I AM ANGRY, VERY ANGRY!

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.

Because CHILDREN’S LIVES ARE AT RISK HERE!

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.

It’s a Protest

And it was my first. Yes, it’s true, I have never taken part in a public protest, until yesterday.

Hard to believe, considering I grew up in what I can safely term a “militant” country, and spent my teenage years in a post-1968 Paris. My parents and I moved back to Paris the Christmas following what has become known in France as “les Evénements de mai soizante-huit” (can be translated as “the Events of May 68”, as if no other “Events” happened around the world that year!... Typical French arrogance!). Throughout my secondary schooling in the 1970’s it was more than common place for pupils to join university students in a “strike” and march through the capital... by that time, most of the street cobble stones of the city, that has not been removed during May 68 to be thrown against the police, had been tarred over very thickly. Still I did not join in. I can’t say I always stayed safely in the classroom or the school library to study; I did my fair share of chatting away for hours in the school yard and enjoying the impromptu free time. I think that I do not like being roped into a conventional way of thinking, I do not appreciate my thinking being done for me, ideas imposed on my little brain. I have never joined a political party because I see more what any party could try to impose on me rather than what I could bring to it.

If you ask me to send a letter or an email, I will do so "my way", with my wording. But no protesting or marching ever! No militancy for me. No following the herd.

A few weeks ago, I did think of taking part in a march, the silent one, in support and memory of the ten’s of thousands of children who were abused in Irish Institutions. But I did not have enough personal conviction to publicly give such a reason to cancel a work meeting – had it been at a weekend, or an evening, I would have been there.

Yesterday was a Saturday. And yesterday, two simultaneous protests took place in Dublin, against the budget cuts to Our Lady’s Children Hospital in Crumlin that have resulted in ward and theatre closures. Enough is enough, and though I do not think my presence has made much difference, I was one extra person there, and everyone that afternoon added up to a nice little noisy crowd.

Several things struck me:

As I had previously seen on TV of similar protests, they were parents and children of course. But they were also older people, grandparents, showing that whole families are affected and concerned by this issue.

All were very well mannered. Yet the underlying level of anger was palpable. Some held posters made by the organisers, some had made their own. But the messages and the mood told the same story: this is an intolerable situation. What are € 9.6m when our bankers are being rescued to the tune of Billions? Where is the reassurance that no child will suffer at the hands of the state – a reassurance voiced again and again only a few weeks ago, following the Ryan Report?

The level of support from the passing cars was incredible. I was there for well over an hour, and I think that almost every driver that passed beeped his or her car horn. Even the ambulance drivers turned on there sirens for a couple of seconds as they went slowly by. I interpret this as a total disgust from the “general” public toward the way our current government is handling this issue.

Of course, they were the odd posters from what I would call more extreme political parties, and at least one trade union. But over all the people who were there seemed to be either from official parents groupings mainly concerned with the welfare of their children’s hospital, or simply (and mainly) parents, and grandparents, worried for the very lives of their children.

And the whole situation has reinforced a thought I have had ever since I first heard of the ward closures: “Thank God Cathal had the surgery last March, before budget cuts starting biting. Otherwise...” It does not bear thinking, and my heart goes to those children who are waiting for surgery, and their families.

It was an interesting experience, and another “first” I can put down to Cathal’s influence on me. This child is a major cause of challenge for me, and changes in me. I am so grateful for him being the way he is!




And to top it all off, a teddy with my personalised message is waiting to greet our TD’s and Senators at the gates of the Dial. If only one of them reads it, it is worth it.



And I am not militant? Who said?

Please, oh please don’t!

I amended my last post with an afterthought, a little tongue-in-cheek to lift the mood. And I need to lift my mood. Because I have been feeling a bit down these last few weeks. Is it the reactions to the emotional trauma we went through two and three months ago? Is it the reality of the full blown harshness of life, as I witnessed it around me when Cathal was in hospital, just hitting me now?

I know that the revelations of the Ryan Commission on Child Abuse at the hand of so called religious institutions still have me reeling. The results of the local and European elections 10 days ago are also for me a symptom that there has been something very wrong with this country in the last few years, and that at last our eyes are opening.

But what a mess! What a sorry depressing mess!

