Monday 23 May 2022

Public & Community Health Supports Ireland

Public & Community Health Supports Ireland

Myalgic Encephalomyelitis (ME) is classified as a neurological illness since 1969 by the World Health Organisation (WHO) ICD G93.3

Myalgic Encephalomyelitis (ME) Classifications:

  • WHO Classification ICD 10 G93.3 classified as a Neurological disorder

  • WHO Classification ICD 11 8E49 classified as a Neurological disorder 

  • SNOMED Classification SCTID: 118940003 classified as a disorder of the nervous system 

  • NASS (HRB) G93.3

There are public health supports available that you may be interested in. It just takes great patience and time to deal with the Irish application processes which are slow and arduous at the best of times.

Includes information about:

  • Medical Card
  • HSE Home Support Services: Home Care Support, PA Support & Disability Services 
  • Entitlements for Carers
  • Parking Permits 
  • Complaint Processes

Please scan headings to find the service you need information about 

  (Please check for regular HSE Support Services updates at the end of the post which we will add as they occur)

Medical Card & GP Visits Card

Medical Card

An application for a medical card is means tested so it shouldn’t matter about the diagnosis. Many people with ME have had success in their application for a card.

Normally, your total household income is considered in the means test for the medical card.

To qualify for a medical card, your weekly income must be below a certain figure for your family size. Cash income, savings, investments, and property (except for your own home) are considered in the means test.


They will look at your household income after tax, PRSI (pay-related social insurance) and the USC (Universal Social Charge) have been deducted.

They will also look at expenses like:

• rent

• mortgage protection

• childcare

• mortgage • maintenance costs • house insurance • nursing home

• travel costs


If the figure they see after they take away expenses from your household income is less than the ‘qualifying income limits,’ you and your family dependants will be sent a card. Qualifying income limits are financial guidelines you would need to meet to qualify for a Medical Card or GP Visit Card.


You can find further details on qualifying income limits here



You can apply online for a medical card on This is the quickest method of getting the card. But working on a hard copy may be easier.


Alternatively, you can download a medical card application form:

Medical Card and GP Visit Card Form MC1 here




It’s a slow process gathering all the information on expenses etc. Take your time!

You can include all medical expenses (GP & Consultants receipts) as well as prescription costs. Get onto those medics for receipts or an account of your costs for attending appointments for last few years if you don’t have them.

Your chemist can also give you a list of all your expenses for the last few years if you get onto them if you’ve had regular prescription expenses. This can be much easier than gathering receipts you have kept and covers ones you haven’t kept.

This part of the work towards the application can be made easier by just making a few calls requesting those receipts or accounts of your consultations & prescriptions from GP, Consultants and Chemist. Most are helpful.

You could also include other expenses that are related to your ill health including costs of supplements and other tests/treatments/therapies.

Next, you photocopy all and send the copies with your med card application. Keep your originals in case you are asked for them later on. If you are asked for original documents at any stage remember to photocopy all for your own records.



Discretionary Card

If your income is above the limit, you may still be able to get a medical card if your circumstances would result in financial hardship without one.


The application process for the discretionary medical card is the same as for the means tested medical card, but you should also include information about your family’s medical expenses in your application.


GP visit cards

If you do not qualify for a medical card on income grounds, you may qualify for a GP visit card.

Lots of information via this link including what documents you need to apply for a medical card.

More from Citizens Advice here


HSE Home Support Services

The HSE provides various public health services to people who need care and assistance to live at home and in the community, including Home Helps, Personal Assistants, Public Health Nurses, physiotherapy, occupational therapy, day care and respite care.

The support you will receive depends on your individual needs. These supports will be provided by the HSE or by an external provider, approved by the HSE.

The HSE provides home care services through two different funding streams – the Home Support and the Home Care Package scheme

The Home Support Service is free. You do not need a medical card to apply and your income will not be assessed. However, if you arrange additional home supports, over and above the level funded by the HSE, you will have to pay for these.


Our Notes

When you look into Home Support Services you will notice that the first heading says ‘Home Support Service for Older People’, don’t let this put you off because although the Home Support Service is available to people aged 65 or over who may need support to continue living at home or to return home following a hospital stay, sometimes exceptions are made for people younger than 65 who may need support. For example, people with a disability. 

