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Notes from Nanjing

NR Times’ writer Andrew Mernin attended the largest neuro-rehab event in the Asia Oceania region recently and made a few notes along the way

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In a packed auditorium not far from the Yangtze River, hundreds of delegates are on their feet clapping vigorously. They have just discovered that one of their national heroes has been sitting among them undetected all evening.

Xia Boya is China’s rehabilitation poster boy (or man, since he’s now 70). In his twenties during an attempt to scale Everest, his team hit bad weather just 250 metres from the summit. Xia gave his sleeping bag to a teammate who was struggling to survive. But his kindness came with a heavy cost – frostbite and the subsequent amputation of both his legs. Yet 43 years after that failed mission, he finally achieved his dream of climbing the world’s most unforgiving peak.

The televised feat from last year was replayed on big screens at the 2019 Asia-Oceania Congress for Neurorehabilitation in Nanjing – China’s ancient capital. The sight of Xia dragging himself up the final few metres made for an emotional opening to the conference. Applause broke out when an unassuming pensioner in a tracksuit stood up in the crowd and waved.

Xia Boya himself was here for this confluence of neuro-rehab. Not a single chair is empty in this grand hall. Scores of people standing up are lining the outskirts of the room. Most striking, however, is the fact that the vast majority of local delegates are in their late teens or twenties. This is perhaps indicative of China’s accelerated interest in rehabilitation.

A surge of students and young professionals shooting for careers related to severe injury and neurological conditions is emerging. Partly this is driven by soaring demand. A landmark paper on rehabilitative medicine in 2009 reported that China had a personnel gap of 15,000 rehabilitative specialists and 28,000 therapists. While no update on this is available,  trends suggest that the need for more rehab specialists is intensifying.

By 2050 it is expected that the proportion of  China’s population which is 60+ will have risen from 15.2 per cent in 2015 to 36.5 per cent, putting pressure on many areas of healthcare. Around 2.5 million people in China suffer strokes every year, with 70 to 80 per cent losing the ability to perform routine activities and requiring care. A 2017 paper reports that only 11.5 per cent of patients undergo some form of rehabilitation within the first week of their stroke; 42.4 per cent do not receive any rehabilitation.

Meanwhile, the Chinese Journal of Traumatology reports an estimated 3m to 4m incidences of traumatic brain injury every year. The sheer number of neurological disease cases in a population of 1.3bn also creates massive demand for newly qualified rehabilitation workers. The number of Parkinson’s cases, for example, is expected to hit 5m in China by 2030, according to the World Federation of Neurorehabilitation.

Also driving heightened interest in neuro-rehab careers is the rapid reform of China’s healthcare system generally. Over the last decade, the Chinese government has been in the process of expanding social health insurance, reforming public hospitals and strengthening primary care. In 2016 it announced the ‘Healthy China 2030 blueprint’ – a plan to provide universal health security to every citizen by 2030.

China’s is an insurance based system whereby almost a third of citizen health costs are paid for by the individual. The aim is to reduce this to 25 per cent by 2030. Investment which helps to improve, and better connect, services, is being ramped up, while key goals such as earlier detection of diseases and increasing life expectancy have been put in place. All of which may aid the development of rehabilitation services.

The private sector – including technology developers – may have a lead role to play in this. The exhibition floor at the congress is themed around ‘high tech integrated with neurorehabilitation’. Exoskeletons, virtual reality systems and robotics are all represented. The dominant tech forces, by some distance, however, are functional electronic stimulation (FES) and transcranial magnetic stimulation (TMS) therapy machines.

Almost every firm’s products are made in China and marketed entirely to the Chinese market. None I meet are targeting the European market, with enough demand in their homeland to fuel steep growth curves. The private sector’s role is also evident in hospital development. During the week-long conference, eight of the world’s most eminent neuro-rehab practitioners are shown around a new children’s rehab hospital in Nanjing.

They arrive to a heroes’ welcome from a small army of hospital staff, photographers and management flanking the lobby. Despite my repeated protestations that I’m merely a lowly hack there to make up the numbers, I too am lauded as a globally pioneering doctor in neuro-rehab. I autograph a huge sign in reception, then I’m presented with a doctor’s coat and ushered into numerous photo opportunities.

