Huntington's Disease Association of Ireland
Mass communications
Lobbying activity
The following activities occurred for this specific Subject Matter Area.
Letter (1)
Sent a letter to request a meeting with Minister for Health Jennifer Carroll McNeill to discuss the resourcing of a Huntington’s disease Care Pathway
Phone call (2-5)
Phone call with Minister Cummins and Deputy John Connolly following contact from family members in their constituency who asked for their support. Discussed the inadequate care for families and highlighted the need for a HD Care Pathway to be resourced and implemented to avoid mis-diagnosis, delayed diagnosis, lack of access to care, misunderstanding of the disease, negative impact on family relationships, generational impact, lack of support for people at risk etc.
Virtual Meeting (1)
HDAI met with Dr Colm Henry, Chief Clinical Officer, HSE to discuss the profound impact of Huntington’s disease on the person living with the disease and on the entire family. Highlighted the need for the HD Care Pathway, submitted by the Clinical Care Programme for Neurology to the HSE, to be approved, resourced and implemented urgently to avoid mis-diagnosis, delayed diagnosis, lack of access to care, misunderstanding of the disease and to provide a more cost effective HSE service
Email (1)
An email was sent to ALL TDs and to Senators on health or disability committees to ask for their support for the Huntington's disease care pathway to be resourced and implemented across Ireland without further delay.
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.