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‘Is spinal cord injury curable? Yes, it is’

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As chief executive of Spinal Research, Harvey Sihota is helping to advance global efforts to develop treatments for paralysis through its funding of medical research. Here, Harvey tells NR Times why efforts to turn academic ideas into commercial realities must be stepped up, and how investment is crucial to that

 

Back in 2009, when a freak accident led to Harvey Sihota being left paralysed, the outlook for spinal cord injury patients being able to walk again was less than optimistic. 

“It was considered to be final, a lifelong condition. When the consultant came to my hospital bed and told me I’d never walk again, it was very black and white,” he recalls. 

“Everything seemed to be going through my head at a million miles an hour, but the overriding feeling I had was one of being a rebel, of thinking I’ll prove them wrong.

“While this was the opinion of this doctor, I knew there were other doctors in the world, researchers who could give me a different outlook. 

“I’m a technologist and futurist, and while there was a real chaotic cocktail of emotions for me, as well as my friends and family, I wanted to be that rebel who would show what could be possible.” 

With a background in credit risk IT in the City of London, Harvey took the skills that enabled him to thrive in such a progressive and forward-thinking area of business and applied them to the reality for him and so many others. 

“Having researched where I could go and what rehab programmes I could try, I realised the best opportunities were in other countries. The US and Switzerland were well ahead when it came to rehab after spinal cord injury,” says Harvey. 

“I believed strongly in the need for rehabilitation, with constant challenge of the nervous system. While I did contemplate moving to the US, I wanted to create something here.” 

That ‘something’ was Neurokinex, the cutting-edge rehab facility inspired by neuroscience, which devises specific programmes for spinal cord injury patients to motivate their whole bodies, optimising the strength and endurance of functioning muscles, while stimulating the muscles that have been most affected by injury or neurological condition.

The award-winning business, which operates from three sites across the South of England, has been credited with giving new hope to people for whom paralysis was considered a permanent state. 

“It was modelled on the best in breed of what I’d seen at home and abroad and we continue to improve and progress what we do with the best science and practice. We’re creating a culture of innovation,” says Harvey. 

Keen to continue to disrupt and change the acceptance of this ‘lifelong’ condition, and use science as a means to do that, Harvey’s role as chief executive of Spinal Research is enabling him to do that. 

“Is spinal cord injury curable? Yes, it is. But the challenge now is the delivery part,” says Harvey. 

But the key, he believes, is turning science into commercial opportunities.

In partnership with the Christopher and Dana Reeve Foundation, Spinal Research is hoping to create a fund – bringing in other international partners and Foundations along the way – to support university spin-outs and businesses to advance their work further.  

“Sometimes science can be seen as slow, but there are always things that can be done. You don’t need to be a scientist to have a role in accelerating processes,” he says. 

“In 2009, when you Googled spinal cord injury and the answer was apparently stem cells, which seemed to be the answer for everything then, now, we understand the pathways and circuitry, we know how they react and evolve and are regenerated. 

“The understanding of biology has come on so much, and academia have done a great job of driving that – but where we fall down is turning that science into a product or a clinical trial. 

“The spinal cord injury market is not as big or attractive to big or even mid-sized biotech businesses as in wider healthcare, and it’s taking some really courageous entrepreneurs to extract the ideas out of institutions and turn them into products. 

“We need tens of millions of pounds to be injected to bridge this gap between academia and commercialisation – and sadly, we can’t do that with marathons, bake sales and Christmas cards. 

“But what we are doing is designing a fund that can support these early-stage companies get to the next stage of delivery. Spinal Research and the Reeve Foundation working together, with all of the expertise and great scientists in our network, can give the best and most efficient platform to create and deliver projects. 

“And if we are rewarded for that in terms of a return, then that becomes self-fulfilling.” 

One venture to already receive such backing is ONWARD, which is developing two products to deliver life-changing outcomes for spinal cord injured people, the first of which could be commercially available by 2023.

“This is really exciting and is probably one of the first breakthroughs likely to change the way we treat spinal cord injury for decades. The potential impact is huge,” says Harvey. 

