A good day?

March 10, 2011

I like it…

On Tuesday, Olivia O’Leary shared some thoughts on International Women’s Day.

Then yesterday, our new Taoiseach, Enda Kenny revealed his new Cabinet.

And, guess what?…

The Labour deputy leader, Moan Joan Burton, the party’s Finance spokesperson for the past nine years, did not get the portfolio with responsibility for public sector reform, for which she had been widely tipped. Instead, she was given Social Protection.

Also… two prominent female Labour TD’s, Roisín Shortall and Jan O’Sullivan were not promoted.

Add to that… there are fewer women in this new Cabinet than in the outgoing government.

Progress… eh?

As far as I can see, the only concession made was that a woman was appointed to the position of Attorney General…

Labour’s Máire Whelan, is the first woman to occupy the post of legal adviser to the government. Hur…ray!

Apart from all that, the good news is… this new coalition government has promised major health reform. The new Minister for Health, Dr James Reilly, is committed to developing a new universal health insurance (UHI) system which aims to end 2-tier healthcare and give everyone equal access to GP and hospital treatment based solely on medical need.

Bring it on!


A National Disgrace

October 13, 2010

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

June 27, 2010

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.


Is this a great country or what?

February 23, 2010

I phoned the insurance company this morning, as instructed, for news on my application for ‘prior approval’ for surgery.

The lady in customer services checked my file on the computer, and said… “We need 5 working days to process your application.”

I replied that the application was submitted by fax last Wednesday morning (marked URGENT) and that this was now Day 5.

I was asked to hold the line.

After a long wait while she contacted the claims department, I was told… “Sorry, there’s no update on your application.”

I, again, explained that the surgery is due to take place this Friday, that the surgeon is booked, the hospital bed is booked, the flights are booked, the hotel is booked and that I’m due to travel to Nottingham in less than 48 hours time!

A long silence ensued.

Finally, the reply came… “You could try phoning again, this afternoon.”

“When you need us, we’re there”  Grrrrrr!

With thanks to Grannymar for keeping me smiling…

SENIOR HEALTH CARE SOLUTION

So you’re a senior citizen and the government says no health care or pension for you, what do you do?

Our plan gives anyone 65 years or older a gun and 4 bullets. You are allowed to shoot 2 MPs and 2 Senior Government Officials.

Of course, this means you will be sent to prison where you will get 3 meals a day, a roof over your head, and all the health care you need! New teeth, no problem. Need glasses, great. New hip, knees, kidney, lungs, heart? All covered.

And who will be paying for all of this? The same government that just told you that you are too old for health care. Plus, because you are a prisoner, you don’t have to pay any income taxes anymore.

IS THIS A GREAT COUNTRY OR WHAT?!


About Turn

April 8, 2009

Harney has reversed her decision on the CF unit.

u-turn2Full 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


Fighting For Life

April 5, 2009

irish-war-crimes

People with cystic fibrosis are fighting a war against political negligence. After years of empty and broken promises, the Cystic Fibrosis Association of Ireland has had enough. It’s mounting a campaign, Irish War Crimes, to reverse the decision to delay the building of a new cystic fibrosis unit in Dublin. A campaign truck will travel the State over the next week and politicians will be canvassed locally and nationally to increase pressure on the Government to find funding for the unit.

At any given time there are up to 30 CF patients in St Vincent’s hospital queueing for the eight single en suite rooms.  Many CF patients are refusing to go into hospital to have lung infections treated because of the risk of cross infection. The new facility, which would have had about 30 single rooms for CF patients, had been promised for 2010 but last week it emerged that funding would not be available until 2011 at the earliest.

Seán O’Kennedy, Cystic Fibrosis Association chairman, said he made no apologies for the hard-hitting campaign. “People living with CF are fighting an ongoing war against CF but unfortunately they are also fighting a war against an Irish medical system that is totally insufficient for their needs.”

Seán added “The support from everyone, politicians on all sides of the Government, medical professionals, the general public and the media has been astounding and all are on board to wage a war against this injustice and human rights issue”.

People with CF deserve a chance at life.  They deserve proper healthcare.  They deserve to be free from the fear of cross-infection, the fear of watching their friends die. These are basic human rights.  The ultimate price of inefficiency, bureaucracy, politics, mismanagement and apathy is human lives. Twenty- five people with CF died in Ireland last year. As Orla Tinsley, leading campaigner asks, “Are human lives the new currency?”.

