Liam Hall from Rooskey is latest casualty of HSE cuts, as HSE fails to replace his Jack & Jill home nursing care hours today on his 4th birthday, leaving his family in limbo –
His Mum and Dad make direct appeal to Minister for Health, Dr. James Reilly T.D. to intervene
Today (Tuesday 4th September 2012) is Liam Hall’s 4th birthday and should be a happy day for him and his family in Rooskey, Co. Roscommon. However, the Hall family are the latest casualties of a HSE system that has failed to replace the 12 hours of home nursing support they receive weekly from the Jack & Jill Children’s Foundation – support that officially ends today as Liam reaches his 4th birthday, bringing him outside the charity’s criteria to support and fund families of children with severe neurological conditions from birth to 4 years old. His Mum Aine and Dad Brian say they have no choice but to make a direct appeal to the Minister for Health Dr. James Reilly T.D. to intervene. While the Jack & Jill Foundation, itself under severe financial pressure receiving only 18% of its budget from the HSE, says it won’t abandon Liam, it says his care plan must be taken over by the HSE sooner rather than later. Today coincidentally is World Cerebral Palsy Day.
The cessation of Liam Hall’s Jack & Jill support on his 4th birthday has been notified to the HSE as far back as September 2011, but the HSE has failed to replace Liam’s care hours from Jack & Jill. Liam has been under the wing of Jack & Jill since he was a baby. He has a very complex neurological condition which is complicated by laryngomalacia (softening of the tissues of the larynx), sub clinical and clinical seizures and visual impairment. Mum Aine says, “Liam needs around the clock care and is tube fed and completely dependent. Regardless of the best intentions, family and friends are simply unable to look after Liam. On a good night, he wakes up 3 times which is just exhausting for us and as Liam gets older we’re going to need more support hours to keep going.” 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.
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, with no flexibility. According to Aine and Brian, while they are happy with the local HSE nurses provided, this timetable is way too regimental and does not provide any of the vital night time support they need, in contrast with the flexibility of the Jack & Jill service. Liam has a pre-school placement but last year due to ill health he attended school a total of 15 days between September and March.
Making a direct appeal to the Minister for Health to intervene, Aine Hall said, “Liam is our beautiful, precious son and brother to Sean and Niamh, who deserves your support. Underneath all of this disability, 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 & Jill have given us great support over the last 4 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? You may work long hours but so do we and 24/7 care for Liam literally means 168 hours a week. As Liam’s main carers we need a lot more support from the HSE to keep this up. Liam doesn’t have a voice, but if he did he’d say ‘Minister please do your job and help my Mam and Dad who are so tired and upset on my birthday. It shouldn’t be this hard.’”
Jonathan Irwin, CEO and Founder of Jack & Jill said, “We stand shoulder to shoulder with the Hall family today and we won’t walk away and abandon Liam. Unlike the Minister and the HSE, we won’t plead ‘No budget’ and walk away from sick children like Liam. We’ll have to find the budget and that’s where the Irish public have come to our rescue with donations of cash and mobile phones, helping us to raise the €36 million since 1997, while the HSE have given us €4 million in all that time. This culture of cuts in homecare has got to stop, otherwise children like Liam will end up back in hospital unnecessarily. It’s time to take stock at a national level and the complete lack of a national paediatric home nursing care budget has got to be addressed by Minister Reilly before the situation gets much worse.”
See all the comments posted on the journal.ie>>