Dear Joe

Three years ago, cystic fibrosis (CF) campaigner Anita Slowey first contacted Joe Duffy on Liveline to stress the need for a purpose-built CF unit at St. Vincent’s Hospital* which would provide en-suite single rooms, to prevent cross-infection from other patients.

In October 2010, having endured a further 3 years of broken promises from the HSE, Anita again emailed Liveline to describe the hospital conditions that she was still in. Her deeply moving email was highly successful in drawing attention to the plight of CF sufferers in Ireland.

Anita wanted to be a journalist, she lived as normal a life as she could but the odds were stacked against her. She died in St. Vincent’s Hospital last Monday, aged just 24 years.

The conditions in which Anita was treated, directly contributed to her death. Cross-infection and multiple infections resulted in the bugs that caused the infections in her body, becoming stronger and harder to fight.

Out of the hundreds of antibiotics used to treat her disease, she ended up only sensitive to one. This is as a direct result of being exposed to other patients and their germs.

The HSE’s abject failure to provide proper isolation facilities, directly cost Anita her life. Yet another failure of our grossly mis-managed health service yet no-one in the HSE will ever be held accountable.

The contract to build a €20m specialised CF unit at St Vincent’s Hospital, with en-suite single rooms for 34 patients, was finally signed last October and the promised unit is due to be completed in April 2012.

While this is too late for Anita, her brave decision to campaign on behalf of CF patients, has ensured that others will not have to suffer the conditions which she endured.

May she rest in peace.

Below is an extract of the email that Anita read out on ‘Liveline’ last year, which has now been put to a piece of music that she loved…

*St. Vincent’s University Hospital, Dublin  is the national referral centre for adult patients with cystic fibrosis.

A National Disgrace

I can’t remember when I last felt so passionate about something.

I don’t have cystic fibrosis (CF) nor am I related to someone who has, but that hasn’t stopped me feeling very angry about the lack of government commitment to the cystic fibrosis community in Ireland. While the Celtic Tiger roared in this country, young adult CF patients were left to suffer in conditions which continue to be described as dangerously inadequate. Many have died prematurely because of the failure of our government to provide them with the care and facilities needed. The plight of the adult cystic fibrosis sufferers in Ireland, is a national disgrace.

Ireland has the highest incidence of cystic fibrosis in the world and should have facilities and services that reflect this unenviable position. Instead of being a world leader in CF care, we fall way below the European recommended standards. The average life expectancy for a CF person in Ireland is the lowest average in a first world country.

The needs of the CF community are straight forward. They need funding to be provided for a dedicated cystic fibrosis unit with fully-trained staff who are knowledgeable about the disease; they need isolation in en-suite rooms where they don’t have to worry about the risk of cross-infection; but perhaps most of all, they need reassurance that when they require hospital care, they will be provided with the means to survive. Is this not the right of every citizen of Ireland?

Cystic fibrosis sufferers are some of the pluckiest people you will ever meet. Why? Because they have been born with a life-threatening inherited condition which leaves them fighting to breathe. CF primarily affects the lungs and the digestive system and becomes more severe with age. They are very susceptible to serious infection and as a result, they require frequent hospitalizations for treatment.

In other countries, CF in-patients are treated in single en-suite rooms to reduce the risk of cross-infection. In Ireland, adult CF sufferers risk potentially life-threatening infections every time they are admitted to hospital as we do not have a purpose-built unit in which to isolate them from other patients, as well as from each other. CF patients are not supposed to interact because of the risk of cross infection.

The plight of adult cystic fibrosis sufferers was laid bare on Liveline last week as outrage mounted about the appalling services provided for those affected. One CF patient after another and their relatives, described the appalling conditions to which they are subjected while waiting for a specialist unit to open at St. Vincent’s Hospital in Dublin, the national adult referral centre for CF patients in Ireland. A common thread to all the stories was that while CF patients are receiving excellent medical and nursing care at St. Vincent’s hospital, the conditions are far from ideal. They are being admitted to 6-bed wards where the nurses are not specifically trained in CF care and where they are exposed to cross-infection and constant exhaustion from being in a shared room. Rest and sleep are paramount when fighting a serious chest infection.

