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Insight

‘I’m a rehab professional attempting to rehab myself’

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Having contracted COVID-19, which has now become Long COVID, assistant neuropsychologist Alarna continues to battle a number of effects, including fatigue. Here, she shares her reflections on her experience, which has enabled her to gain a greater understanding of her patients’ wish to return to their ‘normal selves’

 

My name is Alarna, and I am an assistant neuropsychologist at a specialist private neuro rehab hospital. I have worked in both supported living and rehabilitation settings for the past 14 years, with various mental health conditions, psychologically rooted illnesses, degenerative diseases, and rare neurological presentations.

Today in discussion with our company director responding to the question of “How are you?” I found that I had reached a new level of understanding for every patient that I had worked with. I found on some level I could identify with their journey as I am attempting to rehab myself. I answered, “I just want to get back to my normal self”.

In December 2020, I tested positive for the coronavirus and was severely unwell for a period of 2-3 weeks. I initially was unaware that what I was experiencing was anything other than being run down or having a common cold. It was not until day four when I woke up feeling as though someone was sitting on my chest, each time I moved I had to take shallow rapid breaths to remain upright and when I coughed it felt as though I was being punched with weighted gloves from all angles.

This was unlike anything I had experienced in my life. Being someone who would be over a cold within 3-4 days (and very ironically did not know how to properly rest) the situation was entirely foreign to me.

Having thankfully recovered some weeks later I began to find myself falling asleep involuntarily every 2-3 hours, I was still breathless on exertion (from walking up a flight of stairs to carrying a handbag) and generally feeling weak. After seeking advice from NHS 111 I was reassured that this was to be expected following a virus and should subside in a week or so.

Throughout this period, I had regular contact with my supervisors at work who were (and still are) extremely supportive, reassuring, and understanding. It was not until several weeks later that we discussed an action plan to help me ease my way back in to work.

This brings me back to today, four months after having COVID-19 and still suffering with chronic fatigue, occasional breathlessness, and migraines. I am unable to complete a full day at work and once I get home at approximately 3:30pm I have no choice but to stop everything and sleep.

Just a key point I would like to throw in here. Fatigue is not the same as being tired!!

I have been burnt out before, I have been exhausted, and I have been tired, but this unexplainable experience is not like any of the aforementioned. It is like an involuntary shut down. People who mean well advise me to just rest or sleep more not realising that I am sleeping up to 14 hours most days and still waking up feeling exhausted.

In my attempts to help the process along I have completely changed my diet, dropped 20lbs of excess fat, complied with resting when my body tells me to, and my energy levels remain poor. Some days it feels as though my speech is unnaturally slow and slurry, though when asking my colleagues, it is not so for the listener. In summary I cannot function without having a 2–3-hour nap in the early afternoon as well as a full night of sleep.

Though there are so many unknowns with this virus, from my experience I have learnt the following:

–       The importance of self-care and rest. Sometimes in the busyness of life what we think we are doing to take care of ourselves really is not self-care.

–       To appreciate the stillness and tranquillity of silence

–       Spending time alone and reflecting is so peaceful.

–       Your health is one of the most important things you have and needs to be a priority. Facts that I knew before but like so many, have taken for granted.

Personally, as a woman of faith I believe that this situation has and will work out for my good in the end, there is always a lesson or a positive to be taken from every experience. This has also fuelled my ever-burning desire to be instrumental in changing lives for the better, starting with my own.

This situation is only temporary but for many of my patients it is not and returning to their former self is a distant memory not to be realised.

I take this opportunity to thank my incredible supervisor/mentor at Renovo Care, Dr Anita Rose, and Margreet, as well as my amazing colleagues Ana, Chris, and Simone for being so caring and supportive during this difficult time.

Rest in peace to all of those who have lost their lives because of this horrible virus, including my dear Grandpa. May we find and be the solution! Stay safe.

Signed

A rehab professional attempting to rehab herself.

Insight

The importance of mindset in rehabilitation

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‘A New Season' watercolour original by Chris Skinner, of West Kent’s Different Strokes Peer Support Group

Having the right mindset can be central to rehabilitation, says stroke survivor Lisa Beaumont, and can equip an individual with the determination to overcome setbacks, find new means of expression, and crucially, to never give up

 

Last month, I highlighted the importance of goal-setting. This month my focus is on the mindset that I believe is fundamental for a successful rehabilitation.

Even though goals and plans to reach them are important, it is crucial to have the right mental attitude to make a successful recovery throughout neurological rehabilitation.

No-one can control the many factors that impact achievements, such as physical injury, global pandemic and persistent rain. 

Nevertheless a successful rehabilitation can be assisted by one thing that each individual has the potential to master – their mindset.

