Watch Back on ILFA’s November 2024 Patient Information Day
ILFA’s most recent Patient Information Day video provides a variety of information regarding lung fibrosis that will be of interest to patients and their caregivers.
It includes:
- Colin Edwards – Research Update
- Eimear Bell – Exercise and Breath
- Maureen O’Donnell – Advocacy Update
- Grace O’Sullivan – Palliative Care Myths and Truths
- Sean Connolly – GORD/Reflux
- Frank O’Connor – Patient Story (Frank’s book is for sale here: https://www.orpenpress.com/books/dying-for-a-breath/)
Please note: While most of the session was recorded, the overview of lung fibrosis presented by Dr Andre Pozza of Cork University Hospital was not recorded. For an overview of lung fibrosis, you might wish to watch Killian Hurley’s presentation at ILFA’s patient information day November 2023 https://youtu.be/szT_dESoRC4?si=D9ExwM-s_goisFL7 It begins just after the 2 minute mark.
The Irish Lung Fibrosis Association (ILFA) are holding a hybrid World Café-style workshop with patients, carers, family members, healthcare professionals and industry representatives on Saturday 18th January in Dublin. The event will start in the late morning and last approximately 3 hours.
Our World Café workshop will create a space for participants to share ideas on how ILFA’s four strategic themes (Education, Supports, Advocacy and Research) can best address the needs and priorities of the lung fibrosis community. The information gathered will guide our work over the next few years of our 2022-2027 strategy. As a patient-centred organisation, your voice is critical and we promise a fun and engaging experience where you’ll have a chance to make your voice heard and connect with others in our community.
If you would like to take part in the ILFA World Café, please register your expression of interest by emailing info@ilfa.ie or calling 086 871 5264. Note that after receiving feedback from those interested in attending with a strong preference for virtual we have decided to move the event online.
November 27th 2024
Air Liquide Healthcare – Home Oxygen supply
Communication to ILFA
By way of update to the Irish Lung Fibrosis Association:
Air Liquide is committed to continuously providing a high standard of service to the community and in particular to patients using home oxygen therapy.
Air Liquide has recently purchased large quantities of additional cylinders to cover the increasing demand for gaseous oxygen. The current coverage of Air Liquide for refills is across all geographies in the Republic of Ireland. We understand that the use of oxygen can be seasonal with peaks of demand occurring around holidays, Christmas and long weekends. We work hard to plan for these times and will always do our utmost to ensure you have what you need to enjoy these times.
As part of the new HSE home oxygen contract, Air Liquide is in the process of:
● Installing existing oxygen users currently being serviced by BOC patients in CHOs 1,2,3,7,8,9
● Deinstalling oxygen users in CHOs 4,5,6, who will be looked after by Vivisol as per the new contract
This process is dictated by the HSE where individual prescriptions are sent to either us or Vivisol by prescribers. We estimate that this transition process is approximately 50% complete.
Air Liquide is committed to delivering a high level of service and will work along with the HSE and ILFA to make sure that the utmost attention is given to each patient. In the event our service is not meeting the expected requirements, we would like to remind you that any complaints or concerns can be reported on our website in the contact section: https://ie.healthcare.airliquide.com/contact-us.
As a reminder:
● Refill orders should be requested with a notice of 3 working days for delivery.
● Patients should not use cylinders outside of an ambulatory set up, unless specifically prescribed, i.e. concentrators should be used when inside the house and cylinders when outside of the house.
● Oxygen must not be used in the vicinity of a heat source (gas cooker, gas oven, fireplace, candles).
● For any question, doubt or concern regarding safety with oxygen, contact us.
Please rest assured that if there is any concern we remain available to answer any of your queries at:1800 24 02 02.
Kind regards,
The management team
Air Liquide Healthcare Ireland
delighted to announce two educational bursaries for respiratory nurses and allied healthcare professionals in Ireland to attend the European Respiratory Society’s ‘Interstitial Lung Diseases 2025″ course that will take place in Mainz Germany, from 26-28th March, 2025. Please email info@ilfa.ie for an application form. The closing date for completed entries is 5pm on 9th December 2024.
The next online Patient Information Day from the Irish Lung Fibrosis Association will take place on Thursday 28th November 2024 from 11:00-13:30hrs.In the lead up to the General elections, the Irish Lung Fibrosis Association (ILFA) is asking you to take action for patients with Interstitial Lung Disease (ILD).
Background: The Irish Lung Fibrosis Association (ILFA) has been advocating on behalf of patients with lung fibrosis for more than 20 years. While support from the HSE for patients has improved, there is much more work yet to be done.
