25 October 2009


I am indeed so angry that I have decided to take action. In conscience, I can no longer remain silent. My sense of injustice has reached it’s tolerable limit. I have cried at listening to some of the stories in the last few weeks, or reading about them in the media, or on the Down Syndrome Ireland Forum website.

So today I emailed our Minister for Health and Children, and then forwarded this to my three locally elected representatives (including the “chancer” who assured himself last year that I would never vote for him – click here and then here if you are interested in the details) asking them to acknowledge my correspondence and take action on the strength of it. I have also forwarded it to the editors of four newspapers: the Irish Times, the Irish Independent, the Irish Examiner, and the Harold (simply because this paper seems to have been at the forefront of the campaign against the budget cutbacks in Crumlin).

I am not very hopeful of any feedback, and even less of any action.

But DAM IT, my anger had to be expressed.

I know that different groups have taken and continue to take different types of action to raise awareness of this intolerable situation, and try to bring about change. At the end of the day, the more of us express our concerns, in whichever form suits us best, the more chances we may have to be heard.


I let you all decide for yourself what, if anything, you may wish to do on this topic. But if you can do something, thank you.

Here is an exact copy of my email to Ms Harney:

Dear Minister Harney,

I am writing to you today as a very concerned citizen, regarding the current waiting list for heart surgery in our Lady’s Children’s Hospital, Crumlin.

I expect that you will at a minimum acknowledge receipt of this correspondence, and hopefully confirm to me your position in this regards.

First allow me to tell you a little story: I am the grandmother of Cathal, who was diagnosed at birth in March 2008 with three severe congenital heart defects. I remember thinking at the time that, had he been born in a less developed country, or in Ireland but 20 years earlier, he would not have had any chance to survive pass a few weeks. But this is Ireland in the 21st century, and Our Lady’s Children’s Hospital in Crumlin boasts some of the finest paediatric cardiac surgeons in Europe. So he was lucky! Indeed, he had his first heart surgery in April 2008, but we quickly realised he was not so “lucky”: even though he was considered a high priority case, he had to be put on a waiting list as there was no room in the Cardiac Intensive Care Unit for him to go post surgery. After two weeks of a wait, he deteriorated so much that he became critical, another child who was not as critical as him had to leave ICU, and he had his life saving surgery early one Sunday morning.

This is not the end of the story for Cathal: this surgery was only an intermediate measure, to allow him to grow stronger for his vital open heart surgery. He was finally called for it in March 2009, and until he was actually taken into theatre, there was no assurance the surgery would be carried out – again, a lack of ICU beds was the problem.

In the last few weeks, increasing reports have come into the media of so many children whose open heart surgery has been delayed because of a lack of ICU beds, that I realise, once again, that Cathal was indeed lucky earlier this year! Long term, he may require further surgery. Will his luck hold out then?

As Minister for Health and Children, you are ultimately responsible for ensuring that every person in this country, including every child, has access to the care he or she needs. So how can you justify that life saving operations cannot be performed, when the staff is available and the equipment is in place and waiting?

How can you justify that “luck” decide whether a child lives or dies?

How can you justify that Our Lady’s Children’s Hospital, being the only paediatric cardiac centre in the country and as such a Centre of Excellence – a concept you have been championing so vehemently – cannot do what it is designed to do because of a lack of ICU beds?

How can you justify that, although about 400 heart surgeries are performed there every year, and although every child in the country with a heart condition is referred to this hospital, there are only eight cardiac ICU beds?

I understand that the waiting list for heart surgery is currently over 100. How can you justify putting the life of these 100 or so children at risk? The decision to operate on someone’s heart is never taken lightly, and if the consultants decide on it, it must be done.

How can you justify the mental and emotional anguish this is causing parents and other family members?

And if you wish to bring it back to budgets and financials issues, how can you justify the mismanagement of public finances these delays in treatment are causing the state? Because, in the long term, the financial cost to the state of treating increasingly sick children is going to grow. My taxes are paying for this, and I much prefer them to be used for the funding of surgery of these children now, that the extra funding of additional treatment in the future, should the majority of these children be “lucky” enough to survive.

Minister, you have been in your current position for over five years. You have had the will to effect a lot of changes during this time. Do you now have the will to ensure that the lives of children are preserved? If you have, please communicate to me, as a very concerned citizen and to the country at large that, within the next few weeks, cardiac ICU beds will be made available in Crumlin. Space for these can be found within the hospital itself; Equipment and machinery can be purchased on a priority basis as soon as funds are made available, and the extra staff recruited by simply lifting the embargo on recruitment for this particular instance. If there is a will, there is a way.

I understand that more cardiac ICU beds will be available in 18 months time. This is 18 months too late! So please answer this: do you have the will to effect a change now? If not, your position as Minister for Health and Children is no longer tenable, and you are expected to step down and let someone else, who has the will and competence, take your place.

Finally, consider this: if your own child, or a niece or nephew, was on the waiting list, would you not do all in your power to ensure they live? I am asking nothing less here.

I am sending you a printed copy of this email by registered post. As an elected representative, it is your duty to acknowledge this correspondence and reply to it.

Yours respectfully,

Name and address.

Now let’s wait and see.


Cheri said...

Ohhh I hope you get a speedy response and speedy action to this. I did not know there were only 8 beds, are you kidding me....that is just awful! Wow, change needs to happen immediately. I hope the local papers pick up your letter and publish it!

My name is Sarah said...

This is Joyce. Awesome letter to a horrific situation. I hope you get a response and soon. I think so about Cathal now too. I did not realize the situation of the ICU beds. Indeed he is a lucky little guy, but as you say should luck be involved? I think not. Oh I hope a change comes soon. When I am storming along trying to make change, I always think of the bumper sticker I see from time to time that reads "Quiet women rarely make history."

Don Crane said...

I have learned you never get between a grandparent and their grandbabies...especially ones with Down Syndrome. In fact, if I were the minister in question, I would be taking very careful attention to you...reprocussion of a motivated grandparents can and will rattle any politician. Unfortunately, I am an American and cannot make a call in your support. (Side note:It looks as if we are going to follow your countries lead in health care as well...)Take Care and we will be praying for you.

Lisamaree said...

Ah nan! Please god something happens to tip the balance on this government and we get a chance to ditch them before 2012! xx