Last week it emerged that the budget of the Jack and Jill Foundation is to be cut by €20,000. Here Jack and Jill CEO Jonathan Irwin explains why immediate action is needed on the National Children’s Hospital – and why the planners were right to turn the Mater proposal down.

THE FAMILIES OF the 1,500 severely disabled children that we’ve supported since 1997 sadly know the Irish hospital system inside out.

This is an experience I’m all too familiar with myself, having cared for our son Jack Irwin at home until he passed away aged 22 months in December 1997.  Jack is the reason we set up Jack & Jill – as we didn’t want any other family with a child like Jack walking this painful pathway alone – and his care plan was the blueprint for the practical home nursing care we provide in every community in Ireland.

So, as repeat customers, you would think that Jack & Jill families and nurses would be consulted about the location of the new Children’s Hospital – and yes, views were sought from my nursing team at the outset of this €35million consultation process. But they weren’t heeded.  If they were, we wouldn’t be in this mess, as the Mater site wouldn’t have been on the table.

What we need now is a review group on the Children’s Hospital, one that actually listens to the people closest to the sick children – and I can tell you now that the Mater site won’t even feature in their Top 10.  Looking at the names behind the existing review group, I fear the Minister is trying to do a Nice 2 (or a Mater 2) by forcing it down people’s necks second time around.

From the outset it has struck everyone as odd that only one site was ever seriously considered. If you were playing “hunt the thimble” in Dublin, Eccles Street is the hidey hole you would chose for the thimble.

Then as if the Wizard of Oz was the consultant to the project the Mater Hospital’s car park was selected as the new home for Temple Street Children’s Hospital, Crumlin Children’s Hospital and the National Children’s Hospital at Tallaght. Feeling that the soufflé needed some more oomph he added the Rotunda Maternity Hospital into the recipe.

Remember, all this was to fit into a car park, so are we surprised that the architects were forced to design a pregnant spaceship stretching to the clouds that appeared to crouch over the city of Dublin like a malignant toad? How anybody could have ever thought that the planning authorities could approve the plan is beyond belief. The squealing and the abuse heaped on the planners were not edifying.

‘The briefest glance at the form sheet insists that the HSE is not allowed within a million miles of any involvement’

But not all is lost. Remember what will be built is a facility for children that the nation must rely on for at least the next fifty years. It will need an area to allow it to expand and from the outset it must be easily accessible to the most distressed and vulnerable of persons – I suggest the parents of a gravely ill child.

As we now have a window of reflection it comes apparent that there are at least a dozen sites that have reasons to be on the radar screen of the review body. Some within the boundaries of the city, some on the perimeter motorway and some further into the countryside around Dublin. Each has merit, each has its faults but not one of them are such a disastrous option as the Mater.

Co-location is the new buzz word and indeed it seems sensible to amalgamate the existing maternity hospitals (all of which are way beyond their sell by date) into one and locate it beside the new Children’s Hospital. Dublin is rich with adult hospitals, none of which would be more than 10 minutes away by ambulance.

This problem is heavily loaded with the politics and jealousy of the medical world. Territorial rights are securely guarded and little ground intellect or understanding is allowed into the ring. Diplomacy will reek of the Middle East.

Then there is the actual built project. The briefest glance at the form sheet insists that the HSE is not allowed within a million miles of any involvement. The average completion date for an HSE project seems to be in excess of 12 years. In recent times we have seen the private sector achieve the opening of hospitals in under four years from foundation laying to the first bed being filled.

Another ‘add-on’ to the management of the hospitals is the need for the Government to implement a national budget for paediatric home nursing. It is nine times less expensive than hospital care and the home is where the family wish their darling one to be. It is frightening to think that if Jack & Jill did not exist, at least 90 of the 288 under our wing would have to be in intensive care by tomorrow night. There are simply not enough beds available and paediatric hospital care would be overwhelmed. The good management of a hospital long term demands that primary home care is also well funded.

Jonathan Irwin is the CEO of the Jack and Jill Children’s Foundation, which provides respite care for the families of children with brain damage. You can visit their Facebook page here.