Having had a subarachnoid haemorrhage the day after full lockdown was imposed on the UK in March, Lee Atkinson faced the trauma of a lengthy recovery without seeing his family. Here, he shares his story of how he coped.
For millions of people across the country, the onset of the COVID-19 pandemic marked the start of a hugely challenging period. But for Lee Atkinson, that challenge was one of survival, after he experienced a subarachnoid haemorrhage the day after the UK went into lockdown on March 23.
Having felt unwell for about three weeks, Lee, a car garage manager, was seeking medical attention for his developing situation.
“He had been coming home from work feeling really tired and he’d had a few headaches,” recalls his wife, Petra.
“He went to the GP and they thought it was down to high blood pressure. He was even seen at the hospital for a scan and then he went back to work.
“But then I came home one morning after a night shift and found him collapsed in the bathroom.”
Lee, 47, was rushed to the Royal Preston Hospital, and underwent life-saving surgery after it was established he had experienced a haemorrhage. In the aftermath of his operation, Lee realised he had become partially paralysed and was struggling to communicate.
As the pandemic escalated, Lee was transferred out of hospital and into the Sue Ryder Neurological Care Centre Lancashire. The purpose-built centre had only recently opened its doors after an 18-month construction project to bring it to life, and fast-tracked its ability to welcome patients to help relieve pressure on the hospital and other local partners.
“I went into Sue Ryder on a stretcher on April 30, and at that point I was paralysed on my left hand side and my speech wasn’t great. I couldn’t use my left arm,” remembers Lee, a father of two.
“But over a period of time, they helped me get back on my feet, but they were very cautious with me.
“I had a set timetable over the week so everything was planned for me. It was really good for me to have that structure because I was in a bad place to start with. I was quite depressed but they really helped me through that.
“I was wanting to push to walk and they were being cautious because I had a period where I still had a hole in my skull from the operation. They leave it like that for about three months and you have to wear a helmet.
“I still have that helmet – all the Sue Ryder staff signed it for me. We really appreciate what they did. I was really lucky to be moved there.”
Due to the stringent restrictions on visiting imposed as a result of COVID-19, Petra was only allowed to visit her husband once in hospital, and with the pandemic escalating quickly, the opportunity for in-person visits was not possible at Sue Ryder, to protect the centre and its residents from the deadly virus.
However, keen to offer families the opportunity to be together however possible, visiting ‘of sorts’ was enabled by the team.
“After a week or so they let me and the kids go and visit him through the window, just to be able to do that meant a lot to us because we had not seen him for so long,” says Petra.
“Then, after a little while, Lee got better with his phone and was able to Facetime us. The staff were always happy to help with anything like that.
“It was obviously all new for the staff too, because usually the families would be really involved in someone’s care, but because of COVID, we weren’t able to be there.”
But while Lee was parted from his family, he was making strong progress in his recovery, buoyed by the thought of going home and working with the centre’s occupational therapy team to make that happen.
“We really didn’t know if he was going to walk again but the physio team were fantastic and some of the assistants who helped with the cognitive treatment were great,” recalls Petra.
“The staff really catered to his needs. They were so understanding about what he liked to eat and let him eat when he wanted to. They even got him involved in some games. They were just fantastic.”
On August 28, five long months after Lee’s life-saving surgery, he was able to return home, with the assistance of the Sue Ryder occupational therapy team. He is now supported by the local community team for ongoing rehabilitation.
“They arranged for Lee to have an overnight stay before he was discharged so we could make sure everything was in place that we needed,” recalls Petra.
“I went and picked him up and it gave me a chance to talk to them about things I was worried about. It really has changed our lives. It has changed everything. We were just a normal family before this.”
Lee’s recovery continues, but he is grateful for the support of the team at Sue Ryder Neurological Care Centre Lancashire during such a traumatic time for him, and particularly without the ability to see his family.
“I found it really helpful at Sue Ryder because while I was going through a really stressful time in my life, they were really great helping me to get through it,” adds Lee.
“I was just lucky that they were able to open when they did.”
How art unlocked a new future for brain injury survivor
Artist and art therapist Carl Arroyo, from therapy provider Chroma, shares the story of brain injury survivor Ricky, whose interest in tattoo art began a path towards a life with more possibilities.
I’ve been an art therapist for more than a decade now, and it’s an incredible way of drawing people out and allowing them to express themselves.
I started working with Ricky (not his real name) in the Spring of 2020, about a year and a half after his injury. He already had a multidisciplinary team around him, and it was felt that he needed something else to support him in adjusting to his experience and his injuries.
To be honest, Ricky wasn’t particularly interested in art as a whole, but he had a specific desire to design some tattoos based on his experience of his injury.
And that’s very much one of the skills that you have to have as an art therapist; that means of making a connection at some level and seeing where it takes you.
Tattoos are culturally acceptable and accessible – most towns have got tattoo parlours – so people of a certain generation find them appealing, and that certainly was the case with Ricky.
Initially, it was all about reflection, talking about the artwork, what that might relate to and then towards the end, we were looking at where he wanted to go and what he could do with his life.