There is a lack of HSE policy for under 65s, but those under 65 will be assessed according to their needsYou may see that most Home Care packages refer to over 65s, but please persevere and apply for what you need despite that. 

     The page about the Home Support Service explains how HSE provides help and support with everyday tasks to older people living at home and they include tasks that are specifically for people over 65 which you may not want. It would be a good idea to create a list of your actual care needs and stress that they are needs that you must have supported to be able to remain living in your own home. We have notes on 'My Needs' here

·    Specific national policy relating to disability services from which local disability service policies, and the national policy/guidance which CHOs rely on to write their own local policies derive are difficult to obtain as they likely do not exist.



Home Care Support (HSE)

Read more about how to apply for a Home Support Service here

Download the Home Support application form here

Or Ask your local Home Support Office to send you a form. Here’s the link to find your local office here


How to complete the Home Support Application Form


If you are unable to apply yourself, someone can apply on your behalf. This could be your relative, a family carer, GP, or public health nurse (PHN). There is a part on the application form (Part 2) where this person explains why they are making the application on your behalf.


Completing the Application Form Yourself

Step 1. Complete the application form yourself or you can ask someone to complete it on your behalf. This could be your relative, a family carer, GP, or public health nurse.


Step 2. The completed application form should be returned to your local Home Support Office. (Contact your local Home Support Office -


Step 3. After you apply the HSE will arrange a care needs assessment to determine your home support needs. The care needs assessment is done by a healthcare professional, such as a public health nurse (PHN).


After you apply: You will be offered a Care Needs Assessment following your application for Home Support.

The assessment considers:


 - your ability to carry out everyday tasks, such as bathing, shopping, dressing, and moving around


 - any medical, health and other support services being provided to you


 - your family, social and community supports


 - your wishes and preferences



Step 4. After your assessment, at home the HSE will consider your application for a Home Support Service. They will write to you to let you know what supports can be provided.


Step 5. The HSE will inform you in writing if your application for home support is approved based on your care needs assessment and available resources at that time.



Some more information re Home Support

·       Home Help services are provided in order to assist people to remain in their own home and to avoid going into long-term care.



·       Your Home Support Service will be provided by HSE staff or by an Approved Home Support Provider who has an agreement with the HSE to provide this type of service on its behalf.


·       The Home Support Service is provided by either the HSE or one of its approved home support providers. If the HSE cannot provide the support you need then an approved provider will support you. An approved provider is usually a private agency like a Respite Care service.


·       The Home Support Service is free. You do not need a medical card to apply, and your income will not be assessed. However, if you arrange additional home supports, over and above the level funded by the HSE, you will have to pay for these.



You can download the Home Support Service application form by going to the end of this page here


Or contact your Local Home Support Office and ask them to send out a form (Contact your local Home Support Office -

Complaints Procedures

If you have a complaint about any aspect of the Home Support Service you can contact the HSE. You can do so in the following ways:

·       Ring - LoCall 1890 424 555: Your call will be answered by a staff member from HSE Consumer Affairs.

·       Talk to any member of HSE staff, service manager or complaints officer by contacting

the local health office.

·     Your Service Your Say


Your Service Your Say

Use the Your Service Your Say feedback and complaint service if you wish to make a complaint or bring an issue to the attention of the HSE here

There are many ways you can tell the HSE about your experience:

Fill in the online feedback form

Email HSE at

Fill out the paper feedback form and put it in the feedback box or give it to a member of staff.

Send a letter to the service - a staff member can give you the contact details.

Call HSE on 1890 424 555 from 9am to 5pm Monday to Friday. Call 045 880 429 from a mobile.

Call HSELive on 1800 700 700 from 8am to 8pm Monday to Friday and 10am to 5pm on Saturday.


If you're not able to give feedback yourself, ask a relative, carer or advocate to do this for you.


To express concern about your experience the complaint is best put in to and it will be sent to the relevant hospital or service.

When you put in a complaint the following ‘should’ happen!

1) Send complaint to

What to include in a complaint:

Describe what happened and when, if it made you feel uncomfortable, what made it feel ‘not ok’ to you

Who was involved.

What your concerns are.

