Sunday 23 October 2016

Lydia's pain, call ourselves a society?

Published 20/10/2013 | 05:00

Is that where we're at now? It's a thing you'd find yourself thinking a lot these days. Like when you saw poor Lydia Clery having to parade her family's worries on the main evening news on Friday, previously having had to ring Liveline.

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Lydia has better things to be doing right now than talking to the media. She's having a baby in three weeks; she has a two-year-old at home and her daughter Erin, who has a combination of rare chromosomal disorders, epilepsy and heart and bowel problems, is in hospital having palliative care.

As Lydia puts it, Erin is "weak as anything up in the bed. She's really not well." Erin needs 47 syringes of medication a day. One of her epilepsy medications alone costs €70 a box.

So Friday morning was not a good time for Lydia to get a distressed phone call from her husband to tell her that Erin's medical card had been downgraded to a GP-only card. Is it not enough then that Lydia has had to witness her little girl – whom she loves as much, and probably more than we all love our kids – extremely ill, in pain, and unable to communicate?

Now we are telling her that we won't be paying for her daughter's medical needs anymore. I defy you to go back and watch Friday evening's news and not have it break your heart.

Any parent with a kid with a disability will tell you that in lots of little hidden ways it costs a fortune in time and money, and you still don't get to give your kid the life you would wish for them, the life that we all take for granted for our typical children.

We can never take away the lifelong sadness of these families. We can never fix it for them. We can never make their lives how they dreamt they would be when they heard they were having a baby. As much as parents of kids with disabilities put a gloss on it and talk about all the joy and the love, don't let them kid you. I'll tell you a secret. Deep down it's still shit. It's shit for the kid in question, it's shit for the parents, and it's shit for their other, healthy kids. It's a raw deal for everyone concerned.

But can we not at least take one worry away from them? Can a civilised society not give them the basics so that at least they can focus on loving their children, and helping them, and loving their other children? Why, because it cannot control the HSE's spending, is the Government now seemingly hell-bent on taking away discretionary medical cards?

Why are they picking on people to whom the worst has happened already, and making it worse? Is that really where we're at now?

Nearly two million people in this country have a medical card. That's nearly half of us. It is basic humanity that every child and every adult in this country with a serious disability and/or illness should have one of those medical cards. Instead we are taking them away from the lucky ones who do. That, it seems, is where we are at now.

Sunday Independent

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