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Inpatient rehab

‘I could either complain or do something positive’

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Caroline Critchlow has helped raise funds for the hospital's neuro ward

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

Inpatient rehab

Family hail ‘amazing’ care at neurorehab centre

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Fraser Millar and his family

A family whose beloved husband and father had a stroke are fundraising for the neurological centre where he currently resident, after being impressed by the “amazing” standards of care.

Fraser Millar needed life-saving brain surgery in November last year and is now in Woodlands Neurological Care Centre in York, receiving intensive rehabilitation to aid his recovery.

Woodlands, a level two neurorehabilitation centre which is part of Active Care Group, specialises in maximising recovery and independence and sets patients rehabilitation goals that promote re-enablement and enhance quality of life.

Now, Fraser’s family – wife Debs and children Alex and Ryan – are fundraising on behalf of Woodlands, to purchase therapy equipment which will benefit people who are undergoing rehabilitation at the centre.

To remember the long walks Fraser and Debs used to enjoy so much, Debs and daughter Alex are walking the equivalent 230 mile distance from York to Perth in Scotland, where Fraser is from.

Having set a target of £500, the total now stands at over ten times that amount, with over £5,680 being raised at the time of writing.

Family, friends and work colleague donations have come from as far afield as Canada and Australia, from people inspired by the Millar family’s story, which has been widely shared on social media and is touchingly accompanied by the hashtag #comeondad.

“We feel the team at Woodlands have become extended members of our family, they’ve been amazing,” says Alex.

“One of dad’s hobbies is cooking, he’s an amazing chef and loves to watch cookery programmes on TV in the kitchen at home. Woodlands staff noted this on his arrival day and within 20 minutes dad was watching The Hairy Bikers in his room and he continues to watch various culinary programmes!

“Staff there make a huge effort to make dad comfortable, take great care of his needs and interact with us brilliantly, we’re so thankful and extremely happy he’s having the best care.

“We’re raising money to say a huge thank you and while we’re doing it for dad, it’s great that it will benefit other patients too.”

Debs and Alex initially set a target of completing their walk by March 7, which is Debs’ birthday, but typical of their determination, they had already finished by February 24. Their fundraising target has also been vastly exceeded, with donations continuing to come in by the day.

“We initially thought our family and close friends would help with our fundraising cause, but the charity page was quickly circulated and within hours are target was met and the figure kept rising, we couldn’t believe it! We are incredibly thankful for every donation,” says Alex.

“We feel so touched and overwhelmed to have had such amazing support for dad. We walked the long miles but the generous donations kept us going and without them we wouldn’t be in the position to present Woodlands with the equipment they deserve.”

To add support to the Millar family’s fundraising on behalf of Woodlands Neurological Care Centre, visit https://www.gofundme.com/f/woodlands-neurological-rehabilitation-centre

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Inpatient rehab

Build your A Team

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Craig Pankhurst - former athlete and A Stroke of Luck founder

After Craig Pankhurst had a stroke, he saw the need to promote a greater positive outlook amongst survivors. Here, the successful former athlete and businessman discusses his new venture – A Stroke of Luck, a charity dedicated to post-stroke exercise-based recovery – and why survivors need their very own A Teams.

With a background as an elite international swimmer and successful business owner, it’s little surprise that Craig Pankhurst is pushing forward his latest venture with the drive and determination which have been the staples of his professional life so far.

But his latest venture is one with a difference – far from the high-pressured worlds of top-level sport and corporate demands, Craig is now creating significant momentum around a charity which seeks to support people in rebuilding their lives after a stroke.

A Stroke Of Luck – a name chosen to reflect the positivity with which Craig lives his life, and which punctuates the work of the charity – offers a range of exercise-based resources, direction and advice to people who have experienced stroke, empowering them to move on with their lives.

And as a fellow stroke survivor, Craig – who experienced his stroke in April 2018 – knows only too well how badly that is needed.

“I’m lucky that I have a positive outlook on life, and for me surviving a stroke was the biggest hurdle I had overcome, there was an element of luck in that,” he says.

“But as I looked at what was out there for survivors like myself and joined a number of online groups and communities, the overriding emotion was one of negativity, resignation, a victim mentality. That made me really sad.

“I thought that if I have been blessed with this positive mindset, then I can help other people get that too and show them there can be a positive future post-stroke – and that’s where A Stroke of Luck came from.

“Now, when people say ‘I’ve had a stroke, what’s next?’ I can say ‘We’re next’.”

