I
was told my husband would never talk again, while physiotherapy was
dismissed entirely. My son was failed in similar ways, but for the
brilliance of some medical staff who refuse to believe a stroke is the
end
Thu 15 May 2025 00.00 EDT
On
the night before the accident, John and I and our son Jay, who was then
26, lingered in the garden drinking wine and enjoying the mid-summer
scent of jasmine and lilies. We talked about the Manet exhibition we had
just seen at the National Gallery. We probably talked about how the end
of the cold war might affect the chances of Bill Clinton winning the
presidential election against George HW Bush in November. I know what
John thought about that. I only wish I could recall his words.
The
next morning, 30 July 1992, John got up before me as he always did. In
the kitchen I found the contents of the dishwasher – knives, forks,
spoons, plates, mugs – jumbled together on the table. This was odd
because unloading the dishwasher was the one domestic ritual he
willingly performed. It would be years before I learned the reason. At
the time I put it down to absent-mindedness. It was a month since he had
delivered a book to the publisher and he was already preoccupied by the
next one, about art in the European Renaissance. Before I had time to
be annoyed, I heard a crash from his study at the top of the house. I
ran upstairs and found him lying on the floor next to his desk. He
looked up at me with the radiant, witless smile of a baby. And he said:
“Da walls.”
The
ambulance took us to the local hospital where they said that my husband
had had cerebral accident – a stroke. The cause was probably years of
uncontrolled high blood pressure, about which no doctor had warned him.
They said he needed rest and reassurance. Unfortunately, because of the
so-called efficiency savings introduced by John Major’s government,
there was a shortage of beds and of nurses in all London hospitals. I
was so grateful when they found a bed for him in a geriatric ward later
in the day that I didn’t at first notice how filthy it was and how hot.
The floor was covered in urine, blood and dust balls. (Later I brought
in a mop to clean around John’s bed.) The plateglass window could not be
opened: to prevent suicides, a passing nurse told me.
It
was a week before I managed to track down the doctor whose name was
printed on a grimy card at the head of John’s bed. The doctor informed
me that my husband’s case was hopeless. He would never walk again and
must never be allowed to try to stand because the hospital insurance
wouldn’t cover a fall. Physiotherapy, which the doctor considered “about
as useful as peanut butter”, was out of the question.
You
learn fast in an emergency. John had had an ischaemic stroke, which is a
blockage in one of the arteries that carries blood to the brain,
resulting in the death of brain tissue. It was in his left brain, which
controls the right limbs and, in most people, the processing of
language. About 75% of people will survive a first stroke. But it is
essential to get them up and standing as soon as possible, and paralysed
limbs should be moved to prevent the muscles from seizing up
permanently. Visiting family and friends were happy to help, moving
John’s arms and legs while they sat with him.
John greeted everyone with those two meaningless syllables, da walls. He
also used the same sounds to ask them questions about themselves:
“Walls? Da walls?” He chatted away in his usual sociable manner with his
fellow patients, and even charmed the few overworked nurses. The rise
and fall, the rhythms and pitch of his voice were so normal that those
of us who knew him well understood at least the gist of what he was not
saying.
Since he could read, we assumed he could also write; he was after all a writer.
We gave him a piece of paper and a ballpoint pen, which he seized in
his good left hand, and, on the top left corner of the page he wrote the
letter “f” and then gave up. John had what is called expressive
aphasia. Although he could tell that we didn’t understand him, it felt
to him as though he was translating his thoughts as effectively and
comprehensibly as ever into words. I was only one of the many people who
had a recurring dream that John had suddenly started to talk normally.
As one friend said, it was as if he were under a magic spell and, like
all magic spells, it would be lifted as suddenly as it came on.
The
neurologists and clinicians who specialise in stroke talk a lot about
pathways. There are the pathways of neurons and synapses that are
interrupted by a clot or haemorrhage, pathways from the onset of
symptoms to hospital. Although the consequences of a stroke do not
necessarily get worse over time, the pathway to recovery is problematic,
as I was to discover. My own pathway towards an understanding of what
stroke is and does, and how it can be addressed, began in that unclean
geriatric ward where the doctor condemned his stroke patients to live
diminished lives.
My concern at the time was
to escape from that hospital to a place that would help my husband. The
Wolfson neurorehabilitation centre at Atkinson Morley hospital in
Wimbledon, which had an excellent reputation for stroke rehabilitation,
did not admit patients over 65 on the NHS. They would, however, accept
John privately – at a price that would have meant selling our house.