I was unaware pre-stroke that I have a positive, growth mindset instead of a fixed mindset, as described by Dr Carol Dweck in her book, ‘Mindset’. For anyone with a fixed mindset, setbacks will often be felt as a failure.

A ‘growth mindset’, on the other hand, thrives on challenge and sees setbacks as a heartening springboard for growth and for stretching yourself to fulfil your potential by learning and improving.

The platform developed by Neuro ProActive is ideal for underpinning recovery for those who adopt a growth mindset because it provides a means of support post-discharge for the patient to create a long fulfilling life. Dr Dweck emphasises the transformational power of effort and persistence that are the hallmarks of a growth mindset.

I believe that a positive-thinking mindset is needed to overcome the setbacks that disrupt any plan. For example, I haven’t had an opportunity to enjoy countryside walking this summer, yet.

My first intention had been to report this month on outdoor walking on uneven surfaces, but  that report has been thwarted by a minor injury and poor weather conditions. So, how do I respond to these setbacks? I’m putting my effort into my daily physio regime that will improve my posture for walking and bearing my weight evenly on both sides. A minor niggle in my over-worked right knee has repaired sufficiently for me to be able resume my walking on our garden path and on the grass whenever the rain stops.

I might be able to tackle a countryside ramble later in June? I continue to make small gains by doing whatever I can do. I  can view the weather and my injury as an opportunity to improve my stance indoors to prepare myself for outdoor walking.

I co-ordinate a Peer Support Group in West Kent on behalf of Different Strokes, where one of my group’s participants has exemplified a growth mindset in the last year. Chris mirrors many of my disabilities, hemiplegia hemianopia and left-neglect – an extremely limiting combination of conditions.

However, Chris, who was a keen craftswoman prior to her cerebral stroke at 47, took the decision to find a creative past-time that she could undertake capably with one hand. She chose to teach herself watercolour painting from scratch mainly by finding art tutorials on YouTube. One of her watercolour originals has been used to illustrate this article – ‘New Season’ represents her feelings about her devastating cerebral stroke.

By focussing her effort on what she can do, using her functioning right hand, Chris has found a rewarding past-time in watercolour painting, which allows her to escape the daily frustrations that stem from immobility and brings pleasure to others too. 

Chris and I share an interest in creative arts. I write prose and poetry to help me to process what has happened to me. I am very pleased that Neuro ProActive’ s extensive directory of support practitioners includes a section on arts therapy as well as psychotherapists. A growth mindset permits you to find new ways to overcome setbacks through persistence and effort, which is abbreviated in the stroke survivors’ hashtag #nevergiveup.

For more information about Neuro ProActive’s platform, visit www.neuroproactive.com.

Produced with assistance from Paige Gravenell, physio assistant neurorehabkent.com

 

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Inpatient rehab

Redefining rehab: first-of-its kind ward gets set to open

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As the new Castle Hill Hospital rehab ward gets set to open, NR Times speaks to Dr Abayomi Salawu, whose dedication to achieving goals through rehab, and passion for using VR and AR within it, is putting Hull at the forefront of the UK

 

A new NHS rehabilitation centre, which will be the first in the UK to incorporate digital technology and virtual reality into its rehab offering, is set to open its doors. 

The purpose-built ward at Castle Hill Hospital in Hull will have 12 beds and has a range of facilities, including a gym, therapy room and garden area, to enable a comprehensive rehab offering to be delivered. 

It also becomes the first NHS inpatient rehabilitation unit to incorporate digital technology, including virtual and augmented reality into its rehabilitation programme, after Hull hosted the UK’s first successful clinical trial of the GEO robotic gait trainer in 2017.

Patients are expected to move into the new building – the first purpose-built NHS specialist rehabilitation centre across the Humber, Coast and Vale area and neighbouring Lincolnshire – in the coming weeks. 

“This new building brings rehab into modern life. Previously to this, we had our rehab unit as part of the cardiac ward, and more recently in the oncology section, but the limitations of not having a dedication rehab ward became obvious,” says Dr Abayomi Salawu, consultant in rehabilitation medicine at Hull University Teaching Hospitals NHS Trust. 

“Our role in rehabilitation is to help restore function and enhance quality of life for people with complex health needs so that they may go on to live fully and meaningfully, not just exist.

“Normal hospital ward environments aren’t generally suited for this purpose, especially in the case of patients with acquired brain injury or physical and cognitive deficits.

“This new ward will give us the space and the facilities we need to provide specialist rehabilitation input to the highest level, and will also deliver an environment which is more conducive to patient recovery. 

“We have 12 beds, we do need more, but while acute clinical care and public health have both received significant investment for many years, rehabilitation – the third pillar upon which the NHS is built – has sadly lagged behind. 

“So our new rehabilitation ward is a really significant development and definitely a step in the right direction.”

