In response to the announcement that an independent review of the WCA (a key part of the Employment and Support Allowance) was to take place, The ME Association has prepared this submission.
It is a very comprehensive account of the various problems faced by people with ME/CFS when trying to claim the new Employment and Support Allowance (ESA).
Our submission also addresses the growing concerns being expressed by people who are currently claiming Incapacity Benefit, who will be re-assessed under the much stricter eligibility criteria for ESA as from October 2010 onwards.
More information on the independent review being carried out by Professor Michael Harrington can be found here.
SUBMISSION OF EVIDENCE FROM THE ME ASSOCIATION
This is the submission from The ME Association to the Independent Review of the Work Capability Assessment – a key component of the Employment and Support Allowance.
THE ME ASSOCIATION
The ME Association (MEA) is a national charity that provides information and support for people who have ME (myalgic encephalomyelitis/encephalopathy) – an illness that is also known as chronic fatigue syndrome (CFS) and post-viral fatigue syndrome (PVFS).
ME/CFS is thought to affect around 250,000 people in the UK. It affects all age groups, including children and adolescents. The most common age of onset is between 20 and 40 years of age.
ME/CFS is recognised as a neurological disorder by the World Health Organisation (in section G 93.3 of ICD10) – a classification that is accepted by the Department of Health.
The main symptoms include exercise-induced muscle fatigue and weakness; post-exertional malaise/symptom exacerbation; cognitive dysfunction involving memory, concentration, attention span, information processing etc; orthostatic intolerance – difficulty with tasks that require standing; pain – which can affect muscles, joints or nerves, and on-going infective or flu-like symptoms.
Official reports into the illness – from the Chief Medical Officer, Medical Research Council, NICE, Royal Medical Colleges – have all recognised the serious and persisting ill health and disability that is caused by ME/CFS.
Around a quarter of all people with ME/CFS fall into the severely affected category – meaning that they are housebound, wheelchair-bound or bed-bound.
Research into prognosis indicates that only a small minority of people with ME/CFS return to normal or near normal levels of health. Most people experience a significant degree of long term ill health and disability.
The Department of Work and Pensions (DWP) has also made it clear on numerous occasions that it fully recognises the serious ill health and disability associated with ME/CFS and that, where appropriate, people with this illness are fully entitled to the full range of DWP sickness and disability benefits. The DWP has also identified the need for specialist guidance for assessors to follow in relation to Incapacity Benefit (ICB) and Disability Living Allowance (DLA) applications – in particular problems affecting mobility and cognitive function.
However, our experience as a support charity is that people with ME/CFS have a great deal of difficulty in obtaining sickness and disability benefits when benefit applications are first assessed, or are later re-assessed – even when they are fully supported by their GP or consultant.
Although initial claims are often rejected, there is a high rate of success (around 40%) on appeal – indicating that eligibility criteria and medical assessment procedures are poorly designed for people with this illness.
We have repeatedly brought our longstanding concerns about the unsatisfactory way in which people with ME/CFS are being medically assessed for DWP benefits in meetings with both the Rt Hon Yvette Cooper (former Secretary of State at the DWP) and with Dr James Bolton, Deputy Medical Adviser at the DWP – as has the All Party Parliamentary Group (APPG) on ME.
EMPLOYMENT AND SUPPORT ALLOWANCE (ESA)
We understand from recent press reports that around 75% of people claiming the recently introduced ESA are being refused; around 14% are being placed in the ‘work-related activity group’ and only 6% are being accepted as genuinely unfit for work.
Our experience and feedback in relation to people with ME/CFS indicates that the refusal rate here is probably even higher than 75% with very few people reporting that they have been able to obtain ESA.
A changeover from ICB to ESA will start in October this year. This will involve a reassessment of employability for people currently claiming ICB through the use of the WCA.
THE WORK CAPABILITY ASSESSMENT
The first part of the WCA determines whether or not people are entitled to ESA.
The second part determines whether people should join a ‘support group’ or a ‘work-related activity group’.
The third part provides a report that can be used in relation to work-focussed interviews that are arranged.
The first part of the WCA, which assesses whether a claimant has limited capacity for work, and whether they are entitled to ESA, involves a points-related assessment of physical functioning, mental health, and cognitive functioning – all of which relate to a range of activities. Points are awarded on the basis of any limitations relating to each activity and added the sum compared to the established ‘pass’ scores.
The assessment focuses on capabilities involving a variety of tasks at single incidences and then assumes that this capacity can be repeatable throughout a period of work without any adverse consequences. No specific questions are asked about the time it would take for the person to carry out the task or how long they would be able to carry on repeating the task. The key point is whether the claimant can perform the task on one occasion.
This is the area where our major concerns lie in relation to how the WCA applies to people with ME/CFS – in particular the fact that the assessment does not take into account a number of factors which are very relevant to the continuing ill health and disability experienced by people with ME/CFS.
