Huntington's Disease Association of Ireland

Lobbying Organisation Huntington's Disease Association of Ireland

Date published 21 May, 2022

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Jan, 2022 to 30 Apr, 2022

Specific Details To highlight the need for a coordinated specialist multi-disciplinary service and dedicated integrated care pathways for families impacted by Huntington's disease.

Intended results 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 and outreach and dedicated care pathways.

Name of person primarily responsible for lobbying on this activity Patricia Towey

Did any Designated Public Official(DPO) or former Designated Public Official(DPO) carry out lobbying activities on your behalf in relation to this return? You must include yourself, and answer Yes, if you are a current DPO or a DPO at any time in the past. (What is a Designated Public Official?) No

Did you manage or direct a grassroots campaign? Yes

What is the directive you gave to the grassroots campaigners? To contact TDs in their constituency to raise awareness of Huntington’s Disease and of the barriers faced in accessing health and social care services. In addition, to ask TDs for their support for the establishment of a working group to investigate the needs of families and develop a plan. Grass roots campaigners were directed to our website which provided an email template to send to TDs

Was this lobbying done on behalf of a client? No

Mass communications

Email All Oireachtas Members Emails were sent to Oireachtas members advising them of the barriers faced by families affected by Huntington's disease in accessing health and social services and asking for their support for the establishment of a working group to determine an appropriate Huntington's specialist service.

Email All Oireachtas Members Emails were sent to Oireachtas members inviting them to attend a HDAI presentation in Leinster House AV room on March 23rd

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Virtual Meeting (1)

Virtually attended a joint meeting with Minister Butler, Minister Rabbitte’s advisors and representatives from Disability and Mental Health , Deputy John Lahart and clinicians working with Huntington's disease in order to highlight the need for a coordinated specialist multi-disciplinary service and dedicated integrated care pathways for families impacted by Huntington's disease.

Event / Reception (1)

HDAI delivered a presentation in Leinster House AV room on Wednesday, March 23rd to highlight the barriers families affected by Huntington’s face when requiring services. We asked Oireachtas members to support our ask for a working group to be established to investigate the needs of people with Huntington’s disease and their families.

Virtual Meeting (2-5)

Virtual meetings were held with three TDs with an interest in health / Huntington's disease to discuss the barriers facing families affected by Huntington's Disease and to ask for their support to develop a specialist service.

Designated public officials lobbied

The following DPOs were lobbied during this return period on this specific Subject Matter Area. These DPOs were involved in at least one of the Lobbying Activities listed above, but not necessarily all of them. As returns are specific to a Subject Matter Area the above Lobbying Activities may be associated with multiple returns.

Anne Rabbitte Minister of State (Department of Children, Equality, Disability, Integration and Youth)

Mary Butler Minister of State (Department of Health)

John Lahart TD (Dáil Éireann, the Oireachtas)

Colm Burke TD (Dáil Éireann, the Oireachtas)

Niamh Smyth TD (Dáil Éireann, the Oireachtas)