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

6 Responses to A National Disgrace

  1. Annb says:

    I have never been able to understand the lack of political will on this issue, it makes no sense on any level. I can’t imagine the heartache of parents who have to watch their children die prematurely because of the dangerous hospital conditions. How must it be for the medical staff having to work there? Harney should be made to spend a week in one of those 6 bed wards – a good dose of reality might soften her cough!

    • Steph says:

      Annb

      I’d make her spend at least 2 weeks there 😈

      I was interested to note the following in the HSE Working Group report…

      “The cost of care for CF cannot readily be estimated for patients in Ireland which does not have a centralised cost and information structure such as exists in Northern Ireland. In countries where cost information is collected, it is evident that more than half of the costs relate to the use of specialist antibiotics. It can therefore be forecast that costs will rise steadily as the CF population ages and continues to increase and that these costs will constitute a significant cost pressure.”

      The cynic in me wonders if the cost of treatment is the real reason why this government has failed in it’s duty of care to the CF community.

      i.e. It’s more cost effective to let them die.

      I sincerely hope I’m wrong.

  2. Lily says:

    The title of this post sums up the situation.

    The adjective callous means; ‘showing or having an insensitive and cruel disregard for others’. This adjective also sums up the situation.

    Well done for consistlently highlighting health issues such as this.

    • Steph says:

      Lily

      Thanks. You’re absolutely right, this government’s treatment of the CF problem at St. Vincent’s is totally callous.

      I know only too well the conditions endured by the CF patients having spent time in similar wards. What some people may not realise, is that many CF patients have to endure numerous hospital stays EVERY year and the conditions are so bad for them at Vincent’s, they DREAD being admitted. It’s very wrong that they should be exposed to such stress. It’s also very wrong that their health is put at risk through cross-infection and lack of sleep. While lack of sleep is not life-threatening, cross-infection can be for a CF patient!

  3. Baino says:

    Iwonder why the incidence of CF is so high in Ireland, Id want to see some real research on that and a possible course of prevention if it exists. Good they’re finally building the hostpital though. So many sufferers here are looked after by family members and it’s a tough job by anyone’s standards.

    • Steph says:

      Baino

      The contract for the new unit was finally signed last Thursday. This is good news after many false dawns.

      The Cystic Fibrosis Association of Ireland has welcomed the development and says it will continue to press for interim efforts to be made to improve conditions for CF patients while the new unit is being built.

      I presume it’s the case that we are genetically pre-disposed to CF in Ireland? Perhaps someone else could fill us in some more on this?

      Here’s a link to show you what research is being done on CF in Ireland…

      http://www.cfireland.ie/articles.php/research

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: