Trust between families and medics 'inevitably affected' following autism revelations

According to 'RTÉ Investigates', the Department of Health has been using confidential information to build dossiers on children with autism who were involved in legal actions against the State. File picture: Sam Boal/Rollingnews.ie

A group representing families of children with special educational needs has called on the Medical Council to investigate whether there were possible breaches of confidentiality that led to the compilation of dossiers within the Department of Children.

The DCA Warriors, a group with more than 27,000 members, said the revelations, as revealed by RTÉ Investigates last week, would "inevitably affect the necessary trust that families place in their clinicians".

There has been strong condemnation of the department since the programme aired, although the department stressed it had already looked into the allegations raised. 

It said it had conducted its own internal legal review late last year, which found that nothing illegal had taken place.

The DCA Warriors, first formed from parents frustrated at the difficulties in accessing the state domiciliary care allowance, said it was highly likely that some of its members' cases are likely to be among the dossiers gathered by the department.

It also said ministers Stephen Donnelly and Norma Foley should contact the families involved.

The Department of Health said the sharing of such information was 'normal practice' when State agencies were joined in litigation. Picture: Sam Boal/Rollingnews.ie

"We are extremely concerned that the families involved in litigation back in the early to mid-2000s had to find out in the media that secret dossiers were compiled and that there appears to have been significant breaches of data protection and GDPR," the group said.

"Such a breach of doctor/patient confidentiality is extremely concerning to our members. This is particularly so, because the litigation always involved health or educational services being denied for a child with disability. Their families were generally in a time of crisis and as a last resort had to engage in litigation."

Independent inquiry

It called on the Medical Council to carry out an independent inquiry into any alleged breaches of confidentiality.

The Medical Council has already expressed "great concern" at what was revealed last week.

For its part, the Department of Health said the sharing of such information was "normal practice" when State agencies were joined in litigation.

But the DCA Warriors echoed calls already made elsewhere that the terms of reference given to the senior counsel who conducted the review for the department last year be published and queried when the HSE would engage with the families affected.

It called on the ministers to immediately contact the families at the centre of these allegations, and for the immediate release of the report commissioned by the Department.

Margaret Lennon, a spokesperson for the DCA Warriors, said members of the group were wary of speaking to professionals, including home supports, for fear that information might be relayed elsewhere.