Irish Lung Fibrosis Association Welcomes Significant Budget Allocation
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
Good nutrition is important for everyone, but for people with pulmonary fibrosis it’s particularly important. Eating a proper diet helps maintain a healthy weight, provides energy, and keeps the immune system working. Being overweight can put extra pressure on the lungs making it harder to breathe. On the other hand, being underweight can lead to a weakening of your breathing muscles. It’s a difficult balance.
In ILFA’s latest Let’s Talk session, Nutrition for People Living with Pulmonary Fibrosis, Sandra Murphy, Clinical Specialist Dietitian in Cystic Fibrosis Ireland & Heart & Lung Transplant Unit of the Mater Hospital will discuss the link between diet and health and provide guidance for attendees in maintaining proper nutrition to support optimal health.
Register for this free event here: https://events.teams.microsoft.com/event/c6aab338-37ca-4996-b6f4-86a223b4be30@a269f87c-f8e5-4dd4-9341-aef9beeb799e
ILFA’s next Patient Information Day will take place online on:
Thursday 28th November 2024 from 11.00am to 1.30pm
Our panel of speakers will be announced shortly but sessions will include information regarding the latest developments in Pulmonary Fibrosis as well as several key updates regarding ILFA’s work on behalf of lung fibrosis patients.
There is no charge for this event. To register, email info@ilfa.ie or click on the following link: https://us06web.zoom.us/webinar/register/WN_bDmWpiNiTlWiwnToescDIg#/registration
For September’s Lung Fibrosis Awareness month, Nicola Cassidy, ILFA Director, wrote an article on the current state of Interstitial Lung Disease in Ireland. Read this informative article here:
Interstitial Lung Disease – An update from the Irish Lung Fibrosis Association
Matt Cullen’s Journey with Lung Fibrosis
For more than 40 years Matt Cullen has exhibited his artwork in galleries across Ireland. They are beautiful works of acrylic, oils, pen and ink drawings and other mediums, inspired by artists like MC Escher and Georges Seurat that reflect his fascination with science. In 2010, while still actively exhibiting his works, he began to experience the hallmark symptoms of lung fibrosis, persistent cough, breathlessness and fatigue.
At first the diagnosis didn’t seem to significantly impact Matt’s life, but in 2013, after a serious chest infection Matt received an even greater blow when he found he wasn’t just facing lung fibrosis, he was also diagnosed with number of other related diseases that increased the severity of his lung fibrosis diagnosis. It was during this difficult time that Matt learned of the Irish Lung Fibrosis Association (ILFA).
Living with lung fibrosis can be very challenging both physically and psychologically. For Matt, being in community with other lung fibrosis patients has been extremely beneficial, especially psychologically. Matt’s active engagement with the local Dublin lung fibrosis support group has proven to be a positive influence in his ability to manage his health issues. ILFA’s Let’s Talk webinar series has also been quite beneficial as has been the HSE’s Stress Management and Chronic Disease Self-Management programmes.
Staying active can also be challenging, particularly because of the breathlessness which is a core symptom of the disease. Despite the challenges, exercise is one of the most important things lung fibrosis patients can do to maintain their physical and mental wellbeing. There are numerous studies which show exercise can significantly improve lung function and cardiopulmonary endurance for patients. It can also help with maintaining weight, improving energy, reducing stress and improving sleep.
For Matt, the key to maintaining his fitness has been walking and in this, he has availed of ILFA’s 2000 Steps A Day Challenge. Matt also regularly participates in thrice weekly exercise classes. Thanks to his active lifestyle, Matt now feels well enough engage in his favourite activities of gardening, volunteering and art.
He also feels well enough to give back. Matt’s passion is helping lung fibrosis patients, and as a member of the European Lung Foundation Pulmonary Fibrosis Patient Advisory Group, Matt helped develop a Patient Supportive Guide which is now available in 17 languages. Matt has also been a tireless advocate for ILFA, leading the Dublin support group, taking part in exercise and yoga videos, and giving discussions on lung fibrosis in Ireland and across Europe. Matt’s ethos of community volunteering was recognised in 2015, when he won the All-Ireland Volunteer of the Year Award in recognition of more than 20 years of dedicated volunteering with Swords Tidy Towns. In 2024 he celebrates fifty years of volunteering.
Matt continues to be strong and positive, actively managing his condition with the support of his medical team. He remains an established artist, but for many years Matt thought he’d never work with oil paint again as he was advised they could cause further lung damage. Fortunately, he heard about a slow drying non-toxic acrylic paint which has allowed him to return to his love of painting. Matt held his first solo art exhibit in 2015 and another one subsequently in 2019, donating 50% of the proceeds to ILFA.
September is lung fibrosis awareness month and ILFA is raising disease awareness and championing the cause of patients and the lung fibrosis community. For more information, contact us at info@ilfa.ie or 086 8715264.
