Irish Lung Fibrosis Association

Lobbying Organisation Irish Lung Fibrosis Association

Date published 20 Sep, 2017

Relevant Matter Public policy or programme

Public Policy Area Local Government

Period 1 May, 2017 to 31 Aug, 2017

Specific Details ILFA meeting with Minister Finian McGrath on 17 May at Leinster House

Intended results To highlight and discuss unmet health needs of IPF patients, concerns about closed beds and the staff resources at the National Heart and Lung Transplant Unit at the Mater Misericordiae University Hospital, the introduction of a soft opt-out organ donation system. To bring issues discussed to the attention of Minister Simon Harris.

Name of person primarily responsible for lobbying on this activity Liam Galvin, Nicola Cassidy and Gemma O'Dowd.

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

Mass communications

Letter All Oireachtas Members

Letter All Local Authority Members

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Email (6-10)

These emails were related to arranging a date and time to meet with Minister Finian McGrath via his secretaries and himself.

Meeting (1)

ILFA met with MInister Finian McGrath on 17 May to discuss the unmet health needs of IPF patients. In particular, we would like to raise our urgent concerns about lung transplantation services at the National Heart and Lung Transplant Unit at the Mater Misericordiae University Hospital.

Letter (1)

Following ILFA's attendance at the ODTI launch of their new offices that Minister Harris was also in attendance, over the course of conversations the Minister invited ILFA to meet with him at Leinster House to discuss the introduction of a soft-opt out organ donation system to increase the number of potential organ donors and life saving transplant operations that can be carried out, needs to be prioritised.

Email (6-10)

Minister Harris invited ILFA to meet him in September 2017 and several emails passed between ILFA and the Minister office to arrange and agree a date, time, location for the meeting and to confirm the proposed agenda and ILFA participants list.

Letter (100+)

In July 2017, ILFA wrote to all sitting TD's in Ireland looking for their support on a Call to Action to support a soft-opt out organ donation system 2017.

Designated public officials lobbied

There were no DPOs directly lobbied during this return period on this specific Subject Matter Area.