Politician(s) lobbied: John Lahart (TD), Dáil Éireann, the Oireachtas; Catherine Callaghan (TD), Dáil Éireann, the Oireachtas
Intent: Lobbying for patients living with a life limiting disease (in Ireland) 'pulmonary fibrosis' and the unmet needs of those patients including patient priorities, funding and transplants
Methods: Meeting
Details by Method
Meeting
Meeting with Catherine Callaghan on patient priorities, funding and transplants
Meeting
Meeting with John Lahart on patient priorities, funding and transplants
Politician(s) lobbied: Catherine Callaghan (TD), Dáil Éireann, the Oireachtas; Evanne Ní Chuilinn (Senator), Seanad; Garret Kelleher (Senator), Seanad; Manus Boyle (Senator), Seanad; Pádraig Rice (TD), Dáil Éireann, the Oireachtas; Michael Cahill (TD), Dáil Éireann, the Oireachtas; Jerry Buttimer (Senator), Seanad; John Paul O'Shea (TD), Dáil Éireann, the Oireachtas; Duncan Smith (TD), Dáil Éireann, the Oireachtas; Joe Neville (TD), Dáil Éireann, the Oireachtas; Seán Crowe (TD), Dáil Éireann, the Oireachtas; Edward Timmins (TD), Dáil Éireann, the Oireachtas; Tony McCormack (TD), Dáil Éireann, the Oireachtas; Michael Murphy (TD), Dáil Éireann, the Oireachtas; Noel McCarthy (TD), Dáil Éireann, the Oireachtas
Intent: Creating awareness to members of The House of the Oireachtas and Minister for Health of the need for the need for funding for those living with pulmonary fibrosis in Ireland, and the unmet needs of those patients and the challenges they face living with a life limiting condition, the cost of running oxygen at home and rising energy costs.
Methods: Event / Reception
Details by Method
Event / Reception
Hosted a joint event with the ITS, COPD Ireland, Alpha-1 and the Asthma Society for World Lung Day in Buswells, 23-27, Molesworth St, Dublin 2 to raise awareness on lung health and the implications of lung disease.
Politician(s) lobbied: Duncan Smith (TD), Dáil Éireann, the Oireachtas; Ivana Bacik (TD), Dáil Éireann, the Oireachtas; Robbie Gallagher (Senator), Seanad; Paul McAuliffe (TD), Dáil Éireann, the Oireachtas; Alan Kelly (TD), Dáil Éireann, the Oireachtas; Shane Moynihan (TD), Dáil Éireann, the Oireachtas; Ryan O'Meara (TD), Dáil Éireann, the Oireachtas; Mattie McGrath (TD), Dáil Éireann, the Oireachtas; Niall Blaney (Senator), Seanad; Imelda Goldsboro (Senator), Seanad; Shane Curley (Senator), Seanad; Eoin Ó Broin (TD), Dáil Éireann, the Oireachtas; Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; Brendan Smith (TD), Dáil Éireann, the Oireachtas; Teresa Costello (Senator), Seanad; David Cullinane (TD), Dáil Éireann, the Oireachtas; John Lahart (TD), Dáil Éireann, the Oireachtas; Jennifer Murnane O'Connor (TD), Dáil Éireann, the Oireachtas; Danny Healy-Rae (TD), Dáil Éireann, the Oireachtas; Timmy Dooley (Minister of State), Department of Agriculture, Food and the Marine; Anne Rabbitte (Senator), Seanad; Aidan Davitt (Senator), Seanad; Pat the Cope Gallagher (TD), Dáil Éireann, the Oireachtas; Martin Daly (TD), Dáil Éireann, the Oireachtas; Brian Brennan (TD), Dáil Éireann, the Oireachtas; Michael Cahill (TD), Dáil Éireann, the Oireachtas; Cathal Crowe (TD), Dáil Éireann, the Oireachtas; Maria Byrne (Senator), Seanad; Tom Clonan (Senator), Seanad; Pádraig Rice (TD), Dáil Éireann, the Oireachtas; Marie Sherlock (TD), Dáil Éireann, the Oireachtas
Intent: To secure a meeting with the Health Committee and Minister O'Neill for the request for a clinical care programme for patients living with pulmonary fibrosis in Ireland and to highlight unmet needs of those patients..
Methods: Meeting
Details by Method
Meeting
Meeting took place in Leinster House AV Room for launch of prospectus report for ILFA. This was supported by John Lahart
Politician(s) lobbied: David Cullinane (TD), Dáil Éireann, the Oireachtas; John Lahart (TD), Dáil Éireann, the Oireachtas; Seán Kyne (Senator), Seanad; Catherine Callaghan (TD), Dáil Éireann, the Oireachtas
Intent: 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.
