Dr Tom Balchin’s mission to help UK stroke survivors was forged in tragedy. In late 1996, his twin brother Alex died aged 21 after falling from a building during a night out in London.
Three months later Tom suffered a serious subarachnoid haemorrhage stroke, which he believes may indeed have been triggered by the stress of losing his sibling.
“I wasn’t coping very well before the stroke and there was a lot of grief I just couldn’t get out,” he says.
He was initially paralysed down his left side and weighed just nine stone when he left hospital in a wheelchair six months later. His journey to independence taught him a lot about what really works in rehab; and shaped the ARNI Institute, which has helped thousands of stroke survivors since Tom founded it in 2002.
“I wanted to get out of hospital as soon as I could and I just went for it. I got hardcore about it! At home, I remember hauling myself upstairs on my behind, step by step, to prove that I didn’t need a stairlift.
“I used combinations of all sorts of exercises I found for myself, including piano finger playing exercises – but the best thing in those early days was to try to get back to my DJ decks, put my paretic hand on the platter and try and move it back and forward, beat matching. I even turned the decks backwards initially, before my fingertips were able to grip into the grooves of a record, and made special surfaces for records which assisted my fingers and thumb to move where I wanted them to go.
“The headphone was held on the side of my brain which had suffered the stroke. I progressed to being able to control the cross-fader, equalisers and samplers, take records out of and back into sleeves with my good arm and hand. It was intensive… at least four hours per day, for a number of years. The other big thing was that I was evaluating my performance in relation to my action control each time by recording what I was doing. I made some terrible tapes.
“I would encourage anyone with spasticity in their upper limbs to consider this kind, or any kind, of intensive dosage of fun ‘hobby’- type training. It’s very hard for patients to find the right thing to do, but anything they can do to ramp up the number of hours of rehabilitation, the better.
“Back then there was nobody around to tell you not to do something, which was good, in a way. I had to innovate. Over the last 18 years or so, I’ve seen patients time and time again being told not to move for fear of doing bad movement. But in most areas, particularly lower limb rehab, this is wrong and out-of-date.”
ARNI – or Action for Rehabilitation from Neurological Injury – works with stroke survivors “stuck in limbo” after their therapy programme ends.
Via a network of specialist instructors and therapists across the UK, they learn ARNI’s functional “retraining” strategies aimed at enabling them to take charge of their own recovery.
It offers intensive one-to-one sessions in the home, some group classes and training manuals and DVDs which encourage stroke survivors to continually work on their rehabilitation. Classes are paid for by the client, although often at a reduced rate.
Balchin, however, has always been a volunteer in his own charity and has never taken any payment for his input. The programme is designed to speed clients from the stage where an NHS therapist becomes unavailable, to making recommended activities part of their daily life as they work towards more independence.
Its therapists and professional instructors meet the standards of the Stroke-Specific Education Framework. Clinical Commissioning Groups and charitable and local authorities provide community- based ARNI training for stroke survivors, which has been positively received.
The approach is now the adopted model for combined rehab and exercise after stroke for a number of UK areas.
“My big mission when I launched ARNI in 2002 was to get one ARNI qualified, appropriately insured and DBS-checked trainer within five miles of every stroke survivor who needed help, wherever that was in the country. I now have about 120 trainers on the books and am almost there. We haven’t quite got to everyone yet, but we’re getting there.”
Stroke survivors on the ARNI programme are matched with personal trainers and physical therapists; their focus is on helping people with partial paralysis to make as full a recovery as possible.
Results are achieved through various activities, including education in exercise principles after stroke and the establishment of an independent home-based exercise programme.
ARNI also develops skills in goal setting, functional problem solving and self- monitoring. It is a personalised programme, with substantial one-to-one training to ensure individual tailoring of activities, feedback and progression, and encouragement to work “at the edge of personal capacity”.
The approach has become increasingly well evidenced since 2007. In one small study, reported at the World Stroke Congress, involving 24 stroke survivors at the ARNI stroke gym at Chaul End Centre in Luton in 2011/12, participants reported improved mobility, range of movement, fatigue and confidence. Service audit data reported 24 ambulance call-outs for fallers during the year preceding intervention.
