Ben Connolly in Portlaoise hospital
Disabled Laois boy Ben Connolly cannot be cared for by his own nurses when he needs them most, when he is sick in hospital.
Ben, 9, from Mountmellick has a rare life limiting syndrome that leaves him with no muscle control. He is unable to sit, eat or speak. Seizures can be caused by a change as small as just waking up, so Ben needs 24 hour care.
“If Ben gets a seizure he needs rescue medication which is hard on his little heart,” explains his granddad Con Farrell.
At home Ben's mother and full time carer Nicolette Farrell is supported during the day with agency nurses paid by the Health Service Executive.
Ben’s nurses are from the agency Communicare. Mr Farrell explained why they cannot continue their care when Ben is in hospital.
“The hospital told us that Communicare could send in their nurses, but they couldn't give medicine. Communicare said they can’t do it because there is no service level agreement between it and Portlaoise. There is one with other hospitals so why not Portlaoise? There is more than Ben with very special needs, many others would benefit too,” he said.
In November Ben got very sick and was admitted to Portlaoise hospital.
With hospital nurses unable to devote constant time to one patient, and agency nurses not covered to work there, it meant that Nicolette barely left his side for almost the full 8 days and nights he was in hospital.
He described the effect it has had on his daughter.
“Nicolette is near exhaustion. She has spent nine years caring for Ben, yet when he needs help most in hospital with the extra stress of not being well, they withdraw the service. That's the time she is at her most vulnerable in a state of despair, not knowing if her child is going to pull through,” he said.
He praised the staff in Portlaoise hospital.
“The nurses are absolutely brilliant in Portlaoise, this is just a little logjam,”Mr Farrell said.
Ben has since recovered and is now back home.
“He is still on some oxygen but much improved,” his grandad said.
The HSE declined to comment.
The Ben and Jake Connolly Trust are fundraising to build a fully accessible house in the names of Ben and his late brother Jake, who died aged 3 from the same rare Allan Herndon Dudley syndrome.
It is hoped that the house will be complete by Spring 2019 in time for Ben to enjoy the remainder of his life in comfort. In time it is hoped to become a haven for other children in similar situations.