Information, Support, Planning Ahead and More
Referrals
All referral forms should be sent to the palliative care provider. www.iapc.ie/localservices
The process of accessing palliative care inpatient care in a hospice is through referral from the Palliative Care team in the hospital.
The patients team (medical, surgical, whatever team they are) needs to refer to the hospitals Palliative Care team first. The patient can self-refer to the hospitals palliative care by requesting this from his team directly and or speaking with his nurse and making a formal request.
A family member can ask for a formal family meeting where the current situation is explained and care plans are made and outlined. They can make a formal request to the team either via the ward manager or through the hospitals patient liaison office.
In a home environment, a referral for Palliative Care must come from your GP.
Do not leave hospital without the following: Prescription, Palliative Care plan in place
Develop an Advanced Healthcare Directive
The recommended way to plan future healthcare is to put in place an Advanced Healthcare Directive, a document that is recognised in law. You can also appoint a Designated Healthcare Representative to be your future voice, should this be required.
In this document you will record future healthcare preferences including treatment approached, surgery, medicines and resuscitation.
You can talk with your Doctor about making one – and keeping it where it can be easily found.
The Irish Hospice Foundation has helpful resource called The Think Ahead Planning Pack which includes a template that you can follow to complete the Directive. See www.thinkahead.ie or for information go to: www.safeguardingireland.org
Make a Will
Along with the Advanced Healthcare Directive, a person should also make a will. A will is a written document that sets out what you would like to happen to your possessions after you die. A will must be signed and witnessed.
When you die, your possessions are called your ‘estate’. A ‘testator’ is a person who writes a will. If you die without leaving a will, you die ‘intestate’.
For further information go to https://www.citizensinformation.ie/en/death/before-a-death/making-a-will/
Assisted Decision Making (Capacity) Act
The Assisted Decision-Making (Capacity) Act 2015 is a law that establishes a new legal framework for supported decision-making in Ireland. It allows people to make legal agreements on how they can be supported to make decisions about their personal welfare, property and affairs. For further information go to: https://www.citizensinformation.ie/en/health/legal-matters-and-health/assisted-decision-making-act/#:~:text=Further%20information-,Introduction,personal%20welfare%2C%20property%20and%20affairs.
HIQA – Lexicon for Social Care
The Lexicon provides a list of commonly-used words relevant to social care, along with a definition. The use of standardised language is important for clarity and consistency and all providers of social care are encouraged to use the Lexicon in their communications with HIQA.
https://www.hiqa.ie/hiqa-news-updates/hiqa-launches-first-its-kind-lexicon-social-care-ireland
For further information on palliative care go to: https://aiihpc.org/our_work/the-palliative-hub/
Organisations:
Bereavement NI provide information, support and resources to people who have recently lost a loved one. It also contains very practical information, like organising a funeral, financial and legal advice and useful contacts in Northern Ireland. https://bereaved.hscni.net/
The HSE is the overall provider of Palliative Care in Ireland. They have developed resources and information to help families and patients in their time of need. One such resource is booklet for people going through bereavement.
Is this booklet available on the HSE website?
Yes, it’s located on the HSE website here.
How do I order copies of this booklet?
Hardcopies of the booklet are now available to order:
1. Visit: www.healthpromotion.ie
2. From the Search by topic list, select ‘Bereavement’.
3. Click on ‘Bereavement: When someone close dies’ booklet and place your order
Please visit our website to get contact information for patient referrals: www.iapc.ie/localservices
From bereavement to education, healthcare to public engagement, to our vital services like Nurses for Night Care and our Bereavement Support Line, we are constantly developing and expanding our supports and services, to make sure we’re responding to the needs of those who need us most.
Assisted Decision-Making (Capacity) Act 2015. This Act in now in place since 2023 and replaces the need for the Power of Attorney
How to make your own Advance Healthcare Directive – Make you choices know before you have any health or personal care issues, care after death.