Then today I read Cathal’s Mammy’s post about Crumlin Hospital. It stirred up all those emotions again that I felt when we were there, when I used to join her and the Dad by Cathal’s side, or by the door of ICU, in that lift lobby she describes. I suppose we all need to go through those feelings again until we can exorcise them and lay them to rest, finally.

But what has me really, deeply angry, and sad, is the situation in Crumlin Hospital. Please go and read her post for full details. I do not have the heart to go through it again here. And she says it all so eloquently – and I am not biased here, I swear!

I have seen the situation deteriorating over the last year and half. Not just in Crumlin, but across all the hospitals. My job takes me into them on a regular basis. My role and that of my colleagues is one of support to the Irish Voluntary Hospitals ,and Crumlin Hospital is one of those places where I have learned to locate the back doors, and walk the corridors more than a year before Cathal was rushed there the day he was born.

How can our Minister for Health say that no front-line services will be affected by the cuts? How can she affirm that no patient will suffer because of the slashing in funding? Every day I witness the palpable panic of those working in the health sector. How on earth can they keep providing the same level of service, keep on saving lives, when they have so little funds that anyone who is out sick, or on maternity leave, or on a (more than well deserved) holiday, is not even replaced? How they keep on working, and with the grace and patience they show patients and their families, is beyond me. And I know what I am talking about; I talk to these incredible people almost every day.

The thing is, our health system is becoming caught in a catch 22 situation. It’s simple logic: the more people become unemployed thanks to the collapse of our economy, the less contributions to the 2% Health Levy (which goes straight from our pay-package to the Department for Health, via the Revenue Commissioners) – hence the lesser the revenue for the hospitals. At the same time, the more people become unemployed, the lesser number of people maintaining their private medical insurance (which has often been paid by employers), the greater the numbers depending on the public health system. Hence the more resource needed, but with less money available. See what I mean? Catch-Twenty-Two!

If this is not depressing, I don’t know what is.

But there is something we can do. Actually two things, simple, maybe even over-simplistic, but it can add to the pressure on our current government. And maybe, just maybe, get them to reconsider the budget cuts imposed on Crumlin Hospital. After all, this is THE only cardiac paediatric centre in Ireland, one of those “Centres of Excellence” so dear to Ms. Harney and Prof. Drumm.

So to say to the powers that be “Please, oh please don’t put the lives of our children at risk” you can:

- One, sign the on-line petition to save Crumlin Hospital, it takes only a minute (don’t mind the donation request that follows your petition, once you click, after your name, you’re registered)
- Two, email all our Ministers, TD’s, Senators, and let them how you feel about these cut-backs.

Every extra voice adds up, until the whisper becomes a roar of dissent.

I don’t feel any better after typing this post. But at least, my conscience is clear, I know I am not putting the lives of children at risk…




By the way, has any one yet realised that our Minister for Health has no mandate anymore? The political party she is supposed to represent in this coalition government has been dissolved, hasn’t it? Will it not cease to exist in a few weeks? So what is she still doing at the helm of our health system? I suppose no one is willing to take on this “burning hot potato”. So better leave her there, isn’t that right? Typical Irish answer to an Irish problem…? It would be funny if it was not so tragic!

Bureaucratic Wastage

This could be also called “Mad Update on the Update”.


We are told that we live beyond our means.

That the State is short of money, that the Government needs to save everywhere it can.

To this effect, last October, our new Finance Minister, supported by various colleagues, proposed a range of cutbacks for the next year. Following on the announcement made regarding the Disability Allowance, I had taken my cue from Down Syndrome Ireland and joined in the protest with a volley of emails. As we know, the Government did a somersault on this proposal, it was rescinded, things went back to where they were. In short, the matter was closed, as if it never happened – except for the psychological impact left with people with disability and their families, but this is another story…

Image my surprise when, late last week, a full 7 weeks after my original email, I received an email from the office of our Minister for Social & Family Affairs.

Quote:

“Mary Hanafin T.D. Minister for Social & Family Affairs has asked me to acknowledge receipt of your recent e-mail regarding Disability Allowance and to say that the matter is receiving attention.”

Unquote.

… OKAYYYYY. A bit late, wouldn’t you say?

Has the proposal not been reversed?

Imagine my surprise when I got home this evening and found in my letterbox a note from… yes, you guessed right: the same minister’s office! And it told me the following:

Quote

“Mary Hanafin T.D. Minister for Social & Family Affairs has asked me to acknowledge receipt of your recent e-mail, which was forwarded to her by Brian Lenihan T.D. Minister for Finance, regarding Disability Allowance and to say that the matter is receiving attention.”

