Exploring barriers that impact access to NHS care
Our blog with Patient Safety Learning - and how you can share your experiences
We told you recently that we’d be back with more on the accessibility of NHS care for people with ME. Today we’re sharing a new blog post with Patient Safety Learning, exploring the challenges faced by people with ME and Long Covid in accessing NHS care.
You can find the original blog here. We’d also love friends of #ThereForME to join the conversation on Patient Safety Learning’s Hub and share your experiences (energy permitting). Have you delayed or been unable to seek care because of your symptoms? Have you deteriorated from the exertion involved in seeking healthcare? What would make the biggest difference to make care more accessible? We want to hear from you.
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 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.
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. 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. 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.
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. This was echoed by a 2024 #ThereForME survey of over 300 people with ME and Long Covid (and their carers). 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.
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, and the 2021 NICE Guideline for ME/CFS outlines some adjustments that may be needed, knowledge of the Guideline is limited in the NHS and the majority of NHS Trusts and Integrated Care Boards are not implementing it. More widely, limited knowledge about ME, and similarly Long Covid, 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, 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.
ME is significantly more common among women, meaning that experiences of stigma linked to the condition overlap with gendered experiences of healthcare, 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 joining our conversation in the Community area of the hub.
I had a serious panic attack last year which made me wonder whether my time had come as it felt like a heart attack. I didn't consider going to A&E as I have previous experience how it works when I had a previous attack and from when I cared for my late husband. As things have gotten even worse I felt I'd rather pass away at home and be free of ME than put myself through the ordeal of A&E. My GP will respond to suggestions from me but is never proactive. I once copied an article from the ME Association magazine and she seemed interested, but the next time I saw her it turned out that she hadn't had time- ie she wasn't interested after all. I saw a neurologist who diagnosed CFS which isn't the same as ME. As he'd offered to amend the letter he sent if it required changes and additions I wrote to him but haven't haven't heard back from him. It's been 3 months, and I had to wait for 3 months for his previous letter.
Unfortunately, the lack of a national campaign for the past 5 years has made it impossible to warn the public about the adverse effects of long covid and possibly developing ME. Plus the decommissioning of long covid services, the service I work is under Cheshire & Merseyside, and the ICB has announced decommissioning of all 9 long Covid teams across the area from 31st March. We are ultimately concerned for our patients and their overall wellbeing and future support or lack of x