The battle for our children's health

  • Deborah Condon

June 6, 2014

Is the health of our children important? A ridiculous question you may say - of course it is. However the treatment of some seriously ill children at the hands of the Government in recent times would suggest otherwise.

Let's be clear, we're not talking about children with coughs and colds here. We are talking about children with serious illnesses and conditions that require ongoing and often specialist care, such as Down syndrome and cancer.

Having a sick child in a family takes a toll on everyone involved in more ways than most of us can imagine. From the stress and worry, to the logistics - how will we manage all these healthcare appointments with work, other children etc...- to the financial strain. The pressure on parents is immense.

The issuing of a medical card to a sick child can at least take some of the financial pressure off. Consultant fees, medicines, specialist medical equipment - these are just some of the costs parents have to face. Even those on a ‘good' wage could face serious financial problems as a result.

There are very strict financial guidelines pertaining to medical cards. Depending on your circumstances, if you earn over X, you will not be given one. This is where discretionary cards have come in. Where a person has been close to qualifying, they may have been given a discretionary card. An estimated 50,000 such cards are in circulation.

However, the powers that be decided that in order to save some money, wouldn't it be a great idea to take these cards away from people. Big mistake. Especially when local and European elections were just around the corner.

Politicians calling to houses were ready for the arguments about water rates, property tax and that the damn Troika, but they were not prepared for people's anger over this issue.

Just days before the elections, two ordinary dads launched an extraordinary campaign - Our Children's Health. The main aim - to ensure that every child in Ireland who is diagnosed with a serious illness or congenital condition is legally entitled to a full medical card for the duration of their illness.

In just over two weeks, over 60,000 people had signed their petition calling for this entitlement.

But what led these two men to initiate such a campaign? Having to ‘fight tooth and nail' for a medical card for a child with leukaemia did.

Kevin Shortall lives in Clondalkin with his wife Tracey and their three children, Sam, Louise and Jane. In April 2012, they were given the devastating news that their daughter Louise, who was just short of her 7th birthday, had acute lymphoblastic leukaemia (ALL).

Kevin's brother-in-law, Peter Fitzpatrick, who lives in Ballyfermot with his wife and 10-month old daughter, explained that what was a horrific situation was only made worse by the red tape associated with applying for a medical card.

"Over the last two years, I have looked on as Kevin and Tracey tried to come to terms with the shock of Louise's diagnosis and all that meant for their family but on top of that, I have seen first hand what they have had to go through to try and secure, and hold on to, a medical card for Louise.

"To be honest, I was embarrassed by what the State was putting them through. This was the only time this family had turned to the State for help - a medical card for their seriously ill child and it responded by making things as difficult as possible," he said.

He pointed out that the family had never had a medical card for anyone ‘and never wanted one', but obviously Louise's illness changed things. When they initially applied, they were seeking a card for Louise and Louise alone, but they were told they could only apply for the whole family.

They submitted their long and detailed application.

Over the next 19 months, they were given temporary rolling cards on four different occasions - cards that could be cancelled at any time without warning. On one occasion, they went to the pharmacy to get medication that Louise required and were told by the pharmacist that the card they had was no longer active.

After 19 months, they received official word that their original application had been declined. They appealed the decision and recently received word that Louise could have a card - for one year.

"This means that if things don't change, in one year, they will have to jump through all those hoops again," Peter said.

According to Kevin, he and his wife said that if they ever got the chance, they would ‘try to do something abut this ridiculous situation'.

When Peter approached him with a plan for a campaign, he knew this was the right time to take action.

"It was clear to us that Peter had put a lot of thought into this, and now that Louise is please God nearing the end of her treatment, we were happy to do whatever we could to try and change the situation. So we decided that Louise's birthday, May 20, would be day one of our campaign and set about putting it all together," he explained.

Since then, the two men, with just the help of extended family, have launched a website featuring an online petition, starting sending letters to all members of the Oireachtas calling on them to act urgently in this matter, maintained a presence outside Government buildings every morning that the Dail was in session, met with the Taoiseach and Junior Health Minister, Alex White, and promoted their campaign to as many people as they could.

All this while continuing with their day jobs.

"I'm not going to lie, the last few weeks have been very intense with a lot of work involved, but we are in this for the long haul," insisted Peter.

One of the main issues surrounding medical cards is that the application is based purely on a family's finances, not the medical needs of the child. On May 29, the Government announced that it was suspending all reviews of discretionary medical cards. It seems all that controversy and the bashing it had taken in the recent elections had taken its toll on our politicians.

The Government has also said that it plans to change the current law on the granting of medical cards to allow people to be automatically granted a card if they have designated medical conditions, rather than basing eligibility solely on income.

Peter describes this move as ‘hugely significant'.

"We thought we would have to bang that drum for a long time and were prepared to. That being said, there is a long way to go between now and the introduction of any new framework. Our focus now moves to seeing that process to fruition, and we will play any part we can to that end.

"The key difficulty now lies in establishing the qualifying criteria. The ultimate outcome must be a system that will automatically grant full eligibility in the first instance to all those diagnosed with a serious illness or a serious congenital condition, for the duration," he insisted.

However, what about those who have already lost their discretionary cards? On June 4, the Government made another announcement, stating that people who recently had their discretionary cards removed would have them restored.

The HSE had previously said there was currently no legal basis to restore discretionary medical cards to people who have had them removed under the now abandoned review process.

However, Finance Minister, Michael Noonan, indicated that many people who had cards removed would be getting their medical cards back. But it is unclear who will, or more importantly, will not, get them back.

"Those cases where appeals were declined or where no appeal was in process, are still in limbo. People need answers, nothing has changed for their child," Peter noted.

He pointed out that Our Children's Health is ‘a very recent part of a wider campaign' on this issue that has long been conducted by a number of organisations, such as Down Syndrome Ireland and the Jack & Jill Foundation. These organisations, he said, have worked tirelessly to expose the reality of this issue for years.

So what is next for the two campaigning dads?

"In the short term, our plan is to continue to garner as much support as possible for our campaign. We need people to continue to log on and sign our petition and maintain the pressure on Government so that they will see this through and crucially, get it right.

"In the medium term, we need to start a national debate on health policy in Ireland. We can no longer have a situation whereby governments lunge from one policy direction to another - one government establishes the HSE, the other vows to dismantle it. All of this is hugely counter-productive. Health is too important. Our Children's Health is too important," Peter insisted.

For more information on this campaign, or to sign the petition, click here

Govt to restore medical cards

 


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