The chief clinician at one of India’s largest rehabilitation hospitals leans into me and whispers: “I spent 16 years at medical school, and you’ve become a doctor in 10 minutes”. My fraud continues as we move from ward to ward, with awaiting staff clapping us from one room to the next. I adopt the classic ‘doctor-walking-with-intentwith-arms-behind-the-back’ approach gleaned from Casualty and ER.

We are then taken into a large boardroom. Hospital staff file in and stand around the perimeter, while we experts take up seats at the table. After a presentation about the hospital, from its enigmatic founder who was inspired to set it up by his disabled brother, the spotlight turns to us. “How would you recommend that we make a success of this new hospital?”

I frantically scribble ideas on a notepad, while my fellow luminaries from the US, Switzerland and Indonesia thankfully step forward to speak up. The microphone edges agonisingly closer to me but my sage advice is ultimately left unsaid.

“Good luck for the future,” I write, while my peers feverishly pen relative essays in hospital management on a questionnaire we’ve all  been handed.

Back at the conference, I meet a German rehabilitation medicine physician currently involved in setting up a hospital in Shanghai. He explains an interesting distinction between European and Chinese rehab. “We’re building a rehab centre in the German tradition, mainly focusing on stroke,” he says.

“What’s amazing is that we’ll do the western approach to rehab each day, and then they’ll go off and do traditional Chinese medicine activities.”

He’s not convinced that all of it works towards recovery, but is open minded and admits that some herbal treatments do show promise. “Of course herbs work, its chemistry, but the rest depends on the frontal lobe. I call it the Hollywood machine. It can give you anything.”

I also meet Benny, leading a Mongolian delegation of rehab professionals. There, wrestling and horse-riding accidents are among the biggest causes of brain injury, he tells me.

A gaping shortfall in the number of rehabilitation doctors makes brain injury care a huge challenge – especially in the vast country’s rural areas with sparse hospital coverage. But interest in neuro-rehab is growing. It will soon host its third annual congress on the field and its development is gathering pace. The wider Asia-Oceania region, like most of the rest of the world, is typified by falling mortality rates but increasing morbidity and disability levels.

Dealing with this requires new approaches utilising improved technology, knowledge, research-based evidence and services. All of these topics are covered in-depth in the conference programme in well attended talks. The appetite among Chinese delegates to learn from rehab professionals in other parts of the world is evident in every session. Momentum certainly seems to be building in China and that can only be a good thing for neuro-rehab’s global progress.

 

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Insight

How mental health impacts physical rehabilitation

Breakthrough Case Management discuss how a client’s physical rehabilitation is inextricably linked with their mental wellbeing

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Mental health issues are all too common, with the numbers of people impacted by mental ill health rising significantly, particularly as the effects of the pandemic continue to be realised. 

And while the true extent of such problems is probably yet to be fully understood, research is continually uncovering the power of the connection between the body and mind. 

For those of us working with individuals who have experienced a life changing injury, the impact of mental health on physical rehabilitation is clear to see – in both positive and negative ways. 

With around one in four people in the UK experiencing a mental health problem every year, it’s possible that someone living with life-changing injury faced mental health challenges before their accident – which only amplifies the situation they now face.  

But even if someone has no pre-existing mental health concerns, such injury will most probably adversely affect their wellbeing. 

This can manifest in feelings of overwhelming distress, confusion, anger, fear, hopelessness, anxiety and depression or the development of phobias, panic disorder, catastrophisation or post-traumatic stress disorder (PTSD).

Awareness of mental health and its implications is vital knowledge for any case manager. Because of the close connection between the health of the body and mind, and the potential for mental struggles to impact on physical recovery, mental health support is an important element of nearly all our rehabilitation programmes.

From a Breakthrough Case Management perspective, our rehabilitation programmes will almost always bring in a qualified psychologist. We understand the impact mental turmoil can have on a client, and we work with a team of psychologists who we match with a client depending on their requirements and their injury or situation.

