The DWP medical guideline for DLA decision makers on ME/CFS
The tenth and final version of the Department for Work and Pensions guideline on M.E./CFS is published today, 20 July 2007.
Action for M.E. does not support the DWP guideline.
We reject the basic approach in which “evidence-based medicine” principles have been too narrowly applied in circumstances where so little research evidence is available. Too much weight has been given to a small number of unrepresentative Randomised Controlled Trials. The results of these trials have been extrapolated to make invalid claims about the effectiveness of Cognitive Behavioural Therapy and Graded Exercise Therapy. The experience of patients and experienced clinicians has been largely ignored.
The methodology is inconsistent with fundamental principles stated in the Government’s own policies, including:
1. The National Service Framework for Long Term Conditions, which states that: “Randomised Controlled Trials and other quantitative methodologies are not necessarily best suited to research questions involving long term outcomes, varied populations with complex needs and assessment of impact on quality of life rather than a cure.”
2. Patient-derived evidence has been given so little credence as to marginalise the patient voice. This contravenes the central principle of the White Paper, ‘Our Health, Our Care, Our Say,’ which puts the patient at the heart of the NHS.
3. The imbalance of the document will in practice tend to reduce patient choice of treatment in contravention of a key tenet of NHS and Government policy as set out in the Department of Health document, ‘Choice Matters – Putting Patients in Control’.
4. The definitions of moderate and severe conditions are wholly inadequate and have completely ignored the advice given by Action for M.E. and other M.E. organisations. This leads to a high risk that people with M.E. will encounter even greater difficulty than they do now in obtaining the allowances and support to which they are entitled and which they desperately need.
5. Action for M.E. would wish that this guideline be withdrawn; a view shared by virtually all the other M.E. organisations.
6. However, if the DWP nevertheless decides to ignore our very strong advice, then we will use our membership and wider contacts with people with M.E. to monitor very closely implementation by DLA officials. If there is any evidence of the guideline resulting in people with M.E. experiencing greater difficulty in making claims or getting poorer support, then we will campaign very vigorously for the guideline to be amended appropriately or withdrawn.
20 July 2007
A full copy of the DWP medical guideline for DLA decision makers on ME/CFS can be read on ME Agenda here