Responses from the DWP about the Department=E2=80=99s classification of ME/=
CFS
Margaret Williams 1st November 2011
On 18th July 2011 Professor Malcolm Hooper wrote to the Secretary of State
at The Department for Work and Pensions (DWP) about an apparent discrepancy
between two major Departments of State on the same medical issue, namely
the different categorisations of ME/CFS, the Department of Health (DoH)
classifying it as a neurological disorder and the DWP classifying it as a
mental disorder (http://www.meactionuk.org.uk/dwp_doh_classification.htm).
The letter was copied to the Secretary of State for Health.
Whilst no acknowledgement was received from the DWP, on 11th August 2011 a
reply was sent on behalf of the Secretary of State for Health, signed by
Adam Butler of the DoH Customer Service Centre (reference TO00000632586),
which said:
=E2=80=9CThe Department of Health has always relied on the definition set o=
ut by
the World Health Organization in its International Classification of
Diseases (ICD) under ICD Code G93.3, subheading =E2=80=98other disorders of=
the
brain=E2=80=99=E2=80=A6.You suggest that guidance used by decision-makers i=
n the Department
for Work and Pensions (DWP) is unsatisfactory. The DWP=E2=80=99s Health and
Benefits Division was responsible for drafting the guidance. I note you
have written directly to the DWP and hope you receive a helpful reply=E2=80=
=A6.I
hope this clarifies the Department=E2=80=99s position=E2=80=9D.
On 28th August 2011 Professor Hooper responded to the letter from the DoH
and a copy was sent to the Secretary of State at the DWP (
http://www.meactionuk.org.uk/Butler-letter-reply-28-8-11.htm) from whom a
response had still not been received.
However, it seems that on 27th July 2011 the DWP did send a snailmail
letter to Professor Hooper which he did not receive: on 28th September 2011
telephone contact was made directly with the Ministerial Correspondence
Manager at the DWP, who kindly emailed a copy of the unsigned letter that
was on the DWP=E2=80=99s file.
That letter made no attempt to address the substance of Professor Hooper=E2=
=80=99s
letter; it was sent by someone in the DoH Correspondence Team (refererence
TO/11/26695) and it said:
=E2=80=9CThank you for your recent correspondence. Government Ministers rec=
eive a
large volume of correspondence and they are unable to respond personally on
every occasion=E2=80=A6.The Government is looking at a wide variety of issu=
es
relating to benefits and pensions. Ministers believe that reform is
necessary in a number of areas, and on 16 February they presented the
Welfare Reform Bill to Parliament=E2=80=A6.Ministers do welcome all views, =
and I
would like to thank you for your comments=E2=80=9D.
During the telephone conversation on 28th September 2011 with the
Ministerial Correspondence Manager he volunteered that it was not an
acceptable response. When asked for the name of the person who had signed
it, the Ministerial Correspondence Manager confirmed that there was no
signature, nor was there the person=E2=80=99s printed name, nor the name of=
a team
manager on it, even though the new Permanent Secretary has made it a
requirement that all correspondence must bear both the printed name of the
signatory and the printed name of the relevant team manager.
In a curious twist, a snailmail letter dated 13th September 2011 was
subsequently received by Professor Hooper; it bore an illegible signature,
no printed names and a completely different reference (TO/11/32085); the
Ministerial Correspondence Manager confirmed that, inexplicably, it was not
on the DWP=E2=80=99s tracking system and he could not trace it as it had no=
t been
saved into the DWP=E2=80=99s electronic database.
It was, however, an important letter, so a scanned image was duly sent to
the Ministerial Correspondence Manager, who was unable to identify the
signatory.
The letter of 13th September 2001 that was missing from the official DWP
file referred incorrectly to =E2=80=9CMyalgic Encephalitis=E2=80=9D and it =
failed to
address key issues in Professor Hooper=E2=80=99s original letter. It did, h=
owever
state the following:
=E2=80=9CI can confirm that the Department for Work and Pensions does not c=
lassify
CFS/ME as a mental health disorder=E2=80=9D.
That is a useful statement from the DWP and, quoting the reference
TO/11/32085, can be cited by those with ME/CFS embroiled in appeals against
refusal of their State and/or insurance benefits.
However, the reasoning given for the apparent categorisation of ME/CFS as a
mental disorder in the DWP=E2=80=99s Guidance for HMRC appeared to be littl=
e more
than a face-saving exercise:
=E2=80=9CThe Incapacity Reference Guide has a flag against both CFS and ME =
to alert
the decision maker to the fact that a proportion of people with CFS/ME have
mental health symptoms. The reason why some conditions are flagged as
having a mental health component is because people with mental health
conditions are recognised as being potentially vulnerable and therefore
appropriate safeguards can be put into place during their claim to benefit.
