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Providing vital support to people like Jimmy

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NeuroActiveUK was established after the lack of specialist support became clear when Jimmy Gustard was diagnosed with a brain tumour. Founder Debra Mitchell discusses how the charity is providing vital services to brain injury survivors, and how its work is being done as an ongoing tribute to its inspiration.

A charity and community service established to help increase provision for people living with brain injuries is pledging to build its presence even further in memory of the inspiration behind its work, who sadly passed away over the summer.

NeuroActiveUK was established by Debra and Gary Mitchell after seeing how much their brother-in-law Jimmy Gustard struggled to find appropriate support after being diagnosed with an inoperable brain tumour.

Bringing together Debra’s work in providing a meals on wheels service with Gary’s experience in training, in 2017, they created a community facility for people, like Jimmy, living with brain injuries and the effects of stroke to access the support and friendship they needed.

And from that base, a highly-esteemed neurorehabiltation service has grown, with NeuroActiveUK offering a host of therapies including neurophysiotherapy, massage, music therapy, Reiki, independent living support and counselling. Support for carers is also offered.

Sadly, Jimmy passed away in June, aged only 56, but leaves behind the legacy of a much-needed and much-loved service to give support to people at times they need it most.

“Jimmy has been our inspiration from the start, and he will continue to be. We will continue to do everything we do, and hopefully offer even more to even more people, all in Jimmy’s memory,” says Debra.

“Everything we do is because of him and this will be his legacy.

“He was so proud of what we have created. He would stand at the door every day, welcoming people, even when he was very poorly at the end. We’ll continue to make him proud.”

Based in the small community of Ouston, County Durham, but attracting attendees from a 50-mile radius – with a team of volunteer drivers from local business Supportive on-hand to assist – sessions operate from the village community centre three days a week.

“There is a definite gap in support where we are, particularly for younger people, which is why people travel to us from so far away. We saw that when Jimmy was first diagnosed, and we still see it now,” says Debra.

“Jimmy and my sister didn’t know where to turn, or who to turn to, when he found out about his brain tumour, but people in their position now can come to us.

“We’re going from strength to strength, and after becoming an official charity last year, we are adding so much more to our offering all the time. It’s probably easier to say what we don’t offer, as we have a really great portfolio of services now.

“We are doing all of this with the support of our amazing team, who we can’t thank enough.”

Having secured support from local agencies, many referrals come through them, although increasingly people are starting to come to groups of their own accord, having discovered NeuroActiveUK through its growing social media profile.

“The hardest thing is to get in touch, to reach out and say you need some support, but our reputation is growing and people are seeing the difference we’re making to people’s lives and confidence, it’s fantastic we are getting so many self-referrals,” says Debra.

The group’s vital services continued during the national COVID-19 lockdown via Zoom, and its crucial role in feeding the community was allowed to step up when its meals on wheels offering secured funding.

“It was great to still be providing what we knew were such badly needed services during lockdown, though we were so pleased to welcome everyone back,” says Debra.

“The social side is so important in what we do. This is where friendships are made, there is so much laughter. No-one should ever be lonely and go through this alone.

“We have people of all ages coming to us, and it’s one big group of friends. When Jimmy was diagnosed, he was still quite young, and there was such an absence of places for him to find support, which is why we are so keen to encourage younger people to come along.

“NeuroActiveUK is a place for everyone.”

Longer term, the charity hopes to continue to grow its offering, to provide much-needed support and services to many more people.

“We’ve been so lucky to get the support from some local businesses like Karbon Homes and the Barbour Foundation, which is hugely important to a small organisation like ours,” adds Debra.

“We have a specialist neuro physio from Tees Neuro Physiotherapy every week, who is supported by our experienced trainers, and we are hoping to secure funding for more days. We would love to offer it every week, that’s the next ambition. We’re looking at ways to fund that, as we know that would make a huge difference.

“We’ve come such a long way in quite a short period of time, and we’ll keep on going and growing – all in memory of Jimmy.”

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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