Joint Committee on Health díospóireacht -
Wednesday, 24 Apr 2024

Health Services for Persons with Lung Fibrosis: Discussion

An Cathaoirleach

I welcome all our members and witnesses. The committee will commence its consideration of the health services necessary and available for persons with lung fibrosis. From the Irish Lung Fibrosis Association, I am pleased to welcome Ms Maureen O'Donnell, chief executive officer; Mr. Michael Darragh MacAuley, patron; Mr. Robert Hurley, patient advocate; and Ms Nicola Cassidy, board member. I also welcome Dr. Killian Hurley, respiratory consultant at Beaumont Hospital, and Ms Olive McCafferty, senior physiotherapist with the heart and lung transplant unit at the Mater University Hospital.

Before we commence, I remind the witnesses of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person or entity by name or in such a way as to make him or her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if the witnesses' statements are potentially defamatory in relation to an identifiable person or entity they will be directed to discontinue their remarks. It is imperative that the witnesses comply with any such direction.

Members are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person outside the House or an official by name or in such a way as to make him or her identifiable.

I ask Ms O'Donnell to make her opening remarks on behalf of the Irish Lung Fibrosis Association, ILFA.

Ms Maureen O'Donnell

I thank the Chairman and the members for this opportunity to be here today advocating on behalf of patients with lung fibrosis. With me today, I have Mr. Hurley, a lung fibrosis patient, and Mr. Macauley, whose family has been significantly impacted by lung fibrosis. We are also joined by Ms Cassidy, a board member of the Irish Lung Fibrosis Association, ILFA, who joined the association after her mother passed away from lung fibrosis in 2006. Since then Ms Cassidy has been working tirelessly with leading experts like Professor Hurley and Ms McCafferty to ensure that patients have the best chance at getting a timely diagnosis, accessing the best treatment, and maintaining their quality of life.

Lung fibrosis is a progressive, debilitating, terminal disease. It starts with a dry cough, shortness of breath and increasing fatigue. That is happening because the lungs are developing scar tissue or fibrosis. As the disease progresses, the lungs become more and more inflexible and patients increasingly struggle to breathe. Ultimately, they go into respiratory failure. There is no cure and the only hope is a lung transplant. The median life expectancy is three years.

We are here today to be the voice for lung fibrosis patients and their families and to highlight the inequities in the healthcare system. Gaining access to lung fibrosis care is a postcode lottery. If a person is lucky enough to be referred to a specialist centre, he or she will have specialist care and support that may improve life expectancy. If the person is not, however, then, Like Mr. Hurley, he or she might wait a year and a half to get a diagnosis. While the patient waits, the condition worsens. Thanks to his tenacity, Mr. Hurley's case was finally assessed at a specialist centre. He was properly diagnosed, put on the right therapies and given expert advice. As a result, his health has stabilised. Mr. Hurley is surviving the odds thanks to his self-advocacy. He is with us here today in order that others do not have to go through what he went through.

Another lung fibrosis patient who has survived the odds thanks to a lung transplant is Margaret, Mr. MacAuley’s sister. Margaret is in the Gallery. Mr. MacAuley is here with us today to tell the committee what it is like from the family’s perspective and how he cared for his father and has used his knowledge of fitness to support his family and the wider lung fibrosis community in their fight with this disease.

One patient advocate who is too sick to be here today was diagnosed eight years ago, and over that time she has been offered pulmonary rehabilitation just once. To maximise her health, she takes part in the ILFA’s exercise classes because there are literally no other options available to her. I put it to members of the committee that the inequity of this postcode lottery must stop.

We are here today to ask for the committee's help. It is within members' power to improve the lives of lung fibrosis patients across Ireland. A clinical care programme is our ultimate goal because it will, like nothing else can, ensure equity. We understand that this takes time and we acknowledge the steps recently taken by the HSE to develop a care pathway and a 0.2 full-time equivalent clinical advisor post.

As the HSE continues to do its work, committee members can help us build a more equitable system for lung fibrosis patients right now by supporting the following requests. First, we want patients to have access to pulmonary rehabilitation. We also want State funding for the ILFA and for patients. Currently, the ILFA receives no State funding. We require this funding to continue to operate and expand our programmes. We also want funding for patients. They are struggling with the high costs of medical care and utilities. In some cases, we have heard of electricity bills increasing by more than €500 per month as a result of people having to run oxygen equipment. Imagine having to ration your oxygen because you cannot afford to pay your utility bill. We are calling for a tax rebate system to be put in place similar to the one for home dialysis patients, and medical cards for all lung fibrosis patients regardless of age.

Our last funding request is for a fully resourced interstitial lung disease patient registry in order that we can finally know how many patients have this disease. At last week's meeting, Deputy Shortall said that we cannot manage what we cannot measure. How can we plan for lung fibrosis care and supports when we do not even know how many people have the disease?

In addition to funding, we are asking to streamline the oxygen provision system. Lung fibrosis patients are forced to navigate an inefficient and bureaucratic system that makes it a struggle to get the oxygen they need and once they have it has them waiting months for reimbursement. We are asking for a direct payment system to suppliers, cutting out the patient middleman. In summary, our asks are: access to pulmonary rehabilitation; funding for the ILFA's programmes and offsetting patient costs; streamlining the oxygen provision system; and our ultimate goal of establishing a clinical care programme for lung fibrosis patients.

By taking these actions members of the committee can put an end to the postcode lottery and ensure that patients get the care they need, regardless of whether they live in Dublin or Donegal or any other community across Ireland. I thank the members for their time. I will ask Mr. Hurley and then Mr. MacAuley to briefly speak on behalf of lung fibrosis patients and their families.

Mr. Robert Hurley

I am 50 years old. After a lung biopsy in June 2021, I was luckily referred to the Mater hospital. I was in a very poor state at that time. In October 2021, I was diagnosed with lung disease. I was given high-technology drugs, I was put on oxygen therapy and I was placed on a lung transplant list. From there, I went home and tried to go back to work. I quickly realised that I would not meet the criteria for a lung transplant if I continued working.

In consultation with my wife and family, we put a plan in place that I would concentrate on my health and she would look after the financial side of things. Luckily, after that decision, on the advice of the Mater hospital, I contacted the Irish Lung Fibrosis Association, ILFA, and from there I started these pulmonary classes. Two minutes would not justify the health and wealth those classes mean to me personally and everybody else who has my condition from a physical, mental and educational aspect as well as being in the comfort of your own home being taught by professional physiotherapists. It cannot be measured.

I find myself now with another issue; a battle outside of my control. I need oxygen to be here today. It only arrived on Monday, so I was not 100% sure. On top of that, people are left in limbo. I rang and complained. The HSE sent me a letter on Monday, saying it could not help me because it was not a medical card issue. My file is thick in terms of my application for a medical card, which was refused.

After 30 years of working, I feel let down by the system. Basically, I am paddling my own canoe. Without the help of ILFA and the doctors and wonderful staff in the Mater hospital, I would not be here today to tell my story. I am hoping someone will listen. I have no access to any facilities other than what ILFA has provided. If it is not looked at, not alone will we have people dying on trolleys in accident and emergency departments where I come from, we will have people dying in their homes because they have no care and no access to oxygen.

