More families of children with spina bifida considering legal action to get medical records

More families of children with spina bifida considering legal action to get medical records

Amanda Coughlan Santry, cofounder of the  Spina Bifida Hydrocephalus Ireland Paediatric Advocacy Group. File picture: Gareth Chaney/Collins

At least 15 families of children with spina bifida who are patients at Children’s Health Ireland are considering legal action to get access to medical records in the face of unacceptable delays.

Last week, the High Court heard that a family had been told it could take up to 12 weeks to release their son’s records.

Luke Ryan’s parents wanted to seek a second opinion on his care, due to concerns about an unauthorised device, a spring, used during his spinal surgery in CHI at Temple St.

Amanda Coughlan Santry, co-lead Spina Bifida Hydrocephalus Ireland Paediatric Advocacy Group (SBHPAG), said other families face similar delays.  

“Upwards of 15 families have informed me they intend to follow suit and go to court for their medical files," she said. 

“They need those files to have them externally reviewed, because they are so afraid of what’s going on with their children’s care.” 

In Ireland, where electronic health records are not yet in use, records can be requested through Freedom of Information queries. This should take 28 days under legislation.

“We had a family apply two days ago for their medical records, and they are still getting the same automated response ‘it is going to take 10 to 12 weeks',” she said.

Amanda Coughlan-Santry and Una Keightley, co-founders and co-leaders of the Spina Bifida Hydrocephalus Ireland Paediatric Advocacy Group, and Claire Cahill, co-founder of the Scoliosos Advocacy Network. File picture: Gareth Chaney/Collins
Amanda Coughlan-Santry and Una Keightley, co-founders and co-leaders of the Spina Bifida Hydrocephalus Ireland Paediatric Advocacy Group, and Claire Cahill, co-founder of the Scoliosos Advocacy Network. File picture: Gareth Chaney/Collins

Families have also expressed concern about potential increases to already long waiting times in the midst of this turmoil.

The HSE has been asked by Health Minister Stephen Donnelly to consider bringing specialist doctors or surgeons from abroad to address this, a spokeswoman said.

“A further update in this regard will be provided soon,” she said.

However, Ms Couglan Santry said: "Adequate supports and resources have not been provided to the surgeons we have here. Why would they do it for another surgeon, from outside the jurisdiction? We have some of the best surgeons in the world here.” 

A HSE-commissioned external review, led by Liverpool-based Selvadurai Nayagam, has begun initial work. However, SBHPAG and its allies, Scoliosis Advocacy Network, are not convinced this is the best approach.

“We have participated in reviews, we have done this and we’ve sat on boards and given feedback to CHI,” she said.

“How many more times do they expect us to follow the same path, in the same proactive manner we have been doing and still receive the same outcome? Nobody is showing us that this is anything different.” 

Spina Bifida Hydrocephalus Ireland CEO Gerry Maguire met Dr Nayagam last week and said they are “cautiously optimistic” he will address wider areas than only surgery.

“We wanted to tell him, chapter and verse, how bad services are for members,” he said. 

He was taken aback by it, in seeing the disconnect between surgeries and the community, that secondary care doesn’t communicate with primary care which resulted in chaos for members.

He said Dr Nayagam asked him to encourage parents to talk to him without any commitment being made.

SBHI shared that invitation on social media but so far no-one has accepted.

“I don’t know whether that is because parents are so disillusioned with the whole system by now,” Mr Maguire said.

More in this section

Lunchtime News

Newsletter

Keep up with stories of the day with our lunchtime news wrap and important breaking news alerts.

Cookie Policy Privacy Policy Brand Safety FAQ Help Contact Us Terms and Conditions

© Examiner Echo Group Limited