Building an NHS that’s there for people with Long Covid and ME

#ThereForME is a patient- and carer-led campaign calling for an NHS that’s there for people with ME and Long Covid. The new Labour Government has come into office with a powerful promise: to transform a broken healthcare system, building an NHS that is fit for the future.

To achieve this, the NHS must deliver for people suffering with Long Covid and ME. We have published a new policy brief, drawing on data from over 300 people with Long Covid/ME and endorsed by 15 organisations including the ME Association.

We’re calling for a transformation in care for people with Long Covid and ME: an NHS that’s there for them when they need it, offering safe care and access to the best that modern science can offer. 

We are calling on the new government to:

1. Commit to an NHS that is there for people with ME and Long Covid and put this into action by prioritising publication of the cross-government delivery plan on ME/CFS. 
2. Pledge at least £100m annual funding for biomedical research – utilising the UK’s science and technology expertise to advance treatments.
3. Commit to doing more with the tools we already have e.g. implementing the 2021 NICE Guidelines for ME/CFS.

How to support the campaign

You can support #ThereForME by:

1. Signing the open letter by 02 August (open to all ME/LC patients and carers in the UK).
2. Sharing the policy brief and #ThereForME campaign on social media.
3. Writing to your MP to share the policy brief and recommendations.
4. Subscribing to the #ThereForME substack to stay updated on the campaign.

Building an NHS that's there for Long Covid and ME

Executive Summary

Extracts

There are three Labour commitments that could have the biggest impact, where people with Long Covid and ME highlight current shortcomings:

1. An NHS that is there when people need it:

• Two thirds told us that the NHS has not been there for them when they needed it. Many have felt dismissed and/or disbelieved. Some have deteriorated during or following NHS care, highlighting failures in terms of patient safety.
• Over 7 in 10 told us they had looked outside the NHS for support. Many who can afford it, and even some who are struggling financially, are turning to private healthcare to access basic care, emerging treatments and knowledgeable clinicians.
• Not a single respondent who was very severely affected felt that the NHS had been there for them. There are no specialist inpatient services for Severe ME in the UK and no NHS Protocol to guide hospital care for life-threatening complications.

2. Change so that more people get care at home in their community:

• Many have struggled to access care in the community. Only a small minority (4%) told us that they felt supported by the NHS to manage their symptoms at home.
• Much more could be done to provide appropriate support in primary care. Many answering our survey spoke about limited knowledge of ME and Long Covid among clinicians and felt they had been left without long-term monitoring or support.
• Ensure that emerging research filters down into clinical practice in the NHS. For example, by committing to update the 2021 NICE Guidelines for Long Covid based on new research.

3. Do more with the tools we already have:

• Commit to and take accountability for implementing the 2021 NICE Guidelines for ME/CFS. The guidelines should be applied to all patients with an ME/CFS diagnosis (including those with Long Covid).
• Support access to emerging treatments within the NHS, including as part of clinical trials.
• Leverage technology-enabled solutions in the NHS to better support patients to manage their symptoms at home e.g. using wearables for remote monitoring and symptom management.
• Mobilise tools to measure and reduce the ongoing health burden of Long Covid in the UK. For example, by supporting the wider roll-out of air filtration systems within key public services (e.g. healthcare settings and schools).