I am hoping somebody will listen. This is my story. I am delighted to help those people who cannot be here today. I thank members for listening.

Mr. Michael Darragh MacAuley

I thank Mr. Hurley for that; it was powerful. I wish everyone a good morning. I thank the Chair and committee members for giving us this hearing with the Irish Lung Fibrosis Association. I am here to give a very small insight into life with the condition. I have been a patron for ILFA since 2012 and although I have not been diagnosed, and hope not to be, I have been significantly impacted by lung fibrosis. My father, Dr. Michael MacAuley, passed away from the disease in 2012. My sister, Margaret, was diagnosed in 2020 and received a double long transplant in October just gone. Thankfully, she is with us in the Gallery. My brother, Joseph, has been diagnosed with the condition and is currently living well in Australia. On top of this, my auntie also has the disease and received a single lung transplant in 2015. Therefore, it is safe to say I know my way around the Mater hospital heart and lung ward at this stage.

I am not a consultant in this space and I will not try to be, but I want to give an overview of how I have seen family members with this condition struggle and how we could and should make their lives easier. There is no doubt that a heavy burden of familial pulmonary fibrosis exists in our family, as described above. To add to that, there is a 50:50 chance of all first degree relatives being affected by this condition, including myself. It is imperative that our health system provides adequate resources and support for affected patients and relatives, as Mr. Hurley so eloquently explained.

As someone who is passionate about the virtues of exercise from a sporting and well-being perspective, it is even more important for somebody living with lung fibrosis. It is well-recognised that exercise is a hugely important part of the journey for someone with this disease in order to protect their lung health and have a better quality of life. I have witnessed the challenges they face, particularly as their condition deteriorates, and understand the absolute necessity for access to pulmonary rehabilitation as soon as possible after diagnosis and at regular intervals as the condition progresses. Both my father and sister struggled to access this, and it is something I believe must be provided as part of our clinical care programme for all patients.

As part of the struggle for pulmonary rehabilitation classes, I have been teaching yoga, online and in person, to patients with lung fibrosis disease for more than ten years, and I have seen the benefits that has come from that both mentally and physically. Both my father and sister were on oxygen as part of their treatment. This was often a limiting factor in their exercise capabilities as they needed to ensure they always had adequate oxygen supplies. This needed to be increased significantly in order to carry out any exercise. This often causes a lot of additional stress for patients trying to conserve their oxygen supplies while balancing doing their exercise and being able to leave the house. As Mr. Hurley said, a decision on whether he can come to Dublin today should not be based on how much oxygen he may or may not have in the house.

In summary, life with lung fibrosis is hard. Please let us not make it any harder. I hope the committee listens to and acts on the requests today from the Irish Lung Fibrosis Association.

An Cathaoirleach

I thank all the witnesses very much for coming in and telling their stories. I welcome Robert, Michael and Margaret, who is in the audience, and the other guests who are here today. I will throw it open now to members of the committee. Deputy Durkan is leading us off.

Deputy Bernard J. Durkan

I welcome our witnesses this morning. I thank them very much for their introductory remarks. We have all seen evidence of the stress that can be caused by this particular complaint. I will ask whether, for instance, smokers are particularly vulnerable. We used to hear it in days gone by. My father suffered from something similar, which was called emphysema at the time. He smoked heavily, but it was not the cause of his death. Unfortunately, something else intervened in between. What about Covid-19? Was the situation affected by Covid? It was anticipated that Covid would affect respiratory illnesses.

Ms Maureen O'Donnell

In terms of the Covid question specifically, during Covid, lung fibrosis patients who were admitted to hospital died at a rate of 50%, so half of them died. That compares with approximately 20% of the general patient population during Covid. Maybe Dr. Hurley could talk about that a little bit more.

Dr. Killian Hurley

It is a great question in terms of what puts people at risk of getting fibrosis. Smoking is a risk factor. It does not directly cause fibrosis but, certainly, it is a risk factor. Covid can worsen fibrosis, as Ms O'Donnell said. In our hospital, half the patients who had fibrosis and got Covid in the first wave died in hospital. They did not make it home at all.

Whether Covid causes fibrosis for someone who does not have a pre-existing diagnosis is still unknown. However, we know that when we follow patients a year after they have had Covid and were admitted to hospital, approximately 7% or 8% of them have some sign of scarring or fibrosis on their CT scan. There is a sense that it will put people at risk of fibrosis in the future, but we are unsure about what that number will be. It may take us years to find out that number.

Deputy Bernard J. Durkan

What about working in dusty conditions?

Dr. Killian Hurley

That is a great point. The risk factors are smoking, male gender and dusty work conditions. That is really for one of the types of fibrosis, but there are lots of different types of fibrosis and they can be caused by different occupational exposures. Then, other exposures at home can lead to fibrosis as well or put people at risk of it.

Deputy Bernard J. Durkan

Are there any particular ones we should know about that could be of benefit to perhaps people who may feel they are in that category?

Dr. Killian Hurley

The advice is that smoking is a risk factor for lots of different diseases but certainly for pulmonary fibrosis, that is one of them. Exposure to different types of things like different types of dusts at work can be a risk factor for fibrosis too. Then, there are some unusual exposures. People working with different types of animals or different types of mushrooms can put them at risk of getting fibrosis. They are well-documented, but they are probably rarer types of fibrosis. We do not know the cause of the most common type of fibrosis. It usually occurs in people who are greater than the age of 60, and mostly in men. It is approximately 60% or 70% men. The main cause of fibrosis is still unknown.

Deputy Bernard J. Durkan

I was speaking with a person who had a test done some time ago. I presume this was his own conclusion and there was no truth in it, but he concluded that the actual test aggravated his condition.

Dr. Killian Hurley

Right.

Deputy Bernard J. Durkan

Would that be possible? I am not making a case for people not having any tests, but maybe a different type of test could have achieved the same result.

Dr. Killian Hurley

In the short term, a breathing test can make you cough and feel breathless, but there is no risk in having a breathing test. It does not cause any type of disease that we know of. The main type of test we use to diagnose fibrosis is a CT scan of the lungs. That in itself does not cause any damage to the lungs. That is the main way we diagnose someone. People who come to my clinic are often referred from a GP or by a colleague. They will have had a cough or shortness of breath for some time, will have had the usual tests and may have tried some other treatments for asthma or COPD. On average, it can take a year or even two years for someone to get to that diagnosis. That is delayed in Ireland because we do not have access to good diagnostics in the community. They come to my clinic, either they have a CT scan or I will request one, and then we will make the diagnosis, but that is usually a diagnosis made between a group of us on a multidisciplinary team. It is quite a big group of people who sit together, look at the scans, think about what they show and then try to make a diagnosis.