And through all this was threaded the idea was that he was going to take the design he produced to a tattoo parlour and have it made into a tattoo.
One of the fascinating things that came through the design process was how he was relating it to his life, his injuries, and also his new place in the world.
His design was a skull with a crown on it, which was significant to Ricky both physically and emotionally. For example, as part of his immediate treatment following his accident, he had to have the top of his skull removed, because the brain was so swollen.
He was telling me about having this plate and the materials that they were using, and from that we had the idea to place a crown on there. And then that segued into talking about what the crown represents, in terms of Ricky being in charge of his own kingdom, and how his injury had changed how people viewed him.
One of the aspects of his injury he found hardest to deal with was being the centre of attention, surrounded by carers all the time, because in his life, in his family, he’d never had that attention. He’d not been listened to.
While he found it frustrating at times, paradoxically he came to accept that he was a king of this world and the attention was on him. The idea of the crown allowed Ricky to focus on some of the less tangible effects of his condition.
In the end, we had about 15 sessions, but, with lockdown, we were never able to meet physically and, sadly, by the time we could, he’d somewhat disengaged from the process.
However, prior to that, he was getting to the point where he could see that, if he wanted to create this new life, he was going to have to be more assertive and actually start asking for what he wanted.
And that wasn’t going to be an easy process. That’s what art therapy does; it’s about encouraging the creative process to give the patient a voice, and helping them find ways to cope with their new way of life.
Pioneering hippotherapy project delivers life-changing outcomes
A pioneering physiotherapy service for children and young people which engages them in rehab through horse riding has marked its 10th anniversary.
The Children’s Therapeutic Riding Service was the first of its kind in Scotland, and remains the largest hippotherapy service in the country. Hippotherapy is a specialist horseback form of physiotherapy, which can deliver life-changing consequences to children with disabilities, including brain injuries.
The service, delivered free of charge, attracts young people from across Scotland to its base in Muirfield and has helped hundreds of families during its time in operation.
As well as live animals, there is also a mechanical horse called Oreo, which responds to hand and leg movements like a real horse and is linked to a screen to give riders a technology-led virtual experience. The use of Oreo has been particularly important in enabling sessions to continue during the COVID-19 pandemic.
The Children’s Therapeutic Riding Service was founded by Susan Law, from Muirfield Riding Therapy (MRT) and NHS Lothian physiotherapist Heather Falconer, marking a groundbreaking partnership between the two organisations to deliver hippotherapy.
“I knew instinctively, from my years spent volunteering at MRT, that riding was of huge benefit but through meeting Heather and seeing her work, I could see how, through this physiotherapy service, we could help to change the lives of young people and their families,” Susan tells NR Times.
“If you have a child with a disability, it can be very isolating. Now, to see the difference engaging with our horses makes really gives a warm, fuzzy feeling. It’s very rewarding.
“Through our very specialist, physiotherapy-led service, we can accommodate rides for children with even severe disabilities.
“By securing National Lottery funding 10 years ago, we have been able to develop our hippotherapy service, which remains the largest in Scotland. We look forward to continuing our work into the future.”
Co-founder Heather explains the concept of their hippotherapy offering.
“Children are referred when their NHS Lothian physiotherapist believes hippotherapy to be the most effective form of physiotherapy for them,” she says.
“The children present with a huge array of challenges, including difficulties with mobility, balance, muscle tone, strength, coordination, body awareness and symmetry. Hippotherapy provides a means to address all of these issues and more.
“Hippotherapy uses the movement, warmth and rhythm of the horse as a therapy tool. As a horse walks, every step challenges its rider’s balance. This activates and strengthens the muscles of the trunk and pelvis.
“A 3-dimensional movement is transferred to the rider’s pelvis which mirrors the movement of a normal rhythmic human walking pattern, and gives experience of a normal walking pattern. The warmth of the horse and a gentle rolling gait can relax tight muscles, while a more choppy movement can increase low muscle tone.
“It is great fun, both for me and for the children I work with, for them it doesn’t feel like therapy, but delivers consistently amazing results.
“It is also much easier to connect with a child and for them to trust me using the ponies or Oreo as an intermediary. It is a 3-way therapeutic relationship, 4-way if you count the volunteer key workers too.”
Charlie Kay, aged 13, has been using the service throughout its time in operation.
“The best part about the riding service is that Charlie sees it as more of a hobby than a therapy session. He has seen a real knock-on effect in mobility and his walking is so much better,” explains Melanie, Charlie’s mum.
“As the riding engages his core he is sitting up better and straighter. Not only is it great for his physical health, but Charlie also enjoys the social aspect of speaking to all the volunteers and staff.
“Not only are the sessions helpful to Charlie, I find I get great advice joining with other parents in the viewing gallery. I am very grateful to have the opportunity for us both to use this incredible service.”
