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 In this post I will explain how to complain to your Norfolk CCG about their decision not to commission specialist services for ME patients. I have included the contact details for all Norfolk CCGs and a copy of the letter of complaint I have sent. I am happy for anyone to use my letter as a template; just copy, paste and make the necessary edits. I have highlighted the areas that require edits using brackets.

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 detailed the reasons why I’m submitting a complaint, and why I urge you to do the same, in this post (Please take a moment to read this post)

  • You can submit a complaint via your local CCGs website under the ‘complaints/compliments’ section or you can post your complaint to address shown below (see Norfolk CCGs contact details section)
  • You can either write your own complaint letter or use mine as a template.

COPY OF MY LETTER OF COMPLAINT:

[To: Tracy Williams (Chair)]

NHS South Norfolk Clinical Commissioning Group, Lakeside 400, Old Chapel Way, Broadland Business Park, Thorpe St Andrew, Norwich, NR7 0WG.

[Date]
Complaint Re: ME CFS Services in Norfolk.

Dear [Tracy Williams.]

I am writing to you to register a complaint regarding:

1. [Norwich] CCG’s decision not to commission a biomedical consultant led service from Dr Luis Nacul (respected ME specialist) for moderate and severe ME patients living in Norfolk.

2. The lack of services available for moderate and severe ME patients in the Norfolk area.

I have recently discovered that all the Norfolk CCGs had an opportunity to commission care from Dr Luis Nacul (an internationally respected ME specialist) but they rejected this offer. Norfolk CCGs decided they would not pay for the new service with the consultant, and one CCG also said there was a “conflict of Interest” when Dr Nacul offered his services for a “cost neutral solution”. All Norfolk CCGs have consigned ME to a “minor community service” and it will not be allowed to be discussed in public nor are minutes released from their clinical exec.

What makes this decision even worse is that in his feasibility assessment Dr Nacul determined that service improvement was cost neutral. https://t.co/j2EGXPdb7Q

How can [Norwich] CCG justify making a decision that denies severely ill patients treatment that could dramatically improve their quality of life, and reduce their pain and suffering, especially if this treatment was at no extra cost to the service currently provided?

[As a severe ME sufferer who has lived in Norfolk for 35 years, I am deeply saddened and angered by this decision. I have felt abandoned over the years by the NHS due to lack of specialist care, lack of provisions for severely affected ME patients and inadequate knowledge and understanding about ME by medical professionals within the NHS; I have been left to cope with this devastating illness on my own. I am virtually bed bound and I suffer debilitating pain and exhaustion on a daily basis, yet I do not receive adequate or consistent care.]

For years we, ME patients, have been 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 taken up by Norfolk CCGs – can you please explain why? Also, why has ME been consigned to a “minor community service” – I can assure you, these services are not minor to the thousands who are affected by ME.

As you are aware, Dr Nacul leads the CureME Team at the London School of Hygiene and Tropical Medicine. The team is driving research for the recognition, diagnosis and treatment of ME and CFS.  Dr Nacul and his team are experienced, compassionate and committed to research into ME and CFS. The CureME team runs the ME/CFS Biobank which has included the collection of samples and clinical data from patients, including the severely affected, across Suffolk and Norfolk. We need Dr Nacul and his team’s expertise, our lives depend on it.

The current therapy led service provided by ECCH provides no support for the long term ME patient, or indeed the severe/housebound ME patient. This leaves large numbers of us, possibly several thousand, in the Norfolk and Suffolk area in a state of neglect. I want to know what steps are currently being taken to remedy this situation. It was also recognised by the JHSC back in 2009 that the therapy led service was inadequate and did not provide ME patients with the parity of care offered
to patients of other neurological conditions such as Multiple Sclerosis and Parkinson’s. When is this going to be remedied?

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 look forward to hearing from you.

Yours sincerely

[Name]

[Address]

[Email]

  • Once you have completed your complaint letter please send a copy to your local CCG using the contact details below.

NORFOLK CCGs CONTACT DETAILS:

Norwich CCG:

Chair: Tracy Williams

NHS South Norfolk Clinical Commissioning Group, Lakeside 400, Old Chapel Way, Broadland Business Park, Thorpe St Andrew, Norwich, NR7 0WG.

All Norfolk CCG complaints are dealt with at a central office, so the address is the same for all four.

Or email: https://www.norwichccg.nhs.uk/your-health/complaints-concerns

West Norfolk CCG:

Chair: Dr Paul Williams

NHS South Norfolk Clinical Commissioning Group, Lakeside 400, Old Chapel Way, Broadland Business Park, Thorpe St Andrew, Norwich, NR7 0WG.

Or email: http://www.westnorfolkccg.nhs.uk/contact-us/complaints

North Norfolk CCG:

Chair: Dr Anoop Dhesi

NHS South Norfolk Clinical Commissioning Group, Lakeside 400, Old Chapel Way, Broadland Business Park, Thorpe St Andrew, Norwich, NR7 0WG.

Or email: http://www.northnorfolkccg.nhs.uk/comments-compliments-and-complaints-0

South Norfolk CCG:

Chair: Dr Hilary Byrne

NHS South Norfolk Clinical Commissioning Group, Lakeside 400, Old Chapel Way, Broadland Business Park, Thorpe St Andrew, Norwich, NR7 0WG.

Or email: http://www.southnorfolkccg.nhs.uk/contact-us/compliments-comments-concerns-and-complaints

Great Yarmouth & Waverney CCG 

Email: http://www.greatyarmouthandwaveneyccg.nhs.uk/page.asp?fldArea=4&fldMenu=1&fldSubMenu=2&fldKey=449

    • Please copy in to Norfolk Scrutiny officers as well (email complaints)maureen.orr@norfolk.gov.uk   timothy.shaw@norfolk.gov.uk
  • You can also use Twitter to voice your complaint. I have been Tweeting my local CCG about this decision but I haven’t received a response yet. Please feel free to put pressure on them. I have been tweeting this:

“@NorwichCCG I’m a severe ME patient living in Norwich. I’m bed bound and suffer daily with debilitating pain and exhaustion. Can you please tell me why you declined the opportunity to commission care from Dr Luis Nacul that could have greatly improved my quality of living?”

“And can you please tell me why you have consigned ME to a “minor community service” and will not allow it to be discussed in public nor allow the minutes released from your clinical exec. @NorwichCCG #pwME #myalgice #ChronicIllness #MyalgicEncephalomyelitis #mecfs”

Don’t forget to to tag your local CCG:

@NorwichCCG @SouthNorfolkCCG @WestNorfolkCCG @NorthNorfolkCCG

CONSIDER CONTACTING YOUR LOCAL MP.

I have also written to my local MP, Chloe Smith (Norwich) and my local paper (Eastern Daily Press) If you feel able to, please consider doing the same.

THANK YOU.

We need to show Norfolk CCGs that this decision is not acceptable, and that the current services available for ME patients in Norfolk is inadequate. Thank you for reading this and I hope you can find the energy to get involved. I understand how exhausting activities like this are, but we need to make our voices heard. Thank you.

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