These safeguards include not automatically rejecting their claim to benefit
should they fail to return the benefit related questionnaire=E2=80=9D.
Professor Hooper found this explanation wholly unsatisfactory and a reply
dated 28th September 2011 was sent by email:
=E2=80=9CIt is incontrovertible that the HMRC Incapacity Reference Guide do=
es
classify ME/CFS as a mental disorder, so the alleged explanation in the
attached letter (the one that is not on your system) is unacceptable, not
least because there is no similar asterisk alongside other classified
neurological disorders such as multiple sclerosis, sufferers from which
might also be =E2=80=98vulnerable=E2=80=99 to not returning their benefits-=
related
questionnaire. I look forward to hearing from you, as this matter is in
urgent need of clarification=E2=80=9D.
No response was received, so on Monday 10th October 2011 email contact was
again made with the Ministerial Correspondence Manager at the DWP:
=E2=80=9CProfessor Hooper was wondering if you had made any progress on thi=
s
matter?=E2=80=9D, to which a reply was sent that same day (under the refere=
nce
TO/11/26695, not under TO/11/32085): =E2=80=9CI=E2=80=99m waiting for polic=
y colleagues to
provide the substance of a response. They should be getting back to me by
close today, so hopefully you/Professor Hooper should have a reply by the
end of the week=E2=80=9D.
Once again, nothing was received by Professor Hooper, so on 28th October
2011 a further reminder was sent by email to the Ministerial Correspondence
Manager at the DWP, who responded on 31st October 2011 saying that a letter
dated 12th October had been sent by snailmail to Professor Hooper (which he
once again did not receive). An electronic copy was attached which said:
=E2=80=9CI undertook to respond further and apologise for the delay in doin=
g so. I
am sorry that we used the wrong name for the condition in the previous
letter. With regard to the classification of CFS/ME, we would like to
emphasise that the entitlement to benefit does not depend on the condition
itself, the underlying cause or how it is classified, but on the disabling
effects of the condition(s) present. The Department therefore firmly reject
the view that the HMRC reference guide classifies ME/CFS as a mental
disorder. The flag/asterisk appears against CFS/ME because there is
evidence that the majority of people with CFS/ME have symptoms that affect
mental function and is a genuine attempt to protect the interests of people
with CFS/ME=E2=80=A6.The reason why no flag is set against MS is because, a=
lthough
associated with depression, there is evidence that the incidence of
depression is less than that in CFS/ME. As explained previously, this
ensures people with CFS/ME currently do not have their benefit disallowed
should they fail to return their questionnaire and removal of the flag
could be seen as a retrograde step=E2=80=9D.
For the avoidance of doubt, the DWP is incorrect in stating that incidence
of depression is less in MS than in ME: there is evidence to show that
rates of depression are no higher in ME/CFS than in other chronic medical
conditions (Shanks MF and Ho=E2=80=90Yen DO, British Journal of Psychiatry
1995:166:798=E2=80=90801); indeed, the rates of overall psychiatric disorde=
rs in
ME/CFS are no higher than general community estimates (Hickie I et al.
British Journal of Psychiatry 1990:156:534=E2=80=90540).
Once again, key issues in Professor Hooper=E2=80=99s letter were simply ign=
ored.
There was no acknowledgement of the fact that the WHO classifies ME/CFS as
a neurological disorder in ICD-10, nor was there any undertaking that all
departments of the DWP (and hence HMRC) would, as Professor Hooper
requested, be notified of the requirement to adhere to this mandatory
classification.
Asterisks in the HMRC Reference Guide are appended only to disorders that
are stated in the Guide to be unequivocal mental disorders including, for
instance, alcohol and substance abuse, eating disorders, hysteria,
neurasthenia, overdose, paranoia, personality disorder, psychosis and
schizophrenia, yet the same list also includes CFS, ME and postviral
fatigue syndrome.
Of note is the fact that =E2=80=9Cmemory impairment=E2=80=9D and =E2=80=9Cm=
emory problems=E2=80=9D such as
may occur after traumatic brain injury or in Alzheimer=E2=80=99s disease ar=
e not
flagged as mental health disorders yet, following the logic set out in the
DWP letters, it is precisely those problems which could cause clients
(formerly known as patients) suffering from such memory impairment to fail
to return the benefits assessment form within the allotted time-scale, yet
the DWP sees no need to safeguard their benefits.
Moreover Atos, the international information technology services company
that -- using computerised tick-box score-points -- works for the DWP in
assessing entitlement to State benefits is definitely training its staff
that ME/CFS is a mental health disorder (
http://www.meactionuk.org.uk/PACE-PIs-and-the-DWP.htm), another issue that
was not addressed by the DWP.
