Tuesday 25 October 2016

Worry over losing medical card adds to the heartbreak

It took an election to focus the Government's minds on medical cards for seriously ill and disabled children

Published 25/05/2014 | 02:30

LIFELONG CONDITION: Lydia Clery with eight-year-old disabled daughter Eirin, who lost her medical card six months ago
LIFELONG CONDITION: Lydia Clery with eight-year-old disabled daughter Eirin, who lost her medical card six months ago
You never expected to have to turn your house into a hospital wing, did you?

Imagine, if you can, this: You are waiting for your perfect baby to be born. The baby comes out, but something seems to be wrong.

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It should be one of the happiest moments of your life, but suddenly it seems to go darker. You notice doctor and nurses and midwives looking slightly anxious. They exchange grim, knowing looks. You don't hear crying. You keep asking what's going on. They say nothings to you in a calming, soothing fashion. There are more doctors running in, looking at your baby. You didn't get to hold her yet.

Your nightmare has begun.

Your whole life has been turned upside down.

Over the next few days, you will be told many things about your baby. You may be told that your baby won't live very long. You may be told that your baby will never walk or talk, never mind do all the things that other kids do. You may be told of a complex multiplicity of medical conditions that your child will have. Any single one of these things would be catastrophic to you on their own. You will take in tens of them. A heart issue that may seem serious on its own could be regarded as a lesser issue. You could be told that your child will be unable to eat or drink. Maybe your child will need help to breathe through the night, to stay alive. You will be bombarded with information about medical issues and medical equipment and drugs. You will understand very little of it. Mainly, you are mired in fear and dread and depression and an awful sense of tragedy. And guilt. You will feel guilt for being so disappointed in this little mite. And all the time in a desperate fog of disbelief and post-traumatic stress.

In general, even though they keep explaining things to you, you will have very little idea of what to do next or very little understanding of what's going on. You will feel helpless. You will meet lots of different doctors dealing with different aspects of things, and none of them will offer you the answers or the certainty you crave. Any information you actually manage to assimilate will be bad news. You will become familiar with intensive care units full of dying and seriously ill babies.

Eventually, if you are lucky, imagine you get to take your precious baby home. You never thought you would feel lucky to be getting your baby home after months in the hospital. You never thought you would feel lucky to be taking home a seriously compromised baby who will never walk or talk. You never thought you would feel lucky just to have your baby alive. But you do feel lucky. This is a triumph for you. People will start to think you are different now, that you are a saint, that you understand all these things, that all this medical stuff is a normal part of life for you. But you aren't any different. You are the same person you always were, with the same expectations for your life and that of your children.

You never expected to have to turn your house into a hospital wing, did you? You never expected to have to neglect your other kids. You never expected the fits. You know about the fits, don't you? They can be harmless, but you had no idea how frightening and upsetting it could be to see your little child fitting in front of you.

This is still you, remember. This is you, who just weeks, months before this was blithely living a "normal" life. Maybe you had financial worries, or small personal issues. But you now realise that was heaven. That was a different world.

Now your whole life revolves around this room, with this child in it. You haven't even noticed yet that in fact your financial situation has got significantly worse. You have realised, without having discussed it with your partner, that one of you will not be going back to work. One of you will need to be here at all times. So one of you has to give up work forever. That wasn't really part of the plan when you decided to have another child.

Neither have you thought properly yet about who is paying for everything. You have had enormous expense with all this. Some of it has been covered by insurance, some stuff has been given to you so far, and you are maybe getting some help from one of the quasi-governmental charities. You have been "linked in" with the services, but there doesn't appear to be a lot happening on that front.

You maybe haven't had much to do with the Government before, in terms of getting anything from it. You have always worked and always paid your taxes. You don't have a medical card. You're not even sure how medical cards work. You think they are apportioned on the basis of need. So you assume your child will get one. After all, you think, if this isn't need, what is? Your family has been devastated – financially, emotionally, medically, and in every way. Your child is now one of the most vulnerable citizens in the State. So you just assume that your child will be one of the nearly half the population who is entitled to a medical card.

Your first shock is when you find out that actually your seriously ill and disabled child, who will have complex and expensive medical needs for their whole life, is not automatically entitled to a medical card. You will quickly begin to realise that not only is your family's whole life devoted to caring for your newest child now, with only pure love keeping the show on the road, but that you are also spending a fortune on medical equipment, medicines, and other medical bills. You will realise very quickly that love alone is not enough. If you make special pleadings and spend time you don't have filling out all kinds of ridiculous forms and proving that your child has the condition your child has, you may then get a medical card for a while.

You will live with the stress and fear of this card being taken away, and if it is, you will be forced again to submit all the documentation, to prove that your child has their life- long condition. The worry and

stress about the medical card will add to the worry and stress your family already feels as you try and keep things together. Everyone in your house is now sleep-deprived, relations between you and partner are strained at times, and both of you are either working or caring for baby all the time. You haven't had much time for your other children, or indeed for anything else. You are possibly hanging on by your fingernails. And on top of all that you feel abandoned by the State and by the Government.

You see other people going on the radio and TV and telling their stories to the papers. You hate the idea of parading your family's private business, including your financial situation, around the media. It feels like going out with a begging bowl for something that should be a right. But you soon begin to realise why people do it. You realise that it is sheer desperation. You begin to feel there is no other option. You are bamboozled by bureaucrats who don't seem to care. You get fobbed off by people who seem to have no empathy for your situation. You eventually realise that there is no choice except to shame the Government.

And you feel it should be ashamed. With all the hand-wringing in this country about how children were treated in the past, you see that nothing has really changed. You imagine that the taking of medical cards from these most vulnerable citizens of our republic is a stain on our society as much as anything we did to vulnerable children in the past.

The Government seemed surprised when medical cards snowballed to become a major issue in these elections. Presumably the Government had dismissed it as a minority issue and maybe forgot that compassion is not in a minority in this country. Most Irish people are in some way connected to one of the more than half a million people in this country who have a disability. Most people know that it could be them, and it still could be. And even if they aren't connected to anyone with a disability, they are horrified by these stories.

For the Government to act now as if this is a surprise to it, and to pretend it needs time to sort this out, and to make vague promises only when an election comes up, is disingenuous. Six months ago, this newspaper was campaigning on this issue. On our front page we highlighted the story of Eirin Clery, who has a combination of chromosomal disorders, epilepsy and heart and bowel issues, and requires 47 syringes of medication a day. Her mother Lydia was three weeks off having another baby when she was given the news that Eirin had lost her medical card. We have highlighted the issue time and again since then. So it is no surprise to anyone. But of course it took an election to focus the Government's minds on it.

It remains to be seen now how quickly the Government will act without the imperative of an election. Will it implement the just solution that we advocated that day and which many people have taken up since? Will it give a medical card to everyone in this country suffering from a serious disability or a serious lifelong illness? It is one policy that no one would disagree with.

Sunday Independent

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