Tuesday 16 January 2018

Doctors in heartfelt plea for funding to help dying children

Louise Hogan

Louise Hogan

THE country's only hospice for dying children yesterday made a desperate appeal for more state support as it struggles to care for growing numbers of gravely ill patients and their families.

The hospice needs €1.4m in annual state funding to run its services -- but so far the HSE has refused to say if it will commit to providing the cash.

More than 100 youngsters and their families have been cared for at LauraLynn House since it officially opened last September and medics are treating more complex cases as the months go by.

Despite this, it has had to deal with dwindling resources.

Philomena Dunne, chief executive of the south Dublin hospice, warned the service could only continue to provide a lifeline for families due to the generosity of fundraisers.

The service costs €2.37m a year to run. The hospice is in the grounds of the Children's Sunshine Home in Leopardstown, a charity that also supports the families with respite, home support and end-of-life care.

The Sunshine Home receives just under €4m from the HSE and it diverts around €800,000 of this funding to the hospice.

But in the past three years, the HSE funding to the Children's Sunshine Home has been cut by 16pc.

"People don't walk away from sick children and we'd like the Government not to walk away from this and to understand that these children do exist. They are not on the radar," Ms Dunne said.

"The money will run dry and people need to understand this is a service that the State needs to support.

"These children are going to increase in number and it can't be sustained constantly by charity."

It is estimated that 411 terminally ill children around the extended Dublin, mid-Leinster and north-east region needed end-of-life care in 2011. This is expected to rise to 479 over the next decade.

More than 1,400 children are living with life limiting or threatening conditions and around 350 children die in Ireland each year.

Families are travelling from as far away as Donegal to use the Dublin-based service.

Ms Dunne said many terminally ill children were in costly acute beds in hospitals while services could instead be delivered in respite care.

Chaos

She said their latest meeting with the HSE took place this week.

"We are being told if we can get the minister to put it into the estimates it will be easier," she added.

John McWade, whose terminally ill six-month-old son Leo is being cared for in the hospice, said he had witnessed "waste, lethargy, disorganised chaos" in his dealings with the HSE.

Dr Joanne Balfe, consultant paediatrician at Tallaght Hospital and LauraLynn hospice, said taking home a very sick child could be a frightening experience for some families.

Many children in palliative-care situations are suffering from extremely rare conditions, have profound disabilities and can be sick and close to death for many years.

A spokeswoman for the HSE last night said they were in discussions with the Children's Sunshine Home over the funding of the new service at LauraLynn house initially for 2013.

"This process has commenced and different avenues are being explored. The HSE is committed to the process and will continue engagement throughout 2012," she said.

A spokeswoman for the Department of Health last night said it had not received a formal request from the LauraLynn Home for funding but was aware discussions were taking place with the HSE. The department highlighted the health budget had been slashed by €700m this year.

"The HSE has already earmarked all available funding for use. It is an unfortunate reality that fresh funding for the running of a medical facility can only be secured by removing it from somewhere else," she said.

Irish Independent

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