From being a London-based community group, LEGS has now taken that sense of community onto a national scale by moving its neurophysio exercise sessions online. NR Times finds out about its expansion.
Having gone into the pandemic as a small community exercise group for people with neurological conditions, LEGS has now become an online rehab resource for people throughout the UK.
Initially holding sessions in a studio in Westminster, enabling people from the surrounding area to access its specialist physio-led supported exercise and social opportunities, its rapid transition to taking sessions online has seen the LEGS operation having to grow in tandem.
From two sessions a week pre-pandemic, LEGS has now ramped up its offering to ten online classes.
Participants come from as far afield as Northern Ireland, with the original community of people from Westminster and Kensington and Chelsea now becoming a truly national community, whose relationship continues to be built via interactive Zoom rehab sessions and a thriving WhatsApp social group.
And by thinking creatively, the charity has managed to access a number of funding opportunities, which has enabled the purchase of tablets for those who would otherwise be without the technology to allow them to join sessions.
A grant from the National Lottery allowed LEGS to increase its numbers of online sessions, while also enabling the creation of a London-based supported walking group.
“We’re a really small team but the demand we have seen since taking our classes online has meant we’ve had to work very creatively,” says Sarah Sparkes, lead physiotherapist at LEGS.
“In a matter of days, our online programme was created. Our research revealed Zoom was the best platform for people with cognitive difficulties, so very shortly afterwards, our online classes were born.
“But having previously held two a week in-person, the demand was very shortly there for that to increase to ten.
“The response has been amazing – we have participants from Northern Ireland and Lincolnshire, which has given a whole new definition to the community we’ve always worked so hard to help create. And through being able to provide the technology to those who would otherwise not be able to access our sessions, we’ve been able to include them too. We know that has made a massive difference.
“Our Twitter followers have also increased from around 80 pre-pandemic to well over 600 now, so we’re building a new community on there, too.”
And the community LEGS has helped to create is thriving, with participants seeing positive outcomes of their sessions.
“We do a physical assessment whenever someone joins and that is repeated at 12 weeks. We are seeing some great progress, the quality of engagement we’ve seen through doing sessions online has been great,” says Sarah, who combines her role at LEGS with working at St George’s Hospital in London.
“We were a bit concerned at first when we went online, as our sessions are £5 each, and there is so much free content out there. But we have realised that so many people realise the benefit of a professional doing their class, who tailors the sessions to their needs.
“We got some great reaction to our sessions, and we’ve found that most people like to have their sessions on gallery view – I think there’s a nice sense of support but also allows people to challenge themselves. If they see someone else doing something, it often spurs them on to be able to do it too.
“The relationships that have already been built are great. Sometimes I’ll come out of a shift at St George’s and there will be a huge amount of messages on the WhatsApp group to get through – it’s very vibrant and people are so keen to share the progress they’ve made, like they’ve managed a flight of stairs today. It’s very nice to be part of that.”
Going forward, while LEGS has not traditionally operated an online model, an online element will certainly continue, says Sarah.
“We’ll be adopting a blended approach, as we’ve seen how well it can work, I’m not sure I thought physio over Zoom could work so well but it has done,” says Sarah.
“From not really knowing how it would go, we have held Christmas and summer parties over Zoom, in addition to our classes, which continue to be so well received.
“We will definitely keep going with the online work, although will hopefully be able to return to face to face. There are so many people who have joined in with, and benefited from, our sessions during the past few months and we’ll continue to support them however we can.”
Where does rehabilitation start and end?
Defining when rehabilitation should start seems straightforward.
As soon as an individual is medically stable, evidence shows that it is beneficial for rehabilitation to begin. Starting at this earliest opportunity helps to minimise the effects of deconditioning and inactivity and reduce the risk of pressure sores and contractures. Defining the length of rehabilitation, however, and when it should ‘end’ is more tricky and continues to be subject to debate.
Over the years, guidance has been suggested for the timeframes of rehabilitation. With spinal cord injury, it has been said that the greatest recovery happens in the first six months following injury. It is also commonly cited that after two years it is unlikely for further recovery to occur. However, medical advances and breakthroughs in research are changing this. New and emerging technologies such as spinal cord stimulation are demonstrating that even in chronic injury, the nervous system has the ability for neuroplasticity long after two years post-injury.
Goal setting is a commonly used and exceedingly popular method of guiding length of rehabilitation. This ensures that interventions are guided towards achievements that are meaningful both to the individual and the service provider. However, alongside the physical and psychological needs of the individual, there are many other factors that can impact on the length of rehabilitation, such as their geographical location and circumstances. Service availability, financial constraints and family responsibilities can also all impact on someone’s rehabilitation journey.
Lessons from lockdown
Experience from the Covid-19 pandemic too has given a greater insight into the impact of disruption to rehabilitation.
At Neurokinex, we shut our doors in March 2020 for just over three months when the first UK-wide lockdown was announced. This meant a temporary curtailment to the rehabilitation of all the individuals with whom we worked. When we resumed our activities in July 2020, it gave us first-hand insight into the impact of suspending rehab.
