As the roadmap out of lockdown is revealed, many are daring to see the light at the end of a long and dark tunnel, after months of huge challenges for neurorehab centres. Here, Jules Leahy at STEPS reflects on many difficult months and discusses how optimism is returning.
“The early days of the pandemic were very scary for centres like ours.
With little access to PPE, we had to resort to making our own out of bin bags when supplies just weren’t coming through, and sourcing our own was hugely expensive as it was so in demand.
We also had to fight hard to avoid COVID getting into the centre, which could have caused a deadly outbreak among our clients, all of whom are very vulnerable.
We refused to accept a client back into STEPS from hospital until he had been tested for COVID, which wasn’t being routinely done in the early days of the pandemic, but we insisted on it.
As much as we wanted him back, we needed to know if he was COVID positive or not so we could manage the risks appropriately. Our other clients and team would have been at risk if we hadn’t have found out he was positive and nursed him with the appropriate PPE.
People’s lives were at stake and we wouldn’t accept no for an answer.
We established he did indeed have COVID-19, so then quickly reorganised our building to create an entirely separate isolation area, which enabled him to come back to us while ensuring the protection of our other clients.
Looking back, that was a hugely challenging period – but thankfully things turned a corner quite quickly afterwards. After those awful first few weeks, the huge quantities of PPE we needed then started to come through and that made a huge difference.
Our staff have been absolutely amazing, we’ve all been in it together and have been there for each other every step of the way during long shifts, difficult times and sometimes tears.
We have three COVID tests every week and the new daily essential tasks of putting on PPE and washing hands regularly have been embraced and now feels like second nature.
It’s been a long slog, but we feel like we’re getting there.
The vaccination has been such a relief for everyone and the process has been done very efficiently.
Our local GPs are brilliant, they have vaccinated our team in three batches, one even out of hours on a Saturday evening. Our clients are also being vaccinated, which gives them a bit of hope and some light at the end of the tunnel, particularly with regard to being able to see their families.
One of the hardest parts has been our clients not being able to be close to their loved ones. That is heartbreaking and hasn’t got any easier.
We started doing drive-by visits in June, and we now do visits outside and have converted some space inside so visits are possible in some circumstances, but it is so upsetting that our clients can’t touch the people they love the most. It is genuinely heartbreaking to watch.
Pre-COVID, we didn’t have set visiting times so we had family members here all the time, they’d sit playing games with their loved ones, join them for meals, watch their therapy sessions, and many other things.
Lots of family and friends in the building was normal for STEPS and they helped to create the special atmosphere here. We all miss that incredibly, and we know how much the restrictions affect our clients.
Our staff have done an amazing job of stepping in, in the absence of family visits. The rehab intensity hasn’t changed at all and our clients have continued to progress accordingly.
What has been lovely to see is the relationships they have developed between each other, this has been fantastic and vital these past year.
Our team have worked so hard and have sacrificed so much in terms of choosing not to see friends and relatives, even when Government advice allowed it, so they could ensure the safety of our clients and their colleagues.
Many have opted to stay at work even when they’ve finished their shifts – sometimes we have parties for clients, if they’re leaving or for their birthdays, which many of our staff attend even if they’ve finished for the day.
Recently one of our staff bought a jewellery making kit for one of our clients, and they did it together one evening. To say our team are going above and beyond is really an understatement.
We’ve been amazed by the kindness of people.
When we couldn’t access enough PPE at first, we had donations of masks and gloves, and local schools were making visors for us. Wakefield Girls’ High School made us scrubs.
A company called Seoul Engineering in Korea sent us a huge delivery of masks, gloves and sanitiser at a time when PPE was very scarce in this country – that donation would have cost us £1,500 to buy at the time.
We also had clients’ families and local businesses sending us treats and goodies to take home. One lady donated 150 Easter eggs for our staff, Stewarts Solicitors sent us edible goodies and France & Associates sent us a hamper of pamper products. Even taking one little face mask home gave a huge boost to our staff, it was so appreciated.
