Political pugilism gave way to a rare outbreak of unity at Westminster recently. An event, in the palatial quarters of Speaker John Bercow, officially celebrated the birth of the All-Party Parliamentary Group for Assistive Technology (APPG AT).
APPGs bring cross-party members together to pursue a particular interest. While they have no official status in Parliament, they can be a catalyst for positive change.
This APPG was initiated by the ACE Centre, which offers augmentative and alternative communication services. Anna Reeves, who runs the charity and was a driving force behind the APPG, says: “We’re focusing on the wider range of people that could benefit from assistive technology, which is rapidly evolving all the time.
“It’s touched a nerve with politicians because they are getting their constituents coming to them expressing frustrations about not having access to the right support that could be life-changing for them.”
Assistive technology (AT) is used by people with a range of conditions, including autism, vision and hearing problems, mobility impairment, learning and cognitive disabilities and manual dexterity difficulties.
Its ongoing advancement offers vast potential; but also presents a number of problems deserving of the APPG’s attention. Among them is the inconsistent provision of access and support across the country.
In 2014, a £15m-a-year injection of funding via NHS England was announced, supporting the provision of equitable services and equipment to children and adults unable to communicate verbally. The establishment of augmentative and alternative communication (AAC) services has made “a massive difference” according to Reeves – but inequalities remain.
“Support is no longer patchy for people with complex needs who require technology to support their verbal communication – for example, those in the latter stages of motor neurone disease or with cerebral palsy with very complex levels of disability. They can all access equitable services and provision across the country, which is fantastic.
“But there are still lots of people who are not eligible for those services. If they have a less complex level of need they might not necessarily get the same level of support or access to the technology. There is also work to be done in terms of giving people who need it, access to a wider range of technology, including computer access at home and access to mobile phone technology, which can be hugely liberating.”
Environmental control systems, which support independent living by enabling tasks like operating curtains, TVs and the front door, should also be more easily accessible, says Reeves.
“There has been an explosion of AT that could make a difference to thousands of people’s lives. However, the benefits of the technology are far wider reaching than just helping people with little or no speech or with complex physical disabilities.
“For example, people in hospital may need such technology temporarily to communicate with the outside world. It can also support children in education, help people with disabilities gain employment and improve independent living. We need a political spotlight to ensure AT is embedded into policy, legislation and funding streams.”
If technology is to help secure jobs for people previously excluded from the workplace, one glaring error must be addressed, says Reeves.
“It seems obvious to me that if you give somebody technology to enable them to show evidence of their potential and their capabilities, then they are more likely to be able to compete on an even playing field in a recruitment situation.
“But as it stands, people can’t get support for the assistive equipment they need to do the job, until they’ve got the job. Surely you need the equipment to be able to prove you can do the job to get it. The system seems back to front.”
Amid cuts to disability benefits and the introduction of tougher eligibility tests in recent years, there may well be an appetite within the APPG to tackle this issue. Certainly early signs suggest AT’s link with employability is near the top of the group’s agenda.
As MP Seema Malhotra (pictured) put it at the APPG launch: “If we are to have a truly equal society then we have to make sure the issue of disability is as much on the agenda of education and the workplace as we have seen with gender and race.”
According to the Resolution Foundation think-tank, 49% of disabled people aged 16–64 were in work last year, compared with 81% of non-disabled people. The disability employment gap—the difference between the employment rates of disabled and non- disabled people – therefore stood at 32 percentage points. Utilising technology to close this gap could have significant economic benefits to the nation; but wouldn’t the sheer cost of the technology be a major barrier in these days of austerity?
“The cost of the technology itself is a bit of a red herring,” says Reeves. “With the obvious reduction of benefits and the increased taxes from getting more people into work, the cost is relatively low, although we need better research and evidence around that topic.”
Reeves sees training implications associated with AT as a bigger barrier than cost issues. “Clearer funding streams for technology would certainly help but I think significant investment is needed in terms of people’s time to develop skills and knowledge of the technologies.”
A lack of the knowledge needed to recommend and support AT usage is particularly evident in schools.
