The ME Association has made a recent release about the latest draft (version 8) of proposed new medical guidance on ME/CFS for use in assessing applications for DLA and Carer's Allowance:

"uesday, April 11, 2006

Proposed new medical guidance from the DWP – MEA statement

MAY BE REPOSTED

Along with several other ME/CFS charities involved in the consultation process, The ME Association has been considering the latest draft (version 8) of proposed new medical guidance on ME/CFS for use in assessing applications for DLA and Carer's Allowance.

This has been prepared following the meeting held in October 2005 at which the DWP agreed to a substantial rewrite of the guidance to take account of the objections and concerns being made.

The MEA is still unable to endorse what is being proposed by the DWP and has therefore asked for another meeting to discuss our continuing objections and concerns.

A copy of the first part of our response that was sent to the DWP last week is enclosed with this statement. We have agreed to respect the confidentiality arrangements of taking part in this consultation process - so we are not including any of the specific points we made at this stage as this would involve quoting from the draft.

Further information on the MEA role in the consultation process over the past year can be found in the blog news item archives on MEA website and in all recent issues of ME Essential.

RESPONSE TO DWP SENT ON FRIDAY 7 APRIL

Dear ......

I have now had an opportunity to consult with ME Association trustees and produce a response to version 8 of the proposed new medical guidance on ME/CFS in relation to applications for DLA and Carer's Allowance.

Before explaining why the MEA is still unable to endorse the latest draft, I feel it is necessary to return yet again to the reasons why we feel so strongly about the need to produce unambiguous medical guidance that will make a significant difference to the lives of those people with ME/CFS who currently have great difficulty, or no success at all, in obtaining either component of DLA.

Our experience as a leading patient support charity is that people with moderate to severe ME/CFS, who may well be entitled to DLA mobility and/or care allowance, are continuing to have their applications refused because some medical examiners believe that this illness (a) is not genuine, (b) is not physical, (c) cannot cause the degree of disability that is claimed. And not only are perfectly valid applications being turned down on these grounds. We are also aware of existing claimants who are finding that their DLA is being terminated. In both cases someone who is sick and disabled then has to proceed through the highly stressful and bureaucratic process of going to appeal in order to have their benefit granted or returned. The high level of success on appeal in relation to DLA indicates that something is very seriously wrong with the current assessment system. The MEA believes that the only way of dealing with this is for the DWP to produce medical guidance which clearly states that ME/CFS is a genuine physical illness that can lead to severe levels of disability.

During the course of the discussions and meetings over the past year I have come to the conclusion that the DWP does accept that there is a serious problem. And after the last meeting in October I came away with the firm impression, as did my colleagues representing other ME/CFS charities, that our criticisms of previous drafts had been taken on board and that the draft we are now considering would be a major improvement.

Sadly, having carefully considered the latest draft, the MEA believes that certain key parts remain seriously flawed. We are therefore unwilling to endorse the document and are asking for a further meeting because we do not believe that these concerns can be dealt with by email discussion. Our understanding is that we are not alone in being unable to endorse the latest draft and that some of the other charity representatives involved in these discussions have very similar views.

At this stage we feel it would be more helpful to briefly outline why we have reached this decision. We can, of course, produce a paragraph by paragraph assessment pointing out where we feel that specific changes and rewording still need to be made.

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The MEA then goes on to comment on a number of specific areas - definition of the illness, causation, clinical assessment, management issues, and descriptions of the spectrum of severity as it affects care and mobility - where we believe the guidance still has some serious defects.

We conclude by stating:

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Involving patient representatives is a core principle of new government initiatives on health, and we fully acknowedge the way in which the DWP have followed this advice. But to fail to recognise the concerns of several, possibly almost all of the charity representatives involved in these discussions, would be a major step back.

In conclusion, we still find this guidance unacceptable and believe that a further meeting with charity representatives will have to be arranged.

[Posted by Dr Charles Shepherd, Medical Adviser MEA]

ENDS"