MEAction UK are members of the Task and Finish group and have campaigned throughout the development of the Final Delivery Plan to make sure the voices of people with ME were heard. We are very disappointed by the content of the Plan. Minimal sums of money have been committed to ME research. £1.4 million and a competitive award do not replace the millions of pounds missing from ME research and care. Even this minimal progress has only happened due to the relentless pressure from us all. It is not nearly enough and the Plan is disappointing in so many other areas, outlined below.
Before responding in detail we would like to take a moment to acknowledge all the hard work that has been needed to get us here. Hard work by people too ill to do it, hard work by carers who have their hands full, hard work by allies who didn’t close their eyes to a medical scandal.
This is just the start. There is more work to be done, more people to persuade, more battles to fight. Join us as we build on this plan to make ME care and research fit for the amazing people who have campaigned relentlessly for many years and for the people who need it most.
Research
We welcome the £1.4 million for the HERITAGE study but are concerned that this is the only funded programme for ME. The New NIHR Application Development Award, focused on evaluating repurposed pharmaceutical interventions, is competitive and not solely for ME. We understand that the PRIME award of £845,000 was part of a different process and should not be included in the FDP.
We campaigned for a ring-fenced, multi-year biomedical budget reflecting prevalence and severity. The FDP states that ring-fencing is “not usual practice” and keeps the competitive model. New spending is limited to an Application Development Award and a one-off “research showcase”. There is still no dedicated fund or spending target for research. The competitive model has failed for 30 years and the FDP offers no solution if the model continues to fail
The Researcher Toolkit, round-tables and events are positive, but we reiterate that there is an urgent need to fund a ME/CFS Centre of Research Excellence. Without it, capacity will stay “very small”
Attitudes & Education
NHS England (NHSE)and the NHS Health at Work Network promise to update their webpages on ME/CFS by the end of March 2024. Although NHS England has updated their website the NHS Health at Work Network has not, and still quotes outdated advice on Graded Exercise Therapy and uses the outdated term CFS/ME. The updated NHSE website’s update is unsatisfactory, referring to “extreme tiredness” as the main symptom of ME/CFS. These webpages are not in line with the NICE guideline on ME/CFS and should be urgently updated.
There are now e-learning modules available but we are concerned that training remains voluntary. There is no linkage to CPD, appraisal or revalidation. Module 3 on Severe ME is restricted to .NHS/.GOV/.AC.UK accounts which excludes agency, community and social care staff who often deliver front-line care to the severe and very severely affected.
Living with ME/CFS
Health services
There has been progress here with a stock-take of services with template service specification for mild/moderate ME. Exploration of a specialised service for very severe ME is mentioned in the FDP. However, neither the template service specification nor the “exploration” of a specialised service has a delivery date or budget.
ME patients who are severe/very-severe were largely ignored in the Interim Delivery Plan pathway. In the FDP, only the language has changed with acknowledgment of "patient safety concerns, and even tragically avoidable deaths of people with ME/CFS" and "These must become never events”. We are deeply disappointed that there is no firm improvement in the FDP. The FDP states that, ‘DHSC, with NHS England, will explore whether a specialised service should be prescribed by the Secretary of State for Health for very severe ME/CFS.’ As NHS England has been abolished, who will take their role here? There is urgency to avoid more deaths from malnutrition and there is no immediate interim solution (e.g. hospital outreach or rapid-response teams) offered. The setting up of this service is in the power of the Secretary of State for Health and Social Care, Wes Streeting and we are deeply concerned that he has not responded to any of the calls to do this.
Children & young people
The Final Delivery Plan promises that the Department for Education (DfE) ‘will embed ME/CFS-specific considerations into its broader approach to education’, including by sharing relevant training, resources and guidance with alternative provision settings and local authorities. In addition, DfE will explore opportunities to raise awareness and promote understanding of ME/CFS across the education sector. This includes engaging with stakeholders, disseminating best practice, and ensuring that guidance and communications reflect the needs of children with complex medical conditions’.
We welcome the statement, but the DfE updated guidance Arranging education for children who cannot attend school because of health needs and A Guide for Local Authorities and Schools do not help children with ME who cannot attend school and need remote education. The guidance in Providing remote education: guidance for schools - GOV.UK treats remote learning as a ‘last resort’ and instructs that ‘Pupils absent from school and receiving remote education still need to be marked as absent in the register.’ This can give rise to unjustified safeguarding referrals. There is no firm action to stop inappropriate safeguarding referrals as the welcomed Law Commission review lacks a timeline.
Adult social care
The Final Delivery Plan does not include any measures to reduce turnover of care staff or ensure continuity - a core point in our response to the Interim Delivery Plan. It is also worth noting that person-centred care for a person with ME may mean setting up multiple short visits rather than one longer visit; eg if having a shower uses all their energy then they might not be able to tolerate any further care on that day, and would need the carer to return on another day to complete other care activities.
Many people with ME depend on others to care for them. Family members struggle to provide care while also holding down a job; many have to give up work to care for their family member. Pointing them to information is not enough, an automatic carers assessment should be offered at diagnosis.
In conclusion, MEAction UK thanks the Department of Health and Social Care (DHSC) staff for their work, Ashley Dalton MP for publishing the plan and her introduction acknowledging that many people with ME have felt let down by the system. However, our overall opinion is that the Final Delivery Plan (FDP) still lacks the urgency, ambition and resources required to address the escalating ME public‑health crisis. A plan without money, mandates or deadlines is not a plan - it is a wish‑list.