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How doctors turned Julie into a
twitching, bloated wreck
(Filed: 16/11/2003)
Julie Eldred used to have a good job, a long-term
boyfriend and her own home. That was 17 years ago. Since then she
has been reduced to a twitching, bloated, semi-catatonic wreck by
prescription drugs, which numerous experts now say she should never
have been given.
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Julie Eldred was a bridesmaid at her sister's wedding
in 1986 |
What Julie, now 43, actually has is Asperger's
syndrome, a relatively mild form of autism that in her case was so
slight that she was able to live the first 26 years of her life with
few problems.
Asperger's is not a mental illness and cannot
normally be treated with drugs. Instead, people with the condition
require behavioural guidance in relating to a world they often find
difficult to understand.
When Julie first exhibited signs of anxiety, a common
symptom of Asperger's, and sought medical advice, she was said to be
suffering from everything from an attention-seeking disorder to
mental illness.
She was locked up and put on 32 different drugs -
which have ruined her health, led to her being repeatedly held in
secure psychiatric institutions and prompted her to make several
attempts to kill herself.
Doctors say that the side-effects of the different
drug treatments have given her tardive dyskinesia, a condition that
makes her jerk her limbs repetitively and grimace uncontrollably,
and catatonia, where she "freezes" while climbing the stairs, or
flushing the lavatory.
For years her 64-year-old mother Maureen tried, and
failed, to get Julie's National Health Service doctors to
acknowledge her Asperger's but was branded an "interfering"
parent.
Only recently has Julie's Asperger's syndrome finally
been acknowledged by her doctors, but they still insist on keeping
her medicated even though at least one expert said she could die as
a result.
In her home in Ruislip, north-west London, Mrs Eldred
recounts the story of her daughter's tragic life. She was born in
1960, the second of three children, to Mrs Eldred, a retired
secretary, and her husband Peter, a panel-beater who died two years
ago. Julie has an older sister, Sandra, 45, and a younger brother
Adam, 37, neither of whom has Asperger's.
"We always knew Julie was different," said Mrs
Eldred. "She was a quiet girl, the kind who sat at the back of the
class at school trying not to draw attention to herself.
"When she was 16 she left school and trained to
become a secretary. She got a job and proved herself to be a very
good worker because she was focused and accurate."
When Julie was 26, Mrs Eldred suggested to her that
she buy her own home with her sister. "With hindsight, that was the
start of the problems," she said. "Moving out made her anxious and
she went to her GP and he put her on benzodiazepines [a highly
addictive form of anti-anxiety drug]."
When the anxiety did not abate, she was referred to a
psychiatrist, who decided that she was an attention-seeker.
In a state of growing drug-fuelled confusion, Julie
made the first of several attempts to kill herself, stabbing herself
in the chest and neck with a pair of scissors, puncturing her lung
and windpipe. She was sectioned under the Mental Health Act and
locked in the secure ward of a hospital, where cocktails of drugs
were administered to her. Her 10-year relationship with her
boyfriend fell apart.
Julie's life took on a new pattern. Under medication,
she was like a zombie. Eventually she was released from the secure
institution and tried to take herself off the drugs, suffering
severe withdrawal symptoms. These were interpreted as a need for
more medication and she was re-sectioned and the cycle began
again.
Mrs Eldred agreed to sign documents permitting the
authorities to detain Julie for periods of six months or more only
after they threatened to take her to court to remove her authority
as next of kin.
Finally, in 1993, Mr and Mrs Eldred paid for a
psychiatrist to offer an independent opinion. He diagnosed
Asperger's syndrome and sent his report to Julie's doctor, who
disagreed with it.
Instead, three years later her former doctor wrote a
letter to other professionals saying that Julie's mother "continues
to interfere as she has done for many years" and had "sabotaged"
Julie's treatment.
Following a complaint by Mrs Eldred, the General
Medical Council warned the doctor that his language had been
"inappropriate and open to misinterpretation".
That did not stop the authorities from locking up
Julie. While being detained she was frequently kept in isolation,
forcibly restrained by staff and allegedly bullied and sexually
harassed by other patients. Her latest regimen of drugs has also
made her balloon from her normal weight of 8st to 15.5st.
During the past 10 years a succession of experts in
Asperger's have confirmed Julie's diagnosis and drawn attention to
the damage to her body and mind cause by the inappropriate drug
regimes.
In August 2000, Amitta Shah, a consultant clinical
psychologist, wrote in a report: "The current treatments, which
include anti-psychotic medication, intense observation, physical
restraint and seclusion for long periods, are all likely to
exacerbate Julie's difficulties and lead to deterioration in her
physical and mental health.
"She is showing serious side-effects, which include
tardive dyskinesia and other disorders of movement and volition . .
. and she is extremely vulnerable to developing full blown
catatonia, which can become irreversible and life threatening."
All Julie needed was a stable environment, gentle
support and interesting activities. This would best be provided
"outside a medical/psychiatric setting", Dr Shah said.
Prof John O'Grady said that Julie should be taken off
drugs that have "already more than likely caused her some harm and
which have been singularly without long-term benefit to her".
Mrs Eldred says that Julie - who is currently living
at her mother's home but could be sent back to a secure unit if she
tries to wean herself off the drugs she is still being prescribed -
cannot be left alone. "She was more independent at 16 than she is
now at 43 as a result of her many years of involvement with the
mental health system," she said.
"They acknowledge she has Asperger's but are saying
she also has a schizo-affective illness. The truth is that her other
problems are all caused by the drugs she has been given for 17
years.
"She has been ruined and it is the doctors who have
done it. I can't help hating them for it."
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