At Stripy Lightbulb CIC, as part of our collaborative annual BED for Severe M.E. campaign with our sister social enterprise ME Foggy Dog, we’ve spent the past few weeks exploring a pressing issue that affects some of the most clinically vulnerable patients in our healthcare system: the delivery of remote care for individuals with severe Myalgic Encephalomyelitis (M.E.).
Remote care has the potential to be a lifeline for patients who are too ill to attend appointments in person. Yet, our recent survey of healthcare professionals revealed a troubling reality, remote care for severe M.E. is often perceived as professionally risky, and that perception is creating barriers to access.
We conducted a short survey targeting healthcare professionals, asking five key questions about remote care for patients with severe M.E.:
- What makes remote care feel unsafe or professionally risky in your experience?
- What would help you feel more confident and supported when delivering remote care to severely ill patients?
- Are there examples from other conditions or services where remote care is safely managed despite limited face-to-face contact?
- What practical steps or safeguards could help reconcile the safety needs of both patients and staff in remote care?
- Do you have any other thoughts or suggestions?
We received three responses. While this is a small sample, we’re deeply grateful to those who took the time to share their insights.
However, three responses alone do not carry enough weight to influence national policy or service provision in a meaningful way. To advocate effectively for change at the level of the Department of Health and Social Care (DHSC) or NHS England, we need a broader evidence base, one that reflects the diversity of professional experiences and challenges across the healthcare system. Without it, the urgency of this issue risks being overlooked.
Still, even these few responses offer valuable perspectives and underscore the urgency of the issue.
The professionals who responded highlighted several concerns:
- Clinical uncertainty: Without the ability to conduct physical assessments, clinicians feel they may miss critical information.
- Lack of clear protocols: The absence of NHS-endorsed mandatory guidelines for remote care in severe M.E. creates ambiguity and hesitancy.
- Professional risk: There’s a fear of making decisions without sufficient data, which could have legal or ethical implications.
These concerns are not trivial. They reflect a system that hasn’t yet adapted to meet the needs of patients who cannot physically access care.
Despite the challenges, respondents offered constructive ideas for improving confidence and safety in remote care:
- Specialist training: Equipping professionals with condition-specific knowledge and remote assessment skills.
- Digital tools: Using technology to enhance communication and monitoring.
- Structured support: Creating frameworks that guide clinicians through remote care processes.
These suggestions point toward a future where remote care isn’t just possible, it’s safe, supported, and effective.
This work is part of a broader effort to address the disconnect between what people with M.E. need and what healthcare professionals feel able to provide. Without clear protocols and institutional support, remote care is often underused, not because it’s unnecessary, but because it feels unsafe.
For patients with severe M.E., this gap in care can be devastating. Many are housebound or bedbound, and in-person appointments are simply not an option. Remote care isn’t a convenience, it’s a necessity.
What’s Next?
Stripy Lightbulb CIC is committed to continuing this work. We’ll be expanding our data collection, engaging more professionals, and advocating for informed, compassionate remote care solutions. We believe that with collaboration, training, and policy support, we can build a system that works for everyone.
If you’re a healthcare professional with experience or thoughts on remote care for severe M.E. we’d love to hear from you, and if you’re part of an organisation already working toward better outcomes for people with M.E., let’s connect.
Together, we can make remote care safer, more accessible, and more responsive to the needs of those who depend on it most.
