On the 18th of July, Professor Hooper sent a letter to the Secretary of
State for Work and Pensions and to the Secretary of State for Health on the
discrepancy between the departments' classifications of ME. This letter is
already in the public domain:
http://www.meactionuk.org.uk/dwp_doh_classification.htm
To date he has received no response from the Secretary of State for Work an=
d
Pensions but has received a reply from the Department of Health. The
following letter is Professor Hooper's response to that reply:
http://www.meactionuk.org.uk/Butler-letter-reply-28-8-11.htm
From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
University of Sunderland, SUNDERLAND SR2 3SD
Chief Scientific Adviser to the Gulf Veterans' Association
President: the National Gulf War Veterans and Families Association, NGVFA,
(2002)
Mr Adam Butler
Customer Service Centre
Department of Health
Richmond House
79 Whitehall
London
SW1A 2NS
28th August 2011
Your ref: TO00000632586
Dear Mr Butler
*re: The major discrepancy between the Department of Health and the
Department for Work and Pensions on the same medical issue*
Thank you for your letter of 11th August 2011 sent in response to my letter
of 18th July 2011 to The Rt Hon Iain Duncan Smith MP, Secretary of State at
the Department for Work and Pensions that was copied to The Rt Hon Andrew
Lansley MP, Secretary of State for Health, on whose behalf you replied.
I am grateful for the courtesy shown by Mr Lansley, a similar courtesy not
having been shown by Mr Duncan Smith from whose Department I have received
no acknowledgement, so this letter will be copied to him.
In my letter I drew attention to a serious error in the Statutory Payments
Manual (SPM 50605) used by decision-makers, namely the categorisation of ME
as a mental health disorder.
In your reply you confirm that this error was the responsibility of the DWP=
:
=93*You suggest that guidance used by decision-makers in the Department for
Work and Pensions (DWP) is unsatisfactory. The DWP=92s Health and Benefits
Division was responsible for drafting the guidance=94.*
It is, of course, the case that Professor Peter White, a psychiatrist who
works for the permanent health insurance industry, was and remains lead
advisor on =93CFS=94 to the DWP and, despite irrefutable evidence that he i=
s
incorrect, he is firmly committed to his belief that ME is a somatoform
(mental) disorder and he advises the DWP accordingly.
Herein lies the major discrepancy between two Departments of State: whilst
the DWP rejects the WHO ICD-10 classification of ME as a neurological
disorder and follows Professor White=92s beliefs that it is a mental disord=
er,
the Department of Health nominally accepts the WHO ICD-10 classification of
it as a neurological disorder.
There are in fact two related issues, one being the discrepancy between two
Departments of State outlined above and the other relating specifically to
the DoH, this being the failure of the DoH to comply with the 1995 mandate
to observe the WHO-ICD-10 classification system (see below).
*The first issue*
To summarise (and reiterate) the position of both Departments of State and
their previous public statements about the nature of ME:
1. the Department of Health accepted ME as an organic disease in 1987
(Hansard, HC 27th November 1987, column 353)
2. in a letter dated 13th March 1992 to James Pawsey MP (ref: POH (3)
2484/200), in his capacity as Parliamentary Under Secretary of State for
Health, Stephen Dorrell MP set out the official view of the Department of
Health on ME: referring to the Disability Handbook produced by the
Disability Living Allowance Board, the Minister stated: =93*The Handbook
recognises that in some persons with ME there is evidence of persisting
viral infections in muscles, with some evidence of muscle damage. Hence, a
physical cause for ME is recognised=94*
3. on 16th August 1992, Stephen Dorrell MP, Minister of Health, went on
public record confirming that =93*ME is established as a medical
condition=94*when he addressed a meeting of the Leicestershire ME Group
4. not only the DoH but also the DWP recognises that ME is a physical
disorder. In the British Library Current Awareness Topics Update for March
2000 is listed (on page 6) the following: Social Security Ruling, SSR 99-2p=
;
titles II and XVI; evaluating cases involving chronic fatigue syndrome
(CFS). Fed Regist 1999 Apr 30;64(83);23380-4: *=93In accordance with 20 CFR
402.35(b)(1), the Commissioner of Social Security gives notice of Social
Security Ruling SSR 99-2p. This Ruling clarifies disability policy for the
evaluation and adjudication of disability claims involving Chronic Fatigue
Syndrome (CFS). This Ruling explains that, when it is accompanied by
appropriate medical signs or laboratory findings, CFS is a medically
determinable impairment that can be the basis for a finding of =93disabilit=
y=94.
