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
