Lorraine Currie has watched her daughter recover from a serious brain injury and go on to exceed her expectations. She tells NR Times what it’s been like to see her daughter’s slow recovery.
When she was just 17 years old, Grace was hit by a car as she crossed a small village road after finishing college.
She suffered a severe head injury and was resuscitated twice at scene. After being taken to Shrewsbury hospital, her only hope was to be transferred to Stoke hospital, which is a regional trauma centre, who accepted Grace even though it didn’t have a bed.
She went into intensive care for six weeks, from September 2010 to November, then she was stepped down to special care until December. Grace’s parents, who are both social workers, drove the two-hour round trip to see their daughter every day. Then, Grace was moved to a local rehab hospital, where she stayed for 12 months.
“My experience when she was in hospital was a feeling of being disempowered – when they’re in that intensive nursing situation there’s very little you can do,” says Grace’s mum, Lorraine.
Despite feeling powerless, her parents quickly devised plans to help support her cognition, thinking and planning.
“We set out to do whatever we could do in the beginning, when we were in intensive care and the rehab hospital,” Lorraine says. “Massaging her hands and feet, making up games, throwing balls to get her to use both hands, bringing in bubbles, helium balloons – that’s how we saw she followed things with her eyes – building bricks, matching colours and doing jigsaws.”
When Grace was discharged, she had to be fully holstered in a hospital bed in the dining room. She wasn’t mobile or continent, and progress was slow. She had physiotherapy for two years, but apart from that, Grace had a huge drop-off in care when she got home from hospital.
“When Grace was discharged from hospital, she didn’t have any consultant follow-up or rehab follow-up,” says Lorraine.
“She was on various NHS waiting lists, but the process was so slow. We didn’t want to do her personal care – we were her mum and dad, and that wasn’t the right relationship for us,” Lorraine says.
A family friend who worked as a carer in a brain injury unit sold her house and moved in with the family, becoming Grace’s full-time personal care assistant. Eventually, Grace went back into her old bedroom, and after two years, her full-time assistant moved out and rented locally, as she wasn’t needed as intensively anymore.
Grace lost her ability to read after the accident, and couldn’t recognise letters, despite being quite academic before.
“We had to develop things ourselves, like make memory cards and recipe cards and weekly planners; all visual because she has a poor memory and can’t use written aids.”
Lorraine says there’s a lot that families in the same situation can do to add to the work of professionals.
“You can do some very straightforward things. I encourage anyone in this position to not leave it all to professionals because every minute you’re spending with that person you’re improving their cognitional and wellbeing,” Lorraine says.
For example, Lorraine took a piece of laminated paper and wrote ‘shower’ on one side and ‘bath’ on the other, which can be turned around every day.
“We’re battling on a number of fronts, including poor memory, and her thinking, problem-solving and executive skills are slower than they were. But Grace is getting better at using Alexa, which has been a life-saver,” Lorraine says.
And then, two years ago, at the age of 25, Grace moved into her own home five miles away in the village next to her parents, with four staff personal care assistants. Lorraine made her daughter aids to help her live independently, including a ‘what if’ picture book, demonstrating what to do in minor household emergencies, such as spilled water on the floor.
“It was incredibly hard because everything worked well here and she was happy here. If anything, we had to force the issue and encourage her,” Lorraine says.
“We’re getting older and we want Grace to have the resilience to live life. She was an independent young woman so it felt like the right thing to do. Now it’s paying dividends; she can play her music loud all the time and she likes being in her own place.”
Grace has since gone on to do what her parents could never have imagined.
Before her brain injury, Grace was planning to go to university to study psychology.
“After her accident, that wasn’t possible, and it took her a while to come to terms with that,” Lorraine says. “So she looked at what she could do that didn’t involve reading.”
Grace had been supported by the local learning disability college, who came to the house to do basic literacy and numeracy with Grace. Then, she developed an interest in art.
“After a while, Grace got bored with that, because she didn’t see anyone else, so she went to college, then she felt like she reached the limit there, so we pushed her to go to ordinary college to do photography.”
Grace was then accepted into Chester University and transferred onto its fine art course. She did her third year spread over three years, and just recently graduated with a first-class degree.
“It’s incredible for someone who has to record things,” Lorraine says.
However, it took three years to get Grace’s support staff to understand that the notes they took for her in lectures were pointless, Lorraine says. She argues that there’s a need for support staff to think outside the box to cater to people’s needs.
