A Co Kildare couple whose 25-month-old twin sons had tracheostomies in 2011 and came home from hospital last July, fear they will have to bring them back to hospital as the homecare package sanctioned by the HSE is "falling apart", they say.
When Dermot and Denise Guihan from Leixlip brought Shay and Finn home from Temple Street children's hospital, they were "over the moon". The two boys have a rare disorder, Pfeiffer syndrome, which is characterised by a premature fusion of parts of the skull, meaning it cannot grow properly. They have had 22 operations between them, including tracheostomies to enable them to breathe. They need 24-hour specialist care. If their tracheostomy tubes become blocked they must be suctioned or they will stop breathing.
The homecare package includes day and night nursing. A staggered discharge was planned with agency nurses to provide care. From the beginning the Guihans say they have had problems, with nurses turning up late without apology and sometimes not turning up at all.
Complained
"In the second and third weeks after the boys got home there were two no-shows. There are times we'd get a call from the agency saying they had no nurse for the following day. When we complained, they'd just say, 'Sorry, we're doing our best' or, 'We can't guarantee there'll be a nurse available'," says Denise.
They say that when they complained to the HSE they were told: “That’s the nature of agency work. There just doesn’t seem to be any consistency and we don’t know who is managing the package. We are out of the loop,” says Denise.
“I cannot begin to describe the level of stress and despair we constantly feel. We have been under this extreme pressure for two years and every little thing is an ongoing battle.”
The two boys are in Laura Lynn children's hospice for respite as Denise has had a baby boy in the past week. They are due home tomorrow morning and the homecare package, as set out until the end of December, has a number of gaps. Nothing is in place after that.
"I have just had a C-section, we have a new baby and Dermot is not Superman," she says. "The only option they offer us when there's no nurse is to bring them back into Temple Street. If things don't change that may be what we'll have to do."
No comment
A spokeswoman for the HSE said she could not give detailed comment on an individual family's case. "We are working with the nursing agencies and with the family."
Nurse on Call, one of the agencies involved, said in a statement it was inappropriate to comment in detail on this individual case as overall care services are provided to the family through the HSE.
“Nurse on Call has received no complaint regarding any of its own nurses being late for work but believes that no nurse ever seeks to be late for work and that nurses are acutely aware of the needs of patients.
“Nurse on Call appreciates the stress that parents often experience in caring for any child who is ill or suffering and is committed to providing appropriate and diligent care at all times,” it said.
A second agency involved with the family had not responded to a request for comment at the time of going to press.
