Get your priorities right, Enda, and fix this mess
The HSE’s broken medical card system is hurting the most needy families and must be mended quickly, writes Jonathan Irwin
THE FAMILIES of the 300 children around the country supported by the Jack & Jill Children’s Foundation are being put through an unmerciful rigmarole on medical cards, and it’s got to stop. It’s like torture in slow motion, in the guise of HSE form filling, endless reviews, rejection and appeals.
And for those who secure the medical card, which is effectively their child’s passport to the basic care plan — and not a five-star family pass to Disneyland — the torture continues as Mum and Dad lose more sleep, worrying endlessly about the next application, the next review, the next rejection letter. Does it have to be like this? We’ve asked the Taoiseach to intervene and to sort this broken HSE medical card system out. However, when some parents followed our instructions and rang the Taoiseach’s office to make their complaint about medical cards and to urge him to step in, the operator told them they had the wrong number and, wait for it, referred them back to HSE Central!
Talk about going around in circles. This is one merry-go-round that is anything but merry.
What everyone must remember is that underneath every statistic on medical cards, these are ordinary families with extraordinary healthcare requirements.
The Jack & Jill club, started back in 1997, exists for precious children, young Irish citizens with brain injuries, all to different degrees, all with their own story. All serious, all life limiting. Some with unpronounceable rare genetic disorders. Some never to be diagnosed and instead labelled by the medical profession as “globally delayed” — which sounds mild enough until you understand what it means in terms of feeding tubes, oxygen tank, syringes, standing frame, bath chair and an entire sleep system, along with a cocktail of medication that would give your ordinary parent a heart attack. In fact, the average number of pieces of medical equipment in a Jack & Jill family household is 22, and the cost of having a child with severe disabilities runs into tens of thousands of euro when you consider lost income-generating opportunities.
It’s certainly not an easy station caring for a child with life-limiting conditions at home, and it’s a very expensive one. I should know, based on our own experience with my son Jack Irwin who lived until he was 22 months old, and whose homecare plan became the blueprint for Jack & Jill which has supported nearly 1,700 children over the last 16 years.
Today, what I really can’t understand is how badly briefed the Taoiseach is by the HSE on the whole medical card situation. And then last week at the Joint Oireachtas Committee for Health & Children, I witnessed for myself what my wife, Senator Mary Ann O’Brien, calls ‘two parallel realities’ — the reality as per the HSE briefings versus the reality of our families and nurses.
And so the HSE attempts to soothe the Department of Health, various ministers and the Taoiseach with briefing documents suggesting there is ‘no policy change’, also stating that we’ve never had more medical cards in circulation.
‘It’s the HSE that should be in the dock for review, not our families’
So is the harsh reality for Jack & Jill families part of this wider HSE review of medical cards that will save millions for the taxpayer by taking over 100,000 medical cards out of the system? I’ve heard Michael Noonan describe some of these medical cards as “duds”. Well I can tell you Minister Noonan that none of the medical cards issued to Jack & Jill children is a dud or unwarranted. Each one is desperately needed.
Most alarmingly, what’s also come out over the last week is that our medical card system is based on some 1970 childcare act, and that the financial status of the patient trumps the medical status of the patient in terms of assessment for medical card. Why can’t we change the legislation if that’s what’s required? We need serious leadership on this. And it’s the HSE that should be in the dock for review, not our families.
Meanwhile, the media do their best to ask the right questions, going into overdrive seeking out families who have a problem with their medical card application. Expecting families to talk about their personal health and financial problems. Asking them to pose for photos and to explain just how hard their lot is in life. And we ask them, because it strengthens our argument, and some do it. But the majority won’t and I can’t blame them. Many are afraid that speaking out now will make their next medical card review even more difficult.
The reality this weekend is that parents are losing more sleep, wondering which local TD will best make their case on behalf of their child who doesn’t have a voice, which newspaper to bare their souls to in order to influence the decision-makers, and what happens if their child doesn’t get his or her medical card.
Next time you hear or read about the parents of these children — telling their sad stories on the national airwaves, talking about their child’s condition, their daily routine, their sense of duty to keep this child warm and cosy at home where they belong and which is nine times cheaper than a hospital bed — when you hear these voices, imagine how much courage and effort it has taken to get to this point of going public with their story. And all to make their child’s case for a medical card. A small piece of plastic that should be an automatic entitlement, a right, for Ireland’s most deserving young citizens. Would you do it?
As for the free GP cards for under-5s announced in the Budget, I remain convinced that the parents of healthy children under 5 years old do not want this at the expense of medical cards for children who are dying, or children with severe disabilities whose medical cards are delayed or refused.
As with any limited household budget, this Government must get its priorities right and look after the most needy first.
The medical card debate is still going around in circles post-Budget and I am again calling on the Taoiseach today to order a review of the HSE’s broken medical card system, before any Free GP cards for under-5s are initiated.
What we need now is courage and integrity from the people who can fix this broken system. And we need it now, because children with life-limiting conditions don’t have time on their side. Jonathan Irwin is CEO and founder of the Jack & Jill Children’s Foundation