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Opinion

Making the open road accessible to all

Car parks aren’t the only places where a lack of space is stopping people with disabilities from getting behind the wheel, writes Ray Lartey, MD of TriLift UK.

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It was encouraging to see the blue badge scheme for disabled parkers being extended last week.

For the first time, people with hidden disabilities such as dementia and anxiety disorders, can qualify for the parking permit scheme, the government has confirmed.

This positive news was tempered by a separate report which suggests councils are not prepared for the increase in blue badge holders.

Research by confused.com shows there are an average of 30 blue badge holders per council-owned parking space; and few local authorities have plans to create more spaces.

If there is indeed an impending shortage of disabled parking bays, then councils should certainly address this – especially if it prevents people with disabilities from getting out and about.

Lack of parking availability is not the only barrier to independence on the road for people with disabilities, however.

Another major hindrance faced is the logistical challenge of bringing mobility scooters and powerchairs along on road journeys.

People who require such equipment must transport it in a vehicle if they are going further afield than their local area.

In most cases, this means putting it in back of a car or van – usually taking up boot space plus all or most of the rear passenger seats. There may also be weight issues to consider, and a complicated process involving ramps and harnesses to get it into the vehicle.

As a result, journeys with family and loved ones in one vehicle are virtually impossible.

This means none of the type of day trips many grandparents, parents and kids would have shared during this recent bank holiday, for example.

In most cars, seating will only be available for the driver and front passenger with a mobility scooter or powerchair on board.

Also, where do the day trip essentials like picnics, wellies, blankets, buckets, spades and foldable chairs go?

At TriLift UK we believe the solution to this widespread problem lies outside of the vehicle.

Our product enables the scooter/powerchair to be simply driven to the rear of the vehicle and coupled to a bracket which is permanently fixed to the device. Via a switch, the device is then raised off the ground and locked securely in place on the rear of the vehicle.

Meanwhile, its small size and low weight make it compatible with most vehicles currently available in the UK, without affecting the safe or legal operation of the vehicle.

It can also be transferred should the user change their vehicle; and can be used with any size of scooter or powerchair.

If TriLift will not be used for a prolonged period, it can also be easily removed from the vehicle for storage.

Users no longer have to rely on their partners or children to go wherever they want. But also, they can take their grandchildren or other family members with them, because of the extra room in their vehicle.

As I’ve seen at close-hand in the years since I brought this innovation to the UK from the US, this clever piece of engineering can truly give individuals total independence on the open road.

Ray Lartey is managing director of TriLift UK and has worked in the mobility industry for more than 20 years. TriLift UK is the Sole Distributor of this worldwide patent product in the UK and Europe. It has Mobility outlets and technicians located across the country. Interested parties can also book a free no obligation demonstration at home. For more information visit www.trilift.co.uk or call 0800 246 5901.

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News

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

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Opinion

Hands on to hands off

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Five brain injury professionals spanning dietetics, case management, physiotherapy and speech and language therapy share what they’ve learnt from to shift to virtual therapy. 

At the start of the pandemic, many statutory rehab services were redeployed, and some independent therapy teams closed or therapists moved back into frontline work within the NHS and community.

A group of private therapists in the North West of England started keeping in touch on social media and in weekly group support sessions to share their fears and concerns, and identify the strengths that helped them survive in such challenging times.

They shared a desire to maintain a therapeutic relationship and meaningful rehab for their patients, all living with complex neurological conditions, while delivering remote therapy sessions online. This is what they – a dietitian, a speech and language therapist, two physiotherapists and a case manager with an occupational therapy background – learnt during that time.

Don’t Panic

As therapists and health care practitioners, our hands are often our primary tool; we use them to direct, feel, inform, instruct, measure. The inability to see our patients face to face took away these vital tools.

We knew we had to adopt a positive attitude of creativity, innovation, and practicality, and decided to continue as much as was practically possible, albeit remotely.

The pandemic thrust us into a new world where we soon learnt that we have a wide range of diverse skills beyond the use of our hands – as educators, problem-solvers, movement and task analysts, communication specialists and counsellors.

For some of us, the beginning of the COVID-19 pandemic saw a reduction in caseload by up to half, which affected morale as we tried to manage personal and professional stress and anxiety. For others, our case load dramatically increased as we maintained routine and aimed to prevent safety concerns around swallowing and malnutrition.

Working remotely by virtual platforms has required therapists to re-evaluate their roles and responsibilities and redesign pathways of rehab, all without a guidebook and almost overnight.

Sharing the challenges we were facing enabled us to embrace the new era of therapy provision, ensuring that a calm, professional and positive approach paved the way as we guided our teams and patients through what would become months of change.

