The Department of Health & Social Care (DHSC) has published the Final Delivery Plan on ME/CFS.
The Plan’s release is an important step towards recognising the scale and seriousness of the condition and we welcome the Plan and the intent behind it.
We would like to thank everyone who has worked hard to produce the Plan and recognise the commitment that many have shown to its publication, including members of the ME community who used their time and energy to input into the wider consultation.
Whilst there are elements of the Plan that will have a positive impact, it simply does not go far enough to ensure that its desired outcomes will be achieved. In particular, the Plan lacks a strategic approach to research investment, ambition, and accountability structures.
We will continue to call on the DHSC and engage through the Task & Finish Group to ensure that further improvements to the Plan are made and that it is implemented in full. We remain committed to ensuring that the Final Delivery Plan on ME/CFS achieves its aims of driving change and improving care and support for people with ME/CFS.
We have set out a more detailed response, below.
The Plan does make some attempt to address the systemic issues that exist in securing ME research funding through the NIHR (National Institute for Health and Care Research) and MRC (Medical Research Council); the joint research showcase event for post-acute infectious diseases being a good example of this.
However, events such as this are unlikely to reverse the long history of underfunding of ME research compared to other conditions. Areas such as dementia, mental health, and rare diseases benefit from dedicated platforms with sustained, multi-million-pound funding.
It is also important to note that the MRC Partnership Grant still requires researchers to apply competitively, often against non-ME proposals. This presents additional challenges including the risk of bias in peer review against ME research, an issue referred to in the plan that will not be solved by the actions outlined in this section of the Plan.
We welcome the NIHR’s commitment to ensuring that keeping PPI at the centre of ME research – this is indeed a positive step.
The Plan attempts to address the lack of research funding through the PRIME project. Whilst we hope this project will achieve its aims of building research capacity for ME in the UK and is funded by the MRC, this funding was secured through an existing, competitive funding process and should not be included as an action within the Final Delivery Plan.
We do, however, welcome the announcement of the £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 and look forward to receiving further details regarding the study.
A strategic approach is urgently needed to accelerate research to better understand the underpinning causes of ME, identify biomarkers and identify treatments. Without the ‘basic science’ and the identification of phenotypes, or subsets of ME, we remain concerned that drug trials will fail.
We are particularly disappointed to see that our calls for strategic research funding and the setting up of an ME research hub have been ignored within the final Plan.
A similar approach has shown to be effective in other illness areas and can help bridge research silos, accelerate drug treatments, connect academic research with industry and clinical care, whilst performing new research, and sharing data. It is a cost-effective way to leverage our world-leading life sciences sector to unlock treatments and ultimately cures for ME.
Without a commitment to better coordinate research, people with ME will continue to be neglected, overlooked and, for many, confined to their homes. The ME community and scientists have been calling for research to be accelerated through a strategic approach for years and we are still not seeing a strategic approach to address this historic shortfall.
Once again, it feels like people with ME have been ignored.
We are pleased to see the launch of a new funding opportunity for an application development award focussed on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes and associated conditions, including ME/CFS.
The NIHR’s Innovation Observatory horizon scan is a positive step and we are pleased to see that this action was completed and published in January this year.
We are pleased to see that the DHSC has committed to monitor ME research funding and provide annual updates to the Task & Finish Group. It is now essential that any research-related actions are met and that swift action is taken by the DHSC to address any issues.
We look forward to hearing more about how the Task and Finish Group will be convened; our Chief Executive has played an active role of the Group since its inception.
There is a clear commitment in the Plan to try and improve the attitudes and education of healthcare professionals and a number of positives can be taken from this section.
The public awareness campaign, to be led by the DHSC, could prove an effective way to improve understanding and awareness of ME. We hope to receive further details regarding how stakeholders will be engaged in this campaign to ensure it is as effective as it can be.
Members of ForwardME and the Task & Finish Group all highlighted the need for all e-learning modules and education to be mandated. This has been noted within the Plan but is disappointing to see that this has not been addressed.
We are, however, pleased to see the commitments regarding a further two NHS England e-learning modules, focusing on primary care, and severe ME.
Whilst there is a willingness to improve communications regarding the modules, there are no guarantees that healthcare professionals will engage with the materials. Healthcare professionals must engage with the materials to drive the fundamental shift in attitudes and education needed to improve care and support for people with ME.