In the year of the intervention there were zero call outs, with an ambulance service saving of £7,200. This particular statistic was mirrored the following year.
Further savings of £5,482 came from the reduction in care packages, nursing input, catheter care, respite care, appliance support and medications.
Another small-scale study in 2014, supported by the NHS and the charity Different Strokes, revealed that all participants showed ARNI-powered improvements over a span of clinical measures.
A number of bigger randomised controlled trials have been undertaken, including one supported by Stroke Association, entitled ‘Retrain’. This was conducted by the University of Exeter and published in 2017.
It involved 45 patients and showed that ARNI is feasible, acceptable and safe. It also showed that key techniques involved in it could successfully support patients with one-sided loss, including those with multiple comorbidities (eg with lower limb amputation).
This year, an upper limb research study is taking place at Brighton and Sussex Medical School, looking at the efficacy of use of ARNI upper limb task training by patients and families in the clinic.
The ARNI programme involves task-specific functional movement training, development of physical management strategies, stroke- specific resistance training with adjuncts such as technology and pharmacological inputs recommended as appropriate. It was borne out of Balchin’s own rehab experience. He credits part of his success to an “innovative” physio who, in the early days after his stroke, taught him the importance of regaining self- reliance as quickly as possible.
Martial arts were also hugely influential. Despite the remnants of partial paralysis on one side, he powered through the coloured belt classes of aikido, karate, taekwondo and hapkido in the years after his stroke.
He also learned Teukgong Moosool, the official martial art of South Korea’s special forces. In 2008, he was awarded the grade of 3rd Dan by Grand Master Lee (8th Dan), Head Grand Master of the International Teukgong Moosool Federation.
Balchin also became a serious power-lifter and strength athlete, regularly working with non-stroke trainees. He added strength training into the mix from the initiation of his project for stroke survivors, at a time when the majority of UK therapists were not introducing it for fear that it would exacerbate tone.
It was difficult to find the evidence for strength training for stroke in the very early days, he says, but eventually did, academically justifying his project and implementing it successfully.
He honed his mental strength and capacity after his stroke too. He went back to university to finish his first degree and then taught for two years in a primary school.
He then went on to complete a masters degree and Phd and spent three years as a research fellow/lecturer in gifted education at Brunel University, London. Following that, he worked as an MA course leader in gifted education at Reading University.
He says: “Through my training, I regained nearly all my functional movement, and continued to perfect it twenty years later using ARNI-developed techniques.
“I still train all the time as it’s the only way to stave off limitations from stroke; and I’m still dealing with drop foot.
“The biggest weapon you already have on your side is definitely neuroplasticity. I learned that from Professor Nick Ward who runs the UK’s first specialist upper limb clinic. A very early supporter of ARNI, he helps me run the ARNI functional rehabilitation course for therapists and trainers.”
In the case of stroke, brain plasticity could allow certain lost functions, such as speech and language, to re-emerge as the result of intensive rehab. The ARNI system contains techniques designed to prime the body for task-related practice.
Often, therapists help stroke survivors to get to their feet and walk again after brain injury and many achieve great successes in the very short time they have to work with them in the acute/chronic stages.
However, ARNI works with many stroke survivors who find it hard to move on from sticks, orthotics and other aids to functional movement. Many feel they could achieve better function in their weaker hand, for example, if given a chance to do so by an ARNI instructor.
The benefits of rigorous training beyond the standard allocation of post-stroke therapy sessions are wide ranging, according to ARNI. They include balance and posture correction, improved timing, better flexibility and greater muscular, tendon and ligament strength.
These in turn can boost self-sufficiency, confidence, self-esteem and productivity in employment or hobbies. In ARNI’s case, clients are encouraged to work “on the edges” of their current ability to stimulate maximum neuroplasticity. Instructors teach progressively more advanced exercises.
A core part of the ARNI approach is to teach clients how to cope with falls; the most dangerous part of the balance problems caused by stroke.
Trainees (many of whom have the functional use of just one arm) learn how to get down to, and up from, the floor without any kind of external support to pull themselves up with.