“But I do think there’s an element of fatigue in the spinal cord injury community over timescales being put on these kinds of developments – that’s why people aren’t jumping for joy just yet. 

“People who have lived with their injury for a long time think they’ve heard this before – but the big difference now is the advances in research and development, in how science becomes medicine. Educating the community about that is a fundamental requirement.

“I’d describe myself as a delivery person, I like to get things done. At Neurokinex, we all had to roll our sleeves up to get the results, and the same goes now.

“There’s a saying that ‘ideas are cheap’ and I think that’s true. Part of the challenge is changing hearts and minds, inspiring people and bringing them along with you.” 

Through creating new networks of change-makers in the UK, then concepts can become reality, says Harvey. 

“The focus for the UK is to create the infrastructure that follows from our scientific and academic base, which we currently lack. We need to be ready to deliver the clinical trials, for clinical services to be ready to deploy innovation. 

“If we want to attract industry to the UK to invest in spinal cord industry business startups, one of the key parts of delivery is the clinical trial, but we don’t have the networks set up for that. 

“The NHS does a really good job with funding the trials, but in the clinical trial network there’s a big gap. Companies may choose to base overseas, run trials elsewhere, and we’ll lose the opportunity. Money that we may have raised here is being diverted abroad.

“We really need to create a network of important clinicians who want to come together and build the case for increasing the funding for clinical trial infrastructure – of the spinal cord injury centres in the UK, how many could be enhanced to run a trial? 

“If the will and co-ordination come together, then we can make a compelling case to ask for the funding to raise the standard of existing centres – that’s the only way we are going to be in a position to run those clinical trials here.” 

 

News

‘This isn’t a threat – it’s an opportunity for revolutionary change’

Writing for HT World, Brian O’Shea, continuing healthcare advisor at the Spinal Injuries Association, urges commissioners to embrace change for the good of the patient.

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As a service user and patient advocate, I believe it’s important to always consider the patient perspective of going through the NHS Continuing Healthcare (CHC) process.

I think it’s important to recognise that when people encounter the CHC or local authority assessment process, it is more often than not the first time that they’ve engaged with the health and social care system.

This usually results in an overwhelming experience for patients, or their carers, as they have so many questions about the process.

It can therefore appear to CCG or CHC advisors that patient questions don’t really arise in a logical flow or sequence. They will often ask questions as they emerge in their minds, for example, “How does this thing work and how can I make sure my voice is heard?

What’s happened so far in the process? What happens next?” However, the most frequently asked question about the process is, “Who can I speak to?”

Brian O’Shea

It is really important to think of this experience not only from the individual patient’s perspective but also from anyone who is working with them to get through it, whether that is an advocacy organisation such as SIA or simply an interested relative.

Quite often when a patient or their relative contacts us, we start to ask them what we think are simple questions: Where are you? Have you had a check list done?

Have you had a referral made? However, as it is often their first experience dealing with the health and social care system, they just don’t know the answers.

Using a patient portal

Previous NHS CHC improvement initiatives have focused on answering this question by allocating a case worker to take individuals through the end-to-end NHS CHC process.

However, we know that this falls down because the individuals managing the process leave the NHS organisation handling the individual’s application, or there is a change in the contact details of the CCG etc.

And there are many more factors and variables that can disrupt the communications between the individual and the CCG, leaving the individual in the maze or even worse, just in the void.

And so, I think digitisation in this area of healthcare delivery is tremendously exciting.

I think that, through the trials of the last year, we have seen how empowering the move over to digitisation can be across the whole of the health and social care sector – when it is done properly.

In this spirit I see a patient portal as a potential solution to many of the questions the CHC process brings up for both patients and CCGs.

We once asked as an industry, “How do you address the issue of having a dedicated individual to take the patient through the assessment and care plan process from end-to-end?”

Well, the answer may just be that you don’t actually need an individual to take the patient through the process, maybe that can be achieved by a digital platform.

There is also a growing awareness amongst patients of the amount of personal information the NHS holds.

I think that one of the advantages of the patient portal on the digital platform, particularly demonstrated in the Digital CHC by IEG4, is that the CCG can make the data more transparent to patients and families.