Mental health support should always be considered as part of a holistic approach to rehabilitation, so we work collaboratively with the entire multi-disciplinary team, to understand the challenges our clients are facing and deliver the support they need to move beyond them. 

There is so much going on for someone who has experienced a life changing injury, which might include anything from sleep problems and financial difficulties to relationship issues. We understand that when we ask someone to be motivated and push themselves physically, it’s going to be even harder if they aren’t feeling well mentally.

But while many people struggle badly with significant mental health issues, the situation can vary greatly from person to person. It doesn’t need to be a mental health crisis or severe depression to require attention and action, the symptoms can be less severe. 

Feeling overwhelmed and fearful is common after a traumatic injury, which can lead to lower motivation, reduced engagement or a wish to isolate. All of these factors can cause great distress to a person (and their family), which can also delay or impact the success of physical rehabilitation.

We see clients who sometimes feel the effort required may not be worth it. This might be because the gains don’t seem big enough, the status quo feels more comfortable, or they are frightened they will injure themselves further. 

They can withdraw, feel helpless and become anxious – but staying in that place limits potential. We’re here to help our clients take back control and look towards a more positive future.

So, what can we do when a client is struggling to cope with their mental health? The psychologist’s role in the multi-disciplinary team is vital, to identify the problem and develop a plan to address it. But every member of the team needs to be involved if a client is going to reach their goals, whether that’s getting themselves out of bed in the morning or walking a mile.

At Breakthrough, our case managers work with each client as an individual to find out exactly what they need to reach their goals and then bring together the best possible team to support them. 

This might involve a personal trainer, occupational therapist, neuro-physiotherapist, vocational therapist and psychologist for example. They will also identify any other issues that might be interacting to affect ongoing rehabilitation – such as sleep, appetite or medication – and organise professional, practical or financial help to address them.

Even before establishing a team, the starting point is to set realistic SMART goals broken down into achievable milestones, which a client can get behind and truly believe they are able to achieve. 

These goals must be backed up by trust – in the case manager, team and whole rehabilitation process. Developing this trust starts from the very first time we meet a client, where we start to build their confidence in our professional expertise and experience.

When someone has been traumatised, rehabilitation can take a long time and it is, of course, not always easy. But with a plan and the right support it is possible to overcome obstacles that might have previously felt insurmountable.

The more people push themselves forward and see the benefits of the work they put in, the more resilient they become.

A positive attitude is also important. At Breakthrough Case Management, we are naturally optimistic, and this positivity, alongside our tenacity, supports our clients. 

We won’t ever give people false hope – we never promise that everything is going to be all right when it isn’t. But what we will always do is work together to find out what is possible, set realistic goals and make the most of a client’s potential to reach those goals.

Through our own experience, we know the physical, mental and practical challenges our clients face are inextricably linked. 

We know we can support their mental health, and in turn physical rehabilitation, by taking some of the anxiety away. 

This might be something as simple as organising payment of bills or sorting out basic house maintenance, and while these practicalities are peripheral to the main problem, they are often the straw that breaks the camel’s back.

We are here to help and ensure our clients feel cared for physically and mentally, because effective physical rehabilitation isn’t possible without good mental health support.

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Are we neurological time travellers?

Lisa Beaumont looks at the similarities between young stroke survivors and people living with Young Onset Parkinson’s Disease

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Advocating for Neuro ProActive has provided many introductions to numerous neuro visionaries.

For example, my response to a recent LinkedIn message from the national charity Spotlight YOPD, representing those with Young Onset Parkinson’s, saw CEO Gaynor Edwards pop in for a socially distanced cuppa. She brought fellow YOPDer and former neuroscientist Dr Jon Stamford with her. 

Therefore, since I am always keen to talk to the best brains in the sector I was happy to host – they brought cake to make the meeting all the sweeter. Rapidly, I discovered that young ‘strokies’ and young ‘Parkies’ have a lot in common – the conversation was easy and animated.

In both cases we were living with conditions more commonly associated with the elderly than those in midlife – as the three of us are.

Sitting round the kitchen table we all had hope – and a belief that as advocates for our conditions we could and would make a difference. As the generation of personal computers and mobile phones, we will probably be using AI to make some of that difference. Three smartphones sat alongside the mugs of tea and cake plates on the table. 