ICS listen to patients and their loved ones and support them by providing free information and care. We fund cancer research to find better treatments that will save more lives. We work to keep cancer on the Government’s agenda, to make sure the Irish healthcare system functions as well as possible to help cancer patients and their loved ones through their diagnosis. Funded through the Irish Hospice Foundation, ICS provide Nurses for Night Care, referrals to the service are made by your local specialist palliative care home care team which can be accessed through your GP/consultant.
If you or someone you know has been affected by cancer, ICS can support you. Find out about their new free cancer Support Packs.
Contact freephone helpline 1800200700
Condition Specific Details
Alzheimer Society of Ireland
ASI provide information/training and freephone helpline to those living with or caring for people with dementia. ASI has a virtual Dementia where users can find music, poetry, puzzles and activity packs to enjoy at their leisure. Freephone 1800341341
COPD
COPD Support Ireland and IHF produced the booklet ‘Planning for the future with COPD’. It was developed after a series of workshops with people with COPD and family carers. If you or someone you know has recently been diagnosed with COPD, this booklet may not be appropriate to read as a first resource. More information at www.copd.ie.
Dementia
This booklet, published by the Alzheimer Society of Ireland with support from IHF, provides information and practical advice to support people with dementia in making decisions about what is important to them now and into the future. Free booklet I have dementia: How do I plan for the future?
Irish Motor Neuron Disease
The British Motor Neurone Disease Association (MNDA) has published the comprehensive guide ‘End of life: A guide for people with motor neurone disease‘ for people with MND to plan ahead and communicate their end-of-life decisions to family and professionals. https://imnda.ie/ Also see IHF
Irish Heart Foundation
The Irish Heart Foundation collaborated with IHF on this information booklet for people living with advanced heart failure. Free booklet: Planning for the Future:
Living with Advanced Heart Failure. https://irishheart.ie/
Irish Hospice Foundation:
Advancing Neurological Illness : https://hospicefoundation.ie/wp-content/uploads/2021/01/Neurological-Illness-Booklet-March-2017-Final.pdf
The Neurological Alliance of Ireland (NAI)
The Neurological Alliance of Ireland (NAI) brings together over thirty non-profit organisations to advocate for the rights of 860,000 people in Ireland living with a neurological condition. Neurological Conditions affect the brain and spinal cord. https://www.nai.ie/
Family Supports
The Palliative Hub has been developed by AIIHPC with a number of palliative and hospice care stakeholders to act as a gateway to information and resources about palliative care on the island of Ireland.
The Hub seeks to deliver this information and resources to a number of audiences through five different components:
- Children and Young People
- Adult
- Carers
- Learning Platform
- Professional
Anam Cara provides monthly online and face-to-face group meetings throughout the island of Ireland. These are open to all bereaved parents with an emphasis on peer support. We also facilitate additional online bereavement support evenings with featured guests speakers who give an insightful talk about parental grief. If you are recently bereaved, these provide a gentle introduction to our services and we really hope you will consider attending one of our events in the future. Anam Cara can be contacted and our resources viewed or downloaded from our website.
Our Face to Face and Online groups meet monthly between September and June each year.
Please get in touch and know you are not alone at info@anamcara.ie or call/text 085 2888 888
Community development organisation, working to tackle inequalities among ethnic minority communities by improving ethnic minority access to health services, and ethnic minority participation in health planning and delivery.
Website: https://cairde.ie/
The Online Family Carer Support Project, an initiative of Care Alliance Ireland, supported by funding from the Health Service Executive, the Community Foundation of Ireland and the National Lottery, offers peer-to-peer support to family carers all around the country. The support group, which was set up in March 2020 in the wake of the Covid-19 pandemic, is moderated by a mix of health and social care professionals and family carers, offering a safe space to discuss all aspects of the life of a family carer, to ask and receive advice, and learn from other members experience. Email : info@carealliance.ie
A statutory body that supports the provision of information, advice and advocacy on a broad range of public and social services. It provides the Citizens Information website, citizensinformation.ie, and supports the network of Citizens Information Centres and the Citizens Information Phone Service 0818 07 4000 to provide free, confidential, independent and impartial information to all.
