NICE JR: David v
Goliath.
Douglas
Fraser & Kevin Short
Although there has been no
official release of papers as yet, two important documents
relating to the Judicial Review are now on the internet. This
is a welcome development; the more information released about
this important case the better.
The case against NICE was
grounded on three main issues, and was brought by two parties.
Fraser and Short, represented by their barrister Jeremy Hyam,
argued (1) that CFS/ME guideline CG53 was irrational, because
it was founded on insufficient evidence, and (2) that the
composition of the Guideline Development Group was biased, and
the professional members were predisposed to recommend CBT
& GET.
Additionally an Interested
Party represented by Conrad Hallin, a barrister acting pro bono, argued (3) that NICE had not properly costed the
introduction of CBT & GET, as they were bound to do. Mr.
Hyam did not pursue the economic aspect, but members of the
Fraser/Short team did provide costing data to Mr. Hallin,
which he duly acknowledged.
In his judgement, now in the
public domain, Mr. Justice Simon summarised the three grounds
for challenge, all of which he rejected. Members of the ME
community can read details of the arguments in this prime
source. Patients may have their own views on whether the
charges against NICE were well founded.
Also in the public domain now is
a Witness Statement by Stephen Hocking, solicitor at
Beachcrofts, the legal firm appointed by NICE to defend them.
There is some suggestion that the appearance of all or part of
this document may constitute contempt of Court, and it is not
clear whether it will remain on the web. As it stands, it
provides useful insight into the issue of Guideline
Development Group bias as summarised by the Fraser/Short
solicitor Jamie Beagent, and as rebutted by NICE.
Most challenges to NICE are
brought by patient charities, backed by pharmaceutical
companies with deep pockets. The JR on the CFS/ME guideline
was unique, in that it was brought by two individual patients,
funded partly by themselves and their supporters, and partly
by Legal Aid. With limited funds at their disposal, for
patients this was always going to be a David & Goliath
contest against a government department like NICE. And so it
proved to be.
NICE played it tough from the
start. When Margaret Williams contacted them with legitimate
queries on how the GDG was put together, they began to log her
calls. Professor Peter Littlejohns, Clinical and Public Health
Director of NICE was immediately alerted, and a strategy to
block a Freedom of Information request was discussed. NICE
e-mails containing these details were appended to the Hocking
WS, and presented to the Judge on the first day of the
hearing. Margaret Williams readily confirms that she did
indeed contact NICE, but refutes many of the allegations made
by them subsequently.
In a letter to Stephen Hocking
on 8th February 2009, (contained in the Hocking WS)
Professor Littlejohns complained that the ME patient
“activists” had used the judicial process “to forward a
particular clinical standpoint” and claimed that he had been
informed by NICE Implementation consultants that the CFS/ME
guideline had actually been “well received”.
Professor Wessely and
like-minded psychiatrists who have “a particular clinical
standpoint” on CFS/ME are now claiming credit for influencing
NICE Guideline CG53.
Professor Littlejohns seems to
have no difficulty with their celebration. But it seems he
cannot accept it was legitimate for the ME patient community,
having been comprehensively ignored by NICE, to use the
judicial process to ensure an opposing point of view, thus
addressing NICE’s patent lack of balance.
Professor Littlejohns is well
used to judicial review challenges funded by the
pharmaceutical industry. But the CFS/ME challenge was quite
different. It represented a full-scale revolt by the ME
patient community, and it left NICE floundering. Not one
single patient charity could be found who would give an
unreserved endorsement of CBT & GET. The Fraser &
Short challenge had full support from the MEA, the TYMES
Trust, and the 25% ME Group for the Severely Affected. The MEA
online survey suggested we had the support of a very large
majority of individual patients. Even Sir Peter Spencer of
AfME claims sympathy with our concerns regarding CBT/GET
(although he gave no active support with the judicial
review).
The attempt by NICE to paint
Fraser/Short supporters as a few fringe activists was risible.
Easily demonstrated for example by viewing the supportive
statement of Dr Ian Gibson MP now available on-line with his
permission [1].
Details of the JR will continue
to emerge, and we will comment further when we have recovered
some energy. The Judgement is now viewable on-line.
[2]
Douglas Fraser & Kevin
Short.
17/3/09.
[1]
www.angliameaction.org.uk/NICEJRdocs/Ian_Gibson_WS.pdf
www.meactionuk.org.uk/Ian_Gibson_WS.pdf
[2]
www.angliameaction.org.uk/NICEJRdocs/JUDGEMENT.pdf
www.meactionuk.org.uk/JUDGEMENT-Fraser_and_Short_v_NICE_2326_001-1.pdf
[permission
to repost].