CRPD/C/17/D/27/2015
entitled to a post-surgical diagnosis and medical treatment before submitting evidence for
her claim.
2.13 In July 2013, the author reported the situation to the General Medical Council,
submitting that several consultants who had treated her in the period 2007-2012 had been
negligent in their care. The Council found that the consultants in reference had not been
negligent.
2.14 In 2013 and 2014 the author continued to have incapacitating upper cervical spine
and head pain, causing her to be in full-time need of a wheelchair. She attempted to seek
treatment in the United Kingdom for her condition, but no treatment was available. In
September 2014, the author underwent a brain and spine scan at the National Magnetic
Resonance Research Center in Ankara, which revealed cerebrospinal fluid hydrodynamics
dysfunction. In November 2014, the author consulted with a professor and neurosurgeon in
the United States; the professor noted that the author suffered from several cerebrospinal
fluid hydrodynamic related disorders, including Tarlov cysts at every level of the spinal
canal, a large pseudomeningocele in the lumbosacral spine, pseudotumor cerebri and
weakening of the meningeal connective tissue interaction between nerves, the nerve roots
and the arachnoid of the exiting neural foramina. The professor advised that initial
diagnostic testing should include a contrast-enhanced venogram to monitor stenosis of the
dural venuous sinuses, and spine and brain intracranial pressure monitoring in order to
assess the cerebrospinal fluid hydrodynamic system.
2.15 At the time of the submission of her communication to the Committee, it had taken
the author seven years to find a consultant able to address her medical condition. She
claims that she has been unable to obtain adequate medical care or a definite diagnosis in
the State party. She requests the Committee to order 19 remedies from the State party,
which include: to take immediate action in granting the author the medical funds needed to
access an international specialist neurosurgeon of her choice; to ensure that funds needed to
cover ongoing treatment and rehabilitation costs are secured for the future; to enforce
accountability for negligent practices within the health-care setting; to make the reporting
of iatrogenic illness mandatory; to ensure that the State party advances the art and science
of clinical research and training within the field of cerebrospinal fluid hydrodynamics and
its associated rare disorders; to advance professional and public awareness and education of
the aetiology, treatment, prognosis and management of cerebrospinal fluid hydrodynamics
disorders; to advance professional and public awareness and education of the aetiology,
treatment, prognosis and management of arachnoiditis; to promote treatment for acute
phase arachnoiditis to control neuropathic pain; to ensure that National Health Service
organizations are both neutral and ethical in their decision-making process; to ensure that
the State party reforms the General Medical Council, abolishes self-regulation and
introduces regular assessments of the competence of medical professionals; to ensure that
patients receive comprehensive information prior to providing their informed consent to
undergo invasive spinal procedures, including the possibility of developing arachnoiditis
and a cerebrospinal fluid hydrodynamics disturbance; and to ensure a review of the role and
efficacy of the State party’s medico-legal expert witnesses.
The complaint
3.1
The author claims that her rights under article 5 of the Convention have been
violated by the State party. She claims that she has not received equal protection and equal
benefit of the law and that she has been subjected to continuous discrimination for seven
years. She claims that her needs as a disabled person with multiple rare neurological
disorders have not been met and that she has continuously faced hostility and
insurmountable obstacles in her efforts to obtain treatment. She argues that she has
systematically been denied medical consultants by the authorities of the State party, and
that she has therefore been subjected to discrimination. The author further claims that she
was denied post-operative care and specialist medical treatment following a rare surgical
complication that caused multiple rare disorders, all of which resulted in her being left with
complex neurological symptoms that remain untreated. The author also argues that it is
discriminatory to force her to seek medical care abroad while she is seriously ill and
without funds.
5