According to the Information Commissioner’s Office (ICO), individuals are also experiencing slow responses, missing information and heavy redaction.
The ICO has warned people trying to access their own care records are being let down and is now calling for improvements across UK councils and health and social care trusts in Northern Ireland.
The warning follows new ICO research which shows people with care experience face demoralising barriers when attempting to retrieve information about their own lives.
A survey of 208 respondents, conducted between February and April 2024, revealed 71% struggled with poor communication from the body handling their request. Another 69% said the process took longer than expected, with some still waiting up to 16 years.
Even when records were delivered, many were disappointed. Over half (59%) said the information was insufficient and almost nine in ten (87%) were left with unanswered questions.
In response to the findings, the ICO has launched its Better Records Together campaign, providing new resources for both care-experienced people and the organisations responsible for managing files. The campaign forms part of a wider evidence base gathered throughout 2024, which will inform the regulator’s next steps.
The ICO stressed that while reading care files can be difficult, individuals ‘overwhelmingly agreed that they have the right to access information recorded about them.’
John Edwards, Information Commissioner said: ‘This is so much more than a request for personal information. These are people fighting to access their own biography – and their own identity – that is in the custody of an organisation. It is a brave and emotional step.
‘But these requests are too often met with cold bureaucracy, long delays and pages of unexplained redactions, which can have devastating consequences.’
‘This current picture is unacceptable – but there are many people who play a role in creating better records and better access,’ Edwards continued. ‘As the data protection regulator, we can bring clarity to how these roles work together to thread people’s stories.
‘Real change must come from the top – so today I am calling on local authority leaders across the UK to take urgent action.’
Jackie McCartney, care experienced campaigner and ambassador for the Rees Foundation, added: ‘I can remember the social worker arriving with my care records – she carried one old battered brown box. That was all I was worth. That box was my life story of residential care, with sixteen years of my life inside.
‘She told me not to worry – ‘there’s not a lot in there’ – but I wanted to talk to her. Because this total stranger knew more about my life than I did. She had read my story before I had, and decided what I could or could not see. These were my puzzle pieces of how and why I had become a child in care.’
‘I opened my box and looked inside. I can still feel the pain and disappointment. My records were not even in date order, with whole years of my life missing and no medical records. There were so many blank pages with nothing on, and so much information redacted,’ McCartney explained.
‘The whole process must have more compassion and care. I want organisations to see this is more than data, files and words on a page – this is real people’s lives and stories.’
You can read the full report here.
Image: Ryan Snaadt/UnSplash
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