Yesterday (Tuesday), Liam Hall from Rooskey in County Roscommon celebrated his 4th birthday and just like any little boy, this day should have been a happy one for him and his family.
However, the Hall family are the latest casualty of a HSE system that has failed to replace the 12 hours of home nursing support they receive weekly from the Jack and Jill Children’s Foundation, support that officially ended yesterday as Liam reached his 4th birthday.
Liam suffers with severe cerebral palsy which is complicated by laryngomalacia (softening of the tissues of the larynx). He also suffers sub clinical and clinical seizures and visual impairment.
His latest birthday now brings him outside the charity’s age criteria to support and fund families of children with severe neurological conditions from birth to Liam’s age.
The HSE currently provides 10 hours in home nursing per week to Liam, in two slots of 5 hours that must be delivered between 8am and 8pm. Although his parents Aine and Brian are satisfied with and appreciative of the local HSE nurses provided, this timetable does not provide any of the vital night time support they need. In contrast, the care provided by the Jack and Jill service can be taken up at night time which gives both parents time for much needed rest. Currently the Jack & Jill Foundation only recieves 18% of its budget from the HSE.
Speaking to the Leitrim Observer, Aine says although she and her husband originally did not want to go public with the story, she felt this was the only way to reach out to the authorities involved: “We did not want to go to the media but how else will Liam be heard?”, she says. “Liam doesn’t have a voice, but if he did he’d as the Minister to do his job and help us. It shouldn’t be this hard.”
Aine notified the HSE of the cessation of Jack and Jill’s support on his 4th birthday as far back as September 2011, but so far they have failed to replace Liam’s care hours from the charity.
“We have written letters and had meetings but none of this has worked,” says Aine. A letter she recently sent to the health authority highlighted concerns over Jack and Jill’s position on children over 4 years old, but Mrs Hall insists her letter was not given its full attention.
“They told me in their reply that significant resources are provided. This means they did not read the letter in full as they included the Jack and Jill hours we will lose.”
Liam needs around the clock care and is tube fed and completely dependent on others. The Hall’s also have 16 month old Niamh, 5 year old Sean and Aine is expecting her 4th child at the end of the year.
Making a direct appeal to the Minister, Aine says: “Underneath it all, he’s a little boy who just wants to be at home with his family and friends where he belongs.
“I have to say that Jack and Jill have given us great support over the last four years, but now it’s time for the HSE to step up and give us the support we need. But why do we have to fight so hard for everything, when all we want to do is to look after our little boy at home?”