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Community rehab

Using art to help manage the life long effects of a brain injury

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Natalie Mackenzie, of BIS Services, has worked with ‘James’ since 2002. In fact, he was one of her earlier clients in her career. She is immensely proud of the challenges he has overcome; not all of the effects of the accident have been surmounted, but none the less he has exceeded many expectations of medical professionals, with a will of iron and an exceptional talent that is finally being acknowledged. Here she shares the experience.

James is not defined by his brain injury, but his experiences and the challenges of his TBI have moulded his work and the individual we now see. As we are all aware, living with a severe TBI is a lifelong journey, and I still support Jim in the community, and have continued to do so whilst he has travelled around the world, through the now ‘normal’ virtual rehabilitation.

I have watched his art bring meaning and focus to his daily life, encouraging a motivation and structure that is always needed for individuals like James managing their cognition. Although there remain issues with some areas of function, James has learnt, consolidated and implemented a toolbox of strategies that support him to pursue his passion and bring joy to others.

It has been a pleasure to work with someone as driven as James, and I have seen him take a turbulent journey through his recovery, which I am sure many professionals in the field can relate with.

His need for increased rehabilitation through life challenges is always available and those of us that work with him remain committed to supporting him as he continues to develop his artwork further, wherever that may take him. There may even be a few of you reading this today who have been part of his journey.

Some of his artwork now hangs proudly in the BIS Services office with room for more to come.

Here in his own words, is his story.

James Cyril Gardiner was born in Woking, Surrey in 1967. Parents Margaret, a cleaner, and ‘Jock’, a hospital porter, subsequently brought him up in the village of Englefield Green, Surrey.

Despite a troubled and turbulent early life James did well in most subjects at school, excelling at Art and English. His O-level mark in Art which gave him grade A was, according to his teacher at the time, ‘the highest recorded in the borough for over 10 years’.

After gaining an A-level grade B at the local sixth form college and being offered a place at Chelsea School of Art, he was faced with a difficult choice. Either go away to London to develop his Art education, or stay and work in order to look after his older, autistic brother, following his parents’ divorce and subsequent loss of the family home.

He chose the latter, and so began the next 17 years of warehouse, stock control, purchasing and accounting roles. Beginning at a fledgling Thorpe Park, and ending at China House on Piccadilly (now ‘The Wolseley’) via 7 years at the uber-trendy Halkin Hotel in Belgravia – his aptitude for detail, mathematical exactitude and forecasting meant he had developed a successful career, although a world away from anything exploiting his early artistic talent.

Maybe this was shown in other ways, however, as he was also developing a sideline career as a talented songwriter and guitarist in indie pop, with a modicum of success, but with great hopes for the future.

Life was good, and was only going to get better. Now living in London’s Olympia, with a steady, reasonable income, an active social life, and daily gym sessions meaning any excesses from the weekend were negated, all meant life was pretty much as good as it gets for an early thirty something man in the capital…

Then, one night in early September 2001, everything changed.

That evening he visited a friends’ nightclub- the infamous ‘Uncle Bob’s Wedding Reception’- to witness the first London performance of a mutual friend’s band, The Darkness.

Earlier that day, England had beaten Germany 5-1 during the qualifying stages of the 2002 World Cup, and it was a hot, heady, boozy and celebratory evening, which spilled over into the early hours of the following morning.

Eventually, he and a friend were driving home (the pal being the sober driver) when, at about 4.30 am, ‘joyriders’ were ironically the reason for James eventually being painfully aware of the word ‘Anhedonia’.

Teenage car thieves, being pursued by the Police, were travelling on the wrong side of the road with lights off at a speed of over 80mph. The head-on collision saw James’ car being bounced off some railings and then into a traffic light, therefore involving three collisions with devastating results.

The crushed pelvis, broken arm bones, eye damage and two collapsed lungs were the immediate, obvious results, a GCS of 3 on admission to hospital meaning the medical team were less than optimistic as regards the chances of survival.

Any Traumatic Brain Injury was not obvious, even after being eventually roused from the 12 day induced coma, and the long, slow process of rehabilitation commencing.

