The number of “tracheostomy babies” in Our Lady’s Hospital for Sick Children, Crumlin who are well enough to go home but cannot because the HSE has not sanctioned safe levels of homecare for them, is at “the worst crisis level ever”, an advocacy group has warned.

The Tracheostomy Advocacy Group (TAG) is seeking an urgent meeting with Minister for Health James Reilly to discuss the crisis.

There are currently seven children, aged between three months and three years, in the hospital awaiting discharge.

They have been in the hospital’s transitional care ward for up to two years, with two facing their second Christmas in hospital.

"We are banging our head off a brick wall," said Colm Young, founder of the group.

“ I have been doing this work for six years and I have never, ever seen it as bad as this. These babies are effectively trapped in hospital, they cannot get home. There is no consistency in who gets [homecare] packages and the fight to get them is just getting harder. He who shouts loudest gets the package while other babies are left for months, even years, in hospital. It damages the children developmentally and the strain it puts on families is just colossal.”

Windpipe opening
A tracheotomy entails making an incision in the neck of the patient who cannot breathe unaided. This makes an opening (a tracheostomy) in the trachea or windpipe, and a small tube is inserted to enable the person to breathe without using their nose or mouth.

Children who have had tracheotomies are typically very young babies with a number of complex care needs.

These babies must be ventilated and monitored 24-hours a day in case their tracheostomy tube becomes blocked with phlegm or mucus. If it becomes blocked it must be suctioned, which can be necessary more than 100 times a day.

The parents or guardians must be trained to provide this type of care before the babies can be discharged and Crumlin hospital will not discharge these babies until a safe homecare package – including night- and day-nursing hours – is in place.

According to Mr Young there is neither a central funding stream for homecare packages nor clear protocols for levels of care provided.

“Parents apply to their local HSE office. They are turned down and then the fight begins. And these parents have no fight in them. They are traumatised as it is and then they are abandoned by the HSE. It’s worse than ever.

"We need a national strategy now on how these babies will be looked after once they go home. We need a central funding stream and a national protocol. At the moment, it's like being in Pakistan with shiny walls."

Growing issue
Mr Young said children such as these would have died in the past but are now surviving, and so the issue is one that will grow.

He met Minister for Children Frances Fitzgerald in September and is now seeking a meeting with Dr Reilly.

A spokesman for Dr Reilly said Ms Fitzgerald had raised the issue of homecare packages for tracheostomy babies with him, and he had raised it with the HSE.

A spokeswoman for the HSE said it was “committed to providing the best possible care for infants with breathing difficulties who have tracheostomies”.

“A safe discharge from hospital is paramount. Parents undergo intensive training to assist their child at home. There is ongoing communication between the hospital and community services regarding equipment and other supports required after discharge from hospital.

“The HSE is currently in discussions with the Department of Health regarding service planning arrangements for 2014.”