CRPD/C/17/D/27/2015
requests are specifically intended for exceptional cases and to weigh up difficult
considerations in deciding whether to fund treatment not available on the National Health
Service. The State party further notes that the process is subject to appeal and judicial
review.
4.7
The State party also argues that should the Committee find that the author’s claims
are related to discrimination based on disability, rather than health care as it affects all State
party citizens, then domestic remedies have not been exhausted, as the author has failed to
file a claim under the State party’s Equality Act of 2010, which specifically prohibits
discrimination by public bodies on the basis of disability, or under the Human Rights Act of
1998.
4.8
The State party further notes that, as to the author’s complaints to the General
Medical Council, those proceedings were still pending at the time of the State party’s
submission of its observations on the admissibility of the communication.
Author’s comments on the State party’s submission
5.1
On 23 August 2015, the author submitted her comments on the State party’s
observations. The author challenges the State party’s observation that her communication is
manifestly ill-founded or not sufficiently substantiated. She maintains that she has provided
reliable evidence that the State party has continuously violated her human rights and access
to specialist medical care. She contests the State party’s argument that her condition is
difficult to diagnose and treat, as her efforts to obtain a diagnosis have been successful
when she has reached out to specialist consultants outside the State party. She further
challenges the State party’s observation that she has received extensive treatment under the
National Health Service and notes that despite undergoing two surgical procedures to repair
the damage to the spinal cord membranes, she has not recovered neurologically and her
health has continued to deteriorate. In addition, she claims that her post-surgical head and
upper cervical spine symptoms have not been understood by consultants in the State party
and that no further diagnostic testing or treatment was offered after conventional diagnostic
testing failed and that she consequently has been abandoned and isolated in her illness
while her health has continued to deteriorate.
5.2
Concerning the State party’s observation that it is not the Committee’s role to
replace the domestic authorities in the assessment of the facts, the author asserts that she
requires the Committee’s assistance, as the State party has violated her right to receive
relevant information about her medical condition and has denied her legal redress and
support.
5.3
The author maintains that she has exhausted all available domestic remedies. She
argues that applying for funding by way of an individual patient funding request is not an
effective remedy, as the panel would simply find that conditions for funding are not met.
She notes that she is willing to make such an application if it is considered necessary in
order to exhaust domestic remedies. However, she argues that even in the unlikely event
that such an application were to be approved, it would still place an undue financial burden
on her and her family as, in most circumstances, travel and accommodation costs are not
reimbursed under this mechanism. Furthermore, she notes that the only time she has
successfully used the individual patient funding request procedure, when she applied for
funding in order to access private health-care in London, the process took 14 months of
stifling bureaucracy before the request was approved and that, consequently, if she were
required to submit another individual patient funding request application her waiting time
for a definitive diagnosis and treatment would be further extended, exceeding an acceptable
period of time. The author states that she did not consult health-care providers in the State
party after November 2014, as when she was actively seeking specialist medical care there,
the consultants she visited failed to identify and diagnose her post-surgical illness and
prevent it from worsening and developing into multiple rare neurological diseases. The
author asserts that she did not bring a claim under the 1998 Human Rights Act because,
after seeking legal advice from an advocacy group, she was informed, on 22 August 2013,
that there was no right to medical treatment under the Act. The author also notes that the
General Medical Council reached a final decision on 21 May 2015 regarding her
complaints against her treating consultants in the State party. The Council concluded that
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