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Please help me make a stand

As some of you may be aware, Dr Luis Nacul, a well respected ME specialist, will be providing limited care for moderate & severe ME patients in Suffolk. This is great news, thank you Suffolk CCG (Clinical Commissioning Group) for taking ME seriously.

BUT Unfortunately all the Norfolk CCGs had an opportunity to commission care from Dr Nacul but they rejected his offer. The Norfolk CCGs decided they would not pay for the new service with consultant, and one CCG also said there was a “conflict of Interest” when Dr Nacul offered his services for a “cost neutral solution”. The Norfolk CCGs have consigned ME to a “minor community service” and will not allow it to be discussed in public nor allow the minutes to be released from their clinical exec.

For years patients were told that a significant barrier to improving care was the lack of specialist expertise. Dr Nacul delivers this expertise in spades but his services have not been taken up by Norfolk CCGs.

What makes this decision even worse is that in his feasibility assessment Dr Nacul determined that service improvement was cost neutral.

Service from the current provider, East Coast Community Healthcare, is inadequate and lacking clinical expertise and ongoing care. In 2009 the PCTs (Primary Care Trust) promised to remedy the deficiency in service. This promise was reiterated in 2013 by the CCGs Inequalities of care for ME patients have been recognised by the NHS but not addressed.

It is over 10 years since the service development process began and it has been clearly established what patients want from their local service. Significant inequalities of care remain. The inadequacies of service provision in Norfolk and Suffolk need to be addressed.

I am frustrated and angered by the Norfolk CCGs decision and have decided to submit a formal complaint, and I urge you to do the same. We need to make a stand and together we can make a difference.

I have compiled an easy to follow guide about how to submit a complaint to your local Norfolk CCG, including a letter template which you can copy, paste and edit. You don’t need to be an ME patient to submit a complaint; carers, family and friends of ME patients can also get involved.

I have also written to my local paper (Eastern Daily Press) and my local Norwich MP (Chloe Smith) but I’m yet to receive a response. If you are as angered by this decision as I am, please help me make a stand; we have strength in numbers. Thank you.

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