Ms Maureen O'Donnell

May I add to that? What Dr. Hurley has talked about is an example of when somebody goes to the right place, ends up getting diagnosed properly and goes through the care. One thing Mr. Hurley was talking about was the way he had to take his diagnosis journey, where there was an initial test that was done and that actually did-----

Mr. Robert Hurley

Absolutely. I played hurling, football and golf. I did karate at a national level, ran marathons and Half Ironman races and did triathlons, and that was into my mid-40s. I knew there was something wrong with me. I spent a year persuading the doctor to send me to a specialist. I spent two more years in the Galway Clinic. I actually went for a lung biopsy. I am probably one of the youngest people ever to get a lung biopsy. In that period between June and August, I was left in limbo and told I was okay, even though I was on steroids for a year and a half getting that therapy. My illness today is still non-specific. I have lung disease with no history of it. I never knew anything about it. Only for the specialist I had, a colleague in the Mater, I would not be here today. I started with oxygen and walked 1 km in Lahinch. I had to stop seven times. I could do 12 rounds of boxing rather than cough for 20 minutes. That is the only way I can describe it to the committee. The lung function test was mentioned. I have to do that every six months and I do not look forward to it. I would walk with oxygen for 20 km if I could rather than do that test for 20 minutes because it physically and mentally drains you. I cannot explain it to those who have not done it themselves. You end up coughing so much. I arrived in the Mater not being able to breathe and with blue lips. I did not have a clue what was wrong with me. Only for my strong heart and my fitness, I would not be here. I have progressed only because of the care I am getting in the Mater. I have no problem driving up once a month, and I am very privileged, but there are many people not like me. Now I understand this and I have learned a lot of ways of living with it, but when I face challenges and cannot get oxygen, it is out of my control. I have to take other means to get my oxygen. That is the story with no smoking.

Deputy John Lahart

I thank the lung fibrosis team and the witnesses. Just like my colleagues, I am very taken with the content of what the witnesses say and the reality of the lives affected. I am familiar with some of it. Before I ask them a few questions based on the opening statements, I wish to point to the importance of not underestimating the power of advocacy. It is an easy thing for me to say, but one of the things I have learned as a public representative over the years is that you come in - certainly, I came in in my first term - and you think you can solve everything and be all things to all men and women. In the second term you realise that will never happen. I think we all think we can maybe focus on one or two individual things and try to make a difference there. Certainly, in this, my second Dáil term, I have seen progress in areas on which I focused, and that was a result of powerful, often quiet advocacy on behalf of people involved in NGOs like the witnesses. If sometimes it feels like they are banging their heads off the wall, sometimes the penny is dropping. They may not see it dropping but it is dropping with people and we are all trying to do little bits. There are some things I am very happy to take on here.

I wish to ask the CEO of the Irish Lung Fibrosis Association a couple of questions. Why does ILFA not receive any State funding, how long has that gone on, and how much does it cost to run ILFA?

Ms Maureen O'Donnell

I could be wrong but I believe the reason we have received no State funding before is that we have not actually made the case for getting State funding. This is the first time we are starting to come to this. The reason we are doing that is that ILFA at the moment is providing what is essentially a public service but we are doing it through funded donations and we think the State should pay for part of that. We are not asking to be entirely funded by the State but we would like to have a percentage of our income come from the State. I refer to the programmes we provide as a result of that - the education, advocacy and awareness programmes. Just a couple of weeks ago we had a patient information session which nearly 100 people attended. These are people who need information that we are giving them. They need to understand what the latest treatments are, they need to understand how the disease progresses and they need to be given advice on exercising. They may not be getting that where they live, so we are providing a vital service. Maybe Ms Cassidy would like to talk a little more about that.

Ms Nicola Cassidy

A lot of our programmes have been developed because of that need. We frequently do member surveys and ask them how we can help them. Exercise is a huge aspect of patient care. Self-care is really important for those people who cannot access hospital care or if they do not have access to a respiratory nurse specialist. To give the committee an example, the UK's National Institute for Health and Clinical Excellence, NICE, guidelines recommend that every lung fibrosis patient has a respiratory nurse specialist. In a recent survey we did, 58% of Irish patients had access to a nurse specialist, so almost half do not. We are failing those patients. I emphasise the role of the nurse specialist because it is a gateway to care. Those nurse specialists who are in the system are happy to take phone calls from patients and to direct them, whether they need to access physiotherapy or whether it is a social worker or a psychologist. When it comes to pulmonary rehab and the care of the physiotherapy team, however, only 38% of patients in a recent survey we did had access to physiotherapy. I cannot emphasise enough its importance. It keeps people well. It maintains their lung function when possible, and then, when they start to deteriorate, their care can be escalated. We have a respiratory physiotherapist here who will be able to tell the committee much better than I will the impact it has on patients but, certainly, patients feed back to us how important it is.

When the pandemic came along, everything shut down and there was no access to pulmonary rehab, so we started our online classes. We started with one class a week and progressed to two classes a week, and we are now at three classes a week. We are at maximum capacity and we fundraise to provide that service, but we could fill five classes a week. That is why we are here. At the moment, the patients with lung fibrosis are excluded from pulmonary rehab in the community because we are not part of the respiratory clinical care programme. That is direct discrimination. If our patients want pulmonary rehab and it keeps them well, they should not be excluded.

Deputy John Lahart

Is there a second round, Chair?

An Cathaoirleach

There might be.

Deputy John Lahart

Time runs out really quickly here.

Deputy Neasa Hourigan

I thank everybody here, particularly those who are sharing their personal stories. It is always a matter of regret for me that we have a system that requires people to come and tell their stories.

I want to stay on the issue of pulmonary rehabilitation for a moment. Pulmonary rehabilitation in lots of areas of Ireland is pretty low-level stuff.

Sometimes it happens in leisure centres. It can be through an eight-week course. It is very much about your lifestyle. If, for example, you have COPD, you will immediately be referred to pulmonary rehabilitation. Yet, if you have this very serious, life-limiting chronic illness that affects approximately 5,000 people, you do not have access to pulmonary rehabilitation for this condition. Is that correct? Has there been any communication from the Department about why that might or whether it will change?

Ms Nicola Cassidy

We are not in the respiratory clinical care programme, which means we have no access. We have not been told anything other than that.

Deputy Neasa Hourigan

The witnesses have not been told anything. They have never come back and said why they are excluded, even though there is a cohort with a very serious chronic illness.

Ms Maureen O'Donnell

No. Maybe Ms McCafferty wants to come in on this.

Ms Olive McCafferty

The clinical respiratory care programme is for COPD and asthma. If you have a diagnosis outside of those areas you are not entitled to access to pulmonary rehabilitation.

Deputy Neasa Hourigan

Are the witnesses aware of any review of that situation?

Ms Olive McCafferty

No.

Deputy Neasa Hourigan

Okay, I think that is a matter for this committee to take up, because it seems to be a glaring and egregious omission to be excluded from pulmonary rehabilitation courses.

I wish to give the witnesses the rest of the time in my slot to explain from their perspective what is in some ways a dumb question. Why is there no clinical care programme? Has there ever been a move to create one? This might be a question for Dr. Hurley. Has there ever been a move to create a comprehensive, funded care programme that is linked to all the relevant bodies, as well as the new system of RHAs and Sláintecare, which is coming down the line? This should be truly integrated. Is there any? Why has that not happened before? Does Dr. Hurley have any inkling that may happen in the future?

Dr. Killian Hurley

That is a great question. ILFA has addressed that with the HSE in the past. I was not actually at that meeting. Ms Cassidy might discuss that, and I will then come in on why this should be done.