With some difficulty, I found a bed in a hospital at the other end of
London. It was at least clean. And although there was no physiotherapy
available, the nurses, immediately on John’s arrival, got him up on his
feet and limping, with their support, up and down the ward. All too soon
they informed me that they would have to discharge him.
Then
I found that John’s service in the second world war entitled him to a
place in the Royal Star & Garter for Disabled Sailors, Soldiers and
Airmen. A large and handsome building, overlooking the Thames from the
brow of Richmond Hill, it had been purpose built for the care and
rehabilitation of servicemen and women disabled in the first world war.
(It has now, perhaps inevitably, been converted into luxury flats.) It
was staffed by neurophysiotherapists, occupational therapists and a
speech therapist. The physios worked on restoring not just movement of
the affected limbs but movement that was as normal as possible. The
physios walked him through parallel bars, guiding his bad leg into a
correct position with their hands, running their hands up his spine to
remind him to stand up straight. They got him to put his full weight on
one leg while swinging the other. They made him do squats, holding his
limp arm stretched forward with his good one.
When
John came home at Easter after six months of intensive physiotherapy,
he was able to dress himself and care for his personal needs. He was
still limping but he was so much stronger that he walked around the
house without a stick and climbed the stairs to his study. He was,
however, liable to trip and fall because he had no control over his
right foot. Then I heard, only by chance, that a rigid brace fitted on
his foot underneath the shoe would solve that problem. Now he began to
take himself on ever longer walks around the neighbourhood, chatting in
those meaningless syllables with the neighbours, making new friends in
the pub. We travelled, to Italy and farther afield.
Six
months after the stroke, John’s vocabulary had not changed, and I was
determined to find out how he might recover his use of language. The
speech therapist at the Star & Garter had quickly given up on John:
“You will never again have a conversation with your husband.” Her
patronising pronouncement filled me with an energising rage that set me
on a new pathway: to find out as much as I could about aphasia, and to
prove her wrong about John’s case. My instinct as a journalist was to
seek out expert specialists in the field; and I was not surprised to
discover that the more experienced they were, the less likely they were
to make predictions about John’s, or anyone else’s, chances of recovery.
The people who know most about the way the brain works know that it is
terra incognita.
I
found two speech therapists, Jane Marshall and Eirian Jones. Watching
them work with John taught me so much about language, and what the loss
of it tells us about normal language, that I began to plan a book about
the condition (which is better known as dysphasia, rather than aphasia,
because it is rare that all the elements of language are lost). I will
mention here only one of Jones’s many discoveries about John’s
particular case because it explains the mystery of the way he unloaded
the dishwasher on the morning of his stroke. Jones’s theory was that
John had lost the ability to “disambiguate” the various different
contents of the dishwasher. And in the same way he could no longer
unravel the elements of a sentence. So although John could write
individual words, matching the correct word to a picture or filling in
the missing word in a story, he had, as Jones put it, no idea of what a
sentence was.
On 13 September 1998, six years
after the stroke, there was a stupendous breakthrough. John indicated to
me that he wanted to write a thank you note to a friend who had given
us lunch in his office. He got out one of his correspondence cards
headed Professor Sir John Hale, and on it he wrote: “Dear David”. I
said, Fine, now what is the expression of gratitude you need? John
wrote: “Thanks you for lunch.” I said: Do you want to say where? John
wrote: “in your office”. When? “On Thursday.” Then he wrote without
prompting: “I have”. And I stupidly said, now you need either a verb or a
noun. But he wrote “certainly” and laughed and finished the letter by
himself: “been in luck! Yours ever, John.”
I
telephoned Eirian with the news. She was pleased but reminded me that it
wasn’t quite the breakthrough I had initially thought – I had, in fact,
guided John.
I went to the US to research my
book on dysphasia. Back home I told John about all the people I had
interviewed, one of them being Alfonso Caramazza, a professor of
cognitive neuroscience at Harvard. On 9 August 1999, I went out
shopping. When I returned I found on John’s desk a scrap of paper on
which he had written:
Dear Caramagne,
I will thanks you for agreeing to advice Sheila to carre on.
With best,
John Hale
Next to the draft was one of his correspondence cards on which he had written (note the style, one professor to another):
Dear Caramazza,
I will thank you for agreeing to advise Sheila to carry on.
With best,
John Hale
Nobody was with him. Nobody prompted
or guided him or even suggested he write to Caramazza, about whom I
hadn’t spoken for over a month.
I will never
know how much more John would have written, because on the morning of 12
August he died peacefully in his sleep next to me in bed.
