Friday, October 14, 2005

Draft DWP guidance - still not good enough

Along with representatives from AfME, BRAME, Tymes Trust and the 25% Group, the ME Association will be attending a crucial further meeting at the London headquarters of the Department of Work and Pensions (DWP) on Monday 17 October. This is to discuss a revised draft containing medical guidance on ME/CFS that is being prepared for benefit decision makers, in particular those involved in assessing DLA claims.

The MEA made it clear to the DWP that the original draft we received at the end of the meeting in June was completely unacceptable. We also asked for it to be rewritten by a new group of health professionals, including at least one neurologist and a medical adviser to one of the national charities (the current group consists of three psychiatrists; one rheumatologist; one GP; one physiotherapist and one occupational therapist). A copy of our response at the time, along with follow-up correspondence involving the DWP is available in the June and July archive section of the news blog of the MEA website. Click on this link to access the website: MEA website

The revised draft appears to have been written by the same group of health professionals, possibly with some external advice, and although some of the very unhelpful comments in the original draft have now been either removed or changed, we still cannot endorse this guidance for the following main reasons:

1 The overall presentation of content remains muddled.

2 The guidance fails to provide an adequate description of the whole range of symptoms that constitute this illness and contribute to the resulting disability. Far too much emphasis is still being placed on the symptom of chronic fatigue.

3 There is an inadequate description of the process of clinical assessment, diagnosis, and the problem of misdiagnosis.

4 Some parts are still far too biased towards the psychosocial model of causation and treatment – in particular the largely uncritical reviews of graded exercise and cognitive behaviour therapy.

5 The guidance provides a very inadequate, and in places inaccurate, picture of the disability caused by, and the needs associated with moderate to severe ME/CFS.

6 It fails to acknowedge the difficulty that many people still have in obtaining appropriate advice on both diagnosis and management in primary and/or secondary care in certain parts of the UK - Wales in particular.

This will probably be the last opportunity for several years for charities representing people with ME/CFS to obtain medical guidance for benefit purposes that will help to reverse the current scandalous situation whereby far too many genuine claimants are being refused DLA and are only succeeding by going through long complicated appeal procedures.

Consequently, the MEA is not prepared to endorse any new medical guidance that we believe is going to be unsuitable or unhelpful for this purpose.

Our position at the meeting on Monday will therefore be to once again call for a fresh start on this medical guidance with a new group of health professionals that is not biased towards psychiatric opinion.