After over a year of appointments, hard physical work and bewilderment, other professionals ‘in the trade’ suggested that there was possibly another subtle, yet massively important result of the accident which would have a permanent effect on his cognition, mood and subsequent PTSD.

After eventually accepting that the previous working life was now gone forever, James was happy to see that although his hemiparesis meant his guitar playing was also a thing of the past, he could still draw – a long dormant avenue of expression was gleefully available to be explored again.

Although fatigue, scar tissue, recurring eye issues (a lens replacement and detached retina being just two) all hampered progress, the relief from the Anhedonia -with which he was now all-too familiar – was only felt when successfully completing a drawing.

The next five years were spent exploring differing media, instruction, approaches, ideas and styles, and probably meant the Foundation Course and Degree missed in the Eighties was now complete. A particular favourite was the drawing of cities around the world,

Though London was a readily available source of material. The idea of just replicating what was there in front of the artist always seemed unsatisfying, however, ‘I had done many still life works during my teens. I knew the ability to reproduce things I see accurately was still intact… but there had to be something more to be explored…’

Eventually a theme was developing in the artworks – one of recording the space occupied by people, questioning when a person REALLY exists.

‘ I think this came about as a result of thinking about my friends and family coming to visit me in hospital, when I was comatose.I was there, lying in that bed, alive. But I wasn’t there. I was occupying the space. We had an experience there, together. In that space, at the same time.

‘But, although my body was there, my personality wasn’t. And I have no memory of that time.’ This idea soon started seeping through into the artworks. Thin, black outlines of people were drawn ‘over’ a background of monochrome cityscapes, sometimes with a minimum of primary colour to provide relief.

‘I would often sit in a place, drawing the background of the city structures. And, during this time, I would take many, many pictures with my iPhone of the passers-by in my view. I would therefore record the people that had also been in that space with me, during that time.

‘Later, I would choose the stances and shapes that appealed to me from the photos, and make a composition that I felt recorded that time I was there. But all I recorded were the outside shapes of the people. Not really them, themselves , with their personalities, and thoughts and feelings…’.

The U.K. lockdown during 2020 meant the artworks suddenly had an increased level of pertinence, and this prompted a series of new works entitled ‘The City Missing The People’, showing London landmarks – this time drawn in colour – empty but with the now familiar trademark ‘Outline people’ drawn with white lines, suggesting an almost ghostly feel…

‘I wanted to show the city with a personality, but mourning the sudden absence of the multitudes of people that normally give the city it’s life, it’s feeling… it’s personality… as if it was therefore missing that part of itself’.

These drawings were included within BBC Radio London’s ‘Make A Difference’ feature, the proceeds from selling online and original purchases being donated to ‘The Big Issue’.

This work has prompted further developments – ‘ I liked the idea of looking further back – other people have also been in the same space, perhaps themselves looking back – perhaps looking forward, imagining us – a future they could not comprehend. But they WERE there then. They DID occupy that space…’

So another series of drawings has been made, redoing the ‘The City Missing The People’ works, but with the addition of Edwardian and Victorian characters posing, as if for the camera, in those same spaces, the juxtaposition of the white outline contemporary figures with the more solid, yet partially drawn grey antique poses raising all kinds of questions…

‘I look forward to continuing to develop this – and other -styles. I think I am a person with a chequered history first – and an artist second. Maybe the injury to my brain has enabled me to see things in a different way. Maybe I would never have thrown myself into Art again – there’s just no way of knowing. I hope there is still enough of the pre-accident ‘me’ to inform my Art accordingly, as the last thing I want to create is needy, ‘damaged’ pieces asking for sympathy. I hope I am now exploiting the unique approach my experience has given me…’

James’ work can be viewed and purchased on www.jamescyrilgardiner.com

Community rehab

‘SLT took on even greater importance during lockdown’

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“It’s a balance between reducing contact to keep people safe, and maintaining contact to keep people safe."

Through community speech and language therapy continuing even during the height of lockdown, many patients received a “massive boost” from the progress being made in regaining or maintaining their communication and swallowing abilities.

While many therapies were stopped or conducted remotely, speech and language therapy (SLT) continued in-person throughout the pandemic, supporting people in their recovery from brain injury or stroke, as well as working with those with progressive neurological conditions.

