Migration to ESA

ESA 49

Written evidence submitted by Action for M.E.

About M.E.

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 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 group.

About Action for M.E.

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.


Introduction

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 [1] (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 Work Capability Assessment (WCA)

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:-

1. Inadequate 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.

2. Unfounded 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 "looks well."

3. Insufficient understanding of and training in up-to-date data on M.E. by assessors and decision-makers including medical staff.

4. Unrealistic expectations on claimants with M.E.to find and sustain work over time.

5. The 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 is attached to this submission for ease of reference.

On 23 November 2010, Professor Malcolm Harrington published the first independent review of the WCA. [2] The report highlights a number of problems which have been experienced by new applicants for Employment & 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. [3] 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:

1. The 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

2. As ESA is rolled out to current Incapacity Benefits claimants a very much larger number of people with M.E. will have to undergo assessment

Migration from 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 inconvenience.

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 shows that the Department for Work and Pensions (DWP) and Atos can do better if they so decide.

Recommendation

Our main recommendations to the Select Committee are to press the DWP to:-

· expedite its work to develop a more accurate and appropriate assessment process for people with M.E. and similar neurological conditions.

· justify 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 conditions

· Give 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.

April 2011
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 [4] , 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 system fails:

To Whom It May Concern:

Dear Sir or Madam

Re ESA

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 different.

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 misjudgement.

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.


[1] http://www.parliament.uk/business/committees/committees-a-z/commons-select/work-and-pensions-committee/inquiries/migration-from-incapacity-benefits-to-employment-support-allowance/

[2] http://www.dwp.gov.uk/docs/wca-review-2010.pdf

[3] http://www.dwp.gov.uk/docs/wca-review-2010-response.pdf

[4]