Source:  Irish Times online and The Cystic Association of Ireland.

The HSE recently published a HealthStat programme which aims to provide a snapshot of health services by measuring performance. In terms of CF care in Ireland, it deserves a great big fat red rating!

Red = Unsatisfactory, requiring urgent attention.


Not given the chance

March 30, 2009

We are living in a world gone backwards. If there’s one thing about the Irish government that is guaranteed to make me angry and frustrated, it’s their callous disregard for the plight of cystic fibrosis (CF) patients in this country. 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. Last week, a whole generation of CF patients was given a death sentence with the announcement that the funding for a dedicated cystic fibrosis unit, has been pulled. At the moment, CF patients must endure  appalling hospital conditions with a high risk of cross-infection, in order to get the treatment they need to stay alive. This government is reponsible for many failures within the health service but the scandal of CF care in this country, is beyond belief.

Here’s what Eithne Donnellan, Health Correspondent of the Irish Times, had to say on the subject..

HSE postpones promised new cystic fibrosis patients’ facility

A PROMISE by the Health Service Executive that a brand new building with state of the art accommodation for cystic fibrosis (CF) patients would be provided at Dublin’s St Vincent’s hospital by 2010 is not now going to be honoured, it has emerged.

The HSE has confirmed that funding for constructing the building which would have about 30 single rooms for CF patients will not be available “until 2011 at the earliest”.

Godfrey Fletcher, the chief executive of the Cystic Fibrosis Association of Ireland, said the news was a major slap in the face for patients who have long campaigned for better facilities.

CF patients are prone to picking up infections and as a result should be accommodated in single ensuite rooms. After an outcry over the lack of isolation facilities for CF patients at St Vincent’s, which is the national adult referral centre for the condition, in early 2008 the HSE came up with an interim solution. It said 14 single rooms would be provided while a new block at St Vincent’s with a total of 120 beds – about 30 of which would be for CF patients – was being built. It said it would be ready by 2010.

However, HSE replies to written questions from members of the Oireachtas Health Committee, distributed this week, show that not only has the new block been delayed, but only eight of the 14 single rooms as part of the interim solution have been delivered on.

“The HSE had intended in early 2008 that another area of the hospital could also be reconfigured to provide an additional six single rooms on an interim basis. It has not yet been possible to realise this proposal due to other pressures at the hospital which required the use of the intended area as a decant facility to enable other essential capital works,” the HSE said in its written reply. “Design work and preparation of tender documents continues in respect of the proposed new ward block . . . the HSE’s capital plan shows that capital for construction, however, would not be available until 2011 at the earliest,” it added.

Mr Fletcher said the eight single rooms provided last August were very welcome and already patients using them were recuperating much faster. But the news that there would not be money even to start the new block until 2011 had come as a great shock to his organisation, he said.

“We were under the impression that it was to be a quick-build contract to be completed by 2010.” The fact that it was not was very serious, particularly when all the promised interim beds had not even been provided, he said. He predicted his members would be “rioting on the streets” if the promised single rooms were not forthcoming.

The lack of isolation facilities at the hospital for CF patients was condemned in a 2005 report by UK consultant Dr Ronnie Pollock. It said the lack of segregation and isolation for CF patients was dangerous and there was a risk patients who picked up infections would sue. It noted that Ireland has the highest incidence of CF of all European countries and there were “also strong indications that outcomes in Ireland are worse”.

Source:  Irish Times online.

Orla Tinsley, a CF patient and campaigner, wrote in response to the latest government announcement…

Trading people’s lives for economic survival is sick and heartless

Source: Irish Times online

Our Government has failed miserably in it’s duty of care to these young citizens. Sadly, many of them will not live long enough to benefit from the dedicated unit when it is finally commissioned. When you consider the millions which have been spent on consultants’ reports which are left sitting on shelves in the HSE, it makes this scandal all the harder to swallow. Cystic fibrosis patients are fighters. They have to fight to breathe and to keep their food down and now they are fighting for a chance to live.  They don’t deserve to have that chance taken away.  It’s an absolute disgrace.

Last Friday, Joe Duffy, presenter of ‘Liveline’, dedicated his whole radio show to talking about the problems faced by CF patients.  You can listen back to the show on the link below. Be prepared to be moved.

Liveline – RTE Radio