MEA requests a meeting with North Cumbria Integrated Care NHS Foundation Trust to discuss their referral service for people with ME/CFS

MEA requests meeting with North Cumbria NHS Trust to discuss their ME/CFS referral service

Dr Shepherd has written to the North Cumbrian NHS trust to raise concerns about their referral service following on from a report on BBC Look North. The letter is reproduced below along with a video clip of the BBC item.

Dear Lyn Simpson – CEO North Cumbria Integrated Care NHS Foundation Trust

ME/CFS referral service in North Cumbria

Following on from yesterday's BBC Politics North investigation into clinical referral services for people with ME/CFS in North West England, and their discovery of the very high drop out rates by people who do attend these services, I have now had an opportunity to look at some of the information for the Persistent Physical Symptoms Service (PPSS) in North Cumbria

This is clearly a ‘rehabilitation’ service involving psychology, well-being and physiotherapy for a wide range of conditions that are causing symptoms that last for six months or more.

Of major concern in relation to ME/CFS is the fact that the PPSS:

  • does NOT provide a diagnostic service (for a condition where there are significant rates of misdiagnosis and late diagnosis in primary care)
  • does NOT provide medical advice, referral or treatment 
  • does NOT prescribe or change medications

This is not the type of specialist referral team or service that is wanted or required by people with ME/CFS.

Neither does it contain the type of specialist team that is recommended in the new (October 2021) NICE guideline on ME/CFS.

The service does not comply with the very specific timeline for specialist referral as recommended in the new NICE guideline (ie at three months following onset of symptoms).

The service does not deal with people with severe and very severe ME/CFS who require home-based assessment and management.

It does not provide and co-ordinate the sort of comprehensive individual care and management/treatment programme that is recommended by the new NICE guideline.
There appears to be no service at all for children and young people with ME/CFS.

This is a serious failure in the duty of care for adults, children and young people with ME/CFS who live in North Cumbria.

The ME Association is therefore requesting a meeting to discuss the need for a specialist referral service for people with ME/CFS in North Cumbria that is consistent with recommendations in the new NICE guideline

Yours sincerely

Dr Charles ShepherdHon Medical Adviser, ME AssociationMember NICE guideline on ME/CFS committee from 2019 – 2022

Dr Nina Muirhead – Co-Chair, DHSC Group on ME/CFS Medical Education and Training
Rt Hon Sajid Javid MP – Secretary of State for Health and Social Security
Carol Monaghan MP – Chair, APPG on ME
Baroness Ilora Finlay – Co-Chair NICE guideline committee on ME/CFS
Anna Gregorowski – BACME

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