We all have a right to rehab

In the first of a two-part piece, Harvey Sihota discusses the background to him founding Neurokinex and its life-changing, innovation-led approach to neuro-rehab after spinal cord injury

After a catastrophic life-altering event like a spinal cord injury (SCI), the National Health Service (NHS) does an impeccable job of providing acute intervention through the trauma networks and inpatient rehabilitation through the network of regional spinal injuries centres. It is here where the recovery process truly begins, with the incredible support of skilled and dedicated therapists, nurses and doctors.

My own journey in 2009 started with being admitted into the Royal London Major Trauma Centre immediately after my accident. There I underwent decompression and fixation surgeries before being moved to the National Spinal Injuries Centre at Stoke Mandeville Hospital for my inpatient rehabilitation.

At Stoke Mandeville, I learned to sit and balance, to transfer in and out of my wheelchair, to self-care and use my wheelchair for everyday life. I even managed to do a bit of physical rehabilitation with prosthetics called “calipers” that lock your lower limbs straight so you can weight bear and shuffle about on your feet.

You have a lot of time on your hands as an inpatient. My curiosity meant that I spent much of that spare time researching the latest rehabilitation innovations, best international facilities and neuroscience developments that could influence my future outcomes. It quickly became apparent to me that I would require ongoing rehabilitation input, long after being discharged from Stoke Mandeville.

While some of my ward fellows with more complicated or severe injuries would stay on for many more weeks, my low level of injury (T12) meant that I breezed through the NHS rehabilitation programme and was ready to go home and focus on the next stage of my recovery journey. 

Seeking expert support

Not long after arriving home, I was “lucky” enough to be referred to the local NHS community physiotherapy department for some outpatient sessions. Frustratingly, after the first two sessions, it was clear that this was not the setting for me to maximise my potential as they didn’t have the experience or equipment to help me.

It was during this time I would often toy with the thought that had I been an elite athlete, I would have had access to world-class doctors, sports scientists and strength and conditioning coaches to support my recovery or, if you will, my pursuit of personal bests. Alternatively, had I been a Hollywood actor getting ready for a physically demanding role, I would have had a skilled personal trainer putting me through my paces for several hours a day to prepare for it. That may sound entitled, but that was the type of environment I was searching for.

This in mind, I started to scour the internet for private rehab providers at home and abroad. While I tried a few private providers in the UK, very few matched the innovation and intensity of some of the leading facilities abroad. At the time, much of the innovation in spinal cord rehabilitation was happening in the US with some of the best facilities either members of the Christopher & Dana Reeve Foundation’s NeuroRecovery® Network (NRN) or part of the Project Walk franchise.

Knowing that such possibilities were out there but beyond the reach of our SCI community in the UK felt deeply unfair. 

The Big Idea

In 2011, with the help of a former colleague and building on the legacy of Peter Carr’s Standing Start – the first charity in the UK to deliver activity-based rehab programmes – I set about developing an idea of a scalable network of neuro gyms that would serve as a platform for people to maximise their recovery in a community setting on their terms, as well as providing access to innovation.

We sought to staff these gyms with the type of team you would want to surround an elite athlete. Teams that are multi-disciplined, creative and bring the right mix of tough and fun. Teams that enable the individual to set their short, medium and long-term goals on their terms. Teams tuned into those marginal gains and incremental wins. Teams built for performance.

Onwards and upwards

As a self-confessed futurist, innovation would always be a key driver for the idea. I felt it would be inevitable that the possibilities for recovery would only be enhanced by the gathering pace of science and technology. And, therefore, we would see an increasing demand for rehab infrastructure over time. And what better place to do that than in a welcoming community setting surrounded by an enthusiastic, positive and skilled team?  

In 2013, Neurokinex was born. In Part Two of this blog, I will tell you more about how the concept for community-based rehab took shape and developed with the help, co-operation and determination of many highly talented individuals whose vision and skills have no limits. And how, having proved this model works, it’s vital we keep driving forwards to ensure everyone has a right to rehab.