Back in September 2022, the ME Association wrote to Northamptonshire NHS Integrated Care Board with a number of questions regarding the management of people with ME/CFS and the education of health professionals (see link below)
Four months later we have received a very disappointing reply.
MEA writes to Toby Sanders, Chief Executive – Northamptonshire Integrated Care Board about implementation of the new NICE guideline on ME/CFS
Reply from Northamptonshire NHS Integrated Care Board
“Please accept our sincere apologies for the significant delay in responding to your enquiry detailed below. Please be advised that Northamptonshire ICB have been waiting for information from both the Coventry and Warwickshire ICB, and University Hospitals Coventry and Warwickshire, which has caused the delay.
Please find below the response from the Planned Care team at Northamptonshire ICB –
(a) What action is being taken to update your information for health professionals on ME/CFS
Currently, there are no plans to update our health professionals, but this is something that I will pick up with our Educational lead at the ICS. When utilising training afternoons in primary care we have to be conscious of the topics that are discussed to ensure that firstly this is something that the clinicians want to discuss and secondly that it aligns with system priorities.
(b) What plans you have for setting up a specialist referral service for people with ME/CFS in Northamptonshire
Currently, due to severe system pressures and financial challenges, there are no plans to set up a de novo ME/CFS service for patients in Northants. Our priorities from an elective care perspective are to clear backlogs of patients who have been waiting a substantial time for treatments, as well as ensuring our cancer patients are treated according to cancer waiting times guidance.
(c) What arrangements are in place with specialist referral centres outside Northamptonshire where people with ME/CFS can be referred by their GP
NHS Northamptonshire ICB currently contracts with:
Bedfordshire Hospitals – Chronic Fatigue Clinic
Buckinghamshire Healthcare – Chronic Pain and Fatigue Management Service
Cambridgeshire and Peterborough FT – CFS/ME Service
Oxford University Hospitals – Chronic Fatigue (CFS/ME) Service
University Hospitals College London – Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FMS) Service
Noting current pressures on NHS capacity the ability of these services to accept referrals from out-of-county commissioners may be limited.”
MEA Comment
This is not good news in relation to setting up a proper ME/CFS specialist referral service in Northamptonshire – where a GP diagnosis can be confirmed and a multidisciplinary approach to management arranged.
So people with ME/CFS in Northamptonshire will continue to have to be referred to other services outside the area for specialist help with diagnosis and/or management.
The MEA does not regard this situation as satisfactory.
In regard to medical education, all GP surgeries in Northamptonshire will have received the MEA information pack containing our guides to the new NICE guideline, Early and Accurate Diagnosis of ME/CFS and Long Covid.
Whilst we are happy to help with medical education on ME/CFS, this is not something that can just be left to the charity sector.
There is also a limit to the amount of time that we can devote to corresponding with numerous individual service providers around the UK on the subject of NICE guideline implementation.
So if people with ME/CFS in Northamptonshire feel strongly about the need to provide a proper local ME/CFS referral service they do need to contact their MPs and the local media to raise their concerns.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.
