Bethany Home survivors Joyce McSharry, pictured here as a baby, and her mother Emily Sheppey Joyce McSharry

Mother & Baby Homes: Just 40 survivors get health files amid row over GPs signing off on requests

The majority of survivors, 31, received the records via Freedom of Information requests, not GDPR.

FORTY SURVIVORS OF mother and baby institutions have been granted access to some of their medical files by the Department of Children, primarily through Freedom of Information (FOI) requests, The Journal has confirmed.

When the Commission of Investigation into Mother and Baby Homes wound down in February 2021, the Department became the data controller for records held by the Commission.

In the last year, many survivors have requested access to their medical files and other personal records held by the Department.

However, there is an ongoing row over whether or not a General Practitioner (GP) needs to sign off on the request before the files are given to the person in question. Many survivors have been unable to get access to their records, or have received heavily redacted files.

The Journal has learned that all 31 requests made via FOI requests to date have been granted or part granted (meaning some of the information is redacted).

Under Article 15 of General Data Protection Regulation (GDPR), people have a right to submit Subject Access Requests (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.

However, the Department has urged survivors to apply for their records via FOI, rather than under GDPR – something data experts have argued makes little sense.

Sixty-six SARs for medical records have been made by survivors or their relatives to date, the Department said. Of these, just 10 people were given their records.

These 10 people received their records “following consultation with the individual’s health practitioner in cases where such details were provided by the requestor”, a Department spokesperson confirmed.

The 41 requests responded to by the Department so far relate to 40 individuals, with one person opting to receive their health data under both GDPR and FOI.

As previously reported by The Journal, a number of survivors of mother and baby homes and similar institutions are considering legal action in a bid to gain access to their medical records.

The Department has said a GP must sign off on an individual receiving their own records, under regulations in place since 1989 – at odds with the view of some legal experts.

Minister for Children Roderic O’Gorman has called for new data protection regulations to be implemented so survivors can be granted access to their health records without the involvement of a GP.

Solicitor Simon McGarr previously told The Journal that introducing new regulations is not necessary because GDPR, an EU regulation in place in Ireland since 2018, supersedes domestic legislation.

McGarr said the Department may be in breach of EU regulations if it does not directly give survivors copies of their medical records without the involvement of a GP.

The European Commission recently opened an investigation into the Government’s refusal to give survivors access to their health records under GDPR, after McGarr made a complaint on behalf of a client.

The Birth Information and Tracing Bill – which aims to give adopted people access to their birth certs, early life information and medical records – is due to be published later this month prior to being voted on in the Oireachtas.

‘My mother was alive but I was told she was dead’

Joyce McSharry has applied for access to her medical records from the Department but is yet to receive them. She does not believe a GP should be involved in the process.

The 70-year-old, who moved from Dublin to Laois in late 2019, told The Journal: “Put it this way, my GP knows nothing about me. I’m only down here for two years and I found it nearly impossible to get a GP when we came down here.”

Joyce was born in Bethany Home in Dublin in 1951. She was incorrectly told her mother, Emily Sheppey, died of tuberculosis the same year.

WhatsApp Image 2022-01-07 at 14.20.24 Joyce McSharry as a baby, pictured with her mother Emily Sheppey Joyce McSharry Joyce McSharry

In 2013 Joyce finally got access to her records in 2013 through Pact, formally known as the Protestant Adoption Society. It was only then she found out that her mother, who was from England, died in 1976.

My mother was alive. I was told she was dead from the word go. She wasn’t, she died when I was 27 or 28. She was 47 when she died and I found her a pauper’s grave over in England.

“I heard that she never recovered from what happened. I was taken from her when I was seven months, that’s what I was told.

“Her brother, who is now dead as well, found 10 photographs belonging to her, of the two of us, under her pillow. She kept them all the time, I have them now. It’s sad, I’d say it did knock the stuffing out of her.”

Emily was buried in a pauper’s grave in England and Joyce erected a headstone for her mother in recent years.

“She got an awful raw deal too, I’m trying to look for justice for her as well. She was thrown into a pauper’s grave in England, in Weston-super-Mare. I’ve since put that right, I put up a stone there for her. Her name and the name she gave me, Jacqueline, are on it.”

Joyce’s husband Kevin McSharry became her full-time carer in 2008, giving up work when he was 57.