Sharing the assessment information and the discussions from the MDT meeting builds trust in the process and ensures that patients and families are at the heart of the CHC decisions.

However, having a patient portal is not necessarily throwing open the doors and having absolutely no control of the information between the patient and the heart of the NHS. It is more about understanding the information that an individual needs to generate trust in the NHS CHC assessment process.

As advocates we recognise that, for some patients, if you gave them access to everything it could be just as overwhelming as not giving access to any information. So, it is important for the CCG to build flexibility into their digital platform and strike the appropriate balance for each individual patient.

An additional advantage with a digital platform, is that you don’t have to wait for 9-5 office hours to get an answer to your questions, you can access the information yourself at a time to suit you.

The platform can answer the questions of who has already been involved and who is going to be involved, what the next steps are, and it can also keep track of what’s already been done. No chasing telephone calls taking up time of health and care professionals and an ability for patients and family members to take control.

The Future’s bright, the future’s digital

The path to the digitisation of healthcare services has not been straight forward, and there is still some work to be done in ensuring that safety sits atop the agendas of CCGs when it comes to its adoption, however seeing how platforms like IEG4 take steps to improve this is encouraging.

Both as a patient and as a patient advocate, I cannot tell you how excited I am about the move to digitisation of Continuing Healthcare.

I honestly think it has the potential to be revolutionary.  I think that when used appropriately by CCGs it could be a revolutionary step forward in the quality of decisions made, in the amount of time that it takes to make decisions and it has the potential to be revolutionary for the individual patient experience of the NHS CHC assessment process.

I would really encourage CCGs and local authorities not to see it as a threat. To me it is just such a great opportunity and I think it is really pivotal in changing how we engage with Continuing Healthcare.

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Neuro physio

Changing outlooks and redefining possibilities

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Established using best practice in spinal cord injury therapy from around the world, the rehabilitation offered by Neurokinex is helping to redefine the possibilities for people living with paralysis. NR Times learns more about its neuroscience-inspired work

 

“We want to help change people’s outlook on life.”

Jane Symonds’ summary of the work of Neurokinex, and its approach to redefining possibilities for people living with paralysis, is a powerful one. 

For aside from the work the rehab provider does with patients physically, using techniques to stimulate the whole body rather than only the functional areas, the impact its neuroscience-inspired approach has mentally is possibly even greater. 

In enabling people who are paralysed to have hope that one day they may walk again or at least make significant gains in their mobility and independence – and being at the cutting edge of developments which could enable this – Neurokinex is inspiring patients from well beyond the geographical reach of its centres in Hemel Hempstead, Gatwick and Bristol. 

Founded in 2013 by Harvey Sihota, now chief executive of Spinal Research who himself lives with spinal cord injury, not-for-profit Neurokinex was born from his extensive research into best practice and latest innovation in spinal cord injury therapies from around the world, to give hope and renewed confidence to those living with paralysis. 

“I think the biggest thing is the difference in outlook,” says Jane, clinical lead physiotherapist at Neurokinex. 

“Most people who come to us have been injured relatively recently, although some people have lived with paralysis for quite a long time. Some are elderly and we also work with children but whatever their age, the realisation of what they can do and can achieve is huge.

“We do have some tears when we see what can be possible, it’s very moving. To see people regaining their confidence during their time with us, so they want to go out again or feel they can return to work or get back to driving, is very special. We want people to live their lives to the full once again.”  

Progress, particularly in terms of their outlook and expectations, is something the Neurokinex team is committed to supporting people to achieve, says Jane. 

“The expectations are quite low among people when they first come to us, many of whom have just come out of hospital,” she says. 

“Hospitals are really cautious in their approach, and don’t want to give false hope, which is understandable – but hope is so important.

“Several of our team are used to doing rehab with professional sports players. They take that expectation of what people can do with the right mindset, combine it with the power of encouragement that enables people to achieve, and applied it to what they do here. 

“I worked in a spinal unit for eight years and found it quite frustrating that when people left, they were considered rehabbed and done. But they weren’t as fit and strong as they could be, their function wasn’t as good as it could be and with the right support they could do so much more. 

“Often it can be the case that people leave their daily physio in hospital and then face anything up to an 18 week wait for their community provision to begin. 