Unquote.

OOOOKAYYYYY! Again!

Let’s think a second.

Someone found my email to Mary, and took the time to respond, not quite a mail shot, my full name is on it. Say that took about 3 minutes of a civil servant’s time.

Then someone found my email to Brian and passed it on to Mary – let’s say another 1 minute.

Then someone in Mary’s office personalised the standard answer, printed it (using headed paper, include the cost of that page), put it in an envelop (include the cost of the envelop), franked it (54 cent, as it’s 1 cent cheaper if franked rather than with an actual stamp – Woa! 1 cent saved! That will help!) and dropped it in the mail bag – for argument sake, let’s say 8 minutes.

Total: cost of 1 envelop, of 1 headed page, of franking, and of 12 minutes of a (probably junior) civil servant.

Multiply that by the thousands of complaints regarding the 3 main reversed and now defunct budget proposals… Mind Boggling!

Whereas all that was needed, once the proposal was reversed, was:
READ THE HEADING OF MY EMAIL AND HIT THE “FILE” BUTTON
(= bureaucratic lingo for DELETE).

Estimated time: 5 seconds


My question is: is the extra 1% income tax I am going to pay from next January meant to be financing this kind of waste???

Mr Lenihan, if ever you come across this post (though unlikely, stranger things have happened), please respond.

Updates on a “Wonderful Job”

2 updates indeed!

Both regarding my previous post.



The first (smaller) one:

Apart from the email I ranted about (at length) on Sunday, I received a few “semi-automatically” generated emails, acknowledging my correspondence and assuring me that the matter would be brought to the various Ministers' attention…

But I did get another email, from another TD for Meath-East, but one sitting on the opposition benches of the Oireachtas – in this case, the Dáil – or “parliament” in “English” English, instead of Irish… ;-) The tone was so different, almost concerned, and in no way condescending, nor patronising.

So two answers out of 20, not bad for a first time. Never know, I could turn into a professional lobbyist to supplement my Old Age Pension when I eventually reach that stage of life…

The second (bigger) update:

I heard on the way home this evening that Ms Hanafin confirmed today the Government’s decision to row back (it has been qualified as a “U-Turn” by some, and a “Flip-Flop” by others), saying that “the existing arrangements would continue, pending the completion of a full review of the scheme”.

And my reaction to this: Does Democracy actually work?

Quoting from my Oxford dictionary, Democracy is “ 1. a system of government by the whole population, usually through elected representatives”.

So if the elected representatives “get it wrong”, the “whole population” can remind them so. We tend to forget this, don’t we? We give out, we complain, but we do not act. And sometimes, when we do, it works! It’s exactly what has happened over the last two weeks: with the over 70’s, with the Disability Allowance.

In a democratic system, the few are supposed to be working for the welfare of the many: Saving only €4.3 million per annum to the detriment of vulnerable 16 and 17 years olds was not “WELFARE”.

The second part of the definition of Democracy caught my attention: “ 2. a classless and tolerant form of society” Mr. TD Meath-East of last Sunday did not show much tolerance in my view.



Oh Yes, an email was waiting for me when I got home today: from “guess who?” Yes, Mr. TD Meath-East of last Sunday. Again a little “beauty”, see for yourself:

“Hi P.

I assume you will have heard the Minister's announcement. I said in my previous email that I would be confident of a positive conclusion.

I hope this assures you.

T.”

- No, you didn’t say that.

- And yes, you are a chancer!

“Probably Doing a Wonderful Job”

Warning: This is a letting-off-steam-because-I-am-incensed-at-the-stupidity-of-some-people kind of a post. Remember, I am French born and raised, and not known for my submissive nature! Blowing off steam is my way of controlling the “Frenchie Temper” side of me ;-)

I received an email today that quite blew me by its cheer audacity and its condescending tone. Let’s just say that I am quite enraged about it.

Ok, wind back a few steps to explain:

First, I have never in my voting life (since the age of 18) written to any politician or elected representative. I just never have had the need nor the inclination for it. There was a time, in a different life, when I did write to quite a number of Heads of State, Ministers for Justice and Chiefs of Police in various countries around the world – snail-mail at the time – on behalf of prisoners of conscience who had been adopted by Amnesty International, to which I belonged for a good number of years. But in Ireland, I have never done it, until today.