“We go to schools all the time and see equipment that could be life-changing for some children, but the staff don’t know how to use it, so it gets shoved to the back of a cupboard.
“It’s not as straightforward as the schools not having enough money. The equipment is already there in many instances but is not necessarily used as well as it should be. There have been lots of cuts to services supporting schools at a local authority level and schools have become more independent and in control of their own budgets.
“I think there is a risk that children with special educational needs and disabilities may not be prioritised for the provision they need. But also, the expertise isn’t available to the schools about what technology is out there, and what a difference it could make to certain children.”
Reeves would like to see more training opportunities offered to a range of professionals about AT. Teachers, speech and language professionals, occupational therapists, school technicians, support staff working with adults in care and special educational needs co-ordinators would all benefit, she says.
Such courses are often poorly attended and not prioritised by time-starved professionals and their bosses, however. It is hoped the APPG will help to switch more professionals onto the value of AT and generate more demand for AT-related training.
Reeves also recognises the need for clearer and more detailed evidence about the power of AT.
“There needs to be more research into this area and we need a better understanding of what AT can do to support people. We need to know how many people need it, what that costs and what difference it makes. We haven’t got the research to answer those basic questions. We’d like to get more academic institutions involved, although it’s quite difficult to identify funding streams where this could fit in.”
Funding to support innovation and new product development in AT is similarly strained. Often AT products have been spawned from technology used in more commercially-driven markets.
“Investors are usually looking to develop technology with a wide range of benefits, not just for people with disabilities, as the funding is just not there to develop it. Eye-gaze technology is used a lot in supermarkets to understand where customers are looking on the shelves, for example. At the same time, it can be life-changing for people with no other movement than their eyes.”
Research and development will no doubt be one of many discussion points for the APPG once its work takes shape.
Follow the group’s progress online at policyconnect.org.uk.
The APPG AT is chaired by Labour and Co-operative Party MP Seema Malhotra, who represents Feltham and Heston.
She is also a member of the Parliamentary Select Committee on Exiting the European Union. She recently served as Shadow Chief Secretary to the Treasury and continues to keep an interest in economic affairs, productivity, how growth and prosperity can be shared and youth educational achievement.
The group is co-chaired by Lord Holmes of Richmond, MBE, one of Britain’s greatest Paralympians, amassing nine gold, five silver and one bronze medal across four games, including a record haul of six golds in Barcelona in 1992.
His fellow co-chairs are Lord Low of Dalston CBE – a lifelong campaigner for the rights of blind and disabled people – and Conservative MP Matt Warman, who represents Boston and Skegness.
Other parliamentarians in the APPG include MPs John Cryer, Neil Coyle, Barry Sheerman and Bill Esterton. Universities, technology firms and charities are among several organisations supporting the group.
Adventures in online conferencing
Merryn Dowson, of rehab goal-setting platform Goal Manager, on why the virtual conference should endure long after COVID-19’s limitations are gone.
Just in case you hadn’t noticed, the last year has been a little bit different from previous years and by ‘different’ I, of course, mean ‘online’.
Conferences have been no exception. Instead of arriving at a large hall, picking up the first of the day’s seven coffees and scanning the room for the best pens on offer, we are finishing off our morning routines and setting our out-of-office email only to sit in the same chair and log in to an online virtual conference.
In March we may have hoped that these conferences would actually happen in person and that the world would quickly get back on its axis but we soon realised that this would not be the case.
We were to access it all from our computers, perched wherever we can manage in our homes.
In August, I had my first taste of this unprecedented, socially- distanced, new-normal approach to conferences by logging on to that of the American Psychological Association (APA).
For many, a previously inaccessible conference due to travel and registration fees, this year it was beamed on to my laptop at a comparatively low cost.
Not only that but, unlike at physical conferences, I did not have worry about rushing from room to room, all of my belongings slung over my arm (including a tote bag of the aforementioned pens), hoping to make it on time to the next talk I had circled in the programme.
