Eight-year-old Eirin Nolan O’Connor is profoundly disabled and in constant chronic pain, needing up to 45 syringes and 18 boxes of medication a day — yet the HSE believes she doesn’t deserve a medical card.
So severe is her pain that for the past six weeks she has been receiving palliative care at Our Lady’s Hospital for Sick Children, where she is dosed with morphine. Even then, the pain is so excruciating that Eirin is self-harming, banging her head off objects in the hope that it will dull the pain.
It has been far from easy caring for Eirin, who can’t walk, can’t talk and has global developmental delay. But mum Lydia, who is 37 weeks’ pregnant, says she and husband David have battled on. All that resilience evaporated yesterday morning when a letter arrived, informing the family that instead of the medical card that they have held since their eldest daughter was born, they will have to rely on a GP card.
In floods of tears as she spoke on RTÉ’s Liveline, Lydia said that even with the help of a medical card, the family already have substantial debt and have sought help from the Department of Social Protection’s hardship fund.
“Life is hard enough for poor oul’ Eirin as it is and this is after tipping me over. There is no way I can leave this hospital with all those bills... It will cost hundreds a week on medication. One box of tablets alone costs €70. We don’t get allowances for anything. Some of her medicines aren’t even covered by medical card and I have to pay for them myself,” she said.
“If they take the medical card off Eirin, they will take it off everyone. You can’t get any sicker than my Eirin,” she sobbed.
The Jack and Jill Foundation is also raising serious concerns about access to emergency medical cards for newborn babies with fatal illnesses.
For the first time, parents are being asked to apply for a PPS number for their infant before they can access the medical card they need to bring them home to die. The bureaucratic demands can take weeks and in that time, the babies may already have died.
Jonathan Irwin of the Jack and Jill Foundation said up to now, emergency medical cards could be organised in a hospital on the day a baby is born.
It can now take 48 hours, but sometimes up to a week, for “the most fragile babies” to access a medical card, but many infants in these circumstances “don’t have that sort of time to wait” said Mr Irwin.
While staff in hospitals are “enormously compassionate” the majority of parents prefer to have their baby die in their arms at home, he said. Often specialist feeding equipment and other services are needed for this to happen, which cannot be purchased without a medical card.
“The Government is in total denial about it,” he said. “There are two different realities: The world of the minister and his men and the world of the rest of us who see what is going on.”
The Government is coming under pressure over its ‘clampdown’ on discretionary medical cards.
The Irish Medical Organisation’s GP committee issued a statement saying the HSE is “denying what we can see with our own eyes”.
Chairman, Ray Walley, said: “Thousands of discretionary medical cards are being withdrawn from young and old people across the country and it is causing untold misery and hardship.”