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.”
QEF’s accessible technology wins international awards
The new Care and Rehabilitation Centre in Surrey, developed by Queen Elizabeth’s Foundation for Disabled People (QEF), has won 2 international CEDIA awards for its innovative use of accessible technology, which was supplied by technology solutions partner Imperium Building Systems Ltd.
These awards recognise the improvement technology can make to the lives of disabled people, which is reflected at a UN event that forms part of this year’s International Day for People with Disabilities. The global UN awareness day today (December 3) highlights the challenges and discrimination disabled people face around the world, and pushes for positive change towards greater inclusion, accessibility and equality for disabled people.
This year on December 3, the UN is co-hosting an event specifically looking at ‘Reducing Inequalities through Technologies’ noting that: ‘persons with physical, sensory, cognitive/learning or invisible disabilities represent nearly 15 per cent of the world population’ 1 and that ‘for some kinds of disabilities, assistive devices/technologies are key “equalizers” that promote inclusion and full participation in all industries and dimensions of life’. 1
The event also highlights that ‘One billion persons with some form of disability can benefit from assistive technologies that can facilitate their social, economic and political engagement, including their participation in decision-making processes that affect their lives and ambitions’ 1
QEF’s Care and Rehabilitation Centre provides neuro rehabilitation for people after an acquired brain injury, stroke, incomplete spinal injury or other neurological condition and clients are supported by expert staff to relearn core skills, so they can rebuild their lives and be as independent as possible.
QEF’s vision for the new Care and Rehabilitation Centre was to use technology to give each person greater control over their personal space, no matter what a person’s impairment may be. It’s easy to take for granted being able to close the blinds when the sun is in your eyes or turn the lights off when you want to go to sleep – until you can’t do it for yourself. QEF wanted a system that empowered clients to have a greater sense of self-determination and influence over everyday activities during their rehabilitation.
Imperium developed the project with QEF, producing a cost-effective ‘smart home’ solution, using easily available technology that is adaptable to each persons’ specific requirements. Five connected smart devices have been installed in each bedroom which can be controlled in different ways; either with standard voice commands, pre-programmed accessible switches or programmable text to talk commands.
Ann, a client at QEF’s Care and Rehabilitation Centre, says: “I wasn’t sure about it at first – it was odd to sit in my room on my own and talk to something, but now I use it all the time. You can have the blinds down, lights on or off or the TV on or off. It’s another step on the journey of independence, so I don’t have to ask someone to do it for me.”
Chris Thorne, director of Imperium, says: “The technology we have installed for QEF will allow service users to have control over the lights in their room, temperature, day light via shading blinds, and audio-visual equipment. So, someone could stay in one position and manage their entire room, either with switches or voice controls. It also needed to be technology that service users could easily access after they left the service; creating independence that could continue beyond QEF’s walls.”
The international CEDIA awards recognise technical excellence and product innovation in the home technology industry. Imperium’s project with QEF was announced in November 2021 as winners in the ‘Multi Dwelling Unit Design’ category and also went on to win the overall award for ‘Life Lived Best at Home’ which reflects the project that gives the best experience for a client.
Judges for the Life Lived Better at Home award said: “This entry is outstanding for its sensitive and pragmatic response to the brief and for the way the technology meets the changing needs of the users. And all this achieved on an extraordinarily tight budget. I hope there will be many more projects like this in the future!”
Karen Deacon, QEF’s chief executive, says: “Our new Care and Rehabilitation Centre gave us an opportunity to use technology in an innovative way that would directly benefit clients as they relearn core skills. Adapting to life after an acquired brain injury is challenging for anyone and if technology can help give someone back their sense of control over everyday activities then we wanted to be able to offer that as part of our neuro rehabilitation programme.”
- Reducing Inequalities Through Technologies: A Perspective on Disability Inclusive Development https://www.un.org/development/desa/disabilities/wp-content/uploads/sites/15/2021/11/IDPD2021ConceptNote.pdf
Webinar to explore the future of brain injury rehab
Join our panel of expert guests as we discuss the challenges and opportunities in improving patients’ lives
The future of brain injury rehabilitation and how patients can be supported in new ways is to be examined by leading experts from across the sector at an event held next week.
Brain injury rehab has made huge strides over the years, innovating and developing to better meet the needs of people living with life-changing injuries.
Through changes in technology, developments in medicine and the advances in neurorehabilitation, brain injury patients should face an outlook which is better than ever before.
However, the lack of resource within health services, exacerbated by the ongoing impact of COVID-19 and mounting pressures on the NHS, mean that progress and change is not being seen at the rate many would hope for.