On site during construction (l-r) Madeleine Leetham, senior occupational therapist, Dr Abayomi Salawu, consultant in rehabilitation medicine, and Lisa Cunningham, ward sister

Redefining the traditional definition and practices of rehab is something Dr Salawu has long been committed to, and that extends into the ethos of the Castle Hill ward. 

“We offer complex rehab, if the nurses or staff on any ward think they have a patient who could benefit, then they can come to the new ward,” he says. 

“Life has to be about more than going to the toilet and the whole ethos of being able to conquer that starts by conquering your first environment, which is hospital.

“The approach that has always been taken often makes a patient more poorly, in a way. I’m not underplaying physical injury, but in an NHS hospital, the first thing we do is give someone a bed, even if they walked in. A lot of people become de-conditioned when they are hospitalised, and that’s making patients worse. 

“If you can get a patient as physically fit before surgery, through ‘pre-hab’, then that can make things so much better before and after. With our amputation patients, we do the ‘pre-hab’ work with them and it’s so successful we can then pick them up after surgery as an outpatient. We haven’t used our rehab beds for amputation patients for four or five years now.   

“Another thing in rehab is that there isn’t always a cure, but that doesn’t say you can’t live life well and meaningfully. If, for example, you have a child with Cerebral Palsy, then that condition isn’t going to be reversed – so let’s move on and find out what we can do. How can we enable them to do things and how can we support them in that?”

One key way of engaging patients is through technology, believes Dr Salawu. In addition to the therapy work of the MDT, Dr Salawu is a firm believer in the power of virtual and augmented reality, and is so invested he is even leading the development of new apps.

“I’m a firm advocate and believer in technology, I’m totally sold that this helps rehab. I always look for whatever low hanging fruits we can use, and technology is something we can use. It’s easy, quick, achievable and doesn’t cost a massive amount,” he says. 

“We use virtual reality and augmented reality and we have linked in with Hull University to develop a virtual kitchen app, which patients can interact with virtually and then use their skills to replicate the tasks with their OT in the real-life kitchen. 

“It’s all about practice, practice, practice. That’s what helps recovery and that’s what rehab is about. But practice is boring, for a lot of people rehab isn’t exciting, and that’s the problem. 

“If you want someone with a paralysed limb to practice moving it, if they try a few times and their limb doesn’t respond, even the most motivated patient will give up. But if you translate that into a virtual environment, where you can move your virtual limb in a virtual world, then that might give the opportunity for some recovery – and psychologically can be very important. 

“The more opportunities you give to the patient to practice rehab, so they can maintain or recover their function, the better. That’s why VR works so well, because it’s fun it makes rehab more engaging. 

“That’s where we should be pushing, to empower patients to take over their own rehab. 

“I said to the computer scientists that I hear video games are addictive, could they please create some addictive rehab for my patients so they would become addicted to their practice!

“But we also have a quiet room in the new unit, where patients can use the immersive environment of a VR headset to be calm, de-escalate, become less agitated. We have developed the Brain Recovery Zone app, which is very calming and soothing, and can be used by patients in their own homes as well. 

“Through putting on a headset and being in that calm environment, that can also be very important in rehab.

“For my patients, I’ll say ‘Whatever floats your boat. Try things in rehab, see what you enjoy and what works’ and we’ll see what we can achieve. I want to empower patients to take control of their rehab however they can, and by using these pieces of technology, we’re seeing great results.” 

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Community rehab

‘Recovery from ARBD is the norm, not the exception’

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Reflecting on the recent ‘Recovery and Rehabilitation in The Community: Alcohol Related Brain Injury in Ireland’ event, senior clinical psychologist Dr Nichola Robson shares her analysis for NR Times 

 

It was a pleasure to listen to some of the leading professionals talk about alcohol related brain injury (ARBI), a condition arguably encountered in most areas of clinical practice. 

The theme of ‘hope’ ran throughout the event, which was hosted remotely by Leonard Cheshire, with the central message that recovery from alcohol related brain damage (ARBD) is the norm, not the exception. 

With the right kind of specialist intervention (including the provision of long-term residential placements), an estimated 75 per cent of individuals with ARBD experience a degree of recovery, with complete recovery possible for the remaining 25 per cent.

The day consisted of presentations from experts, interspersed with video anecdotes from service users’ family members and staff from Leonard Cheshire ARBI unit, ending with an interactive discussion between the audience and expert panel members.

 

Dr Jenny Svanberg (consultant clinical psychologist), clinical expert and author in the field, kicked off the day with an excellent summary of the available evidence regarding alcohol and the brain. She provided stark prevalence data and discussed the impact ARBD has on utilisation of non-specialist treatment services. 

