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Leading the remote resistance

Andrew Mernin reports on an emerging technology aiming to revolutionise how rehab professionals work together on patient goals.

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COVID-19 could spark a cultural renaissance, according to some in the art world.

Artists thrive on isolation, BBC arts chief Jonty Claypole points out, and therefore an explosion of new work could emerge from current conditions.

The spirit of renaissance – meaning ‘rebirth’ in French – might also course through our workplaces.

Kitchen tables, spare bedrooms and garden sheds are among the many residential quarters to have been commandeered by home workers recently.

And while it hasn’t been easy for many to adjust, the change has exposed some of the inefficiencies and excesses of traditional ways of working.

In the neuro-rehab field this could lead to an irreversible shift in how things are done, says Dr Penny Trayner, a paediatric clinical neuropsychologist. “COVID-19 could change the way we work forever.

We are already seeing organisations doing a ‘factory reset’ on how they do things, founded on using new skills and technology.

“It’s pretty difficult to justify not doing things in the most efficient way possible. Once the restrictions from the pandemic are lifted, we will no doubt find that going back to the old ways of working is much less efficient than the video conferencing, apps and technology that we have been using in the meantime.”

Penny and her colleagues at Clinical Neuropsychology Services have long been working remotely to deliver assessments and interventions for young people across the UK.

But they also have a stake in the ensuing race towards new ways of working.

For they are the pioneers behind Goal Manager, a cloud-based software platform for rehabilitation goal setting for multidisciplinary teams (MDTs) in remote locations.

It acts as a data manager and enables MDT assessment, goal planning, review, communication and evaluation, with all necessary gold-standard processes supported, and all accessible remotely from anywhere.

“Goal Manager was developed directly from clinical practice experiences, ‘by clinicians for clinicians’, and so it has an evidence base behind all of the components built into the software, which cover all of the key practices in team goal setting.

“The idea developed from my experiences of working remotely while running a community-based neuropsychology service for the past 11 years. This style of working is something we’re very familiar with and, in fact, in neurorehabilitation generally, many are used to working in this manner due to the scarcity of services in the UK.”

Although borne out of brain injury services, the platform incorporates the World Health Organisation’s International classification of functioning (ICF) – a global framework that addresses any physical condition.

It can therefore be used in any health service context where goal-setting is relevant, for example in stroke, spinal injury and cardiac services.

Penny says: “Remote working is a wave that’s been coming towards all healthcare services for a long time, but there have been barriers to people implementing it, in terms of time and infrastructure amongst other things.

“Those barriers are now being overcome, because everyone is invested in finding ways to work together remotely. We’ve already addressed a lot of these barriers in creating Goal Manager and it’s ready to go for any rehab teams that need it.”

Penny’s day job, delivering neuropsychology services to children and young people in the community nationwide, requires being plugged into MDTs all over the country.

Goal Manager emerged from this necessity.

“Most neuro-rehab services in the community involve people working remotely. This is generally the lay of the land for independent services across the UK.

“The software was developed from within our service to ensure that we could consistently provide best practice, as well as reduce time and costs associated with goal setting, by automating the processes involved.

“As more of my colleagues took an interest and want to use it for their own services, it took on a life of its own and we launched it for commercial use in 2019.”

In designing the app, Penny recognised that goal setting was a vital, but often extremely time-consuming, element of rehab.

For example, tracking the activity of teams, they found that one service user, over six months, required an MDT of four people a total of 70.5 hours to complete goal setting activities.

This excluded the time taken to share progress between meetings, and time taken to travel to different locations to meet.

“Spending these hours on goal setting takes away valuable time that could be better spent on clinical work,” Penny says.

Goal setting is crucial in acquired brain injury (ABI) rehabilitation for collaboration within MDTs, motivating service users and tracking progress.

But, despite the extensive evidence base, effective goal setting across services is still inconsistent.

Goal Manager team members Dr Penny Trayner (left) and Merryn Dowson.

Goal Manager aims to address this challenge. It compiles relevant data from assessments which then form the foundations for goals.

Goals are then set using of Goal Attainment Scaling (GAS), a tool which is widely used in rehabilitation, but can be complicated to use in practice.

SMART objectives towards completing each goal can then be set, so that the contribution of each member of the team toward meeting these goals is clearly laid out.

The platform was initially tested in an independent practice focused on brain injury in young people. It led to a 43 per cent reduction in time spent on goal setting.

These findings were shared at the conference for the neuro- rehab special interest group at a World Federation for Neurorehabilitation event last year, catalysing demand for the system in large in and outpatient services.

In the UK, Goal Manager also has potential to support the aims of the Rehabilitation Prescription, which sets out the services that an individual should be receiving following a brain injury.