I was able to click freely between ‘rooms’, catching the end of the talks while the kettle boiled in anticipation of the next speaker. I made notes from the comfort of my desk, no balancing a free notepad on my knee.
It was refreshing. Even if I missed a talk because I dipped back into some work (another luxury of the online conference), I was safe in the knowledge that it remains online for the rest of the year to be viewed at my leisure.
I had the privilege of seeing this from the presenter side too. In October, Dr Penny Trayner, Dr Andrew Bateman and I delivered an instructional course on best-practice goal setting in clinical practice at the annual conference of the American Congress of Rehabilitation Medicine (ACRM).
Although a complex presentation involving multiple presenters and real-world video examples, unusually, there was no sense of trepidation about everything going to plan because, like the other presenters, we had already submitted a video of the entire workshop to be broadcast right on time.
There was simply a sense of calm excitement. We were able to join the attendees in the live discussion chat, respond immediately to questions and follow the buzz on Twitter.
We were even able to ask participants to log in to Goal Manager, a cloud-based platform for facilitating the key processes of goal setting, and ‘follow along’ with a case example by filling out a patient profile using the knowledge and skills developed during the course.
This would not have been as accessible had everyone been gathered in a room, rather than sat at their computers. At the end, we hosted a live Q+A with the workshop participants and it truly had that sense of community that we all attend conferences for, connecting everyone with a shared interest live from their living rooms across the globe.
This continued throughout the conference including the poster presentations. As we well know, posters are often presented in the same room as a substantial lunch and, occasionally, complementary wine. This can make it slightly difficult to having a meaningful discussion with someone about their life’s work and the next huge contribution to neurorehabilitation.
Instead, this year’s posters were displayed on screen with a short pre-recorded narration of key themes and findings.
Dr Trayner and I presented an evaluation of real world systemic interventions run within Clinical Neuropsychology Services and we were able to give much more of an insight into the bootcamp we ran, the parenting course we delivered, and the DJ skills programme that Dr Trayner has helped to coordinate.
We were able to answer questions on these interventions both during the poster presentation and for a while afterwards on social media as people continued to revisit all of the posters long after each session. This meant that we too were able to see others’ posters and ask them questions. Everything was at our fingertips.
Of course, I describe all of this understanding its overwhelming sense of novelty.
While I have very much enjoyed learning about the latest developments in our field while wearing considerably more comfortable trousers than I would permit myself to wear in public, I would love to be in a room with the innovators, pioneers and trailblazers of neurorehabilitation, each eager to share new ideas (not forgetting the free pens – have I mentioned those?).
Networks are built at these events that go on to forge lasting collaborations and amazing developments.
Whereas academia and specialised clinical work can often exist in silos across the country, continent and world, conferences bring everyone together.
I look forward to the next event that is held in person however I do hope that not everything from this new world is discarded too quickly. This year has shown us how so many barriers to access can be broken down just by a few additions. The option for online attendance has provided entry to previously inaccessible events; the ability to re-watch talks for months afterwards has taken away the pressure of cramming hours of content into a few days while abandoning all other commitments. More people have access to the discussions and ideas shared than ever before. I hope the concessions that allow this to happen remain long after the many advantages to physical conferences resume.
In the meantime, however, I enjoy the literal home comforts that this new age of conferences brings.
As you read this article, I will have recently attended the Time For Change Online Summit by the UK Acquired Brain Injury Forum (UKABIF) with my cat on my lap and my favourite mug in hand.
At least for the time being, that is something to be enjoyed. Until I run out of pens.
Tackling the self-report shortfall
How new technology could revolutionise the way patients self-report their symptoms – improving outcomes and research capabilities in neuro-rehab and other fields.
‘Patient-centred’ has become a well-worn phrase in neuro-rehab in recent years. In fact, so often is it mentioned by care and therapy providers, that it is starting to mean different things to different people, running the risk of becoming meaningless.
Of course, in healthcare the patient should, indeed, be at the heart of everything. If self-report mechanisms are flawed, however, can we really say that this is the case?
A new platform is addressing this by changing how patients are able to self-report their symptoms, adopting a real-time approach and presenting new possibilities for rehab teams.
