When I became a doctor in the late 1960s, patients admitted with a stroke were nursed out of sight in quiet side cubicles, removed from the bustle of the open wards. On bedside visits we encouraged them to move their lifeless limbs, to speak and to work hard with the therapists. When they despaired, we offered hope, telling them that improvement could continue for up to a year. Those unable to go home were transferred after several weeks to ‘warehouses’, often at the far end of daunting corridors in district general hospitals. There they languished, drinking Guinness and smoking cigarettes. The priest was a more frequent visitor than the physiotherapist. These victims of misfortune had been all but abandoned by the medical profession and sometimes by their families too. The Royal Hospital for the Incurables in Putney and the National Spinal Injuries Centre at Stoke Mandeville were lone beacons of enlightenment in the south of England. In the great London teaching hospitals, the handful of physicians who took an interest in the rehabilitation of the acutely brain-injured were disparaged by the brotherhood (neurologists at that time were all men) as second-rate diagnosticians or well-meaning cranks.

This medical neglect, resulting from fragmented care pathways, insouciance and lack of investment, continued in the National Health Service until the end of the 20th century. The irony was that the National Hospital in Queen Square, founded in 1859 and regarded as the cradle of British neurology, would not have survived if its many paralysed patients had not been offered state-of-the-art remedial therapy. B Burford Rawlings, the hospital’s first secretary, wrote in his book A Hospital in the Making (1913):

Patients were rubbed, stretched, smacked, kneaded, straightened, electrified, hung from tripods, swathed in bandages, and steeped in sulphur baths … They were cased in plaster jackets; weights were attached to their legs; … occasionally they were hypnotised and if, after all had been done, the stubborn malady won the day in too many instances, it was only because the result striven for lay beyond the reach of human powers. 

In How to Use a Fork, Orlando Swayne, a neurologist at the National Hospital, Queen Square, describes the silent and largely unheralded revolution over the past twenty years, which has transformed neurorehabilitation from a Cinderella speciality at the hospital into one of the most dynamic fields of neurological practice, buttressed by evidence-based studies, long-term clinical observation and neuroscientific discovery. Swayne’s patients are survivors of stroke, serious head trauma, cardiac arrest and encephalitis. Some have woken after weeks in a coma; others remain in a minimally conscious vegetative state, unable to show they are still alive. There is a patient who is fully aware but locked in, unable to move and able to communicate only through eye blinks; another who is fully alert but completely inert, stripped of all drive. The book also discusses functional paralysis (formerly known as conversion hysteria), in which patients have a normal brain scan but have lost the ability to move their limbs. Many have been written off as untreatable.

The working life on the ward is described in detail. Instead of sulphur baths and faradic stimulation, there is now a gymnasium for goal-directed therapy, with Zumba workouts, quizzes and cooking classes, all focused on the restoration of function. Heart FM radio provides the background mood music. Swayne sits with and attends to his patients. He is even cajoled by his colleagues into joining group therapy sessions rather than sitting at a desk answering emails. His casebook is full of detailed reality and devoid of theatricality:

One of my greatest pleasures in this work is to observe the unexpected friendships that often form – the ex-con Essex hard man with the shy Sikh electrician, or the genteel blue-rinse lady with the phone-bound British-Somali teenage girl. 

He also reminds us that neurorehabilitation is an ongoing process rather than a contained treatment; when improvement occurs, it is slow and hard-earned. Acute brain injury, in contrast to living with a chronic neurological disorder such as Parkinson’s disease, demands sudden and drastic readjustment. To achieve the best outcome, a coordinated team of physiotherapists, occupational therapists, speech and language therapists, dieticians, psychologists and social workers is necessary. He also praises the unit’s indispensable administrator.

The brain is not hard-wired, as was once thought, and after acute brain injury it can reorganise neural circuits through remodelling of its hundred trillion synapses, the electrochemical connections between each neuron. Santiago Ramón y Cajal wrote in 1892 that exercise and environmental stimulation strengthened the connections of nerve cells in a process he called ‘cerebral gymnastics’. Swayne is taken with the new scientific insights into neuroplasticity and the empirical studies it has generated, which have helped dispel the notion of a finite window for improvement after acute brain injury. However, neuroplasticity is a double-edged sword, and maladaptive reorganisation can lead to late complications such as severe complex pain syndromes and dystonic contractures of the hands. 

Swayne’s understanding of physiology and anatomy allows him to provide clear, jargon-free and at times poetic descriptions of what has gone wrong in the brains of his patients. The potential of new technological approaches, such as magnetic and electrical stimulation, brain-computer interfaces, robotic exoskeletons and virtual reality games, as well as more mundane approaches (constraint-­induced movement therapy), is discussed. Medications such as amantadine and dopamine analogues can modestly improve vegetative states, and stem cell-based neurorestorative therapies remain under investigation. Swayne also gives his readers an engaging glimpse of his own personality and clinical approach, always a challenge for practising physicians. He relates how experiences on the wards, working as a junior doctor, pushed him towards neurorehabilitation. Personal life events, including his father’s fatigue and slow mental adjustment after cardiac bypass surgery and his mother’s preserved essence during her slow death from respiratory failure, helped him to become a better doctor.

In the last chapter, entitled ‘All the King’s Horses’, he writes:

But even if by some miracle of engineering Humpty’s shards could be scraped off the floor and each one stuck back exactly where it came from he would not look quite the same. He would always be slightly different from before he made the ill-fated decision to sit on that damned wall.

This echoes the opinion of the German neuropsychiatrist Kurt Goldstein (1878–1965), whose experiences helping the walking wounded during the First World War led him to adopt a more holistic approach to rehabilitation, aimed at supporting the physiological compensations that occur in response to neurological deficits and releases. Goldstein noted that some of the shocked casualties stopped using intact brain functions from fear of what he referred to as a ‘catastrophic reaction’, debilitating emotional crises that overwhelmed them when they tried to perform tasks they were convinced were beyond their reduced capacity. One hundred years later, Swayne is trying to help people adjust to these lasting changes and to live the best lives they can in their new, altered states.

How to Use a Fork is a tribute to the spirit of people faced with calamity, who struggle not only to remain alive but also to claw their way back to regaining a semblance of their former selves. It will be embraced by the medical profession as a sign of advancement and will provide realistic hope to those who have grieved the sudden loss of an identity they loved in a person who is still physically present. Below the convolutions, in the sunless deep, the soul remains. Swayne also draws attention to the positive changes in personality that devastating injuries to the brain can sometimes release, such as greater emotional warmth, improved patience and a childish delight in inconsequential things. Despite the book’s back cover, which talks about the woman convinced her right arm is a baby and the man who thinks the glove on his hand is a fish, this is really a book about the difficult and often heartbreaking business of mending broken brains.