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.

Not given the chance

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