This was acknowledged by the UK Acquired Brain Injury Forum (UKABIF) at the end of last year, when Goal Manager was awarded their inaugural Mike Barnes Award for Innovation.

Penny says: “Cutting time spent on goal setting reduces costs and gives more time to spend on actually achieving the goals.

“Currently, services record their goals in different formats using different documents, maybe on spreadsheets, or maybe on paper, and shared over email, or at physical meetings.

“There is no consistency and it can be challenging for clinicians to pull all of this together and make sense of the data, as well as service users.

“We’ve put everything onto one platform, streamlining the processes involved and enabling progress and output reports to be produced that consolidate all the goal setting data on one document.

“Up until recent weeks, a lot of teams have been dependent on having physical meetings to discuss and coordinate their activity.

“Goal Manager provides the infrastructure to support a virtual version of what they’ve already been doing. All of its components are tools that clinicians are familiar with and using – and which are linked to best patient outcomes.

“But we’re also aware that time and other pressures can limit professionals’ capabilities in making best use of these tools.

“So we’ve simplified activities, providing a one- stop-shop for best practice in goal management that allows teams to get on with what they’re doing without having to worry about administrative demands.”

Beyond the UK, the platform is being rolled out in the US as part of community rehab services and professional training for physiotherapy students.

Impending developments include a patient-portal, which will support service users in taking ownership of their goals.

“Patients can already log into Goal Manager, but we want to create a more bespoke portal for them, to make their goals more meaningful and accessible and to give them more input into the narrative of their goals.

“Just the other day I had a 11-year-old patient, who accesses their data through the existing platform, telling his team ‘it’s my life and it is important to me that I can use the app and see my own data’. And he’s absolutely right.”

A research dashboard that enables researchers to easily analyse the vast bank of anonymous data generated by its users is also in development.

By making the platform free to use for educators and researchers, it is hoped that it proves an impetus for a much-needed surge in research into outcomes in complex neurological conditions.

Meanwhile, Penny and her team aim to provide technological guidance to rehab professionals struggling to adapt to the remote working renaissance.

“Many healthcare professionals, and people in general, perhaps don’t feel confident using technology and have just not had to use it that much in their work in the past.

“We are running a series of webinars and training events about goal setting and making the best use of technology in rehab.

“The current changes we’re all going through are something we are well prepared for; we’ve got all the infrastructure in place to support teams to carry on doing their work. So we want people to know that we’re here to help.”

For more on Goal Manager visit www.goalmanager.co.uk

 

References:

Gauggel, S & Hoop, M. (2004). Goal-setting as a motivational technique for neurorehabilitation. Handbook of Motivational Counselling, 439.

Plant, S. E., Tyson, S. F., Kirk, S., & Parsons, J. (2016). What are the barriers and facilitators to goalsetting during rehabilitation for stroke and other acquired brain injuries? A systematic review and meta-synthesis. Clinical rehabilitation, 30(9), 921-930.

Tucker, P. (2015). Goal setting and goal attainment scaling in child neuropsychological rehabilitation. In Reed, J., Byard, K., & Fine, H. (Eds.), Neuropsychological rehabilitation of childhood brain injury (pp. 151–170). London: Palgrave Macmillan.

 

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“I wouldn’t wish it on anyone, but I’m glad my brain tumour happened in a way”

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Helen and Megan have both experienced cancer in different forms

After Helen Bulbeck’s daughter Megan was diagnosed with a brain tumour, the whole family was left isolated with little to no support. Now she is using this experience, plus her own journey with cancer, to help run the UK’s leading brain tumour support charity Brainstrust.

“It was at the time when Rohypnol was doing the rounds in the local pub, so I just thought maybe her drink had been spiked.”

This was Helen Bulbeck’s initial reaction to her daughter, Megan, collapsing after a night out and being omitted to A&E in 2006.

She later realised that it was the start of a lengthy battle, as MRI scans revealed Megan had a brain tumour.

To complicate matters, surgeons opted not to operate unless the tumour showed signs of developing.

And so began Megan’s monthly brain scans, all while she was completing a History of Art degree.

“University was where Megan’s priorities were,” Helen tells NR Times. “The main focus at that point was to get her epileptic episodes under control.

“We weren’t referred to a neurosurgeon until the following January – that’s six months after her first episode.

“We were completely out of our depth; we had no idea what was going on. We had been told in October that she had a brain tumour, but that was it.”

It was the lack of available support that really concerned and surprised Helen.

“There was nothing,” she says, when asked about the help they received after Megan’s diagnosis. “We were just left in a vacuum.

“That’s what I couldn’t understand, because if you’re diagnosed with breast cancer, you’re assigned a clinical nurse specialist. We didn’t have that.