Ms Nicola Cassidy

We have had recent meetings with the HSE. Since last October, we have met with them on a number of occasions. Unfortunately, we have just been told we will not get a clinical care programme.

Deputy Neasa Hourigan

Was any reason given?

Ms Nicola Cassidy

No. We received correspondence from them, which stated said that many conditions did not have a clinical care programme.

Deputy Neasa Hourigan

It stated that they were aware.

Ms Nicola Cassidy

Yes. So unfortunately, it was not progressed. While I understand that asking for a clinical care programme is a big ask, our patients need it. They are excluded. They really haven not been included in any of them. We are excluded from the respiratory programme.

Deputy Neasa Hourigan

I do not know whether asking for a pathway to care is indeed a big ask. It is actually a fairly reasonable ask. Are the witnesses aware of whether that 0.2 whole-time equivalent, WTE, clinical adviser has been appointed?

Ms Maureen O'Donnell

Not yet.

Ms Nicola Cassidy

No.

Dr. Killian Hurley

No one has been appointed. As far as I am aware, the position may be advertised soon. I have spoken to the HSE about it, and it has committed to a 0.2 whole-time equivalent to advise it on how ILD could be integrated into the existing programme. I have discussed that with it. I have also shared my thoughts, as well as those of ILFA, about that. I have worked with the HSE in the past on a pathway that describes what happens with patients from the time they see a GP all the way to when they see the specialists, including clinical nurse specialists, and go back to the GP. That has been approved by the HSE, but it has not been funded.

Deputy Neasa Hourigan

Has it not been funded at all?

Dr. Killian Hurley

It has not been funded at all.

Deputy Neasa Hourigan

What would Dr. Hurley expect a clinical programme to look like?

Dr. Killian Hurley

When trying to plan what would work as a clinical care programme, we do not need to reinvent the wheel. There are many other examples out there. The first step is listening to patients about what they need. What we do need is a registry. A big part of that is understanding where the patients are, what kind of care they are receiving and what kind of care they should receive. Second, we need to deliver care to patients close to where they live. That needs to be a multidisciplinary team including a nurse, doctor, physio and all the other people who care for people with a complex disease. We need a governing structure, which is where the care programme comes in. We need an advocate for that patient group, which needs to be someone who can look at the outcomes for patients and if they are on the right treatments. They should measure that as well so that we can know if we are treating the right patients, at the right time and in the right place, as we would like to do with Sláintecare.

Deputy Neasa Hourigan

That is okay. I thank the witnesses.

An Cathaoirleach

We will bring in Deputy Gino Kenny, who will be followed by Deputy Cullinane.

Deputy Gino Kenny

On life expectancy, in the opening statements, the witnesses said it was three years. Has that fluctuated in recent times?

Ms Maureen O'Donnell

Currently, without a lung transplant, because a lung transplant is the only way that a patient can get over this disease, the median life expectancy is three years. That is an old figure but to my knowledge it has not been updated.

Dr. Killian Hurley

I will come in on that. Without treatment, the median survival rate is approximately three years for the most severe form. That figure is completely correct. Yet, we are seeing that when patients get on the right treatment, such as through a specialised anti-fibrotic treatment, that figure can be extended by one, two, three or even more years. We have patients in our clinics that are now surviving five, six and up to ten years with the correct anti-fibrotics. These are new treatments, but not every patient is getting them. It depends on whether you are lucky enough to be in a certain area, on where you go and on whether a specialist is able to prescribe those medications. That is not the case across the whole country.

Deputy Gino Kenny

How common is a transplant in the State?

Dr. Killian Hurley

It is a rare event. Approximately between 20 and 30 take place per year. At most, they managed to do approximately 40 patients in a year in the Mater. Transplants are for a select group of patients that meet those certain really strict criteria. While it is really important for those patients, it is not for everybody. Yet, anti-fibrotic therapy is something that could be rolled out to all patients if they had the right care and the right kind of team taking care of them.

Deputy Gino Kenny

What is the life expectancy if somebody gets a lung transplant?

Dr. Killian Hurley

That is a great question. It can be between five and ten years, depending on the patient and the scenario, such as how old they were when they had the transplant, as well as other factors.

Deputy Gino Kenny

Mr. Hurley spoke about oxygen. To me, it as though it is a very elementary provision for his condition. In his statement, he said he struggles to get proper oxygen from the HSE. Why is that? As I said, I would have thought that would have been quite elementary.

Mr. Robert Hurley

When I arrived in the Mater, all this was new to me. It was Ms Lynn Fox, who is a member of the audience, who actually educated me on what to do. Basically, I arrived home and the oxygen was delivered. I was told to come back if I needed help, but I am still dealing with the obstacles facing me. The first bill came in and after that I had to tailor it to what I could afford. Basically, I have oxygen at home all the time. I receive 12 tanks per month, which I pay for. I have learned my own system-----

Deputy Gino Kenny

Is this out of your own money?

Mr. Robert Hurley

Yes, but I get it back. Unfortunately, I have to pay for it, and it costs €300 per month. I pay €1,200 on my credit card. I pay that straightaway. As soon as I pay that, I have to download forms, fill them out and get copies of the receipts of the drugs I have already paid for. Sometimes they do not come so I have to go back to the chemist and get copies of them. I have to get copied statements from the supplier to show they were paid for. If I did not, I would not be seen. I have to photocopy that and keep a copy because I need to get my tax back afterwards. I then post it away and will get a text. I will then get a letter saying that details will be sought. For example, I got one on 1 April. Yesterday, I got a letter to say that if I do not receive any correspondence by 15 May to contact a reference number. It always comes in by cheque at the end of May. You are talking about two months. I then lodge the money to cover my credit card. That is how I survive. It is a total waste of time and management. There is a huge amount of paperwork.

Deputy Gino Kenny

Is it the case that Mr. Hurley does not get a medical card?

Mr. Robert Hurley

This file I am holding up is just for this year and it does not include the photocopies I need to keep for my tax.

Deputy Gino Kenny

Is Mr. Hurley not entitled to a medical card?

Mr. Robert Hurley

I worked all my life, so I did not know anything about the social protection side of it. I was told that if you got a disease that lasted from three to five years that you would get a medical card. I worked all my life for my family. My plan was to still be in the school.

When I went to apply for a medical card I had to answer personal questions. I had to get salaries from my wife who is a teacher of many years. There was all of that stress and, unfortunately, I ended up not getting a medical card. What really annoyed me was that I went through all of this process for six months and I did not fit the criteria. With my dogged nature I got on to the HSE and eventually found out its procedure. I was never going to get a medical card because, ten years ago, we bought a holiday home outside Lahinch, County Clare, for €90,000. They made me get a valuation. We valued the house and it was valued at €400,000 because of Covid and all of the people coming down from Dublin. When I looked at the statement coming back the HSE, it said that I had investment income of €900 per week. The criteria was €800 and that was even without my salary.

Deputy Gino Kenny

That is extremely unfair.

Mr. Robert Hurley

That is just the way it is. If I did not paddle my own canoe, I would not be here without the help of ILFA.

