From the devastation of Luke Parry’s brain injury has come Neumind, a solution which is set to support countless families across the world in living and coping with neurological illnesses and injuries.
Neumind has been created to improve access to specialist neurorehabilitation and support people with Acquired Brain Injury (ABI) in the practicalities of their everyday lives.
Through Alfred – a mobile app which takes its name from Batman’s assistant – a host of therapies and resources can be accessed to support the recovery and independence of brain injury survivors, while connecting and educating loved-ones in helping them achieve this.
And while now in its final development stages and heading for trial with survivors and their families in the UK, the creation of revolutionary Alfred has been enabled by its chief product tester – Luke.
It was in 2012 when Luke, then a student at Oxford University, was seriously injured after a fall from height. Sustaining a serious brain injury, the initial prognosis was that he was unlikely to ever walk or talk again.
“I call that time the ‘dark days’. I don’t remember much, but from the photos and my diary, I know it was a really tough period for me and my family,” he recalls.
Happily, Luke has defied all expectations – and is even in the development squad for the 2024 Paralympics, which gives an indication to the extent he has overcome his initial prognosis – but his recovery has not been without significant trauma for both him and his family in adapting to their new lives, compounded by a realisation of the lack of access to specialist resources.
“Soon after someone you love has experienced this kind of injury, as a family you realise everything has been turned upside down. It takes a while to understand the new dynamics and how you can contribute as a caregiver and family member,” says Dr Ellis Parry, Luke’s identical twin brother and CEO of Neumind.
“While you’re adapting to that, you realise what support is and isn’t available for both your loved-one and for your family. Statistics indicate that 70 per cent of people with ABI don’t get adequate inpatient rehab, and actually, inpatient is the best rehab that we provide.
“So following that initial rehab, you’re in the community pathway, which now because of COVID, can have a waiting list of up to a year. The average we’re seeing is eight months, which is just crazy. And that’s really when someone needs input, but it tends to be one session a month, and there’s no way anything is going to land in that one hour session. People are desperate, confused, and feel let down by our healthcare system.
“And with the caregivers, who are so critical to achieving the long-term outcomes, they don’t really receive a lot of guidance, training or support.
“So we wanted to explore how we could combine cognitive assistive technology with long-term, low touch support from specialists.”
It was while Luke was an inpatient in the internationally-renowned Oliver Zangwill Centre that Dr Parry began to fully realise the benefits top-class specialist neurorehabilitation could have.
“We had to campaign hard to get Luke in there, because there are only a few NHS spots, but it really opened my eyes to what was possible in rehabilitation and what was missing from the standard pathway. If he didn’t have that, I think we would all be in a very different place to where we are now,” says Dr Parry.
“While he was there, Luke was using a device called Neuropage, which was basically a paging device from the 1990s. It would send practical reminders, while reinforcing certain things that Luke was doing at the centre.
“We realised that was super important for someone with a brain injury, to have constant practice and taking the therapies and concepts into their daily lives.”
From there came the desire to create ‘Neuropage 2.0’ which could build on the principle of the outdated technology and harness the power of modern day technology to create a tool to help survivors get the support they need to adapt to their new lives.
Dr Parry, an Oxford engineering graduate who achieved his PhD in 2020, assembled an equally expert team to help create the memorably-named Alfred.
“Alfred was a code name between Luke and I at first, but it stuck,” he says.
“I think anyone who has survived a TBI goes on a bit of a superhero journey in many ways. You go through that dark period and then find yourself rising from the ashes.”
The multi-faceted app offers a range of resources primarily to the survivor, but also delivers benefits to families and caregivers, alongside healthcare professionals.
Taking the concept of Neuropage to the next level, Alfred uses ‘smart prompts’ – personalised multimedia messages that can be either practical or therapeutic. This versatility means Alfred can be used to support a wide range of cognitive impairments, practically supporting daily-living, as well as stimulating neural pathways associated with memory.
Tackling the issue of access to specialist rehabilitation directly, Neumind are creating a growing library of verified exercises and strategies, which resemble real-life activities and enable re-adjustment to daily life.
Through advanced analytics, Alfred can determine what individuals respond best to, helping to guide the best possible outcomes.
The app enables a person to connect with others, such as caregivers or therapists, who can provide collective support and help them in their progress.
While still a work in progress, Neumind is looking at ways to introduce access to specialists as part of Alfred’s offering, something which is often prevented by cost.
“It can be up to £120 an hour to see a senior psychologist or a senior occupational therapist, and outside of the medico-legal world, most people just can’t pay that much money,” says Dr Parry.
“And in order to get any benefit, you need to do a lot of sessions. And those sessions, if you’re not properly supported cognitively, can go in one ear and out the other.
“So we’ve been exploring different models of how we can provide a more cost effective, longer-term kind of support, and that is something we’re currently developing and are really excited about developing and is still ongoing.”
And the fact its development continues is something the Neumind team are keen to work on collaboratively with those who need it.
With a growing core of regular users – with Luke as “chief tester and biggest critic” – feedback from those with lived experience is crucial to Alfred being the solution Dr Parry hopes it will ultimately become.
“We want to understand the kind of problems people face at the deepest level,” he says.
“Brain injury unfortunately doesn’t get the recognition and doesn’t get the investment. In order to innovate in this area, there are no clear funding streams. It’s really difficult.
“And the diversity of people’s problems also means that the solution isn’t simple. We’ve worked with some other startups who work in, for example, tinnitus, such single symptom, single intervention applications are much smaller, much simpler to develop.
“Brain injury needs and deserves its own set of tools – but if you take a look at the NHS recommended apps, there’s 15 different categories of apps for someone with brain injury. And inside each category has maybe five or six different apps. There’s nothing for brain injury, they’re all generic apps which tackle fatigue, or memory, things in isolation.
“For most people with brain injury, they’ll probably have like several issues in these areas, which might mean they have to download 20 apps, and somehow figure out how to use them together.
“So for us, for Alfred to be exactly what people want and need, we need to continually learn from the experiences of others.
“We want to build something really special and to do this, we need passionate early users and supporters who share our mission.”
To have the opportunity of using Alfred and stay updated with its progress, visit here
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