They also learn other innovative strategies such as turning, step and ramp navigation and emergency action techniques. Balchin also teaches what he calls “gait-tactics”.
Upper limb retraining is a large part of the syllabus, with no coping or compensation allowed for the patients in this area: they are taught creative stretches to access, and then extend time, on discreet and progressive tasks, with spasticity decline being a focus.
“You have to develop strategies that are workable for the individual. You can give them the tools they need but clients need to be able to personalise them. Also, a key to good recoveries that I worked out straight away is that you can’t tell people they can’t do things. That’s absolutely critical.”
Balchin believes the rise of ARNI is timely, given current trends in UK healthcare. He points to the “sad fact” that effective rehab is generally unavailable from the NHS once sufficient movement to simply get around has been achieved.
At the same time, neurophysio and occupational therapy services are stretched, he says, while he believes stroke classes that promote active task-related functional movement and resistance training are non-existent.
“Most physical after-stroke classes that do exist are fitness-focused and many attendees report that these are, in conclusion, unable to provide them with the specific and custom tools they need to rehabilitate functional limitations or effectively cope with the rigours of their daily lives.
“This is especially the case if extra problems persist such as epilepsy, aphasia or fatigue. Most report that they need external help to guide balance control or spasticity decline for example, but that their essential cardio fitness can, in the end, be done better at home.” Meanwhile, global research findings have backed up the ARNI way for years, he believes.
Home visits and outpatient exercise programmes have been shown to improve gait speed. Research into ARNI techniques show that in a number of activities, performance is retained and built upon.
Balchin cites the example of the Dutch researchers Kollen, Kwakkel & Lindeman who, in 2006, reviewed all available published, clinical stroke rehabilitation trials, of which at the time there were 735.
They selected 151 studies including 123 randomised controlled trials and 28 controlled clinical trials. The rest did not meet the inclusion criteria as they lacked quality or statistical validity.
They wrote: “Traditional treatment approaches induce improvements that are confined to impairment level only and do not generalise to a functional improvement level”.
In contrast, they stated that: “More recently developed treatment strategies that incorporate compensation strategies with a strong emphasis on functional training, may hold the key to optimal stroke rehabilitation.”
In summing up their findings, they reported that “intensity and task-specific exercise therapy are important components of such an approach”.
Balchin says: “There is a good range of interventions with strong evidence of both efficacy and effectiveness now. Cochrane reviews have found that electromechanical gait training, treadmill training, circuit training, physical fitness training, repetitive task training, CIMT, mirror therapy and FES are also effective.
“You’ll notice that all of these interventions require that you DO something. So many stroke survivors do what is essentially a homeopathic dose of what is required to recover well.”
The delivery of ARNI’s services usually relies on the goodwill of others. While individuals pay for one-to-one sessions, the session costs are low – around £45 to £55 an hour.
The charity’s overheads are partly covered by physios paying to become qualified trainers and serious rehab training sessions at ARNI’s headquarters in Lingfield, Surrey.
The charity also gives full bursaries to students and runs a trainer sponsorship programme which enables any organisation, family or carer to sponsor an instructor through the ARNI qualification. The course fee is partly paid back by the instructor in the form of free lessons to the survivor. The charity also often gives away helpful material such as copies of The Stroke Survivor Manual and its stroke survivor DVD set.
“It’s a fact that a lot of stroke survivors just don’t know what to do when their clinical physio ends because they haven’t been set up properly to do better. What they probably need is an evidence-based, innovative and personalised programme of training strategies, a low-cost means of trainer or therapy support as they do it and to be guided to access helpful local community services or other specialist services.
“It’s really important that survivors are guided to autonomous retraining efforts if possible, in order that they may fulfil goals and thrive rather than decline, become dependent on others or just re-enter the care pathway.
“This is really hard to achieve, but one by one, over the years, ARNI has helped a vast amount of people. I’m proud of this and of the way that, by its sincere efforts, ARNI has gained the trust and support of professionals in neurorehabilitation over the years.”
Balchin describes the charity as his life’s works and passion. “Stroke has driven me to get better, and it continues to drive me to make the effort to help people affected by stroke to do better,” he says.
