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
Meeting
To highlight the social protection issues impacting families over generations and discuss the need for a dedicated care pathway to ensure access to available social protection supports for families affected 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
Meeting
Meeting with Deputy Martin Daly to highlight the need for a coordinated specialist multi-disciplinary service and dedicated integrated care pathway for families impacted by Huntington's disease.
Meeting
Meeting with Minister for Health Jennifer Carroll McNeill to request her support for the National Clinical Care Programme for Neurology interim funding application for specialist posts for Huntington’s disease
Email
To ask the Minister of State for Equality Hildegarde Naughton for her assistance to ensure people living with complex neurodegenerative conditions, who self neglect as a result of their disease, are included in Pillar 4, Commitment 15 of National Human Rights Strategy for Disabled People .
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
Email
To request the recruitment, without further delay, 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
Meeting
HDAI met with Minister Rabbitte and officials from the Department of Health and the HSE to highlight the need for a specialist coordinated service for Huntington's disease. HDAI discussed the impact on families over generations and the perceived stigma and discrimination endured. In particular families need access to a responsive outreach service.
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
Email
HDAI sent an email to TDs, with whom we have previously corresponded, to share a business plan for a proposed outreach specialist Huntington's Disease service and to ask them to contact Minister Butler and Minister Rabbitte to express their support for this proposed service.
Letter
HDAI wrote to Minister Butler and Minister Rabbitte to share a business plan for a proposed outreach specialist Huntington's Disease service submitted for this year's estimates process and to ask for their support for this 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
Meeting
Held a meeting with Minister Butler and officials from the Department of Health and the HSE to highlight the need for a specialist coordinated service for Huntington's disease. HDAI discussed the impact on families over generations and the perceived stigma and discrimination endured. In particular families need access to responsive Mental Health Services.