In 2020, the British Society of Rehabilitation Medicine (BSRM) identified the increased pressure on neurorehabilitation, highlighting the “unquantifiable additional case-load of patients with post-Covid disability presenting with a wide range of problems due to cardio-pulmonary, musculoskeletal, neurological and psychological/ psychiatric complications of the disease.”
In an upcoming webinar – What does the future of brain injury rehabilitation look like? – to be held on Wednesday next week (December 8th) and organised by NRC Medical Experts in association with NR Times, this matter will be examined to assess the scale of the challenge, the opportunities that exist, and what more can be done to better support patients.
The panel will comprise:
- Dr Edmund Bonikowski, founder of NRC Medical Experts, who will chair the event
- John Davis, consulting principal lawyer at Slater + Gordon
- Catrin May, co-founder and director of Breakthrough Case Management.
- Ian Pearce, director of NeuroProactive
The live hour-long event, from 4.30pm to 5.30pm, will include a panel debate, with questions welcomed from the audience.
“Health and social care services have been under increasing pressure from an ageing population for decades and this has now been exacerbated by the disruption created by COVID-19,” says Edmund.
“Brain injury rehabilitation services have always been poorly resourced in the UK, and are now under increased strain while professionals are diverted into the acute management and rehabilitation of COVID-19 patients.
“It is essential therefore that we consider how to improve service delivery models so that people with brain injury do not fall further behind in the queue.
“Technological innovation in its many forms offers much potential here, but realising this will be a substantial undertaking for which we are as yet ill-prepared.
“During this webinar we will explore some of the major opportunities and problems.”
To attend the webinar, registration is required in advance. To sign up, visit here
Thousands supported by communication training
In its first year, the Communication Access project has engaged over 4,500 organisations and individuals
Thousands of organisations and individuals across the UK have benefitted from an initiative to support people with communication difficulties since its launch a year ago.
The Communication Access UK scheme, a free e-learning tool, delivers training on accessible face-to-face, telephone and online conversation and customer service, in support of the millions of people in the UK who live with some form of speech, language or communication disability.
Organisations that complete the training will be able to display the Communication Access Symbol in their workplace, demonstrating their commitment to supporting customers and staff who experience difficulties in communication.
More than 4,500 businesses, organisations and individuals have already taken part in the initiative, which launched last November and was developed by the Royal College of Speech and Language Therapists (RCSLT), in partnership with the Stroke Association, Headway, MND Association, Business Disability Forum, Communication Matters, The Makaton Charity, and the National Network of Parent Carer Forums.
And on the first anniversary of its launch, two organisations have achieved landmark ‘firsts’ in support of Communication Access.
Barnsley FC has become the first football club in the UK to undertake Communication Access training and commit to supporting people with speech, language and communication barrier. Its charity arm, Reds in the Community, has also signed up to the initiative.
Northern Devon Healthcare NHS Trust (NDHT) has also become the first NHS Trust in England to gain accreditation to the standard, offering the package to its entire workforce.
The success of the scheme to date comes as the campaign to secure better access to speech and language therapy continues, with thousands supporting a petition to the Government and 20 APPGs calling on Prime Minister Boris Johnson for action.
“Communication disability in the UK affects millions of people, so I’ve been thrilled to see so many organisations and individuals register for the free multi-award winning Communication Access training in the last year,” says Royal College of Speech and Language Therapists’ chief executive, Kamini Gadhok.
“Barnsley Football Club has just become the first football club to be CAUK accredited, while North Devon Healthcare NHS Trust is the first NHS Trust to commit to training its entire workforce to enable them to provide communication accessible services and it’s been fabulous to see organisations setting the bar for others in this way.
“Of course, we’d like to see many more businesses and people register for the training, so please visit the website and register for the training today.”
Barnsley FC’s CEO, Khaled El-Ahmad, said: “Our club has a number of touchpoints, both of digital and physical nature, and it is integral that we provide the best service possible to supporters.
“Knowing that we are making strides to communicate in an inclusive manner is positive, as we look to improve our offering and overall experience for individuals living with disabilities at Oakwell.”
Andrea Bell, deputy chief nurse at NDHT, added: “At NDHT, we encounter a huge variety of patients with extra communication needs, from those who may have had a stroke to people with visual or hearing impairments. It’s vital that we are able to communicate with them to give them the best possible care.
“We’re extremely proud to be the first Trust in England to become part of Communication Access, and we hope other Trusts will follow our lead in facilitating the best possible communication with patients.”
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