Have you done anything to resolve this matter.

What you want to happen now.

Please provide any extra information and copies of other relevant documents.


2) Your Service Your Say should forward your complaint to the relevant area and a complaint officer should be assigned.


3) If you made a written complaint, Your Service Your Say will let you know that they have received your complaint within 5 working days. The Complaint Officer may contact you within five working days or you ‘should’ receive a formal communication by email or letter within five working days telling you the name of the complaint officer, the issues you have raised and the completion date.


4) Then YSYS will look into your complaint and respond to you within 30 working days.

They may contact you to ask for more time, if needed and keep you updated every 20 working days after that.

They might call or ask to meet you to hear more about your complaint.

Within thirty days of the report, the ‘accountable officer’, that’s the person responsible for the service should write and tell you that they have accepted the recommendations and if they’re not accepting them, why not.

They should also offer ‘redress’ - an apology, reassurance that this will be put right - for you and others.


5) The response should have findings and recommendations. When you get the response, it should tell you about your right to have a Review or to go to the Ombudsman.

If you are not happy with the outcome of your complaint, you can ask for an internal review by the HSE. You can also ask for an external review from the Ombudsman or the Ombudsman for Children.

These are options if you think:

- they haven’t addressed all the issues they raised

- you think they haven’t looked at all the evidence/have ‘got it wrong’

- they haven’t followed the process as described above and didn’t give you a chance to ‘tell your story’



All of the above is what ‘should happen’. Too often it doesn’t.

It’s important we know what the process is so that we can hold our HSE services to account.

It’s also important for us to remind the HSE that their purpose is to provide ‘Public Value’ - that is that the Public, us, find the services we use useful, fit for purpose and helpful.



If there’s a clinical element to your complaint that will be dealt with by the Quality and Patient Safety (QPS) staff.

You can include the effect of that Consultant/Dr on you, their attitude, did they give you the information you needed to give informed consent, did the Dr appear to have the knowledge of the illness, did you feel there was care, compassion and that you could trust them, did you feel respected, were you treated with dignity can all go under a complaint.

The difference is the YSYS process is a legal one, set in law which the HSE ‘has’ to follow, though practice is mixed across the country.

The clinical judgement piece relies on the Open Disclosure policy and the Incident Management Framework, but the QPS staff should engage and listen to you and address any concerns about clinical judgement.

HSE practice is inconsistent and very much depends on which member of HSE staff responds to your concerns.

There is an increasing will to learn from Service User’s experience in the HSE, the culture is slowly changing - but there’s a long way to go!

Private hospitals also have complaint systems though only those funded by the HSE that are subject to a complaint process based in law and can be taken to the Ombudsman.

Children’s Hospital Ireland receives funding from the HSE, so their complaint process is required to follow the YSYS process with access to the Ombudsman if needed.




Personal Assistant (PA) Support

How do I get Personal Assistant care and support at home?

Notes: There is currently no standardised procedure in Ireland for administrating personal assistance hours.

A right to a personal assistance service for disabled people is fundamental to achieving that vision, however, currently there is no right to personal assistance in Ireland.

By making more home help hours available, i.e.  by focusing on home help hours over personal assistance, many disabled people are prevented from living independently in any real meaningful way.

Personal assistance services are funded by the HSE and may be provided by a voluntary sector organisation such as Irish Wheelchair Association (IWA) or it may be provided by another organisation that the HSE chooses.

Contact must be made with your local HSE health centre via the Public Health Nurse (PHN) to make an application for a Personal Assistant.

Please note that 

  • the application process for a Personal Assistant is different in each area and is dependent upon the funding available. 
  • To be eligible for the public service the individual must have a primary impairment that is either physical or sensory in nature. The service is available to adults under 65 years of age and is essential for many people with disabilities, including people with ME, if they are to pursue quality lives in society both inside and outside the home.
  • There is no one process for individuals to access PA services in Ireland as it varies around the country. Applicants may be more successful applying through the Disability Services Area Manager in their local HSE area.
  • Recent services have been organised through ‘service packages’ by Disability Area Managers. These services are contracted by the HSE directly with a Service Provider to provide a defined number of PA hours to a named disabled person.
  • Personal Assistant services can also be purchased privately. IWA operate a private service. IWA at Home Tax relief is available on Personal Assistant services purchased privately.