She also explained mechanisms through which alcohol damages the brain (both transient and more longstanding effects), the neurological structures affected, and how this maps onto the neuropsychological symptoms and clinical presentation. 

Dr Svanberg outlined inherent diagnostic complexities due to subtle initial impairments often being masked by intoxication and chaotic lifestyle. She also highlighted issues of stigma faced by those with ARBD, and how their difficulties are often at least in part, often attributed to free choice. 

However, she explained that due to the neurological impact of alcohol, specifically on the frontal areas of the brain, and associated cognitive impairment later in progression, reasoning and subsequently choice, is significantly impaired, as is the ability to engage with treatment.  

Next, Professor Ken Wilson (Professor of Old age Psychiatry, Liverpool University), delivered a captivating talk on the clinical characteristics and experience of individuals with a diagnosis of ARBD. He used illustrative excerpts from clinical sessions to demonstrate the how these individuals present in clinical practice. 

He discussed how intact working memory can mean that individuals present plausibly in conversation, however due to short term and longer term (episodic) memory impairment, they experience significant retention and functional difficulties. Due to their cognitive profile these individuals present with reduced insight, a high degree of confabulation and suggestibility, and are therefore exceptionally vulnerable. He discussed the implications of this for assessment of risk and mental capacity. 

Prof. Wilson too emphasised the need to better understand the complexities surrounding this condition, including typical neuropsychological impairments, in order to challenge stigma and support engagement with treatment services (where available). In the absence of any specialist service pathway, individuals with ARBI tend to experience repeated relapse and readmission, with significant human and economic cost.

Following on from Prof. Wilson, Grant Brad (team leader, Glasgow Addiction Services’ ARBD Team) discussed the process of setting up and securing funding for specialist ARBD services. He talked through the service pathway in Glasgow, which covers acute and community settings (including assertive outreach), and offers holistic treatment provided by a specialist multidisciplinary team. 

Grant emphasised the need for a lead care group to support diagnosis and navigation of treatment pathways. He also presented evidence of significant cost savings (primarily due to reduced service utilisations) and reduced mortality associated with the service. He addressed the complexities of assessment and suggested that in absence of formal cognitive testing (contraindicated due to ongoing alcohol use), assessment should involve establishing a timeline of issues, consulting medical records, assessing functional ability through observational methods, assessing and managing risk. 

Grant’s team in the process of developing an audit tool to be piloted in the near future, to evaluate the effectiveness of the treatment provided. He is also keen to see the development of a professional network to facilitate the sharing of good practice. 

Next, Diane Watson (ARBI clinical lead, Leonard Cheshire) provided an overview of the recently opened specialist fourteen bed alcohol related brain injury unit, which offers rehabilitation and residential placements (of up to three years). Diane discussed the service pathway, referral criteria, team configuration, and treatment approaches. She also provided some reflections on the journey so far, detailing substantial successes and some challenges, the latter mainly related to COVID restrictions.  

Dr Anne Campbell (senior lecturer) and Dr Sharon Millen (research Fellow) from Queens University Belfast outlined their mixed method evaluation of the Leonard Cheshire intervention. They aim to measure outcomes relating to psychological wellbeing, functional abilities, relationships, and community participation as well as capturing the lived experience of service users, family members and staff. Preliminary findings suggested an improvement on measures of anxiety, depression, cognition, and function.

The final session was co-chaired by Dr Shield Gilheany (CEO, Alcohol Action Ireland) and Dr Helen McMonagle (Rehabilitation Coordinator, Alcohol Forum), and involved an interactive discussion regarding “the way forward”. Expert panel members included Dr Marie Goss (Consultant Clinical Neuropsychologist), Prof John Ryan (Consultant Hepatologist, Beaumont Hospital), Dr Kieran O’Driscoll (Consultant Psychiatrist, Bloomfield Mental Health Services) and Grant Brand. Discussions centred on the development of specialist treatment pathways (spanning acute and community settings) as well as the use of legislation to protect vulnerable individuals with ARBD.   

To summarise key messages from the day: the impact of ARBD often goes under-recognised and there is a lack of specialist treatment pathways across the UK. Increased education (both public and professional) is needed to improve awareness and understanding of underlying pathology, pattern of impairment, presentation, and treatment needs. 

Dr Nichola Robson

Undoubtedly there is a way to go, but this conference provided a valuable opportunity to showcase innovative service provision models supported by high quality data demonstrating effective outcomes, and in doing so sees us one step closer to meeting complex needs of this population. 

One can only hope that these service provision models (or similar) can eventually be commissioned and rolled out across the UK.

* Written for NR Times by Dr Nichola Robson, senior clinical psychologist (neuropsychology) at Sunderland & Gateshead Community Acquired Brain Injury Service (CABIS), Cumbria, Northumberland, Tyne & Wear NHS Foundation Trust

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