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Brain injured by a single bite

A holiday meal in Budapest left 26-year-old Amy May Shead fighting for her life and severely brain injured.

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Julie Martin has just emerged from an intense media blizzard when she speaks to NR Times. It was sparked by her family’s appearance on TV land’s famous This Morning sofa.

“It’s been absolutely crazy and we’ve had an astronomical response with correspondence from all over the world,” she says.

Presenters Eamonn and Ruth were visibly moved as the tragic tale of Julie’s niece, Amy May Shead, was shared with the nation.

Amy (pictured above in therapy) used to work behind the scenes on the show as a bright, bubbly young researcher. Now, severely brain damaged following an anaphylactic shock brought on by peanut allergy, she understands everything but is unable to communicate beyond indications of “yes” and “no”.

The credits had barely rolled on the episode before Julie’s phone began glowing white hot with requests from editors and journalists across the globe.

Julie runs the Amy May Trust, which raises funds for Amy’s ongoing care and rehab in the absence of a compensation pay-out, and took hundreds of calls.

Amy’s story was subsequently relayed in every language imaginable by titles as far flung as the China Press, New Zealand Herald and Mexican Milenio.

“The overwhelming response has been one of shock at the severity of nut allergies,” says Julie. “People didn’t realise it could lead to such circumstances. On the other side of the coin are people with allergies themselves who are incredibly grateful for raising awareness. This is really important as we genuinely would hate anyone to go through what poor Amy has.”

At 26, Amy flew off for a long weekend in Budapest with her friends in 2014. On the third day she ordered a meal in a restaurant – only after following the strict regime she always did when eating out.

She verbally made staff aware of her potentially fatal nut allergy, she showed
them her allergy information card printed in their local language and received several reassurances that the chicken dish she had chosen was entirely free of nut products.

With the first bite, however, her throat tightened and she immediately went into major anaphylactic shock, leading to cardiac arrest. Two doses from the adrenaline auto-injector – or EpiPen – that she always carried with her failed to stop the reaction, although may have kept her alive.

For six minutes her brain was starved of oxygen, causing severe brain damage, and she was kept alive on a life support machine.

She spent three weeks in a Budapest hospital in an induced coma, with the depth of the coma increased three times to prevent further brain damage.

Eleven months in intensive care at St Thomas’ Hospital in London followed. She fought severe weight loss, septicaemia twice and the gastrological condition SMA brought on by her brain injury.

In 2015 she was transferred to the Royal Hospital for Neuro-disability in Putney and was later moved to a specialist care facility in Essex. Plans are currently being made for Amy to return to her parents’ home. Shockingly, public liability insurance is not a legal requirement in Hungary so no compensation was available to fund Amy’s continual rehab, despite a lengthy legal investigation.

“We have nothing but praise for the NHS as a family; they have been incredible and saved Amy’s life. But to allow her to progress, intensive treatment is needed and we have to pay for that and we understand that.”

The result is the Amy May Trust. Parties, runs and even a side-line in mail-order bags of wild flower seeds are among many things that have helped to raise funds so far.

The trust was also gifted free shirt sponsorship at Southend United, Amy’s local football club.

Julie runs the trust with her 24-year-old son Tom. As well as raising funds, it has also been lobbying for rule changes that could protect other people with nut allergies.

It launched a petition to ban nuts on airlines, and at the time of writing has almost 299,000signatures. An airline is effectively an airtight tube.

Open a bag of nuts anywhere on the vessel and dust particles are transported throughout, via the ventilation system. Serious consequences can result for anyone with an allergy. Amy’s welfare is of course Julie’s primary concern. And her niece’s positive demeanour offers hope of a brighter future.

“One of our happiest memories, which really demonstrated that Amy was aware, came when she was desperately ill at St Thomas’. Wonderful World by Louis Armstrong came on the radio.

We called this our family song and Amy was barely out of her coma but got upset. My sister and I hold this memory very dear because it had obviously triggered something in her brain that was familiar to her. It was an incredible moment.”

Julie is adamant that, despite everything the brain injury has taken from Amy, her personality remains perfectly intact.

“Amy was a vivacious, motivated and tenacious character. She also worked very hard and had a great sense of humour. She has retained these qualities. She works so hard with her therapists and never admits to being tired; she just wants to keep going.

“She has a huge sense of humour and laughs a lot. She really is happy. She also gets adult humour.”

Stimulation comes partly from a large circle of loyal friends, as well as her devoted family and parents, Roger and Sue.

“Her awareness has increased enormously over time and we know that she’s good at remembering things as she often laughs about memories she finds funny. Because her understanding is good, it’s amazing how you can muddle through even if someone can’t verbalise.”

Amy receives intensive physio and speech and language therapy – and has a weekly music therapy session.

“The therapists work intensively with her and she loves every moment of it,” says Julie. “I think the whole package of family, friends and therapists, and the constant attention that brings, really does help.

“The main therapists are very innovative in their approach and open to suggestions. We’re definitely keen to keep an open mind and try new things, as long as they are realistic options.”

Currently, Amy’s poor vision means brain computer interfaces, and their associated screens and controls, may not be the best solution to improve her communication. A specialist in America has been investigating the use of special goggles that may improve her sight. The family have also tried oxygen therapy. We will try anything that will realistically help Amy.”

A by-product of Amy’s publicity has been a massive surge in awareness of the potentially grave consequences of certain allergies.

This comes in an age in which intolerances to dairy, wheat and other foodstuffs have emerged – perhaps clouding the potentially deadly nature of allergies like Amy’s.

Figures suggest allergies of varying severity are on the rise, although there is no definitive scientific explanation of why.

Some scientists point to a rising trend of self- diagnosis and misconceptions about allergies and intolerances.

A study this year, meanwhile blamed adventurous middle class diners eating more exotic diets than previous generations.

In the UK, one to two per cent of adults have a food allergy. This, combined with the estimated five to eight per cent of children with a food allergy, equates to about two million people. This figure doesn’t include those with food intolerances.

Anaphylaxis-type reactions occur in approximately one in 1000 of the general population, while UK hospital admissions for anaphylaxis soared by 615 per cent between 1992 and 2012.

Peanut or tree nut-triggered anaphylaxis has an estimated prevalence of 0.25 to 0.95 per cent in UK and US populations (Cianferoni, 2012).

Such figures do little to portray how truly severe allergies can be, however. This is perhaps why Amy’s story so shocked the world, giving people their first real glimpse of the devastating power of certain allergies in certain people. In all of the noise and confusion that surrounds allergies, hers is a powerful cautionary tale that has made many think differently about a sometimes- trivialised issue.

Julie says: “It may be that there is some confusion between mild intolerances and serious allergies. “The media frenzy of the last few weeks can only be a good thing if it has helped people understand things better.”

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Interviews

Inspiring a brighter future for residents

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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.

Michelle Kudhail, director of clinical excellence at Inspire Neurocare.

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.

www.inspireneurocare.co.uk

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Interviews

‘My brain trauma caused my head to turn 180 degrees’

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Sarah Coughlin

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.”

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‘I’d never imagined using Zoom as part of my physio placement’

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Tabitha Pridham is a third year student at Keele University. 

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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