Robert Millett meets a physiotherapist who is part of a team that treats people with ‘locked in’ syndrome and severe brain injuries.
Clinical specialist Teresa Clark with rehab patient Nigel Woods, playing baccia
The mysteries of human consciousness are more often associated with philosophy, rather than physiotherapy. But identifying and assessing subtle levels of consciousness is all in a day’s work for a team of physios at what is claimed to be the longest surviving independent hospital and medical charity in the UK.
Founded in 1854, the Royal Hospital for Neuro-disability (RHN) in Putney, south west London, provides a range of services, including specialist care for adults with severe brain injuries and complex disabilities. Clinical specialist Teresa Clark, the hospital’s lead physiotherapist for brain injury services, works with a multidisciplinary team of clinicians. She explains that the hospital has been able to develop highly specialised, in-house services for people with brain injuries.
‘Our charity status allows us to provide a unique service to our patients, beyond the traditional rehabilitation model,’ says Ms Clark. This includes music and art as therapy, leisure services and the support of volunteers to help patients, residents and their families to increase their participation in social events. In addition, the hospital has an on-site augmented assistive technology (AAC) department, an interdisciplinary tone clinic, a research unit and a specialist wheelchairs department, which can create customised seating and postural systems.
The brain injury team includes nine physiotherapists, as well as technical instructors and physio support workers, says Ms Clark. Referrals are accepted from around the country and the service is equipped with 50 rehabilitation beds. ‘Most people come to us through a traumatic route, such as a car accident or a fall from a building,’ says Ms Clark. ‘But we also have a lot of severe stroke patients.’
The hospital provides a contracted service to NHS England, which allows patients to apply for ‘level 1 rehabilitation’ funding and be directly referred by clinicians. Level 1 rehabilitation is designed for people who have had a severe neurological injury, leaving them with complex physical, cognitive and communication disabilities, says Ms Clark.
Once admitted, patients receive specialist assessments and rehabilitation, and disability management is provided for people diagnosed as living with ‘a disorder of consciousness’. ‘With brain injuries we talk about consciousness as a spectrum,’ says Ms Clark. ‘At one end you may have someone who is ventilated and in a coma, with no signs of life and no normal sleep-wake cycle.
‘Then you have a prolonged disorder of consciousness (PDOC), which is a state above a coma. This is where people demonstrate transient, unreliable and unreproducible signs of awareness.’
The assessment and diagnosis of patients with PDOC is an area of specialist practice at the hospital, says Ms Clark. ‘The patient group has always existed, of course, but its assessment and management is a relatively new area,’ she says. ‘It is still quite niche and there aren’t many other providers who deal with the high numbers we do.’
The service aims to empower family involvement in every element of rehabilitation, from goal setting to discharge planning. ‘With alert rehab patients we involve them and talk about their goals, and with patients with PDOC we ask the families to complete a questionnaire before they are admitted, so we can collect information about who that person is,’ says Ms Clark. ‘We also learn about what sort of leisure activities that person may have enjoyed and we get a rehab assistant to come in and see if they can facilitate some kind of participation in that activity.’
With PDOC patients the team often use the Sensory Modality Assessment and Rehabilitation Technique (SMART), a specialised assessment model that was developed at the hospital. SMART is used to determine an individual’s level of consciousness and understanding, explains Ms Clark.
‘The aim is to accurately establish where someone exists on the spectrum of consciousness, and examine all of their sensory functions. So we look at all the possible ways that someone might perceive things around them and we look for responses, for instance, from visual and verbal commands or via the sense of smell.’
Following an assessment the team establishes a treatment protocol that aims to enhance the person’s sensory and interactivity activities. This can include the use of customised seating, postural management, AAC, such as eye gaze technology, and the use of respiratory adjuncts to support tracheostomy weaning. ‘With our rehab patients, who are alert and able to speak, it might be how to drive a wheelchair or use assisted cycling,’ says Ms Clark. The team also uses functional electric stimulation, to strengthen muscles and re-educate movement, and body-weight supported treadmill training.
‘Locked in’ syndrome
Some patients have ‘locked in’ syndrome. ‘These people can only move their eyes, they can’t speak or swallow, or make any noise – but their personality and all of their cognitive functions are entirely intact,’ explains Ms Clark.
‘So we use augmented assisted technology so that they can use their eye movements to communicate.’
Gaze technology can also be used to help strengthen and retrain the muscles that move the eyes, using the same principles of repetition and feedback of any strengthening programme. ‘Through the use of eye gaze and AAC technologies, we can translate patients’ eye movements into communication and people can interact and gain greater interdependence,’ says Ms Clark. ‘The technology can be used to access the internet, or even to drive a wheelchair.’
Person-centred problem solving
Ms Clark says much of the focus of her work is about finding and enhancing ability, however small it may seem. Collaborating with colleagues often helps to optimise the outcomes for the people they serve.
‘The role of the physiotherapist in this setting is incredibly varied,’ says Ms Clark. ‘Physiotherapists are phenomenal problem solvers and patients get the most out of us when we work with our therapy colleagues and think beyond our usual remit.’ The in-house specialist services at RHN enable the team to find innovative ways of achieving goals, she explains, as ‘we have a wide range of skills and services at our disposal’.
‘For instance, we are able to seat patients that other hospitals have struggled to seat,’ Ms Clark says. ‘And that’s because we are lucky enough to have an on-site postural management clinic and biomedical engineering service. That means engineers can come up to the wards, problem solve with our therapists, and build custom-made equipment for our patients.’
The service continually strives to provide a holistic and patient centred service to both patients and their families. Its mission is to help people ‘achieve their full human potential and enjoy the optimum possible quality of life, whatever their level of ability’. ‘And that remains central to our goals and is still the heart and soul of the organisation,’Ms Clark adds. fl
One patient was admitted to the service after suffering a brain haemorrhage last November. She presented as having prolonged disorder of consciousness (PDOC), but soon began to demonstrate signs of awareness and interaction with the world around her.
The woman was tracheotomised and unable to use speech to communicate, but was able to follow instructions. ‘So we needed to find an alternate way for her to effectively communicate,’ says Ms Clark. The only body movement the patient could make reliably was a limited thumb flexion. This indicated that she would be able to grasp a switch, explains Ms Clark.
But her ability to release, and therefore use, a switch was limited by severe weakness and increased tone elsewhere in her thumb and hand. ‘So we devised a treatment plan of focal hypertonicity management with botulinum toxin, followed up by a programme of functional splinting and electrical stimulation to aid specific strengthening of the required muscle groups,’ says Ms Clark.
In time, the patient was able to extend her thumb independently around a switch and apply enough pressure to trigger various functions. She can now seek attention from those around her and indicate her preferences in decisions about her care and day-to-day activities.
Thanks to a deal signed last year, the CSP now represents more than 30 physiotherapy staff at the RHN. At the time Anthea Besser, head of human resources at the hospital, said: ‘Physiotherapists are a vital part of our workforce and we are pleased to have worked with the CSP to achieve official recognition status. Working in partnership the RHN and CSP will develop the specialism of physiotherapy to ensure it evolves to meet changing patient needs, and that staff are part of this exciting journey.’
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