Lack of nurses in community preventing ‘tracheostomy’ baby going home

The mother of a 16-month-old baby who has been in hospital since he was born but has been ready to go home since July, said she had lost all faith in the Health Service Executive after being told she still cannot have a date for her son’s discharge.

Rhona Knowles, from Athy, Co Kildare, whose son Josh has a tracheostomy, was told in November that funding had been sanctioned for his homecare package. However, she still has not received written confirmation of this. On Wednesday she was told there were not enough paediatric nurses available in the community to provide a safe level of cover.

Josh Knowles was born prematurely at 30 weeks and six days in the Coombe hospital, Dublin.

His lungs collapsed and he has “floppy airways” which it is hoped will strengthen in time. A tracheotomy, which entails an incision being made in his airways into which a tracheostomy tube is inserted to help him breathe, was performed in Our Lady’s Children’s Hospital, Crumlin where he has been since. His parents have been trained to clean and change his tube. However, Crumlin will not discharge Josh until a safe homecare package is in place, which would provide equipment as well as nursing cover to enable Josh’s parents to get some sleep, work and care for his older siblings.

Josh was one of a number of "tracheostomy" babies effectively trapped in hospital due to the refusal of the HSE to sanction homecare packages highlighted by The Irish Times in November.

Ms Knowles said she was told later that month and on December 5th that funding had been sanctioned. However, by January 14th neither she nor the hospital had received written confirmation of the package.

She said she was contacted on Wednesday evening and told that there was a “shortage of nurses in the community and children already at home are not having their nursing hours filled and that has to be addressed first.

“They said they could not give us a discharge date so we have no idea if it’s two or three months. What’s to stop them turning around in two months and telling us it will be another two? I am so sick of it all.”

Colm Young of the Tracheostomy Advocacy Group described the treatment of the Knowles family as "inhuman", saying the HSE had known of Josh's "imminent discharge since July and the funding has been in place since November. "Why are they only looking for nurses now?"

A spokeswoman for HSE Midlands confirmed funding had been sanctioned for Josh to go home. It was, however, “essential” that where a package was put in place that it was sustainable, “so the family can be assured of continuity of support to them and their child”.