‘CFS/ME not a mental health disorder’, Minister for Welfare Reform tells Countess of Mar, 21 November 2011

The Countess of Mar this week published an exchange of correspondence she has had with Lord Freud, the Minister for Welfare Reform at the Department for Work and Pensions.

In his letter to the Countess, Lord Freud apologises unreservedly for his Department’s mishandling of correspondence from Professor Malcolm Hooper, clarifies that the DWP does not classify CFS/ME as a mental health disorder, discusses his department’s CFS/ME training module and explains why nurses are used to assess individuals with the illness.

But he makes no comment on the new International Consensus Criteria for M.E. which were published in the Journal of Internal Medicine on 20 July 2011 – a copy of which was passed to him by the Countess.

EXCHANGE OF CORRESPONDENCE

To: Lord Freud
Minister for Welfare Reform
House of Lords

2 November 2011

Thank you very much indeed for addressing the Forward-ME group last week. We found your presentation and responses to our questions most helpful.

I apologise in advance for pestering you still further on the matter of CFS/ME, but I would be most grateful if some serious attention could be given to the attached ‘history’ and a proper response provided. It seems clear that there is some reluctance on the part of the DWP correspondents to give a scientifically accurate response to Professor Malcolm Hooper. People with CFS/ME and post viral fatigue syndrome (as opposed to those with a diagnosis of CFS) are being done an injustice in that they appear to continue to be unfairly discriminated against by the DWP and HMRC who depend upon the DWP for guidance.

I also enclose a copy of the peer reviewed paper: Myalgic encephalomyelitis: International Consensus Criteria B.M. Carruthers et al, Journal of Internal Medicine 2011;270:327-338. 28 international experts with over 400 years of experience of people with ME between them surely cannot be so wrong!

I look forward to hearing from you.

Countess of Mar


From: Department for Work and Pensions, Caxton House, Tothill Street, London SW1H 9DA

To:
Countess of Mar
House of Lords, Westminster, London SW1A 0PW

21 November 2011

Dear Margaret

I am responding to your letter of November 2 which included two attachments – a ‘history; note of Professor Malcolm Hooper’s correspondence with the Department and a aper entitled “Myalgic Encephalomyelitis: International Consensus Criteria”. Your correspondence raised a number of important concerns about how the DWP assesses CFS/ME, and I apologise if the Department’s position has appeared unclear up to now. However, I hope to address the issues which you have raised below.

First, let me apologise unreservedly for the handling of Professor Hooper’s correspondence. Your comments regarding the handling of the correspondence from Professor Hooper were passed to the Head of the Ministerial Correspondence Team, Mr Goff Daft. He has reviewed the process that was follows and fully acknowledges that the handling of Professor Hooper’s correspondence fell short of the standards expected. For that, Mr Daft offers his unreserved apology. In line with the Permanent Secretary’s requirements, all response from officials in the Ministerial Correspondence Team are now issued over Mr Daft’s name and official position.

DWP recognises CFS/ME as a real and potentially significantly disabling condition. The assessment of individuals with CFS/ME, or indeed any other condition, is not dependent on the condition itself, the underlying cause of its classification but rather on the disabling effects. The Department of Health has indicated that they have “always relied on the definition set out by the World Health Organisation in its International Classification of Diseases (ICD) under ICD code 93.3, subheading other disorders of the brain”. The DWP is in agreement with this views.

Therefore, for the avoidance of doubt I can be clear that the Department does not classify CFS/ME as a mental health disorder. The asterisk next to CFS/ME in the Incapacity Reference Guide (IRG) is not as an indicator of its classification, but rather to alert decision makers to the fact that a proportion of people with CFS/ME have symptoms related to altered mental function. Mental health condition and those that have mental function impairment as a feature are highlighted in the IRG so that appropriate safeguards can be put in place. These safeguards include not automatically rejecting a claim to benefit should an individual fail to return the related questionnaire, together with procedures for additional contact with the claimant during their application if required.

It is clear, as highlighted in the correspondence, that there are a few conditions that also require this flag but do not currently have one. We are grateful yo you for bringing this to our attention and will be updating the IRG to reflect this.

Moving now to our guidance for doctors and decision maker, this has been developed to reflect a broad consideration of the available evidence and the main principle is to assess how any conditions affect each individual who is making a claim for benefit. The ‘history’ note states that “the DWP Medical Services Training and Development on Chronic Fatigue Syndrome are clear: Most case of chronic fatigue syndrome (sic) are attributable to abnormal illness behaviour… in fact, most with CFS will also meet the criteria for a current psychiatric disorder. However, this is inaccurate.

The CFS/ME training module begins with a self assessment exercise which it clear states is to test perceptions of CFS/ME. One of the questions it poses to healthcare practitioners us ‘Most cases of chronic fatigue are attributable to abnormal illness behaviour’; practitioners may answer yes, no or don’t know. This is not presented as a statement of fact but rather as an exercise to address any erroneous pre-concerned ideas that healthcare practitioners may hold about the condition. After reading the content of the module, practitioners are then asked to repeat this exercise to review their views in light of the information that is given to them. In addition, the reference to ‘most patients with CFS will also meet the criteria for a current psychiatric disorder’ was removed at the last review of the CFS/ME training module.

You have asked why nurses assess individuals with CFS/ME. The Government’s contract with Atos Healthcare required that doctors are used to assess claimants with conditions that are likely to have complex central nervous system examination findings. The majority of claimants with CFS/ME do not exhibit such signs and therefore CFS/ME is not on the list of conditions that are required to be assessed by a doctor. However, if a claimant with CFS/ME has neurological signs, they will be passed to a healthcare professional with the requisite expertise.

Once again I must apologise for the delayed response to your queries. The department endeavours to daily assess all individuals with CFS/ME and I hope that this response clarifies the department’s position.

Yours sincerely

David

Lord Freud, Minister for Welfare Reform


Professor Hooper and the DWP – the ‘history’, by Margaret Williams, 1 November 2011