Exploring the barriers that impact access to NHS care for people with ME and Long Covid

Summary

For healthcare to be safe it needs to be accessible. But what does this look like for people with ME (myalgic encephalomyelitis) and Long Covid? This blog from #ThereForME explores the barriers that impact access to NHS care for people with ME and Long Covid, and encourages the patient community to share their experiences.

Content

What is ME and why is accessing care difficult?

ME (myalgic encephalomyelitis, sometimes referred to as ME/CFS) is a complex, chronic condition affecting multiple body systems.[1] Symptoms include debilitating cognitive dysfunction and post exertional malaise (PEM)—the exacerbation of symptoms following exertion, which can sometimes lead to a long-term deterioration—the cardinal symptom of ME.

Patients with ME have one of the worst qualities of life of any disease: lower than various forms of cancer, multiple sclerosis or chronic renal failure.[2] The most severely affected patients are reliant on full-time care, sometimes becoming unable to speak or swallow, and may require hospital care to avoid dehydration and malnutrition.

Since 2020 at least two million people in the UK have been affected by Long Covid. Approximately half of those affected meet the criteria for ME (though not all have been formally diagnosed), alongside those who have developed other long-term health issues following Covid infections.[3]

For people with ME and Long Covid, accessing healthcare, whether for these or other conditions, can be challenging. PEM means that it can be difficult to receive care without risking a deterioration in symptoms, especially when reasonable adjustments are not made to minimise the exertion involved. A lack of knowledge, misunderstanding and stigma around the conditions exacerbate the issue, sometimes making patients reluctant to seek care and clinicians unlikely to understand the adjustments that are needed.

Together, these and other barriers mean that people with ME and Long Covid may avoid, delay or be completely unable to seek the care they need, creating risks for patient safety.

Difficulties accessing care at home

A 2023 public consultation highlighted failures in the health service that included the accessibility of NHS care for people with ME—particularly for housebound or bedbound patients.[4] This was echoed by a 2024 #ThereForME survey of over 300 people with ME and Long Covid (and their carers).[5] Two-thirds of people responding to our survey said that the NHS had not been there for them when they needed it. The overall accessibility of care was highlighted as a core concern.

Housebound patients answering our survey reported struggling to get access to home visits for monitoring and routine screenings or even remote/phone appointments. Patients reported delaying or avoiding seeking care as a result, or in some cases turning to private care as the only option to facilitate routine investigations. Learnings from care for other conditions can show how similar barriers have been addressed—for example, progress in care for people with learning disabilities.[6]

Hospital systems and environments

People with ME and Long Covid often experience difficulties navigating energy-intensive NHS systems and hospital environments. For many, the process of arranging and receiving medical care may go well beyond their limited energy envelope. This includes challenges like inflexible booking systems, appointments that are changed or cancelled at short notice, long journeys to medical appointments or needing to coordinate with multiple referrals and clinicians.

Patients may delay seeking care, even in emergencies, due to the toll that a busy hospital environment is likely to take on their chronic symptoms. Particularly in A&E and inpatient care, busy waiting rooms and hospital wards may exacerbate sensitivity to noise, light and movement. Patients may be unable to sit upright in waiting rooms for long periods of time without their symptoms being exacerbated.

While reasonable adjustments are key to accessibility,[7] and the 2021 NICE Guideline for ME/CFS outlines some adjustments that may be needed,[1] knowledge of the Guideline is limited in the NHS and the majority of NHS Trusts and Integrated Care Boards are not implementing it.[8] More widely, limited knowledge about ME, and similarly Long Covid,[9] means that patients don’t receive treatment that is sensitive to their symptoms—and, crucially, that avoids exacerbating them—because clinicians lack basic knowledge.

People with ME and Long Covid, who are often particularly vulnerable to infections, may also avoid seeking healthcare due to concerns about acquiring infections. Many people with Long Covid report deterioration after Covid reinfections,[10] as the pandemic continues far from the headlines and with few measures in place to prevent airborne transmission. This may also impact the ability of family carers to access healthcare themselves, fearing acquiring an infection which could set back their loved one’s health.

Trauma in healthcare

Traumatic experiences in healthcare also play a role. Many patients with ME and Long Covid have experienced feeling dismissed or disbelieved, sometimes discouraging them from seeking care in future. The 2024 #ThereForME survey documented multiple cases of patients who said that, due to such experiences, they would be reluctant to seek NHS care even if experiencing life-threatening symptoms, expressing a sentiment that they would ‘rather die at home’ than seek healthcare in an emergency.[5]

ME is significantly more common among women,[11] meaning that experiences of stigma linked to the condition overlap with gendered experiences of healthcare,[12] including how pain among women is routinely dismissed.

Sharing your experiences

We hope this blog has shone a spotlight on some of the challenges people with ME and Long Covid face when accessing care. If you have ME or Long Covid, or care for someone who does, we’re keen to hear about your experiences:

• Have there been times where you delayed or were unable to access the care you needed due to these or other challenges?
• Have you or the person you care for experienced an exacerbation of symptoms due to exertion involved in seeking healthcare?
• What would make the biggest difference to you to make care more accessible?
• Do you have any experiences to share where reasonable adjustments were made or a member of staff went out of their way to make it easier for you to access care?

We’ll be collating the experiences shared and exploring what can be done about it. You can share your experience by posting in the Comments field below or join our conversation in the Community area of the hub.

References

1. NICE. Myalgic encephalomyelitis (or encephalopathy)/chronic794457 fatigue syndrome: diagnosis and management. NICE guideline [NG206], 29 October 2021.
2. Falk Hvidberg M, et al. The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLOS One, 2015; https://doi.org/10.1371/journal.pone.0132421.
3. Dehlia MA, Guthridge MA. The persistence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) after SARS-CoV-2 infection: A systematic review and meta-analysis. J Infection, 2024.
4. Department of Health and Social Care, Department for Education and Department for Work and Pensions. Consultation outcome. Improving the experiences of people with ME/CFS: interim delivery plan, 9 August 2023.
5. ThereForME. Building an NHS that’s there for Long Covid and ME, July 2024.
6. Anderton M. Exploring deep sedation at home to support people with learning disabilities to access medical investigations with minimal distress. Patient Safety Learning, 17 July 2023.
7. Brar P. Diagnostic safety: accessibility and adaptations–a (un)reasonable adjustment? Patient Safety Learning, 19 September 2024.
8. Action for M.E. Patchy, Misunderstood and Overlooked Implementation of the NICE Guideline [NG206] on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome in England Freedom of Information Findings Report, May 2023. 
9. Patient Safety Learning. Long Covid: Information gaps and the safety implications. Patient Safety Learning, 7 June 2021. 
10. WHO. Knocked back by COVID-19 reinfection – the experience of Abbie, a British nurse living with long COVID. World Health Organization, 30 November 2023.
11. DecodeME. Initial findings from the DecodeME questionnaire data published, 24 August 2023. 
12. Anonymous. One hour with a women's health expert and finally I felt seen. Patient Safety Learning, 7 November 2024.

About the Author

Karen Hargrave is the co-founder of #ThereForME, a patient- and carer-led campaign calling for an NHS that’s there for people with ME and Long Covid. #ThereForME is calling for change to enable the NHS to provide safe and meaningful care to help patients to manage symptoms, improve their quality of life and ultimately rebuild their lives. The campaign is supported by 23 organisations and smaller initiatives working with people with ME and Long Covid. Karen is a carer to her husband James, who developed very severe ME following a Covid infection, and she is also affected by ME herself.