Scots heart patient's anger after health records destroyed

However, a spokeswoman for the Scottish Government said medical records were "a matter for local health boards."

Dr Morton, who is a chartered counselling psychologist and health campaigner, said the loss of her medical files was an "abuse of power" and said it risked compromising her care because medics would not have access to key information about her incurable heart condition.

She said the history of her "experimental" surgery was also important for medical research purposes and this had now been lost and said it would likely have implications for other adults with childhood conditions.

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The 44-year-old made medical history in 1978 after a pacemaker was fitted when she was just 11 days old at Yorkhill Hospital in Glasgow.

She was born with complete heart block, a serious congenital heart defect and has had 11 fitted since then.

She decided to inquire about her medical records after completing training on GDPR compliance for her employer.

She contacted the legal team that handles medical record requests at the health board asking for her paediatric records from Yorkhill Hospital, which closed in June 2015 after children's services were transferred to the new Queen Elizabeth University Hospital.

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"It's something that has been on my mind before," she said. "The research that I do, draws a lot from personal experience and I felt there was gaps in my knowledge.

"I got a response fairly quickly that said, sorry we don't have them, they have been destroyed," she said.

"It looked like a standard letter.

"I was really upset. A significant part of my childhood was spent in hospital and it felt like an abuse of power.

"For all of us, our medical history is part of our story but particularly for those of us with childhood health conditions.

"It could potentially affect my medical care. They left a lot of leads in my body and if one of those was to become infected, how are they going to find out what it is?

"There is the medical risk and there is the psychological impact. 

She added: "A lot of the work that was done at that time is of medical research relevance. 

"This was pioneering work that was being done in Scotland so why are we destroying it?"

She was told that adult general hospital records are destroyed six years after the date of the last entry.

Dr Morton, who co-authored the book Healing Hearts and Minds and has campaigned for improvements in the care of adults with childhood heart conditions, was told the health board had records for the period when she transitioned to adult care at Stobhill Hospital but the paediatric files were destroyed.

"What happened in 2014, did they just burn everyone's records," she said.

"This isn't just about me. It potentially affects anyone who has a childhood health problem."

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Dr Lynsay Crawford, a GP in the Forth Valley area said she was "appalled" by the action.

She said: "It is news to me that this happens.

"Totally agree with her points about the medical necessity to keep notes of operations and anatomical information about the placement of leads etc.

"Equally, an excellent point about research. 

"In genera practice all records, including old handwritten notes, were all scanned electronically.

"On a personal level I find this morally reprehensible to erase part of someone's life narrative."

Dr Morton's post on social media sparked interest from others who said they had struggled to access medical records.

One man replied: "That explains why there was no record of a cardiovascular operation I had in 1989."

Professor Ian Welsh OBE, former chief executive of the Health and Social Care Alliance Scotland, which advocates for people with long-term conditions, said: "‘We live in a time when data and personal information is sacrosanct.

"How much more disappointing is it that people who live with life-long conditions can’t rely on their own stories and deeply personal medical information being freely available, not least to themselves but successive clinical specialists.  

"Additionally, that period of transition between children’s and adult services remains deeply problematic for many families and tells a story of poor rather than improving integrative services."

Norma Roberts, a former theatre nurse who is now campaigning on behalf of Scots women who suffered health problems from mesh implants said: "A lot of our mesh-injured ladies are finding this out too. 

"These ladies want removal but have no idea which type of mesh was used on them in the first place. 

"It used to be they were moved to microfiche, back in the paper days. Now these have all been binned. Shocking."

A spokesman for NHSGGC said: “There are Scottish Government guidelines for health boards regarding the disposal and retention of medical records which NHSGCC has followed in regard to this individual.”