ME Association Statement: Improving healthcare for people with ME/CFS and Long Covid

The ME Association is committed to working with the NHS and social care providers to improve healthcare for people with ME/CFS and Long Covid. We believe that everyone, regardless of where they live in the UK should have equal access to the best healthcare available and that the NHS and social care providers can improve their services to meet this urgent need.

We lobbied the National Institute for Health and Social Care Excellence (NICE) when we had a clinical guideline that was unfit for purpose. This resulted in a full review in 2018 and after a thorough consideration of the research evidence and of expert clinical and patient opinion, a new Guideline on ME/CFS was published in October 2021.

  • We are still waiting for a NICE Guideline on Long Covid. The NICE Rapid Response that exists is not fit for purpose, and if it is determined that Long Covid should remain a separate condition, we hope that NICE will produce a set of recommendations that are as thorough as those in the Guideline on ME/CFS.

The new NICE Guideline on ME/CFS received the charity’s full endorsement. We believe it provides a crucial set of clinical recommendations that if implemented effectively, will result in improved healthcare and a better quality of life for those affected.

Recognising ME/CFS early, receiving an accurate diagnosis, and a prompt referral to an ME/CFS specialist service that has adopted the NICE Guideline recommendations, offers the best chance for an individual to learn safe and effective ways of living with the condition.

However, not all healthcare services are adopting the recommendations and there remains patchy provision of ME/CFS specialist services (and Long Covid clinics) across the country, with no provision of ME/CFS services in Northern Ireland or Scotland.

We need to work with healthcare providers to understand local barriers to implementation and that means engaging directly with NHS primary and secondary care services, social care services, the organisations that commission them, and the organisations whose duty it is to champion patient care.

To date, we have been disappointed at the slow uptake of the NICE Guideline across the UK and the lack of improvement in patient care. We hope the Department of Health’s Delivery Plan on ME/CFS will help, but we also want to engage constructively with healthcare providers at the local level.

1. The ME Association Health & Social Care Initiative

We have started a pilot project in Buckinghamshire and will be engaging with local NHS and social care service providers, the local authority, Healthwatch, MPs and Councillors, local support groups and residents. If the pilot is successful, we shall look at extending into other counties of the UK.

We will be considering national campaigns to support our aims but given how the structure and provision of healthcare services differs so much across England and into Wales, Northern Ireland and Scotland, we determined the greatest need is to engage at the local level if we are to bring about the kind of change that is important to local people.

We predicted the project would be a learning experience and it has been. We are beginning to understand some of the challenges that the NHS and local authority face and are working to ensure that ME/CFS and Long Covid receive as equal a consideration as other chronic illnesses when it comes to the provision of healthcare.

In addition, we are being more proactive on behalf of individuals who encounter healthcare difficulties. This has meant engaging directly with a GP, consultant, specialist service or clinic, or a local authority about the specific problems an individual can encounter either around the NICE Guideline or in general about ME/CFS and Long Covid.

We hope to tell you more about the pilot and the individual engagements soon with a new website page that will provide progress updates. As the project moves forward we will continue to monitor outcomes, engage with local support groups and residents and ensure that the project is resourced effectively.

2. The ME Association Health & Social Care Report

Last year, we ran the Count ME In campaign and sought the views of people with ME/CFS and Long Covid about the health and social care they had received.

The survey attracted the biggest response we have ever received before and all of the data has been analysed by an independent academic team at Exeter University, led by Professor Helen Dawes.

We are now reviewing the report and working to get the results published in a Journal. The survey outcomes have importantly served to quantify what we already knew that healthcare provision for people with ME/CFS (and Long Covid) is patchy at best and largely inadequate across the UK.

It’s important that we get a Journal to publish the findings, because outcomes of this nature have not been published before. It will lend credibility to the arguments and help reinforce the need to implement the NICE Guideline across the UK and ensure formal training and a general raising of awareness and recognition among healthcare professionals. It will also support the need for the Department of Health’s Delivery Plan on ME/CFS to be implemented.

3. The Department of Health & Social Care Delivery Plan

In 2022 we started to work with the Department to produce a Delivery Plan on ME/CFS. This was a national initiative applicable to England, but the governments in Wales, Northern Ireland and Scotland were keen to take notice of what it contained.

The Interim Plan was published last Autumn, with Helen Whately providing the Ministerial Forward as Minister of State for Social Care. The resulting consultation saw comments from 3,000 stakeholders – including the ME Association – and, we are told, all this feedback has now been considered.

We’d hoped that the Final Delivery Plan would be published during ME Awareness Week, but following the recent Westminster Hall Debate, we learned it had been further delayed and was likely to be available in the Autumn, hopefully before the General Election.

Among other things, the Delivery Plan would support implementation of the NICE Guideline's recommendations and training for healthcare professionals, and it would recognise the need to improve health and social care services.

We haven’t seen an advance copy of the Final Plan and await its publication with a degree of trepidation, as the Interim Plan did not reflect all the issues that we and other stakeholders had identified during the official process of putting it all together.

The charity’s response to the Interim Plan reflected our concerns. We need a Final Plan that takes all of the main issues into account and for the Department or NHS England to assume responsibility for monitoring and effective implementation.

If the Final Plan is fit for purpose and if the NHS, medical colleges, and social care services for example, pay attention and adopt the recommended Actions, then we could witness a fundamental change from the top-down which would help with the Health and Social Care Initiative.

The Delivery Plan was a good project and one we feel more than justified our involvement. We certainly needed the government to pay attention and are grateful to Sir Sajid Javid for bringing this about. We can only hope that the Final Delivery Plan will lead to positive change and that any new government will similarly recognise ME/CFS as an urgent health priority.

4. Improving recognition and early diagnosis

In 2022, we initiated a campaign that targeted all GP surgeries in the UK, Channel Islands, and Isle of Man.

We sent key information about recognition, diagnosis, and management including the NICE Guideline on ME/CFS, to over 8,000 surgeries which made it the largest campaign of its kind we had ever produced.

This year, as the health and social care pilot gathers pace, we are going to be more focused in our efforts to reach frontline healthcare professionals and patients:

  • We have engaged a distribution company to ensure leaflets and posters are displayed in 3,000 GP surgeries in the UK. This will mean that we will know material is on display and that as leaflets are used, they can be replaced, and usage monitored. The campaign will run for 6 months from October, after which we will review results and decide if it’s worth continuing on a regular basis and extending to include more surgeries.
  • Many GP surgeries now use plasma screens in waiting rooms in addition to traditional leaflets, and we will be purchasing advertising space on these screens to promote awareness and recommending that if people have symptoms they should see their GP to check if they have ME/CFS or Long Covid.
  • We are also aiming to do something similar for hospital-based ME/CFS specialist services and Long Covid clinics. Working with them to ensure useful information is available to all patients while they wait for an appointment, and we are exploring ways to get similar information into hospital waiting rooms.

Improving healthcare remains a key focus for the charity: working with healthcare providers and the local community to improve local services and health outcomes.

More information on each of these related topics will be made available in due course. In the meantime, if you want to share your views with the team please email: health@meassociation.org.uk.

Russell Fleming
Head of Communications. The ME Association.

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