Tuesday, 17 February 2026

Transportation - Attending Healthcare Appointments with Severe ME

  








We are very aware of the significant challenges people living with ME, and particularly Severe ME,  face when trying to attend healthcare appointments. 

For many, leaving their bedroom and home can trigger profound deterioration due to post-exertional malaise (PEM), sensory sensitivities, pain, orthostatic intolerance, and extreme mobility limitations. Even necessary medical care can come at a high physical cost.

At present, we are not aware of a dedicated or specialist transportation service in Ireland specifically for people living with Severe ME. However, we hope that the information below may offer some practical options that could help someone plan safely for a scheduled healthcare appointment. 


The suggestions below are simply based on the services we are aware of.




Speak with Your GP

For individuals who are bedbound or housebound due to Severe ME, we suggest clearly informing your GP that:

  • You are bedbound due to Severe ME.

  • You have significant mobility limitations.

  • You experience immediate and severe post-exertional malaise (PEM) in response to exertion or stimuli.

  • You have multiple sensitivities (light, sound, touch, movement).

  • Attending appointments risks serious symptom worsening.


When arranging care or transport support, it can help to raise these questions directly:

  • Can my appointment be done remotely (phone/video)?
  • Can appointments be consolidated or rescheduled to minimise travel?
  • Are there home‑visit options or outreach services?
  • Can reasonable adjustments be made (e.g., quiet waiting areas, shorter visits)?
  • Is specialist patient transport available (especially for severe cases)?
  • Ask whether they can request non- emergency patient transport for your appointment (for example, for an MRI), including:
. Appropriate physical assistance
. Safe handling
. Support with stairs in your home
. Minimal waiting times where possible



 

Health Service Executive (HSE) Transport

The HSE provides non-emergency patient transport often free for people with a medical card or with a GP referral, to day hospitals, outpatient departments, and certain hospital services, depending on eligibility, criteria and location. Availability is not condition-specific.

You can:

Availability varies by area, so it is important to check locally.





Local Primary Care Office / Public Health Nurse

You can contact your local Primary Care Office by phone or email:
https://www2.hse.ie/services/primary-care-centres/

The local Public Health Nurse may be able to advise on or arrange support. You can contact them directly or ask your GP to assist.

 




Wheelchair Accessible Taxis

Some people may consider a wheelchair accessible vehicle (WAV), depending on their level of severity.

A county-by-county list of wheelchair accessible taxis is available through Transport for Ireland:


For individuals who are less severely affected and able to sit upright for a journey, TFI Local Link may be an option:
https://www.transportforireland.ie/support/your-tfi-local-link-office/



 


Private Ambulance Services (Mayo Area)

Those living in Mayo may consider Murray Ambulance Service (private provider). They are based in Mayo and may serve surrounding counties.

Phone: 094 92 50 999
Website: https://www.murrayambulance.ie/

Private services may involve significant cost, so it is advisable to discuss requirements in detail beforehand.





Online/Over the Phone Appointments

Online or telephone-based appointments provide a vital alternative that improves access to care while minimizing physical strain.

Benefits:

Traveling to appointments can trigger symptom flare-ups. Online or telephone appointments remove the need for transport, long waits in busy environments, and physical exertion.


Patients can schedule appointments around their energy levels, choosing times when they are least symptomatic. This flexibility is particularly helpful for those with fluctuating symptoms and severities.


People who are housebound or bedbound can access medical care without leaving home. This is a significant improvement over traditional in-person consultations, which may otherwise be inaccessible.


Remote appointments ensure regular follow-ups and monitoring, which are crucial for managing chronic conditions like ME. This is especially valuable when travel or illness prevents in-person visits.



Practical Considerations

  • Video appointments require a stable internet connection and a device with a camera and microphone. Telephone appointments need only a phone line. Some patients may need assistance setting up technology.


  • Some examinations and diagnostic tests cannot be performed remotely. Clinicians may need to rely on patient-reported symptoms or schedule in-person tests selectively.


  • Remote consultations can be more private, reducing stress from clinical environments.

  • Patients can also remain in a comfortable setting, potentially improving communication and symptom reporting.



Tips for Patients

  • Write down symptoms, medications, and questions beforehand to make the most of the time with the clinician.
  • Minimize distractions and background noise during calls or video consultations to allow clear communication.
  • If video calls are taxing, request telephone appointments. Some clinicians may provide shorter, staggered sessions if exhaustion, no energy and functional limitations are a barrier.
  • Keep a written record of advice, prescriptions, or next steps discussed during the appointment, since remote interactions may feel less formal than in-person visits.


Healthcare systems should provide flexible options for consultations.