Second, I am quite cynical about politicians in general. Though I always exercise what I consider not only a fundamental right - the right to vote - but a public and civic duty, I often end up voting “against” rather than for, e.g. voting for a candidate to keep another, or a party, out. Not the best way, I know, but I feel it’s better than not voting at all.

Third, Cathal’s birth has brought me into contact with a world I knew virtually nothing about, the world of Special Needs. And there, to my very naïve dismay, I find that all is not well (I know, I know, I should have realised, I am enough of a news-addict to have copped on, but I had not really got the full picture). So little Cathal is the source of my new found education.

A few months ago, I joined the Louth/Meath branch of Down Syndrome Ireland (I live in Meath) and I regularly get emails from the branch Secretary. I also joined DSI Forum. Between the two, I became aware of the proposed changes in the Budget for 2009 for payments of Disability Allowance for 16 to 18 year olds. A call for action came by email on Friday, and I decided to email various ministers, my 3 TD’s, all the Greens elected to the oireachtas (after all, they hold the balance of power) and a few independent TD’s (they too might hold that balance!) – and yes, Hammie, I did contact your newly independent Joe Sixpack! – as well as leaders of the opposition parties. After all, it’s as good a way as any to spend a bank holiday Sunday morning!

I carefully crafted my email, drawing from the statements posted on DSI website, and adapting my template to each recipient with regards to his / her position in or out of government. Nice, polite, stating facts, and using my democratic right to voice my opinion on what I see as a totally misguided and unjust proposal. I did mentioned I was writing as a concerned grand-mother of a child with DS, not mentioning his age, which is irrelevant here, a principal is at stake after all. In total, about 20 emails went out. Not bad for a first time! And nothing like the enthusiasm of the “newly converted” ;-)

To my surprise, I got an answer during the afternoon, from one of my own TD’s. The contents blew me. I will not name him, it would not be fair, though if you want to know more, my email address is in my profile.... Here is most of the email he sent me:

He started by thanking me for my email and went on to say:

“I take a strong view in welfare issues. My wife is a nurse specialising in disability.”

The cynic in me start saying; “So….? What has your wife got to do with anything?”

But let’s give him the benefit of the doubt and read on:

“This is a difficult one because I actually don't think it was designed as a revenue saving exercise. I know people who are inappropriately in my view (but legally) on disability when they could quite easily get a job or go into training of some kind. I know two people who left school because of this provision.”

What? . . . Double take here, read it again. Yes, he did write this!

Ok, what’s next?

“ But I take your point - a reform like this shouldn't be introduced without a corresponding increase in education or training. The National Federation of Voluntary Bodies - who initially recommended this course of action - are meeting Minister Hanafin on Tuesday and I would be confident of a positive outcome.”

True, they did, along with a whole range of other suggested measures what were totally ignored. That WAS my point, if you had read my email properly! Let’s continue:

"However, notwithstanding that we must do everything to ensure no extra family burden financially, surely age 16 is too young to write off all young disabled people as unfit for work or training? Accepting that some are of course, through no fault of their own.”

Double take again…What???? – By the way, the word “all” was highlighted in the email, I did not stress it.

Read on:

“I will be talking to the Minister during the week and will keep you informed.”

Sure you will!...

And the conclusion – priceless:

“My best regards to your family who are probably doing a wonderful job.”

What (again!)??? Do you think his parents have a choice? Would you not do a wonderful job for your own children, special needs or not? So condescending!

Let’s just say that I will not be voting for him at the next General Election – didn’t last time, but definitely not next time!

I did answer him, very nicely, very politely, stating facts as listed on the DSI website, and bringing into play the principals of protection of the most vulnerable members of our society – my professional negotiating skills were strongly called upon here!

In conclusion, am I being “thick” here? Over-reacting just a tad?

In any case, the Political Cynic in me had a field day today! Thank you Mr. TD for Meath-East! You just confirmed what I always thought!





PS - As I have been typing this, I have been listening to Paul McCartney’s Ecce Cor Meum (yes, the former Beatle, a brilliant piece of “new classical” choral music). I was hoping it would help me cool down a bit. Not sure it’s worked! Dam it, I am still mad!