National homecare strategy for children needed ‘urgently’

A national homecare strategy for children and babies must be established “urgently” with a central funding stream, an expert in paediatric intensive care nursing has warned.

Dr Maria Brenner, of the school of nursing, midwifery and health systems at UCD, made her comments yesterday as it emerged that there are 17 children and babies in hospitals around the State who are well enough to go home but cannot because the HSE has not sanctioned safe levels of homecare.

Yesterday's Irish Times reported that there were seven babies, aged between three months and three years, who have been in Crumlin Children's hospital for up to two years but who cannot leave as the HSE has not sanctioned the homecare packages they would require to be looked after at home.

They have all had tracheostomies, all need 24-hour care and all need homecare packages, including medical equipment and nursing hours, before they can be safely discharged.

The HSE has not sanctioned packages and has not indicated when funding may be available but said it was in discussions with the Department of Health regarding service planning arrangements for 2014.

Two of the babies – Josh Knowles (14 months) and Dylan Gardiner (22 months) – are facing their second Christmases in hospital.

Colm Young, founder of the Tracheostomy Advocacy Group, is seeking an urgent meeting with Minister for Health James Reilly, to discuss the crisis.

He is calling for a dedicated homecare department in the HSE with clear national protocols and a central funding stream, to ensure clarity for parents.

Currently parents apply to their local HSE office for homecare packages with no indications as to the criteria they must fulfil or when they may get decisions.

The issue was raised in the Dáil yesterday by Sinn Féin’s Gerry Adams. He said the programme for government commits to integrated “health care delivery, in which the right care is delivered in the right place”.

Taoiseach Enda Kenny said it was a great advance in medical science that babies and young children are able to live a normal life once the tracheotomy has taken place.

“ I expect the matter to be referred to in the health service plan, which the Minister for Health should have in the next 10 days or two weeks. It is clear there is an element of funding and I admire how training has been put in for parents in respect of children.”

Johnathan Irwin, chief executive of the Jack and Jill Foundation, which provides limited home nursing care to critically ill children, yesterday backed Mr Young's calls. He said the foundation was aware of 10 other babies in hospitals "across the country, who are well enough to go home but can't because the HSE won't provide the back-up their parents need". He asked why there was a homecare strategy for older people.

The foundation can provide up to 64 hours homecare per month to babies and children.

A spokeswoman for the HSE said it was “currently in discussions with the Department of Health regarding service planning arrangements for 2014”.