**Trigger Warning: Upsetting content**
Towards the end of 2024 NHS England carried out a stocktake of specialist referral services for people with ME/CFS and Long Covid in England.
The stocktake was partly in response to the Coroner's Section 28 Prevention of Future Deaths Report following the Inquest into the death of Maeve Boothby O'Neill:
The NHS England stocktaking report has been referred to at DHSC Delivery Plan meetings but has never been published.
Dr Charles Shepherd, MEA Hon Medical Advisor, has also written to Amanda Pritchard, the previous Chief Executive at NHS England, about non publication of the report.
The MEA believes that this report should be placed in the public domain and as a result of a Freedom of Information request we have now received a redacted copy – which is available here:
Below is an edited version our most recent correspondence with NHS England.
This summarises our disappointment with both the very unsatisfactory response rate from the Integrated Care Boards and the information that those who did reply provided.
Edited version of the most recent correspondence from Dr Charles Shepherd to NHS England:
As I stated during the last DHSC Delivery Plan meeting with the DHSC Minister, the ME Association (MEA) is very disappointed by the unsatisfactory response rate from the Integrated Care Boards (ICBs) and the lack of information from those that did respond as to whether (1) a new ME/CFS specialist referral service would be set up where none currently exists and (2) an existing ME/CFS referral service is complying with NICE guideline recommendations regarding:
- the multidisciplinary skill set that should be in place
- the inclusion of a physician in order to provide a diagnostic service
- the ability to provide a comprehensive symptom management service which includes, where appropriate, prescribing of medication
- provision of a domiciliary service for people with severe and very severe ME/CDFS who are housebound and unable to attend an out patient service
- provision for children and adolescents
Given the numbers of people who are estimated to have ME/CFS – the most recent published estimate from Chris Ponting and Gemma Samms being around 400,000 – and with an additional new cohort of people with post Covid ME/CFS, we cannot understand why so many ICBs failed to respond
This is especially concerning when NHS England has stated that:
It was agreed that Long Covid and ME/CFS services are ICB commissioned services and ICBs have responsibility for ensuring coverage for their population.
As this seems to indicate that NHS England is not going to be more proactive when it comes to an ICB that is failing to providing any ME/CFS referral service at all, or is providing a referral service that is non compliant with NICE guideline recommendations.
To go back to some key points in the Services Review:
- The results described an uncertain future for many Long Covid and ME/CFS services across regions with significant challenges around funding, continuity etc
- The stocktake has not been able to demonstrate an ‘in depth accurate overview' as commissioned
- There is no national data dataset or collection for ME/CFS services
- There is variable and inadequate oversight of Long Covid and ME/CFS services
- There is no current national commissioning guidance or service delivery models in existence for ME/CFS services
Not surprisingly, the ME Association believes that this is a completely unacceptable situation, especially now that Long Covid referral services are being closed and many Long Covid patients are being transferred to ME/CFS services that already have very long waiting lists.
To conclude, and again quoting from the services report, NHS England is being recommended to: engage and align with the DHSC ME/CFS Delivery plan to work collaboratively to produce a plan that is aligned to NHS England's operational framework and meets the needs of people living with ME/CFS
A proper plan of action is desperately needed to ensure that people with ME/CFS receive an early and accurate diagnosis followed by an appropriate care and management plan based on the very clear recommendations in the NICE guideline on ME/CFS – all of which can be used to form the framework for clinical care pathways.
We look forward to learning what the DHSC and NHS England plan will actually involve and are very happy to help in whatever way we can
Regards
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
More Information:
- The Times: Coroner demands urgent action to prevent further deaths from ME | 08 October, 2024
- The Department of Health and Social Care (DHSC) publishes the outcome of the consultation process for the DHSC Delivery Plan on ME/CFS | 20 December, 2024
- Department of Health and Social Care have issued an update on the delivery plan | 31 March, 2025