The Plan also fails to address concerns regarding the accuracy of these modules and how they will be kept up to date with any research advancements. This creates a risk that even healthcare professionals who do engage with the modules are educated on out-dated information.
We are also disappointed and concerned to see the action relating to the updating of the NHS England and NHS Health at Work websites being updated in-line with the NICE Guideline being listed as "complete". A review of the NHS England page on ME/CFS still falls short of the Guideline, listing “extreme tiredness” as the first main symptom and CBT as a treatment option.
Ensuring the accuracy of these pages are essential and risk reversing any other DHSC efforts to reduce stigma and improve understanding.
We are encouraged to see the General Medical Council’s (GMC) willingness to include ME/CFS within its Medical Licensing Assessment and review its teaching on the illness. However, the proposed timeline for this indicates changes will be implemented from “2029” onwards. This rate of change is far too slow and will result a further four years of delay to vital training and education.
The coroner’s Prevention of Future Deaths report, issued following the tragic death of Maeve Boothby O’Neill, clearly outlined the risks associated with failing to appropriately educate healthcare professionals on ME. The Final Delivery Plan does not adequately address the coroner’s concerns, placing people with ME at extreme risk of harm, particularly those with severe and very severe ME.
It is encouraging to see that the Law Commission has committed to review its existing social care legislation relating to disabled children. However, many children and young people with ME are denied this very status, removing any positive impact this action could carry.
We welcome the DHSC’s commitment to promoting relevant training and resources on ME to improve understanding and awareness of ME, particularly with the Department for Education (DfE). However, the Plan states that “there have been no changes to the legislation or core policy on alternative provision.” and therefore fails to assure us that genuine improvements will be made to ensure children and young people with ME are appropriate supported throughout their education.
As with previous points outlined within the ‘Attitudes and education’ section, the Plan again fails to assure us that the training and education provided and encouraged is accurate, will be kept up to date, and will be enforced to ensure all education professionals have a stronger understanding of the impact of ME. Without this, children and young people, and their families, remain at serious risk of accusations of Fabricated and Induced Illness (FII), and a worsening of health and education outcomes.
The DHSC’s commitment to developing a template service specification for mild/moderate ME must be recognised as a positive step, particularly as it is being recognised separately to severe and very severe ME. This is enhanced by the planned engagement of the Task & Finish group as part of the review process.
It is, however, essential that Integrated Care Boards (ICB’s) are held accountable for ensuring these service specifications, and that the NICE Guideline are being strictly followed.
We are also pleased to see that conversations have begun as to whether a specialised service should be prescribed by the Secretary of State for Health for very severe ME and that NHS England would engage stakeholders in the process. This engagement will be essential in recognising the significant risks involved for patients, should an appropriate service not be achieved.
However, the Plan notes that this action is subject to a “ministerial decision and subject to funding” and fails to provide any alternatives should the service not be prescribed, risking leaving those most severely affected behind once more.
Furthermore, the Plan also fails to address previously raised concerns regarding the lack of action and transparency from ICBs and Trusts in sufficiently implementing the NICE Guideline. Without this, we know that many fail to ensure an appropriate provision of care and cause significant harm to patients, particularly the most severe. This has to change.
Both the NHS 10-Year Plan and National Neighbourhood Health Implementation Plan (NNHIP) launches are referenced within the Plan. Whilst both are highly relevant and both stand to improve care and support for some, neither provide any detailed information on how they will create meaningful change for people with ME.
These concerns, alongside ForwardME’s suggestion of establishing a Centre for Clinical Excellence, had been previously raised, and it is therefore disappointing to see that they have not been addressed within the Final Delivery Plan.
The Plan’s reference to ensuring carers are included within future ME policymaking is good to see and we look forward to receiving further details regarding how this will work in practice. We are also pleased to see recognition given in the Plan to the importance of unpaid carers in care decision.
Ensuring the provision appropriate training and education on ME is essential if health and social care workers are to be equipped with the skills and resources to hold positive working relationships with carers is vitally important.
Whilst aspects of this section are clearly well-intended, it fails to recognise the fundamental issue in that current systems are not working effectively and prevent access to appropriate support and/or redress for poor care.
As we have previously provided statements and updates on these sections, we have not done so again here.
If you would like to read more on how we have been actively challenging the Government on the recent welfare reforms, please visit the News section of our website.
We will also continue to share updates on this work moving forwards.