Methods: MeetingEmail
Details by Method
Meeting
Meeting at Leinster House with David Cullinane on the 5th March ILFA priorities with respect to budget 2025, oxygen, disease management affordability and clinical care programme
Meeting
Met Catherine Callaghan at Leinster House to discuss her support of lung fibrosis broadly and getting a meeting with Minister
Meeting
Met Sean Kyne on the 2nd April at Leinster House to explain about a delay in receipt of funding and to request a meeting with the minister of health.
Email
PQs and follow up from meeting
Politician(s) lobbied: Stephen Donnelly (Minister), Department of Health; John Lahart (TD), Dáil Éireann, the Oireachtas
Intent: Secure government funding to support patients living with pulmonary fibrosis in Ireland
Methods: EmailPhone callLetter
Details by Method
Email
Email to John Lahart re parliamentary question regarding 2025 budget
Email
Email to Stephen Donnelly and John Lahart - following on the Section 39 refusal by the HSE
Email
Email to Stephen Donnelly and John Lahart regarding public funding
Email
Email to Stephen Donnelly and John Lahart regarding tax rebate
Email
Email to Stephen Donnelly and John Lahart thanking them for their support and requesting a meeting with Stephen Donnelly in response to the parliamentary question
Phone call
Phone calls to John Lahart regarding 2025 budget
Letter
Postage of ILFA Winter newsletter to Stephen Donnelly, John Lahart
Politician(s) lobbied: Stephen Donnelly (Minister), Department of Health; Cathal Crowe (TD), Dáil Éireann, the Oireachtas; David Cullinane (TD), Dáil Éireann, the Oireachtas; Duncan Smith (TD), Dáil Éireann, the Oireachtas; Miriam Murphy (Councillor), Wicklow County Council; Jack Chambers (Minister of State), Department of Tourism, Culture, Arts, Gaeltacht, Sport and Media; Susan Mitchell (Special Adviser), Department of Health; Micheál Martin (Taoiseach), Dáil Éireann, the Oireachtas; Seán Crowe (TD), Dáil Éireann, the Oireachtas; Bernard Durkan (TD), Dáil Éireann, the Oireachtas; Neasa Hourigan (TD), Dáil Éireann, the Oireachtas; Gino Kenny (TD), Dáil Éireann, the Oireachtas; Róisín Shortall (TD), Dáil Éireann, the Oireachtas; Lorraine Clifford-Lee (Senator), Seanad; Annie Hoey (Senator), Seanad; Seán Kyne (Senator), Seanad; Frances Black (Senator), Seanad; Martin Conway (Senator), Seanad
Intent: A National Clinical Care programme and support for pulmonary fibrosis patients around the need for inclusion in the national rehabilitation programme and consideration and support for the running of oxygen at home, reimbursement by the HSE for payment of oxygen and the rising costs of energy.
Methods: EmailLetter
Details by Method
Email
Correspondence to Timothy O'Byrne regarding ILFA's testimony before the committee.
Email
Duncan Smith, Peter Harper, Steven Evans, Miriam Murphy, Eamon Murphy, Siobhan Russell, David Cullinane and Jordan Cole re Manifesto submission
Email
Email to Susan Mitchell (secretary to Minister Donnelly) and David Cullinane requesting a meeting with Minister Donnelly re ILFA priorities
Letter
ILFA Support Group leader in Cork, Anne Casey wrote a letter to Micheál Martin requesting a meeting to highlight ILFA's priorities
Email
John Lahart email for support in requesting a meeting with Minister Stephen Donnelly
Email
Request for update on oxygen contracts in Ireland
Email
Thank you to Cathal Crowe for submitting a parliamentary question on behalf of ILFA
Letter
Thank you to the Chair Sean Crowe for raising ILFA's issues at the HSE testimony before the committee
Email
Wrote to Jack Chambers and Minister Stephen Donnelly re pre-budget submission
Politician(s) lobbied: 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 Shortall (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
Intent: 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 Cro
Methods: MeetingLetterPhone callEmail
Details by Method
Meeting
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,
Letter
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.
Phone call
JP O'Sullivan had a phone call with Minister Norma Foley to inform her of ILFA's intention to meet the JOC.
Email
MDM sent an email to JL on 13//03/24 re patients unmet needs and need for a clinical care programme.
Email
MOD sent an email to the JOC on 7th May 2024 regarding oxygen provision for our patients.
Meeting
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/
Email
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
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
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.
Email
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.