Our Tips and other comments Re the application process for Personal Assistant Support 

1. There is currently no standardised procedure in Ireland for administrating personal assistance hours. A right to a personal assistance service for disabled people is fundamental to achieving that vision, however, currently there is no right to personal assistance in Ireland. 
Unfortunately there is a post code lotto when it comes to getting a PA in Ireland especially when it comes to an ME diagnosis, and unfortunately there are still many parts of the HSE that don’t recognize ME or class it as a disability. The different CHO's (Community Health Organisations - there are 9 of them) have different systems & different assessments & those assessments can differ within the same CHO. No consistency in approach so no equitable assessment model.

As ME is not on the list of approved disabilities at most local disability services people have experienced the situation where they are being told that they are not even entitled to get an assessment, please keep in mind the fact that the Government states that Disability Services are NEEDS based, not diagnosis based.

It’s not up to someone to say whether you’d get a PA or not based on a diagnosis name, it’s up to the needs assessment that takes place following an application, and that assessment will look at your disabling symptoms and the severities of those symptoms that prevent you from being active. 

2. What to include along with your application for a Personal Assistant i.e., along with the application form. 

  • ME is a disability and is recognised by the CCO who is responsible for the current HSE ME Clinical Guideline Working Group project. It is also recognized by the HRB under its WHO classification G93.3. You could include those two facts about ME into an additional page along with your application form for a PA. 

  • You could also include on the additional page a before and after essay, i.e. a few paragraphs explaining what you could do before illness and about the difficulties you have now that prevent you from being active; what investigations, treatments and therapies you have tried. You need to get across what it is that prevents you from doing x y and z and that without support you are incapable of buying groceries, preparing and cooking food, cleaning, doing laundry, attending medical appointments etc etc.
    ME won’t qualify as a disability unless you clearly outline what the disabilities and difficulties are.

  •  If you have any copies of any test results that indicate disabilities include those with your application form.

  • In addition to the above you could include a completed My Needs Statement  - based on the HSE’s 'National Guidelines on Accessible Health & Social Care Services' (2014) the 'My Needs Statement' template can be edited to suit you when faced with the problem of how to explain ME & ‘My Needs’, please see My Needs Statement Template

  • You could also include a completed DSQ2 Symptom and Severity Questionnaire by DePaul which would evidence disabling symptoms and symptom severities. You could have the completed questionnaire certified by your GP. The questionnaire is subjective, the GP’s input would be to say they agree with your details of your illness, DSQ2 Symptom & Severity Questionnaire

  • You could also include a completed PEM Questionnaire (De Paul DSQ PEM Questionnaire - DPEMQ)

    Post Exertional Neuroimmune Exhaustion (PENE) is a key symptom of Myalgic Encephalomyelitis (ME). PENE is referred to as PEM by others. The PEM questionnaire by De Paul is a questionnaire on the post exertional response, i.e., PEM (PENE as per the ICC), an essential criterion for an ME diagnosis. See more on PENE (PEM) further on in this guide.

    By answering the questions, you get an idea of how ‘activity’, anything you do physically, cognitively, emotionally, affects you and what your individual post exertional response is, i.e., what symptoms occur and increase. Every person with ME is different. The post exertional response for a lot of people might not occur straight away and tends to be delayed 24 hours or 48 hours after activity. The questionnaire includes key indicators that show within answering a set of questions that it sounds like ME. PEMQ Questionnaire

  • You could include a ticked Bells Severity Scale

    The Bell's Disability and Severity Scale is a good scale that could be used along with the categories Mild, Moderate, Severe, Very Severe, Profound, to determine near exact range. Different people suffer in different ways but the scale gives an idea of the level of disability. It may be the case that it doesn't reflect your severity exactly but it is a useful tool for some patients to get across the extent of their ME severity to medics & others. See the scale here.

  • You could include a ticked Functional Ability Scale

    A functional ability scale is an important tool to help you work out where you are with your ME severity, we include the one from Action for ME here

Include as many as possible of the items listed above to evidence your disabilities and difficulties, pace yourself and take your time to get through the task by breaking up the tasks and doing them over time. 