My
book, The Man Who Lost His Language, was published in 2003. For the
third edition in 2006, the publisher asked for a new chapter about any
recent changes in stroke care. All my contacts led me straight to one
man: Dr Tony Rudd, consultant stroke physician at St Thomas’ hospital in
central London. Rudd was better known in medical and government circles
as “Dr Stroke” for his tireless campaigning to get the message across
that stroke, like heart attack, is both a medical emergency and a
treatable illness.
I asked him what changes he
had seen in the 14 years since John’s stroke. “There has been more
progress with stroke than with any other illness,” he said. “But we
started from nothing. And there are still black holes.” The failure to
treat stroke properly from day one continued to be a massive waste of
public money. Without treatment, the survivors will be a burden on the
NHS and the welfare budget. It is not only they who will remain helpless
and unproductive. Their carers, usually unpaid younger relatives, will
also be unable to work.
But lassitude was
giving way to excitement with the development of techniques which
restore the flow of blood to the brain (known as reperfusion), in time
to limit much of the damage caused by ischaemic stroke. Rudd had begun a
programme of injecting suitable patients with a clot-busting drug. The
technique, thrombolysis, is by no means suitable for every stroke. And
because brain cells die in their millions during a stroke, treatment
should be delivered as soon as possible, preferably within four hours.
Thrombolysis was first used in the UK in the 1990s. Rudd’s hospital was
the first that was equipped to deliver it to all suitable patients.
A
cheerful young Scottish nurse told me that whereas stroke used to be
“the dead end of nursing”, the opportunity to give quality care to
people who might otherwise have died or been permanently disabled was so
rewarding that she had decided to devote her career to caring for
stroke patients.
I went away that day daring
to hope that stroke treatment, which was underserved by an underfunded,
over-bureaucratised health system, might receive the attention it
deserved. In 2010, following recommendations by Lord Ara Darzi, eight
specialised services for stroke treatment, known as Hyper Acute Stroke
Units, were established across London. Six years later, St George’s
hospital in Tooting, south London, was the first of them to perform
thrombectomy, which mechanically removes clots too big to respond to
clot-busting drugs. This continues to be the most effective procedure
and allows almost half of those treated to return to their normal life
within 90 days.
At
11:10am on Sunday 21 November 2021 I had a telephone call from my
daughter-in-law Amanda. My son Jay, who was then 55, had fallen out of
bed earlier that morning. Amanda knew it was a stroke because Jay had
inherited his father’s high blood pressure, along with his insouciance
about his health. She rang 999 only to be told that there would be no
ambulance for four hours. A kind neighbour who is, as it happened, a
doctor drove them through red lights to the nearest stroke unit. Amanda
was informed that Jay was not a suitable candidate for reperfusion
because the stroke had happened in his sleep and they couldn’t therefore
determine whether too much time had elapsed for treatment to be
effective. This was incorrect. Since Jay went to sleep at 11pm and
reached the unit by 4:30am he was in good time. No doubt the hospital
was overwhelmed by Covid. What happened afterwards, however, was less
forgivable; nor, alas, is it an isolated case.
Jay
was given a bed in a dedicated stroke ward. It was immaculately clean.
(The lesson of the MRSA epidemics in dirty wards had been learned.) His
was a right-brain stroke paralysing his left arm and leg and affecting
his left field of vision, but sparing his language. The consultants who
visited him in the ward predicted, presumably on the evidence of a brain
scan, that he was unlikely to walk again. Although Jay was fully
conscious and able to speak normally, the consultants also informed him
that he would never work again. He must under no circumstances be
permitted to stand up without the help of physiotherapists, who were
scarce and clocked off at 4pm. The hospital insurance wouldn’t cover a
fall and private physiotherapy was not permitted.
Without
the support of his family and many friends Jay might well have given in
to the despair that afflicts so many stroke survivors. He couldn’t
believe what had happened to him. But he was also determined to prove
that the doctors were mistaken.
Unlike his
father all those years ago, Jay was allowed small doses of physio and
occupational therapy every now and then. When they had time, the physios
put him on a reclining static bicycle which he enjoyed because he had
always been a keen cyclist, and which encouraged him to move the bad leg
by pumping with the good one. After a few weeks, he charmed two of the
physios into helping him to stand up and take a step, then two steps,
then walk the length of the ward.
When Jay was
discharged after four months in hospital he mostly used a wheelchair,
although he was able to walk around the house with a four-legged stick.
He had been warned by the hospital that he must never, ever rely on a
single stick.