Lorraine says not only should more people with brain injuries be encouraged to go on to higher education, but they should also receive support from staff who are trained specifically in brain injury.
“Why shouldn’t you get to carry on education? Grace had support staff funding by her disabled student allowance, but none of them had experience in brain injury,” she says.
“There’s a huge gap in this country around brain injury and academic aspiration. I’d like people to take heart from what Grace has done, she’s profoundly disabled, but we don’t work with her disabilities, we work with her abilities.
“Never in a million years could we have seen this when the accident happened. She’s worked ten times harder than anyone else to get there.”
Grace is now building her own website and hoping to submit her artwork to some galleries and build her success as an artist.
“Grace has a lot to say visually that she can’t say verbally,” Lorraine says.
Her work is unique to Grace, Lorraine says, because she lost her lower visual field.
“If she paints a huge person, their legs peter out because she doesn’t see that bit,” she says.
Grace’s art helps her get through difficult days, Lorraine says.
“If she’s feeling angry or she’s not having a good day, she loves throwing paint. She’s got shoes covered in paint splats – we converted the double garage into a studio, now it looks like someone’s gone in there and thrown paint everywhere.
Inspiring a brighter future for residents
A neuro-rehab provider which opened its first facility in Worcester shortly before the first lockdown has succeeded against the odds – and now has plans to expand in 2021, as NR Times reports.
Inspire Neurocare provides support for people with a variety of neurological conditions, offering rehabilitation, respite and palliative care.
The firm opened its first specialist care centre in Worcester in February 2020, and this will be followed by further facilities in Basingstoke and Southampton in 2021/22. Inspire prides itself on a novel model of care that has “no limitations on the possibility of recovery,” all led by director of clinical excellence Michelle Kudhail.
A key element of the centre’s approach is the team’s commitment to understanding that every patient, and the circumstances that led them there, is different.
Whether this means enabling people to leave high dependency hospital units and develop their independence in a modern, home-from-home environment, or providing long-term support or end-of-life care, the service is designed to work around the needs of each patient.
Michelle’s background means she is the ideal person to head up the Inspire team, having worked as a neuro physiotherapist in the NHS until 2010, before moving into the private sector.
She takes an holistic approach to patient care, which has led to the creation of a team of life skills
facilitators and therapists at the provider, who develop their care around the needs of everyone.
“The life skills facilitators support and assist the residents to do as much as they can for themselves,” she explains.
“As the name suggests, their role is more than a carer; it is to facilitate the residents in all aspects of their care, whether that’s helping them get their breakfast, choosing what they are going to wear, or taking their medication.
“Their skills are broad because we want them to be involved in all aspects of the residents’ care; and because we want to provide what they need at the time that they need it.
“Roles such as this also enable us to evaluate the outcome of any action. If a resident has been given pain medication, a facilitator can assess whether it’s been effective, rather than a nurse giving the medication and then not seeing them until the next round.
“We also know from a therapy perspective that some patients don’t respond well to having therapy at a fixed time on a particular day; they simply might not feel like doing it. Our facilitators mean we can best provide interventions for the resident when they want them.”
Alongside this role, the facility also employs a wellbeing and lifestyle coach, focussing on the health and emotional needs of both residents and their relatives, particularly during a time when COVID has caused a lot of uncertainty.
Michelle says: “We wanted somebody that had relevant experience in working with residents, particularly with neurological conditions but also with a well-rounded experience so that they would not just focus on one aspect.
“The idea is to have somebody who can offer support in all areas, whether it be psychological, emotional or physical.”
Staff are overseen by experienced rehabilitation consultant Dr Damon Hoad, who shares his clinical oversight with the interdisciplinary team and supports patients on their journeys.
The rest of the clinical team have a wealth of experience within neuro services in and around the region.
The design of the Worcester facility draws on Michelle’s years of experience, and she had the opportunity to use her skills to help develop the purpose-built home.
She says: “We’ve had a lot of involvement all the way through from knocking down the pub that was there, to seeing it grow. Having the opportunity to be involved from the ground up was fantastic.
“Within the build itself we try to consider the needs of younger people, and so the inside of the home is very much a contemporary design and a lot of research has gone into its development to ensure it has the correct, up to date, equipment.”
Adding to the sense of autonomy staff are keen to foster, is the independent living flat, which staff are able to support via environmental controls.
With soundproofed rooms, residents can enjoy listening to music or watching films without disturbing others.
