Donegal parents in Our Children's Voice, above, met with then-Health Minister Leo Varadkar in Dublin last year. Photo Bibi McGlynn
A controversial rule that restricted parents who were receiving respite for children with life-limiting conditions and complex medical needs to leaving the home for no more than 30 minutes is to be relaxed.
The relaxing of the rule is a result of an ongoing campaign by the Donegal parents’ advocacy group, Our Children’s Voice, to improve palliative care for children with life-limiting conditions in Donegal.
The group welcomed the decision but said parents of seriously ill children should not have been put through what they have over the issue in the first place.
Our Children’s Voice, who advocate for children with life-limiting conditions or high medical/physical needs, said the result is just one small step in the campaign for improved palliative paediatric home care.
Met with Oireachtas members, HSE
Representatives from Our Children’s Voice addressed a meeting of politicians and Health Service Executive management in Stranorlar last week to highlight the problems which exist within the services the HSE provides to children with life-limiting and complex medical needs, and to those under palliative care in Donegal.
Ashling Nibbs of Our Children’s Voice said the group have also received a commitment that the HSE will look at remodelling the current palliative care system for the children.
“This has been over two years in the making, and we have been engaged in this process over two years, trying to improve the service and care provided to these children,” Mrs. Nibbs said.
“In some respects, while the announcement is very, very welcome, we are actually quite annoyed that it arose in the first place, because this 30-minute rule was only implemented very recently and it caused a huge amount of worry and unnecessary distress.
"They were trying to change something that was not broken in the first place," she said. "While the news is welcome, it's only a very small step in what is quite a long process.”
The group is looking for changes to paediatric palliative care so that terminally ill children can be offered the opportunity to die at home and not in hospital. But they say the correct structures have to be put in place to allow the children to have the proper nursing care at home.
Mrs. Nibbs said the group welcomed the opportunity to let politicians hear about the issues parents are dealing with.
“This is the elephant in the room," she said. "Nobody wants to talk about a child dying, but it's the reality and it is happening in this county. Children have died at home in this county and the care was not what it should have been. They should be receiving the same level of care as an adult.”
HSE to ‘rethink and relax’ its plans
Sinn Féin Finance Spokesperson, Deputy Pearse Doherty, said he was delighted to have it confirmed by HSE management at last Friday’s Oireachtas Health Forum meeting, "that the executive has decided to rethink and relax its plans to introduce a 30-minute leave period from the home for parents and guardians of children receiving in-home palliative care in Donegal.
"The time rules would have seen parents and guardians only being allowed to leave the home for a maximum of 30 minutes during visits by nursing staff, after which they would have been required to return to their residence,” he said.
“Understandably, parents of children with complex needs have been deeply opposed to these plans to limit their rest periods to only half-hour breaks as many feel that 30 minutes is not an adequate amount of time away from the home to allow parents to re-charge or to take a break from the responsibility of having to provide round-the-clock care for children with such severe conditions,” Deputy Doherty said.
“I’ve been working closely with these parents, as well with representatives from the advocacy group Our Children’s Voice, and I have brought their concerns to both the HSE and the minister as it is clear that the plans were not practical nor were they being done with the best interest of these families in mind.”
Our Children’s Voice describe themselves on their Facebook page as a group of Donegal parents who are working “to give children who have life-limiting conditions or high medical/physical needs a voice that will be heard”.