The couple sold their house in Dublin in 2019 and moved to Laois in a bid to help their financial situation but they still struggle with medical costs and other bills.

Joyce said she spends around €1,500 every year on medication for issues such as epilepsy, atrial fibrillation (irregular heartbeat), asthma and chronic pain.

Joyce and Kevin have written to the Department numerous times in recent months.

In the most recent letter, sent to Minister O’Gorman on 4 January, they reiterated their call for survivors with certain medical needs to be granted access to enhanced medical cards prior to the establishment of a redress scheme.

The scheme is due to open to open applications for compensation, enhanced medical cards and other support late this year. However, given some survivors’ age and health needs, campaigners want the medical card aspect of the process to be fast tracked.

‘I’ll believe it when I see it’

In their letter to O’Gorman on Tuesday, Joyce and Kevin state: “The curse of the Bethany Home destroyed hundreds of lives. Two of those lives are that of the late Emily Sheppey and currently her daughter Joyce McSharry, struggling for decades with serious illnesses. With no access to her medical records Joyce continues to be denied her rights to this important information. Why?

“The HSE withdrew Joyce’s medical card in November 2019 after we reluctantly sold our home in Dublin to help alleviate our difficult financial situation.

“Joyce is spending €1,500 every year on drugs covering a range of serious medical problems including epilepsy, atrial fibrillation, asthma, chronic back and neck pain, spinal stenosis (which effects spinal nerves) and oral lichen planus (a chronic condition that can cause lesions and pain in the mouth).

“Surely Minister you could, as a gesture of goodwill, arrange to grant the enhanced medical card to Joyce without further delay. This large item of expenditure is also putting pressure on our modest domestic budget.”

WhatsApp Image 2022-01-07 at 14.20.24 (1) Joyce pictured today Joyce McSharry Joyce McSharry

The letter notes that it is “amazing how some pieces of legislation can be expedited when needed”, given the delays with the Commission of Investigation into Mother and Baby Homes and related legislation.

“Time is now of the essence for many survivors, some in their seventies and eighties suffering the effects of mental and physical bad health originating in the so-called mother and baby homes,” it adds.

The Department does not have any plans to give Joyce or other survivors with certain medical needs enhanced medical cards prior to the establishment of the wider redress scheme.

A spokesperson said the provision of an enhanced medical card to survivors “requires the establishment of legislative and administrative structures to provide statutory access to the relevant health services, assess eligibility and carefully manage and share relevant personal data with the HSE to support the issuing of cards”.

“Given the scale and significance of the approved proposals for the Mother and Baby Institutions Payment Scheme, an integrated piece of legislation is being prepared which will encompass both elements of the Scheme – the financial payment and the enhanced medical card.

“This approach will support the provision of a single, clear entry point to the Scheme for those survivors who will be eligible for both a payment and an enhanced medical card. It will make it more user-friendly as survivors will only have to make one application in order to be considered for both aspects of the Scheme,” a statement noted.

Joyce said she finds it hard to believe that much progress will be made in 2022, despite the promises.

“I’ll believe it when I see it. I believe nothing out of their mouths at this stage,” she said.

Redress scheme

The Government’s long-awaited redress scheme was unveiled in November.

It is expected to cost in the region of €800 million and some 34,000 survivors of institutions will be eligible to apply to the ex-gratia payment scheme.

Ex-gratia payments do not require the admittance of liability. Survivors who receive a payment will need to sign a legal waiver saying they won’t pursue legal action against the State.

The Government has to date ruled out widening the scheme to including people such as those who spent less than six months in an institution as a child and those who were fostered, despite repeated calls to do so.

Calls for the redress scheme to be changed grew louder last month after the State admitted that Philomena Lee, Mary Harney and other survivors are indeed identifiable in the Commission’s final report and should have been given a right to reply so they could correct any misinformation or misinterpretation of their evidence.

Meanwhile, the Certain Institutional Burials (Authorised Interventions) Bill is set to be published in February.

If it passes through the Oireachtas as expected, sites such as the former Bon Secours mother and baby institution in Galway may finally be excavated – five years after a “significant” quantity of human remains were found in Tuam in a test excavation.

In a letter sent to survivors in mid-December, O’Gorman said he will seek to bring both the Burials Bill and the Birth Information and Tracing Bill “through the Houses of the Oireachtas as quickly as possible to support timely enactment and implementation in 2022″.

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