CRPD/C/17/D/27/2015
fund an upright magnetic resonance imaging (MRI) scan in London, since such a scan was
not available in Wales. In January 2010, the author met with a neurologist in London, who
recommended an additional MRI scan using fast imaging employing steady-state
acquisition sequencing for cerebrospinal fluid leak detection, as well as further diagnostic
tests. The Board refused to fund further diagnostic testing and rejected the author’s request
for specialist National Health Service care in London. It was only after the author and her
family appealed to their local Member of Parliament that the Board, in April 2010, gave
permission for further tests in London. The author was nonetheless placed on a National
Health Service waiting list for seven months. The author claims that consequently her
access to post-surgical treatment was delayed by the Board.
2.5
In July 2010, the author’s general practitioner noted that the author’s health was
deteriorating and that she was suffering from nystagmus. On 20 July 2010, an urgent
private appointment was made with a neurologist at the National Hospital for Neurology
and Neurosurgery, who recommended that the author be admitted to the hospital for further
diagnostic tests. However, on 6 August 2010, the Cardiff and Vale University Health Board
refused to fund any further private or National Health Service inpatient or outpatient
medical care at the National Hospital. The author’s mother contacted the Board regarding
the decision and was advised that the author could make an application to the individual
request for treatment panel for the authorization of funding for private medical care at the
National Hospital in London. The author made such a request, which was rejected by the
panel on 14 September 2010, as the panel noted that it had received reassurance from the
author’s general practitioner that the author’s health was not deteriorating. The author
contacted her general practitioner regarding this information and the general practitioner in
turn informed her that he had not provided any such reassurance to the panel. The author
contacted the panel, which, on 30 September 2010, granted the author two private inpatient
admissions to the National Hospital. The author claims that at that point the Board had
delayed her treatment by 14 months, despite her deteriorating health and the severe pain she
was suffering.
2.6
The author was admitted to the National Hospital for Neurology and Neurosurgery
on 1 November 2010 under the care of a neurologist. The author claims that she was
initially diagnosed with medication overuse headache, despite the fact that she took very
little medication. The author further claims that her medical history was overlooked and
that a previous diagnosis of arachnoiditis1 was denied. An intracranial pressure bolt was
inserted into the author’s skull to monitor cerebrospinal fluid pressure, which revealed an
abnormally low intracranial pressure with high cerebrospinal fluid pulsations. The author
claims these results were not fully understood by the treating neurosurgeon and neurologist.
An epidural blood patch test was administered, as a small cerebrospinal fluid leak had been
identified. The author claims that she was discharged from the National Hospital without a
definitive diagnosis and no relief for her symptoms, which included seizure-like tremors
and incapacitating head and upper cervical spine pain. The author was also scheduled to
undergo a lumbar infusion study, but had to wait until January 2012 for testing equipment
to arrive from Sweden. She claims that for the whole year of 2011 she was left without a
treating consultant while suffering from severe pain. The Cardiff and Vale University
Health Board refused to grant additional admission to the National Hospital during 2011 as
it had limited the number of consultations to a maximum of two, although the author’s
health was deteriorating.
2.7
On 4 January 2012, the author was again admitted to the National Hospital for
Neurology and Neurosurgery for her second private admission and underwent the lumbar
infusion study to monitor cerebrospinal fluid pressure, outflow resistance and cerebrospinal
fluid production rates. The testing significantly increased the author’s brain and upper
cervical spine pain, resulting in the test being abandoned after four hours, although it was
initially intended to run for four to five days. No medical explanation for the pain was given
and the author was discharged on 14 February 2012, without a clear diagnosis and without
1
The author indicates that arachnoiditis is a chronic inflammatory reaction of the arachnoid matter,
which is one of the three membranes that protect the brain and spinal cord.
3