An independent review of CF services in Ireland by Dr R.M. Pollock, published in 2005, found that most adults with CF were being treated in facilities that were understaffed and dangerous. The Health Services Executive (HSE) responded by establishing a multidisciplinary Working Group to undertake a wide-ranging review of the current infrastructure for CF in Ireland. It took the Working Group until 2009 to publish it’s own Report on Services for People with Cystic Fibrosis in Ireland which simply endorsed many aspects of the Pollock Report.

Five long years have now passed since the conditions for CF patients were described as dangerously inadequate and very little has changed. Is it any wonder that they are demoralised about their plight and cynical about the many false promises from the HSE?

Following the public outcry last week, it was announced that building work on the long-delayed cystic fibrosis unit at St Vincent’s Hospital, is expected to start next Monday following the signing of the contract on Friday. The unit, which will be in a five-storey, 100-bed hospital block of which two storeys and 30-35 beds in individual ensuite units, will be developed exclusively for cystic fibrosis sufferers. It will be mid-2012 at least before the doors are opened. I won’t believe it until I see it happen.

Meanwhile, the wait goes on…

Further information:  The Cystic Fibrosis Association

It’s Just Not Fair

It is a disgrace and a source of national shame that in 2010, in the country with the highest rate of cystic fibrosis (CF) in the world, we still do not have a purpose-built adult CF unit. An independent review of CF services in Ireland by Dr R.M. Pollock, published in 2005, found that most adults with CF were being treated in facilities that were dangerously inadequate. In reality, very little has changed since then for CF inpatients. The average life expectancy for a CF person in Ireland is a full 10 years lower than in Britain or the US, largely because of the failure to provide specially trained staff and sterile, en-suite hospital facilities. It’s just not fair that people with CF should be spending so much of their already short lives waiting for the most basic of services.

St Vincent’s Hospital, Dublin is the national adult referral centre for CF patients in Ireland. Last year, the HSE said that it didn’t have the money to go ahead with building a special 120 bed facility, with 30 en-suite rooms to cater for these patients. The public outcry that resulted, led our Minister for Health to declare that an alternative funding approach involving builders and banks, could deliver the facility as promised. This latest hold-up has come about as a result of a failure on the part of the Department to award a tender to construct the €40 million unit.

Orla Tinsley is a young woman with cystic fibrosis. For the past five years, she has campaigned vigorously for the provision of a dedicated CF unit. While receiving urgent medical treatment at St. Vincent’s hospital last week, she wrote the article below about her frustration that the designated site for the new facility remains empty…

“OPINION: The news that there has been further delay in the cystic fibrosis unit at St Vincent’s hospital in Dublin is disheartening, but hardly surprising, writes ORLA TINSLEY

Five years ago this month, my first article was published in this newspaper. I wrote about being an 18-year-old with cystic fibrosis treated in the national referral centre, St Vincent’s hospital. It was my first experience of sleeping in a room with senile and confused women who coughed, pooped and died in the room in which I slept.

I didn’t understand how the rules on cystic fibrosis care could change so much from a children’s hospital to an adult hospital. As a child I was not allowed to share a room with someone who had cystic fibrosis because of cross-infection.

In Vincent’s, sharing a room with another CF patient was a common occurrence until two years ago because there was no other space. I shared a room with a girl who also had CF and we became great friends over the summer months we were in there. We stood outside the hospital on the June bank holiday eating cool-pops and watching the mini- marathon go by. A month and a half later she was dead.

It was the first time I fully realised that CF is something you cannot control, although it takes a while to accept.

I ran the mini-marathon two weeks ago and finished in high spirits. When I sprinted past Vincent’s, I thought briefly of that day and was glad to be running. The next day I flew to Barcelona and lay on the beach, relaxing for five days. I had gotten over the previous rough summer of spontaneous lung bleeds that halted my life and made it impossible to plan anything. I had gotten over the collapsed lung last year and I started work, like any 23-year- old, which feels so great.

Then I got some shoulder pain: my lung had collapsed again. Had I trained too hard or done something wrong? My consultant said it was just one of those things that happens with cystic fibrosis.

Admitted to Vincent’s a week ago, I was put on 100 per cent oxygen to try and reinflate my lung and given painkillers. My medical team were incredible and I got a bed immediately.

For the first two days I shared a room with five other women on a ward where the staff did not specialise in cystic fibrosis. I was exhausted and filled with painkillers; I was not as aware as I needed to be. When I had to go for an X-ray, the nurse looking after me said I didn’t need oxygen to go along with my wheelchair. My oxygen saturations were good and it was a short trip.