3. If someone in Disability Services or elsewhere tells you that ME is not a disability and that it is likely you would not be entitled to apply for a Personal Assistant or that you would not get an assessement, I’d insist that they provide you with the PA application form anyway, stating that you’d like to proceed with the application. You could also ask for the policy around the PA assessment for people with disabilities under 65. It’s not up to anyone to decide whether you can make an application or not. Ask for the application form and the policy to be emailed to you or posted to your home address.

If you are denied an opportunity to apply for a PA service and told that ME is excluded as a disability by the person you are dealing with in Disability Services, you could ask for their email address and send an email with the following content:

Dear X,
I am including a response from National Community Operations to an ME Advocates Ireland patient advocate.
The statement: ‘Services are provided on the basis of assessed need rather than diagnosis and take into account the individualised requirements of people’ is a standard now stated which your area is not complying with by denying an assessment because ‘ME is not on the list of disabilities’.
This is the national position dated 09/02/23; I wonder why you are not adhering to it. There has been significant work undertaken to enable people with chronic illness to live their lives at home; the HSE provides Personal Assistants and Home Support Services as well as Respite Services and Therapeutic Supports, Aids and Appliances, that are designed to enable people to live as independently as possible. 
Services are provided on the basis of assessed need, rather than diagnosis, and take into account the individualised requirements of people.
Kind regards,


You could cc the National Director Yvonne O’Neill into your email to:
Yvonne O' Neill is from the Office of the National Director Community Operations - Health Service Executive Room 1.33, Dr. Steeven’s Hospital, Dublin 8 - D08 W2A

4. Applying for PA Support can be a lengthy and draining process for someone with ME. It appears that keeping up with communications to your local disability service via phone calls and emails over time may help you get an opportunity for assessment.

Personal Assistant (PA) service provides all aspects of non-medical support to people with disabilities. These support needs vary from person to person and as a result can evolve and change in assisting the individual to lead an independent life. The person-centered personal assistance service ensures individuals are free to be self-directing of the service they receive. This approach is part of promoting equality and empowerment for people with disabilities.


5. Read what Independent TD Thomas Pringle has said re the importance of a dedicated PA Support Service in a Dáil Motion in November 2019 and the supportive responses from other TDs here

6. Sometimes the HSE links we provide to various information can be changed and updated so the links we provide may not work anymore, if this is the case please search for the specific area you are interested via Google etc.


7. National Service Plan 2022 - National Service Plan (NSP) for 2022 sets out the services that will be provided to the people of Ireland for the investment entrusted to the HSE and within the strategic context of the HSE Corporate Plan 2021-2024 See here

‘Reform of Home Support

During 2022, in support of older persons, we will also continue to take forward the implementation of new integrated models of home and community support. This will enable increased access to care and supports at home and in the community, thus reducing the requirement for long-term residential care and acute services.’


‘Reform of Disability Services

The HSE is committed to delivering the key health and social support services that are required by people with a disability. This necessitates an incremental approach that lays firm foundations for developing services to improve the experience of care and services. Through reform programmes, we will support people with disabilities to live a full life in the community with access to a range of person-centred community services and supports, across their life spans. We will work to ensure compliance with standards and the highest quality of life of each individual. We will also reduce the number of people living in institutional settings by providing more appropriate community-based accommodation.’


See Pages 54 – 58 via this link here



 8. Disability Legal Information Clinic –  Online!

The Disability Legal Information Clinic, run by the Centre for Disability Law and Policy in NUI Galway provides free, accessible, confidential legal information on disability related legal issues and is available right across Ireland for disabled people, their families and supporters. The clinic is staffed by law student volunteers who are supervised by a member of the CDLP team and a qualified legal practitioner. In the past the clinic has dealt with issues in relation to housing, education, employment, discrimination and access to supports or services. To find out more about the clinics work visit the website. 

You can also email if you have any questions or would like to arrange an appointment. See more here

HSE-Funded Assisted Living Information from the irish Wheelchair Association

Your local HSE health centre, hospital, or Irish Wheelchair Association service can advise or support you on how to apply for an assisted living service. The number of hours of support you are allocated is agreed between you and the HSE.


