People seeking their own care records ‘let down’ by system, warns Commissioner

People trying to access their own care records are being “let down” by local authorities and health and social care bodies, with damaging consequences for care-experienced people seeking answers about their lives, the Information Commissioner’s Office (ICO) has warned.

In research published in December, the ICO found that people requesting their care records are facing systemic and demoralising barriers, including long delays, poor communication, missing information and extensive redactions. The findings have prompted a call for urgent reform across UK local authorities and Health and Social Care Trusts in Northern Ireland.

The regulator’s survey revealed that more than two-thirds (71%) of respondents struggled with poor communication from their local authority, while 69% said the process took longer than expected. One person reported still waiting for their records 16 years after making a request.

When records were finally received, the problems did not end. Nearly six in 10 people (59%) said they did not receive enough information, and almost nine in 10 (89%) were left with unanswered questions or concerns. For many, the experience was described as retraumatising rather than restorative.

John Edwards, the Information Commissioner, said access to care records is about far more than data rights. “This is so much more than a request for personal information. These are people fighting to access their own biography – their own identity – that is in the custody of an organisation,” he said.

“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.”

Edwards said the current situation was “unacceptable” and called for leadership action at the highest levels of local government. “Real change must come from the top – so today I am calling on local authority leaders across the UK to take urgent action,” he said.

He argued that improvement must begin at the point a child enters the care system. “When a child enters the care system, their information should be recorded with their rights in mind, knowing that they may request it later. This will reduce the administrative burden and keep the person at the very heart of the process, so future generations do not face the same struggle.”

The ICO’s findings are based on a 2024 survey of 208 people, including 172 adults who were care experienced or acting on behalf of someone close to them. The regulator also held focus groups with organisations, including local authorities, which highlighted the operational pressures behind the poor experiences reported by care leavers.

Frontline staff told the ICO they understood the importance of handling care records sensitively, but often lacked the resources, guidance and support to do so well.

For care-experienced people, however, the consequences of weak record-keeping and unresponsive systems can be profound.

Jackie McCartney, a care-experienced campaigner and ambassador for the Rees Foundation, described the moment she first received her records. “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 said.

“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.”

McCartney said her records were incomplete, disorganised and heavily redacted. “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,” she said.

“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.”

Writer and care-experienced advocate John-george Nicholson echoed those concerns, describing care records as a form of state-held storytelling. “We understand who we are through stories. The ones we tell ourselves and the ones others think and write about us,” he said.

“Growing up in care, the state became my storyteller, taking on the role most people’s families play. My files hold many of those stories, yet for years they seemed to forget who I was.”

Nicholson said the scale of information he received changed dramatically over time. “I first accessed my records at 22 – 126 pages. Almost 25 years later, I asked again and received more than 800,” he said.

“They are tough and often traumatic to read (when I first received them in the post, they came without warning), but they are also a kind of treasure chest: fragments of memory, windows into a past I’d tried to forget.”

He added: “At first, they broke me. But over time, they became maps… helping me understand, make sense of the damage, navigate the past and future, and see that it wasn’t my fault. I was just a kid in a broken system.”

“But the system is still broken, and record-keeping is a critical element of this – our storytelling. Too often the whole child is lost in forms and reports, their voice minimised or unheard. That has to change.”

To address the problems identified, the ICO has launched its Better Records Together campaign, alongside a suite of new standards and practical resources.

The campaign includes new guidance for organisations on how to handle care record requests with empathy and clarity, advice for people requesting their records, and a UK-wide supervision pilot across 2025–26 involving 19 organisations to monitor performance and drive improvement.

Edwards has written directly to senior leaders, urging them to prioritise the new standards, invest in sufficient staffing and systems, and improve record-keeping practices from the outset of a child’s time in care.

The letter warns that failure to improve could lead to regulatory action. The ICO recently issued an enforcement notice to Bristol City Council over delays involving child social care data and fined Scottish charity Birthlink £18,000 after it destroyed thousands of records, including handwritten letters and photographs.

Sector organisations have broadly welcomed the initiative.

Dr Jim Goddard, chair of The Care Leavers Association, said: “Accessing the files from my childhood in care was one of the most important experiences of my life. It is impossible to exaggerate the importance of these files to those of us who grew up in care as children.”

“Anything that makes this process easier and clearer for us, such as this new ICO guidance, is to be welcomed.”

Augusta Itua, legal consultant at CoramBAAF, said the campaign was “an important step towards improving the experiences and outcomes for care experienced people seeking access to the information about their life and family history held within children’s social care files”.

She added: “We hope that the process will become more person-centred and trauma-informed and better prioritise the rights and needs of care experienced people.”

For social workers, the campaign raises difficult questions about everyday recording practices and long-term responsibilities to children in care.

As Edwards warned: “Improving this process starts at the beginning – when a child enters the care system, their information should be recorded with their rights in mind.”

The Better Records Together campaign challenges the profession and its leaders to see care records not simply as administrative tools, but as living documents that shape identity, memory and healing long after a child has left the care system.