I explained she was wrong, the oxygen was flushing the nitrogen oxide out and encouraging the lung to reinflate. We argued but I left without oxygen. I waited there without oxygen among patients who were coughing.

The ward sister apologised that I had been left without oxygen.

The distressing element of this scenario is that if I was in a unit with nurses specially trained in CF, this would not have happened.

I am just one person with cystic fibrosis and each person’s story is so individual. When I am not sick I work as hard as I can and I love my life. I know some day that that will end, things will get slower, I will spend more time lying in beds with various tubes.

I will be unable permanently to make that choice to get up myself and walk away from a screaming room-mate or a dying woman or drag all my medical equipment and tubing with me to sleep in the corridor, as I have done on previous occasions.

Not being able to access a single en-suite room when I needed one was not surprising, but it was frustrating. The lack of sincerity in the Government commitment to our dedicated CF unit is disheartening and degrading to the 1,300 people living with CF on this island.

There has also been no commitment to the number of beds that would be specifically ring-fenced for people with cystic fibrosis in the 100-bed unit that will treat many other illnesses.

We need 34 beds to deal with the daily intake of patients with cystic fibrosis. These beds cannot, as it has been suggested by those in charge, be given to other patients if people with cystic fibrosis are not there to take them.

We need cleanliness and exclusivity. We’re not asking for gold-plated oxygen tanks, we’re just asking those in power to help us stay alive in rooms that comply with international standards.

This litany of broken promises is embarrassing for Ireland. When I talk to patients or parents of young children abroad they are continuously shocked by the standard of care for CF patients here.

They have offered money to sort out our Irish mess.

I do not want to die in our Irish mess.

The eight single en-suite rooms at the national referral centre are not enough. We deserve single en-suite rooms when we present at hospital with a mild exacerbation or a painful, collapsed lung. It is the only way to get full quality treatment for most patients with multi-faceted cystic fibrosis.

People waiting on the transplant list deserve to be in single en-suite cubicles.

This time coming into hospital, I didn’t have to go through AE, but I will have to again. This time, no one used the room I slept in as a toilet or had MRSA or screamed throughout the night, forcing me to sleep in the corridor.

But it will happen again and is happening to other people with cystic fibrosis around Ireland who are exposed to life-threatening cross-infection as you read this.

The Pollack report was published in 2005. It  In reality, very little has changed since then for CF inpatients. When building eventually starts on the unit, it will take 14 months to complete.

We live in hope with a heavy dollop of cynicism, as always.

I walked by the site in the sunshine the other day during physiotherapy. It sits there, decanted and waiting, just like the rest of us.

If there’s such a thing as campaigners fatigue, I may be experiencing it. I have been writing the same thing for five years. It’s a depressing thought that I will be doing it for another five”.

I salute Orla Tinsley for writing this courageous article. It’s a damning indictment of our government’s appalling lack of commitment to CF patients who continue to be exposed to life-threatening cross-infection. The Irish political system is rotten to the core if it can allow this issue to continue. It’s just not fair!

Information Source: The Irish Times 25/06/10 and 26/o6/10 and The Cystic Fibrosis Association of Ireland.

About Turn

Harney has reversed her decision on the CF unit.

Full credit goes to the Cystic Fibrosis Association of Ireland (CFAI) for launching a major campaign to get the Minister for Health to honour her commitment to provide isolation rooms for CF patients. However, it is still too early to celebrate this victory as the building of the unit is dependent on a ‘build now, pay later‘ funding scheme which may yet prevent it from going ahead. It ain’t over ’til the fat lady sings!

The Minister for Health and the HSE promised to build by 2010, a new 120-bed facility with 30 en suite rooms for CF patients, at St Vincent’s hospital in Dublin. This €40 million unit will also have isolation facilities for patients with other conditions. Last month, following a reduction of 26 per cent in its capital budget, the HSE announced it didn’t have the funds to go ahead and that construction would be delayed until 2011 at the earliest. The uproar that ensued following this announcement has embarrassed Harney into making a u-turn on this decision and yesterday, she announced an alternative plan to fund this vital facility. She has proposed a scheme whereby payment will be made at the end of the construction phase. Builders will be asked to tender for the project on the basis that they would not be paid until the facility is completed, in about two years’ time. This is a different way of funding this project as it involves the construction company financing the development up to the final phase of construction.

