Palliative care week
“On this palliative care week, we must remember that palliative care for children is not about dying, but about living well, for whatever time we have with our precious children. And home is the best place; it’s where their parents want to care for them and caring for these children at home is very much in line with our national policy 2009. But we must have the right level of funding to make this happen. Otherwise it’s just another national pipe dream.
“With this in mind, we are busy making the case to the HSE to support us to do this and to give to Jack & Jill the additional funding we require to extend our age range to children up to 6 years old who require our service. Currently we look after children from birth to 4 years of age.
“From the time of diagnosis, the families should be embraced by the health system and given all the supports they need and that means an automatic medical card for the sick child, along with the right homecare package; well funded, well designed and well delivered and monitored.
“So why does everything continue to be such a battle for the parents of children with additional needs in Ireland?
“As we move gradually towards a universal care model, it’s the children with the severe illnesses who should be top of the queue for free GP care and automatic medical cards, not their healthy siblings. With limited budgets we must look after the most needy first when it comes to our health system and that means the money has got to follow the patient into the home.
“Now is the time for change, as Ireland comes under the UN spotlight for our performance for children in health, education and housing early next year. As the government gears up for that one big win for children, under the UN Convention on the Rights of the Child, and the cabinet will be considering all their options, I would urge Minister Varadkar to be bold.
“I would ask him to make 2016 the year that medical cards are made automatic for children with serious illnesses. Stop talking about the money following the patient into the home and instead make it happen through bigger and better homecare packages for the children who need them. If we are serious about children’s rights, we’ve got to show it in practise. This is what defines us as a nation that cherishes all children equally.”
Jonathan Irwin, CEO Jack & Jill