Amanda enrolled him in a private
rehabilitation practice in west London run by a renowned
physiotherapist named Richard Sealy. Sealy asked Jay what he wanted most
to achieve, and when Jay said he wanted to walk without a stick Sealy
said: “Well then do it.” Jay took a few steps. In 25 years of practice
Sealey has treated 4,000 patients, including the journalist Andrew Marr
after his stroke. Over the next 18 months, I watched this charming and
dedicated man and his team of neurophysios and occupational therapists
working with Jay to reconnect the pathways between the motor cortex of
his right brain with his left leg and arm.
First,
they got him to walk chest forward and head up – with, and then
without, a stick. They tried to play football as a way of encouraging an
instinct to kick. He tried to put weight and balance on his bad leg and
kicking with the good one; or, and this was much harder, balance on the
good leg and kick with the bad one. He did one-legged squats. He used a
pilates reformer and walked on a treadmill. They timed him as he walked
as fast as he could around the building, each time beating his previous
record. In an attempt to wake up his left hand and arm they clasped the
hand around his precious phone, hoping to trigger the instinctive grasp
to stop it dropping. They tried video games played with his left hand.
By
no means everybody could afford Sealy’s fees (£110 for 45 minutes).
Sealy regrets leaving the NHS, where he was trained and which he says
still provides the best training for physiotherapists in the world. If
there is a shortage of neurotherapists in the NHS, he said, the reason
they leave is less about pay than about the long hours of intensive
therapy they are not allowed to provide.
I remain haunted by the people who miss out on precious rehab. Each one of 1.3 million stroke survivors in the UK has a story. Last year there were 111,137 stroke admissions to NHS hospitals, a rise of 28% in 10 years, and this figure is expected to rise
dramatically. Meanwhile, 39% of stroke patients are abandoned by the
NHS after six months. A third remain too disabled to work, many because
they believed, or had no choice but to believe, the doctors who wrote
off their chances of recovery. The population of stroke survivors is as
big as that of a large city, and it’s getting bigger. More than half are
left with a disability and about a third are unable to live
independently.
Nor, as many young people like
to imagine, is stroke a faraway illness that happens in the never-never
land of old age. A quarter of people who experience strokes are under
the age of 65. And in the past 10 years there has been a 55% increase in
strokes among people, like my son Jay, in their 50s, which is the
highest increase among any age group. The reasons may be bad diet –
ultra processed food and especially sugary drinks, which are as
dangerous as smoking – and uncontrolled blood pressure. The poorest
members of society suffer strokes seven years earlier than the better
off. Some are small strokes. They may recover spontaneously in a few
weeks but even small strokes may be warnings of worse to come. Many will
have lost the use of an arm and a leg, a field of vision, the
production or comprehension of language. They might suffer from apraxia,
an inability to sequence movements in the order it requires to perform
everyday tasks. Some will find it difficult to recognise what they see,
touch, hear or taste, an impairment of sensory processing known as
agnosia. Visual agnosia was made famous by Oliver Sacks in his classic
book The Man Who Mistook His Wife for a Hat.
Others will suffer from anosognosia, a denial of their own symptoms.
Every stroke is different and every brain has been conditioned by a
unique set of experiences.
There
is no humane sense in withholding the treatments that would allow them
to return to independent lives. For those who need an economic
justification, a 10-year study published in 2016 and led by Prof Lynne
Turner-Stokes at King’s College hospital has demonstrated that intensive
therapy for all neurological illnesses saves the cost of long term care
and improves the rate of productivity. This is why the National
Institute for Clinical Excellence (Nice) now recommends a minimum of
three hours of intensive therapy at least five days a week. Yet at
present, most NHS stroke units provide two or three hours of
physiotherapy a week, with a six-month time-limit. Nick Ward, consultant
neurologist at the National Hospital for Neurology and Neurosurgery in
Queen Square, London, an ardent defender of rehabilitation after stroke,
described this as “a homeopathic dose, not worth the cost”.
Why
does the UK waste lives and taxpayers’ money by condemning stroke
survivors to dependent, unproductive lives? Three and a half years after
his stroke, my son is a living example of what can be achieved by
physiotherapy, and why it is so important that more people have access
to it. The hole in his brain is much bigger than it would have been if
he had been treated on arrival at the stroke unit, instead of being told
he was not eligible. Nevertheless, thanks to intensive
neurophysiotherapy, Jay now climbs up and down two flights of stairs to
their bedroom at the top of the house. He dresses and washes himself,
walks around the house without a stick, around London with only a single
stick, gets on and off buses and trains. He has returned to teaching
mathematics, five days a week, at the school where he worked before the
stroke. He swims at the local gym, where he has taught the personal
trainer some of the techniques of neurophysiotherapy. Not only does he
lead an independent and productive life, he is still, three and a half
years post-stroke, getting better.
