DESPITE the perception that polio
has been consigned to the UK’s history books many of its victims
are still living with the disease’s long-term legacy. Up to
120,000 of British polio survivors are suffering from a rare
condition which strikes long after the original illness.
Post-polio syndrome, a devastating neurological illness, occurs
in up to 80 per cent of people who developed polio and causes
chronic pain, fatigue and muscle weakness.
Yet despite its prevalence and impact (Parkinson’s disease
affects the same number of people) few GPs are aware of it and
many sufferers are misdiagnosed.
Pam Jones, chairman of the British Polio Fellowship, said: “The
tens of thousands who contracted polio in the epidemics of the
Fifties are still with us and are now facing years of crippling
pain and fatigue without any medical support due to shockingly
low awareness of this syndrome among health professionals.”
Professor Carolyn Young, consultant neurologist at the Walton
Centre for Neurology and Neurosurgery in Liverpool and a leading
expert on the condition, said: “Those with post-polio syndrome
are faced with a lack of knowledge and understanding of their
condition from health professionals. The medical community has
no real understanding of it, either of its true effects or how
to effectively manage it.”
This month Britain’s forgotten polio community are being given
new hope by a groundbreaking research project into the long-term
effects of post-polio syndrome which is aimed at providing GPs
with vital information on the true impact of the condition as
well as ways of treating it.
Polio is a highly infectious virus that spreads from the
intestines and attacks the brain, spinal cord and breathing
Widespread immunisation, introduced in 1955, has slowly
eradicated the disease here, although it continues to claim
victims in areas of Africa and Asia. Travellers are urged to get
revaccinated if they visit affected areas as they are still
vulnerable to the virus.
Until inoculation against polio was introduced in Britain, up to
4,000 people a year caught the virus. Kathy Gibson, 63, from
Cullompton, Devon, has been diagnosed with post-polio syndrome
after several years of fatigue and pain in her arms and legs.
“I was diagnosed with it two years ago. It was when the pain
started in my legs that I knew something was wrong as I have
never had any sensation in them at all since contracting polio,”
Kathy, a mother of two, had developed polio when she was four
and despite undergoing intensive physiotherapy never regained
the use of her legs. “I vividly remember the day I contracted
“I was playing in the street with all the other children in
Townhill in Swansea, when I dropped my little plastic dolly down
a drain. I started crying so one of the older boys fished it out
from the metal grate for me.
“I stopped crying and put the doll in my mouth. I started to
feel fluey that same day and by the time I woke up in the
morning I was unable to walk. It was that immediate.”
Kathy was rushed to an isolation hospital where she stayed for
nine months. Her mother’s visits were restricted to her standing
on a step outside the window. “The doctors thought I wouldn’t
survive and believed it was worse for a mother to see her child
if the child was going to die.” Tragically, shortly after her
return home Kathy’s mother died of throat cancer and she and her
sister were sent to children’s homes.
Despite being wheelchair-bound Kathy has enjoyed an active life
including “wheelchair dancing” but the effects of post-polio
syndrome have made it very hard for her to stay that way.
“I feel very alone, there’s very little advice or support out
there,” she said.
Robbie Johns, 59, a retired company director from Ipswich
contracted polio when he was two. “My mother had taken me to see
my grandmother in Newcastle and we inadvertently travelled
through a polio epidemic area.
“Initially the GP thought I had flu. It was not until I fell
over at home, hitting my head badly, that the hospital noticed
that my co-ordination had gone. I was paralysed. That’s when I
was diagnosed. I was in isolation for seven months. One side of
my body completely atrophied and the other was weakened. As I
grew older I walked with a limp but I was OK. I was able to do
activities like play golf.
“As time passed I all but forgot about the polio. I developed a
successful career, got married and had three children. It was in
my 40s that I started falling over, my legs became unstable and
would simply give way. My GP recommended leg exercises and sent
me to the gym. I was doing 10 miles uphill on the treadmill
three times a week.
“It didn’t help and in fact the fatigue, muscle pain and lack of
stamina continued. After a year of that exercise regime I could
Eventually he saw a physiotherapist who specialised in polio and
diagnosed post-polio syndrome. “By 1997 my physical condition
had deteriorated severely. I was falling down at work and losing
my confidence in my ability to walk unaided.
“My GP had no experience, no training and no knowledge of this.
Even the NHS physiotherapists gave me a set of exercises that
were counterproductive. If I had been properly diagnosed in the
first place my GP wouldn’t have prescribed the excessive
exercise that he did, which caused increased muscle wastage.
“If it wasn’t for that I might well have been in a much better
physical condition today. I just wish I had known about this
“The wrong diagnosis can do so much harm to what’s already a
very hard condition to deal with.”