FATHER OF THREE, Kevin Shorthall has gone through every parents’ nightmare.
Two years ago, a month before his little girl Louise’s seventh birthday, she was diagnosed with Leukaemia.
Since then Louise Shorthall has had 112 weeks of chemotherapy other cancer treatments.
This week, on his daughter’s ninth birthday, Kevin and his brother-in-law Peter Fitzpatrick, gathered in a hotel conference room in Dublin’s city centre and launched their new campaign, Our Children’s Health.
Why? Over the last two years Kevin and his wife Tracey have had to battle to hold on to a discretionary medical card.
The newly created Our Children’s Health campaign is calling on the government to amend the Health Act of 1970 so that any child diagnosed with a serious illness or congenital condition is automatically entitled to a full medical card.
Shorthall said his story is a common one in Ireland, saying families are fighting two battles – their child’s illness and the HSE.
He said that he has heard “heartbreaking and infuriating” stories of how parents have been dealing with the costs of their child’s illness.
Watching his family struggle
Fitzpatrick had watched his sister’s family struggle over the last 24 months and felt that something needed to be done, now, for his niece Louise and for every other child and family that are fighting for what he says should be an ill child’s entitlement – the right to a medical card.
“Peter wrote a letter to me to show me how serious he was. He’d watched our struggle from the sidelines. He told us about his plans for Our Children’s Health and what we were going to do,” said Shorthall.
Fitzpatrick explained that if you are above the allowance it is at the HSE’s discretion if they give you a medical card – and “it all comes down to the term undue hardship” he said.
He said that he had heard “too many stories” like his niece’s story, of parents struggling to get a medical card for their ill children. He criticised the centralisation of the medical card services, stating that while it sounded good in theory it took all the compassion out of it, he said.
He pledged that he would be outside the Dáil every morning with a large sign until something was done about the situation.
Getting visibly upset speaking down the microphone, he said it was difficult to watch what parents were going through, watching their children being ill, while struggling with the HSE to get a medical card. “It’s hard to watch what they are going through,” he said.
Jackie Connolly, who attended the launch of the campaign, says she’s very worried about the long-term costs of looking after her daughter. Her six-year-old daughter Katie has Down Syndrome, juvenile arthritis, chronic asthma and a heart condition.
She has had Katie’s medical card taken away, despite her conditions having got a alot worse over the last year.
“It shouldn’t matter how much money a person makes because at the end of the day you have a child with a disability or a long term-condition,” she said. “That’s enough to be worried about.”
She explained that just one of Katie’s medications can cost up to €400 per month, not to mention the costs of physiotherapists and consultants she sees.
“I don’t want to have to choose which medicine or appointment we can do this month – it shouldn’t be that way. Katie deserves all the care that she needs,” she said.
“We are being squeezed left, right and centre – and it will be the legacy of this government that they let this happen to sick children,” said Connolly, adding that the legislation encourages one parent to give up work as then they would qualify under a means test.
Speaking to the incoming president of Downs Syndrome Ireland, Mary Doherty she said they have been asking the government to give discretionary medical cards to children like Katie for years, but said it should never be down to discretion, they should get them automatically.
Speaking about reports that a mother of a Downs Syndrome was called by the HSE and asked if her child’s condition had improved she said “I have no doubt that that was asked” saying she had heard of plenty of similar stories.
She said the onus is placed on the parents to fill out lengthy documents, with additional information asked for when the HSE want more proof. “Why isn’t the doctor treating that sick child good enough prove for the HSE?” she asked, stating that parents are asked to jump through hoops to get the card.
This isn’t the first story of discretionary medical cards being revoked from families with very ill children. Last week, TheJournal.ie brought you the story of Lauryn Tracy, a five-year-old girl, who had her wheelchair stolen last year and whose family have now been told by the HSE that their discretionary medical card is being taken away.
Fitzpatrick said the campaign is not just about his family and their struggle:
This is about Isabella, Eric, Ben, Katie, Lauryn, Alexander – this is about all of our children. We fundamentally believe that every child in Ireland diagnosed with a serious illness or congenital condition should be legally entitled to, and automatically issued with, a medical card for the duration of their illness.
“These parents are stuck in a channel between home and the hospital. We are here to give them a voice,” said Shorthall.
“Parents who are dealing with a very sick child are not out to scam or make a buck – but they don’t have the strength to fight on for their child and fight an organisation like the HSE for something that their child should just be given – it’s as simple as that,” he said.
Pressure has been growing on the Government after a series of parents went public to tell of how medical cards were suddenly taken away from their children.
They pledged to tackle the issue after this weekends election.
Shorthall and Fitzpatrick said they believe “no one in this country wants this – no one wants to see our sick children treated this way by the state”.