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North Cumbria Persistent Physical Symptoms (and ME/CFS) Service Update

On July 4th 2022, we wrote to the North Cumbria Integrated Care NHS Foundation Trust to express a number of concerns about how their Persistent Physical Symptoms (PPSS) referral service was implementing the recommendations in the new NICE guideline on ME/CFS.

In particular:

  • having a specialist team that is able to confirm that a GP diagnosis of ME/CFS is correct
  • being able to provide the full range of medical and drug management that is recommended in the new NICE guideline,
  • having the expertise to carry out the assessment and management of people who are housebound with severe or very severe ME/CFS
  • diagnosing and managing children and young people with ME/CFS

A copy of the initial correspondence can be found here:

We have now received a reply from Lyn Simpson, CEO of North Cumbria Integrated Care NHS Foundation Trust:

This letter contains the following information:

EXTRACT

“Dear Dr Shepherd

ME/CFS referral service in North Cumbria

“Further to your open letter which has been published on your website for the attention of the CEO of North Cumbria Integrated NHS Care NHS Foundation Trust, we write to offer detailed information on our service.

“My colleagues are very keen to meet with you and have the opportunity to assure you of the high quality service that we are delivering.

“I am sure you are aware that the Trust is not commissioned to diagnose or deliver the medical management of ME and CFS as this sits with primary care and with the region’s specialist team in the Royal Victoria Infirmary (RVI) in Newcastle upon Tyne, however, we do see patients that have been diagnosed with CFS or ME and accept referrals for patients who are under the care of medical colleagues. We do not decline referrals of patients who are in the care of other pathways and work in parallel with other medical teams to provide an integrated service to meet the whole needs of the patient.

“The service, which was commissioned by the CCG did not include the provision of a domiciliary service to patients with ME or CFS, and whilst we are unable to provide ongoing home-based treatment, we do offer a domiciliary assessment if appropriate…”

Lyn Simpson, CEO of North Cumbria Integrated Care NHS Foundation Trust

We also received a document explaining how the Persistent Physical Symptoms Service in North Cumbria is delivered and aligned to the recommendations in the new NICE guideline:

Before meeting with representatives from the North Cumbria PPSS it would be helpful to gather some further feedback from anyone in North Cumbria who is either in the process of seeking a referral or has been referred to the PPSS.

It would also be helpful to hear from anyone in North Cumbria who has then been referred to the ME/CFS service in Newcastle, is housebound with severe ME/CFS, or is the parent of a child or young person with ME/CFS.

Referrals to the Newcastle ME/CFS Service are of particular interest because of the long journey that would be involved for a face-to-face assessment and the fact that this is the service that reported on the very high rate (ie 40%) of misdiagnosis of ME/CFS that occurs in primary care (please click the button below to read the research paper from Professor Julia Newton, published in 2010:

“ Of the 40% of patients subsequently found not to have CFS the most common diagnosis was fatigue associated with a chronic disease (47% of all alternative diagnoses); 20% had primary sleep disorders, 15% psychological/psychiatric illnesses and 4% a cardiovascular disorder. Thirteen percent remained unexplained (5.2% of the total referrals). “

The Newcastle ME/CFS Service: Not all Fatigue is the same (2010)

It is not clear at this point whether anyone with ME/CFS, or a carer/parent, or a local ME/CFS group representative, who are based in North Cumbria might be invited to this meeting as well.

You can either place comments on MEA Facebook post – where this matter is being discussed – or send your comments directly to the MEA at: feedback@meassociation.org.uk

Dr Charles Shepherd
Trustee and Honorary Medical Adviser
(Member of The NICE Guideline Committee on ME/CFS (2019 – 2021) and The DHSC Research Working Group (2022-23)


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