APPENDIX D
CASE STUDY ON EFFECTIVENESS AND ECONOMIC BENEFITS
OF MEDICAL TECHNOLOGY
Case Study 3—Julie's story` Misdiagnosis,
access to treatment and improved quality of life1
— Julie Fear suffered blackouts throughout
her life. After numerous tests and hospital visits as a child
she was diagnosed with temporal lobe epilepsy. This diagnosis
affected her quality of life: Julie felt she had no control or
choices in her life. Her performance in school deteriorated because
of her medication and she suffered from depression.
— While pregnant, Julie was in and
out of hospital with uncertainty about the survival of her baby.
Although Julie's child, Naomi, was healthy, she also had blackouts.
Naomi was diagnosed with REflex Anoxic Seizure (RAS), but Julie
did not connect this with her own condition. They learnt of a
support group for families of sufferers of RAS.
— Years later, Julie's husband suggested
that her diagnosis could be wrong: the support group, Syncope
Trust and Reflex anoxic Seizures (STARS) told her there was an
adult version of RAS, Reflex Syncope, and that sufferers had been
misdiagnosed with epilepsy. But when she visited the GP with this
information, she was laughed at, told to put her head between
her knees in case of an attack, to avoid stressful situations
and to stop her epilepsy medication.
— Following further communication with
STARS, Julie was referred to a specialist: after waiting 14 months
for a consultation and tests, she was diagnosed with VAso Vagal
syncope. Her consultant later suggested seeing a cardiologist;
STARS referred her to a specialist in Manchester, but to prevent
wasting more time they arranged a private appointment.
— Julie was fitted with a pacemaker
the size of a matchbox and was discharged the following day. She
has not had an attack since, and she says for the first time she
feels truly free.
1 STARS Newsletter, January 2005.
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