Advocacy and Policy

What We Do

The Irish Kidney Association advocates for the needs of kidney patients, transplant recipients, living donors and their families. We work with policymakers, healthcare professionals and stakeholders to help improve kidney services and patient outcomes across Ireland.

VHI Women's Mini Marathon | Irish Kidney Association

Key Advocacy Priorities

Work towards improved patient care and experience

The patient’s in-centre dialysis experience can be very different, depending on location. For example, Tallaght hospital has recently opened a new dialysis unit with increased capacity, whilst the dialysis unit in Sligo remains overcrowded with patients waiting in a narrow corridor.

The IKA will work behind the scenes and in public to keep the issues affecting kidney patients and their families high on the agenda of public discourse around healthcare and the planning and provision of renal treatment services.

We aim to achieve this objective by:

  • Supporting and working with the relevant agencies for increased transplantation of both deceased and living donor organs.
  • Establishing multi-lateral dialogue relationships with renal units/consultants and the HSE.
  • Supporting academic standard surveys of patient experiences to understand the treatment journey and to highlight the particular problem points to be addressed.

What are the intended outcomes?

  • The development of a care experience which enables renal patients to have as normal a life as possible.
  • Patients and their families to have access to the right care, delivered by the right clinicians, in the best place, at the most convenient time.

Lobby for changes to policy and practice

Patients with ESKD do not exist in a vacuum. Improvements in healthcare services, for example a higher rate of organ transplants, can be lifechanging. An increase in disability benefit or mileage payment for travel can make life easier and less stressful.

The Association will lobby policymakers in the health system and wider government to reform and improve services for kidney patients and to implement changes that will increase access to treatment options and improve the quality of life for patients with ESKD.

We aim to achieve this objective by:

  • Ensuring the IKA consults with its member group and patient members and carers.
  • Working closely with Organ Donation and Transplant Ireland (ODTI) and other stakeholders to improve organ donation awareness and successful transplantation rates.
  • Providing a voice for patients and carers on issues that affect them, seeking representation on relevant groups and committees that address the needs of kidney patients.
  • Developing a plan for our lobbying.
  • Monitoring progress on Government commitments and holding Government and agencies to account for delivery of these commitments.
  • Preparing position papers with evidence-based recommendations and input from IKA members for policy and practice change, and in the delivery of services to kidney patients.
  • Collaborating and partnering with other stakeholders in the healthcare, not-for-profit, education, disability, community and social justice sectors.
  • Mobilising our membership to make publicly visible the support for a better kidney health system.

What are the intended outcomes?

  • Key policy changes to be made to improve outcomes for kidney patients.
  • The Association to be at the forefront of the drive for changes at Government, medical, service and societal levels.
  • Improved organ donation services in Ireland and increased awareness and prevalence of organ donation.
  • Policymakers to be aware of the work of the Association and its impact on patients and their families.

Deliver patient-centred research

Research can lead to improved treatments and can also lead to better understanding of the patient experience and needs.

We understand the need to continuously push the boundaries of our scientific understanding of kidney disease and other morbidities which affect renal health. We will support and contribute to the understanding of this with a particular focus on a variety of research disciplines. These will help to illustrate and contribute to the improved general health and wellbeing of kidney patients.

We aim to achieve this objective by:

  • Identifying research academic partner(s) to carry out patient-centred research using a participatory action focus approach. This approach involves working with the people in the system as co-participants in the inquiry with a view to transforming that system from within as a principal focus of the research process itself.
  • The IKA will be included in, and be an active participant in, the research design process.
  • Research tenders, contracts, and memorandums of understanding will be approved in advance of the research funding/process commencing and will comply with charity corporate governance standards.
  • The Research Report and recommendations will, prior to publication, be finalised in partnership with the IKA, launched, and then published.
  • Research topics funded by the IKA will be based on academic/social field’s best practice, be peer reviewed where appropriate, and only be on ‘a not-for-profit’ basis.

What are the intended outcomes?

  • A number of research projects, in respect of improved outcomes for kidney patients, to be led and supported by the Association.
  • The Association to have a genuine impact on the national and global understanding of kidney disease treatment and to make a measurable difference both to the health service in Ireland and patients’ experiences.

Publications and Submissions

Explore the Irish Kidney Association’s advocacy initiatives, policy submissions and collaborative projects aimed at improving kidney care, supporting patients and families, and strengthening services across Ireland.

Download

Pre-Budget Submission 2027

Our pre budget submission can be downloaded here. The submission calls for greater investment in preventing people from developing end-stage kidney failure, as this is the approach most likely to attract the attention of policymakers and secure long-term improvements in kidney care.

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General Election 2024 Leaflet

At election time, political parties put their manifestos to the public for consideration and when the votes are counted, negotiations begin to develop a Programme for Government that will underpin policy for the term of the next Dail. Download this leaflet and use it give focus to any discussions you have with election candidates you meet between now and November 29th. Print it off and give them a copy to take away.

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General Election 2024 Manifesto

Read our comprehensive election manifesto that outlines crucial measures aimed at addressing the needs of the nearly 500,000 individuals in Ireland living with Chronic Kidney Disease (CKD).

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Living with End Stage Kidney Disease in Ireland: Patient Experience Report 2025

The Irish Kidney Association, in partnership with the HSE National Renal Office and researchers at RCSI University of Medicine and Health Sciences, commissioned the first national survey examining the experiences of people living with End Stage Kidney Disease (ESKD) in Ireland.

Advocacy Team

Volunteer in sports jersey promoting Irish Kidney Association awareness.

Colin White

National Advocacy Manager