Deputy David Cullinane

I welcome the representatives from the Irish Lung Fibrosis Association. I thank them for their advocacy. I know they are regular visitors to Leinster House and have correctly been lobbying all of us in standing up for patients in this area. I am looking at the four main asks in the opening statement. None of them are asks that should not be delivered in my view. I will start with the most basic one. This is a source of frustration to members of the committee because we see it in lots of different areas, which is that we do not have a patient registry. How important would a patient registry be from the witnesses' perspective and what value would it add?

Ms Maureen O'Donnell

As the Deputy has said, there is no patient registry today so we do not know how many people have lung fibrosis, where they are, or what their condition is. As I said in my opening statement, you cannot manage what you cannot measure. Ms Cassidy can talk more about what that would provide for us.

Ms Nicola Cassidy

It would really help us plan. When you do not know the numbers, how can you set up programmes like the pulmonary rehab? I am thinking of the hospital pulmonary rehab programmes, which will always be oversubscribed because we do not know the numbers and if we have numbers that can be fitted into the healthcare plan for those patients. We also need to know how many patients are getting the medication, how many patients need the oxygen, and what supports they need. Our figures are based on figures we are extrapolating from Europe, and our figures may be grossly inaccurate, but we do not know. I will hand over to Professor-----

Deputy David Cullinane

Before Ms Cassidy does so, I say to the Chair that this is not rocket science. The first thing we need is the patient registry. Without that, as Ms Cassidy has said, you cannot plan. Whether it is the current or a future Minister for Health or those in the HSE, you need to have the data. In far too many areas of healthcare we are not collecting the data. We do not have registries. This is one of a number of occasions where this has come up recently at the Oireachtas health committee. A registry would be a starting point, followed by a clinical care programme to encompass all of the issues that have been raised, and then the funding. If the funding does not come, you can have a clinical care programme but patients will not get the benefit of it unless it is properly resourced. I am also amazed that the organisation does not receive any funding. Its work is obviously very important. The representatives are advocating. This also comes up a lot, where we have very professional organisations advocating on behalf of citizens but not being supported. I wanted to say that because we will be tight on time and I may not be able to come back in. I am handing over the remainder of my time to the delegation to again expand on the importance of access to pulmonary rehabilitation and the clinical care programme. If the Minister for Health were here, what advice would they give him and what would be their main asks of him and the Department of Health in delivering in this area?

Ms Maureen O'Donnell

There are probably a couple of people who want to come in here. In terms of the importance of pulmonary rehabilitation, it would be good to have Ms McCafferty's perspective.

Ms Olive McCafferty

I am a senior physiotherapist working in the heart and lung transplant unit, so I see these patients daily. Pulmonary rehab is a basic need for these patients. It would allow them access to proper assessment of their oxygen and maintenance of that, because it is a progressive disease. Their oxygen demand increases, unfortunately. It would allow them access to peer support, and that is really important for them. They are not included in the current pulmonary rehab programme. Unfortunately, they might not know other people with pulmonary fibrosis, so peer support is important. It would also allow access to education about their disease and to medication. It would allow these patients to exercise in a safe environment run by physiotherapists and nurses alike. Access to pulmonary rehab is paramount for these patients and is something that should have already been done. It is the least these patients deserve to maintain their exercise tolerance, to reduce hospital admissions and exacerbations, and to improve quality of life for these patients.

Ms Maureen O'Donnell

When we talk about the clinical care programme, it is really about equity. The point we are trying to make here is that there is an unequal level of service. The clinical care programme ultimately gets us equity. Dr. Hurley may wish to speak to that.

Dr. Killian Hurley

I reinforce the point about the importance of rehab. I have had concerning communications with the transplant team about patients who have been referred for transplant but who could not even start the assessment because they were in such poor condition through being deconditioned without pulmonary rehab. It is even denying patients access to the basic assessment for a transplant, which is a very important aspect of it. Between ILFA and the Irish Thoracic Society, where I chair a committee, we have tried very hard to get a registry set up. We spoke to several people in the HSE to try to get funding for that registry. We had a registry but that was also funded through a charity. At this time, to have a registry you need to have adequate funding for the resources needed. I also spoke to the National Office of Clinical Audit, which was interested in doing that, but again it is about a lack of funding for a registry, which is a basic thing for us to understand the problem, understand where patients are and to understand what kind of treatment they are and are not getting.

Deputy David Cullinane

We can follow up with the HSE on those funding requests, which I am sure we will after this meeting. I would imagine they are not huge amounts of money that are needed.

Dr. Killian Hurley

No.

Senator Frances Black

I thank the witnesses for the great work they are doing in this area and special thanks to Mr. Hurley and Mr. McAuley for sharing their stories. I am shocked to hear that a clinical care programme is not happening. That is really shocking. I agree with Deputies Cullinane and Hourigan that, as a committee, we need to follow up on why that is. The briefing document mentioned the HSE has agreed to develop a pathway for ILD rather than the care plan this organisation has campaigned for over several years. I was surprised to see ILD patients excluded from the HSE's respiratory programme. Is there any understanding of the reason for that? Has the HSE given any explanation for why that is? I would have assumed that chronic lung disease would fall under the umbrella of an integrated care programme. Will ILFA say a little about that and what the thinking is from the HSE's perspective?

Ms Maureen O'Donnell

My understanding and everything I have seen from the HSE is that its representatives tell us no, but they do not ever give us a why. Ms Cassidy or Dr. Hurley may be able to add something more to that.

Ms Nicola Cassidy

We wondered whether it was to do with numbers and whether critical capacity was having an influence. However, as was said, we do not have a registry so do not really know the number, but we suspect it is much more than we are estimating. I do not think it is fair to say it is a numbers game because we have potentially more than 5,000 patients diagnosed with lung fibrosis.

They cannot be excluded.

Senator Frances Black

I know somebody personally who went to a consultant and was told that they had fibrosis, then when they went to another consultant, they were told that they did not. How is that captured? That can be very confusing. What kind of care plan do they get under those circumstances?

Mr. Hurley's opening statement was powerful. I did not get to hear it but I read it before I came in. Waiting a year and a half for a diagnosis while dealing with what is going on is really awful for him. Could he share a little bit about the diagnosis and what that involves? That will be important. For those supporting patients during that waiting period, such as Mr. MacAuley, do any supports exist for carers? Could the witnesses say a little about that?

Mr. Robert Hurley

I came from a fitness background. This was totally out of the blue. I had several jobs and never looked at a pay cheque in my life. All of a sudden, I knew something was wrong. It is not just a year and a half. I had to ask the doctor eventually to put me on medicine. I was put on Eklira, the COPD medication and so on. It was by luck that the doctor knew somebody in the Mater to refer me there. There is a wonderful team there. There was one guy in particular, Liam Chawke, who has gone to Tralee. He taught me everything about this because even though I come from a professional background, I knew nothing about this. I did not even know what ILFA stood for.

