Free Solar Installation Through SEAI Scheme 🌞

Have you heard about the Solar PV for Medically Vulnerable Scheme? This government-backed initiative provides free solar panel systems to households where someone relies on electrically powered medical equipment—helping ease the burden of energy costs while ensuring a more sustainable power supply.

Who Qualifies?

  1. “The scheme is open to households where a qualifying individual is dependent on equipment including (but not limited to) life protecting devices, assistive technologies to support independent living and medical equipment, or particularly vulnerable to disconnection during winter months for reasons of advanced age or physical, sensory, intellectual or mental health.” https://energyefficiency.ie/blog/fully-funded-solar-panels-for-medically-vulnerable-people/
  2. The dwelling must have been built and occupied before December 31, 2020, and be deemed structurally suitable for solar installation.

What’s Included?

The scheme is fully funded by the Sustainable Energy Authority of Ireland (SEAI). Qualifying households receive a 2 kWp solar PV system, which typically includes:

These systems can significantly reduce electricity bills—especially beneficial for those using high-energy medical devices daily.

How the Scheme Works

Although the scheme is funded by the Sustainable Energy Authority of Ireland (SEAI), it is delivered through Ireland’s main energy suppliers such as Electric Ireland, Bord Gáis Energy, Energia, and SSE Airtricity. If your energy provider hasn’t contacted you regarding the programme, you should contact them.

The process typically involves:

  1. An initial eligibility and suitability check
  2. A technical survey of the home
  3. Installation within approximately 6 to 12 weeks

Progress So Far

As of early 2025, the scheme has gained considerable momentum. Over 200 households had solar systems installed by the end of 2024, and the pace accelerated in 2025. By February, 83 installations were completed, with more than 100 in progress. The Department of Environment, Climate and Communications expects up to 1,440 homes to benefit by year’s end.

Why It Matters

For those dependent on medical equipment, a reliable energy source isn’t optional—it’s vital. This initiative not only improves quality of life through reduced energy bills and increased energy security, but also aligns with Ireland’s broader climate goals by expanding access to renewable power.

Contact Your Energy Provider Today

If your household includes someone on the Priority Services Register, you may be eligible for this life-enhancing support. Contact your energy provider to learn more or confirm eligibility.

FOR IMMEDIATE RELEASE
17 June 2025

Dublin, Ireland — The Irish Lung Fibrosis Association (ILFA), the national patient organisation for lung fibrosis, warmly welcomes the commencement of the Human Tissue Act 2024 today. This landmark legislation brings into effect a much‑anticipated “soft opt‑out” organ donation system, a milestone long supported by ILFA and the broader Irish Donor Network.

ILFA has campaigned relentlessly with the Irish Donor Network and others, urging the introduction of an opt‑out model designed to significantly bolster Ireland’s donor pool. With nearly 700 people currently awaiting organ transplants in Ireland—including many individuals living with progressive lung fibrosis—today’s enactment offers new hope and a second chance at life for patients and their families.

“We are delighted to see this long‑awaited legislation commence,” said Maureen O’Donnell, CEO of ILFA. “The soft opt‑out system better aligns Ireland with leading organ donation nations and marks a transformative shift in societal culture around donation. Our hope now is that the HSE, Department of Health, and transplant services promptly invest in public education, infrastructure, and staffing to reverse the dramatic decline in lung transplants and to ensure the success of this new approach.”

ILFA continues to echo calls from its fellow Donor Network members for:

“Talk to your family members and make your organ donation wishes known.” added O’Donnell. “We see examples every day of how organ donations can save lives.”

About ILFA

Founded in 2002, ILFA supports lung fibrosis patients and the larger caregiving community through advocacy, education, research and supports. The organisation advocates for patient-centred policy, timely access to treatment, and improvements across the transplant journey.

Notes

For media enquiries or further information:
Maureen O’Donnell, CEO

ILFA
Email: info@ilfa.ie | Phone: 086 871 5264

It’s been a very busy week for lung fibrosis!

Pictured(left to right) K McVicker, MD Macauley, C Edwards, R Hurley, M O’Donnell, Sean O Se, J Egan, E Cassidy, G O’Dowd, O McCafferty.

While Ed Swain and Ian Macbeth were running 217 kilometres from Dublin to Galway to raise awareness for lung fibrosis across the public, ILFA was at Leinster House raising awareness too (but in a very different way!). I was joined in the A.V. Room by Professor Jim Egan (ILFA Co-Founder and Board Member), Olive McCafferty (Respiratory Physiotherapist), Michael Darragh Macauley (ILFA Patron), Robert Hurley and Sean O Se (Patient Advocates) as we launched ILFA’s Strategy for Equitable Lung Fibrosis Patient Care to over 40 TDs and Senators. It was a brilliant turnout thanks to you! You contacted your representatives and they responded, attending the presentation, hearing our stories, and asking thoughtful questions. Several stopped by after the presentation to express their support going forward. Several as well told us of their own personal connection to lung fibrosis…whether it was a family member with the condition or a GP with lung fibrosis patients in his practice, they felt a deep sense of connection with our cause.

