Care package for sick children needed

Sir, – My eight-month-old son, Hugh, died on August 17th, in Temple Street Hospital, after spending most of his short life in hospital.

With the help of the Jack & Jill Foundation, we were lucky enough to have him home for a few precious weeks in June and early July. Those six weeks were some of the best of my life – because we could be a normal family again. We have two other children, Theo (three) and Fred (two). We didn’t have to decide which child to hug – we could hug them all together.

Hugh was minded in hospital at a cost of more than €2,000 per day (€14,000 per week). He was well cared for in hospital but we wanted to bring him home so he could experience a normal life. Normal life is not having a TV constantly in the background. Normal life is being able to turn on and off the lights when you like. Normal life is being able to lie on the bed with your child and snuggle them – which is not possible in the hospital unless you lie on the floor.

There are children waiting for a hospital bed and having their surgery cancelled or delayed because children are lying in hospital, like my son was. Yet home care packages for children are on average nine times less expensive than keeping them in hospital.

READ MORE

If Hugh was 80 years old and needed support to leave hospital, it would have been approved in six to eight weeks and the HSE would have paid up to €2,000 per week to provide him with a home care package or allowed him to transfer to a long-term facility .

It is difficult to understand why it takes HSE six to eight weeks to approve the more appropriate and less expensive care for someone over 65 years through a national scheme: but there is no such national system for treating children. Many children are just stuck in hospital for months, even years. There is not a single cent of an assigned national budget to allow sick children to go home.

Even if you don’t care about children like my son Hugh, from an economic point of view the current system is outrageous.

Many other parents who we met in our months in Temple Street are still there today and just want to go home with their children. They don’t want to be there, not because it isn’t a great place, but because their children would do better at home and the cost to the State would be a fraction of staying in hospital.

Why is there such help when you are 65 years old, but not when you are six months old? Children need a fair deal too. Does anyone care? – Yours, etc,

ADE STACK,

Dublin Road,

Kinsealy, Co Dublin.