Homecare for ‘tracheostomy baby’ after case highlighted

One of two babies highlighted this week in The Irish Times who could not go home from hospital because the HSE had not sanctioned safe homecare packages has now had a package put in place.

Dylan Gardiner (22 months), from Graiguenamanagh, Co Kilkenny, who has had a tracheostomy, has been ready to go home from Our Lady's hospital in Crumlin since March. His parents have been trained to suction and clean his tracheostomy tube but as Dylan requires 24-hour care the hospital would not discharge him until a safe homecare package – to include day and night nursing hours – was in place.

His parents applied to their local HSE office in March for a homecare package but were told there were no funds available.

His mother, Caroline Gardiner, spoke on Wednesday of how her son was effectively "trapped" in hospital and described the strain the situation was putting on her family. Yesterday morning she got a call from the hospital to say a "substantial package" had been sanctioned for Dylan.

"We are delighted," said Ms Gardiner yesterday. "It is a pity we had to go down the route of having to put our son before the media to get the result. But the bottom line is we are taking our son home where he belongs. I just hope the other families get their children home soon too."

HSE failure

Dylan was one of seven babies in Crumlin who have had tracheostomies and who are well enough to go home but cannot because of the failure of the HSE to sanction homecare packages. Six now remain, including Josh Knowles (14 months) from Athy, Co Kildare, who is facing his second Christmas in hospital, despite being well enough to go home since September.

The Jack and Jill Foundation which provides limited home nursing care to babies and children, said it was aware of a further 10 babies well enough to go home but unable to due to the HSE’s failure to provide sufficient additional nursing hours to ensure their safe discharge.

Colm Young, founder of the Tracheostomy Advocacy Group (TAG), has described the situation as being at "the worst crisis level ever" and has called for a national homecare strategy for children and babies, with a dedicated office and a central funding stream to which parents would apply.

Currently, parents must apply to their local HSE office for packages with no indication as to the criteria they must fulfil or when they may get a decision.

'System doesn't work'

While welcoming the fact that Dylan

would now be going home, Mr Young said “it doesn’t solve the problem”.

“We still have a system that doesn’t work, that doesn’t make sense and where he who shouts loudest get the package.”

He has met Minister for Children Frances Fitzgerald to discuss the issue and is seeking a meeting with the Minister for Health James Reilly. A spokesman for Dr Reilly said the Minister would "try to facilitate a meeting".

“The Minister is aware of the situation faced by families represented by the Tracheostomy Advocacy Group. The HSE is also aware. We have to await the service plan from the HSE which is due in a number of weeks. We will make contact with the TAG. How could one not be moved by the situation of these families?”