Afterwards, while members of our delegation celebrated with a well-deserved tea at Buswells around the corner. Our political advisor (Kathleen O’Meara – the best in the business) and I stayed behind to catch members of the Health Committee who were unable to attend. We made our case to them and they promised support going forward.  Our next stop will be to meet with Minister MacNeill in early July, and then we hope to meet with the Health Committee in September during our next awareness raising activity, Lung Fibrosis Awareness month.

You might not have seen much in the news about our work this week – which has been disappointing – but we reached our target audience of politicians and that’s really what mattered.

And it matters perhaps more than we realise…just an example…the very next day I attended a conference hosted by the European Respiratory Society on preventing respiratory diseases. There were many powerful presentations highlighting the links between respiratory disease and pollution, climate change, and other environmental factors. Panel members discussed education interventions, new ideas for testing and early treatments, it was really exciting…except for one thing. There was no mention of lung fibrosis! Presentation after presentation about COPD, asthma, and every other significant respiratory disease except lung fibrosis. An HSE representative touted the new regional care model and the respiratory programme providing pulmonary rehabilitation to people with lung diseases, failing to mention that this community model and the pulmonary rehabilitation programme excludes lung fibrosis patients. Another researcher from UCD provided a “comprehensive” overview of respiratory diseases in Ireland, all the while failing to mention lung fibrosis. I was shocked – how was lung fibrosis not a part of the conversation?

I left that conference thinking that in many ways lung fibrosis is a forgotten disease. And I’m angry about that – it shouldn’t be this way – not in a country as wealthy as Ireland. Everyone has the right to proper healthcare, lung fibrosis patients included, and this week we made some progress in ensuring the HSE isn’t allowed to forget. For me, that is what this week was about, being the flea on the elephant of the HSE’s bureaucracy.

So well done to Ian and Ed on their incredible feat of physical endurance – we are so grateful for your help getting the word out. And well done to our advocates who contacted their TDs and Senators. Well done to our advocacy team too. And last but not least, well done to our patients, for having the strength and determination to fight this disease every day. You inspire us and you motivate our community. Working together we won’t let the HSE forget lung fibrosis; we’ll demand better services and eventually we’ll prevail.

Thank you so much for your support!

The Irish Lung Fibrosis Association have today launched a new strategy calling for a radical overhaul of services – including a nationwide clinical programme, investment in community services and a national registry of patients.

The strategy was launched today by the Irish Lung Fibrosis Association (ILFA) at a dedicated briefing for TDs and Senators at Leinster House.

Lung Fibrosis affects approximately 5,000 people and is a progressive disease, causing scarring of the lungs which makes breathing difficult and shortens life expectancy. Often patients need oxygen to assist breathing. Most commonly diagnosed in people over the age of 65, lung fibrosis numbers are rising with an estimated 1,000 new cases diagnosed each year.

ILFA CEO Maureen O’Donnell said: “Despite being on the increase and a devastating disease that significantly shortens lifespans – patients experience long delays in diagnosis, fragmented care, and an inability to get the treatments and multidisciplinary services they need.

“Lung fibrosis patients are turned away from their community medical services that Sláintecare promised. Despite being severely ill they are forced to travel long distances, at their own cost, to receive care they badly need and this is unacceptable.

“For these reasons ILFA, together with patients and the medical community are today launching a Strategy Achieving Equity: Innovating Lung Fibrosis Care in Ireland (2025–2028) to improve quality of life and outcomes for the thousands people with this condition.

“The plan calls for urgent structural reform, significant investment in community care in all regions, and stronger public and political recognition of lung fibrosis as a national health priority.”

Lung Fibrosis patient Seán Ó Sé from Kerry told how the shortage of services delayed his diagnosis.

“When my breathing difficulties started six years ago, I did not know the challenges that lay ahead. I did not have a timely diagnosis – it took 18 months to be diagnosed with Lung Fibrosis. When I was finally diagnosed, I was informed that it was extremely unlikely that I would be eligible for a lung transplant because of my advancing age.

“There is no cure for Lung Fibrosis, but once diagnosed patients should receive specialist care (anti-fibrotic drugs) which slow disease progression. Unfortunately, specialist care is limited to eight centres, most of which are in Dublin. I live in West Kerry and must travel a large distance to receive care – the cost of which is borne by me.

“I have met other patients who wait years for a correct diagnosis. Once it is received, geography and income are more likely to determine the quality and speed of care than severity of symptoms. It’s not fair that Lung Fibrosis patients do not get the care and treatment often available for other diseases, and that are not as imminently terminal as this condition.”

ILFA’s research reveals stark geographical disparities. Appointment waiting times of two to three months are common, particularly for patients living away from urban centres.

The charity today urged the Government to act on the recommendations in the strategy and commit to a National Clinical Programme. The strategy is the result of a rigorous six-month independent review led by Prospectus Consultants with inputs from healthcare professionals, patients and international comparators.

