Written evidence submitted by Action for
M.E. (Myalgic Encephalomyelitis/Encephalopathy) is
a chronic, fluctuating illness, also known as Chronic Fatigue
Syndrome (CFS) and sometimes diagnosed as Post Viral Fatigue Syndrome
(PVFS). It affects over 250,000 people in the UK. Common symptoms
include persistent exhaustion, un-refreshing sleep, poor concentration
and memory, headache, muscle pain and digestive problems. It is
of crucial relevance to this submission to understand that this
illness fluctuates over time, and that its profoundly disabling
characteristic symptoms are not routinely understood by the Department
of Work and Pensions (DWP) and their agents Atos assessing applications
for support from people with M.E.
Patient surveys and epidemiological estimates indicate
that up to 25% of people with the illness are so severely affected
that they are unable to leave their homes or beds, some for many
years. M.E. can affect anyone, at any age and from any ethnic
Action for M.E. is the UK's leading charity dedicated
to improving the lives of people with M.E. We have been at the
forefront of the campaign for more research, better treatments
and services since 1987, and we provide information and support
to people affected by M.E.
The purpose of this document is to respond to the
Work & Pensions Select Committee Inquiry on Migration from
Incapacity Benefits (IB) to Employment Support Allowance
(ESA) drawing on feedback we have received from people with M.E.
and other evidence.
Action for M.E. welcomes the opportunity to comment
on Migration at this stage so that improvements can be made in
a timely fashion before more people are rushed through a process
which has shortcomings acknowledged by the Government and which
is damaging to the health of a number of patient groups including
those who suffer from M.E. We are also hopeful that this inquiry
will not be the end of the Committee's scrutiny of the migration.
At this stage it is not possible to determine how representative
the experience of claimants in the pilot transition exercise have
been and we hope there will be further opportunities to feedback
problems that emerge.
The procedure for transition from IB to ESA centres
upon the same Work Capability Assessment that is made for new
Applicants for ESA. Action for M.E. gave a comprehensive response
to the Government call for evidence for the independent review
of the Work Capability assessment in 2010. Our five key areas
of concern were:
opportunity/scope to reflect the impact of symptoms typically
experienced by people with M.E. including fluctuating symptoms
over time, the post-exertional pattern of malaise and inability
to sustain a given activity, and "invisible" factors
such as mental fatigue and cognitive difficulties. This is exacerbated
by a reluctance to accept evidence provided by those who have
an ongoing relationship with the person with M.E. including General
Practitioners, hospital consultants and other healthcare professionals,
and carers and family members.
scepticism towards the diagnosis of M.E. set within a broader
cultural perception within the benefits system that applicants
are fraudsters until proven otherwise, and a lack of recognition
of barriers to work which are not patently visible, including
cognitive problems and fatigue, particularly when the applicant
understanding of and training in up-to-date data on M.E. by assessors
and decision makers including medical staff.
expectations on claimants with M.E.to find and sustain work over
system is overly complex and demanding, confusing those who experience
"brain fog." It is also excessively stressful, with
inadequate support to navigate it.
Our evidence included input from a leading M.E. Clinical
Consultant to demonstrate the adverse impact that the WCA is having
on the health of his patients. An example of one of his anonymised
letters follows this submission for ease of reference.
On 23 November 2010, Professor Malcolm Harrington
published the first independent review of the WCA.
The report highlights a number of problems which have been experienced
by new applicants for Employment and Support Allowance, in particular
those who suffer from fluctuating conditions such as M.E.
The Government responded to the independent review
by saying that they supported all of Professor Harrington's recommendations.
We hope that the Select Committee will hold the Government to
account in any areas where this commitment is not being upheld.
Meanwhile increasing numbers of people with M.E.
are contacting us in despair to tell us that they have been assessed
as "fit for work", yet the practicalities of seeking
and sustaining even part-time work would be unmanageable for them.
We expect these cries for help to increase dramatically because:
recently introduced changes to the descriptors which are used
to "score" applications for ESA have been changed in
a manner that makes it even harder for people with M.E. to achieve
the points required to substantiate a claim for this allowance.
ESA is rolled out to current Incapacity Benefits claimants a very
much larger number of people with M.E. will have to undergo assessment.
IB TO ESA
Action for M.E. has objected strongly to the WCA
being conducted on people with health problems for which it is
not fit for purpose. The Government has acknowledged that further
work needs to be done and this is part of Professor Harrington's
ongoing remit. We believe that there is a strong case for suspending
the assessment of people with M.E. and similar neurological conditions
such as Parkinsons Disease and MS until an appropriate way of
conducting assessments has been established. When pressed the
best answer we can obtain from the DWP amounts to administrative
It is therefore doubly disappointing that the rate
of assessments will now increase rapidly with the initiation of
transition from IB before Harrington has reported his year two
findings and made recommendations concerning the assessment of
claimants with chronic fluctuating conditions.
Another major concern is that the limitation to 12
months for people who are granted ESA at the contribution rate
will greatly exacerbate the disability poverty already endured
by those on IB.
