A “paediatric homecare crisis” is emerging in north Dublin as an increasing number of children with life-limiting conditions are being left without homecare, a charity advocating for such families has warned.
The Jack and Jill foundation, which provides nursing care to such children in their homes up to the age of four, say the problems they are encountering in north Dublin, when seeking to arrange HSE nursing hours to replace the hours they provide, are not replicated elsewhere.
The charity is reiterating its call, first made over a decade ago, for a national ring-fenced budget for home-care packages for terminally ill children and for a protocol on transferring them to home.
It is also calling for an urgent intervention to resolve issues in north Dublin.
Among the families affected are those of Tom O’Leary (4) from Swords, who has trisomy 7p and cannot speak, feed himself, walk or toilet himself; of Freya Doyle (4) from Donaghmede, who has ohtahara syndrome, a rare form of epilepsy and who has a limited life expectancy, and of Cillian Fotrell (3) from Rush, who has West syndrome and a chromonsonal abnormality. He cannot walk, talk, or feed himself.
All three are completely dependent on the care of others for their basic needs.
Homecare hours
Tom’s mother, Catherine, said he has had 48 hours’ nursing care a month from Jack and Jill since infancy, but aware this would end on his fourth birthday on October 28th, she and her husband, John – a former goalie with the Dublin football team – began applying to the HSE in April for homecare hours. “The HSE sent someone out to do an assessment and she said there wouldn’t be a problem.” They had no news however over the summer and towards the end of August it emerged their application was not on file. They began the process of applying again in September. They have had no further news from the HSE. Jack and Jill have sanctioned nursing hours until the end of November.
Freya’s mother, Ciara, began applying for HSE hours in the spring, in anticipation of Freya’s fourth birthday on August 4th. In June a home assessment was carried out. “I was told we’d get news within a fortnight about when the hours would start. There was nothing . . . We have heard nothing since June.
“We have been left completely in the dark. I have emailed and called and it just feels like we are being ignored.”
Given the experienced of Tom’s and Freya’s families, Sinead Moran, senior nursing manager with Jack and Jill, is “very concerned now” about whether nursing hours will be provided for Cillian when he reaches his fourth birthday, on 16th November. Currently in receipt of 44 nursing hours a month from Jack and Jill, he has been assessed by the HSE.
A fortnight ago his mother, Imelda, was contacted by the HSE with an offer of carer hours, who could not give medication. “That just would not be any use,” she said. “He needs a lot of medication and I couldn’t leave him alone with a carer.”
Nursing support
All these children have siblings, who their parents say would be severely affected if they don’t get nursing support to allow them attend to their other children’s needs. They worry for their ability to cope, if they get no help. They want to keep their ill children at home where they can best thrive. “There seems to be a particular issue in north Dublin,” said Ms Moran. “In all other areas I meet HSE care managers, discuss cases and plan for these children. It is an ongoing issue in north Dublin.”
A spokeswoman for the HSE said: “A number of children in HSE North Dublin have reached the age of four and therefore no longer have access to the services of nurses from the Jack & Jill foundation ... The health needs of these children have now been assessed by nursing staff.”
She continued: “A decision on this matter will be made in the coming weeks and all families will be notified of the outcome in writing.”
