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Survivors consider legal action to get health records amid 'bizarre' row with department

Survivors of mother and baby institutions have been told to submit FOI requests to get access to their records, despite already applying under GDPR.

An image is projected onto Sean Ross Abbey in Tipperary as part of the Herstory Light Show on St Brigid's Day 2021
An image is projected onto Sean Ross Abbey in Tipperary as part of the Herstory Light Show on St Brigid's Day 2021
Image: PA Images/Alamy Stock Photo

A NUMBER OF Mother and Baby Home survivors are considering legal action in a bid to gain access to their medical records.

The Journal has learned that the Department of Children, Equality, Disability, Integration and Youth (DCEDIY) this week contacted a number of survivors informing them they may be able to get access to their health records if they submit a Freedom of Information (FOI) request.

These survivors had previously submitted a Subject Access Request (SAR) under General Data Protection Regulation (GDPR) requesting the documents.

However, they were told they could not be given access until they nominated a GP who would receive the records first and then decide whether or not it was “appropriate” to pass them on. Survivors of mother and baby institutions have said the GP stipulation infantilises them and is also at odds with GDPR.

Survivors have in recent months been requesting access to personal information, including medical records, held by the DCEDIY which became the data controller for records held by the Commission of Investigation into Mother and Baby Homes after the Commission dissolved at the end of February.

Under Article 15 of GDPR, people have a right to submit SARs if they wish to be given a copy of any of their personal information which is being processed by those in control of it.

In a letter sent by the department on Tuesday, and seen by The Journal, a number of survivors were informed of another possible route to gaining their medical records without the involvement of a GP.

Screenshot 2021-09-15 09.12.10

The letter states: “We have been unable to provide you with your health data as you have not provided the Department with contact details for a health professional who has most recently been involved in your clinical care. I would like to take this opportunity to offer you another possible option to receive your health data if you wish to access it.

“Separate to the GDPR and SARs, there is an alternative legal avenue open to you through which you may be able to access the health data we hold about you, without providing the Department with contact details for your health professional. I am referring to the right of access under the Freedom of Information Act 2014 (FOI Act).

Submitting an FOI request for the health data relating to you that has been withheld under the Data Protection Regulations will provide a route by which you may also access the health data concerned. Under FOI, the involvement of a health professional in relation to medical records is discretionary rather than mandatory.

“Therefore, if you wish to access your health data under the FOI Act, the Department may be in a position to make the information available to you directly, without the necessity of liaising with your medical professional. If you wish to be given access under the FOI Act to your health data which has been withheld under Data Protection Regulations, please respond to this letter at your earliest convenience.”

‘Despicable and bizarre’

Noelle Brown, an adoption rights campaigner who was born in Bessborough mother and baby institution, was among those to receive the letter. She said the latest development is “despicable” and “ridiculous”.

Brown told The Journal: “It just doesn’t make any sense, it’s kind of a bizarre situation. What do they mean by ‘at our discretion’?, as in ‘we might do this for you’.

“We already filled in an SAR form, now we are asked to fill in yet another piece of paper. We shouldn’t have to jump through hoops.

This is totally ridiculous behaviour. It is despicable and so utterly patronising and discriminatory. It’s always about buying time – not even buying time, it’s about delaying and denying. It shows utter disrespect.

Brown is among a number of women who are considering legal action in a bid to get access to their medical records without the involvement of a GP.

“We cannot continue to be treated like this, it’s a joke,” she said.

Brown said she understands why some survivors nominated a GP in order to get access to their records, saying she considered this herself but decided against it.

“I thought ‘I could give in and nominate a GP, but then I thought ‘no’. It can’t be one law for one person and another law for someone else.”

She questioned whether the department is breaching GDPR rules, and questioned why some survivors have been informed of the FOI ruote by the department while others have not.

“Are they only contacting people who are vocal, people who shout the loudest? If so, that’s appalling. It’s a disgusting way to behave – divide and conquer. Some older people are not even online, let alone aware of [FOI requests].”

The department has denied this, saying that all individuals have been informed of the FOI option: 

“The Department has advised all requestors of the option of seeking access to health data under FOI as an additional or alternative option to access their data. Individuals may choose to avail of the option they prefer or both options if that is their preference,” a statement noted.