Enabling those precious meetings with loved ones
With the creation of a ‘visiting pod’ – a specially-built room with a perspex screen – patients at Woodlands Neurological Rehabilitation Centre have been able to enjoy precious meetings with their loved ones during lockdown in the security of COVID-19 safe surroundings.
“We have tried so hard to be reactive to patients’ needs throughout the pandemic and the fast-changing situation, and were all too aware that visits from families are vital for their mental wellbeing,” reflects Dr Marina Platts, clinical director at Woodlands, in York.
“We had some workmen in the building at the time, so wondered whether we could create a little place where families and patients could get together in a safe way.
“Through the creation of our visiting pod, that was allowed to happen, at a time when most other places couldn’t accommodate it. Thankfully, through us having a side entrance right next to the pod, families could come and go without coming into contact with anyone else.
“We were very responsive to the feedback as well – while families were very complimentary about the idea, they said it was quite hard to hear through the screen, so we installed an intercom, which really made a difference.
“I’m really pleased we did that, I think that has been so important to so many patients and their families.”
And while the visiting pod was a measure which created an instant boost for patients, the work going on behind the scenes to strengthen the relationships between Woodlands and local medical partners – the Vale of York and Scarborough and Rydale CCGs, alongside York Teaching Hospitals NHS Foundation Trust, where Dr Platts is a consultant – ensured the centre has remained at the forefront of new developments.
“We’ve been really pleased at how embedded we’ve been in the local health community throughout the pandemic, and how supportive our partners have been of us,” says Dr Platts.
“We’ve worked very collaboratively. We’ve had the support with COVID testing for patients from the hospital, as well as with quick turnaround for swabs and blood tests. Not long into the pandemic, when PPE was difficult to get, they gave us a whole batch of long-sleeved gowns and FIT tested our staff for PPE3 masks.
“As a rehabilitation centre, we’re not an acute hospital or a care home, so we weren’t covered by specific guidance and there was a danger of us falling through the cracks. So with the vaccination programme, for example, the relationships we have were very important in securing this for our staff and patients.
“There has been very quick turnaround of funding to enable us to admit new patients, which has helped to take them out of hospital into a more appropriate environment for them, so we have played our role too.
“We are a big believer in working together with our healthcare partners and others. We make sure we thank everyone who helps us on Twitter, as well as in person, and the message always comes back that they’re happy to help. I think everyone is trying to do their best and by pulling together and working in collaboration, we’re all helping each other.”
And despite the restrictions, meaningful rehabilitation has continued at Woodlands, a level two neurorehabilitation centre which takes patients, the vast majority of whom are NHS-funded, from three local Yorkshire CCGs.
“We’ve been as dynamic as possible and have still been able to discharge patients during the past few months, we certainly haven’t rested on our laurels,” says Dr Platts.
“We’ve continued the rehabilitation pathways of our patients, but in a different way. We did rehabilitation work in the centre, alongside therapy-led home visits and outdoor mobility work, throughout the period to as great an extent as the Government guidelines allowed. In the early days, the senior team here were meeting every day to establish what that meant and how far we could go.
“We’ve always been committed to doing what is best for the individual patient, while being mindful of our duty of care to our other patients.”
The investment in Woodlands – owned by Christchurch Group, part of Active Care Group – has continued too, despite the pandemic.
“In the past couple of years, there have been big changes here, we’ve gone from more of a respite centre to a very active acute neurorehab environment,” says Dr Platts, whose arrival helped spearhead the change.
“We’ve invested in everything from safer beds and mattresses through to the full refurbishment of our independent living flat, which took place over the past few months, and the ongoing addition of new equipment.
“We are now operating a high-quality rehab centre and will continue to invest and built on our progress even further. The future is looking very positive for us.”
‘By the time we emerged from lockdown, I had learned to walk again’
In April last year, due to a rare neurological disorder, Barry Whaite could only move his head independently. But by the time the country emerged from the first lockdown in August, he had regained the ability to walk. Here, he shares his story.