In common with all care facilities, the impact of COVID means that a lot of thought has had to go into the long-term plans for the property. The recently-built visitation suite – known as the ‘family and friends lounge’ – allows visitors to meet their loved ones in a safe and COVID-compliant way.
The suite includes separate access for visitors from outside, and features a large transparent Perspex screen separating each side of the suite, while an intercom enables contact-free communication.
As well as creating an infection barrier, the screen also assists when it comes to residents who may struggle to understand that they are unable to hug their relatives, while still allowing them to communicate and see each other up close.
After each visit, the room is cleaned and decontaminated in preparation for the next visit.
As Michelle explains, human contact is essential for emotional wellbeing, adding: “We’ve tried to create an environment that is as safe as possible, because we know how important visits are to the residents but, more particularly, to their relatives.
“Supporting the residents through this time is vital. We have residents that are used to going out and doing things in the community and we have had to adjust by being creative in the ways in which they can still access things that they enjoy and still communicate with their families.”
And while the pandemic has certainly delivered some challenges, Michelle and the Inspire team have been able to look at some positive outcomes.
She explains: “One of the positives for us is that it gave the team and the residents the opportunity to really get to know each other.
“We could also develop the life skills facilitator role to its truest form, because everybody was very much working together dealing with the crisis, supporting each other and supporting the residents.
“It was a testing time but it actually it brought the team together, bearing in mind the facility opened literally as everything was going into lockdown.”
The creation of the COVID-secure visitation suite is just one example of the creativity with which all at Inspire approach care, Michelle says.
By looking to build collaborations with other organisations, Michelle also hopes to share her hard-won knowledge, potentially becoming involved in research and training in the future.
Despite the upheaval of its first few months, the Inspire team has already achieved some successful patient outcomes.
One such success story is the case of Adrian, who came to the centre for specialist neuro-rehab following a car accident in which he suffered a severe brain injury. In the months that followed, Adrian’s journey enabled him to walk out of the service and return home to his wife and children.
(See Adrian’s story below – and read more here).
While the coming months may bring more challenges, as COVID lingers and vaccinations are rolled out, the Inspire team seemingly has the skills, approach and dedication to rise to whatever the future holds.
‘My brain trauma caused my head to turn 180 degrees’
Sarah Coughlin experienced the horror of her head facing backwards after sustaining a brain injury. Here she shares her recovery journey with NR Times.
“I was wondering why my windscreen had black lines across it – until I realised I was looking out of my back window.”
Sarah Coughlin recalls the horrific moment she realised her head had turned 180 degrees to face backwards, due to brain trauma she had suffered after sustaining a head injury.
In the immediate aftermath of the injury, Sarah recalls little seemed wrong aside from a persistent headache.
But five days later, when she woke up late and rushed out to her car, the extent of what had happened became all too clear.
“I could feel this searing pain through my shoulders and my back,” says Sarah, as she realised her head had turned around to look out of her rear windscreen.
“It was quite difficult to turn my head back around and keep there but after a while I managed it, though the pain did not go away.
“I thought I had just slept funny and once I had properly woken up the sore neck would probably calm down. But when I got to work I still felt awful.”
This began the long process of diagnosis, which took years to achieve.
“I went to A&E every week for three months because the pain wouldn’t go away and I was still getting neck spasms,” she remembers.
“I was told it could have been a slipped disc, a muscle injury or having slept awkwardly. It changed each time.
“I was in agony constantly, but I still wasn’t diagnosed for at least another two years.”
At first only Sarah’s neck and walking were affected, but over the course of a year she developed spasms, optical neuralgia, pressure on the occipital nerve which runs through the neck up into the scalp, causing tremors, fits, paralysis and fatigue.
Eventually, she was diagnosed with dystonia – a condition which causes involuntary muscle spasms and was the cause of her head rotating.
Doctors also told her she had a Functional Neurological Disorder (FND), a variety of medically unexplained neurological symptoms which appear to be caused by problems in the nervous system.
After her injury in 2014 and its consequences, Sarah could no longer drive, do her job as a teaching assistant – a role she loved – or take part in the same social activities as before.
She also lost touch with many of her friends and hardly left the house as she was scared of people staring at her and judging her for the way she walked and moved.
The 37-year-old, from Fazakerley, Liverpool, says: “I used to be quite fiercely independent – so to go from doing so much to not being able to do anything was the hardest transition.
“I felt a real sense of loss for the life I had when I was first diagnosed.”