I was recommended for pulmonary fibrosis treatment because I had passed the test for the lung transplant. It took me seven months to deal with that. I made the decision to give up work. If I did not have family and a wife that worked, I could not do this. There is stress involved that cannot be measured. I did not do the pulmonary because I said I was too young and fit, but I can tell you, I was forced to do it because every time I met the lung transplant crowd, I had to have it done, so when I gave up work, I had time to do it. I was surprised and shocked for three weeks. I felt every muscle in my body because I had not been using those muscles since I retired from physical sport. When I got a cold or a flu, I was down for three or four weeks. I ended up back at square one again. It is a vital part of it, which I would not have known. A physical aspect of it is needed. It is probably 50% or 25% of the reason I am okay with getting the proper high-tech drugs and access to nurses and respiratory care. I have that.

There are things you cannot control, such as oxygen. If I cannot control that, I am at their mercy and I do not like that. I will queue up if I have to and I have done so, but not everybody can do that. They are not strong enough to go down and ask for it. I met a woman in the street who asked me if I would talk to her husband. He was prescribed 2 l of oxygen. He would not come out of the house. He was 70. I did that. I got a text last night. I thought it was just because I did not have a medical card that I got a letter from the HSE saying it could not help me. The woman texted me last night at 12.15 a.m. He is on 40 l of those tanks every month. Their daughters, who are living there, have to go down and beg for them. People with medical cards have problems too. They should be dealing with them if they are not dealing with me.

Senator Frances Black

What about Mr. MacAuley?

Mr. Michael Darragh MacAuley

This hits you like a tonne of bricks. I did not want to know what ILFA was 15 years ago. It is key. The clinicians will speak on it. I will not try to speak ahead of them, but the sooner we get the rehab, the better. We struggled to get that for my dad at the very start. I was sitting down and trying to work out fitness programmes with my limited knowledge. We were trying to bring him to the gym and do all those things for him. It needed to be part of an integrated programme, which it was not at the time. We were slightly more aware of it from what we went through with my dad when we had to go through it again with my sister. These are the supports they need to wrap around. My brother was in a similar situation where he struggled with his diagnosis. Since he has received the diagnosis, he has been actively going after that pulmonary rehab. I had conversation with Mr. Hurley before I came in. When my brother retested, he was in better shape than he was for the previous test. It was so important to go after that. These are things which we are learning which we did not necessarily want to learn about, unfortunately. We really need it as part of an integrated programme.

Senator Seán Kyne

I welcome all the witnesses. Apologies. I was in the Seanad earlier, speaking on a matter, and missed their opening statements. From coming in here today and reading the opening statement, I have learned a lot that I did not know about, was not aware of and do not have experience of. I acknowledge that and the witnesses' advocacy, both personal and professional, with regard to lung fibrosis. The witnesses talked about the register. Obviously people are coming to them as an association, so they have an idea. What is their best guesstimate of how many sufferers there are?

Dr. Killian Hurley

Looking at the numbers across Europe and trying to extrapolate that number to Ireland, we think 5,000 people in Ireland have fibrosis. That equates to approximately 1,000 people per year receiving a new diagnosis. That is three to four patients a day with a new diagnosis. This really adds to the urgency of this. Half of those three or four people a day are not getting physiotherapy or seeing a specialist. They are wandering around between specialists until they find someone who has the experience to make this diagnosis. Quite a number of patients do not have access to specialist care and specialist treatments each year.

Senator Seán Kyne

What is the waiting list for lung transplants? The witnesses say there is no cure. How many transplants are performed yearly due to lung fibrosis?

Ms Olive McCafferty

There are probably 30 people on the active waiting list and double or triple that are probably looking to get assessed.

Senator Seán Kyne

Is that due to fibrosis or in general?

Ms Olive McCafferty

The majority of transplants being done are on pulmonary fibrosis patients. It was previously cystic fibrosis but, due to medication improvements, that has reduced and the majority of patients who are receiving transplants are pulmonary fibrosis patients. Per year, an average of 30 to 40 transplants happen, so it is not touching anywhere near the number of patients who are diagnosed with pulmonary fibrosis.

Senator Seán Kyne

Thirty to 40 per year.

Ms Olive McCafferty

Roughly.

Senator Seán Kyne

On electricity costs and oxygen, the witnesses say that, across the board, there are access issues whether people have a medical card. What advocacy has been done before this with regard to meetings with Ministers for Health, Ministers for Finance or parliamentary questions? What sort of engagement has there been? Have the witnesses had any heretofore?

Ms Nicola Cassidy

Oxygen therapy is undergoing a new process. New contracts have been awarded. That process started pre-pandemic. At that point, the patient organisations with an interest in oxygen approached the HSE to be involved in that discussion. These contracts are really important because the end user is the patient. We wanted to be the patient voice. We actively engaged in that and brought patients along to meetings with us. When the pandemic arrived, that essentially came to a standstill and has restarted in the last two years. We have been engaging with the community-funded scheme, which is rolling out the new contracts. Communication could be better. My big concern is that most lung fibrosis patients will require oxygen at some point. I have repeatedly asked for communication that we can share with patients to relieve any anxiety that will come.

That has not happened yet. Those contracts are imminent. They have been pushed back this year maybe three times. My understanding is it is to happen in April. There is a meeting we will attend with other patient organisations, but there is still no communication available for patients to reassure them this contract will improve things and has their best interests at heart. That has not happened.

Senator Seán Kyne

Could that could be signed imminently?

Ms Nicola Cassidy

Ms McCafferty might help me here, but my understanding is the contracts have been signed.

Senator Seán Kyne

They have been signed.

Ms Nicola Cassidy

They have been awarded, but there will be a new provider coming into the market and an existing provider will be exiting, so there will be a transition period. My real concern is that if people are on oxygen and they are getting used to the process even though it is so cumbersome and difficult, if they suddenly get notification they are no longer with company A as we are moving they to company C, that has not been taken into account. We kept being told there is nothing to worry about. As a patient organisation we are worried. The communication needs to be enhanced.

Senator Seán Kyne

I thank the Chair.

An Cathaoirleach

The witnesses probably need to explain a bit more about the challenges that are facing patients. Mr. Hurley mentioned the deliveries. I know the private company was delivering, but there was mention of a family who had to collect it themselves. That seems absolutely bizarre.

Mr. Robert Hurley

I had no problem with oxygen deliveries up to about six months ago. I obviously ask the drivers, because I get to know them personally, and they deliver at times that suit them. I do not mind, but generally I get my oxygen the day after I order it because when people are paying for it themselves, they can only order so much and once those 12 are gone, they start again. However, if am waiting two weeks then half my month I have paid for is gone, so I am sitting at home waiting. I cannot do anything. They tell me that with the drivers there are 28 left off. The crowd I am with are the ones who are losing the contract. I do not know if that is a coincidence or not; it is above my pay grade. I am just asking how, all of a sudden, I am left two weeks, three weeks, ten days and if I do not ring, I definitely will not get it, that is, if I do not keep following it up and saying I am paying for it myself.

An Cathaoirleach

Again, is it not like a prescription? In Mr. Hurley's situation, is an order for oxygen not a prescription? Is that not an automatic roll-out every week or month?

