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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.
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Give the child whatever he needs.
+1000
I agree, they need all the help they can get. Ireland has a habit of forgetting and neglecting its most vulnerable members
There for the grace of god go I! This could be anyone one of us, blank cheque should be issued in cases like this! Every good wish and strength to this family.
I don’t like commenting when a fragile life is in the balance but 4 hrs a wk, that’s just insulting!
Will someone ever grow a pair an pull the HSE asunder, quick!
The HSE are a disgrace of an organization, my son, who took part in the “no time to die” documentary, needs a seat that his doctor and physo both say he needs, it will help us stay out of hospital. The seat costs €800, the cost of an overnight stay in hospital is over €1000 a night.. Go figure.. We also get 4 hours a week home help, we save the Hse thousands of euros a year by keeping Sean at home and every time we need something they are uncooperative and dismissive and that’s only if you can get through to someone who’ll take ur call.. Disgraceful shower..
HSE Horse Shit Executive
Another wonderful show off support from the HSE. I’d offer my services for a few hours only with a 9 week old baby and a toddler in tow I’m sure I’d be more of a hindrance. I hope they get some answers and action quickly. No parent should have to bury their child at such a young age never mind 2kids and then have the HSE mess then about when they should be having as much of what precious time is left with their son. Heartbroken for them.
4 hours a week is an absolute disgrace
Give the family whatever help they need let the time they spend together be special.
As the mother of a special need child I can say that the support of the carers and nurses who work with these kids is amazing, but the ‘suits’ in the HSE can make everything so heartbreakingly frustrating. Easy for them to make policy decisions from their office, they should look the sick child in the eye when they tell them they won’t help them.
So sorry to read this story.and we moan about small things.will pray for all the family.
Very sad story – you can follow Tony on twitter too @beeforbattens
Not surprised at all, they seem to have a policy, that if’s a life threatening situation of a child, they, meaning management, are not wiling to help. As someone who has been there and child survived all the odds, I empathise
What is wrong with our country when parents of seriously ill children or children with very severe and complex needs have to beg on their knees to get even a little bit of support to allow them look after their loved ones at home, while saving the HSE thousands by not putting them into hospital or care.
The HSE are an absolute disgrace this poor boy an his family need all the hours they can get. My taught’s an prayers go out 2 them.
This is absolutely heartbreaking and frustrating for this family who have already grieved enough for their daughter.HSE are disgusting..give this family time to treasure their son and give them what they need and undoubtedly deserve!!
If the amount wasted on people who don’t need it,and we all know some of these was spent on those that do need it there would be plenty to go around I’m sure.
kathleen lynch .labour got every thing she needed without begging for it when she was in horpital
Can one of our fearless TDs request a break down of the administration costs dealing with this tragic case. I’d put a safe bet there’s 100 hours+ per week @€100 ph being spent “administering” the poxy 4 hours a week this boy and his family get. Disgusting
Would jack and jill organization have a role with this family ?
This is disgraceful but not at all surprising. Is it not enough that these parents are nursing their little boy in the knowledge that he will die soon. Surely, they are entitled to make that process as easy as possible for themselves & with all the resources they require in place but no not in this country. Shame on this country & our politicians if theres a wrong way to do things you choose to get it wrong continuously. Appalling…..
I have followed this families story ;we have a daughter with siminalar condition who was perfect up till three yrs old ,it is hard enough 2 deal with the fact we will lose her never mind this poor family who will hav to go through this twice.I Wish they wud get all the help they need because no
body knows only us parents how hard it is to deal with this sadness and still try to give these precious children a quality of life for the short time they’re with us.noreen sligo
Feel so sad reading this :-( I would offer my time to go and help on my days off if I could the HSE are well out of order give this family more help and stop being so unfair to them.
Terrible and shocking story as usual. But remember the HSE purpose is to find employment for health care professionals. Likewise the Department of education is there only to find employment for out of work teachers. Once you get that clear in your mind you can start to understand why stories like this are not uncommon.
This is just disgusting. This family have gone through so much and should have every help and resource available to them to allow them to spend some precious time with their very ill child.
They should not have to deal with this additional heartache. Where is the humanity in the HSE. No family should have to endure this.
Patients are not health care record numbers – they are human beings, sons and daughters, who deserve dignity and respect.
This is so wrong.
The jack and jill foundation help more familys than the hse for less money now that says a lot anyone see the director if the jack and jill foundation on the bredan o’connor show insightful stuff
I’m seriously getting pissed off with this country attacking the elderly and vulnerable. Why cant we have it written into our constitution that both groups are protected always, lets lead the way for once. I want these groups “fed” before anyone else!!!! For gods sake what is happening to this country.
If not for the kindness of strangers…I have experience of looking after a terminally ill baby at home after she was discharged from hospital. It was only for six weeks but were if not for the Jack & Jill Foundation, we could not have survived the first week.
Like Tony Heffernan says, it’s just time to have a shower, a sandwich, catch 40 winks, recharge so that the time spent with your child is not time spent so exhausted and stressed that you cannot operate beyond what the child needs. They need to be able to focus entirely on Liam now, to enjoy the limited time they have left with him and harness as many good memories from here on in to sustain them in the years ahead.
To think that they are having to waste precious time and energy trying to get a few hours help is heartbreaking.
We need to get a nurse for Liam!
It amazing how quiet politicians are, and how their consciences are not bothered, iam thinking of those who voted against the protection of life during pregnancy bill.
I’m really getting fed up with this official, mealy-mouthed, safe speak, politically-correct bo***x. Notice no-one is accountable, “procedures” are being followed, everything is done to deflect criticism and accountability. I notice a number of statements from HSE groups referring to “services according to assessment”. If you read between the lines it’s not what you NEED but what they “deem appropriate”.
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