Rare Diseases Ireland
Intent: Reimbursement of Friedriech's ataxia drug Skyclarys
Details: Letter to HSE leadership re reimbursement of Skyclarys for people living with Freidriech's ataxia
No current committee memberships matched for this official.
Intent: Reimbursement of Friedriech's ataxia drug Skyclarys
Details: Letter to HSE leadership re reimbursement of Skyclarys for people living with Freidriech's ataxia
Intent: Requesting intervention on the cancellation of the HSE Home Support Authorisation Scheme Round 3
Details: HSE Home Support Authorisation Scheme
Intent: Data packs provided at ED Taskforce meetings - seeking HSE National HR to provide a breakdown of the locations as set out in the report. The report records 8,057 patients in surge locations for the first 15 days of January and 10,965 for the month of December, and it would be helpful if the locations by hospital could be forwarded.
Details: ED Taskforce Data Pack
Intent: Share the impact of fuel protests on home care workers ability to access fuel and attend home care visits in areas with traffic obstructions.::Ensure home care workers were paid for home care visits that were cancelled due to fuel protest related issues.
Details: Response to April 2026 Fuel Protests
Intent: Invite Donegal TDs to HCCI member event. ::Share HCCI publication on HSE commissioning reform ::Highlight issues accessing HSE data ::Inform Oireachtas Health Committee's work programme ::Request for mileage payments to be paid as part of the HSE Home Support Authorisation Scheme
Details: Advocacy for Older Persons Home Care Issues
Intent: For NHI and the new RHA's to work in a cohesive nature ensuring integration of the nursing home sector and the vital role of nursing home care in the community. HSE to brief NHI on new RHA internal structures and management roles that were due to be in situ in early March.
Details: NHI met with Grace Rothwell and Access and Integration Officials to discuss the new Regional Health Areas and their management structure.
Intent: NHI met with Grace Rothwell HSE Access and Integration to discuss the below items;• Discuss future planning & capacity in private nursing homes to support UEC• Regular engagement (agree Q dates)• Integration – national lead on older persons and local IHA’s• Tender/ contract beds (national and/or regional)• NHI – Residents Forum/ Insights Paper/ Placing Human Rights at the Heart of Nursing Home Care
Details: NHI met with Grace Rothwell HSE Access and Integration to discuss a number of important issues (below) but also to keep the HSE fully briefed on the challenges currently facing the nursing home sector and the current situation on the ground with focus on integration of the nursing home sector
Intent: Letter to Grace Rothwell Chief Operations Officers seeking that REOs set out at the ED taskforce, the additional specific measures to make additional beds available in our public hospitals to accommodate influenza patients in appropriately isolated facilities over the next 6 - 8 weeks.
Details: Chief Clinical Officer sent a Memo re influenza projections - A letter was issued to Grace Rothwell Chief Operations Officer and Co-Chair ED Taskforce seeking extra supports
Intent: N/A
Details: N/A
Intent: To outline concerns about the proposed 5% cut to the rate for HSE Paediatric Home Support::To gain clarity on the rate review process for Paediatric Home Support.
Details: Paediatric Home Support Rate Review