Father of dying boy will sue HSE over ‘poor care’

A father whose daughter died of the rare, fatal Battens disease, said he will sue the HSE when his son dies of the same disease in the next few months.

After failing with the formal approach with the HSE, its gloves off time . From tomorrow we take the fight to a new level for our dying son.

— Tony Heffernan a DAD (@BeeForBattens) July 31, 2013

Tony Heffernan claims the family are not receiving proper, updated supports from the HSE for Liam, 4, and the care plan for Saoirse, who died in Jan 2011 at the age of five-and-a-half, arrived “three days after” her death.

The HSE has denied this and said care reviews being carried out and the family is getting “significant support”.

Mr Heffernan, who represents parents on the Government’s task force on rare diseases, said in the next few months he will be buying a white coffin to bury Liam and he will then sue the HSE to ensure the legal obligations for the care of children with rare diseases are met and to prevent this happening to any other family with a dying child.

“One thing we do not have here is a lot of time,” Mr Heffernan told Radio Kerry this morning in an interview to highlight the lack of what he claims is a suitable care plan by the HSE for Liam.

Mr Heffernan said he and his wife, Mary, were being denied their legal rights for proper palliative care for their sick child.

They were not looking for something “all-singing, all-dancing” but this weekend, for instance, they would be the “sole carers” for Liam, who has lost most of his sight and speech, who falls constantly, and now needs 24-hour watching.

“He has 20 to 30 seizures a day. He requires full-time care,” said Mr Heffernan.

Liam has been attending playschool and was provided with a special needs assistant while at school. However, Liam is dying, his father stressed yesterday.

“The child is dying. This is a fact,” he said.

Mr Heffernan, who has been working in Oslo, said he and his wife are now unable to leave Liam’s side.

The HSE had identified Liam needed “constant care, and supervision” but had not identified “who” was to do that care, he said.

He flatly denied HSE claims that additional supports had in fact been offered this week to the family.

He would be burying his child in the next few months, he said.

“This will not go away. When Liam is gone we will take legal actions.... I will fight this on behalf of everyone,” he said.

It is understood Liam’s multidisciplinary team of therapists, consultants, and nursing care met last weekend to update the care for Liam, but they had not managed to communicate this to the family.

Mr Heffernan, who buried his daughter Saoirse in Jan 2011, said he had not previously aired his complaints publicly. However, the care plan report for Saoirse arrived three days after she died. He had stopped the airing of a Prime Time programme which would have dealt with the failure to meet the needs of children dying from rare diseased because he could not bear to see her white coffin going into the ground, he told Radio Kerry’s Jerry O’Sullivan.

In a statement, the HSE said 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. The HSE also 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.”