MEA letter to Northamptonshire care trust about NICE guideline

MEA writes to Toby Sanders, Chief Executive – Northamptonshire Integrated Care Board about implementation of the new NICE guideline on ME/CFS

Dear Toby Sanders

Re: Implementation of the new (October 2021) NICE guideline on ME/CFS

The ME Association has been receiving a number of communications from our members who have tried and failed to obtain a GP referral to a specialist team/service in Northamptonshire for either diagnosis or management of their ME/CFS. 

I have not been able to locate any information on a specialist ME/CFS referral service in Northamptonshire – so I assume that this does not exist.
The only information that I can find is this Prior Approval guidance (PA13) from the Northamptonshire CCG – which was published in April 2019 and is due to be updated in April 2024:

Unfortunately, this information is now out of date and is not consistent with the recommendations in the new NICE guideline.

Key recommendations in the new NICE guideline on ME/CFS relating to primary care and the hand over to secondary care include:
1  The early recognition of people with ME/CFS symptoms (which often follow an acute infection) in primary care 
2  Providing appropriate management advice in primary care whilst a diagnosis is being suspected and made
3  Aiming to confirm a diagnosis of ME/CFS in primary care no later than three months from the onset of symptoms in both adults and children
4  At this point referring the person on to a specialist centre where there is a multidisciplinary team that can confirm the diagnosis (as there is a high rate of misdiagnosis of ME/CFS in primary care), provide expert help on all aspects of management, and prepare an individual care and support plan
The NICE guideline (in 1.4 Diagnosis – Box 3,) provides specific guidance on the composition of the multidisciplinary specialist team:

Specialist teams consist of a range of healthcare professionals with training and experience in assessing, diagnosing, treating and managing ME/CFS. They commonly have medically trained clinicians from a variety of specialisms (including rheumatology, rehabilitation medicine, endocrinology, infectious diseases, neurology, immunology, general practice and paediatrics) as well as access to other healthcare professionals specialising in ME/CFS. These may include physiotherapists, exercise physiologists, occupational therapists, dieticians, and clinical or counselling psychologists. 

Children and young people are likely to be cared for under local or regional paediatric teams that have experience of working with children and young people with ME/CFS in collaboration with ME/CFS specialist centres.
5  The specialist team should also provide management for people who are housebound with severe or very severe ME/CFS and are unable to attend an out patient clinic
6  There should be a separate service for children and young people with ME/CFS
7  Specialist services should also provide information and guidance on relapses, education, employment and nutrition
8  Following referral to a specialist team, future management and follow up may continue in secondary care, primary care, or in a mixture of both
9  All health professionals who are involved in the management of people with ME/CFS should be properly trained and be aware of the recommendations in the new NICE guideline.

I would therefore be grateful if you could let me know:
(a) what action is being taken to update your information for health professionals on ME/CFS 
(b) what plans you have for setting up a specialist referral service for people with ME/CFS in Northamptonshire
(c) what arrangements are in place with specialist referral centres outside Northamptonshire where people with ME/CFS can be referred by their GP

As this matter is of great interest to our members in Northamptonshire, this letter will be published on the MEA website:

We will also publish your response

Kind regards

Dr Charles Shepherd
Hon Medical AdviserMember of the NICE guideline on ME/CFS committee 2019 – 2021

Dr Nina Muirhead – Co-Chair, DHSC Group on ME/CFS Medical Education and Training
Carol Monaghan MP – Chair, APPG on ME
Dr Peter Barry – Chair, NICE guideline committee on ME/CFS
Baroness Ilora Finlay – NICE guideline committee on ME/CFS

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