Our key areas of concern, which we discuss in more detail below, are:
- variability of ME/CFS symptoms
- inability to sustain physical and mental performance for more than a short period of time – even though a person with ME/CFS may be able to carry out the specific tasks involved in a WCA assessment on a one-off basis.
- a points scoring system that fails to take account of key ME/CFS symptoms such as fatigue and pain
- a points scoring system that fails to ask appropriate employment-related questions where they do partially relate to ME/CFS
- a points scoring system that concentrates on household tasks rather than work-related tasks and fails to take any note of the type of employment that the claimant normally undertakes.
- a failure to take note of, or even not believe, what people with ME/CFS are reporting in both written submissions and when they are being assessed or examined by health professionals employed by ATOS.
PROBLEMS WITH THE WORK CAPABILITY ASSESSMENT
The ability to take part in any form of work on a regular basis normally involves being able to sustain a satisfactory degree of mental and physical capacity throughout a period of up to eight hours on a consistent day to day basis.
Even the most limited form of work requires being able to sustain a degree of mental and physical capacity at regular intervals throughout each week, including activities secondary to the actual work (eg travel to work) and those aspects of self-care which cannot be assumed to be carried out by any partner or family member. For someone with ME/CFS, who may no longer be able to drive a car and so rely on public transport, the very effort of getting to work may take up most of their available energy for that day.
These points are highly relevant to the claimant’s capacity for work, or work-related activities, whether on first being off work (when it would normally apply to their usual occupation) or at any later stage (when it may apply to other types of occupation).
Variability of symptoms
One of the key characteristics of ME/CFS is that the symptoms fluctuate in severity – from hour to hour, day to day, and month to month. This makes any sort of regular commitment and forward planning extremely difficult.
We therefore believe that a failure to ask about, properly assess, and record the variation and fluctuation in symptom severity during the medical assessment is a major defect in the WCA.
Ability to sustain physical and mental performance and so be able to carry out tasks on a regular and repeated basis
The second key characteristic of ME/CFS is the fact that while people may be able to perform a range of physical and mental tasks on a one-off basis, as assessed in the various questions in the point scoring exercise and in physical examinations, they are not able to repeat the physical tasks on a regular basis throughout the day, or sustain a degree of normal mental functioning over long periods of time.
In relation to physical tasks, this is often due to a combination of fatigue, weakness, pain, balance problems, orthostatic intolerance and safety.
In relation to mental tasks, this is normally due to the fact that cognitive function (ie problems with short-term memory, concentration, attention span, information processing) starts to decline following mental activity and then takes a much longer period of time for it to return to the previous level.
We therefore believe that if a person is not able to sustain and/or repeat a particular physical task on a regular and satisfactory basis over a suitable period then they should reasonably and legally be regarded as not being able to perform it.
Equally, if a person cannot usefully resume the performance of tasks that require appropriate and reliable cognitive functioning, they should also be regarded as not being able to perform the task.
Failure to take account of key symptoms such as fatigue and pain
Although the WCA points scoring system takes some account of the restrictions on mobility and cognitive dysfunction that commonly occur in ME/CFS, it fails to allow measurement of the results of symptoms such as fatigue, pain, problems with balance, orthostatic intolerance, and simply feeling ill all the time. As a result, people with ME/CFS are unable to score points in relation to a range of disabling symptoms that are all relevant to their ability to carry out meaningful work-related activities.
Failure to ask the right questions in relation to ME/CFS symptoms
Where the points scoring system does cover symptoms experienced by people with ME/CFS, it consistently fails to provide answers that are relevant to the situation faced by people with ME/CFS.
For example: Question 1 in the activity section asks about ability to walk with the help of an aid such as a walking stick. It provides a number of options involving a specific distance that someone is able to walk without having to stop or suffer severe discomfort. While some people with ME/CFS will be unable to walk unaided more than 200 metres, and so score points, there are others who are able to walk more than 200 metres on a single occasion but would not then be able to repeat this activity if asked to do so a short time later, or later the same day or following day, and certainly not repeatedly throughout the day. There are few potential situations where a claimant undertaking work-related activities could avoid this activity (and others) at this level, or greater, on a repeated basis.
Failure to take account of the type of employment that is normally undertaken
As already noted, most occupations involve a degree of physical and mental capacity but the mix and type of capacity will vary considerably. For example, someone working on building site will obviously have to sustain a high level of physical activity throughout the day whereas a teacher will have to sustain a high level of mental capacity, as well as the ability to stand for long periods. And the same situation applies to a whole range of occupations: doorman, security person, clerical assistant, shop assistant.
In the case of ME/CFS, exercise-induced fatigue and cognitive dysfunction are clearly going to have a major effect on the ability to pursue many occupations – even at a minimal part-time and flexible basis. And this will apply to both their normal occupation and other types of occupation that they may have to consider.
In relation to any limits on capacity potentially resulting from a whole range of illnesses, the WCA fails to address the sustainability of physical and mental capacities required for even the least onerous work and consequent circumstances, so it is not a robust measure in relation to the potential range of outcomes and responsibilities
Consequently, the failure of the WCA to make any attempt at assessing the type of physical and mental skills that a person will require to carry out their normal occupation, or any other form of work, is a serious omission. And it is clearly not just an issue that is relevant to ME/CFS.
