinson’s disease is caused when certain neurons in the brain involved with movement break down or die due in part to a situation called oxidative stress – neurons in the brain come under extreme pressure from an imbalance between antioxidants and reactive oxygen species (ROS).

The team found in cell-based in vitro experiments that sesaminol protected against neuronal damage by promoting the translocation of Nrf2, a protein involved in the response to oxidative stress, and by reducing the production of intracellular ROS.

In vivo experiments brought Professor Kojima-Yuasa’s team what the University have hailed as equally promising results.

The impairment of movement due to Parkinson’s disease is the result of damaged neurons producing less dopamine than is naturally needed.

The team showed that mice with Parkinson’s disease models show this lack of dopamine production. However, after feeding the mice a diet containing sesaminol for 36 days, the research team saw an increase in dopamine levels.

Alongside this, a rotarod performance test revealed a significant increase in motor performance and intestinal motor function.

With the first-ever medicine for Parkinson’s disease potentially being the naturally occurring food ingredient sesaminol, and this ingredient being found in the naturally occurring waste of the sesame seed industry, Professor Kojima-Yuasa and her team are ready to take their work to the clinical trial phase and connect the consumption/production chain in a way that, as she puts it, “prevents diseases with natural foods to greatly promote societal health.”

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