Irish Lung Fibrosis Association

Lobbying Organisation Irish Lung Fibrosis Association

Date published 20 May, 2024

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Jan, 2024 to 30 Apr, 2024

Specific Details Lobbying for a clinical care programme for patients living with a life limiting disease (in Ireland) 'pulmonary fibrosis' and the unmet needs of those patients.

Intended results The ILFA want to create awareness for the need for a dedicated Clinical Care Programme for our patients living with pulmonary fibrosis in Ireland, their unmet needs, inequality in terms of treatment by the HSE around rehabilitation, the rising cost of energy at home due to their dependence on oxygen to live and oxygen supplier delivery inefficiencies. We requested a meeting the the Minister for Health, Stephen Donnelly and a meeting with the Joint Oireachtas Committee on Health (JOC). To get a meeting with Minister Stephen Donnelly and the Joint Oireachtas Committee on Health and to create awareness of patients unmet needs in Ireland. ILFA wrote a letter to Minister Donnelly in January 2024 requesting a meeting with ILFA, which was rejected. Nicola Cassidy (NC) met Richard Bruton (RB) TD on his canvassing journey - RB then wrote to the HSE on behalf of ILFA and Anne Horgan responded to RB who forwarded communication to NC. The Irish Thoracic Society (ITS) wrote a letter to Colm Crowe TD, in support of ILFA's request to make a presentation to the members of the JOC, on the need for the establishment of a clinical care. RB posed a parliamentary question on behalf of ILFA - to ask the Minister for Health whether his Department has articulated a policy on the roll-out of pulmonary rehabilitation for those patients suffering with lung fibrosis; and if he will make a statement on the matter? NC and RB-TD corresponded via email on 22nd January, 12th February and 29th February regarding parliamentary questions, and on 8th April to inform him of ILFA's presence at Leinster House 2000. NC wrote a letter to Minister Stephen Donnelly seeking a meeting. Minister's office replied with refusal to meet ILFA. NC emailed Colm Burke TD on 27th January and 28th March with an update from ILFA and on 8th April to inform him of ILFA's intention to attend Leinster House 2000 on 10th April to meet members of Leinster House informally. JP O'Sullivan (ILFA member & patient) had a phone call with Minister for Education Norma Foley to make her aware of ILFA's call for a clinical care programme for our patients and request for a meeting with the JOC. Rob Hurley (RH) spoke to Cathal Crowe (CC) TD to discuss ILFA meeting with the JOC. RH met CC on Tues 19/03/24 to discuss a meeting with the JOC, CC wrote a letter to RH on 28/03/24 agreeing to meet ILFA in Leinster House 2000 on 10 April. RH called Niall Collins (NC) TD and Senator Martin Conway (MC)-TD to discuss ILFA's request for a meeting with the JOC and Minister for Health to address unmet needs of our patients. Eddie Cassidy (EC) and Matt Cullen (MC) ILFA representatives, contacted Darragh O'Brien (DOB) for a meeting to discuss the need for a dedicated clinical care programme for patients living with pulmonary fibrosis in Ireland and their unmet needs. DB wrote to HSE on behalf of ILFA and Anne Horgan HSE, responded to DOB who forwarded communication to MC. Lorcan McMahon spoke to his brother Counsellor Ronan McMahon, who contacted Sean Crowe (SC) about ILFA's call for a dedicated clinical care programme and meeting with the JOC. Michael Darragh Macauley (MDM) sent an email to John Lahart (JL) on 13//03/24 re ILFA's unmet needs of our patients as well as the need for a clinical care programme, ILFA's request to meet the JOC, and ILFA meeting in Leinster House 2000, JL confirmed to MDM (by letter) on 28/03/24 that he would meet ILFA on 10 April in Leinster House 2000. MOD ILFA CEO, NC ILFA Director, and MDM ILFA representative, attended Leinster House 2000 on 10th April 2024 to informally meet with members of Leinster House to inform them of the need for a dedicated clinical care programme and the unmet needs of our patients living with pulmonary fibrosis in Ireland. T MOD, NC and MDM met the following informally on 10th April 2024 at Leinster House 2000 and met the following: Pa Daly TD/Mary Lou MacDonald TD/Colm Burke TD/Cathal Crowe TD/Richard Bruton TD/Gary Gannon TD/Roisin Shortall TD/John Lahart TD/Senator Victor Boyhan/David Cullinane TD/Senator Malcom Byrne/Chris Andrews TD/Leo Varadkar TD/Sean Crowe TD/Paul Donnelly TD/Ruairi O’Murchú TD/Thomas Gould TD/ Mattie McGrath TD/ Micheál Martin TD/Senator Marie Sherlock/ MOD sent an email to the JOC on 7th May 2024 regarding oxygen provision for our patients.