Health technology apps like Neuro ProActive in the hands of the right people – those impacted neurologically – is a potential game changer. 

I was  fascinated to hear from them about how much they feel an affinity with young stroke survivors, like me.

Three reasons for affinity between stroke survivors and YOPD 

1. We defy expectations

Most importantly, both groups, ‘Strokies’ and ‘Parkies’ face a shared challenge in that our conditions are popularly associated with elderly patients not mid-life people, like us.

2. Digitally capable

Thanks to our relative youthfulness, we are a tech savvy patient community and have the confidence to ask questions and demand attention from medics and peers.

Both our charities, West Kent Different Strokes Peer Support Group and Spotlight YOPD are so excited about the roll-out of Neuro ProActive nationally and internationally.  We both support cohorts of  young patients who will welcome the opportunity to have some agency in their treatment programme by being empowered to self-manage their condition digitally.

3. Multi-disciplinary teams

Despite the clear difference between stroke rehab’s management of rehabilitation and YOPD’s need to manage its degenerative symptoms, both groups share the need of input from a range of AHPs.  

Access to neuroproactive.com will give us an easy platform to reach those practitioners with whom we will be able to communicate, record progress and set goals in one place.

The identification of these three similarities between stroke survivors and YOPD reminded me of this quotation from Shakespeare: “Misery acquaints a man with strange bed-fellows”.( Tempest Act 2, scene ii).

Neither group feels miserable. By contrast, we feel excited. We are happy to promote the possibilities for improved care for our conditions in future.

I have discovered a new empathy for those who are diagnosed with Young Onset Parkinson’s Disease, and those who remain undiagnosed. It is significant that reliable data is hard to find for this condition.

It is a game-changer for Neuro ProActive that Ian Pearce tweeted  news in December 2021:

Delighted to announce that, following a public tender, ⁦@NeuroProActive⁩ will be adopted by the South Wales Trauma Network. This will involve integration with EPRs and an independent research study on 500+ patients funded by The World Economic Forum. 

Value Based Healthcare Wales. Likewise the news of its adoption by Leeds Children’s Hospital. 

More patients and data will deliver better outcomes for all neurological conditions, which like Shakespeare’s themes can apply to any age. Strokies and Parkies feel old and young simultaneously.

Therefore, we feel like time-travellers.

You can get your own glimpse of the future by visiting www.NeuroProActive.com

And follow @neuroproactive on Twitter for the latest news.

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Insight

The desire for discharge home

Renovo Care Group share a case study of delivering the rehabilitation and goals to help achieve the return home

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One of the most common patient goals we work towards in acute neurorehabilitation is often the one to be discharged home or to an alternative placement.

We recently had a patient admitted for a six-week assessment period to determine whether an escalation of distress was psychologically driven, neurologically driven or a mixture of the two. To give a bit of context to this situation, this gentleman had cerebral metastasis in his right frontal lobe secondary to lung cancer and had been sectioned several times over the past year due to risky behaviours towards self and others. Whilst he had a few goals that he wanted to achieve during his time with us, the main one was to go home to his family after rehabilitation.

Given that we had a short assessment period, the first question we asked ourselves was how were we going to work with him to achieve his goal?

Upon his inpatient admission, the gentleman was seen twice a week by physiotherapy and two to three times a week by neuropsychology for assessment. Physiotherapists and neuropsychologists are guided by evidence-based practice in their professions and use their knowledge from practice to develop the evidence.

After understanding the cause of an injury, they work to ease physical and psychological symptoms using a variety of techniques. Assessments using outcome measures and formulations are conducted to gain a holistic view to help to determine the best course of treatment for a patient. 

The main goal of physiotherapy sessions for this individual was to improve his endurance, strength, and participation in activities that he enjoyed. He was measured for his upper/lower limb strength using the Oxford scale. ROM (Range of Motion) and MAS (Modified Ashworth Scale) were also used to identity that he had a normal passive and active range of motion over all joints, and no muscle spasms were evident.

Finally, we assessed using the Berg Balance Scale, which is an objective way of determining how well a patient can safely balance during a series of predetermined tasks. He scored 55/56 which indicated a low risk of falls.

