Formal complaint to the National Health Service Information Authority


Posted 19th February 2004

16th February 2004

Dear Sir/Madam

Re: Inaccurate classification of chronic fatigue syndrome (CFS) in Mental Health Minimum Data Set (MHMDS)

This is not the first time that I have pointed out to the NHSIA that CFS is not classified as a psychiatric illness by the World Health Organisation and that it has been placed under the wrong ICD code in Section 27.1 of the MHMDS on the NHSIA website.

This is a very serious administrative error which I understood was going to be corrected. However, nothing has ever happened. And an important and unacceptable practical consequence of the continuing inaccurate WHO classification of CFS as a psychiatric disorder is the fact that people with this illness are being denied benefits on the grounds that they have a mental health disorder - even though there may be no clinical evidence of any psychiatric illness being present. In fact, only last week I was presented with yet another case of a person with CFS being informed that his private health insurance payments would now cease as the company have decided to regard CFS as a mental health problem (and hence part of their contractual exclusion clause relating to mental disorders).

I am therefore submitting a formal complaint about the NHSIA inaccurate classification in the hope that some urgent action will now be taken.

If you look at the table (ICD10 Primary Care Version Diagnoses and Codes) in Section 27.1 of the MHMDS you will see that CFS has been listed under the the psychiatric code F48 (along with the largely abandoned diagnosis of neurasthenia) whereas it should actually be indexed to the neurological chapter of ICD10 and listed under G93.3.

I am also raising this matter once again as it has been the subject of recent correspondence between the Countess of Mar and Lord Warner, Parliamentary Under Secretary of State at the Department of Health. The response from Lord Warner to the Countess of Mar dated 11 February makes it quite clear that both the WHO Collaborating Centre here in the UK and the Department of Health believe there is only one code for CFS: under neurological disorders in G93.3 and not under psychiatric disorders in F48.

Furthermore, in a statement also issued on 11 February, the WHO Collaborating Centre at the Institute of Psychiatry, King's College Hospital have unambiguously confirmed that CFS should be listed under G93.3 and that this clarification regarding classification will be included in the next UK Edition of the the WHO Primary Care Treatment Guide.

And as the Department of Health now acknowledge that CFS should be officially classified as a neurological rather than mental health disorder, it should now be removed from the MHMDS altogether.

I can supply a copy of the letter from Lord Warner and the statement from the WHO Collaborating Centre if you have not yet seen them.

I await your response with interest.

Yours sincerely

Dr Charles Shepherd
Medical Adviser

ME Association
4 Top Angel
Buckingham Industrial Park
MK18 1TH

copy: Countess of Mar, House of Lords

A reply was received by e-mail later in the day (16th February) from Steven Harrison, Head of Corporate Affairs, NHS Information Authority, acknowledging Dr Shepherd's complaint and giving assurance the complaint would be investigated as quickly as possible and a response sent.
Update: Mr Harrison's response has been received and appears above.

See also DoH and Institute of Psychiatry clarify classification of ME/CFS 14/2/04.