How to Complain ???

"You get all these statements of intent to help, have these meetings, fill in dozens of multi-page forms, and then nothing happens. Except more talk, more forms and endless waiting."
(Bernard, a carer, in "The Selfish Pig's Guide to Caring, Hugh Marriott, Time Warner, 2003, p. 119.)

....my heart sinks.

Some initial research reveals that the old NHS Complaints procedure was badly in need of reform - and , thank the Lord, it has been.

The problem, when contemplating going down the Formal Complaints road, is that ME is completely unlike any other disease in the way it has been misrepresented and manipulated by the medical insurance industry; the issues are complex and require sophisticated understanding.

Added to that I have to take into account my wife's ability to deal with any complaints procedure - for it WILL make her health worse. Is it worth the cost ?

In my mind, the only way to advance the ME cause and ultimately to get some tests and treatment , is :

1. Focus upon the severely affected.
2. Be prepared to go all the way to the very, very top.

Okay then, let's see :

Under the brand new NHS Constitution (http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx) apparently , you can :

  • have your complaint dealt with efficiently, and properly investigated,
  • know the outcome of any investigation into your complaint,
  • take your complaint to the independent Parliamentary and Health Service Ombudsman if you're not satisfied with the way the NHS has dealt with your complaint,
  • make a claim for judicial review if you think you've been directly affected by an unlawful act or decision of an NHS body, and
  • receive compensation if you've been harmed.
The Government would like us to look upon the NHS Constitution as a Bill of Rights , such as the right to care (http://news.bbc.co.uk/1/hi/health/7839341.stm). Well, that is very interesting indeed, in terms of ME - for there simply is NO care for the most severely affected. NICE doesn't even recommend its risible CBT and GET for this patient group.

However NICE , shamefully, PROSCRIBES (http://www.meactionuk.org.uk/Corporate_Collusion_2.htm) doing any of the tests that would show what's going wrong, for example in my wife's body these last 16 years and counting.

...so much things to say right now (Bob Marley)

So, okay : where to start ?

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