News | 1 year ago

The Irish healthcare system is fraught with problems.

We’ve had the introduction of the controversial free GP care for under sixes, with a promise in the last budget of free GP care for under twelves in the future. We’ve seen the debacle over discretionary medical cards cause huge stress for parents before the change was reversed. And we know we are among the worst in Europe for waiting times in hospital emergency departments.

However, for many parents I spoke to, healthcare didn’t come up as a top election concern. I can understand why. For those of us who have kids who need an occasional trip to the GP but are not otherwise unwell, complaining feels somehow wrong. We already have free GP care for under sixes, and even if the odd trip to A & E takes a lot longer than it should, it seems disingenuous to protest too much when there are children with long-term illnesses who have good reason to complain.

Yes, the waiting lists for eye appointments and speech therapy are inordinately long. Yes, due to cuts, the dental screening that used to take place at infants’ level is now not happening until second class in many schools.

But really, it’s children with long-term illnesses and special needs who feel the brunt of our healthcare system issues every day.

This is something about which mother of four Dearbhalla feels strongly. “Healthcare - any spare money in the economy, any ‘fiscal space’ - should be allocated to supporting families of children with special needs. It is an indictment of this country that it’s one of the worst countries to have really sick children in - from diagnosis through to treatment and support.”

Mum of two Gemma is very clear about what she wants. “These would be my top concerns - building of the new national children’s hospital, though please, please not James's - who ever wants to attend bi-monthly hospital appointments on the Luas? And hurry up and build it!”

Gemma, whose little boy has Cystic Fibrosis, has an election request that’s very personal to her.

“The funding of 'orphan drugs' such as Orkambi through the HSE. Yes, they are expensive, but imagine being told a drug that could give your son a long life instead of a 'limited life expectancy' was too expensive. What about the reduction in hospital time and treatments?”

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Late last year, the HSE indicated that the drug, which reduces hospitalisations by 40 per cent, was too expensive and could not be covered by the state. But following a meeting between Cystic Fibrosis Ireland and Minister Varadkar in January, this is under review. Meanwhile, parents like Gemma wait and hope.

Parents of children with special needs are used to fighting for everything. Sarah*, who has two children with special needs, talks about an imaginary but very typical example to give us a sense of what this is like.

“Poppy has Down Syndrome and a mild learning disability. She’s thriving in mainstream primary school with a little extra help from her teacher and access to a special needs assistant. But she also has medical issues and her parents spent years fighting to get a medical card for her. Even that doesn't cover the cost of transport, hospital parking, eating on the run, lost work, overnight accommodation, and childcare needed for the other children. Poppy's mum eventually had to give up her paid job because her employer would not support the time off that she needed for all the hospital visits. Now the family is falling behind with the mortgage payments, which is yet another huge worry.”

Mental health is something that causes concern for parents too. Mum-of-one Karen feels passionately about this. “I have a son, and as a male he's more likely to take his own life. Ireland is currently in the middle of a suicide epidemic and it has to stop. We need more real, practical investment in mental health, from the ground up. Ads on the TV telling us it's 'okay not to be okay' and that it's time to talk are all very well and good, but what happens when there isn't anyone to talk to? What happens when your only option is A&E where you're given a few tablets and put back out on the streets a few hours later with the vague promise of an appointment in the future? What happens when you're clinging on for dear life by your fingernails for an appointment with a mental health professional that's six months away? Or when you get that appointment and it's not the same doctor you saw the last time, so you have to start from the beginning again. We need real, proper investment in mental health - more psychiatrists and psychiatric nurses, more inpatient beds for teenagers and children as well as adults, more community based care, and a vast reduction in waiting lists.”

At a basic level, many parents are concerned about what our kids are eating. “We need fresh fruit and vegetables subsidised via an increase in VAT on sweets and fast foods,” suggests Georgina. “Primary schools should be sweet free zones.”

Anne-Marie feels similarly. “Banning sweets from school sends a clear message that sugar is a treat, not a lunch, and kids might grow up with a better understanding of what’s healthy and what isn’t. I see so many parents giving treats to their children every day, and I don’t think they realise the damage it’s doing, especially to teeth.”

Healthcare is something that affects all of us. Even if our own children are not suffering, others are, and every child deserves to the right to be properly and fully looked after, whatever their needs may be. Nobody chooses a life with illness or disability. Have your say on February 26.

*name has been changed.

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