“With there being a complete hold on a lot of NHS therapy during the first lockdown, speech and language therapy was very important to so many people, so to be able to progress in that area was a massive boost during a difficult time,” says speech and language therapist Jennifer Benson.

“For many patients I saw, they felt that there was so much focus on COVID they had been forgotten – but to have a voice is such a fundamental part of life, and for a lot of patients, particularly those with progressive conditions, it can’t wait.

“It’s a privilege to be able to support people with this, but particularly to be there for them during the most trying times.”

The continued intervention of SLT during lockdown helped many patients significantly – but for therapists, their role was frequently, and unexpectedly, expanded with the cancellation of many other community services.

“We were finding we’d be going to people’s houses and our role was broadening, we’d need a double appointment to help get through the other issues they had and trying to offer support,” says Jennifer, who worked in both private and NHS roles across Yorkshire and Lincolnshire during the pandemic.

“As speech and language therapists, we are very clear on our role boundaries, and we’re very keen to work with our MDT colleagues, but during those times we had to become used to dealing with things like recognising when a person needed end of life care, and supporting families when GPs weren’t coming out to see them.

Jennifer Benson – speech and language therapist

“One case that really stands out was one gentleman with some early signs of Parkinson’s, he’d had a telephone appointment with a neurologist but nothing else.

“He’d then had a repeat prescription from his GP with some Parkinson’s medication on it. He queried it, saying this isn’t mine, but then got an email telling him he had Parkinson’s disease. He and his wife were in total shock.

“In ordinary times, there would be Parkinson’s nurses visiting to pick up on that, but in the absence of face to face appointments, SLTs were in a position of needing to offer more support and information about Parkinson’s in general. We know our stuff and we’re good at explaining things simply to people, so it was a natural extension of our skills.”

Against a constantly-changing situation during the pandemic, assessing the need for visits against the safety factor of not doing so, was a fine balance.

“All through the pandemic, face to face appointments have been risk assessed, and SLTs all over the country have risen to the challenge of using teletherapy when this has been the safer option,” says Jennifer.

“It’s a balance between reducing contact to keep people safe, and maintaining contact to keep people safe.

“Very often our swallowing assessments and interventions would be helping to prevent a hospital admission, so we were also doing our bit to keep people at home and prevent more strain on the hospital system, and keeping them out of the way of potentially catching COVID in hospital too.”

Jennifer, who has more than 20 years’ experience in the field, continued her appointments using PPE for the benefit of the patients who needed her.

“I became used to wearing a surgical face mask, plastic pinny and gloves, even though the mask made communication so much more difficult. I had a boot full of this equipment and many a day had to battle the North Sea wind while putting my pinny on!,” Jennifer recalls.

“But it was all such an unknown, and people were needing to be seen more than ever, very often I was all they had, so you just get on with it.

“It was only when I got my first vaccine that I realised what a relief it was. Working in the community, you rely on people reporting symptoms and of course many cases are asymptomatic. You have to hope your PPE really does keep you and everyone else safe.

“There were care homes I was in which had outbreaks two days later, and you maybe do think about your own safety, but I think it’s only on reflection you realise how anxiety-provoking it really was.

“I’m very pleased I have so many years of experience, I’ve seen a lot of things, so that helped me to get through that time – for those who were new to it, it must have been very hard.”

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Community rehab

Music group launched to support BAME community

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Leicester Musical Memory Box is launching its online music project Geet Sangeet

A music group established to support people living with dementia, memory loss and brain injury has received funding to launch an online project for the South Asian and BAME community.

Leicester Musical Memory Box (LMMBox) was founded in July 2018, and since that time has grown from one group in the city to six, providing interactive music sessions for people of all ages and backgrounds, including a group specific to the South Asian community.

The group – which has two staff members who are fluent in Gujarati, Hindi, Punjabi and Urdu – aims to provide the local community with a supportive network and a safe space to explore the unique challenges that a brain injury may bring to individuals, as well as their families and carers.

The new online music project is named ‘Geet Sangeet’ – translated as ‘Songs Sung Together’ – and will incorporate music and cultural references specific to the South Asian community, led by group leader Beena Masand from LMMBox.