Mr. Robert Hurley

It should be because I am paying €80 every month anyway. The paperwork is a waste of time. The application is a waste of time. The cheques are being processed. I am buying stamps and posting them off every two months. They are sending me taxes. There is all this processing and time and effort going into servicing it and the PO box. I get all the money back, though I am waiting six to eight weeks. It is a cash flow headache for me and when someone is not working, it is quite a big one. Only for the support of my family and my wife I would be in trouble. It is that simple.

Ms Olive McCafferty

I do not mind speaking to that as well, from a practitioner point of view. If a patient is prescribed 40 cylinders per month, they are only delivered every week. The patients have to ring every week or every two weeks to ask for the next delivery even though they are entitled to it. There are patients being told there is no driver coming their way for the next week so they cannot leave the house then, because they do not have oxygen to leave the house. These patients are at the mercy of these companies - which are doing their best, I can see that - but there should be a more streamlined service for these patients so they do not have to get reimbursed every month. They are being asked for the same thing every month and waiting for a cheque to come in the post to pay off their credit card bills. Surely there could be a more streamlined service similar to drugs at the pharmacy. Patients cannot leave the house unless they have oxygen. It is essential and it is not seen at present that it is an essential drug. These patients are being told to wait. I have had patients ringing me from car parks unable to leave because they do not have oxygen. They are stranded in a car park because they have run out of oxygen.

An Cathaoirleach

It is not for safety reasons the companies are saying they cannot give so much oxygen. I assume patients can store the oxygen outside and it does not have to be in the house. I was dealing with someone and that was the excuse he was given. He was told it is very dangerous and that he should not be lighting fires. That is all taken for granted. Does Mr. Hurley typically keep a supply of a day or two days' worth if he can afford it?

Mr. Robert Hurley

I could not tell the Cathaoirleach why. I get my oxygen because my brother-in-law is an agent for it and he gives it to me if I am stuck. Other than that I would not. What scares me is all these tanks are refilled and when the agent comes and changes, is there due diligence done by the HSE to ensure there are enough tanks there? Based on the number of tanks that I hear are being used, if they are coming from somewhere else and they do not have the capabilities, I am scared witless I will end up trying to do an alternative way of getting it, because my supply is definitely affected. If it changes for the worse, where are we left?

An Cathaoirleach

Let us park that issue. Maybe it is something we can follow up with the relevant authorities.

On the reimbursement, I am not asking for this now, but I am asking for some samples of the challenges that are facing people. Again, I thank Mr. Hurley for telling his story. We have had staff from the medical card section in here and it is a terminal condition. If someone has terminal cancer, he or she is automatically covered. That is something we can follow up. Then there is the cost element of it. There must be a simpler way. We are dealing with families who are in this situation where there is terminal illness. They last things they want to be doing is trying to chase this up and form-filling. That is taken as read right across the system. We get the officials in. There might be something in relation to that. On the postcode lottery aspect, this is an awful question to ask but where is the worst place to be and where are the better places to be as far as that is concerned? We had long Covid people before us last week. Again, there are problems. The Mater was mentioned today. There is a problem with the systems talking if someone's heart specialist is in the Mater and his or her lung specialist is in St. James's. Do the witnesses come across that problem? I am conscious lung fibrosis impacts on other organs as well.

Ms Maureen O'Donnell

On the postcode lottery, if people go to their GP and the GP does not know about lung fibrosis, which many of them would not, they may not be able to do the right tests. They may not know there is a specialist care centre out they could get referred to. As a result, that is where we are finding patients are ending up taking a long time to get diagnosed and have issued once they are diagnosed. They are not getting the care they need. The specialist centres, in contrast to that, are able to provide, as Dr. Hurley was talking about, the team of people able to get patients the information they need, which can, as he was saying, potentially extend their lives beyond that median statistic I was talking about earlier. Going back to the idea of the clinical programme and what that does, it creates a more equitable system whereby there is clarity for the GPs when they see this coming in about what this could be and what they need to do to be able to get the people properly diagnosed and treated. Dr. Hurley may wish to add to that.

Dr. Killian Hurley

That is very accurate. There are a number of centres that have a speciality interest and that has grown organically but not in a planned way. There are more centres in Dublin, Cork and Galway, but if we are talking about the entire west coast, especially up to County Donegal, there is very little care there really. I have patients who travel from Donegal or from the west to see us in Beaumont Hospital because they cannot get access to a centre on the west coast. There are services in Galway, but they are really stretched and they have to cover the whole western seaboard as well. There is definitely inequality in the care that is there.

Each of these centres does not have a full team. For example, we do not have a physiotherapist who can do pulmonary rehabilitation in Beaumont Hospital. Even though we have put in business cases, there is a recruitment pause or embargo right now so we do not have that team. Not every centre that sees patients has a full team that is able to provide a full service to patients.

Deputy John Lahart

ILFA is the second group in today to mention a registry. As the Chair has said, there are groups who are regularly in here. Vision Ireland acts on behalf of people with visual impairment and sight challenges but there is no registry. We seem to depend on the census to get a picture of how many people have a certain ailment. Of course a registry is an acknowledge of numbers and if one has an acknowledgement of numbers, and names, there is a responsibility to act on that. We do not have a registry for autism. The situation is beyond bizarre.

Mr. MacAuley mentioned his brother who lives in Australia. He said that his brother is in good health and please carry all our best wishes to him. Is Mr. MacAuley aware, from chatting to his brother about his condition, of differences between the approach in Australia and here?

Mr. Michael Darragh MacAuley

Yes, that is a good question. My brother is a consultant in emergency medicine over there. He is at the very early stage of diagnosis so he has not had to go through the whole process yet. He has only started on the anti-fibrotic drug that has been mentioned here. I will look for any similarities and differences in terms of improvement which we will see when his condition, unfortunately, deteriorates. At this point it is still early days for him.

Deputy John Lahart

This is a formal Oireachtas committee but there are informal cross-party Oireachtas committees. I chair a cross-party Oireachtas committee on rare diseases and orphan drugs, which is a result of the second termism that I spoke about earlier. Other Oireachtas colleagues are chairs of different ad hoc committees, which make quite a lot of progress that way. I am very happy to do something for the association, regarding the cross-party committee, if our guests thought it would be useful as it would be another platform and cross-party committees set actions. My cross-party committee has had a bit of success with Huntington's disease, which is as rare and challenging as it gets. They are nowhere near a clinical pathway but they are kind of on the radar and they were not on the radar. I think that is a fair reflection of what has happened. A cross-party committee is an option and, for impact, it is the kind of thing one does at the beginning of a Dáil term rather than coming to the end. I suggest a cross-party committee and some of my colleagues would also support the idea.

Deputy Gino Kenny

Mr. MacAuley said in his statement that he used his knowledge of fitness. In terms of his dad, how did that pan out in respect of a fitness regime?

Mr. Michael Darragh MacAuley

My father needed a physiotherapist like Ms McCafferty. He did not need me but I tried my best. Yes, we were sitting down and we were bringing him to the gym. I do not have a background in lung fibrosis speciality care but we went to the gym. My father was a suit and tie man and I remember him using a treadmill wearing his suit and tie. We tried to do everything we could for him and introduced him to weights. As I said, with my limited knowledge in that space, we tried to do everything we could.