“I had initially been suffering from a chest infection and was taking antibiotics and steroids, as prescribed by my GP. I was not improving and eventually I fell a couple of times, then on 17 February last year, I was unable to stand up.
An ambulance came and took me to the Royal Preston Hospital, where after an MRI, a CT scan and a lumbar puncture, I was diagnosed with Guillain–Barré Syndrome (GBS).
I was given an immune therapy drug to stop the illness progressing to my lungs. I was now totally helpless, needing a hoist to move me.
I was transferred to the MRU. where I underwent rehabilitation. Unfortunately, due to Coronavirus, I was put into self-isolation and was transferred to a nursing home in Preston. The staff there were not able to deal with my illness, so my wife and daughter made arrangements for me to be brought home.
The consultant from the hospital, Dr Shakespeare, came to visit me to explain that the new Sue Ryder Neurological Care Centre Lancashire was due to open, and that it would be in my best interests to take up residence there.
I agreed, although reluctantly, to go for three weeks, as I was not progressing at home. I was unable to move, and was advised that the Community Rehabilitation Team would not be able to come to the house.
When I was admitted on 29 April, the only part of my body that I could move independently was my head.
I was depressed initially and this was compounded by the fact that I could not have any visitors. My daughter came every week and left cordial and goodies for me, to keep my spirits up.
I made great progress at the centre. I was hoisted for the first few weeks, and with their care and patience of the Sue Ryder team, I was taught to roll over on the bed, put my legs over the side and sit up without falling over.
The senior physiotherapist supported me into a standing position for a few seconds, then caught me on the way down. This made me believe that I would eventually stand again and spurred me on.
They introduced me to the banana board, which I hated with a passion! Eventually I managed, with assistance, to move from the bed to the wheelchair and to the toilet.
The next episode was to the gym with my ever-trusty banana board. There the physios worked on my legs and feet, then I needed to rest in order that my muscles could recover.
In the gym, I was also shown how to stand using the plinth, which the team raised slowly, forcing me to stand up.
That day gave me hope. I learned ‘sit to stand’ and then I was introduced to a walking frame.
On my second goal-setting meeting, I celebrated my birthday and as a treat, the staff had decorated my room, made me a birthday cake and organised a new self-propelled wheelchair.
At last, I had some freedom.
My family visited on the day, and I was allowed to speak to them in person through the door, albeit two metres apart. This was the first time I had seen them, other than on FaceTime.
I slowly progressed with the help and encouragement of the rehabilitation team. They went on to show me how to deal with my personal care so I could become more independent.
I then became involved in more activities with the staff and other residents, including bingo, quizzes, Jenga and jigsaw puzzles.
Later, I had a home visit to see what equipment I would need to support me when I was discharged, such as a shower seat, internal hand rails, perching chairs and an enhanced toilet seat. All these items were provided, together with a four wheeled walker. The only difficulty I had was gaining access to, and leaving, my home through the main door due to the steps.
On my return to the Sue Ryder Neurological Care Centre Lancashire, I was offered a further three weeks’ stay, in order that I could master a few steps, as my walking ability (with the aid of the walker) had improved dramatically.
I was discharged on August 5 to a Guard of Honour, and a round of applause and the staff singing ‘Take Me Home Country Roads’!
The occupational therapist and physiotherapist brought me home and helped me settle in.
I have nothing but praise for Sue Ryder Neurological Care Centre Lancashire. Without them, and had I remained at home, I am sure that I would still be bed ridden now.”
‘I could either complain or do something positive’
The neuro ward at Aberdeen Royal Infirmary has a new lease of life thanks to the wife of one former patient, who was inspired to act by how underfunded it was. Now, Caroline Critchlow is turning her fundraising attention to another neuro centre, with plans to create a therapy garden
Although it was back in 2013 that her husband underwent major brain surgery, Caroline Critchlow remembers it like it was yesterday.
Not just for the understandable trauma, anxiety and distress caused by your husband undergoing a 22-hour operation, the longest ever performed at Aberdeen Royal Infirmary – but equally for the state of the hospital neuro ward, which will forever be ingrained in her memory.
