Hospital Care for People with Severe and Very Severe ME

Key Points:

Challenges of Hospital Care for Severe ME Patients

• Hospitals are often unsuitable environments for those with severe ME due to sensory sensitivities (noise, light, etc.) and lack of understanding about the condition.
• Experiences in hospitals can vary: while some report poor treatment, others note satisfactory care when appropriate adjustments are made.

Recommendations for Hospital Care

• Preparation for Elective Admissions:
  • Patients should liaise with staff to ensure reasonable adjustments, such as low-stimulus rooms (e.g., dark, quiet spaces).
  • Personalized care plans and established relationships with ambulance services can improve hospital experiences.
• Outpatient Care Improvements:
  • Utilize telemedicine options like phone or video appointments to minimize the need for in-person visits.
  • For necessary visits, request domiciliary appointments or accommodations for sensory needs (e.g., quiet waiting areas).
• Transport Considerations:
  • Ambulance services should be informed about the patient’s needs (e.g., lying flat, avoiding shared rides, no radio).
  • Some ambulance services offer “wait and return” services to reduce stress.

NICE Guidelines on ME-CFS (NG206)

• Advised adjustments for inpatient and outpatient care:
  • Single rooms, minimized sensory stimuli, and personalized care plans.
  • Avoid discharging patients due to missed appointments related to ME symptoms.
  • Risk assessments to prevent worsening symptoms during interactions.
• Severe ME patients may need tailored nutritional support or tube feeding.

New Resources for Advocacy and Care

• Hospital Pack: Created collaboratively by ME advocacy groups to help patients and carers request reasonable adjustments.
• ME and Anaesthesia Factsheet: A guide addressing considerations for surgery in ME patients, including a related podcast.

This document highlights the importance of understanding and addressing the unique needs of severe ME patients in hospital settings to ensure compassionate and effective care. Let me know if you’d like assistance with formatting or further customization!