Introducing the National Member Forum
The National Member Forum was created to unite patient voices across Ireland with one goal - to ensure patient experiences directly shape the future of the IKA. Together, members will develop a clear framework for supporting resolution of patient issues, create strategies to influence the delivery and improvement of health care services in Ireland, and influence the quality of care and service provided by the IKA. They will also influence IKA policy, practice and advocacy positions to help future-proof the IKA. Watch our short video to learn more.
Nominate your Branch Representative
To get started, each Branch will need to nominate a representative to the Member Forum. We’ve created a document below setting out the requirements a Forum member will be expected to meet to represent their branch, including having lived experience using kidney disease services in Ireland (including patients, family members and carers) and the ability to use that experience constructively as a member of the Forum.
We've also shared details of the nomination process below. We encourage branches to nominate their Member Forum representative before 3rd October. Doing so will ensure your representative receives an invitation to our Training & Strategy Day in Athlone, which will be held on 11th October. If you have any questions, please drop us a line using the form below.
FAQs
Purpose
The National Member Forum was created by our National Board to ensure the Association is more representative and led by kidney patients, and their families and carers. The Board drafted and approved the Forum's Terms of Reference that governs how the Forum will operate.
Once established, the Forum's voting members, primarily patients, family members, and carers, can propose changes to its operations and structure.
The operating environment for national charities has grown increasingly complex, requiring our Board to dedicate significant time and energy to stringent regulatory, governance, and financial obligations. While this compliance is essential for safeguarding assets and maintaining public trust, it must not come at the expense of our core identity of being patient focused.
The IKA was founded by and for patients and their families. The National Member Forum is our strategic initiative to preserve this patient-led legacy while adapting to modern demands. It future proofs the IKA by creating a dedicated Member Forum that ensures the patient voice remains the central influence on our strategy, services, and advocacy.
This clear division of focus allows the Board to excel in its legal and governance duties, while the Member Forum champions the patient perspective. Together, this ensures we not only meet today's compliance requirements but also remain authentically patient-centred in all we do, both now and in the future.
The Member Forum will serve as a platform to ensure patient experiences directly shape the future of the IKA. Together its members will:
- develop a clear framework for supporting resolution of patient issues
- create strategies to influence the delivery and improvement of kidney health care services in Ireland; and
- provide critical insights on the quality of IKA care and services.
The Forum will formally advise the IKA Board through written reports that detail member forum discussions, concerns, proposals, and strategic priorities. These contributions will be integral to shaping the IKA's policy, practice, and advocacy, ensuring the patient voice remains at the core of the IKA's mission, both now and in the future.
Membership
The Forum will consist of no more than 35 members, comprising of voting and non-voting members. Voting members will include one representative from each of the 25 branches of the IKA and IKA key patient-focused staff. These representatives may be kidney patients or family members / carers of kidney patients. Non-voting members will include the CEO of the IKA, a facilitator for operational purposes and expert advisors as needed.
The members will appoint a Chair, Deputy Chair and Secretary. At least 51% of the members must be patients, with representation from both dialysis and transplant patients. Non-members may be invited to the Member Forum for a specified period / purpose if needed. This must be ratified by a vote with details agreed in advance. This might include experts in a particular field.
If there are more than 35 potential members at any time, forum members will decide how to best achieve maximum of 35 members. If members cannot agree, the Chair of the Member Forum will consult the IKA CEO and Board Chair to reach a decision.
A maximum of 14 voting members can hold another formal role in the IKA, e.g. a branch officer, peer support volunteer etc. If more than 14 hold another formal role, the longest serving Forum member must step down. This is to encourage maximum participation by a broad range of members.
When it created the National Member Forum, our Board granted voting rights to a few key, patient-facing staff roles to ensure a strong link to IKA for support and accountability. The relevant staff members are our Patient Services Manager, National Advocacy and Projects Manager, and the National Volunteer and Organisation Development Manager. The CEO is also member but does not have a vote.
These members bring essential, broad knowledge of patient issues, the Irish healthcare system, and previous IKA campaigns. They represent a small proportion of the Forum membership.
Once established, the Forum's voting members can propose changes to its membership structure and operations.
No. The requirement is that representatives must have extensive lived experience with kidney disease services in Ireland. This can include family members or carers of kidney patients, who can offer a unique perspective on the patient experience. However, at least 51% of the Member Forum must be made up of patients (as distinct from family members or carers).
Yes. at the moment, branches can nominate a member who is also a Board Director.
This will change in the future once the Member Forum is fully established and formally enshrined in our Constitution (following a vote by members). At that point, any Member Forum representative who is later elected on to the Board, can remain on the Member Forum, but only as a non-voting member.
No. Your branch will not be excluded. The deadline of 3 October is only to ensure your representative can be invited to the Branch Officer Training and Strategy Day on 11 October in Athlone, which we highly recommend for their benefit.
You are entitled to nominate a representative at any time. If you miss the October 3rd deadline, please elect and nominate a representative as soon as possible afterwards, as we plan to hold the first National Member Forum meeting in November 2025.
Branch representatives will participate in an induction training session and sign the IKA Code of Conduct before appointment to the Member Forum. Once established, it will be a matter for the Member Forum members to determine if further training is required on a particular topic depending on the requirements of members at any given time.
Under the National Member Forum Terms of Reference which were approved by our Board, there is a requirement that the Member Forum meets every two months during the initial set-up phase. Once the Member Forum is up and running, and enshrined in our Constitution, the requirement reduces to meetings every 3-4 months.
Once established, the Forum's voting members can propose changes to its operations and structure, including in relation to how often the Forum should meet.
There is currently no restriction preventing branch officers or peer supporters from also serving as branch representatives on the Member Forum.
The Member Forum Terms of Reference (which governs how the Forum will operate) does state that a maximum of 14 voting members can hold another formal IKA role (such as Director, Branch Officer or Peer Support Volunteer), however, this rule will only take effect after the Forum is fully established and enshrined into our Constitution following a full member vote. Therefore, there is no barrier to putting yourself forward as a nominee at this time.
Structure & Governance
Not currently. The Forum was established by a resolution of the IKA Board and operates under its authority. To guarantee its long-term stability that is safeguarded beyond the current Board's term, a proposal will be put to the membership to enshrine the Member Forum within our Constitution. This will be presented for a vote at a general meeting, giving you, our members, the ultimate authority to secure its future.
The Forum will be made up of representatives from each of our 25 branches nationwide. One of the requirements to be a representative is that you must have extensive lived experience using kidney disease services in Ireland. This includes kidney patients and family members or carers of kidney patients. However, at least 51% of the Member Forum must be made up of patients (as distinct from family members or carers).
The Member Forum currently operates under the authority of the IKA Board. To guarantee long-term stability that is safeguarded beyond the current Board's term, the Member Forum would need to be included in our Constitution. This will be a decision for members at our next general meeting.
Under our Constitution, the Board is made up of one director from each of our 25 branches. In order to comply with best practice in governance, and to ensure they can continue to lead the IKA effectively, the Board has proposed some changes to this structure. This change will require an amendment to our Constitution, and as such, will need to be approved by you, our members, before any changes occur. We will be sharing further information about the proposed changes to the Board structure in the coming months.
If the Board’s proposed changes are passed by members, the Board will be made up of eleven directors, six of whom will be nominated by the voting members of the National Member Forum, ensuring representation from across the country. For now, however, we are prioritising building the National Member Forum to ensure patient issues from around the country are championed.
GET IN TOUCH, WE'D LOVE TO HEAR FROM YOU!
The National Member Forum is all about you. As we build the Forum, we’d love to hear from you with any questions or suggestions you may have.
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