Knock, knock ,knocking on Officialdom's door

If it scares you its probably the right path “, says Mark Gerzon. We had no choice but to issue our own notice of non-compliance with the NHS’s suggested compromise yesterday, my wife and I , as independent members of the consultation group.

I am not sure what path the rest of the group is going down; it could go either way. But here we are, on our own again and there is much to be said for that in terms of cutting down stress and expenditure of precious energy. So much of our time recently has been spent trying to negotiate with other group members, at enormous cost to my wife and I - for any stress can be absolutely devastating in ME. This is a real issue in ME campaigning.

So, here we go. On a journey to explore the NHS’s new complaints procedure; it could be that my wife is far too ill to get far. We will see.

As Hugh Marriott puts it : “Nobody ever tells us (carers) how to keep on knocking at Officialdom’s door without becoming suicidal in the process.” (The Selfish Pig’s Guide to Caring, Time Warner, 2003, p.329)


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