Politician(s) lobbied: Eoin Hayes (TD), Dáil Éireann, the Oireachtas
Intent: Increase awareness of the need for an integrated care pathway for Huntington's disease to ensure earlier intervention and access to available social protection for families impacted
Methods: Meeting
Details by Method
Method not specified
To raise awareness of the socio-economic impact of Huntington's disease and highlight the need for a coordinated specialist multi-disciplinary service and dedicated integrated care pathway for families impacted by Huntington's disease.
Politician(s) lobbied: Jennifer Carroll MacNeill (Minister), Department of Health; Martin Daly (TD), Dáil Éireann, the Oireachtas; Hildegarde Naughton (Minister of State), Department of Children, Equality, Disability, Integration and Youth
Intent: To highlight the complex nature of Huntington’s disease (HD) and the persistent impact it has on families over generations in order to gain political support for a national HD specialist mutli-disciplinary service with coordinated care, outreach and a dedicated care pathway.
Methods: MeetingEmail
Details by Method
Method not specified
To highlight the need for a coordinated specialist multi-disciplinary service and dedicated integrated care pathway for families impacted by Huntington's disease.
Politician(s) lobbied: Unknown
Intent: Unknown
Methods: Unknown
Details by Method
Method not specified
Unknown
Politician(s) lobbied: Unknown
Intent: Unknown
Methods: Unknown
Details by Method
Method not specified
Unknown
Politician(s) lobbied: Unknown
Intent: To highlight the complex nature of Huntington’s disease (HD) and the persistent impact it has on families over generations in order to gain political support for a national HD specialist mutli-disciplinary service with coordinated care , outreach and a dedicated care pathway.
Methods: Unknown
Details by Method
Method not specified
To highlight the need for a coordinated specialist multi-disciplinary service and dedicated integrated care pathway for families impacted by Huntington's disease.
Politician(s) lobbied: Anne Rabbitte (Minister), Department of Children, Equality, Disability, Integration and Youth
Intent: To secure an Advanced Nurse Practitioner post for Huntington’s Disease at University Hospital Galway
Methods: Email
Details by Method
Method not specified
To advocate for the recruitment of an Advanced Nurse Practitioner candidate for Huntington’s Disease at University Hospital Galway.
Politician(s) lobbied: Unknown
Intent: Unknown
Methods: Unknown
Details by Method
Method not specified
Unknown
Politician(s) lobbied: Anne Rabbitte (Minister of State), Department of Children, Equality, Disability, Integration and Youth
Intent: To secure support for the development of a coordinated specialist service for families affected by Huntington's Disease by continuing to highlight the complexity of this disease, the generational impact, the lack of appropriate coordinated services and the barriers preventing access to existing health and social care services
Methods: Meeting
Details by Method
Method not specified
To advocate for a coordinated specialist service for families affected by Huntington’s Disease. Specifically to seek support for a Huntington's Disease out-reach demonstrator project.
Politician(s) lobbied: Mary Butler (Minister of State), Department of Health; Anne Rabbitte (Minister of State), Department of Children, Equality, Disability, Integration and Youth; John Lahart (TD), Dáil Éireann, the Oireachtas; James Lawless (TD), Dáil Éireann, the Oireachtas; Michael Moynihan (TD), Dáil Éireann, the Oireachtas; Jim O'Callaghan (TD), Dáil Éireann, the Oireachtas; Darragh O'Brien (Minister), Department of Housing, Local Government and Heritage; Cathal Crowe (TD), Dáil Éireann, the Oireachtas; Seán Ó Fearghaíl (TD), Dáil Éireann, the Oireachtas; Brendan Smith (TD), Dáil Éireann, the Oireachtas; Thomas Byrne (TD), Dáil Éireann, the Oireachtas; Jackie Cahill (TD), Dáil Éireann, the Oireachtas
Intent: To secure support for the development of a coordinated specialist service for families affected by Huntington's Disease by continuing to highlight the complexity of this disease, the generational impact, the lack of appropriate coordinated services and the barriers preventing access to existing health services
Methods: EmailLetter
Details by Method
Method not specified
To advocate for a coordinated specialist service for families affected by Huntington’s Disease. Specifically to seek support for a Huntington's Disease out-reach demonstrator project.
Politician(s) lobbied: Mary Butler (Minister of State), Department of Health; Corona Joyce (Special Adviser), Department of Health
Intent: To secure support for the development of a coordinated specialist service for families affected by Huntington's Disease by highlighting the complexity of this disease, the generational impact, the lack of appropriate coordinated services and the barriers preventing access to existing health services
Methods: Meeting
Details by Method
Method not specified
To advocate for a coordinated specialist service for families affected by Huntington’s Disease.