Embrace core values

As we continued to meet regularly, we began to understand we were united by our shared views and values regarding duty of care, therapeutic relationship and safe and ethical practice.

Our common commitment was our duty of care to providing continued therapy input to our patients. We could develop novel approaches to practice quickly to reduce negative impacts on clients’ physical and mental wellbeing.

As independent health providers, we were able to rapidly try out new service delivery techniques and begin to rebuild a new virtual therapist identity to ensure ongoing rehab, delivered in a safe and realistic format.

One of the key factors enabling our speedy response was not being tied to a specific platform. Recognising the frustrations technologies can cause, however, administrative team members assisted families to ensure an effective technology connection to avoid this impacting on the therapeutic relationship.

The freedom of being at the helm of smaller, independent practices placed us in a position to respond quickly and invest time and resources into developing a new way of working, but this was not without financial risks. Our weekly group meetings helped identify the need for a supportive framework for professional staff to share and explore what we meant by ethical and safe practice.

Be innovative, creative and dynamic

Therapy is not a desk job, it’s active and engaged. Teams invested time working out the positioning of devices and how to use selfie sticks to ensure the optimum viewing angle.

We taught relatives and support workers techniques and assessment tools separately to the patient to ensure that they understood their responsibilities in the session. During physiotherapy, people reportedly became used to observing themselves on the video link, so they could see what the therapist meant when they were talking about making postural changes.

In dietetics, the continued use of eHealth communication apps maintained frequent dietetic communication, giving real-time feedback, accountability and encouraging confidence, control and mindful eating.

People working on developing their speech sounds or breath support had automatic feedback as they could see themselves on screen and could work to imitate lip patterns and breathing techniques as modelled by the speech and language therapist.

Our aim was to safely maintain and progress rehab goals while encouraging routine, structure and preventing development of new issues. Some have surpassed expectations and are continuing to make significant gains and progress. This in part is due to the adaptability that online delivery presents.

During a face to face session, we often have a fixed time period. However, through virtual sessions, we can be more adaptable to personal wants/needs, breaking sessions up into ‘bitesize’ chunks. This can assist people with limited attention or difficulty processing and is helpful in fatigue management.

Nevertheless, online therapy does not work for everyone, and many people and their families miss face to face input and support. Some people find multi-tasking prohibitive, some can find technology intimidating. Others find it difficult to follow the conversation, particularly where they are more dependent on non-verbal cues, or are challenged attentionally when people speak over each other.

We need to consider how we can embed online therapy in our routine practice; for who online therapy presents opportunity and for who it may create challenges.

Assessment of new clients was restricted. Many of our clients pose non-obvious difficulties. Assessing how a person interacts with their environment can be difficult, and it can be difficult to form that initial relationship which is key to good neurorehab.

Bridging a gap

During the pandemic, many people reached out to connect with us remotely. For others, the services they needed altered. We have seen an increase in dietetic referrals, perhaps due to reduced gym, and community healthcare provision.

The use of eHealth and virtual therapy has meant we were able to bridge the gap, ensuring minimal disruption to rehab through remote transfer of therapy skills, including educating and training other household members and support staff.

This training is a key part of our roles and online support, and voiceover Power Points and videos of ourselves disseminating information have been important. Attending a session virtually can empower both the person, the family, and their support teams. It can provide a positive forum to educate staff and monitor learning across the whole team.

Some support staff and families reported feeling more empowered during lockdown as they had clear connections between the therapy input and the person.  We were able to bridge a gap for those who were able and willing to engage and found a new tool to add to our repertoire.

Forward-thinking and planning

As we move out of lockdown, our teams have reflected that remote therapy via video link is possible, but isn’t always preferable. The challenge will be to develop a hybrid system that puts the patient at the centre of their rehab.

Remote therapy via video link happened in a unique bubble and in response to a crisis and it is unclear at this stage how these external factors impacted on the success or otherwise of virtual rehab.

Used well, the barriers of geography and travel could enable specialist therapists to support local therapists to provide effective rehab for those with complex conditions. There is also more opportunity for therapists to benefit from ease of access to international perspectives and training resources that are rapidly developing online.

As we are returning to increasing direct engagement, we are facing the new challenge of working in and communicating in PPE, which introduces challenges in establishing and sustaining a therapeutic relationship.

Embracing change

This period has been challenges for therapists. However, we have learnt together, along with the people we support and their families, and want to make sure these learnings aren’t lost.

Virtual therapy spaces present an opportunity for us to provide services across longer distances and in diverse and flexible ways, that, for some, may enhance progress toward their goals. For the foreseeable future, while therapy services are resuming face to face intervention, there will likely be a continuation of some remote methods.

