Vast swathes of our children’s health services are hopelessly reliant on charity just to function. Simply doing the right thing for children with serious illnesses has never been a priority for Government. As part of budget 2016, in what was no more than an election stunt, the Government announced that it would extend free GP care to all children between the ages of 6 and 12. The scheme is set to cost a further €60m per year.
Here are just 3 ways we could spend some of that €60m
1. Automatic Medical Cards for all children with serious medical need
This is all about priorities and the fundamental principal of targeting resources where there is greatest need. In the absence of universal healthcare, children with the greatest medical need must come first. We have been told many times that it is too difficult to determine what would be classed as “serious”. Having looked again and again at how we might achieve that aim, I am convinced, that the best and possibly the only viable way to ensure that the most seriously ill children in Ireland qualify for full and free access healthcare, is to grant all children meeting the criteria for the Domiciliary Care Allowance a Medical Card. All children that qualify for the DCA payment are classed by the State as having a “disability so severe that they require care and attention substantially in excess of the norm”. 29,000 children currently qualify for this payment, yet using Government’s own figures – 10,000 do not have Medical Cards. This is a simple solution to a complex problem.
I believe it is fundamentally wrong to continue to means test the families of sick and dying children.
2. Fully fund children’s palliative care services
Laura Lynn House is Ireland’s only children’s Hospice. The hospice itself and its hospice @ home service receive zero State funding. The Jack & Jill Foundation receives just 20% of what it needs from the State. Both organisations provide end of life care for children with life limiting conditions along with intensive home care packages – every year they must raise in excess of €3m each. The services they provide are a vital support for these children whose little lives are all too short, allowing both the child and their family to make the best of the time they have.
3. End waiting times in key areas – Scoliosis & MRI
Waiting times for vital surgery or even to be seen by a specialist across many areas of children’s medicine are totally unacceptable – often there is no private alternative, even if you had the resources. With children’s orthopaedic surgery, the situation is particularly chronic. Children with severe scoliosis are waiting up to 18 months for corrective surgery. These delays are totally unacceptable; children are enduring unnecessary pain, mild cases become severe, operations become more complex and costly and children are at risk of permanent damage. We need to double the number of full time paediatric surgeons from 5 to 10 as has been consistently campaigned for by the charity StraightAhead. A new theatre is nearing completion but it will be worth nothing without the staff to deliver the surgery that these children desperately need.
Similarly, children in Ireland can wait anything up to 27 months for an MRI. Serious cases are of course prioritised, but where symptoms are not obvious there is a real risk of delayed diagnosis – and significantly poorer outcomes for the child.
We can fix this – Ireland is better than this.
Our Children’s Health Campaign – Background
My neice, Louise Shortall, was diagnosed with cancer in 2012. Her family found it incredibly difficult to secure a Medical Card for her while she was undergoing treatment, and the whole process only served to heap further stress and anguish on the family at what was the most difficult time of their lives.
I simply couldn’t believe that the State would deny a little girl with such a serious diagnosis a Medical Card. I found it embarrassing. It was not representative of the kind of country I believe and know Ireland to be. In response to that personal situation, I set up the Our Children’s Health Campaign, together with Louise’s Dad. We had one simple goal – that all children with a serious illness or congenital condition would automatically be entitled to a Medical Card, simply that these children would be the priority.
In Ireland, the Medical Card is the gateway to all publicly available medical services, aids and appliances. Where children with serious illnesses are concerned – it is vital. The costs for parents are astronomical and many services, even if you had the resources, cannot be sourced privately.
We met and heard from hundreds of parents soon after launching our campaign, parents with very difficult stories to tell. One in particular, Mark Fitzpatrick whose son is the only one in Ireland with the condition KCNQ2, joined us on the campaign and has been working with us ever since.
What have we done?
Our petition gathered over 65,000 signatures. We maintained a daily presence outside the Taoiseach’s office every Tuesday, Wednesday & Thursday for 6 months. We have met with and written countless letters to the Taoiseach, Relevant Ministers and indeed all TD’s & Senators. The campaign played a key role in ensuring that thousands of Medical Cards that were withdrawn since 2011 were returned. We have drafted our own reform proposals to outline how our aim could be achieved. We currently have a role on the Strategic Clinical Advisory Group as a patient representative – a group charged with drawing up new guidelines for issuing Medical Cards to take account of the burden of disease.
As a result of the work of that group, all children diagnosed with Cancer now automatically qualify for Medical Cards for 5 years.
That decision is a very welcome change for those children and their families, however, there are so many more children, with very serious conditions, that should have the same entitlement, at a minimum.
In Ireland, access to education is a right but access to healthcare is a luxury. Bit by bit, we must change that system – starting with our children.