Many ILD patients don’t receive adequate healthcare. ILFA, with the support of the Irish Thoracic Society, believes the standard of care must be improved. In July ILFA’s pre-budget submission requested State funding targeted toward the following priorities:
- A tax rebate for patients on oxygen therapy to offset increased utility costs, and a streamlined oxygen reimbursement system.
- A disease registry that would allow the State to better manage patient care.
- Act on the HSE’s 2023 promise to resource a Care Pathway – a critical step in establishing a dedicated ILD Clinical Care Programme.
- Stop excluding patients from community pulmonary rehabilitation programmes. These programmes are currently available only to COPD and asthma patients.
State Funding Granted! In October, ILFA received word that €500,000 had been earmarked for lung fibrosis in Budget 2025. We are delighted to be notified of this historic award, and we are planning discussions with the Department of Health and the HSE to determine how this funding will be applied to best serve patient needs.
While we continue to use our political voice to pressure the HSE, our case is much stronger coming from those directly affected by lung fibrosis. You can help!
When someone comes to your door seeking your vote:
- Talk about your experience with lung fibrosis and whether the health system is working for you.
- Tell them also that even if the health system works for you, it doesn’t work for everyone. For example, 75% of respondents in a 2021 ILFA survey hadn’t been offered the pulmonary rehabilitation they need and deserve.
- Explain that in 2024, ILFA worked with the current government to allocate historic funding for lung fibrosis, but more needs to be done.
- Make it clear to them that Ireland needs a Lung Fibrosis Clinical Programme and ask them if they are elected, will they work with ILFA to make that happen?
Are you a patient or family member of someone living with Interstitial Lung Disease or pulmonary fibrosis? Join us for this exciting event!
When: Friday 28th November, 2024 10:00 am -3:00 pm
Where: The Pavilion, University of Limerick
Tea, coffee and lunch will be provided.
The event is free – register at: https://www.eventbrite.ie/e/build-buddies-in-interstitial-lung-disease-university-of-limerick-tickets-1067245412759
29th October, 2024
For Immediate Release:
Irish Lung Fibrosis Association Welcomes Significant Budget Allocation
The Irish Lung Fibrosis Association (ILFA) is delighted to announce the Association is being allocated a new and significant level of investment in the upcoming HSE Service Plan.
We believe that the funding allocated to lung fibrosis in Budget 2025 will support the development of a disease registry, improve patient access to pulmonary rehabilitation, fund the establishment of the clinical care pathway, and provide necessary technical expertise to improve ILFA’s programmes across our three strategic outcomes:
- Earlier diagnosis and treatment
- High quality equitable medical care
- Affordable disease management
While the funding announced is only for 2025, it lays a clear and solid foundation to build from in our goal of realising a Clinical Care Programme for lung fibrosis patients. This funding allocation is especially significant as it is the first time that dedicated resources have been designated for lung fibrosis.
Maureen O’Donnell, CEO of ILFA said, “We are deeply grateful to the Irish Government for their commitment to lung fibrosis patients. When in September, at Deputy Lahart’s request, Minister Donnelly agreed to meet with our delegation and consider our budget requests, I didn’t know we would achieve this result. Our job now is to ensure that our patients see the full benefit of this investment.”
“For more than 20 years, without public funding, ILFA have supported lung fibrosis patients and their families through the most difficult journey of their lives. The funding allocated in budget 2025 should be used to provide patients with desperately needed services and supports and we will work to ensure that it does. We look forward to engaging with the Minister and members of the Department of Health and the HSE soon to agree the best use of the funding for patients.”
On 22nd October, Minister Stephen Donnelly provided the following response to a parliamentary question lodged by Deputy John Lahart: “As part of Budget 2025, I was delighted to be able to provide funding of €0.5m for lung fibrosis. Officials in my Department are currently liaising with the HSE on how this funding can be best utilised to provide supports and services to lung fibrosis patients in Ireland. I have also asked that a meeting be arranged with the Irish Lung Fibrosis Association to gather their views and to ensure that my Department, the HSE, and the Irish Lung Fibrosis Association work collaboratively to ensure this investment provides the most benefit to lung fibrosis patients and their families. “
ENDS
For more information: Maureen O’Donnell, CEO of the Irish Lung Fibrosis Association
In ILFA’s final Let’s Talk session for 2024, All About Medication, Lynn Fox, Advanced Nurse Practitioner with the Mater Misericordiae University Hospital will discuss the primary therapies for lung fibrosis and provide guidance for attendees in managing side effects.
Date: 5th November 2024
Time: 11:00-12:00
Register for this free event here: https://events.teams.microsoft.com/event/f21bbaf5-1634-4237-8a10-03e1460448b5@a269f87c-f8e5-4dd4-9341-aef9beeb799e