Physical distancing and personal protective equipment will likely present new learning for us, and requires ongoing reflexive practice as we continue to grapple with the shift from ‘hands on’ to ‘hands off’ service delivery.

We have seen that people are increasingly deteriorating; both physically and mentally, and the novelty of remote therapy becomes less effective as it becomes increasingly obvious that we are hands-on for a reason. As humans we need the subtle combination of touch, communication, concern, community, movement and freedom to keep us well.

This article was collectively written by:

  • Jackie Dean, case manager at n-able Services Ltd
  • Ann Pimm, physiotherapist at Summerseat Physiotherapy
  • Hayley Power, speech and language therapist at A.T Therapy
  • Sian Riley, dietitian at Red Pepper Nutrition
  • Susan Pattison, physiotherapist at SP Therapy Services

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Opinion

‘Lockdown set me back so much, I fear the consequences of a second wave’

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COVID-19 has presented many challenges for brain injury patients, with the cancellation of groups and appointments meaning a pause in their rehabilitation. Here, Paul shares his story of how his experience of the past few months has left him dreading the impending ‘second wave’.

I sustained a brain injury just over 18 months ago now. It was in circumstances many people describe as a ‘freak injury’ but I really hate that description, as I’m constantly well aware I probably now seem like a freak, thanks to my condition. I was decorating at home, something I never do, but we were trying to save some money so I thought I’d give it a go. I was standing on some ladders which were a bit wobbly, but they seemed fine for a DIY novice such as myself.

The next thing I knew, I had woken up in hospital, my partner at my bedside looking distraught. Apparently the ladders had tipped over and I was lying on the floor when my partner got home, unconscious. Seemingly I had been there for some time, which had worsened the impact of the fall itself.

I was told I had suffered a brain injury, which went on to manifest itself in a number of ways. I forget things all the time. I have a much shorter temper than I used to. I dribble sometimes, which means I now never eat or drink outside my own home. It has changed my life in many ways, none of them good.

But what can you do other than get on with it? I resolved to live my life the best I could and just get on with things, although the early days were pretty tough.

I was angry with my partner – why couldn’t we have just paid for a decorator? Not that it was his fault at all, but I lashed out at everyone with my vicious tongue. But being the amazing person he is, he supported me, comforted me, and proved to be my saviour and lifeline.

He found local groups for me to attend. He found forums online for me to visit. He connected with other people with brain injuries, who could understand my situation much better than he could, which I stress was not for the want of trying.

Things began to look up. I went to a fantastic group run by volunteers who were such a comfort. There weren’t many people there but everyone who attended was so kind, sympathetic (not in a patronising way) and understood.

They got it, and that’s all I wanted. They knew I didn’t want to be this short-tempered, forgetful person, but tolerated me for who I was. For the first time since the day I woke up in hospital and hated the world, I was feeling a lot better.

I remember watching the news in maybe January this year and watching what was happening in Wuhan in China. This dreadful COVID-19 was spreading like wildfire, people were having to stay at home for weeks on end in isolation, it was shocking to see. ‘I wouldn’t be able to cope with that,’ I thought. But barely three months later, this became my reality.

Being stuck at home all day, every day, was torturous. My mental health began to suffer badly and I became very angry and resentful at the same four walls being my everyday surroundings. The group I had found, where at long last I felt in the company of people who understood me, was cancelled until further notice.

That was especially tough. They did try to organise something though Zoom at one point, but I hated these videoconferences – I could hear my partner on them most days doing work, and the noise echoed around my head, ringing in my ears and making my whole brain feeling as if it was going to explode. I chose to end contact with people and resolved to sit at home, in the very house which had been so important to decorate it had ruined my life. I just hated myself and everything around me.

With the restrictions being lifted to some degree, I have now begun to go out of the house a little. I have been going for walks. I got my hair cut. I want to rebuild the confidence I have lost over the past few months so I can attend my group again once it resumes.

I know that probably sounds absurd as the people there were so lovely, but I know I’m not the person I was even those few months ago. I’m very anxious and highly self-conscious – they feel like traits which have come suddenly but have burrowed deep. But every day I’ll keep on going out, even just round the streets where I live for a walk, and trying to overcome the latest challenges to be sent my way.

However, permanently in the back of my mind is the thought of another lockdown once the second wave arrives. That adds to my anxiety every single day. What will I do if we are again told we can’t leave the house? How will I cope? I’m not sure I will.

I’m not really sure how I got through lockdown the last time, where days and nights merged into one and any concept of getting dressed went out of the window. I have an appointment at the hospital in a few weeks from now, but who knows what will happen between now and then.

The rate of infection is again rising every single day, and I fear we are heading for another full lockdown. The thought of that is too much to take sometimes, but the huge worry is if that was to become reality.”

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