What has not been mentioned here today, and I discussed this with my sister, Margaret, is the mental aspect and psychological issues associated with lung fibrosis. My sister was offered no psychological support after having been thrown this bomb in the form of lung fibrosis. My dad also had issues and definitely struggled in his later years due to a lack of supports. We did what we could with exercise and yoga in as ad hoc a fashion as possible. I know from having taught yoga to patients that a lot of them have gained a lot from it even in terms of just relaxation.

Deputy Gino Kenny

How did yoga help?

Mr. Michael Darragh MacAuley

In terms of relaxation and the breathing aspect would be very light. The yoga class is where patients are connected to a group who are in the same space as them. For years I taught patients yoga in a place on Aungier Street and with Covid my class is now mainly taught online. It is really important to get moving and try to do anything. Exercise and how to go about that is often scary for people in their later years. However, when people are told they have a lung condition they really wonder how to go about exercise and that is where speciality care is needed.

Senator Frances Black

I have learned so much today and appreciate the delegation coming in. I want to ask Mr. MacAuley about the mental health piece and Mr. Hurley might say what that is like. I imagine that there is a lot of anxiety, regardless of whether one is the person with lung disease. For a family member, anxiety comes from worrying about the person with the lung disease. I ask Mr. Hurley to comment about the impact on his mental well-being.

Mr. Robert Hurley

I struggled with it for seven months. It was only when I decided to give up work and accepted my lot that I said to myself, "I think I will get back to where I was". That was a huge step. Again, there is a mental aspect to the class. People have had transplants so one can ask them questions about side effects of the drugs, etc. I did not realise one could not bring oxygen equipment onto a plane. So there are loads of little things that one thinks one should know but one does not.

On the mental side of it, if Senator Black spoke to my wife I am sure she would find that she has taken most of the stress. Stress is a big thing. You have to avoid the stress, be selfish and concentrate on your illness. Those are the lessons that I have learned from my experience. If you are on your own in the house you should log in online and do the class, even though you might not feel like it, because the other people will give you a lift because there are always people worse off than you in any walk of life. I consider myself lucky to have that access. I never get a cold or flu and I am out in the fresh air most of the time. In the class I learn from other people, not from a physician. The class is two hours a week and I would do it five days a week if I could. I cannot stress the importance of the class. It is a big part of my life along with the drugs.

Ms Maureen O'Donnell

Mr. Hurley has said that the exercise classes provided by ILFA - this goes back to what Mr. MacAuley said - create a sense of community. Mr. MacAuley has been incredibly generous with his time, both as an advocate for us and hosting yoga classes for us as well.

On the other thing we do - this goes back to the point made about mental health - my colleague, Ms Cassidy, will comment.

Ms Nicola Cassidy

When we did a survey in 2021, we found that only 6% of patients had been referred to a psychologist at that time. That is quite shocking because a diagnosis of a life-limiting illness is an awful lot to take on. Many people have to stop working. There are issues around being able to breathe, getting oxygen and comprehending what is ahead. One thinks about one's family. There are not enough psychologists who are part of the specialist care centres. Perhaps one or two centres might have them, if that. The respiratory nurses are the gateway to care. They are amazing because in addition to doing their nursing duties, they provide psychological support. As respiratory nurses are not specifically trained in psychology, ILFA provides bursaries where they can get online training in cognitive behavioural therapy. ILFA does that because when patients reach out to their respiratory nurses in distress, the nurses have a mechanism for helping them. ILFA has delivered that for about four years at this point. We feel we should not have to do that. It should not be an extra burden on the nurses. Thankfully, they are willing to take that on but what we need are clinical psychologists.

Senator Frances Black

The briefing note contained an advanced nurse practitioner perspective from Lynn Fox.

Ms Fox noted that some patients may have to bring four cylinders of oxygen with them when attending hospital appointments. Are hospitals not allowed to give those? Why do they have to bring the oxygen units with them? Do hospitals not provide oxygen?

Ms Olive McCafferty

I can answer that. Many of the patients I presume Ms Fox spoke about arrive as outpatients. Outpatient clinics are not set up like inpatient wards, so those patients have to carry cylinders of oxygen that weigh about 2.5 kg each. Four cylinders weigh approximately 10 kg and they are already breathless. Unfortunately, outpatient clinics are not set up for oxygen delivery and that is standard. I am lucky to work in the lung transplant clinic. It is the only outpatient clinic I have ever been in that has oxygen set-up. It is new and it is the only clinic I have seen in the country that has oxygen.

Senator Frances Black

Is there a reason it is not provided?

Ms Olive McCafferty

Yes, it is due to access. To have piped oxygen in an outpatient setting is new and there might be safety issues around it and a cost. However, it is a huge burden for patients. Unfortunately, they do not only bring one cylinder. Typically, if they are on a large amount of oxygen, they might need to take several with them. Those patients need to account for every minute they will be outside the house. A cylinder will run out in one hour. If they will be gone for four hours, that means they need to take four cylinders.

An Cathaoirleach

I imagine that is a big challenge for people who are coming from Kerry to Dublin. They have to work out how much they will use and there might be delays and they might have to wait. There must be easier solutions for it.

This week is transplant week. Mr. Hurley made a point about lung transplants and it was said that 30 to 40 are done per year. If he was working, he would not be able to get the transplant. That is not down to the criteria. What did he say? Would he be deemed not to be sick enough for the transplant?

Mr. Robert Hurley

It is my understanding that the transplant system does not work like that. I had to be assessed, which involved five days of rigorous tests I had to pass to qualify. Not everyone qualifies. Everything from cancer to heart issues matter. If anything is wrong, you do not get it. Unfortunately, three years ago I had more chance of getting a lung transplant. I am in a limbo situation now with very little wriggle room. That is why, with the help of the Mater Hospital, I am being looked at on a monthly basis because if I need a transplant tomorrow I have to do those tests again to make sure I qualify.

To answer the question about why the oxygen is important, I worked for eight months and if I had to go to Marble Arch Caves, for example, which is 200 steps, I had to leave 20 minutes before everyone else because I forgot to bring the oxygen. It causes issues and without support I would be in trouble. It is a big worry to have to do those tests again. I need the oxygen to keep fit because when I meet the lung transplant section I have to be a certain weight, my bloods have to be right and be able to do the exercise. I am lighter now than I was when I ran a marathon. I have to be 94 kg to 95 kg and I was 107 kg when I in this condition. It is a continual battle for me to make it and if I do not have the oxygen or did not have the time to spend four or five hours a day working on my fitness, I would not get a transplant. I know that.

An Cathaoirleach

I will finish up the meeting. I wish Mr. Robert Hurley, Ms McAuley and all the witnesses well in their ongoing journeys. It was useful. I hope they have had the opportunity to tell their stories today. The members of the committee have all taken something away from the meeting. Some of the things they are asking for are probably budgetary. We can all go back to our respective parties and argue for changes. Members raised a number of matters we can follow up as a committee. The secretariat will be busy. There will be an opportunity when officials appear before the committee in the next few weeks for us to raise some of these questions with them.

I thank the witnesses again for advocating on behalf of the many people they represent.

The joint committee adjourned at 12.25 p.m. until 9.30 a.m. on Wednesday, 1 May 2024.