We are well aware of the many consequences of being inactive, but following the lockdown, what we noticed in our clients was wide-ranging. Unsurprisingly, many clients had lost some of their fitness, stamina and endurance and, like a large proportion of the population, many reported that it had been difficult to keep their weight under control.
Alongside this and more worryingly, we saw losses in hard-earned function that had been gained over preceding months and a reduction in confidence with activities that are vital for independence in daily life. This was all despite the fact we provided virtual exercise programmes to follow at home during the lockdown period.
Reflecting on the impact of the temporary halt to rehabilitation influenced our decision to keep our doors open with strict Covid-19 measures in place during the second and third lockdowns. Our clients were hugely relieved by this as many wanted their rehabilitation to continue.
The enforced period of closure also made us think about the challenge faced by individuals with neurological conditions throughout their lives.
Those living with such a condition have, effectively, to commit to life-long rehabilitation in order to manage their symptoms and maintain the gains that they achieve. Even just maintaining a steady level of function requires a significant level of commitment and motivation.
With a neurological condition, individuals need to ensure that they stretch sufficiently to manage spasticity and avoid developing contractures that can limit their function. They need to dedicate time to moving their body into positions which alleviate pressure and allow muscles to be stretched for longer periods of time, such as lying prone. They also need to maintain sufficient shoulder strength and control in order to deal with the increased demands on their upper limbs as a result of their injury without developing shoulder injuries which could have knock on effects on their independence and function.
Fitness is also key to be able to push a wheelchair or walk when a proportion of your muscles aren’t functioning fully and reduce the risk of developing cardiovascular disease or diabetes. Then, there’s the need to regularly practice activities that are more challenging so that the confidence and ability to perform these tasks when needed isn’t lost.
All in all, it’s an awful lot for anyone to manage, in addition to the challenges that daily life throws at us. As such, we realise the value of rehabilitation services lies not just in helping individuals to achieve their goals, but also to develop the right mindset and confidence to manage these challenges throughout their life.
For those commissioning services, my message would be quite simply that rehabilitation for neurological conditions should never ‘end’. Lifelong support and follow-up are vital to helping individuals stay on top of their symptoms, optimise their function and independence and minimise the impact that their condition can have on their lives.
Why does exercise intensity matter?
Intensity is essentially the amount of work you do in a given period of time using these four components of exercise – Load, Distance, Speed and Time.
For example, with resistance training, this could be measured by how much load/weight you move, how far it is moved, how quickly it is moved and how long that weight was moved for. Using this understanding, a larger load moved more quickly will be recognised as being completed at a higher intensity than if one of those components was less.
Knowing the intensity a client can work at allows you to apply overload which is where you increase intensity to permit a physiological adaptation.
Tools to track intensity
- Metrics – measuring how much weight a person lifts, how quickly they push/run or how far/long they move, all provide comparable data to measure progression
- Rate of Perceived Exertion (RPE) – this is based on observing the body’s physical signs during physical activity. This can be tracked in a simple 1-10 rating scale. For example, if a client is at a very comfortable level of exertion during physical activity, they’d consider this a 4 or 5/10. However, if they are sweating a lot and feeling breathless, this might be considered level 8 or 9.
- Talk Test – this is a very easy test to figure out intensity – you just pay attention to how breathless your client is. If they can easily talk, they’re working at a light intensity. If they can talk, but it’s a little harder, they’re getting more into the moderate zone.
- Wearable technology – the heart rate will increase in proportion to the intensity of the exercise as a natural response. As heart rate monitors and fitness trackers are becoming more and more readily available, they can provide a more accurate way to measure intensity in real time, allowing you to adjust your client’s effort and measure their performance during the session/exercise.
How hard should you work?
That answer will vary greatly from person to person and the level of intensity should be tailored to the individual. While intensity can range from low to moderate and high, an estimate of a person’s maximum heart rate (MHR) can be calculated as 220 beats per minute (BPM) minus their age.
Target heart rate for moderate intensity activities is about 50-70% of MHR, while for vigorous physical activity it’s about 70-85% of MHR using this formula.
Understanding your client
Intensity has to be appropriate in terms of what your client can currently do, as well as matching with their goals.
Asking someone to perform something far beyond their current abilities could possibly have a negative effect on implementing progression in the future. You don’t want to be told “I remember when you pushed me too hard!”
Intensity requires a client’s understanding and trust in you as a trainer to use intensity to help them achieve their goals.
How exercise intensity helps those with neurological conditions
Intensity of exercise has been associated with benefits for individuals who have suffered a neurological injury including enhanced stepping for locomotion with individuals with incomplete spinal cord injuries and improved blood pressure control in individuals with spinal cord injury.
Overall, becoming aware of the intensity of exercise will help you to ensure that you are aligning your client’s health or fitness goals with exercises/activities to facilitate their progression going forward.
- For more information and insight on this topic, speak to the team at Neurokinex
Changing outlooks and redefining possibilities
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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