Failure to take note of what people with ME/CFS are reporting in written assessments and questionnaires, at interviews, in examinations involving ATOS, and in reports from their own health professionals.
One of the most consistent features of feedback to The MEA from people who have been turned down for ESA is that they do not feel that their illness is understood by the civil servants and health professionals who are making eligibility assessments.
In medical assessments carried out by ATOS, they feel that information necessary for the correct choice of descriptor option is being ignored or assumed to be untrue, even when reports from medical professionals are shown to support both the written submission on their application and the verbal evidence given at the assessment. In both the incorrect choice of descriptor option, and the lack of appropriate additional comments, or even untrue additional comments made by the medical assessor, the level of error and misrepresentation is unprofessional. This is in addition to the basic inadequacy of single observations as realistic measures of sustainable capacity. This cannot be right. The medical assessor's report is based on one, limited assessment of selected aspects of the claimant's capacity on the day of examination. And the guidance for assessors on understanding complex conditions such as ME/CFS is likely to be more relevant to achieving an appropriate recognition of the claimant's capacity for sustaining work-related activity than the universal WCA which is based on assessments of capacity related to the most common presentations of simple disability / incapacity due to illness.
We also receive regular reports from people who state that their medical report contains significant errors – which obviously raises serious doubts about the credibility of evidence taking by ATOS.
We therefore believe it is essential that information from health professionals with a deeper and longer involvement in full medical assessment of the claimant's circumstances, and consequent understanding of resultant limitations on capacity, are given primary recognition by the assessor. Where such medical information is not available or current, then the general guidance for a named illness should be the primary source for the assessor.
Furthermore, the healthcare assessor’s opinion should not be based on a snapshot of the person’s state of health and ability to carry out a list of specific one-off tasks on the day of the examination. This assessment should consider the effects of the condition over a period of time. In order to do this we believe that it is essential to obtain information from the person’s GP, hospital specialist and any other relevant health professionals who are involved in the on-going management.
We have two further concerns relating to ATOS:
First is that straightforward and transparent procedures should be in place for those people who require a home visit in relation to medical assessments – our feedback indicates that the relevant information is difficult to find and the process of arranging a visit therefore becomes frustrating and complicated.
Second is the arrangements that exist between the DWP and ATOS and the widespread belief that staff employed to carry out these assessments are either under pressure to meet targets in relation to the various outcomes, or are receiving incentives to meet these targets. Once again, this cannot be right.
The MEA supports the targeting of benefits to those with genuine limits on their capacity. But this has to involve an assessment process that is transparent, fair and relevant to the condition being assessed. In the case of ESA and WCA this is clearly not the case when it comes to ME/CFS.
We have listed what we believe are a list of crucial issues that must be addressed in this independent review.
Many of the issues are not just confined to people with ME/CFS and we are sure that you will receive submissions making very similar points from people with other illnesses – such as multiple sclerosis and rheumatoid arthritis – where there is fluctuation in severity and a failure to sustain the type of snapshot activities that are asked about in the WCA.
The WCA form may appear simple and universal to those deciding policy for assessment, but many claimants are faced with a selection of reporting opportunities that do not relate to their experience of their illness and disability, and which they are unable to use to clearly explain the full basis for their claim. The government departments and agencies involved here have routinely claimed that their assessments of capacity are separate considerations from medical assessments, but an assessment of capacity is necessarily just a different viewpoint of the same balanced medical assessment that is needed to determine diagnosis and treatment. This false dichotomy has resulted in a process which is more likely to lead to error than correct resolution in complex cases.
The WCA is, like its predecessors, overly simplistic in what it actually measures and reports back, and has been the vehicle for much inefficiency and abuse by the Benefits Agency and its contractors.
In its current form the WCA is an extremely unreliable way of assessing fitness for work in people with ME/CFS. Consequently, many of our members feel that the wording and language used in the questionnaires and descriptors has been constructed so as to deliberately exclude people with illnesses such as ME/CFS – a point which we feel sure cannot have been the actual intention.
With regard to the changeover from ICB to ESA, a process which many people with ME/CFS are now extremely worried about, this should be delayed until the results of the independent review have been published. We believe it is unacceptable to go ahead with this changeover given the concerns we have expressed about the way in which the WCA is being used in the case of ME/CFS.
Finally, much more thought also needs to be given, along with appropriate action by government, to introducing some form of sliding scale of benefits for people who are only able to attempt to return to work on a flexible, erratic or part-time basis.
We therefore hope that the independent review will recommend changes to the WCA that will once again allow people with ME/CFS, who are genuinely unfit for work, to claim and receive a benefit that they should be entitled to.
Dr Charles Shepherd
Hon Medical Adviser
The ME Association
7 Apollo Office Court, Radclive Road, Gawcott, Buckinghamshire MK18 4DF
Tel: 01280 818964
3 September 2010