No 'clear criteria' for international surgery initiative, advocates warn

Co-founder co-lead of the Spina Bifida and Hydrocephalus Paediatric Advocacy Group Úna Keightley said while they welcomed progress on a travel plan first announced last September, families are confused. Picture: Gareth Chaney/ Collins

Parents whose children have spina bifida and scoliosis are expected to make huge decisions around travelling as far as the US for treatment despite getting scant or vague details about what it entails, patient advocates have warned.

It was announced last month that hospitals including Morgan Stanley Children’s Hospital in New York and Great Ormond Street Hospital in London would be involved, following growing fears that Children’s Health Ireland (CHI) is unable to address waiting lists as numbers rise again.

Úna Keightley, co-lead on the Spina Bifida and Hydrocephalus Paediatric Advocacy Group, said while they welcomed progress on a travel plan first announced last September, families are confused. “They are ringing parents and asking, ‘Would you like to go to New York?’ and parents say, ‘But what is it, what does that mean’ and they say, ‘We will call you next week’,” she said.

“There doesn’t seem to be a clear criteria for who is going. They’re saying it’s for children who are not complex but there is already a non-complex route here through the Beacon (Hospital) and Blackrock (Clinic).”

Some non-complex children are already receiving care at those private sites funded by the State, said Ms Keightley. “People are asking, ‘Can you give me in writing what is on offer in New York’,” she said, adding parents need detail on these “huge decisions”.

It is unclear where accommodation will be provided or for how many adults, Ms Keightley said of the families. These children need “ a massive bag” of medication and equipment when travelling, she added.

In response, CHI acknowledged travel is not suitable for all children involved and repeated predictions made in July that “dozens of children and families” will travel.

Families were contacted by phone to explain the international outsourcing initiative, to be given the opportunity to ask questions, and to give them time to consider if it is right for their family.

“Families were then called again a week later to go over their decision — if they wish to go ahead with their surgery abroad or if they wish to wait for the surgery in CHI.”

The hospital was unable to comment on finances or accommodation.

The Department of Health said these details are the HSE’s remit. The HSE has been asked to make sure “any child who does travel for their surgery is supported by a seamless and comprehensive support package, which will include flights, accommodation, and funding to cover expenses”.

The spokeswoman said these details are shared with patient representatives on the Paediatric Spinal Taskforce. However, a significant number of families are not connected to this taskforce.

Some groups, including Spina Bifida and Hydrocephalus Paediatric Advocacy Group and the Scoliosis Advocacy Network, have stayed away to indicate frustration at what they see as the limited role this taskforce can play in bringing reforms to healthcare in CHI itself.

In July there were 287 children on spinal waiting lists at CHI, up from 281 the month before and 246 in May.

Health Minister Stephen Donnelly recently admitted €19m in funding given to CHI for these children was used more broadly to address other issues as well.