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‘If we’d stopped and thought about the scale of the task, we’d have fallen over…but we did it’

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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.”

Interviews

‘I lived in pain for so long – finally I’ve found a way to manage it’ 

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Despite a cycling accident, Ian has managed to get his life back

Having been left with serious injuries in a cycling accident, Ian recovered from the physical impact but continued to suffer chronic pain. Here, he discusses how he has learnt to deal with it and get his life back on track.

“About two years ago, I was involved in quite a serious accident while I was out on my bike. I flew over handlebars and hit my head on the ground, leaving me unconscious.

I was left with an array of injuries, including decompression of two of the disks in my spine, which needed an operation to resolve. But from being in the ambulance after my accident – the earliest point I can remember after coming off my bike – I was in enormous pain.

While over time I have managed to recover my body functions, having struggled in the aftermath of the accident, I continued to experience pain. Most days were pretty tough. I was on a lot of medication, which contributed to my fatigue.

I was sleeping a lot, spending a lot of time in bed, I was very tired all of the time and in a lot of discomfort.

I’d always been very, very active, and enjoyed cycling, motorcycling, tennis, walks with friends and family, I was a very outdoors person – but that all came to a halt. The most I could manage was a short walk, and even then I was very fatigued.

I didn’t understand what was happening to me or why, it was just continuous, unrelenting pain.

By this point I had returned to work and the demands of my job. I was just about managing to keep on top of my commitments, but only just.

With a wife and two young daughters, my life had typically been very busy and very active, but now I was unable to do as much together, or spend as much time as I’d like with them.

This went on for over a year, and was, without doubt, the toughest time of my life.

My case manager helped me to find a solution which has enabled me to rediscover my life, through a programme called RESTORE, pioneered by RTW Plus. 

Through RESTORE, an online learning programme which supports you to understand and manage pain, and take back control of your body and life – which enables access to a consultant and support from health coaches 24/7 – I have been educated in what I can do to help myself.

All of a sudden, from not knowing what had happened to me and feeling helpless, I was supported in understanding what was going on.

Prior to that, what had happened wasn’t described to me that well, and I had so much medication that everything was often quite blurry. The concept of chronic pain wasn’t something that was addressed once my physical injuries had healed.

Through this programme, I was educated as to what had happened to me. As a keen cyclist, I’d had many accidents in the past, but all were short-term tissue damage, which were very painful at the time, but that pain went away. I now was able to understand why this time was different, and to be realistic in my expectations.

I’ve never been good at pacing myself, but now I was able to stop and think what it was I was trying to do, what I wanted to do, and how to manage and achieve that.

Crucially, by understanding my pain, I became less frustrated and less dependent on medication, meaning my life would not always have to be a cloudy blur. I became more confident as a result.

From believing this was how my life was going to be, not very pleasant and full of pain, now I had hope and confidence it was going to get better. There was light at the end of the tunnel.

Understanding more about pain got me really engaged, and I started reading about it and looking for examples. After work, I’d be picking up books and learning more. Having the knowledge about what is happening to you, and how to help yourself, is so powerful.

Having been able to come to terms with my pain during the 16-week course – it’s usually eight weeks, but was tailored around my busy work schedule – I could then get my life back on track, backed by the confidence I had rediscovered.

I’m now cycling every other day, which I haven’t done since my accident, and am getting my life back to what it used to be. I’m doing things that matter and spending time with my family, which is what it’s all about.

I realise I am on an ongoing journey with my pain, and that hasn’t finished and will continue for some time to come, but I’m in a good place now – a place I could never have imagined being a few months ago.”

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Interviews

‘I lost my sense of smell through brain injury – I’m grateful COVID has shone a light on its impact’

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Smell loss if one of the long-lasting symptoms of COVID-19

Having been in a near-fatal car accident, Sally Smith has recovered physically, but a brain injury resulted in the permanent loss of smell. Here, she discusses how the once-tricky subject has now become much more accessible through its association with COVID-19.

I used to love the smell of Christmas. I honestly think that was my favourite part. The mulled wine, the spicy fragrances, the turkey dinner cooking – that really made Christmas for me.

However, for the past five years, I’ve had to live without this, after losing my sense of smell as a result of my brain injury. As 80 per cent of the flavour of food comes from its smell, my sense of taste has also been seriously impacted.

It has been a pretty life-changing experience, one which I could never have appreciated the impact of. Christmas certainly isn’t the same, but neither is any other day.

The smells of summer – the cut grass, the flowers, the barbecues – all lost. The overpowering sensation of walking through the perfume departments of stores is something I can only remember. Even the smell of burning to alert me to the fact I’ve left the dinner in the oven too long is gone forever. And the taste of my favourite foods and wine is also tainted, with a flavour so faint often I wonder what is the point.

While people are sympathetic, they don’t understand. But how could they? I’m not sure I could have prior to my own experience.

Often, their sympathies extend to something like ‘Well at least you’ve still got your hearing/sight’ as if it’s some competition between the senses. Or ‘At least you’re still alive,’ which is quite dramatic, but nevertheless true.

I did come close to losing my life in a car accident five years ago. As a back seat passenger, I bore the brunt of a lorry crashing into the back of the vehicle I was in, and suffered a range of injuries, my brain injury being the one which still affects me now and always will.

I was undoubtedly lucky, apparently it was miraculous I survived, and I do feel so fortunate to have few other lasting affects apart from my loss of smell.

The topic was one that there were few opportunities to talk about, as devastating as it was personally for me, given the fact that so few people had experienced it for themselves.

Until a few months ago, that is, and the fact that loss of smell become a symptom of COVID-19. Suddenly, it stopped being a subject that was just plain weird, and one that everyone was talking about. People began to understand.

My next door neighbour had COVID-19 and lost her sense of smell for a short period. ‘It was only at that point I realised how horrendous it is,’ she said to me after her recovery. ‘Who knew I’d actually miss the smell of my daughter’s dirty nappy?’

And while that’s perhaps not something you’d ever think you’d miss, when you find yourself in the situation of not being able to smell anything at all, however divine or revolting, you do feel a great sense of loss. Of wishing to smell anything at all.

Thankfully, for most people with COVID-19, this is a temporary state, but I have heard there could be more than 100,000 of those recovering from this terrible virus whose loss of smell has extended beyond four weeks. I can only hope this is not a permanent state for them, although undoubtedly there is much more about COVID-19 and its lasting impact we have yet to discover.

For me, my situation is permanent, and living in a world with no fragrance is the reality. Yes, things could be much worse, and I realise that, but for me, it has been life-changing.

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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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