Self-reporting in neuro-rehab can be vitally important. Without it, multidisciplinary teams (MDTs) may struggle to accurately assess a patient’s pain levels or discover key aspects of their wellbeing. It can be particularly challenging in brain conditions, however; with behavioural changes, fatigue and memory problems among several factors that might affect an individual’s ability to relay how they are feeling.
With stroke diagnosis, for instance, studies have found that while self-reporting ‘may be a useful screening tool to identify potential stroke disease in prospective studies, it is not accurate enough on its own to confirm cases.’ (Woodfield et al, 2015).
Furthermore, a 2010 study into self-reported cognitive symptoms following mild traumatic brain injury in US veterans found that ‘self-reported cognitive functioning is significantly related to psychiatric symptoms and clinicians should appreciate this limitation’ (Spencer et al, 2010).
A new platform has been borne out of recognition of such challenges, harnessing digital tech to allow real- time and accurate self-reporting.
It could help to improve the way the progress of neuro-rehab patients is tracked and the ease at which vital neurological research can be carried out.
Tiyga, an acronym for Time Is Your Greatest Asset, is a cloud-based system that enables clinicians to capture patient diary data and monitor progress of symptoms over days, weeks and months – via an easy-to-use application.
So far it has successfully been used by the Arthritis Support Group (MSK) and the Pelvic Pain Support Network, amongst others.
The platform helps to bring patient knowledge to healthcare professionals in a timely way. The aim is for healthcare professionals to receive information in near-real time, allowing them to use their knowledge and experience to facilitate problem-solving.
The Tiyga dashboard allows each healthcare professional to create app accounts which are tailored to their patient. These can be configured remotely by clinicians so that their patients are able to report symptoms experienced at any time of day.
They also help to encourage conversations in a language that is relatable and understandable to a greater number of patients.
With all of the data managed in the UK, clinicians can customise the platform for each individual patient, who can then, in turn, report using a bespoke rating.
The option to add free text, explaining in their own words anything else that they consider to be relevant, allows the patient to feel in control and not controlled by a disease.
Neuro patients may have less energy or cognitive ability to navigate complex apps or forms, so Tiyga is specifically designed for ease of use, including for infrequent users of technology.
The patient needs only 20-30 seconds to report how they feel without having the burden of remembering all the details for the next consultation.
The reports are easily shared with members of an MDT, removing the need for the patient to repeat themselves.
As a result, clinicians are able to view a unique, visual diary pattern that helps them to establish timelines and summarise statistics over different time periods.
MDTs spend a high proportion of consultation time on discussing the history of a patient, and the process can be further extended depending on how well the patient recalls their experience or time since the last consultation.
Clinicians can only do their best with information given to them and cannot manage something they are unable to measure – or unaware of.
Real-time input can enhance health outcomes, especially in a neuro-rehab scenario where it isn’t simply a one-off situation involving taking a pill and reporting back at a later date with the results.
This remote connection to professionals with a full understanding of the best treatment options, gives more confidence, helps to reduce anxieties and enables the patient with pre-existing or newly emerging conditions, to respond to the challenges they face.
Experiences such as a migraine flare-up, for example, where there is a sudden and extremely distressing intensity at a certain period of time, may be easier to relay back to physicians accurately at a later date.
Similarly other symptoms that are subjective, such as fatigue or brain fog, may be more difficult to measure in a traditional way.
In these situations, where symptoms vary over time, self-reporting through the app helps to mitigate this obstacle and reduce the potential for recall error that could affect a number of neuro patients.
Katrina Delargy, managing director of Tiyga Health, tells NR Times: “There are a number of symptoms that normally rely on the patient telling the doctor how they have been since their previous appointment.
One of the problems in the neuro area is, if the disease affects somebody’s memory, then it is especially hard for them to remember clearly to give the doctor a clear picture of exactly what has happened.
“Remembering the exact detail is why potential recall error is something that would affect a number of neuro patients.