“Without the right support, it’s easy for people to go backwards, to lose any progress they had made and put on weight, experience pressure sores, and a whole host of other consequences. It’s very hard to regain what is lost. 

“But with intervention, they can make great progress. Through working with our team, we can help make gains in their function, strength and endurance, which can have a hugely positive impact on people’s lives.” 

And as part of its commitment to delivering the very latest innovation to its clients, Neurokinex is part of trials of technology developed by ONWARD, expected to commercialise as early as 2023, which is set to enable paralysed patients to regain movement. 

“We’re really hopeful this will make a difference and it is very interesting to be part of this study. We are always looking to what can be done to change the lives and outlooks of people living with paralysis,” says Jane. 

“Our approach is inspired by what Harvey created here. He constantly surprises us with what he achieves. He is so positive and to him nothing is impossible. That’s what we try to instil in the people we work with.” 

Whilst striving to offer cost-effective services, part of the not-for-profit enterprise’s work is funded by the Neurokinex Charitable Trust, with fundraising activities helping to sustain its work. 

One of its key initiatives in accessibility is the Step Up Scheme, which offers six free sessions following NHS referral.

“Through the Step Up Scheme, we underwrite the costs of those six sessions as we don’t want anyone to be excluded through cost, and we appreciate it is very hard for those who have to self-fund,” says Jane. 

“Every year we are growing in numbers, which is fantastic, but we have to work harder to find ways to sustain that.

“With COVID, we were very worried about losing the scheme, but we had a big fundraising appeal which lots of our clients got involved with, and that raised over £50,000 which meant we could continue. 

“Our paediatric area in Gatwick was also created through fundraising.  It’s a lovely space which challenges kids while keeping them safe. That was a big project for us but one which is so well used and valued, and we’ll keep on developing what we can offer through generating the means to do that.”  

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News

ONWARD secures $32m to advance spinal tech innovation

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Health tech business ONWARD has secured $32m in financing to help advance its world-leading work in spinal cord injury technology and push on towards commercialisation from 2023. 

Through the development of its ARC EX and ARC IM technologies, ONWARD is making significant strides towards delivering the long-awaited life-changing outcomes for people living with paralysis. 

And with its latest fundraising round, its work in developing and commercialising its ARC technologies moves further towards becoming reality. 

The round was led by Invest-NL, the Dutch impact investor, and Olympic Investments, the private investment arm of the Onassis Foundation. Several additional new investors and all of ONWARD’s existing investors also participated in the financing, including medical technology investors LSP, INKEF Capital, Gimv, and Wellington Partners.

“We are deeply committed to developing and commercialising research breakthroughs, bringing them out of the laboratory and into the clinic,” said Dave Marver, chief executive of ONWARD. 

“This funding will enable ONWARD to sustain our quest to help people with spinal cord injury enjoy life in every way that matters to them.”

Previously, Dave has spoken to NR Times about how its ARC EX device is expected to be commercially available in late 2023, with its Up-LIFT trial underway in the UK – at the Queen Elizabeth University Hospital in Glasgow – United States, Canada and the Netherlands,. 

An external, non-invasive platform, the ARC EX is set to deliver movement and strength in the hands and upper body of people with spinal cord injury, compared to rehabilitation training alone.

And in one of the most keenly-awaited health tech breakthroughs of recent years, its ARC IM technology – an implantable pulse generator and lead which stimulates the spinal cord and is controlled by wearable components and a smartwatch – is set to go into trials mid next year, with its commercial launch anticipated in 2024.

Both platforms are designed to deliver targeted, programmed stimulation of the spinal cord to restore movement, independence, and health in people with spinal cord injury, ultimately improving their quality of life. 

ARC-IM and ARC-EX have each been awarded Breakthrough Device Designation by the FDA.

“ONWARD’s ARC Therapies have the potential to significantly improve outcomes for those living with spinal cord injury,” said John de Koning, partner at LSP. 

“The company’s ability to attract several prominent new investors and the broad participation of its existing shareholders demonstrates our expectations that the company has the technology, the team, and the promise to grow into a large and enduring business.”

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