The Government, the Minister for Health and the HSE have all failed in their duty of care to Irish people with CF. How a nation treats it’s most vulnerable citizens, is what determines it’s right to call itself civilised. Ireland has been found seriously wanting in this regard. I refuse to applaud Mary Harney for her ‘innovative’ plan to solve the CF accommodation crisis. She could have proposed this unusual funding plan years ago and saved a great deal of heartache in the process. But then it’s not about saving lives, is it? It’s all about saving face.

Cystic Fibrosis Scandal

Source: Irish Times

Need I Say More?

Orla Tinsley suffers from cystic fibrosis. Earlier this year, Orla received a People of The Year award for her campaigning in the Irish Times on behalf of cystic fibrosis sufferers.

Ireland has the highest incidence of CF in the world and to it’s shame, it can also claim to have the highest mortality rate and the lowest life expectancy for CF sufferers. The critical issue here is the limited availability of suitable isolation facilities in Irish hospitals. For optimum management of cystic fibrosis, patients require isolation in individual en-suite rooms to prevent cross-infection occurring but CF patients are being denied this opportunity. Instead, these vulnerable patients must present themselves to A&E where they are exposed to high risk infections while they await admission to a hospital bed. They are then transferred to a mixed ward to be nursed alongside mainly geriatric patients with a variety of illnesses. This practice beggars belief. The high rate of MRSA infection in Ireland has done little to ease the plight of the CF population. Not only is MRSA a constant threat to immuno-compromised CF patients, it’s prevalence has meant that the extremely limited supply of isolation rooms have instead been prioritised for MRSA infected patients.

I’ve written about Orla before to document the appalling hospital conditions which she and many other cystic fibrosis patients must endure.  CF patients have been waiting for more than a decade to have a dedicated CF unit built at St. Vincent’s Hospital in Dublin and they are quite literally sick waiting.

Here is her account of her recent visit to hospital as published in today’s Irish Times.

“Dear diary: It’s Tuesday and I’m back in hospital for another blast of treatment for my cystic fibrosis, writes Orla Tinsley

I … ENTER St Vincent’s hospital in Dublin as I need treatment for an exacerbation of my cystic fibrosis. I have two options. I can go to A&E and wait on a trolley for a bed, or I can go home and wait on a waiting list.

Although my home is safer, I choose the A&E. I can’t continue in college or do the things I want to do if I am unwell, so I wait on a trolley.

A special type of needle, called a gripper, is used by most CF patients who have frequent infections. I need one now, but no one in A&E is qualified to put it in. A nurse from the designated CF eight-bed ward is called and comes down to put it in for me.

I am on a trolley in A&E and this procedure requires a certain amount of exposure. The porters are nice, the nurses are nice – they are both busy.

We ask if there is somewhere private for me to get my needle put in. There is nowhere. The specialised nurse and I think of what to do, she decides to take me out of A&E to try and find a room in the main hospital.

The A&E nurse stops us.

For a procedure that requires the utmost cleanliness, she says we can use the bathroom. The toilet in a busy, infection-ridden A&E is open to us.

We leave the department for the main hospital. It is after hours, treatment rooms are closed and wards pose a cross-infection risk. We eventually find an open door in a room that we know is clean and use it.

I go back to my trolley in A&E wishing I could have slept in that room. In A&E a nurse comes to give me my nebuliser through an O2 cylinder. I tell her that there are nebulising sets on the CF ward; if she could just ring them up she could get one. I’m sorry I didn’t bring my own, but she doesn’t understand what I’m saying. I explain twice more, then a porter who had been listening steps in. He tells her to leave it and goes up to the ward to get it.

There is no plug near the trolley I am on and so I have to wait before I can have it. I get moved to another square of the wall so that I can take my nebuliser. I then get moved into a curtained area for the night, and I am relieved.

The next day I am moved out to another curtained area. The nurse minding me is nice but busy, and late giving me one of my drugs. I ask her three times over the next few hours. Being on this drug long-term can affect kidney function, so the morning time is the best time to have it.

I use my mobile to call my CF nurse, who calls the A&E department and asks them to give me the drug. I still do not get it. I try calling my CF nurse again, but then my battery dies.

I walk up to their office and they call again, frustrated for me. They should not have to sort this out. I go back to A&E and get it.

Late that night I get a bed on the semi-private ward. It’s Wednesday night. I am in a room with a young girl, a lady with cancer and two elderly patients.