“This could be used by MDTs, or as a tool as part of clinical research in gathering the data needed from the patient cohort.”
It could also help to capture data from patients during periods when healthcare resources are most stretched such as during the winter, or under the ongoing challenges of COVID-19.
In the case of long Covid, where lingering symptoms such as brain fog and the deterioration of cognitive functioning can last over six months, CT scans may initially look normal or show only slight abnormalities.
Allowing patients’ real-time feedback on these symptoms that are not yet calibrated on medical devices, may help experts identify and explain patterns.
At a time where remote appointments are the norm, self-reporting is another digital tool helping rehab teams to better engage with their patients.
In assisting those who require help re-learning to walk or swallow, for example, real-time, remote feedback could prove invaluable.
While Tiyga may not be the definitive answer to every aspect of the self-report challenge neuro-rehab, it certainly shows lots of promise in delivering truly patient-centred care. NR Times will be monitoring its development in the coming months as healthcare’s digital revolution accelerates.
To find out more email firstname.lastname@example.org
CASE STUDY: The Greater Manchester Neuro Alliance (GMNA)
The GMNA is one of several organisations piloting the Tiyga platform. Here its chair, Deb Troops, explains why she believes it is a much-needed addition to the neuro-rehab professionals’ toolkit.
For us at the GMNA, one of the most exciting things about the platform is that, not only is it extremely clear in its approach to the patient or the client, it also offers the opportunity for the people supporting them to learn how to use it and understand what it’s actually for.
In terms of professional learning tools, it provides data that can be shared – and be part of their personal development.
In the past we have had lots of pieces of paper but nothing with a joined up approach. An app which enables us to share that data with clinicians, social workers and case managers, really does enable a person-centred approach.
When people go to a clinic appointment, instead of having to remember or turn up with diaries and loads of bits of paper, the clinician sitting opposite them can actually have a record that that person has shared with them for the last six or twelve months.
That’s really important because so many times a vulnerable person or someone with cognitive problems can turn up to a clinic appointment and they might sit and become agitated or frustrated if they were to forget things.
The app could change everything when it comes to patient care. Before they even sit down with a clinician or even if they are not well enough to attend, the clinician would know how a person was feeling and could change or recommend new medication.
If we could do that for people living with long-term health conditions like ME or brain injuries like Parkinson’s, imagine what a wealth of information we can share right across the board.
It puts the patient in control. I am really excited about the possibilities that this could present.
It absolutely puts the patient at the centre, so often the client is never asked for their input to MDT’s, clinical meetings and assessments. Why not? Because they are the people who experience what is happening on a daily basis.
Holistic activation of the senses
Soothing sounds and relaxing vibrations are incorporated into the innovative inmu sound cushion, activating the senses of people with brain injuries.
The human body responds to music. What feels like a healing sound to some can be unbearable noise to others. After suffering brain injuries or a stroke, music and sounds can put tremendous strain on patients. In such cases, even something as subtle as a birdsong can become intolerable.
These findings are the reason that in recent years, music therapy has become increasingly significant in the process of neurological rehabilitation of brain injuries.
Meditational Soundscapes Regulate the Nervous System
The Attruphøj residential facility, located in Denmark, has recently been testing a new and unique therapy tool called inmu.
The facility houses 28 patients with acquired brain injuries and is an institution provided by the municipality; employing 90 professionals from the fields of pedagogy, nursing and occupational therapy.Specialists work on the rehabilitation of the residents with the help of music therapy. Attruphøj applies neuropathic methods within their rehabilitation programme.
“Most of Attruphøj’s residents suffer from an increased sensory arousal level. This means that they have difficulty regulating environmental stimuli. They are exposed to a steady stream of sensations and the nervous system is not able to regulate the reaction,” explains Gitte Hundstrup Nielsen, head of the facility.
Closeness and Communication Without Words
inmu, which is the abbreviation for ‘interactive music’, is a non- invasive tool to help making a patient’s everyday life easier. In developing the inmu, different perspectives were taken into account: those of the users, the nurses and the relatives.
This created a new type of aid that supports holistic, body-related communication and promotes perception, communication and movement skills.
