THE PARENTS OF a five-year-old boy with the terminal illness Battens Disease are concerned about the hours of care their son is receiving from the HSE.
Tony and Mary Heffernan care for their son Liam (5) around the clock, and currently have four hours of HSE home help a week. Following a meeting with the HSE last week, they were offered an additional 10 hours, and are waiting on an official date for when that will begin.
Speaking to TheJournal.ie, Tony – who runs the charity Bee for Battens – said Liam needs someone by his side 24-hours a day, and that either he or his wife fulfils that role. Having additional care would enable them to sleep, use the bathroom and allow them more precious time with their son.
He said he and his wife are concerned that the HSE has not recently undertaken an Assessment of Need for their son despite the parents’ request for one.
Tony said they had made a number of formal complaints to the HSE regarding the Assessment of Need process. He said that when Liam has passed, he would consider taking legal action against the HSE.
“We’ve been making them aware of Liam’s deteriorating condition for over two and a half years,” said Tony of the HSE, adding that an Assessment of Need had been done for Liam in 2010, and this assessment was up for review in 2012 but was not done.
He said he subsequently made a request for such an assessment late last year, but was told that it wasn’t in line with the national practice of the HSE to use the Assessment of Need framework and that they would assess Liam through the HSE Early Intervention Scheme. Liam is receiving services through this scheme.
Meeting
Tony said the HSE has been aware of Liam’s condition and the fact he is not expected to live very long. Liam’s older sister Saoirse also died from the same condition at the age of five.
Having additional help benefits the family in a number of ways. “It allows us to go for toilet breaks if there is only one person with Liam. A bit of time to eat sit down at a table and eat. He requires 24-hour care. He is blind, he has 30 – 40 seizures a day, he is immobile, he cannot walk on his own.”
It is an “unsustainable situation” for the dedicated parents, who take turns sleeping next to their son. “We have requested over three years that they start planning for Liam’s demise,” he said of the HSE.
Tony said the family are now 18 months behind in planning for Liam, and they believe he has only months left to live. Saoirse died aged 5 years 7 months and 14 days, while Liam is 5 years 1 month and 3 days.
“Time is not on our side,” said Tony. “Let us get a few poxy hours… allow us to bury him with a bit of dignity.”
Knowing that their son will die prematurely means the parents want to “spend it with him rather than yawning beside him”.
HSE response
A spokesperson from the HSE said in a statement that the HSE’s Community Services in Kerry are liaising with the Heffernan family on an ongoing basis.
Liam, and his family, are currently in receipt of significant support from the HSE and HSE funded agencies. Liam’s care is regularly assessed to ensure the level of support is appropriate and adjusted according to Liam’s needs; the latest such assessments have been done this week and supports offered accordingly.
Community services staff continue to work in collaboration with the Heffernan family and remain available to them to address any concerns they might have, said the HSE in the statement.
The HSE added that it has a robust comments and complaints procedure in place to ensure that patients or their next of kin can raise any concerns or issues and have them addressed.
To embed this post, copy the code below on your site
have your say