Website: https://www.citizensinformation.ie
For over 30 years, Chronic Pain Ireland has campaigned tirelessly on behalf of members for improved access to care and greater education within the healthcare community and society. https://chronicpain.ie
Providing independent patient advocacy since 1995. The Irish Patients’ Association’s mission is to keep the patient at the centre of the healthcare system. It does this by advocating for the needs of patients to be paramount while working in partnership with health providers. https://www.irishpatients.ie/
Nursing Homes Ireland is the national representative body for the private and voluntary nursing home sector. There are over 460 such nursing homes in Ireland providing care to over 25,000 people. Our mission is to actively support and represent our members, enabling them to provide sustainable, high quality care to their residents. www.nhi.ie
Sage Advocacy is a support and advocacy service for vulnerable adults, older people and healthcare patients. https://www.sageadvocacy.ie/
A free and confidential service, independent of the HSE, that provides information and support to people who want to make a complaint about an experience they have had in a HSE public acute hospital or a HSE operated nursing home through the HSE’s Your Service Your Say process or through the HSE’s Incident Management Framework, where a person has been involved in a patient safety incident.
The HSE has developed a Memorandum of Understanding (MoU) with the Patient Advocacy Service that sets out their commitment to ensure that people receive a timely, compassionate and comprehensive response to their complaints. The MoU recognises that every person has the right to make a complaint about the service they have received from HSE public Acute hospitals, while the HSE also recognises the important role that independent patient advocacy can play in the HSE’s complaints processes, ‘Your Service Your Say’ and the Incident Management Framework. Website: www.patientadvocacyservice.ie
Children’s Palliative Care
CANTEEN Ireland
CanTeen Ireland is a nationwide support group for young people between the ages of 12 and 25 years who have or have had cancer.
We were founded by a group of dedicated health professionals in May 1990 and have since grown from strength to strength.
Our aims are to support, empower and develop young people who have, or have had cancer. CanTeen Ireland provides an opportunity for young people who have been affected with cancer to meet up in a relaxed and informal setting. Membership is free and we only ask our members to make a small contribution towards the cost of weekends away. https://www.canteen.ie/
FirstLight offers free professional support and provides information to families in Ireland that have experienced the sudden, unexpected death of their child if aged from 0 to 18 years.
FirstLight is a trauma-informed organisation, offering a National Helpline service, Crisis Intervention and a Psychotherapy service. Our services are provided nationwide by our team of professionally accredited, fully insured and Garda-vetted psychotherapists and counsellors. Our team members are professionally trained to provide support to clients experiencing trauma associated with the sudden death of their child. All of our services to families are free of charge and confidential. info@firstlight.ie
The Jack and Jill Children’s Foundation offer a child and family centred care service and believes that families should be supported to care for their children in their own homes. The Liaison Nurse Manager (LMN) in your area will make contact with you once a referral has been received. Our service offers the expert support of the LMN who will advise, help and advocate for your family as well as overseeing the in-home nursing service. The service to families is reviewed on a six-monthly basis.
LauraLynn’s mission is to provide a Community of Care that delivers evidence-based, personalised services to children with palliative care needs, complex care needs and complex disabilities, while also providing family support services and a home to our residents where quality-of-life is paramount. https://www.lauralynn.ie/
Make-A-Wish Ireland has one simple aim – to grant the wishes of children with life-threatening medical conditions, to bring hope, strength and happiness.
Since 1992, Make-A-Wish has granted wishes for more than 3,100 brave children across Ireland, including 197 wishes granted in 2023 alone. A wish granted is true magic for the child, providing respite from their normal routines of hospitals, doctors and treatment. Make-A-Wish does not receive any government funding and relies overwhelmingly on the kindness of the Irish public to continue granting wishes.
As a well-respected and popular children’s charity, Make-A-Wish is fully committed to providing the maximum level of care and enjoyment for our children and their families. This is achieved through a combination of professionalism, attention to detail and sensitivity. Nothing is too much trouble for a wish child.
In all possible cases, Make-A-Wish ensures that all immediate family members can participate in the child’s wish. In doing so the family can create lasting, happy memories. www.makeawish.ie
Complaints Procedure
Who do you first contact?