“I spent a long time on the internet trying to find where the support and information was and I desperately needed to talk to somebody about the impact that this diagnosis had, but there was nobody.”

Helen was left on her own in search of a solution for Megan, spending countless hours learning more about brain tumours and possible treatments.

This led her to discover neurosurgeon Peter Black from Boston, who agreed to operate on the tumour after a consultation.

The severity of brain tumours is graded from one to four. Black was the first surgeon to tell Megan she had a grade two tumour, but it could transform into a higher grade within five years, with the consequences being potentially fatal.

With that in mind Megan decided she would have the tumour removed. Because of the risks involved with the surgery, however, the procedure was delayed until after she had finished her studies.

Through all this Helen was fighting her own battle after being told she had head and neck cancer.

She quickly underwent radiotherapy and surgery, knowing she needed to stay strong for her daughter.

“I was just focused on getting fit so that I could go with Meg to America for the surgery.”

Helen was able to make a full recovery, but then faced the challenge of funding Megan’s £30,000 surgery.

Megan’s group of friends were desperate to help and agreed to do some fundraising, eventually smashing their target and generating £70,000.

After this, things finally started to run smoothly. Megan was able to finish her degree and successfully underwent surgery in 2007 which saw her tumour removed.

“We had such a good story and we’d learned so much,” Helen says. “We thought we’ve got one of two options; we can either go back to our lives as they were and donate what we’ve got left to another charity. Or we can use those funds to set up a charity which was going to close the gap in the marketplace.

“Who do you turn to the day you’re told you have a brain tumour? There’s nobody out there and we didn’t want people to feel as lost as we did.”

From this Brainstrust was born.

Starting off simply as a helpline, the charity has evolved into a support trust with UK-wide reach, developing communities to reduce isolation, build resilience and enable people to live the life they want.

It focuses on providing evidence based information around brain tumours and its support specialists can point people to the correct resources, without forcing anything upon them.

“The only other charities that existed at that time were all to do with lab-based research, there was no charity out there where you could pick up the phone and ask for help.

“Because we have that experience, we knew what the information was that people would want to hear.

“Meg and I knew what it meant to be both a patient and a caregiver, so we used that 360 degree perspective to support others.”

Since then Brainstrust has gone on to support thousands of patients and their families.

The vast majority (93 per cent) of those that contacted the charity reported a positive outcome, with nearly 1,000 new patients engaging with it in 2019.

Since its founding in 2006, care around brain tumours has drastically improved.

It is the most common form of cancer that affects those under 40 and it is one that is rising at the fastest rate in over 65s.

Discussing how attitudes to brain tumours have changed, Helen says that new technologies can lead the way to better outcomes.

“Your first line treatment with a brain tumour should always be, where possible, neurosurgery. That was what saved our daughter’s life.

“I think the technology is absolutely key and probably until the last five years, that’s been hugely ignored, but it is catching up.

“In terms of the actual therapies, I think with radiotherapy we’ve made huge advances.”

Despite this progress, Helen says there are still huge differences between the treatment of brain tumour patients and those with other cancers and conditions.

She draws on the example of post-stroke rehab and the general care stroke survivors receive.

“Stroke patients get a wonderful wraparound reablement service and I’d love to see brain cancer having a parity.

“I find that some of the attitudes are a bit nihilistic, as in if you’re diagnosed with a glioblastoma people tend to see this as life limiting with a poor prognosis so it’s not worth investing in. I think it absolutely is.

“That’s the one thing I would love to be able to transform, the day somebody has a brain tumour,
they immediately get that same wraparound care.”

Megan is currently living a happy and healthy life since her surgery, being able to get married and gifting Helen with two granddaughters.

She still undergoes regular brain scans and, after becoming a qualified coach with Brainstrust, she is now training to become a psychodynamic psychotherapist (a discipline involving the interpretation of mental and emotional processes rather than focusing on behaviour).

Reflecting on her journey Helen describes her pride in the work they had done so far, but admits there is still much work to be done.

“It’s been a highly emotional rollercoaster at times, we get very tired but it’s not a job it’s a vocation.

“It’s important not to forget that before we’re patients, we’re people and I think the more we can get clinicians to recognise that sitting in front of them is a person not a patient, then that person is going to be much more resilient.

“Just hearing the testimonials of the impact that our work has had is what keeps us going.

“I will always remember Meg saying to me ‘I would never wish a brain tumour on anybody, but in a way I’m glad this has happened because of what we’ve achieved.’”

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Loneliness in lockdown – how have survivors been impacted?

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Loneliness in lockdown among brain injury survivors is the subject of a new research study which hopes to shine a light on the ongoing issue of isolation. 