“It was in a terrible state. The day room was in dreadful condition, which is the place relatives like me waited, and where patients took a break away from their beds. When you went to the loo, the toilet seat was cracked; the lino was held together with tape; the coffee table was broken; the wallpaper was peeling off,” recalls Caroline.
“I was shocked how underfunded it clearly was. There were families here for hours on end, waiting for their loved ones who are undergoing and recovering from major operations, and this was what there was.
“We came from Orkney, which is a huge journey, and there are families travelling from even further than that, and this was their only place to wait. Often patients on infusion leads had to stand as there was nowhere to sit.
“When my husband Kevin went in for his operation, the staff said I could go shopping, as there was nowhere for me to wait. As if I could go shopping! I found the lack of proper facilities quite shocking.
“But I decided that I could either complain about it, or do something positive. And that’s where it began.”
Inspired to make a difference, and help other patients and their families who found themselves needing to make use of Ward 205, Caroline set about fundraising to make change happen.
And through the creation of Friends of the Neuro Ward, Caroline and her team of volunteers – with the support of “miracle man” Kevin, who happily recovered from his major operation – have been enabled to deliver the improvements which were so badly needed.
With fundraising efforts spanning across Scotland, Caroline and Kevin even opened up their own garden, The Quoy of Houton on Orkney, to raise vital funds.
“I thought by opening up the garden, we’ll be able to buy a sofa for the day room, and go from there. But quickly we’d raised over £1,000 and were receiving fantastic support, and I realised we could perhaps make even bigger change,” she recalls.
And more than £400,000 later, the funds continue to come in and change continues to happen.
The day room – which inspired Caroline’s quest – has now been fully refurbished, a respite and quiet room has been created, and new wet rooms have been created for the close observation unit.
Equipment including motorised shower trolleys, a facial palsy monitor unit, specialist patient transfer scales, hoists and head injury equipment has also been purchased, to ensure the dedicated staff have access to the best equipment.
Caroline’s efforts even extended to playing a leading role in lobbying for a full refurbishment of the ward, securing £4 million.
“I must say I’m really pleased with the day room. It looks like a sitting room, the kind of room you’d have in your own home, it’s so far from what it was,” she says.
“The respite room is so well used, particularly by people who’ve come all the way from Orkney and Shetland. The money we’ve raised has gone a long way, and has made some very positive change.”
And having transformed Ward 205 in Aberdeen Royal Infirmary, Caroline then turned her attention to the neurorehabilitation ward at nearby Woodend Hospital. The 13-bed standalone unit was similarly in need of modernisation and investment – and similarly, Friends of the Neuro Ward stepped in to make change happen.
“We were able to buy new hoists and other equipment, and we go in at Christmas with presents and at Easter with eggs, and wanted to make it a more positive experience for those who were in there,” says Caroline.
“But I also noticed their garden. It’s a great space which should play a really important role in the neurorehabilitation they offer there, but it’s not fit for purpose. So I want to change it.”
And Caroline – a renowned gardener and regular ‘gardening guru’ on BBC Radio Orkney – made that her next mission. She brought in James Alexander-Sinclair, one of the UK’s foremost garden designers, to create a vision for the space.
“It is absolutely wonderful, with the most fantastic therapy centre with a planetarium ceiling, it will be the most wonderful addition to the ward,” says Caroline.
“It will be colourful and relaxing, and will have intertwining paths wide enough for bed-bound patients and those in wheelchairs to move around. There will also be a dedicated therapist available.”
And with around £50,000 to go before the dream can become reality, Caroline is committed to continuing to drive the fundraising forward.
“It is challenging to raise funds in the current climate, and the scope to hold events is limited, but we will continue to do everything we can. We are holding Paws Across Scotland, a virtual dog walk, and we’re looking for a patron to help us move even further forward, so we’re always busy and we’ll keep on going,” she adds.
* To support the ongoing fundraising efforts, visit www.fotnw.org
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