|
Nice Guidelines -
what's next?
Though NICE, with their well-paid lawyers
and establishment machine behind them, have won the Judicial
Review brought against them by ME patients this is a pyrrhic
victory.
The fact that yet another group of
patients have forced NICE to have to defend its policies and
guidelines – guidelines meant to make the lives of those same
patients better – shows how flawed the NICE organisation is
and how little trust patients have in its approach and its
conclusions.
Those who manage NICE and who force these
unwanted guidelines on to chronically ill patients ought to
reflect on the morality of their actions.
NICE have issued a crowing press
statement where Professor Peter Littlejohns, NICE Clinical and
Public Health Director, states –
|
“This result is very good news for
the thousands of people with CFS/ME, who can continue to
benefit from evidence-based diagnosis, management and
care for this disabling condition. The 2007 guideline
was welcomed by patient groups as an important
opportunity to change the previous situation for the
better, helping ensure that everyone with CFS/ME has
access to care appropriate for the individual. Today's
decision means that the NICE guideline is the gold
standard for best practice in managing
CFS/ME." |
Quite where Professor Littlejohns has
been these past few years is unknown. His ridiculous comment
that the 2007 guideline was welcomed by patient groups is spin
worthy of the best of Blairite government.
The only patient groups to support NICE
were AfME and AYME – two charities who accept money from the
government to support their policies (see
December 2008
newsletter) and who, in our opinion, are
unrepresentative of people suffering from ME as defined by WHO
ICD-10 G93.3. The officials of these organisations will have
to live with their consciences with regard to their support
for NICE; they will have to justify, for years to come, the
effect that their support for these guidelines will have on
those people who choose to continue to remain members and who
continue to pay their subscriptions and fund the salaries of
the leaders of these charities.
The “gold standard for best practice in
managing CFS/ME” to which Littlejohns refers is an unworthy
document which will fail to treat people with ME but may well
satisfy insurance companies, career psychiatrists and
government departments who have exhibited disdainful
indifference to the plight of people with ME.
Littlejohns ends his statement with
–
| “The judgment acknowledges the
robust procedures that NICE follows in ensuring that its
guidance is independent, evidence-based and fit for
purpose. We're delighted that this issue is now closed
and look forward to continuing to produce world-class
guidance which benefits everyone who uses the
NHS” |
For Littlejohns and his superiors to
ignore completely how damaging this case has been to NICE is
myopic in the extreme.
“
The only thing worse than being blind is
having sight but no vision.”
( Helen
Keller)
The problem is that Littlejohns and NICE
just don’t get it - and this typifies the flaws and lack of
vision in NICE.
This is not the end of anything - it is a
continuation of the beginning.
The NICE guidelines are an affront to
good science and common sense and essentially worthless for
healthcare professionals as well as for people with
ME.
NICE have so damaged themselves as an
organisation that their utterances in the future will carry
even less weight and will weaken even further this deeply
flawed organisation.
We feel NICE’s days may well be numbered
in its present form. How many more patients will need to
challenge decisions by NICE before the government is forced to
act and overhaul the management and the objectives of this
organisation?
An organisation that purports to be
“committed to promoting equality, eliminating unlawful
discrimination, and actively considering the implications of
its guidance for human rights” and yet is taken to court by
the same patients for whom it claims to promote good
healthcare – this is an organisation that deserves to be
overhauled.
So- what’s next?
This battle to get proper diagnosis,
proper treatment and proper funding for biomedical research
into ME is not lost.
Despite the actions and lack of proper
conduct by NICE, the Medical Research Council and even some ME
organisations this battle will be won by ME patients and their
families.
The deafening silence from the media in
covering yet another case being brought by patients against
NICE is an interesting aspect. One wonders why, yet again,
that ME does not make the news. But this is something we can
fight with better education.
The Lost
Voices book clearly shows the effect
of the lack of education regarding ME by healthcare services
and will be available at all medical libraries in the
UK.
In May we have the International ME/CFS
Conference – the fourth hosted and organised by Invest in ME
and showing conclusive proof of the biomedical basis of the
illness and the treatments which are being developed and are
available. We will look at severe ME – something NICE, the MRC
and the NHS fail to acknowledge.
The ME community have the
Whittemore-Peterson Institute and their determination to carry
out proper research into ME and produce diagnostic
markers and treatments for ME. With the founder members of the
WPI and its research director all at the IiME conference in
London in May we will present data which shows ways to manage
and treat ME. One would expect any organisation who really
wish to understand ME to wish to be present.
Work will, in any case, begin soon on
replacing these guidelines. Patients up and down the country
will refuse the biased and ineffectual therapies forced on
doctors to prescribe to patients. Those charities and
organisations who are really representing people with ME will
not allow this particular issue to be closed.
The NICE guidelines for ME are not
world-class. They are a poor attempt at saving money and
encapsulate all that is wrong in the way that health provision
is created, researched and administered in the
UK.
Invest in ME -
March 2009
| 