This Ruling ensures that all adjudicators will use the same policies and
procedures in evaluating disability claims involving CFS, and provides a
consolidated statement of these policies and procedures=94*
5. this was reported in the Disability Rights Bulletin, Summer 2000, in the
following terms: *=93In assessing DLA higher rate mobility component for
people with ME, recent guidance advises decision makers to assume in the
vast majority of cases that the claimant has a physical disablement. The
Commissioner, in CDLA/2822/99, held that an award of the higher rate
mobility component can be made on the basis of the physical element of the
condition. Guidance (DMG Memo Vol 10-3/00) advises decision makers that, in
the vast majority of claims, if a doctor says the claimant has ME or CFS
then that can be taken as an opinion that they have a physical disablement=
=94*
*6.* on 18th September 2002, the Director of Communications at NICE issued =
a
Communications Report which stated*: =93Following discussions with the
Department of Health and other national agencies the Institute has adopted =
a
new classification system that will be applied Institute-wide=94 (2.7.1.1);
=93The ICD classification has been used as a basis for the new Institute
classification directed at the informed reader=94 (2.7.1.4);
=93ICD-10=85classification codes are mandatory for use across England=94.*(=
2.7.1.5)
7. ME has been included as a neurological disorder in the UK Read Codes
(F286) used by all GPs since 2003
8. by letter dated 11th February 2004 to the Countess of Mar, the
Parliamentary Under Secretary of State at the Department of Health, Lord
Warner, confirmed that the DoH accepts the WHO classification of ME as a
neurological disorder. That letter was placed by Lord Warner in the House
library for access by all MPs.
9. ME has been included in the National Service Framework for long-term
neurological condition since its inception in 2005
10. the DoH has confirmed on numerous occasions, many documented in Hansard=
,
that the DoH itself and the UK Government accepts ME to be a neurological
disorder, for example on 2nd June 2008 the then Parliamentary Under
Secretary of State, Lord Darzi, was unequivocal: =93*My Lords, the Governme=
nt
accept the World Health Organisation=92s classification of CFS/ME as a
neurological condition=85.I have acknowledged that CFS/ME is a neurological
condition=85the Government=85have made it clear that=85 it is a neurologica=
l
rather than a mental condition=94.*
11. by letter dated 3rd August 2011 (reference TO00000632783), Tim Morgan
from the Department of Health Customer Services Centre confirmed the
following: =93*The ICD-10 is an NHS Information Standard=85.The NHS has a l=
ong
history of using the ICD. There is a legal obligation for Department of
Health to provide ICD data to the WHO for international comparison. The NHS
was mandated to implement ICD-10 on 1 April 1995, at which time there was a
formal consultation (emphasis added)=85.Implementation=85applies to NHS
organisations and their system suppliers, such as acute and foundation
trusts, primary care trusts, and the NHS Information Centre=94.* (It is, of
course, the case that Government officials such as yourself may use bogus
names -- known as =93office names=94 -- when writing to members of the publ=
ic [=93
*Civil servants use bogus names to sign official letters=94;* Roya Nikkhah;
Sunday Telegraph; 20th June 2004], so the true authorship of both your own
letter and that of Tim Morgan remains unconfirmed but must nonetheless be
taken as authoritative documents).
You say in your letter: =93*As you may know, in 2007, NICE published Clinic=
al
Guideline 53 (CG53) on the diagnosis and management of CFS/ME in adults and
children, to advise the NHS on the treatment of CFS/ME in England and
Wales=94.* The documentary evidence outlined above makes it all the more
troubling that the NICE Guideline Development Group which produced CG53
expressly rejected the WHO classification of ME as a neurological disorder
and voted to remove from its deliberations its initial acceptance of ME as
an organic disorder, this being confirmed by patient representative Tanya
Harrison in her letter of resignation dated 16th July 2007 from the GDG: =
=93*the
final straw came when the group voted to remove that ME/CFS is a physical
illness*=94, which reflects the beliefs and advice of Professor Peter White=
to
the DWP.
Mindful of the above evidence, it will not be sufficient for you to reply t=
o
this current letter saying that this discrepancy between two Departments of
State is a medical matter for the PCTs to address.
It is a policy issue and thus a matter for the two Secretaries of State
themselves to address and resolve without further delay.
The WHO has classified ME as a neurological disorder since 1969 and ME
cannot be taxonomically considered by the DWP or any other Department to be
a somatoform disorder; that the DWP persists in doing so is all the more
disturbing when, in another Department of State, the entire NHS is mandated
to regard ME as a neurological disorder.