Following HIQA regulations every healthcare organisation has a complaints process in place. You or family member needs to find the department responsible in the facility they refer to. They are often called Patient Liaison, Patient Advocacy, Patient Experience office; in smaller organisations such as Nursing/Care homes, the Person in Charge is dealing with complaints. They need to contact that department and state that they wish to make a complaint. That office will talk them through the complaint process and issue information. Please see www.iapc.ie/localservices for contact details or hospice services. Please see www.nhi.ie for Nursing home contacts.
If you were not happy with the response, what further options are available?
If the complainant is not satisfied with the response from the healthcare organisation, they can escalate their grievance to the Ombudsman for Health. However, they have to work through the local process first. The organisation has to be given the opportunity to respond and rectify or implement changes.
Does the HSE have a system in place?
This website has information about the process and also links to HSE Complaints Officers: https://www.hse.ie/eng/about/who/complaints/ysysguidance/listening-responding-to-feedback/thecomplaintsprocess.html
Financial Supports
HSE
Supports for Carers
The Department of Social Protection provides a range of financial and other supports to Carers to help with the financial burden of caring and assist the caring organizations in meeting the support needs of Carer’s and their families, including;
- Carer’s Allowance
- Care Sharing
- Carer’s Benefit
- Carer Support Grant (formerly the Respite Care Grant)
- Domiciliary Care Allowance
- Homemakers Scheme (Pension Entitlements Accrual)
- Mobility Allowance
Other Supports
Water Conservation Grant, Fuel Allowance, Living Alone Allowance and other supports
The HSE provides benefits and services to thousands of families and individuals in Ireland, and all of the schemes are provided for in law to make the cost of health and medical care more affordable for all.
For more information on specific schemes, see:
MABS
MABS is a free and confidential service for people in Ireland with debt problems and money management problems. There are 52 MABS offices in Ireland, staffed by trained Money Advisers who can help you deal with your debts and make out a budget. Money advisers can examine your income to make sure you are not missing out on any of your entitlements, contact your creditors on your behalf with offers of payment if you are not able to do it yourself and help you decide on the best way to make the payments. www.mabs.ie
Marie Keating Foundation
Comfort Fund
The Marie Keating Foundation hopes to lessen the financial burden associated with a cancer diagnosis and has been doing this through its comfort fund service since 2004. Each year, a limited budget is allocated to the service.
Each application is assessed on an individual basis. It takes a minimum of 21 days to process an application and occasionally it may take longer.
Please check with your Medical Social Worker, as you and your family may be entitled to government support such as Illness Benefit, a Medical Card, Carer’s Allowance or housing support. https://mariekeating.ie/cancer-services/comfortfund/
Irish Cancer Society
Financial Support
- The Irish Cancer Society’s financial support programme offer relief to families experiencing difficulty due to a cancer diagnosis.
- The ICS Children’s Fund is available to assist children on active treatment for a cancer diagnosis
- Travel2Care is a nationwide transport support fund to assist patients who have a genuine financial difficulty in meeting some of the costs of travelling to appointments
Questions & answers
Frequently Asked Questions
Membership in the Irish Association for Palliative Care (IAPC) is open to professionals across various disciplines involved in palliative care, including doctors, nurses, social workers, counsellors, therapists, educators, administrators, and more.
- Education, networking and development opportunities.
- Access to membership only events such as workshops & webinars.
- Free membership to the European Association of Palliative Care (EAPC).
- Access to a knowledge sharing network of 53 national palliative care associations in 30 European countries.
- Reduced rates for IAPC & EAPC events.
- CPD points for relevant events.
- Access to the members only section of the IAPC website.
Membership of the IAPC is made up of doctors, nurses, educators, therapists, dietitians, chaplains, allied health professionals and many others with an interest in palliative care.
Membership runs from the date of joining i.e. if you join in March your membership runs from March – March. Statements will be issued several times throughout the year.
Yes. Please advise any of your details change, home address, work address, work title, phone number & email.
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