‘Don’t count the days, make the days count’
In our latest interview with the Brain Injury team at St Andrew’s Healthcare, we meet Dr Lorraine Childs, a Consultant Clinical Psychologist on Rose ward, one of only three secure neurobehavioural units in the country.
Dr Childs and the team on Rose use a neurobehavioural approach that supports people who have a forensic background to re-learn skills that have been impacted by their brain injury.
As she explains: “Unfortunately, brain injury can result in an increase in aggression, so we do a lot of work to identify what a patient’s goals are and help them to achieve their aspirations in pro-social ways that preclude the use of aggression.”
Co-production between patients and the clinical team has led to the development of programmes such as ‘Better Lives’, used to encourage people to take an active role in decisions about their care. These type of approaches are transferable across all settings where people are receiving support and rehabilitation following a brain injury.
We spoke to Lorraine to find out more.
What is your experience in mental health?
I have worked in mental health for over 25 years. I have worked across the UK including St Andrew’s, Broadmoor, Rampton and in New Zealand.
I specialise in Forensic Brain Injury. I used to specialise in LD but became very interested in the etiology of learning disabilities and people who had ABI from an early age.
What are the challenges in your role?
People who have a brain injury and require secure care tend to benefit from consistent, structured treatment.
Many of our patients are negatively affected by change and inconsistency. Working with large groups of staff can make it difficult to keep things consistent and this has been especially pronounced during the pandemic. I try to counter this by keeping things simple and comprehensive.
What do you most enjoy about your role?
Working with a team of staff and patients. Creating things together, that are meaningful and purposeful.
On Rose we have a really good structured neurobehavioral programme, developed by staff and patients, which works at both a group and individual level.
Describe the service you work in and some of the approaches that you use.
Rose is a medium secure neurobehavioral ward for people who have forensic backgrounds. Unfortunately, aggression is one of the things which can accompany brain injury and this is why some people need secure care to keep them safe.
We work with a neurobehavioural paradigm, helping people to learn new skills or relearn skills that have been affected by brain injury. We give patients opportunities through extensive vocational options and a range of therapies.
Our ‘Better Lives’ programme provides people with opportunities to learn life skills. Patients really understand that they are here as part of their journey to achieve a better life.
In fact, our ward icon and motto is Muhammad Ali and his quote; ‘Don’t count the days, Make the days count’. In other words, the patients can influence their own future every day.
Co-production is key to this programme. For example, as a result of ‘Better Lives’ sessions we have co-produced a ward clinical treatment philosophy, a healthy-living programme and an information leaflet for newcomers. Patients requested for this to include information about timetables, events, contacting family and there is a poem written by a patient about their experience of moving here. Feedback about this is positive, one new patient said “it is informative and puts the mind at ease”.
We encourage patients to take an active role in decisions about their own care, especially via Positive Behavioural Support Plans and utilising feedback. Increasing involvement encourages ownership and responsibility, even within a necessarily restrictive setting, and can help equip patients for their future in settings of lower security and community.
Describe a typical patient presentation.
There is a very diverse group of patients on Rose ward. Ages range from late teens to 60s. If I had to describe a ‘typical’ patient it would be a male in his 40s who had a brain injury in his 20s, usually because of a road traffic accident or substance related, leading to a loss of functioning, cognition, social and physical abilities.
Most people who come to Rose have spent up to 10 years in standard psychiatric inpatient units and often well over a year in prisons. In fact, 100 per cent have been in psychiatric units and 70 per cent in prisons but only 16 per cent have had any psychological or neurorehabilitation.
So for many, St Andrew’s is the first time they have had some treatment support for their brain injury needs.
What is the difference between Rose ward and a general neurorehabilitation ward:
Rose is very unique due to the forensic aspect of the ward. Rose specialises in working with people with high levels of aggression and working with people to help them to find alternative ways to express themselves and achieve goals.
What are the main interventions used:
Our key intervention is the neurorehabilitation programme. This aims to assist patients in compensating for the deficits they have in communication, volition and motivation, by providing a scaffold structure where they can safely develop skills required for daily life that are lost because of their brain injury or lack of opportunities in early life.