I am aware from the time my aunt was dying with cancer that I am not allowed to be around immune-suppressed cancer patients. Over the next few days I find out that the lady is in fact immune suppressed.

I am a danger to her, and I don’t think it’s a good thing to tell her.

One night the breathing of the elderly lady in the bed beside me gets worse. The next day her family are by her bedside and they keep apologising to me that it’s happening in my room. They are so, so sorry.

I tell them please, it’s not your fault. And I feel guilty that they feel so bad about it as they watch their mother die.

Another woman comes in, a new patient replacing the young girl. She is coughing violently, but seems pretty happy. She makes a phone call to a friend to tell her that at least she doesn’t have double pneumonia, like her neighbour, she only has pneumonia.

I feel the room shrinking.

She tells her friend on the end of the line: “Don’t get the sliced melon from Marks and Spencer . . . It’s right inside the door, I want the diced one,” she giggles down the line.

At that same moment a relative behind the curtain of the lady beside me says: “Is she gone? Yeah? Oh God.”

The other woman continues to talk on her phone. After the lady passes away her body stays in the room for three hours.

That night, another lady with cancer moves into the bed beside me. Her temperature has gone up so she had to come in. Both ladies with cancer are so much fun to be in a room with.

The lady who had just moved in is only starting to lose her hair, the other lady had already lost hers. She wants a “Posh Becks” hairstyle, like Victoria and David Beckham when her hair grows back. We giggle at the thought.

At every opportunity I leave the room to talk to the nurse about trying to get moved. Bed management are aware of the situation, but there is nowhere to move any of us.

I talk to the ladies about it and tell them I might write about it. They are meant to be in isolation, but they are not. I am a risk to them, and then there is the lady with pneumonia in the corner, who poses a risk to us all.

I try to sleep with a mask to protect myself and the people in the room, but it is sweaty and a bit restricting for breathing.

On Monday I am given the option of moving to a two-bedded room on the same ward. I accept and find myself in a room with one the kindest, most vivacious elderly ladies I have ever met. She is chatty, but knows when to leave me alone. She is a pleasure to share with, but even our camaraderie can’t disguise our different needs.

As she is unable to leave her bed, she needs the commode two or three times during the night. She is the nicest woman in the universe, but my cough is already making it difficult for me to sleep.

The rattle of the commode at 12.30am, 4.00am and 6.30am rips into my ability to rest. There is a smell too. It is not her fault, but I cannot sleep properly.

One day she is complaining of discomfort and extra swelling in her legs. I only become aware of it because this woman is not a typical patient.

She never complains, even though she has a chest drain in, which makes it impossible for her to walk around. That morning she complains a lot about her feet.

It is three hours at least since someone has been at her chest drain and I notice that it is clamped. I tell the nurse, he comes in straight away and deals with it. I ask a medical person about it later – chest drains should never be clamped unless they are about to be removed.

She feels better, we’re getting on well, but I’m still not sleeping well. We keep in good spirits chatting, and she tells me about how her handbag was taken while she was in hospital. Luckily her daughter was with her to cancel her cards and keep her afloat.

It wasn’t her bank card so much, but being without her reading glasses really upset her. She was told a member of security would come back to investigate the situation, but they didn’t.

There are 28 cystic fibrosis patients in as I write this, and there are eight single en-suite beds. The beds are allocated on the advice of the microbiologist. There is a long list to get into them. The eight single en-suite beds are on a new ward, but there are also general beds on that ward too for patients who do not have cystic fibrosis.

In February this year former junior minister for health Pat Gallagher said 14 single en-suite rooms would be available by the end of the summer for CF patients. I remember being told early this year that there would be six more, in another area in the hospital.

I ask a person in officialdom what is going to happen with the six other beds we desperately need until our unit comes at the end of 2010. This person tells me that there are no plans for six beds, that they have heard nothing about it. They have no funding; they have other things to sort out first. They want to see how the eight single rooms work.

Meanwhile, the winter months are coming, the number of cystic fibrosis patients needing inpatient treatment will rise. Some will refuse to go into hospital and risk damaging themselves, some will come to A&E, and risk damaging themselves.

Others can be treated at home, but if that doesn’t work they will have to come in anyway. Those who are not in the eight beds will continue enduring cross-infection, exhaustion and fear every time they are in hospital.

