Public & Community Health Supports Ireland
- 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
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 mymedicalcard.ie. 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
There is a lack of HSE policy for under 65s, but those under 65 will be assessed according to their needs. You may see that most Home Care packages refer to over 65s, but please persevere and apply for what you need despite that.
Home Care Support (HSE)
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 - HSE.ie)
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.
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 - HSE.ie)
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
yoursay@hse.ie
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 yoursay@hse.ie
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 yoursay@hse.ie
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
- 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
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,XX
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.
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
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 dlic@nuigalway.ie 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
Useful Tools to support you when applying for Home Help Services.
About Making a Complaint or Appealing a Decision
Carers
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
www.familycarers.ie
twitter /Carersireland
email: - careline@familycarers.ie
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.
-
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.
· 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
Updates
09/02/23 In relation to HSE Disability Services
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