We also do a lot of health promotion and healthy living work on Rose and have presented at conferences and won awards for our work. I think lockdown had a negative impact on most of our waistlines and so we have an opportunity for staff and patients to work together to improve our diet and wellbeing.
What sets St Andrew’s apart:
St Andrew’s provides a clear and structured pathway for neurorehabilitation patients, with evidence-based success for patient outcomes.
This shows how patients progress in terms of increased levels of cognition, social skills, reduced levels of aggression, and increased levels of leave within the community.
Most importantly however, the patients have the opportunity to move towards their life goals. 50 per cent of patients from our Medium Secure Unit go straight to community rehabilitation. Most others advance to low secure. All go closer to home. This is what we are here to do. We do it well and help to shape Better Lives.
St Andrew’s Neuropsychiatric service provides specialist pathways for brain injury, dementia and Huntington’s disease across secure, non-secure and step-down settings. To find out more visit the website HERE
The Importance of Being Earnest in Transitional Services
Throughout childhood there is one team which deals with everything that the patient would need. As the children continue to grow, we wonder what will happen to them when they are too old to be cared for by the same team. So, what do we do with young patients who have been cared for very intimately by the paediatricians?
When they become adults, they could potentially find themselves thrown into a whole new world of healthcare which is not as homely, or as individualistic, as they would have experienced in the children’s services?
This particular demographic of patients faces plenty of challenges when transitioning to the complexity of adult life and, subsequently, adult responsibilities. Those individuals with complex physical and psychological health needs have additional difficulties in the road to transition. These needs would previously have been met by the same handful of individuals but, as they transition to the adult healthcare system, they will find themselves being transferred around multiple departments to provide them with the specialist care they require.
The introduction of transitional processes should probably start early around the ages of 12 to 14 to allow for a period of discussion and acclimatisation to ensure greater confidence in services by the ages of 16 to 18. The time required depends entirely on the individual and the complexity of care required. Some young people can transfer almost immediately to adult services whereas others require years of transition to ensure the optimal manner of transfer.
The process and team working on providing transitional services will differ from place to place. There will be qualified individuals responsible for ensuring the transition is as complete and as comprehensive as possible. There is no one definite system but each one works towards a common goal of providing a smooth and seamless “handover” of care from the Paediatrics team to Adult Health services.
All young people going through a process of transition should be provided with a written transition plan which would summarise and outline the key phases of the transition process. This should also have the names of the persons responsible for the specific aspects of the ongoing care needs. Should anyone not be sure of the process they are going through there will always be a main point of contact for clarification and explanation.
Some services will provide site and process visits to allow young people to experience the travel to a service and the site of the service itself. In some situations, depending on availability, they may be able to meet with some of the teams who may be providing them with care in the future.
Other aspects potentially covered could include medication as the young adult may be required to take on responsibilities including self-administration of medicines and treatments just as they would need to take on responsibilities in other areas of their lives.
The transition teams will also involve the parents or responsible adults in the transitional process as it would also take time for these responsible individuals to get to grips with the process of “letting go” of aspects of care which would previously have been their responsibilities.
The ultimate goal of any transition service is to ensure that the young person has all the skills and contacts available to ensure comfort and confidence in their transfer to adult health care services. This will feel somewhat like being “thrown” into a great unknown at time for all involved. The CQC had published a document with overviews and case studies of previous transition patients which is definitely worth a read by anyone going through this same process.
Just as the healthcare service plans to discuss transition early on, it would be ideal if families could have similar discussions at home around common themes such as;
- Learning the names and methods of taking medication, how much to take and asking the reason for taking the medication
- Seeing Health Care Professionals on their own for all or part of their clinic reviews
- Staying at hospital overnight on their own
- Monitoring hospital appointments
- Any questions around current and future healthcare needs
- How their condition may have impacts upon their lives in the future such as, for example, direct impacts on career, relationships, and intimacy.
It is essential that all people involved in the care of the young person, including the young person, should continue to ask questions around their care and to raise concerns with the relevant adult teams to ensure the best care going forward.
