Does the ME/CFS Delivery Plan deliver?

Yesterday, the Government published its long-awaited ME/CFS Delivery Plan.

What Timing! As Tessa Munt, MP, who has been a real champion, said:

“I’m hugely relieved that DHSC is apparently publishing the Final Delivery Plan today. But it’s contemptuous that it is only being released as the long Summer Recess starts, depriving MPs of the opportunity for proper scrutiny.”

At least it’s now published. Our warm regards to the Civil Servants who were great to work with and worked their socks off. The ME community who attended, including physicians, academics and researchers, main charities and those with lived experience spoke strongly, usually as one voice and were clear in our demands. We submitted papers, presentations and bucketfuls of evidence and informed opinion. As #ThereforME says, there’s some positive steps in the right direction. 

But on a journey of a thousand miles, the first steps alone aren’t enough. Our hopes were raised by being well-listened to, by the clear vision we put forward, by the sheer strength of over 3,000 responses to the Interim Plan and the amazing and impassioned contributions from many in the Task and Finish group. However, what is now published is a pale reflection of where we could be, where we want to be and where we could be going together. Critically, the plan has no earmarked funding for delivery and although there is some good news on the research front, it is a far cry from what is needed and the possibility of catching up on lost time. The patient community are exceptionally disappointed that the service specification proposed only covers mild to moderate cases, and for those who are severe there is nothing tangible in the pipeline, just further exploration. With no new funding, and with long Covid clinics around the country being reduced or closed, we have no confidence that the services desperately needed will be there. 

How has the plan been received? 

Sean O’Neill, whose daughter Maeve died from ME says ‘it is a plan without any plan’. Maeve’s mother, Sarah Boothby, said on BBC Breakfast ‘there is nothing in the plan that is going to prevent more deaths’. Sonya Chowdhury, CEO of Action for ME, who was also on BBC Breakfast said ‘we need urgently to see actions implemented so that people are not left to suffer any longer’. BBC Breakfast with Sonya Chowdhury (Action for ME), Sarah Boothby, Dr Binita Kane

The Plan follows the same themes as the Interim Plan – this is briefly what it says:

Research:

The research community called for a virtual research hub and strategic funding which would build capacity. Instead, included in the plan is £1.4m NIHR HERITAGE study to look at the overlap between ME/CFS and long COVID, and explore costs and effectiveness of different existing healthcare models for both conditions. A further small amount is available to set up a platform to generate bids for repurposing pharmaceutical interventions across a wider range of post-acute infection syndromes.

Attitudes and Education

Acknowledgement and commitment to a public awareness programme are welcomed, as are further development of e-learning modules for health care practitioners and including ME/CFS in the medical student learning programme, but concerns about the quality of information in the modules are not addressed and the training will still not be mandatory. The student learning programme is to be implemented from 2029. Locally we will continue to work with the medical school to support learning. 

Living with ME/CFS

A model service specification for mild and moderate cases can be welcomed, but at this point there is no sense that local areas will fulfil this, or appoint staff with the necessary understanding. Our concerns are that patients will still not be able to access the clinical support that could help them. Through Forward ME, we argued strongly for specialist nurses, for a named health care professional in every clinical setting, for an on call service for the very severely affected whose lives are currently at risk in inappropriate hospital settings, and for a National Centre of Clinical Excellence. The Delivery Plan references general services to be provided locally as part of the NHS 10 year plan, but we feel they need staffing with at least one named person with the right knowledge. We proposed the use of virtual wards for the severely ill, but the plan only commits to an exploration to develop a service for the very severe, and fails to address the two recent Prevention of Future Deaths reports.

The Tymes Trust argued passionately that services for children and young people need to prevent deterioration  – the Plan is inadequate in addressing this. A more detailed summary by Action for ME can be found here: Summary and the ME Association response is here.

We were delighted to see our member Tracy Meggit had her story published in the Independent as part of the press coverage of ME/CFS. 

Going forward, the Task and Finish group will continue to meet to monitor progress, and a further Health Service Sub-group will further develop the ‘Living with ME/CFS’ strand.  The DHSC remain committed to including the voice of patients, carers and interested parties. As with the NICE guideline, the Royal Colleges are so far slow to come on board. We hope the Delivery Plan will at least be able to support us a little in changing the mindset of our local commissioners to committing the necessary funding for a clinically led service and moving away from out-dated thinking and assumptions about people living with ME/CFS. 

If any members would like to arrange an online meet-up to chat about this, please email the office and we’ll be happy to set it up.

Carolyn Leary

Member of the Task and Finish group

Trustee and Former Chair of Sheffield ME and Fibromyalgia group