In part one of a two-part piece, Harvey Sihota explained how his personal journey became the driving force behind the idea for community -based rehab. In 2013, Neurokinex was born. Here, he explains more about the pioneering service
We launched our first fully-equipped, fully-staffed Neurokinex centre in Hertfordshire, delivering activity-based rehabilitation programmes to hundreds of people in the SCI community within the first couple of years.
In 2015, we launched our Step Up Scheme. These awards are made by our charity to newly injured people enabling them to participate in one of our starter activity-based programmes.
By 2016, we opened two more sites in West Sussex and Gloucestershire whilst also gaining Christopher & Dana Reeve Foundation’s NeuroRecovery® Network affiliation – the only international affiliate – to enable us to deliver their Locomotor Training (LT) and Neuromuscular Electrical Stimulation programmes.
In 2018, we launched Neurokinex Kids, a paediatric offering which delivers activity-based training programmes -designed by leading research clinicians at Frazier Rehabilitation, Louisville, Kentucky – to children with brain and spinal cord injuries.
Today, our three centres serve 100s of spinal cord injured individuals every month across Hertfordshire, Sussex and Gloucestershire, helping them with their recovery and wellness goals. Participants in our programmes range from high-level ventilated tetraplegics to ambulatory paraplegics, aged from 12 months to 90 years. They include those wanting to improve their abilities to those who want to stay on top of their health and wellbeing.
We knew from the first day we opened the doors at our Hertfordshire centre in 2013 that we would be offering something special: a lifeline and an opportunity for people to redefine their own possibilities post-injury. In fact, ‘Redefining Possibilities’ is our strapline. Crucially, we bring them hope for a better, more independent future.
Staving off secondary complications / saving costs
Access to specialist rehabilitation services within the community is not only about maximizing recovery in the early stages of injury. Yes, improving function and performance help improve independence and quality of life. But access to such services can also play a big role in reducing the healthcare costs associated with secondary complications that plague the SCI community.
Complications such as pressure sores, bone fractures, muscle contractures, weight issues and depression are prevalent with physical inactivity leading to a greater risk of cardiovascular disease, stroke and diabetes. Our bodies are designed to move and weight bear. It is, therefore, vital that people with SCI have access to affordable, community-based rehabilitation. I’d go as far as to say they have a right to this rehab.
Giving access to all
While I’m proud that we can bring our activity-based rehab programmes to people at Neurokinex, I’m equally frustrated that we can’t yet bring these types of services to all. Being denied access to appropriate community rehab due to where you live or how much disposable income you have is wrong.
Everyone with a SCI has a right to the best possible rehabilitation and we must make accessible, inclusive rehab a reality. Not only that: we must ensure that we are building the community infrastructure and networks to adopt the next generation of innovations in the pipeline.
While we are making progress in terms of growth and accessibility, as of today, services like ours are still very much out of reach for too many people. We need to bring attention to the need for community rehabilitation across the UK and sufficient funding to support continued access to it for life.
Importantly, there should be no ‘end date’ for rehabilitation: the central nervous system is always ready for input and gains can continue to be made, even many years after injury.
Our #Right2Rehab campaign sets out these aims:
- Raise awareness of the unmet need of community-based spinal cord injury rehab
- Raise awareness of the financial barriers faced by those living with a SCI
- Raise awareness of geographical barriers faced by some people
- Raise awareness of the benefits of activity-based rehab
- Make a case for a network of community-based rehab hubs to deliver specialist programmes
- Show how the right rehab will enable people to return to work, resume activities in their communities and lead a fulfilling life
- Make a case for the right rehab delivering a net gain for UK plc as people return to work
Enabling people to exercise their right to rehab will enable them to return to work, resume activities in their communities and lead a fulfilling life.
Our vision is a world where people can access activity-based rehabilitation wherever they live. To help us get there, we plan to pilot, prove and scale innovative community rehab models for the benefit of all.
Only then can everyone living with a spinal cord injury access their right to rehab.
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