While loneliness for the wider population was something rarely previously experienced prior to the COVID-19 pandemic, for those living with a brain injury, the everyday reality is often very different. 

And through this new study, researchers hope to discover the true effect the pandemic and its necessity for survivors to stay at home – and in some instances shield for several months – has had and how their protective factors have impacted on that. 

The project, by the University of Sunderland in conjunction with Headway, is currently gathering participants for its pioneering research, which will compare the experiences of people living with brain injury to those without. 

Led by Dr Stephen Dunne, who has a long-standing research interest in social factors which affect brain injury and stroke survivors, he hopes it will both raise awareness of the ongoing issue of loneliness many people face, as well as helping to inspire action.  

“There is a dual focus to this project – loneliness is something known to the masses now more than ever before; it’s not just something felt by a particular part of the population. For a neurotypical individual, I think it has shown what life can be like to be lonely in ways they may never have known previously. 

“An important point of our research is to try and understand how, for people with brain injury, their loneliness and their perceptions of loneliness have been affected during the pandemic – has this been heightened over the past year and been exacerbated by lockdown? 

“Or have they actually felt less lonely than neurotypical individuals, as they have had the experience pre-pandemic of adapting to life like this, and already have the support strategies in place?

“But crucially, the future of this project isn’t to define loneliness, understand its impact, then drop it – we want to understand it so that we can facilitate the removal of barriers so we can bring about strategic improvements to the wellbeing of people living with brain injury.” 

Dr Dunne and his team are seeking brain injury survivors nationally to take part in the research, which will be done by a survey: https://sunduni.eu.qualtrics.com/jfe/form/SV_czH5B8R5kieDgQR and an optional additional interview with the team remotely via Microsoft Teams. 

“We’re at a crucial stage now where we appear to be coming out of restrictions, but the experiences of the past year are still very real for so many people,” adds Dr Dunne. 

“We want to do this at the right time, before reintegration into society starts to happen and we are looking retrospectively, so we’re keen to hear the experiences of as many people as possible.

“We want to better understand loneliness and its impact, so we can help to bring about change for the future. Understanding the journey of brain injury survivors over the past year is a key part of us being able to do that.” 

For further information about the research study, or to share experiences through an interview with the research team, contact Stephen.Dunne@sunderland.ac.uk

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Temporary concussion substitutes ‘must be introduced by June 1’

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Temporary concussion substitutes must be included in the current trials underway in the Premier League to safeguard the safety of players, players’ unions said today. 

FIFPRO and the PFA have called for the introduction of temporary substitutes no later than June 1, and for the scope of the 18-month trial – which enables a team to replace a player who has sustained concussion, but on a permanent basis – be extended to include parallel trials for temporary substitutions. 

In an open letter to IFAB, football’s lawmakers, FIFPRO – which represents over 65,000 professional footballers worldwide – and the PFA highlighted the cases of West Ham United’s Issa Diop and Sheffield United’s George Baldock in making their case. 

“Player safety and welfare is paramount, and should be the only priority,” they say in their letter. 

While both bodies were supportive of the permanent concussion trials when introduced, such incidents – added to the new FIFPRO poll, which shows 83 per cent of 96 professional football club doctors at top-flight European club believe temporary substitutes should form part of future protocol – have shown that action needs to be taken. 

“In England, since the trial began, we are aware of two incidents where a temporary substitution option would have better protected players,” states the letter. 

“In each case, the players suffered from a head injury but, following an initial on-field assessment, continued to play. They were subsequently removed when it emerged their head injury was worse than first thought.

“These cases underline our concern that permanent substitutions do not give medical teams the appropriate environment to assess a player with a potentially serious head injury.

“The reality of the in-game situation is loaded with pressure. Medical teams can be presented with a situation where a globally broadcast match is on hold, awaiting their assessment. They have to make a potentially game-altering decision in a multi-billion-pound industry.

“We have no doubt medical teams act in the sole interests of the players. However, the rules do not do enough to support medical personnel. Pressure on them will be amplified with the return of crowds.”

The letter states that the inclusion of temporary concussion substitutions, which they propose should be tested in parallel with the current trial, will:

  • Provide medical teams with additional assessment time
  • Allow for the assessment to take place in an appropriate environment
  • Permit a match to restart with neither side numerically disadvantaged
  • Reduce pressure on players and medical staff to make quick decisions.

“In December 2020, we welcomed the decision by IFAB to invite competitions to trial permanent concussion substitutions,” FIFPRO and the PFA state.

“At the same time, we have remained in favour of testing temporary concussion substitutions. This has been our position for many years.

“Since the beginning of IFAB’s permanent concussion substitute trial, we have seen several incidents where the new laws of the game have fallen short of their objective and jeopardised player health and safety.”

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