’40 years of delay tactics’

Mary*, a survivor who gave birth in one of the institutions, also received the letter on Tuesday. She told The Journal the latest development is “absolute nonsense” and amounts to “pushing the can down the road again”.

Mary wanted to raise her daughter but felt compelled to give her up for adoption in 1980, despite repeated attempts to keep her. She is still trying to reconnect with her child over 40 years later.

“Every time I went asking questions about my baby, every door was closed, I was always knocked back. Nothing has changed, it’s the same shite that’s going on even today. Fill in this form, then that form, then another form.”

Whenever she sought information about her daughter over the years, Mary said she was given incorrect information and routinely told it was not “the right time” to make contact.

She told us that if she was trying to get access to records by herselves she’d have “given up” a long time ago, but she has the support of her other daughters.

If it was left to me, I’d have given up, but my daughters are a force to be reckoned with, they won’t give up. I can understand why a lot of people give up, but my daughters won’t. There are too many of us now, we won’t go away, it’s not just one generation speaking up.

Mary plans to submit an FOI request in a bid to get her medical records but doesn’t hold out much hope that this route will actually work. She too is considering legal action.

“Without a doubt, it’s a delay tactic,” she said of this week’s letter.

“This has been going on since day one – not since the day the Commission was set up, but since the day our babies were taken for adoption. It’s been 40-odd years for me.

“I will consider legal action, it’s never-ending the other way. I could be long gone before it’s resolved. I might be six feet under, but my daughters won’t give up.”

Advice from the Attorney General

When survivors’ concerns were put to the department, a spokesperson told The Journal: “The Minister [Roderic O'Gorman] has previously acknowledged the difficulties for survivors created by the health information requirement, and is engaging with colleagues as a matter of urgency to progress regulations which would allow for the release of information without the requirement for consultation with a health practitioner.

“Currently, under Data Protection Regulations, a data controller who is not a health practitioner is required to consult with an appropriate health practitioner before supplying any health data to the data subject concerned.

The Department, as a data controller, must apply the Regulations when records contain health data. The Regulations do not enable the exercise of any discretion by the data controller and require consultation with an appropriate health practitioner in all cases.

“What this means in practice, for the moment, is that where health data is included in the data due to be provided to a data subject, the Department is releasing all other non-health related information in the first instance.”

The spokesperson added that Minister O’Gorman is “not satisfied with this requirement and is working in conjunction with the Minister for Health, to amend the regulations”.

“The Minister regrets any delay in releasing information to the relevant parties; however, it is vital that all matters relating to the records are done lawfully.”

They continued: “In the interim, and in order to facilitate the timely release of information, the Department is also making requestors aware that Freedom of Information legislation, which is separate to the General Data Protection Regulation, provides an alternative route or additional route by which they may also access the health data concerned.

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“Under that legislation, the involvement of a health professional in relation to releasing health records is discretionary rather than mandatory. The Department is seeking to ensure that individuals are aware that it is open to them to make a request under both GDPR and FOI if that is their wish and the Department provides health data to individuals in accordance with each legislative framework.”

The DCEDIY previously said its stance was based on advice received from the Attorney General. The department declined to release the AG’s advice, citing “legal professional privilege”.

However, a data expert warned that the department may be at odds with EU regulations if it does not directly give survivors copies of their medical records.

Solicitor Simon McGarr said that introducing new regulations is not necessary because GDPR, as a regulation in EU law, supersedes domestic legislation.

McGarr told The Journal in July that if the minister does not disapply regulations at national level that impede the application of GDPR, his department would be in breach of EU law.

McGarr said, as data controller, it is O’Gorman’s “obligation to set aside the national law that is incompatible, that’s what the Court of Justice of the European Union says”.

The Court of Justice of the European Union (CJEU) previously ruled that bodies are “obliged to adopt all the measures necessary to ensure that EU law is fully effective, disapplying if need be any national provisions or national case-law that are contrary to EU law”.

“This means that those bodies, in order to ensure that EU law is fully effective, must neither request nor await the prior setting aside of such a provision or such case-law by legislative or other constitutional means,” the ruling continued.

*Name changed for privacy reasons

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Órla Ryan

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