Indeed, the DWP Medical Services Training and Development on Chronic
Fatigue Syndrome Guidelines are clear: =E2=80=9CMost cases of chronic fatig=
ue (sic)
are attributable to abnormal illness behaviour=E2=80=A6.In fact, most patie=
nts with
CFS will also meet the criteria for a current psychiatric disorder=E2=80=9D=
(
http://www.meactionuk.org.uk/PACE-PIs-and-the-DWP.htm).
A further point that remains unaddressed by the DWP is that according to
Atos=E2=80=99 own guidelines, if there is any neurological problem, such pa=
tients
must be assessed by a doctor and not by a nurse or a physiotherapist,
therefore everyone with a diagnosis of ME/CFS must be assessed by a
qualified doctor, otherwise the entitlement assessment could be deemed null
and void (http://margaretmccartney.com/blog/?p=3D904).
Perhaps the All Party Parliamentary Group on ME (APPGME), or even the two
patients=E2=80=99 charities (the ME Association or Action for ME) could tak=
e up
these unaddressed issues with the DWP =E2=80=93 it is, after all, their job=
to
represent the best interests of those with ME/CFS.
They might also wish to point out to the DWP that the Norwegian Government
has apologised to patients with ME/CFS for not having provided the
necessary and proper health services for them. The Deputy Director General
of the Norwegian Directorate of Health recently made the following
statement: =E2=80=9CI think that we have not cared for people with ME to a =
great
enough extent. I think it is correct to say that we have not established
proper health care services for these people, and I regret that=E2=80=9D (
http://www.euro-me.org/news-Q42011-003.htm).
It may also be appropriate to bring to the attention of the DWP the fact
that Norwegian oncologists are treating Norwegian ME/CFS patients with a
widely-used drug for lymphoma and autoimmune disorders and that one of
those oncologists is on record affirming that in many patients, ME/CFS is
=E2=80=9Ca very serious and debilitating disease=E2=80=9D and that an =E2=
=80=9Cautoimmune component
is probable=E2=80=9D (Co-Cure RES:
31 October 2011).
Indeed, it was in 1995 that the devastating effects were accurately
described at a US Congressional briefing by Professor Mark Loveless, Head
of the AIDS and (ME)CFS clinic at Oregon Health Sciences University, who
said that an ME/CFS patient =E2=80=9Cfeels effectively the same every day a=
s an
AIDS patient feels two weeks before death=E2=80=9D =E2=80=93 the only diffe=
rence being that
ME/CFS symptoms can go on for decades until ultimately the body gives up
the struggle to survive. As another US researcher has demonstrated, people
die from ME/CFS and on average they die 20 years earlier (Causes of Death
Among Patients with Chronic Fatigue Syndrome. Jason L et al. Healthcare for
Women International: 2006:27:615-626).
This should be compared with the assertions of Wessely School psychiatrists
who refer to ME/CFS as a =E2=80=9Cpseudo-disease=E2=80=9D (Occup Med 1997:4=
7:4:217-227) and
whose views about ME/CFS have informed UK Government policy, for example:
=E2=80=9CThe vehemence with which many patients insist that their illness i=
s
medical rather than psychiatric has become one of the hallmarks of the
condition=E2=80=A6.Purchasers and Health Care providers with hard pressed b=
udgets
are understandably reluctant to spend money on patients who are not going
to die and for whom there is controversy about the =E2=80=9Creality=E2=80=
=9D of their
condition (and who) are in this sense undeserving of treatment=E2=80=A6.Tho=
se who
cannot be fitted into a scheme of objective bodily illness yet refuse to be
placed into and accept the stigma of mental illness remain the undeserving
sick of our society and our health service=E2=80=9D (ME. What do we know --=
real
physical illness or all in the mind? Lecture given in October 1999 by
Michael Sharpe, hosted by the University of Strathclyde).
When might people with ME/CFS in the UK expect a similar apology from their
Government as received by Norwegians with the same disorder?
Permission to repost.
---------------------------------------------
Send posts to CO-CURE@listserv.nodak.edu
Unsubscribe at http://www.co-cure.org/unsub.htm
Too much mail? Try a digest version. See http://www.co-cure.org/digest.htm
---------------------------------------------
Co-Cure's purpose is to provide information from across the spectrum of
opinion concerning medical, research and political aspects of ME/CFS and/or
FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
research the various opinions available before assuming any one
interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
link to our complete archive of posts as well as articles of central
importance to the issues of our community.
---------------------------------------------