Each session will begin with gentle exercises to warm up the body and brain, followed by singing and discussion about various music, songs, and media.

Attendees will also receive their own ‘musical memory box’ in a bag to help increase the interactivity of the sessions.

The project has received funding from the new Local Connections Fund, and is in collaboration with Headway Leicester.

Music has proven benefits for people with memory problems or a brain injury, including enabling people to connect with past experience and enabling freedom of expression, confidence and independence.

Attendance at the groups also helps to improve mood and reduce feelings of social isolation.

“We know we are providing a vital service to our members and receive enquiries regularly,” says Kyle Newman, group leader and co-director of LMMBox.

“In spite of the lockdown, we are thrilled to be able to once again provide a culturally specific group for the South Asian community.

“We also know that the group leader needs to come from that community and have the music and cultural knowledge to be able to engage participants effectively.”

“We are delighted to collaborate with LMMBox and reach out to more people across Leicester who have been affected by brain injury,” adds Mary Goulty, service manager at Headway Leicester.

“There is a clear need for a support service within the BAME community and that’s why we launched our BAME group last year, which is providing a vital lifeline to brain injury survivors we support and their families.”

To contact LMMBox, visit www.leicestermusicalmemorybox.co.uk

For support with brain injury in the Leicester community, visit www.headwayleicester.org.uk.

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Community rehab

‘Huge positive progress – but change still needs to happen’

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Susan Pattison - founder of SP Therapy Services

Having set up in private practice 22 years ago, SP Therapy Services has watched a burgeoning sector grow around it. Here, founder Susan Pattison shares her views on its progress, and why community rehab has an ever-increasing role to play.

“We’re no longer a child who is complaining without a strong voice – we’ve grown up into the teenager who can articulate themselves.”

Susan Pattison’s analogy of the specialist neuro sector is an interesting one.

From setting up in business in the very early days of development for private practice 22 years ago, she has watched a thriving industry grow up around her.

“When I first set up in business, it was said many times I was like gold dust,” she recalls.

“Setting up on your own wasn’t common at all, particularly as a neurophysiotherapist. At that time, physio was about sprained ankles, not complex brain injury cases.

“When I was in my previous job, I was discharging people home to nothing, which is why I wanted to set up in business. I never set out to be a business woman, I just wanted to do right by my patients.

“I still remember my husband and family shaking their heads and saying I had six months to make a go of it, it was not widely done at all. It was a risk.”

As a trailblazer for private practitioners, Susan has gone on to build a thriving neurological physiotherapy and occupational therapy business, SP Therapy Services.

From its base in Bury, its nine-strong team covers Cheshire, Lancashire, Greater Manchester, South and West Yorkshire, supporting patients in both clinical and home settings.

“Now, it feels like my business is just a little goldfish in a huge pond, it’s a long way from the early days but these are actually really exciting times,” says Susan.

“We have grown up as a community and are making a lot of noise in the right ways. We have UKABIF banging on Parliament’s doors, helping to make neurorehab a hot topic, we’ve got BABICM setting standards for brain injury case managers, we’ve got Headway with their list of solicitors – and everyone is working together to move forward.

“I think the private sector has now come up and is a beacon of light for the NHS, we respond to the need and are there in support.

“A huge amount has changed over the past 22 years, and it is still changing. We have to continue to change, to work hard and progress together.”

And that need for ongoing change is something Susan feels passionately about – particularly the need for investment in community rehab, to support the work of the NHS post-discharge.

“If we are going to invest in saving a life, then we need to ensure a quality of life for that person. These people need rehab to have that,” she says.

“We can’t keep front-ending and need to invest in the longer-term care once they are discharged into the community. Rehabilitation has to happen in people’s communities as that’s where they live their lives.

“But investment in community rehab can’t be seen as a luxury, or something that is nice to have. It’s absolutely critical to people and families being allowed to rebuild their lives.

“With the impact of the pandemic, hospital waiting lists are going through the roof, and that is going to be pushed out into the community.

“But with such a strong private sector now, which has grown from the child into the teenager, as I put it, the support is there, it’s in place. And we’ll keep being that beacon for community rehab, continuing to call for the investment is needs.”

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