A Delivery Plan that’s #ThereForME

Six things we'd like to see in the Delivery Plan for ME

In March this year the Department of Health and Social Care is due to publish the long-awaited cross-government delivery plan for ME/CFS. The process towards the plan began almost three years ago, initiated by Sajid Javid, and included a public consultation (the results of which were published last month).

We believe the delivery plan represents an opportunity to establish clear steps towards a long-overdue transformation in care and research, so that the NHS can truly be there for people with ME, including those who have developed the condition as part of Long Covid. The public consultation made clear just how badly the health system is failing people with ME, with inappropriate attitudes, “lack of compassion”, inaccessible care and poor implementation of NICE guidance.

We’ll be representing #ThereForME on the task and finish group, which will meet for the first time today, as part of a process towards finalising the plan. While the initial delivery plan process preceded our campaign, we’re delighted to now be in the loop.

Here are six things we’ll be looking out for as the delivery plan is finalised

1. Strong action on patient safety

First and foremost, we want a delivery plan that promises strong action on patient safety. Last September over 200 healthcare workers wrote to the Secretary of State for Health and Social Care, urging immediate action to ensure safe care for people with ME. We’re calling for the delivery plan to include a commitment to an audit of patient safety in NHS services for ME, covering aspects such as compliance with the 2021 NICE Guideline, accessibility of care and mechanisms to safely manage Severe ME. This is critical to evidence the current state of play for patient safety, providing a baseline for measuring progress.

In the meantime, clear steps are needed immediately to address the gaping holes in care for those most severely affected, starting with the development of national standards for the care of people with Severe ME, covering treatment of hospital in-patients and community care, as well as support for hydration and nutrition. These standards should be based on the NICE Guideline, expert opinion and the experiences of those affected.

2. Government as a catalyst to accelerate research

We echo the call for ring-fenced public funding for biomedical research, captured in the public consultation. A long-term funding boost is needed to reinvigorate research around ME, attract new researchers to the field and enable well-established researchers to expand their work. Our campaign is calling for £100 million of annual funding for biomedical research, putting the UK at the forefront of a global effort to accelerate treatments.

Crucially, however, the government isn’t the only player and the level of change needed won’t be delivered by public bodies alone. We’d like to see the delivery plan position the UK government as a catalyst, committing to work with patient advocates, philanthropy and industry partners to leverage additional research funding and build a coalition behind the acceleration of research and treatments. This is what people with ME need to manage their symptoms, improve their quality of life and ultimately rebuild their lives.

3. Doing more with the tools we already have

The delivery plan should acknowledge that, while transformative therapies will require research, more can be done with the tools already in our arsenal. Patient experiences make clear that the current NHS care model needs a reset.

We’d like to see the establishment of a clinical taskforce to create consensus guidelines for the treatment of ME, including use of off-label therapies and repurposed drugs. This needn’t reinvent the wheel: it could build on work already done in the US. This could provide the basis for strengthened care in the immediate term, while working towards the longer-term training and development of specialist clinicians to provide holistic care. Ultimately, we’d like to see these clinicians working as part of a new specialty structure for ME and other infection-associated chronic conditions (IACCs).

We’d also like to see a delivery plan that positions NHS care for ME at the forefront of technological innovation, supporting the uptake of tech-enabled solutions for remote investigation and monitoring of people with ME (particularly those who are housebound), as well as their participation in research and clinical trials. This could include, for example, at-home blood pressure monitoring, 24-hr ECG, sleep studies and heart rate variability tracking. Visible is an example of how such approaches are already thriving in the private sector but have not yet been taken up within the NHS.

4. Bolster care in the community

More widely, the plan must also address what can be done to strengthen care in the community. In our 2024 #ThereForME survey, only 4% of people with ME and Long Covid (and their carers) said they felt supported by the NHS to manage their symptoms at home.

This is particularly critical for those most severely affected. Why force people with Severe ME into a hospital setting when key elements of care can be provided safely at home? We’d like to see Severe ME included in the criteria for NHS Continuing Healthcare (CHC) funding, alongside a clear plan of action to strengthen community care. What can we learn from other models – such as Macmillan nursing – to fill the current void in community care?

5. Institutional ownership and resources

In order to achieve the transformative change needed in the NHS and across government, the delivery plan needs to be backed by institutional ownership and resources. We believe the plan should include a commitment to establishing a Centre of Excellence for care and research, including development of a National Registry. A Centre of Excellence could provide much-needed leadership and clinical expertise, while acting as a focal point for research, clinical trials and the development of treatments.

A centre of excellence could go beyond ME to take a wider focus on IACCs, including those under the complex umbrella of Long Covid. The Cohen Center for Recovery from Complex Chronic Illness at Mount Sinai provides a model for this approach. Progress on care for ME, alongside other IACCs, needs to be framed as a key step for pandemic preparedness, strengthening the UK’s ability to respond to the long-term health impacts of future pandemics.

While some shifts can be achieved through changes to practice alone, transformative change will require sufficient resourcing. For instance, the public consultation made clear the urgent need for the education of healthcare workers, many of whom have received little to no training on ME. Resources should be allocated to ensure that any training modules are carefully developed, high quality and informed by patient voices.

6. Clear targets and accountability

Finally, we’d like to see a delivery plan with clear and ambitious targets. Can this government commit to ensuring 100% compliance with the 2021 NICE Guideline across NHS Trusts and Integrated Care Boards by 2028? Zero deaths among people with Severe ME from dehydration or malnutrition? We want to see a plan that demonstrates an ambitious vision for the level of transformation required.

It’s also critical that the delivery plan outlines clear mechanisms to demonstrate how progress in implementation will be led, managed and measured. Who will be involved? What will accountability look like? How will scrutiny of progress be facilitated – for example, from parliamentarians and patient advocates?

We want to hear from you

As we start our engagement with the delivery plan process, these are some of the priorities we’ll be bringing forward. But #ThereForME has always been a campaign built for and with the community – so we want to hear from you as we develop our thinking. Does this resonate? What are we missing? What would you most like to see in the plan?

You can let us know in the comments or through our suggestion box.

Let’s build a delivery plan that’s #ThereForME.