NRN Community Center Expands to UK - Blog - Reeve Foundation

Harvey Sihota, from London, injured in 2009, now runs a network of community fitness/wellness gyms, Neurokinex, in the U.K. One location, in Gatwick, 30 miles south of London, was just named as the first Christopher & Dana Reeve International NeuroRecovery Community Fitness and Wellness Affiliate. The NRN is a group of 12 rehabilitation centers and community fitness facilities that work to move science into treatments for spinal cord injury. Very cool for Harvey. Here’s how it all came about:

After discharge from the spinal injuries hospital I felt that I had not had nearly enough nor the quality of rehabilitation my recovery deserved – a common theme with anyone who is spinally injured in the UK.

After only a couple of weeks into my injury it became very apparent that there was a misalignment between what science said and what was being delivered by our National Health Service as a standard of care. On one hand. I was reading about plasticity, activity-based rehabilitation, task-specific movement, electrical stimulation, intensive training and a use-it-or-lose-it style message. On the other hand, I was seeing and experiencing a narrative that the early presentations (first two months) of your injury were indicative of 95 percent of your recovery and that learning (albeit valuable) life skills with your impairment took priority above all else.

It was as early as this I had the seed of a plan for myself – to find a rehabilitation facility that would give me a platform to thrive rather than survive with my injury. My standards were high. I wanted the best-of-breed rehabilitation techniques/equipment/approaches. I wanted a commitment to evolution through R&D. I wanted it to be affordable. I wanted to train in an environment that made me feel like an athlete. I wanted it to be geographically accessible so that it could be integrated into my lifestyle in London.

I was disappointed. I couldn’t find anything that satisfied my requirements in the UK. I realized that what I wanted was only available in the US, and that I would have to either compromise on my demands or move! However, there was a third option. There must be a need for this in the UK! Could I set something up?

Well, yes, that was the answer. Harvey, with help from a former banking colleague, launched Neurokinex in 2013, in Watford, on the north side of London. The Bristol shop opened in 2015 and the one in Gatwick joined this year.

I was convinced the UK needed not only one facility but a network of community-based facilities that could supplement the acute/sub-acute work that the NHS hospitals do to help individuals recover more/optimize function, learn more about their bodies and really push the barriers of their spinal cords – all within a friendly, motivating and dynamic Community setting.

Neurokinex sites are staffed by PTs, OTs and exercise physiologists, with equipment to work with any type of spinal cord injury. “This was very important to the vision,” says Harvey. “We wanted to make our programs accessible and inclusive. We wanted high-level tetraplegics to have the same opportunity to stimulate and load the nervous system as low-level paraplegics in order to promote recovery and performance.”

How did it work out for the founder?

Personally I experienced a number of changes. I had return in both stronger adductors, hip flexors, some flickers in hip and knee extension, more muscle bulk, stronger trunk, better balance and far more confidence in performing activities out of my wheelchair. On top of this, the intensity of the activities has allowed to maintain my fitness levels and body integrity whilst not having to compromise on diet or drink.

So now comes the Reeve designation. A pretty cool endorsement, being that the NRN is research and evidence- based. It means that Neurokinex will offer Locomotor Training per the NRN protocols.

The affiliation was an easy decision from our perspective. The additional protocols are a natural fit with what we already had in our armory and not to mention our vision had always been to stay on the cusp of technology and science. Joining the Reeve family has helped us keep that vision alive by giving us access to some wonderful expertise and leadership in rehabilitation & wellness.

There are so many health benefits that are available through participation in an activity-based rehab/wellness program. Whether it's optimizing muscle function, being generally healthier/stronger/fitter or even minimizing the dreaded (and sometimes fatal) secondary complications (osteoporosis, muscle contractures, muscle atrophy, pressure ulcers) - there's huge benefit through participation and a perfect baseline for clinical trial selection. Not only does that mean we'll have a chronic SCI community that is fit and primed for new treatments but we'll also have a scalable rehabilitation infrastructure to supplement the new treatments of the future.

Here and here are some background pieces on NRN-related research. I have also reported on the basic science that is the foundation for activity-based therapies and the NRN training protocols. There’s a lot remaining to understand about activity and training, and who benefits from what amount of intervention. So far, the medical literature is mainly focused on patients with incomplete injuries. There are many anecdotal reports, of course, that those with complete injuries benefit too, not in walking function but perhaps in managing autonomic functions (sweating, bowel or bladder control, etc.) or with cardiovascular fitness.

Says Harvey:

From our perspective, we can do as much with a complete injury as an incomplete injury, as there is value to be had from stimulating the nervous system with a variety of sensory cues. Whether that be through standing or other weight bearing, stepping (treadmill or overground), vibration, vocal cues (trainers shouting commands), visual cues (mirror feedback, computer screens, virtual reality or even simple lines drawn on floor) and electrical stimulation.

What’s next for Neurokinex? Harvey says there are plans to roll out facilities in Leeds, Glasgow and possibly Dublin. He also hopes to prove to government funders that an investment in health and fitness will save money in the long term.

We are working hard to make a case to demonstrate that by taking a progressive approach to rehabilitation and wellness in the community setting we can actually save our National Health Service a lot of resources in the long-term by reducing hospital re-admittances for pressure sores and bone fractures, whilst bringing down the cost of care and medicinal intake. This health economics angle is incredibly important to us as for some, even at the competitive tariffs we offer, participation is not fully accessible. We need to change this to give everyone a fighting chance to recover more function, get fitter, stronger and more prepared for the future!

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About the Author - Sam Maddox

Sam Maddox

The opinions expressed in these blogs are the author's own and do not necessarily reflect the views of the Christopher & Dana Reeve Foundation.