HSE Online Appointments

  • The HSE supports the use of online health appointments across many hospital and community services, including follow‑ups, results reviews, and chronic disease management.

  • These are conducted by your existing healthcare providers using video (and sometimes phone) calls so you don’t need to travel.

  • Not all specialist services may offer telehealth, especially where physical examinations or tests are needed, so it’s worth asking your clinician whether an online appointment is suitable before booking


More here



Whether with the HSE or private providers:

  • You book a time slot online or by phone with your GP/doctor.

  • The GP/doctor contacts you via video or telephone at the agreed time.

  • After consultation, you may receive prescriptions, sick certs, or referral letters digitally or by email. 






Further Information

 

Free Travel Scheme 


A Free Travel Pass has been expanded to include people who:

  • Have never been able to drive due to a disability,

  • Or are medically certified as unfit to drive for 12 months or longer.

  • This means eligible individuals can travel free on state public transport (bus, rail, Local Link, Luas, and some private services).

  • A doctor’s certification is required as part of the application process. 

 

More details here





Nice Guidelines NG206, 2021

The UK National Institute for Health and Care Excellence (NICE) guideline on ME/CFS (NG206, 2021) includes specific recommendations about access to care, which explicitly mention transport and physical accessibility. 

Key points from the guideline:

  • Healthcare providers should take into account how far a person with ME/CFS has to travel, including transport and parking, when arranging and planning appointments.

  • Timing, length, and frequency of appointments should be adapted to a person’s needs - this is to reduce the burden of travel and waiting.

  • Alternative formats such as online consultations, telephone reviews, or home visits should be offered where appropriate to avoid unnecessary travel.

  • People with ME/CFS should not be discharged from services if they cannot attend due to symptom flare‑ups, including travel‑related barriers. 




1.8 Access to care and support

1.8.1 Ensuring services are accessible

Health and social care organisations should make sure people with ME/CFS can use their services by:

  • Adapting timing, length and frequency of all appointments to match the individual’s abilities and energy levels.

  • Considering physical accessibility, including travel distance, transport options, parking and the exact location of appointment rooms.

  • Taking into account sensitivities to light, sound, touch, pain, temperature extremes or smells.

  • Providing care flexibly, such as through online or phone consultations, or by offering home visits where appropriate.


 

1.8.2 Managing missed appointments

 If a person with ME/CFS misses an appointment:

  • Do not discharge them for non‑attendance; it may be due to symptom worsening. 

  • Discuss the reason for the missed appointment and how the multidisciplinary team (MDT) can better support attendance in future. 

 

 

1.8.3 Recognising barriers to attendance 

Clinicians and service providers should be aware that people with ME/CFS are unlikely to be seen at their worst because:

  •  debilitating symptoms or risk of worsening may prevent them from leaving home. 

  • Cognitive difficulties may delay contact with services until the person feels able to explain their needs. 






















1.8.4 Hospital Care

To improve access to inpatient and outpatient care for people with ME/CFS:

  • Discuss with the person who needs inpatient care whether any environmental factors could cause problems during hospital care. 
  • Consider room placement (e.g., a single room if possible), accessibility of toilets and washrooms, and environmental triggers such as lighting, sound, heating or smells. 








Reasonable Adjustments Information Pack

Information Pack: Supporting People with Severe ME in Hospital or Other Healthcare Setting by ME Advocates Ireland (MEAI) here







Further Resources


Hospital Transfer Notes 

Providing written Hospital Transfer Notes can help ambulance staff and hospital teams understand Severe ME and the risks involved. Clear written instructions may help reduce harm and prevent deterioration.

A template is available (this must be edited and completed by you or someone caring for you before use). See the template here

  

Hospital Transfer/Hospital Stay Notes Sample document here




Accessible Setting

It may be useful to explain the challenges you will face because of Severe ME before an appointment; please see link to Create an ME Accessible Healthcare Setting




The Gurney Guide for Severe ME Transportation 

This guide by Galen Warden, mum to person with severe ME is a US piece but has relevant sections here


     

     


    We Would Appreciate Your Feedback

    If you, or someone you care for, has specific experiences with transport services in Ireland for chronic illness/disability that safely supported attendance at a healthcare appointment while living with Severe ME, we would greatly appreciate hearing about it. 

    Sharing lived experience may help others in similar situations.

    We invite you to reach out to us privately, either by email at info@meadvocatesireland.com or via direct message (DM) on any of our social media pages. Your privacy is very important to us: all information you share will be handled with complete confidentiality, and anything we share will be fully anonymised.


    at
    Labels:

    No comments:

    Post a Comment

    Subscribe to: Post Comments (Atom)