Mother and autistic son call on Department of Health to apologise for compiling ‘secret dossier’

A mother and her autistic son have called on the Department of Health to apologise for compiling a “secret dossier” on them for use in a legal action.

Speaking for the first time on RTÉ Investigates tonight, Adam Keogh, now aged 22, said: “They were still gathering information when I was finishing secondary school, and the case only covered primary school”.

“They had no reason to research anything past primary school, and they didn’t even have the justification to do what they did back then. But what they did once the case boundaries had expired, was horrific. They had no reason to do it because there was no case then any more,” he said.

Earlier this year the Data Protection Commission (DPC) ruled the dossier amounted to serious interference and imposed a fine on the Department of Health. Despite this, the family have never received an apology.

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The dossier was compiled after the family of Adam Keogh, then aged five, took a legal action alongside several other families against the State to secure special needs education for their children.

Their case was not for compensation but to secure special needs supports in primary school. Adam got some supports and the case lay dormant.

Twelve years later the Department of Health continued to work on its legal strategy to manage the cases taken by the families.

Without telling the families or requesting consent, the Department of Health asked the HSE to share what it had on file on the dormant cases, including medical notes.

After reading the Data Protection Commissioner’s report, the Keoghs feel there now needs to be accountability.

“When you have a child with different abilities, everything is a struggle. It’s made difficult in terms of diagnosis, it’s difficult in terms of getting extra payments like disability allowance, carers allowance, anything you need to provide for your child,” Adam’s mother Sharon Keogh said.

“It’s impossible to get speech and language, physiotherapy, all those things. You have to fight for everything.

“I never got an apology. And nobody else got an apology. Nobody got an apology.”

Tony Delaney, deputy data protection commissioner, said: “Our decision says unlawful things happened from a data protection perspective. They broke the law, they’ve been penalised for it, they’ve been reprimanded for it”.

“The Department got caught out very badly in this case, but others could be doing the very same thing today. And that’s why they all need to take stock,” he said.

The sharing of the family’s private patient information would have remained secret had it not been for a whistleblower in the Department of Health.

In 2020, Shane Corr, a senior civil servant, realised he could see the families’ files.

The Department of Health had obtained documents which contained confidential and sensitive details from a consultation between the Keogh Family and their HSE doctor without the family’s knowledge or permission.

“I saw something that frankly I can only describe as shocking ... There was no way once I saw the piece of correspondence, I was ever going to let that lie,” he said.

In March 2021, he became a whistleblower and revealed that confidential information on the wellbeing of people and their families was being shared, and stored, in departmental dossiers.

The Department of Health said what had been done was part of normal litigation and was “entirely lawful, proper and appropriate”.

The DPC’s report found the practices were excessive, lacked transparency and had no clear policy. The DPC report also criticised the level to which people in the Department of Health, with no involvement in litigation, could access the electronic files.

RTÉ Investigates report will air Thursday 28 September at 9.35pm on Prime Time, on RTÉ One and RTÉ Player.