"Outstanding Care for Injuries, Yet Patient Safety Risks for People with M.E."

I am writing to provide feedback on my recent attendance at the Emergency Department following a fall, which resulted in right broken arm and badly sprained left hand. (Using voice to text ChatGPT due to both arms injured)

1. Excellent Clinical Care

I wish to begin by expressing my sincere gratitude for the care I received. The nurses, radiology staff, and the attending doctor were compassionate, and highly skilled. Blood pressure checks, blood tests, heart traces, and X-rays were performed efficiently and with kindness.

I am very appreciative of the high standard of clinical treatment provided for my injuries.

2. Experience with Myalgic Encephalomyelitis (M.E.)

Alongside my injuries, I live with M.E., a condition that limits my ability to sit or stand upright for long periods and increases sensitivity to light, noise, and sensory overload. I explained this on arrival and again during my care. One triage nurse kindly said she would try to arrange a reclined, quiet space.

About 4 hours later, a second request to lie down during a second heart trace was declined, (although kindly) explained by a different nurse, cubicles were said to be reserved for more serious cases. By this stage I had become so increasingly exhausted and disoriented I realised there was no point in trying to explain further. The need for extra blood pressure and heart traces tests are explained below.

On a ‘good’ M.E. day, I can tolerate sitting or standing upright for a few hours by carefully pacing my activities. I use the Visible HR monitoring app, recommended by HSC Health Apps, which helps me stay within safe exertion limits and avoid triggering post-exertional symptom exacerbation or post-exertional malaise (PEM)

This tool provides real-time feedback that supports my self-management and if made aware of the Visible App, would greatly helps staff understand more about M.E. and the consequences of over-exertion.

So far, despite Digital Health & Care NI (DHCNI) endorsing the Visible App for self-management of M.E., available to download on their website, I have yet to come across one healthcare provider who understands the benefits of proper pacing or has recommend the App to an M.E. patient.

As a result of the prolonged upright posture and environmental stress (7 hours), I am experiencing severe PEM. Recovery from PEM is unpredictable and may take days, weeks, or even months.

This is not just an issue of comfort but a patient-safety concern, as understandable and unavoidable waits in emergency care should not result in preventable, long-term deterioration.

Since developing M.E. as a result of an acute viral infection 26 years ago, the maximum length of time I can tolerate being upright, without dire consequences, is 2 hours and requires pacing this with rest periods in-between, on a ‘good’ day. ‘Bad’ days are still spent 24/7 bed-bound.

3. Physiological Considerations

People with M.E. often experience autonomic dysfunction, meaning that prolonged sitting or standing, pain, and environmental stress can cause temporary rises in heart rate and blood pressure. These changes are a normal physiological response and do not necessarily indicate a new or worsening medical problem. Awareness of this can help staff interpret vital signs correctly and reduce unnecessary stress for patients with M.E.

4. Recommendations for Patient Safety

To prevent avoidable harm and improve patient experience, I respectfully request that the hospital consider:

-Staff training and awareness of M.E., including the impact of PEM and sensory overload.

- Review and implementation of reasonable adjustments in emergency settings, including provision of reclined spaces and consideration of light and noise exposure.

- Inclusion of M.E. in patient safety protocols, recognising that lack of accommodation can result in preventable harm and prolonged recovery.

- Make staff aware of the 1-hour M.E. Clinical Update, available for healthcare providers on GPNI website.

Conclusion

I am extremely grateful for the excellent medical care I received for my injuries, and particularly, the care received from the attending doctor. My intention in sharing this feedback is to highlight the need for increased awareness and education of M.E. and to ensure that patients receive not only outstanding clinical treatment as I did, but also necessary adjustments to safeguard their health and safety.

Thank you for taking the time to consider this feedback.