On receiving the service, personal assistants will be assigned to come to your home each day or week for a number of hours allocated by the HSE to support you with your individual needs. This may include for example, assisting with personal care, household chores, supporting you during study or work, playing sports, pursuing your hobbies or socialising.


If you are new to the service, it can take a bit of time to work out how you would like to use your personal assistant hours, but there is support to help you through this transition and to help you in deciding how to make the most of the service.

Please read about HSE-Funded Assisted Living here

Disability Services - Communty & Social Care

Disability Services would be the go-to service for a person with disabilities. It is not a self-referral service;
please get a GP referral if your GP is supportive.

The HSE provides and funds a range of services for people with disabilities and their carers. These services include basic health services as well as assessment, rehabilitation, income maintenance, community care and residential care respite, home care and daycare.

Some services are provided directly by the HSE. Community, residential and rehabilitative training services are provided by voluntary organisations with grant aid from the HSE.

More information is available via the HSE link (there is nothing specific for under 65s so it may be helpful to access disability services via your GP). 

There’s a link to Disability Services in your county, under the 'Related Links' heading, see here:

Useful Tools to support you when applying for Home Help Services.

Some useful tools can be sent to HSE at certain stages in your dealings with them, e.g. along with your application for home care support/PA Service, when sending a complaint via Your service Your Say, when meeting the manager of Home Care Services or another carer agency for the first time.

These include:

Personal Care Plan. See blog post for template here

My Needs Statement. See blog post for those documents here

Symptom & Severity Questionnaire, PEM Questionnaire, Bells Disability Scale, International Consensus Criteria & Primer, all available in this blog post here

About Making a Complaint or Appealing a Decision

Are you unhappy with a public service you received or were you denied a service you think you were entitled to?
Please see more information about making a complaint or appealing a decision here


Entitlements for Carers


Carers Support from the HSE  - What’s Available here

How to apply for Carers Allowance

Citizens Information here

HSE Information here


The lists and links via the link here are to help you to check out all the main services and entitlements for carers.


Carers Support Grant

Application form along with full details on the Carer's Support Grant are available via the link here

You can find out more about your rights & entitlements as a family carer in the comprehensive guide here


Other Carer Supports 

- Family Carers Ireland

National Freephone Careline 1800 24 07 24 twitter /Carersireland

email: -


Membership of Family Carers Ireland (FCI) 

(FCI) is the national charity representing Ireland’s 500,000+ family carers who provide care in the home to loved ones, family members, relatives, friends and neighbours of all ages.

‘Our focus as an organisation is on family carers. We are the charity that asks the carer how they are. Whether you are caring for a young child or an adult with an intellectual or physical disability, a spouse with a terminal illness, an ageing parent or a loved one with a mental health illness, FCI is here to help you maintain your caring routine and to inform policy and public debate surrounding family caring.

We understand that family caring can be rewarding but also a struggle and when you need our help, we are standing by to support you. We believe that no one should have to care alone.

Your membership and involvement counts. Carers’ strength comes from unity in numbers.  The bigger our carer community grows, the stronger your voice becomes on issues directly related to family caring.’ – FCI 

See link here



- Support via Facebook pages

Family Carer Support Group specifically for family Carers in Ireland to network and support each other here


Another Facebook page for family Carers here






Parking Permits

Did you know that the Irish Wheelchair Association launched an online portal which allows first time applications apply for a parking permit and allows existing customers to renew their parking permits online?

View the disabled parking permit portal here




Feedback from ME Advocates Ireland (MEAI) & the ME Community re Public Services


-        A focus on the Irish situation with regard to the essential service of Carers and Personal Assistants (PA) for people with disabilities as a result of having ME via link here




-        A Focus on Home Support Feedback to ME Advocates Ireland (MEAI) has shown that the application for Home Support is a very tricky process that takes time. It is a postcode lotto in that some CHO areas in the country can be more helpful than others. Most CHO areas do not recognise ME as a disability so it will be a case of getting it across to them that you have an illness that causes disabling symptoms that prevent you from working and taking care of yourself. Always think of your worst day and try to get that across. You could use consultants and GP letters as support and to convey the difficulties you experience as a result of having an illness.


