I met Jason and
Charlotte Maude in the summer of 1999, in the most unthinkable of
circumstances. Their three-year-old daughter, Isabel, lay close to
death in St Mary’s Hospital in Paddington, London, ravaged by a
flesh-eating bug that doctors in another hospital had failed to
spot. The symptoms had been attributed to chickenpox, from which
Isabel was also suffering. Charlotte described the horror of seeing
her daughter go into toxic shock and being given oxygen to keep her
alive; Jason told me, almost inaudibly, of his numbness as Isabel
was taken to St Mary’s under police escort.
The couple told their story not, unusually, because they wanted
to sue somebody for the ordeal that had befallen them (the Maudes
had asked for medical help several times during the previous three
days). They wanted to set up a safety net to spare children the pain
and danger faced by their daughter, now a happy, healthy
five-year-old. They envisaged a nationwide computer system that
would allow any doctor to tap a list of symptoms into a database and
get back a list of possible diagnoses. “There is so much medical
information available on the Internet and it seems crazy that
nothing has been developed for hospitals,” Jason told me at the
time.
I wondered whether their good intentions might evaporate as
Isabel settled back into normal life. Instead, they have taken the
first step towards realising their vision. Together with doctors, a
software company and generous donations from the City, the Maudes
have developed a software programme that will be the safety net that
Isabel never had. The software, called Isabel and in the advanced
stages of testing, is available free over the Internet to any bona
fide health worker (there is no public access). It will be launched
at a meeting of the Royal College of Paediatrics and Child Health
tomorrow by Dr Joseph Britto, a consultant in paediatric intensive
care at St Mary’s, who has been closely involved. Jason cannot
believe they are so close to achieving their aim: “It still seems
quite fantastical to me.”
The way the NHS is organised, Britto says, makes misdiagnoses
very possible. “It’s the inverted pyramid in the NHS,” he says.
“Potentially critically ill patients such as Isabel are seen by the
most junior doctors in A&E. In her case, they spotted the
chickenpox, then moved on. Despite the high fever and bluish
discoloration — the clear features of the flesh-eating bug
necrotising fasciitis — she was sent home. Two days later she had
multiple-system failure and needed aggressive resuscitation. It is
amazing she has come through this neurologically intact.
“During those long nights I spent in the corridor with Jason, he
kept saying that surely there’s a way of arming junior doctors with
more knowledge. It looked to me like something we could work on.” He
shared many sleepless nights with the Maudes as Isabel recovered,
and offered to work closely with them on the project. The three have
become firm friends — the Maudes named their third child Joseph
after Britto, who is his godfather. Isabel also has a younger
brother, Sam.
Tap a list of symptoms into Isabel and it will respond with a
list of plausible and relevant diagnoses of childhood conditions.
Where those on the frontline — often junior doctors pressed for time
— generally look for the usual, Isabel also catches the unusual. Not
only that, but it will give detailed descriptions and photographs.
This saves fumbling in medical files for guidelines on, for example,
what to do if a child has an epileptic fit, and gives guidance if a
doctor has never seen a particular condition before. The software
also provides an instant link to the British National Formulary, the
standard reference on medicines. In addition, medics can post
details of their own mistakes or experience, anonymously if they
prefer.
The software is not completely refined — the accuracy of
diagnosis is running at between 80-90 per cent — but tomorrow’s
presentation to the paediatric community should encourage other
doctors to try it. The software is on trial at four teaching
hospitals, including St Mary’s and Addenbrookes in Cambridge. These
trials are ensuring that the programme is returning sensible
diagnoses.
Poignantly, typing in Isabel’s symptoms turns up the suspect
bacterium thought to be responsible for necrotising fasciitis, which
ate away at her abdomen and pelvis. Isabel was saved by surgeons
cutting away the dead flesh; she will need six further operations
over the next two years to rebuild her abdomen and groin as she
matures.
She has blossomed into a charming, carefree child, seemingly
unaware of the trauma she faced or the project she inspired. When I
visited the Maudes at their London home, Isabel trotted downstairs
clutching Pee-Pee, a little cloth Peter Rabbit. The last time I saw
Pee-Pee, it was hanging from a ventilator in the intensive-care unit
at St Mary’s. Isabel bears well-hidden scars on her leg where skin
has been removed to graft on to her tummy, but they are nowhere near
as prominent as the normal grazes and bruises that are the battle
wounds of most toddlers.
“Isabel loves dressing up, especially as a nurse,” says
Charlotte, a former public relations executive. “She now wants to be
a nurse when she grows up. We keep gently suggesting ‘doctor’ but
she has firmly told us that doctors are men and nurses are women.”
Sometimes, Charlotte says, she feels as if Isabel’s brush with
death happened in a remote, parallel life. “Every so often I look
back and think ‘Did we really go through all that?’ We each recall
specific incidents, like waking up at 4am and being told pretty much
that we’d lost her. The doctors said they hadn’t felt a pulse for 45
minutes. We were told about possible brain damage. We had to wait
two weeks before we knew.”
Jason adds: “If I’m talking about it with someone, tears come to
my eyes. It’s a reflex inside you — you become very emotional.” The
couple find it almost impossible to put into words their gratitude
that Isabel survived. In some ways the experience encouraged them to
have Joseph. “When you go though something like this you realise how
fragile life is,” says Jason.
As head of global equity research at AXA, Jason used his City
connections to secure £90,000 in donations to set up the Isabel
Medical Charity. Autonomy Corporation has allowed the charity to use
its software for nothing (it would normally cost about £300,000, and
its head, Mike Lynch, is an Isabel trustee). Harcourt Health
Services, the medical publisher, gave permission for its paediatric
textbooks to be incorporated into the program. The Maudes put in
£34,000 that they received when the RAC club was demutualised. There
is a 30-strong editorial board of mainly paediatricians overseeing
the content of Isabel. The board features representatives from the
General Medical Council. All doctors and trustees are giving their
services free; the site has none of the advertising that litters
other medical databases.
The medical community’s response to Isabel has been “incredible,
unbelievable”, Britto says. He thinks such software should be used
widely throughout the health service and notes that 11 per cent of
patients suffer an “adverse event” while in hospital, such as an
incorrect dose of medicine or a misdiagnosis. It is no coincidence,
he says, that litigation is growing. Having an intelligent computer
program to refine or reinforce diagnoses might well become more
important to the NHS to avoid charges of negligence. Putting
computers in hospitals, where they could save lives, would also be
an ideal and practical way of realising the Government’s commitment
to online Britain.
Britto points out: “These errors cost the NHS a billion pounds a
year. We really need structures and systems to minimise them. I have
to be honest — when I have presented Isabel’s clinical features to
senior paediatricians, not all of them have thought of the more
uncommon complications of chickenpox.”
More dramatically, the Isabel system has already proved its
worth. Britto says: “We had an infant referred to us last week with
swelling in the neck and difficulty breathing. The child had
surgical emphysema, where air leaks out to below the skin.
“Afterwards, we found out that somebody, possibly the father, had
inserted his finger in the back of the child’s throat and caused a
tear in the larynx. This is a very unusual form of child abuse. Most
of us would have been hard-pressed to come up with this diagnosis.
“We used Isabel, and it came up with child abuse as one of
several possibilities. Had this been available at the bedside, it
would have had a huge impact, not just on that child, but other kids
from that home. That’s what makes this project so gratifying — it
can save so many children’s lives.”