At the time of writing, Action for M.E. has been
contacted by one person with M.E. who had personal experience
of the migration that was not unfavourable. Some administrative
problems and delays were experienced but the Health Care Professional
involved took time over the face to face assessment and had an
understanding of M.E. This made a huge difference and is an example
of good practice and shows that the Department for Work and Pensions
(DWP) and Atos can do better if they so decide.
Our main recommendations to the Select Committee
are to press the DWP to:
its work to develop a more accurate and appropriate assessment
process for people with M.E. and similar neurological conditions;
why it has gone ahead with transition from Incapacity Benefit
to Employment and Support Alliance using an assessment process
that it knows to be flawed for people with fluctuating chronic
an undertaking that genuinely disabled people such as those with
M.E. will in future be assessed properly and treated fairly by
a system which will provide them with the financial support to
which they are entitled and desperately need.
SAMPLE LETTER FROM CLINICAL CHAMPION OF ONE
OF THE UK'S CLINICAL NETWORK CO-ORDINATING CENTRES FOR M.E./CFS
IN SUPPORT OF A BENEFITS APPEAL
In responding to the Call for Evidence for Professor
Harrington's Review, Action for M.E. was able to submit just under
30 sample letters from specialist doctors written in support of
a person with M.E. who applied for ESA. This letter is given as
just one example of the consequences which can occur when the
I am writing in very strong support of this patient's
appeal against refusal of ESA, as informed in a letter to her
of 18 June, 2010.
This patient is under my clinical specialist care
for Chronic Fatigue Syndrome (CFS/ME) and has been so since January
2008, with her last assessment in February of this year. She has
in fact had periods of illness for very many years, but has had
episodes when she has functioned better and other episodes when
she had significant deterioration and greatly reduced function
and disability. From time to time she has also had co-morbid depression.
My diagnosis in January 2008 not only related to her present situation,
but also as an interpretation of her illness phases in previous
time. She is somebody who has high expectations of herself and
has tried to overcome her illness and her reduced functioning
by maintaining as high a level of activity as she can over a long
period of time. Regrettably her illness has reached a point where
she has had to acknowledge that in order to maintain sustainable
functioning and to give herself the prospect of improving her
health in the long-term, she needs to set a lower level of activity
that does not cause detriment. Her previous trajectory of illness
was one of repeated bouts of illness and indeed a progressive
tendency to deterioration by attempting to function within the
work place at a level that she could not sustain. Recommendations
in her treatment have been geared to aligning her sustainable
functional capacity to match more closely her illness, not only
in terms of the short-term effects, but also in terms of the longer-term
impact on potential recovery and rehabilitation. Over the period
that I have been seeing her this has meant that she has had to
stop working for a prolonged period and has still not been able
to regain the level of functioning that would be compatible with
actual return to work, despite her best intentions and best efforts.
Against that background we now have an ESA assessment, which gives
her zero points across physical and cognitive domain of functioning.
It is hard to credit that somebody has been assessing the patient
that I know in making such a judgement. Sadly this type of misjudgement
is all too frequent and represents a failure to represent in the
scoring system and the considerations that lead to that scoring,
the effect of multiple functions and repeated function in any
domain of activity, in a holistic sense. Moreover, it fails to
take account of the impact of functioning above a sustainable
baseline. In the case of Chronic Fatigue Syndrome (CFS/ME) this
leads to a typical pattern of increased symptoms and increased
disability in the day or days following the increased activity,
further undermining the person's health at the time, but also
through the biological impact of that, having a detrimental effect
on her health and functioning in the longer-term. Wide experience
with this clinical condition has shown me that patients who regularly
exceed their sustainable capacity, do undoubtedly undermine their
longer-term prospects for recovery. I am well aware that assessments
for benefits are supposed to take account of the longer-term impact
of activities on health and functioning, as well as their more
immediate impact. It is evident that this has not been taken into
account in this case, otherwise the scoring system would be totally
At a very straightforward level this patient is clearly
incapable of work at any level, of any sort, at the present time,
as a result of her disabling illness. She is undergoing a treatment
programme that is geared to stabilising her function and enabling
her to improve, so that in due course she will be able to return
to suitable and appropriate work. In my very wide experience and
professional judgement, she is not capable of work and indeed,
that she would be eligible for ESA on any normal interpretation
of Personal Capability Assessment if done correctly. Only by a
formulaic and narrow interpretation of the process of Personal
Capability Assessment and without referencing one domain to another,
or looking at repeated affected functioning, could such an absurd
score have been arrived at. Sadly this is a very frequent occurrence
and seems to represent a substantial systems failure, or a failure
of training and application.
From my wide experience of these sorts of problems
and of this clinical condition, I could clearly identify ways
in which she would score more than sufficient points on physical
and cognitive domains to be shown to be eligible for ESA and I
would strongly urge that her ESA application is accepted. At the
moment the failure to grant this coincides with a deterioration
due to other factors and undoubtedly is likely to trigger further
deterioration due to the upset and distress caused by a manifest
I hope the matter can be rectified soon and I would
be happy to answer any specific questions that may arise, that
would assist in that process.
72 http://www.parliament.uk/business/committees/committees-a-z/commons-select/work-and-pensions-committee/inquiries/migration-from-incapacity-benefits-to-employment-support-allowance/ Back