In 2017, Sarah discovered The Brain Charity, a national charity based in Liverpool which provides practical help, counselling and social activities for people with all forms of neurological condition.
She made new friends by joining the charity’s craft club and received help getting carers allowance for her partner John and with finding a new home as she could not use stairs safely anymore.
One night in Autumn 2019, John woke up to find she had turned blue and stopped breathing as a spasm had caused Sarah’s neck to contort, closing her throat and airways.
The only solution was a specialist bed which cost £10,000, which was achieved through fundraising and grant funding. She managed to raise the money last year, and now has a bed which uses deep massage cyclo-therapy to improve circulation and reduce her symptoms.
Sarah is now a passionate supporter of The Brain Injury Charity for the assistance it has given, and is keen to encourage people to donate. The charity’s resources are currently under unprecedented pressure as a result of the COVID-19 pandemic, with a 70 per cent increase in referrals met with a huge decrease in fundraising.
“There’s lots of things I can’t do anymore but The Brain Charity has freed me from staring at four walls,” says Sarah.
“They helped me achieve goals that without them I wouldn’t have been able to do.
“It seems obvious, but the more money people donate, the more people the charity can give the vital support I found so important.
“I want other people to have that place that is safe and secure, in an environment with people who have had similar experiences.
“The Brain Charity has given me such incredible support and I’m so grateful for it.”
‘I’d never imagined using Zoom as part of my physio placement’
Every aspect of neurophysiotherapy has had to adapt with the onset of COVID-19, including how students prepare for a career in the profession. Here, student Tabitha Pridham discusses her experience of a pandemic placement.
Prior to the COVID-19 pandemic, the concept of physiotherapists routinely holding sessions with clients remotely was quite unlikely.
While used to some degree in a small number of practices nationally, telerehab, as it has now become widely known, was not on the agenda of many.
But due to its seismic rise during the past few months, with physios realising the potential of digital and virtual means to see clients when meeting in person isn’t possible, it seems telerehab is here to stay.
While it was never part of the studies of aspiring physiotherapists, they are now having to adapt to something that will most likely be part of their future careers.
“The very nature of physiotherapy is that it is hands on, so it seemed really strange to me at first that we would be using Zoom to do online physiotherapy,” says Tabitha Pridham, a third year student at Keele University.
“But I have seen how useful it can be, particularly for those patients who are very advanced in their recovery and maybe can take part in a few classes a week remotely. I think it can be valuable in addition to face to face treatment.
“I do believe it will carry on into the future, particularly in private practice, so have accepted that telerehab will be something I will be using in the longer term.”
For Tabitha, currently on a placement with neurological physio specialist PhysioFunction, telerehab is not the only big change from her expectations pre-pandemic.
“The use of PPE is something I have had to adapt to,” she admits.
“Every time you see a patient in person, you have to change gloves and thoroughly wash down equipment, to be compliant with the very high hygiene standards.
“This can be time consuming, and when you have back to back appointments I’ve found it can be quite stressful to ensure you’re doing everything you need to do in addition to your work with patients, but that’s something I’m learning as I go.
“Wearing a mask and visor isn’t always ideal for communication, but that’s something else I am finding gets better with time and use. Although it can be quite a juggle when you’re trying to treat a patient with one hand, and trying to stop your visor falling off with the other!”
Tabitha is based in the clinic four days a week, but has to work from home one day a week due to the need for a regular COVID-19 test, to ensure the safety of clients and colleagues alike.
“I have my COVID test every Monday, so I carry out consultations by Zoom that day, and providing my test comes back negative, I see patients in person Tuesday to Friday,” she says.
“I find the mix of telerehab and practical experience is really useful, especially as we are going to be using Zoom and the likes in the long term.”
Having had a previous placement cut short in April due to the pandemic, Tabitha is grateful she is able to get such experience, which accounts for vital clinical hours training for her degree course.
“Some of my year group were taken off their placements and have had to do everything virtually, so I’m lucky that I have been able to continue in a clinic,” she says.
“I’m still getting the same training, as aside from the PPE and new rules around social distancing, clients get the treatment they always have done so the practical work is the same.”
Tabitha is set to graduate in summer 2021 and has the experience of her studies, supported by three years of placements, to help her build a career in physiotherapy.
“In some ways this has been a really weird time to be working in physio, but in others it has been a very good time. This kind of experience prepares you for anything and everything, and the use of telerehab has shown me what it will be like in the future,” she adds.
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