We will all think of the recession and what that means for us. We will comment to one another that 2010 seems like a lifetime away, and feel sick to our stomach that some of the 1,100 people in Ireland with cystic fibrosis will not see it.”

This article is published courtesy of the Irish Times online.

Life or Death

There’s been a lot of hype recently in Ireland about the appallingly inadequate hospital services for adult patients with cystic fibrosis (CF), and rightly so. Put simply, our Government’s failure to provide a dedicated CF unit in this country, is costing lives.

The critical issue here is the limited availability of suitable isolation facilities. For optimum management of cystic fibrosis, patients require isolation in individual en-suite rooms to prevent cross-infection occurring but CF patients are being denied this opportunity. Instead, these vulnerable patients must present themselves to A&E where they are exposed to high risk infections while they await admission to a hospital bed. They are then transferred to a mixed ward to be nursed alongside mainly geriatric patients with a variety of illnesses. This practice beggars belief. The high rate of MRSA infection in Ireland has done little to ease the plight of the CF population. Not only is MRSA a constant threat to immuno-compromised CF patients, it’s prevalence has meant that the extremely limited supply of isolation rooms have instead been prioritised for MRSA infected patients.

When I was first diagnosed with an MRSA infection following surgery, I was hurriedly moved out of a general ward into an en-suite isolation room to be barrier nursed while receiving intensive IV treatment. I felt like vermin and in reality, I represented a high risk to those patients whose immune systems are compromised by disease or treatment. I was eventually discharged home on oral antibiotics but the infection recurred and I was re-admitted through A&E for further IV treatment in a single isolation room. I was again allowed home on oral antibiotics but the infection worsened and I soon had to come back into the hospital. On this occasion I was transferred from A&E to the MRSA isolation unit where all patients with MRSA are nursed together. This unit was full of elderly patients, it was poorly ventilated and I felt distinctly uncomfortable with the high risk of cross-infection there. During my stay, I would spend the evenings sitting outside the door to the unit to get fresh air and to escape the blaring televisions. None of the staff ever objected to this practice. As my health improved, I soon ventured further afield to use the hospital coffee bar as a venue for meeting visitors. Nobody advised me otherwise and indeed, I often met doctors I knew while on my travels and they’d stop for a friendly chat. The point here is that as a carrier of MRSA, my outings put other patients at significant risk of cross-infection. This stark reality was brought home to me when listening to the recent public debate on CF issues. At the time, my only concern was self-preservation but now I realise that I should never have been allowed to wander the hospital corridors. If anyone is to blame, it is the hospital authorities for their slack policy of infection control.

Ireland has the highest incidence of CF in the world and yet we have the highest mortality rate and lowest life expectancy. CF patients have been waiting for more than a decade for a dedicated CF unit to be built and they are quite literally, sick waiting. Our Government has failed miserably in it’s duty of care to these young citizens. Lives are being shortened and young people are dying as a consequence of our inadequate hospital services. This really is a matter of life or death.

Sick Waiting

What is about politicians – I don’t understand them? In the run up to the election Mary Harney was pushing private healthcare with unseemly haste. A solution to end the Nurses’ work-to-rule was found in double quick time just ahead of polling day. Even Bertie Ahern rushed off to dissolve the 29th Dail in the early hours of a Sunday morning. And yet, here we are post-election in ‘limbo land’ and nobody seems in any hurry to do anything. The country is ‘on-hold’ while the politicians try to decide who really won the election! Fianna Fail don’t know who to get into bed with next. Fine Gael seem to want to get into bed with anyone and everyone.

I’ll tell you who’s bed they should get into. I’d like to see them take Orla Tinsley’s place the next time she is hospitalised for treatment of her cystic fibrosis. Her life is quite literally in politicians’ hands. Two days before polling day she made an impassioned appeal (Irish Times 22/05/2007) to the government to allow her the best shot at life. Orla is 20. Each time she’s hospitalised she has to to endure appalling hospital conditions in order to get the treatment she needs to stay alive. The average life expectancy for a person with cystic fibrosis in Ireland is 21. In Northern Ireland, it’s 33 and in Britain and the US, it’s longer again. Ireland has the highest incidence of CF in the world and yet those suffering from the disease here have to fight to stay alive in the shambles that is our Health Service.

Orla is just one of many, many people who deserve a better shot at life. Get a move on Bertie – there’s no time to waste! It’s time for action. You’ve been given another chance at life – some people don’t have that choice you know.