*The second issue*
Given that the NHS has been mandated since 1995 to implement the ICD-10
classifications, and given that =93mandatory=94 means =93obligatory, compul=
sory=94
and that a mandate is =93an official or authoritative instruction or comman=
d=94,
not only the DWP but also the NHS has patently failed to comply with the
1995 mandate to implement ICD-10 classifications.
Influenced by the Wessely School (who act as advisors to other Government
departments and to NICE as well as to the DWP), not only the Wessely School
themselves but also many NHS neurologists are in breach of the 1995 mandate
that pertains throughout the NHS: 84% of neurologists questioned stated tha=
t
they do not believe ME exists as a neurological condition (J Psychsom Med
9th April 2010), despite the reported evidence of markers of severe
ganglionitis having been found in the central nervous system in several *po=
st
mortem* samples.
In one particular case, that of 32 year-old Sophia Mirza who died in
November 2005 (whose death certificate recorded that she died of [ME]CFS),
examination of her spinal cord showed inflammatory changes affecting the
dorsal root ganglia, which are the gateways for all sensations going to the
brain through the spinal cord. These inflammatory changes affected 75% of
Sophia=92s spinal cord.
At the inquest held on 13th June 2006, one of the pathologists stated: =93*=
ME
describes inflammation of the spinal cord and muscles. My work supports the
inflammation theory because there was inflammation in the basal root
ganglia=94.*
Dr O=92Donovan (the neuropathologist who had examined the spinal cord) stat=
ed
that ME =93*lies more in the realms of neurology than psychiatry, in my
opinion=94. *
Given that NHS staff are mandated to use ICD-10 codes, I should be grateful
if you would explain why such a medically unsustainable situation has been
allowed by the DoH to remain unchallenged for the last 16 years, since ther=
e
is a legal obligation for the DoH to provide accurate ICD data to the WHO.
Recently, 26 expert authors (from 13 countries) produced the International
Consensus Criteria for ME (Carruthers B et al; J Int Med 20th July 2011) an=
d
they strongly advocate that ME be removed from the NICE CG53 definition of
=93CFS/ME=94.
This should become a priority since, despite the fact that in ICD-10 the WH=
O
currently indexes =93CFS=94 only to ME at G93.3, the Wessely School
psychiatrists and their adherents who work for the insurance industry have
hijacked the term =93CFS=94 to mean a syndrome of =93chronic fatigue=94 (wh=
ich is
classified in ICD-10 at F48.0 as a mental disorder but which the Wessely
School erroneously insist is synonymous with ME).
It is essential that in relation to internationally defined ME, UK
Departments of State begin implementing evidence-based policy instead of
creating expedient policy-based evidence (which the Wessely School has done
successfully for almost 25 years) and separate ME from =93CFS/ME=94. This i=
s now
very important, especially as Professor Peter White confirmed in writing to
the Editor-in-Chief of The Lancet (a copy of which was sent to me) that: *=
=93The
PACE trial paper refers to chronic fatigue syndrome (CFS) which is
operationally defined; it does not purport to be studying CFS/ME*=94. That
statement is mystifying, since the PACE Trial documentation consistently
refers to =93CFS/ME=94. Professor White=92s statement also raises the quest=
ion as
to why he received =A35 million from the MRC (co-funded by the DoH, the DWP
and the Scottish Chief Scientist=92s Office) to study chronic tiredness tha=
t
is prevalent in many primary psychiatric disorders, yet he asserts that the
results of his PACE Trial are generalisable to those with a serious
neurological disorder that he now claims he was not studying after all.
These issues are of utmost importance not only to 250,000 people in the UK
and their despairing families who are struggling to cope with a devastating
neurological disorder, but also to the clinicians who see for themselves
that people with classic ME are physically, not mentally, ill but who are
thwarted in their attempt to investigate and support them by the overarchin=
g
influence of the Wessely School.
I therefore once again call upon both Secretaries of State to provide
informed and firm leadership by re-circulating directions that the 1995
mandate to comply with the ICD-10 classifications must legally be complied
with by clinical and clerical staff in both Departments of State and that
any individuals who refuse to comply are held personally and publicly
accountable for any failure to observe that mandate.
It is obviously imperative that different Departments of State have a
unified position regarding the nature of a serious disease such as ME and i=
t
is equally important that the legal requirements of the WHO be observed by
the UK, which currently is not the case as far as ME is concerned. I should
therefore be grateful if you would clarify what action is being taken by
your own Department about these important issues.
Yours sincerely,
Malcolm Hooper
2, Nursery Close
SUNDERLAND
SR3 1PA
Phone 0191-5285536
e-mail:
hoopersecundus@talktalk.net
cc. The Rt Hon Iain Duncan Smith MP, Secretary of State, Department for Wor=
k
and Pensions.
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