Politician(s) lobbied: Colm Burke (TD), Dáil Éireann, the Oireachtas; Micheál Martin (Taoiseach), Dáil Éireann, the Oireachtas; Cathal Crowe (TD), Dáil Éireann, the Oireachtas; Seán Crowe (TD), Dáil Éireann, the Oireachtas; Norma Foley (Minister), Department of Education; Brendán Fitzgerald (Councillor), Kerry County Council; Richard Bruton (TD), Dáil Éireann, the Oireachtas; Joe O'Brien (TD), Dáil Éireann, the Oireachtas; Michael Lowry (TD), Dáil Éireann, the Oireachtas; Pa Daly (TD), Dáil Éireann, the Oireachtas; Niall Collins (TD), Dáil Éireann, the Oireachtas; Donnchadh Ó Laoghaire (TD), Dáil Éireann, the Oireachtas; Simon Coveney (TD), Dáil Éireann, the Oireachtas; Michael J. McGrath (Assistant Secretary), Department of Finance; Ronan McMahon (Councillor), South Dublin County Council; Darragh O'Brien (TD), Dáil Éireann, the Oireachtas
Intent: To secure a meeting with the Oireachtas Health Committee for the request for a clinical care programme for patients living with pulmonary fibrosis in Ireland and to highlight unmet needs of those patients..
Methods: EmailLetterMeetingPhone call
Details by Method
Email
Email were sent to: Simon CoveneyMicheal MartinMichael McGrathDonnchadh Ó LaoghaireColm BurkeSean CroweRichard BrutonNorma FoleyMichael Lowrey Joe O'BrienNiall CollinsNorma Foley
Letter
Letters were sent to:Sean Crowe
Meeting
Meetings took place with:Colm BurkeCathal CroweBrendan FitzgeraldRichard BrutonDaragh O'BrienJoe O'Brien
Phone call
Phone calls were made to:Colm BurkeMichael LowryRonan McMahonDaragh O'BrienPa Daly
Politician(s) lobbied: Michael Lowry (TD), Dáil Éireann, the Oireachtas; Seán Crowe (TD), Dáil Éireann, the Oireachtas; Bernard Durkan (TD), Dáil Éireann, the Oireachtas; Colm Burke (TD), Dáil Éireann, the Oireachtas; David Cullinane (TD), Dáil Éireann, the Oireachtas; Neasa Hourigan (TD), Dáil Éireann, the Oireachtas; Gino Kenny (TD), Dáil Éireann, the Oireachtas; John Lahart (TD), Dáil Éireann, the Oireachtas; Róisín Shortall (TD), Dáil Éireann, the Oireachtas; Frances Black (Senator), Seanad; Lorraine Clifford-Lee (Senator), Seanad; Martin Conway (Senator), Seanad; Annie Hoey (Senator), Seanad; Seán Kyne (Senator), Seanad; Cathal Crowe (TD), Dáil Éireann, the Oireachtas
Intent: Department for Health and HSE to work towards a clinical care programme for pulmonary fibrosis patients living in Ireland to ensure their healthcare needs are recognised and addressed. The difficulties and inequalities in healthcare that arise for lung fibrosis patients would be resolved by having a dedicated Clinical Care Programme and those patients.
Methods: MeetingPhone callEmailLetter
Details by Method
Meeting
An ILFA member met with a member of the Oireachtas Health Committee to highlight the need for a clinical care programme for pulmonary fibrosis patients in Ireland
Phone call
Email from Kathleen O'Meara, Public Affairs Adviser on behalf of ILFA to Michael Lowrey in relation to a Parliamentary Question regarding a clinical care programme patient living with pulmonary fibrosis in Ireland and their vital healthcare needs, and access to specialist and multidisciplinary healthcare services for lung fibrosis is poor.
Email
Email from Kathleen O'Meara, Public Affairs Consultant on behalf of ILFA to Michael Lowrey in relation to a clinical care programme patient living with pulmonary fibrosis in Ireland and their vital healthcare needs, and access to specialist and multidisciplinary healthcare services for lung fibrosis is poor.
Letter
ILFA as a member of the Irish Donor Network wrote to the Oireachtas Committee for Health to receive an update on developments in relation to the Human Tissue Bill - June 2023
Letter
Letter delivered to Deputy Seán Crowe, Chair Oireachtas Health Committee
Politician(s) lobbied: Brendan Smith (TD), Dáil Éireann, the Oireachtas; Norma Foley (Minister), Department of Education; Stephen Donnelly (Minister), Department of Health; Simon Harris (Minister), Department of Justice
Intent: Communication of information and news around the work of ILFA and updates for members on pulmonary fibrosis in Ireland
Methods: Letter
Details by Method
Letter
ILFA produces 3-4 newsletters throughout the year and circulates them by post to some members of the Oireachtas and Ministers at Leinster House for information.