Through an array of engaging content and innovative initiatives – from online exercise videos to Friday Live Q&A sessions with guests who have experience of stroke, either professionally or personally – A Stroke of Luck is supporting stroke survivors across the UK to move forward with a new-found confidence in themselves and their capability.

In another unique and inventive approach, survivors are also encouraged to build their ‘A Teams’ – the name inspired by the 1980s classic TV show – which brings together people whose different strengths and attributes can combine to give the support they need.

“Sport is my thing and I’m convinced people have a more positive and successful journey with the right people around them – and that’s the same in a survivor’s recovery,” says Craig.

“The survivor, as the captain of their A Team, has to play to the strengths of the team – whether that’s family, NHS, therapists, charities, whoever it is that surrounds that survivor, they need to make an assessment on when and how to bring the team members in.

“You don’t want to go to someone for an arm around the shoulder who you know is more of a practical person, or else they’ll end up frustrated at not being able to give what you need, and you’ll end up disappointed.

“If you think hard about who is around you and pick a team which has the attributes you can call upon, which you use at the right time for you, then like in sport, you can achieve much greater success.”

As a theme which runs throughout the charity’s approach, and even its branding, A Stroke of Luck makes use of a novel ‘traffic light’ principle, which enables survivors to articulate feelings or levels of ability, which may be constant, or else vary throughout each day.

“My daughters were only eight and 12 when I had my stroke and one of the main effects for me was the fatigue,” says Craig.

“Trying to explain neurofatigue was very difficult, so we used green, amber and red to help.

“When daddy is in the green zone, he can walk, talk and function pretty much as before. I’d start to fatigue throughout the day, so might then go into amber. But if I was in the red zone, and we were sitting in the living room chatting, cognitively I’d understand everything, but trying to verbalise that was impossible.

“So, by using the colour coding, that helped us all to understand the level I was capable of functioning at.

“It was something I used in business a lot – you’d have your green clients who you were certain of retaining their business, through to the red ones who you’d need to wrap your arms around – but it translated very well into our situation.”

During the pandemic, the exercise sessions offered by the charity really came to prominence among the stroke community, with A Stroke of Luck working alongside The Stroke Association to create a 12-week programme tailored by Neuro Physiotherapists, and again working to a traffic light principle.

For Craig, promoting the concept of exercise is hugely important, with his own experience being a case in point.

“When I had my stroke, I’d gone from being an elite athlete in my early to mid 20s, training every day and having less than six per cent body fat, to the ultimate sedentary male aged 39. I’d neglected my physical and mental health,” he says.

“While I was as relentless in business as I was in the swimming pool, the lifestyle I was leading, working ridiculous hours, couldn’t continue.

“My stroke was the best thing that happened to me, and although that might sound twee, it gave me the kick up the arse I needed.

“After my stroke, I realised the huge importance of exercise, not only for physical and mental health, but also for a positive mindset and outlook on life.

“We had a fantastic response to the exercise videos we created, which focused on a different body area on each of the 12 weeks, and again were accessible for everyone through the red, amber and green, which made them as available for those people who have limited movement as those who can exercise independently.

“We’re now seeking funding to build the next move of this content – there is an ongoing need and desire among stroke survivors for a resource like this, so the ambition is to do more.”

And alongside plans for more exercise videos – which, to date, have been viewed well over 20,000 times – Craig is also looking to develop the A Stroke of Luck website into a platform to connect survivors with the right therapists for them.

“I’d probably liken it to a dating site in some ways, on one side you have your survivors, then on the other the experts – it could be speech and language therapy, neurophysio, any service provider – and our platform can link the two,” says Craig.

“We understand that for many people in accessing these types of services, finance may be a barrier, so we are creating a system where we can give them digital credits to pay the therapists – which are based on means tests and a needs analysis – so if people don’t have enough cash, we’ll pay for it for them.

“Plans for this were well underway, but then the pandemic hit – but it’s something we will certainly pick back up.

“It’s so important that stroke survivors can access these services and we can support them not just to find the right provider for them, but also to finance it, if that’s what they need.”

To help raise funds for this initiative, and to sustain the wider work of the charity, A Stroke of Luck has launched its 99p A Month campaign. This campaign and the subsequent donations will be used to fund the development of more stroke-specific content which will support survivors in their life after stroke.

To donate 99p per month, visit the website at www.astrokeofluck.co.uk

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Inpatient rehab

‘After all we’ve been through, it’s such a relief that we can see light at the end of the tunnel’

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STEPS offer specialist neurorehabiltation based in Sheffield

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.

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