Information, Support, Planning Ahead and More

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: 

Condition Specific Details 

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 

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: 

•  Nursing Home Support Scheme 

•  Medical Cards 

•  Drug Payment Scheme 

•  Long-term Illness Scheme 

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 

1. The Irish Cancer Society’s financial support programme offer relief to families experiencing difficulty due to a cancer diagnosis. 

2. The ICS Children’s Fund is available to assist children on active treatment for a cancer diagnosis 

3. 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