DEBRA Ireland

Lobbying Organisation DEBRA Ireland

Date published 20 Sep, 2018

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 May, 2018 to 31 Aug, 2018

Specific Details Campaigning for a more comprehensive and sustainable nursing care system for the EB community.

Intended results To secure a permanent contract for the currently funded EB Outreach nurse. Additional PA hours for patients living with EB Access a streamlined care package for babies born with EB, whether palliative care or long term nursing support is required.

Name of person primarily responsible for lobbying on this activity Fiona Aherne, Advocacy and Policy Manager, DEBRA Ireland.

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? No

Was this lobbying done on behalf of a client? No

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Email (11-20)

To request meetings and forward briefing document on current issues facing families living with EB and care requirements.

Phone call (6-10)

To secure meetings and seek advice regarding care packages and accessibility to HSE.

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.

Colm Burke Senator (Seanad)

Seán Sherlock TD (Dáil Éireann, the Oireachtas)

Charlie Flanagan TD (Dáil Éireann, the Oireachtas)