Initially the main goal of neuropsychology was to assess the gentleman’s cognition, behaviour, and emotions to hypothesis whether the distress he displayed was neurologically driven.

Maja Kreninger, physiotherapy assistant

Whilst he was previously screened using a brief cognitive test several years earlier, there did not appear to be a reassessment since the cerebral metastasis diagnosis. Therefore a comprehensive baseline to measure any further changes was required.

During inpatient sessions, the gentleman completed a battery of psychometric assessments to measure his current level of cognition. This included a test of premorbid functioning to find out an estimate for intellectual level before diagnosis, a current level of cognitive functioning (after diagnosis), language, attention, memory, and executive functions (higher-level thinking skills such as planning, cognitive flexibility, decision-making etc).

His behaviour and emotions were tracked over time using a mood/ behaviour diary filled out by ward staff. Mood and quality of life measures were also completed.

Our second question then became, how ethical is it to just provide an assessment when an intervention may also prove effective?

The simple answer is that it is not ethical. What is the point of putting a person through intensive assessment that may evoke anxiety or frustration if you aren’t going to provide them with the tools or strategies to support the areas of difficulty? It was obvious that this individual wanted to go home after his assessment period, but it was likely that he would still benefit from having neuropsychology and physiotherapy input.

The model we jointly decided on with him was for him to come in as an outpatient one day per week. With input from his family, he concluded that Wednesdays were a good day for him to travel to the hospital, engage in his sessions and travel back home. That way his preference of living at home and receiving neurorehabilitation could be adhered to.

Initially he was scheduled in for two neuropsychology sessions and one physiotherapy session with rest breaks in between. However, it became apparent after the first outpatient appointment that he was unable to cope with the high cognitive and physical demands placed on him in his sessions and catching the bus all in one day.

In order to manage his fatigue levels neuropsychology sessions would reduce to once a week to and the number of weeks that he would be an outpatient would be extended to ensure that he received the intervention required. 

As part of the physiotherapy intervention, the gentleman commenced a personalised strength training program using multiple gym machines. He was given a booklet with details about the exercises, correct methods, resistance, and repetitions so that he could access the gym on his own.

Joint sessions with Occupational Therapy were completed to ensure he could access the community, and exercises helped increase aerobic tolerance. This proved to be successful as he was able to independently go into town to complete activities of daily living, e.g., buying presents, going to the hairdressers etc.

As fatigue was one of the challenges encountered during sessions, physiotherapy focused on gradually increasing the amount of activity completed in a graded, flexible way that was monitored continuously. 

Similarly, neuropsychology also created an individualised intervention to help build his awareness into his brain injury. The intervention consisted of six sessions to improve knowledge of the structure and function of the brain, neuroplasticity, fatigue, and cognitive and emotional changes after brain tumour.

The sessions highlighted strengths and weaknesses of his cognitive, behavioural and emotional profile providing feedback from the neuropsychological assessments. It also included strategies which could be implemented to support the gentleman at home. He was given his

Ellie Knight, assistant psychologist

own folder with all of the session information to use as a memory aid and to share with family. 

Over time, he began to recognise his limitations in relation to fatigue and understood that he could take breaks, complete tasks when he was less tired and show self-compassion.

He reported that his brain injury awareness improved, and he felt much steadier on his feet. He started to engage in community activities such as going to the cinema and regularly walking near his home. After seven weeks as an outpatient the gentleman was discharged from our neurorehabilitation service – his main goal achieved. 

Upon reflection, the first step of his rehabilitation was setting SMART (specific, measurable, attainable, realistic, and time-related) goals that were tailored to his needs and wishes. This improved his motivation and confidence to participate in sessions knowing that we were all working with him to achieve discharge home.

Developing a sense of strength is a personal journey for every patient, whether it is physical, mental or in an everyday setting. As rehabilitation practitioners it should be our duty to assist them in this journey which will lead to improving their wellbeing and quality of life.

  • Written by Maja Kreninger (physiotherapy assistant) and Ellie Knight (assistant psychologist) of Renovo Care Group

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