- Dr Jonathan Mamo is a Consultant in Neurorehabilitation at Renovo Care South Newton. He is also the Clinical Lead and Consultant for the Royal Berkshire Hospitals NHS Foundation Trust, Training Program Director for Health Education England Thames Valley and Clinical Panel Member for the Individual Funding Request Board for NHSE.
‘Better psychological support needed for frontline healthcare workers’
Frontline healthcare workers need a range of ‘flexible’, ‘easily accessible’ and ‘consistent’ psychological support to overcome the significant mental health burden resulting from the COVID-19 pandemic.
A team of psychiatrists and psychologists, who formed the Covid Trauma Response Working Group, say there needs to be an increase in mental health awareness training for all staff in health and social care settings, supported by more assertive outreach to identify those most in need.
In addition, more sustained funding is needed for psychological support services – not just during crises – and equity of access to support needs to be ensured between different teams, services and localities, across the entire health and social care sector.
Dr Jo Billings, associate professor at UCL Division of Psychiatry, who led the study, said: “In the UK, it has been estimated that 45 to 58 per cent of the frontline health and social care workforce met criteria for clinically significant levels of anxiety, depression and/or PTSD shortly following the first wave of the pandemic.
“This is amongst a workforce already under considerable strain pre-COVID-19, as evidenced by the growing incidence of stress, burnout, depression, drug and alcohol dependence and suicide across all groups of health professionals, worldwide.
“The need to support the mental health of frontline staff during Covid-19 has been recognised, however this pandemic has also highlighted a paucity of research on the mental health needs of frontline health and social care workers, and a lack of evidence-based guidance about what psychosocial support might be most effective in helping them.”
For the in-depth qualitative interview study, 25 frontline staff (17 female, eight male) from a range of professions, services and localities – but who all worked directly with Covid-19 patients – were interviewed between June 1st and July 23rd, 2020.
Health and social care workers were asked to describe their experiences and views about psychosocial support during the pandemic.
Support from psychological services, when available, was largely valued, and those who had accessed them, or knew others who had, spoke positively about them. However, there appeared to be large disparities in what was available and significant barriers to access.
Many described service provision as confusing and poorly communicated, leading to a lack of awareness about services available. It was also described as inflexible with some services only available Monday to Friday in working hours, which did not correspond to the shift patterns that most staff worked during the pandemic.
Further, many said they were too busy to access support services during the available times.
The interviews revealed there were ‘striking inconsistencies’ in the provision of mental health support across healthcare services, noted by those who moved between locations and specialties.
There were particular barriers to access for staff who were not employed by the NHS, restricting access to many NHS based services for social care staff and agency staff not on NHS contracts.
Participants also referenced an ongoing reluctance and stigma, summed up by Nathan, a junior doctor: “The problem with healthcare is that mental health is slightly stigmatised in healthcare workers and people don’t want to admit that there is a problem…they stress a culture of resilience and I don’t think anyone wants to be seen as being unable to cope with anything.”
Dr Billings, who is also a consultant clinical psychologist, said: “Significant steps need to be urgently taken to improve the psychological wellbeing and morale of the UK health and social care workforce and to ensure that the services they deliver to the UK population are sustainable, during the COVID-19 pandemic and beyond.
“Resources for support need to be made consistently available, and easily accessible to all staff.
“However, systemic and cultural barriers to access need to be addressed to ensure that accessing such resources is not inadvertently stigmatising.
“Access to resources also needs to be equitable, within different teams and localities and across the health and social care workforce.”
Other recommendations put forward by the group included staff having ‘protected time’ during work to access wellbeing and psychological services; staff who are redeployed between teams need additional support; role modelling by senior staff and culture change are needed to increase willingness to talk; and a flexible combination of peer, organisational and professional support, is most likely to be acceptable and effective.
Co-author, Dr Michael Bloomfield, UCL Division of Psychiatry and consultant NHS psychiatrist, added: “The results of this study show that a ‘one-size fits all’ approach to providing support is unlikely to be helpful. Nevertheless, these systems of support need to be coherent, consistently communicated and easily accessible.”
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