‘If we’d stopped and thought about the scale of the task, we’d have fallen over…but we did it’
The Sue Ryder Neurological Care Centre Lancashire opened, after years in the planning, during the height of the COVID-19 pandemic. Centre director Terry Mears and neuro rehab lead Hannah Halliwell share their experience of such a difficult, yet rewarding, time.
Opening a new specialist neurological care and rehab centre is a seismic task in any climate – but to do so at the height of the COVID-19 pandemic is probably a feat few would attempt.
But having been badly wanted and needed in its area for over 15 years, and after an 18-month construction and development project, the Sue Ryder Neurological Care Centre Lancashire opened its doors to patients in April.
The purpose-built centre, which has 40 bedrooms and four apartments, offers level 2 post-acute rehab support in a state-of-the-art environment – alongside palliative and end-of-life care – tailored exactly to the needs of its residential and day clients.
It is a first for the Sue Ryder group in terms of the breadth of its facilities and holistic rehab offering, and has been hailed as a beacon on a UK-wide basis, both in terms of the quality of the centre and its offering, as well as the local strategic partnerships it has established.
And while the plan, revised in light of the pandemic, was to delay its opening to patients to ensure the 180-strong team had time to settle in to their new roles and adapt to stringent safety procedures, demand for its specialist facilities and services meant they had to take its first clients rather earlier.
“We found out on April 23 that we would need to take our first rehab patients the very next week. We took seven people initially, which rose to 14 shortly afterwards, some of whom had very complex needs,” reflects Terry Mears, centre director at Sue Ryder Neurological Care Centre Lancashire.
“National lockdown came three weeks before we were due to move into our new building. We had daily anxiety about whether this would happen and had to completely redesign our project plan. Moving was scaled back from seven days into two, and recruitment was speeded up and interviews took place by video.
“I think if we’d have stopped and thought about what we were doing, and really considered the scale of the task, we’d have fallen over. But we did it, and it was the most amazing team effort, absolutely everyone in our team played their role in getting us in and geared up to take clients.”
“We hadn’t realised the speed at which we’d need to mobilise. We came here with a robust project plan and anticipated taking our first clients in maybe May or more probably June. This was a new centre and most of our team were new to Sue Ryder, so there was a huge amount to get right in a very short time,” says Hannah Halliwell, neuro rehab therapy service lead at the centre.
“However, our role in taking patients was very important in supporting our partnership strategy through providing valuable bed capacity at the height of the pandemic. We played our role very well.”
While many centres were closing to new patients during the period, several of the initial intake at Sue Ryder have already been discharged, having achieved strong outcomes.
And from opening until this point, the centre has remained completely COVID-19 free.
“We really have worked around the clock to keep everyone safe,” says Terry.
“My biggest fear from the very beginning was having COVID in our centre, particularly with so many staff and being in a Tier 3 area, as well as admitting from an acute hospital, but we have not had one confirmed or even suspected case of COVID.
“We have done absolutely everything we possibly can to get it right, but the work will continue and the pressure we put on ourselves to ensure we maintain this COVID safe environment will continue as long as it is needed. There’s an added intensity now not to let our guard down.”
While family visits have not been permitted from the outset, in line with national guidance, the centre has differed from many others by allowing visiting for its end-of-life patients.
“We have always been committed to doing the right thing and we felt to deny a family that opportunity to say goodbye to their loved ones posed a far greater risk to that family, in terms of the impact it would have, than COVID,” says Terry.
“We have had to take measured risks, including in being able to deliver discharges, but we have looked at these situations individually and did what we felt was in the best interests of our clients and their families.
“We are very hopeful visiting may become more commonplace soon, we have been earmarked to be at the front of the queue for vaccinations and are also getting lateral flow testing kits, so they will help us to finally be able to welcome families into our centre. We know how desperate they are to hug their loved ones, we’re desperate for them to do that too, and we can’t wait to show what we have here.”
Hannah adds: “While it was a challenging time, admitting our first patients was also a special and memorable time. I’ll always remember those first few patients and their stories.
“One of them was a young man who had suffered a sub arachnoid haemorrhage on the day the country went into lockdown. He came to us having to be hoisted and with significant speech and language and cognitive problems, but when he left four months later, he was moving independently and had huge life-changing outcomes.
“In those initial few weeks when he couldn’t move his arms to hold his phone, to video call his wife and children, we held it for him. We supported him with absolutely everything we could, in every way we could.
“We are so proud to have returned a husband and family to his wife and children, having achieved such amazing outcomes during one of the hardest times imaginable for healthcare.”
Going forward, in the short term, the centre hopes to welcome more patients once it is safe to raise capacity from its current 14, as well as opening its apartments, which are to enable patients to experience independent living pre-discharge.
Longer term, it hopes to become an example to others as to what is possible.
“We are so proud of what we have here,” says Terry.
“Our strapline is that we will change things for a generation, and that’s what this centre will do.
“I think Lancashire has the potential to be a centre of excellence in the UK and even on a European basis through what we have created here through the strategic partnerships that have been created and our community infrastructure. It has all come together into something which can inspire others.
“We have lit the torch paper and I believe this is the beginning for us to take forward.”
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