“inmuRELAX promotes tranquility and joy. The music helps the resident to remain balanced, avoiding conflict as a result. This is a dignified method to help people and above
all it is versatile in its application.”
inmuRELAX can be used to lower or increase the sensory arousal level (activation level).
The soft sounds, pleasant vibrations and smooth fabric of the sound cushion have a relaxing and soothing effect on the body.
By moving and touching the sound cushion, the user activates the musical soundscapes, which stimulate the senses.
When asked how inmu improves patients’ everyday lives, Hundstrup Nielsen explains: “We work with systematic risk assessment. This means that we respond on the basis of the signs that the residents exhibit. If a resident raises their voice, screams or tries to threaten someone, it is due to them experiencing discomfort. For example, we have one particular resident for whom our employees ensure to avoid sensory overstimulation.
ut in case of staff being unable to personally tend to the patient we resort to inmu. As soon as they hold inmu, we can observe a state of relaxation and tranquillity.
The level of comfort and well-being, which are achieved through the meditational soundscapes, becomes visible and it also aids many residents in falling asleep.”
Musical Stimulation for a Self-determined Everyday Life
Depending on the severity of brain damage, tremendous restrictions to everyday life can occur. Psychological changes and disorders can have a significant effect on a person’s perception, lead to motor disorders as well as speech impediments.
The person cannot participate in regular everyday life, which affects them and the people around them. The self-image of the affected individual often deviates from reality – a discrepancy that is difficult to accept.
The recovery process is tedious, accompanied by a strong desire for a normal life. Recovery and inner balance can be promoted by music and vibrations: “We receive regular visits from a music therapist who incorporates inmuDANCE into their work, using it as a ball to play catch. While inmuRELAX has soothing and low sounds, inmuDANCE uses cheerful and animating music – the residents automatically dance, move or sing along.
“The results are impressive: inmu elicits an alert gaze, more relaxed facial expressions and improved posture.”
With 25 years of experience in the Danish health sector, Gitte Hundstrup Nielsen has yet to come across anything she can compare to inmu: “I would recommend inmu to all professionals working within rehabilitation. This includes work with elderly people, psychiatric patients, people with physical and mental disabilities and acquired brain injuries.”
Intelligent Interaction of Human and AI
The practical handling of aids plays an important role. The adaptive design of the inmu is decisive, because it takes into account the need for intuitive usability of technical devices as well as the requirement to adapt individually to each situation. The handling is simple and intuitive. Especially weak people or people with a disability benefit from it.
There are no confusing switches, nor is a remote control or app required. Pleasant vibrations – precisely matched to the music – enable even people with severely impaired hearing to use the inmu.
The inmu works with multisensory stimulation. It offers the possibility to regulate the stimulation of the senses as well as the level of arousal – by the user himself. Inside the round, soft sound cushion is an advanced software with artificial intelligence (AI), which reacts actively to touch and movement.
No matter how gentle the interaction is, a meditative world of sound unfolds, which changes and intensifies constantly depending on movement. The award-winning design was developed to be suitable for every hand and body. Small haptic elements invite to be explored.
Helping People Help Themselves
The residents of Attruphøj are adults aged 18 to 85, with different types of and often severe acquired brain injuries.
They all share a common wish and goal that reflects basic human needs: a self-determined life and the recovery of their identity.
inmu treads a new path within the rehabilitation sector. Dependence and the need for constant care decreases and sensory abilities increase without external support.
Mobility is another key factor: inmu is easy to handle, lightweight and hence can be effortlessly incorporated into everyday life; whether for use during the night, in critical situations or while travelling.
Usage During COVID-19
Isolation, restlessness and fear are shaping the current situation more than ever.
The inmuRELAX can help to find moments of peace and relaxation in loneliness. In this particular time, good hygiene is the priority.
The inmu is designed to be touched and in close physical contact with the user, which is why it is also easy to wash and maintain.
The interactive sound cushion inmu is available online: www.inmutouch.com/webshop
For further information contact: email@example.com
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