CRPD/C/17/D/27/2015
a treatment plan. Consequently, the author was compelled to seek medical care abroad, as
she felt she had been denied a definitive diagnosis and treatment in the State party.
2.8
In February 2012, the author travelled to the United States of America in order to
consult with a specialist on arachnoiditis, who diagnosed her with extensive adhesive
arachnoiditis of the lumbar spine. The author contends that, in the opinion of the expert, the
attempts made to discover the origins of her pain and complex symptoms in the United
Kingdom had been “futile”. The specialist also observed that the upper portion of the
author’s parietal lobe was damaged and that a small portion of it was missing. The author
claims that this was caused by the insertion and removal of the intracranial pressure bolt in
2010 at the National Hospital for Neurology and Neurosurgery in London and that this
brain injury had not been disclosed to her while she was a patient there. In March 2012, the
author also met with a cerebrospinal fluid specialist in the United States, who diagnosed her
with high cerebrospinal fluid pressure, in contradiction with the results from the hospital in
London, which the expert considered to be unreliable, and prescribed medication to the
author in order to reduce the pressure.
2.9
Due to financial constraints, the author and her family had to return to the United
Kingdom and attempt to resume her treatment there. However, attempts to obtain a
definitive diagnosis or a treatment were in vain, and the author had to travel to Germany in
September 2012 to obtain treatment there from a specialist in lumbar subarachnoid
endoscopy. On 25 September 2012, the author applied to the Cardiff and Vale University
Health Board individual patient funding request panel for European Economic Area S2
funding to cover the treatment costs in Germany. On 1 October 2012, the author and her
family met with the specialist in Germany for a consultation. The specialist was able to
provide the author with a partial diagnosis identifying ubiquitous leptomeningitis, including
arachnoiditis and aseptic meningitis, and also secondary tethered spinal cord syndrome. The
existence of a substantial and continuous widening of the subarachnoid space due to an
abnormally high cerebrospinal fluid pressure was also noted. The specialist indicated that
the author was in need of three complex spinal procedures over a three-week period, which
included the removal of internal lumbar fixators, endoscopic verification and a release of
the tethered spinal cord as well as the reduction of cerebral spinal fluid pressure. The three
spinal procedures were carried out in Germany; however, the specialist was unable to offer
the author a full diagnosis and treatment for her upper cervical spine and head pain
symptoms.
2.10 On 15 January 2013, the author’s S2 application was rejected by the individual
patient funding request panel, which argued that approval for funding had not been sought
from the panel prior to the beginning of treatment in Germany. On 20 February 2013, the
author requested the panel to review its decision; nevertheless, in March 2013, the author’s
review request was dismissed.
2.11 On 17 June 2013, the author lodged a request for judicial review of the decision of
the individual patient funding request panel before the Cardiff High Court. The request for
judicial review was granted. However, on 19 December 2013, the High Court dismissed the
author’s claim, finding that the panel decision was not unlawful.
2.12 On 18 July 2013, the author lodged a separate complaint before the Cardiff County
Court claiming clinical negligence due to complications suffered after the 2007 surgery. In
the proceedings before the County Court, the author commissioned a medico-legal report. It
was noted in the report submitted to the author that the author seemed to have suffered a
well-recognized complication of surgery and that no breach of care could be found, that
some of her symptoms were typical of non-organic findings, and that there were
psychological issues in the case that were of particular importance. The author contested
the report, pointing out evidence from her consultations abroad and to what she saw as
multiple errors in interpreting her medical reports. The author considers that the medicolegal expert’s opinion was inaccurate. On 14 October 2013, her application to stay the
proceedings indefinitely was dismissed and on 5 March 2014, her claim was struck out on
the ground that she had failed to submit any medical evidence of clinical negligence as
ordered by the court. The author claims that it was impossible for her to provide expert
evidence in support of the allegations of negligence as she had not received a definitive
diagnosis of her continued and deteriorating ill health. She further argues that she was
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