Maureen O’Donnell said action to address the unmet needs of patients with Lung Fibrosis is long overdue and she called on the Department of Health to adopt the following aims:

Ms. O’Donnell concluded: “More than two years ago the HSE promised to appoint a Senior Clinician to develop a Clinical Programme plan. Today, this has still not happened. How many people have been denied care while the HSE is stuck in the mire of its own bureaucratic inefficiency? This Strategy is call to action that the Minister for Health and HSE must adopt.

“We are calling for an end to Lung Fibrosis patients being forced to make impossible choices. Patients shouldn’t have to choose between getting treatment and buying groceries. They shouldn’t have to ration their oxygen supply because they can’t afford the electricity bill.  We hear these stories every day from our community and it’s got to stop.

Read the Report: ILFA Final Strategy

 

ILFA will be launching a groundbreaking strategy for equitable lung fibrosis care in Ireland in the A.V. room of Leinster House on the 11th of June at 10 am.  

We need your help! Here is a short video from our CEO, Maureen O’Donnell with details: https://youtu.be/f6i4P4lIyV8

Between now and the 11th we need you to call or visit (don’t email) your TDs and Senators to demand they show their support for lung fibrosis patients in their constituency by attending the A.V. room briefing. Following the briefing they must champion our cause and urge the Minister for Health to implement the recommendations made in the strategy.

It is critical that we use this opportunity to affect real change and that won’t happen if politicians don’t attend the briefing. As their constituents and as patients or people caring for patients living with lung fibrosis your story is incredibly powerful to them. They want to help us but they need a reason to prioritise this. You can be that reason.

We want all TD’s and Senators to attend, but there are a few in particular that absolutely must be there. These are senior leaders and the representatives of Health Committee in the Oireachtas and they are as follows:

Please contact only the politicians in your constituency.

Thank you for your support!

Replay Link: https://youtu.be/YILEdjrCl3g

Read our Latest Newsletter Here: Spring-Summer 2025

We are inviting all respiratory medical professionals to attend our Mental Health Training Day for healthcare professionals on 18th June 2025 from 9:30 am to 4:30 pm at the Pillar Centre in the Mater University Hospital. This engaging and inspiring event will give you and your colleagues a better understanding of the benefits of mental health and offer practical strategies that will help you care for seriously ill patients while minding your own wellbeing.

The interactive sessions, combining theory and practical exercises, have been developed by ILFA in collaboration with Dr. Elizabeth O’Brien, Principal Specialist Psychologist in Respiratory Medicine, Mater Misericordiae University Hospital. Key topics include: Understanding Mental Health Challenges, Communicating with Empathy, Caring for Yourself – a Mindfulness Based Support System, Caring for Your Colleagues – Mental Health First Aid Overview.

Speakers Include:

Dr. Elizabeth O’Brien, Principle Specialist Psychologist  – Mater Misericordiae University Hospital

Professor Winifred Ryan – Lead of the National Healthcare Communication Programme – HSE

Professor Gaye Cunnane – Consultant Rheumatologist and Recent Director of Health and Wellbeing – RCPI

Mr Donal Scanlon – Head of Mental Health First Aid Ireland

Email info@ilfa.ie to register!

ILFA are delighted to have contributed to this consequential report on the future of disease registries in Ireland.

“Patient registries are more than just electronic databases; they are tools to transform real-world clinical, social,
and patient-reported data into actionable insights. A registry is an organised system that collects standardised
data over time using observational methods to collect data for a defined population (e.g., by disease, condition,
or treatment). Registries can support research, public health, health care planning and delivery, policy decision making, and inform clinical practice, differing from electronic health records (EHRs) by focusing on longitudinal data for specific scientific or policy purposes rather than individual patient care.
Through statistical analysis, registries identify patterns in clinical, epidemiological, and social data over time,
guiding healthcare providers and policymakers in making informed decisions. As centralised repositories of
information on specific diseases, registries enable better understanding and management of health conditions at
a population level. Registries are crucial in demonstrating the real-world effectiveness of new treatments or
public health initiatives, facilitating healthcare planning and delivery, and enabling clinical trial access. Without
them, patient care and outcomes, research and development and our healthcare system suffer.
Ireland’s registries play a significant role in collecting and leveraging patient data for research, policy, and
practice. Many existing Irish registries have over a decade (some 20 years+) experience collecting, digitising, and
using data to inform research policy and practice as well as contributing data to international registries,
enhancing patient access to therapies, clinical trials and global evidence bases.

Read the full report here: https://cfri.ie/wp-content/uploads/2025/05/FoRT-Report-5-25.pdf

The next “Let’s Talk” event from the Irish Lung Fibrosis Association will take place on Monday 19th May at 2pm.

“Let’s Talk – Understanding the Role of Lung Inflammation During IPF’” will be delivered by Professor Adam Byrne, Professor of Respiratory Immunology at University College Dublin School of Medicine and will be followed by a Questions and Answers Session.

Please email info@ilfa.ie to register and to submit any questions you may have in advance.