Name of person primarily responsible for lobbying on this activity Maureen O'Donnell, ILFA CEO

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.

Letter (2-5)

ILFA wrote to Minister Stephen Donnelly requesting a meeting. The ITS wrote to Colm Crowe TD, in support of ILFA's request to make a presentation to the members of the JOC, on the need for the establishment of a clinical care.

Email (2-5)

NC and RB-TD corresponded via email on 22nd January, 12th February and 29th February regarding parliamentary questions, and on 8th April re ILFA's presence at Leinster House 2000.

Email (1)

MDM sent an email to JL on 13//03/24 re patients unmet needs and need for a clinical care programme.

Email (1)

MOD sent an email to the JOC on 7th May 2024 regarding oxygen provision for our patients.

Email (1)

NC emailed Colm Burke TD on 27th January and 28th March with an update from ILFA and on 8th April to inform him of ILFA's intention to attend Leinster House 2000 on 10th April.

Meeting (1)

MOD, NC and MDM met the following informally on 10th April 2024 at Leinster House 2000 and met the following: Pa Daly TD/Mary Lou MacDonald TD/Colm Burke TD/Cathal Crowe TD/Richard Bruton TD/Gary Gannon TD/Roisin Shortall TD/John Lahart TD/Senator Victor Boyhan/David Cullinane TD/Senator Malcom Byrne/Chris Andrews TD/Leo Varadkar TD/Sean Crowe TD/Paul Donnelly TD/Ruairi O’Murchú TD/Thomas Gould TD/ Mattie McGrath TD/ Micheál Martin TD/Senator Marie Sherlock/

Meeting (1)

EC and MC ILFA representatives, met with Darragh O'Brien (DOB) to discuss the need for a dedicated clinical care programme for patients living with pulmonary fibrosis in Ireland and their unmet needs. DB wrote to HSE on behalf of ILFA,

Phone call (1)

JP O'Sullivan had a phone call with Minister Norma Foley to inform her of ILFA's intention to meet the JOC.

Email (2-5)

NC and RB TD corresponded via email on 22nd January, 12th February and 29th February March regarding parliamentary questions, and on 8th April to inform him of ILFA's presence at Leinster House 2000

Email (2-5)

NC emailed Colm Burke (CB) TD on 27th January, 28th March with an update from ILFA and again on 8th April to inform him of ILFA's presence at Leinster House 2000 on 10th April.

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 TD (Dáil Éireann, the Oireachtas)

Cathal Crowe TD (Dáil Éireann, the Oireachtas)

Mary Lou McDonald TD (Dáil Éireann, the Oireachtas)

Richard Bruton TD (Dáil Éireann, the Oireachtas)

Róisín Shorthall TD (Dáil Éireann, the Oireachtas)

Gary Gannon TD (Dáil Éireann, the Oireachtas)

Victor Boyhan Senator (Seanad)

David Cullinane TD (Dáil Éireann, the Oireachtas)

Malcolm Byrne Senator (Seanad)

Chris Andrews TD (Dáil Éireann, the Oireachtas)

Leo Varadkar TD (Dáil Éireann, the Oireachtas)

Seán Crowe TD (Dáil Éireann, the Oireachtas)

Paul Donnelly TD (Dáil Éireann, the Oireachtas)

Ruairí Ó Murchú TD (Dáil Éireann, the Oireachtas)

Thomas Gould TD (Dáil Éireann, the Oireachtas)

Mattie McGrath TD (Dáil Éireann, the Oireachtas)

Micheál Martin Taoiseach (Dáil Éireann, the Oireachtas)

Marie Sherlock Senator (Seanad)

Norma Foley TD (Dáil Éireann, the Oireachtas)

Martin Conway Senator (Seanad)

Bernard Durkan TD (Dáil Éireann, the Oireachtas)

Neasa Hourigan TD (Dáil Éireann, the Oireachtas)

Gino Kenny TD (Dáil Éireann, the Oireachtas)

Frances Black Senator (Seanad)

Lorraine Clifford-Lee Senator (Seanad)

Annie Hoey Senator (Seanad)

Seán Kyne Senator (Seanad)

Stephen Donnelly TD (Dáil Éireann, the Oireachtas)

Stephen Donnelly Minister (Department of Health)

Pa Daly TD (Dáil Éireann, the Oireachtas)

Ronan McMahon Councillor (South Dublin County Council)

Darragh O'Brien Minister (Department of Housing, Local Government and Heritage)

Darragh O'Brien TD (Dáil Éireann, the Oireachtas)