If the public health nurse (PHN) replies saying you are not entitled to an assessment get back to them and ask on what criteria did the HSE base that decision and ask for a copy of the policy.

If you get a face-to-face assessment with the public health nurse have a friend or family member present and let them speak on your behalf and explain your difficulties. Let them answer the door, etc. and show evidence of your disabilities and difficulties 

If you get turned down, again ask the public health nurse what policy the HSE follow to do the assessment and make the decision and ask for that policy.

Make sure that you get a contact number and email address for the PHN. Having an email address to contact the PHN creates a paper trail to back you up. They don't like giving emails, but you can insist on one.

Might be worth using the name Myalgic Encephalomyelitis (ME) and correct them when they speak about ‘cfs’ or chronic fatigue telling them chronic fatigue is a symptom of many illnesses.


ME is now coded in the National Ability Supports System (under the Department of Health’s Health Research Board - HRB) as G93.3 which is the WHO ICD 10 Code. Therefore, we need to press all bodies and employers to refer to ME as coded in the Health Department’s own codes. 



 Personal Stories 

Story 1.

-        In the world of disability (HSE), ‘you can do it once, you can do it all the time’ is the pervasive, unrealistic & dismissive culture. Read a couple of personal stories from people who struggled to get appropriate care for their needs from the HSE.

Christine Fenton has had ME for 30 years. She gave a harrowing account of one of her worst times living with Severe and Very Severe ME about when she faced many horrendous hurdles including those she met trying to access various HSE healthcare services.


Story 2.  

·       Support outside the home comes under PA support (Personal Assistant) only available to those with a disability. As ME is not on the list of approved disabilities at most local disability services people have experienced the situation where they are not even entitled to get an assessment, but keep in mind the fact that the Government states that Disability Services are NEEDS based, not diagnosis based.

It appears that keeping up with communications to your local disability service via phone calls and emails over time may eventually get you an opportunity for assessment.

Corina Duyn, a person with Severe ME, started the process through her Public Health Nurse, who fought alongside her on her behalf. Disability Services had totally dismissed her because of ME. Applying for PA Support can be a lengthy and draining process for a healthy person whatever about someone with ME. After a two-year long battle with the HSE Corina finally managed to be awarded full PA hours (Personal Assistance) to have control over her life and to also be allowed to leave her home with her PA. The whole process that Corina was involved in is documented in various posts on ME Advocates Ireland’s Blog here



09/02/23 In relation to HSE Disability Services

For anyone engaging with Disability Services, especially those who are told ‘ME is not on our list of disabilities’ here is a response from National Community Operations here, received on 09/02/23

The statements:
1) ‘Services are provided on the basis of assessed need rather than diagnosis and take into account the individualised requirements of people’ is a standard now stated which if your area is not complying with the national standard by denying an assessment because ‘ME is not on the list of disabilities’ you can quote the national position dated 09/02/23 to them and ask why they are not adhering to it, copy National Director Yvonne O’Neill into your email:

2) ‘I have also included the link National Framework for developing Policies, Procedures, Protocols and Guidelines that the CHOs rely on to develop policies and guidance:’ which infers that your local disability services ‘should’ have a policy which they rely on which describes their operational processes.
Ask for the policy and Servce User information from your CHO area manager so you know what to expect from a service.

More on National Framework for Developing Policies, Procedures, protocols and Guidelines here

There has been significant work undertaken to enable people with chronic illness to live their lives at home, it is however recognised that these services are not available to all patients and there is much more work to be done.
The HSE provides Personal Assistants and Home Support Services as well as Respite Services and Therapeutic Supports, and Aids and Appliances, that are designed to enable people to live as independently as possible. Services are provided on the basis of assessed need, rather than diagnosis, and take into account the individualised requirements of people.

With regards to Disability Benefit, Invalidity Allowance, etc there is no harm in letting the Department of Social Protection know that our HSE is not excluding anyone based on the name of their illness, which strongly suggests they too should be assessing against need not name.
The Equality Act says no one should be discriminated against because of their disability - excluding someone because they have an ‘ME’ label rather than another ‘acceptable’ label would seem not to be lawful, though a case would need to be brought and a judgement made so there was case law to rely on.



MEAI's Pre-Budget 2024 Submission here

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