The chief executive of the HSE, Paul Reid, has said the Executive will follow through and investigate details of the Department of Health’s actions in maintaining dossiers of sensitive information on children with autism who were involved in legal actions against the State.
Trust must be the cornerstone of the health service, he told RTÉ radio’s Morning Ireland. Having seen the RTÉ Investigates report, he said he has sought information and will follow through.
The actions of the Department were revealed by a ‘whistleblower’ on RTÉ Investigates on Thursday night.
The dossiers, which included the sensitive medical and educational information of children involved in long-dormant court cases, were built and maintained over a number of years without the knowledge or consent of parents.
If it has been done we will get to the bottom of it.
Nothing could be right about the sharing of sensitive information inappropriately, he added. “If it has been done we will get to the bottom of it.”
It could not happen that confidentiality was broken, Mr Reid said.
Later on the same programme, the Children’s Ombudsman, Niall Muldoon said while the actions of the Department may have been lawful, they were “absolutely not” appropriate.
It was not appropriate that private information was being gathered solely with the purpose of putting pressure on families to drop legal cases, he said.
Mr Muldoon added he was concerned that such actions were systemic as the files remained open for years through different staff.
The actions of the Department were an abuse of power, he said, questioning whether similar actions has occurred in other cases involving children, maternity cases or school issues.
Mr Muldoon said he wanted the practice to stop as it had to be damaging to the trust people had in services.
The question had to be asked who gathered the information and why?
Sinn Féin’s health spokesperson David Cullinane called for an independent inquiry into the matter, saying one similar to the Scally inquiry into CervicalCheck in its scope and duration, should be carried out.
It was alarming that very sensitive information was being kept because parents had taken legal action to get the services their children needed, he said.
RTÉ Investigates reported the work was done with the cooperation of the HSE and the Department of Education, and involved detailed information sourced directly from confidential consultations which the children and their families had with doctors and other professionals.
The deputy CEO of autism charity As I Am, Fiona Ferris has said questions needed to be answered “internally and externally” about the actions of the Department.
Speaking to the same programme, Ms Ferris said this was “yet another breach of trust”.
The actions of the Department would raise concerns for families and would make them question their trust in the team working with their children.
Echoing Mr Cullinane's calls, Ms Ferris said there was a need for a full legal review, along with an examination of the culture and ethics surrounding the actions.
“How was this allowed to happen? Will the families be informed?,” Ms Ferris asked.