Insights from the HSE National Partnership Council
TSC Ireland was proud to represent our community at the latest meeting of the HSE National Partnership Council.
The focus of the meeting was central to everything we advocate for: what does planning for meaningful partnership actually look like?
Together, members explored how patient and service user perspectives can help shape not just individual services, but the broader priorities, policies, and decisions that guide how health and social care are planned across Ireland.
One core principle stood out above all else: partnership is more than simply having people sitting at the table.
Our Three Key Takeaways on Meaningful Partnership
Participation Needs to Be Meaningful: True partnership means peoples lived experience and knowledge must actively inform and influence health decisions, rather than serving as token representation.
Solutions Must Look Beyond Health & Social Care: A person’s health is deeply connected to their broader circumstances, including housing, employment, education, and transport. Improving quality of life for families requires joined-up working across multiple sectors and government agencies.
Population Data Meets Lived Experience: Combining robust health data with real-world patient stories ensures care is directed where the need is greatest, showing where services are working well and where care can be delivered differently.
Key Developments & What’s Next
Alongside these vital discussions, the Council progressed several key initiatives to embed patient voices into the future of Irish healthcare:
Evolving Governance: The Council adopted its revised Terms of Reference and agreed to continue co-designing its ongoing governance structures.
National Strategy & Conference: Members prepared for the upcoming HSE Patient and Public Partnership Conference on 15th October, and established a working group to shape the governance of the forthcoming HSE National Partnership Strategy.
Education & Capability: Updates were shared on the HSE Partnership Scholarship Programme which supports patients and service users in undertaking training in participatory health research as well as new learning modules available through the HSE Partnership Hub.
Bringing the TSC Voice to Health Policy
The ambition of the HSE National Partnership Council is clear: to make partnership with people a normal, everyday part of how health and social care is planned, designed, and delivered.
At TSC Ireland, we will continue to ensure that the real-world experiences of individuals and families living with Tuberous Sclerosis Complex remain at the centre of these national conversations.
