The Information Commissioner’s Office (ICO) has called for urgent improvements across UK local authorities and Health and Social Care Trusts in Northern Ireland after warning that people trying to access their own care records are being let down.
Research from the ICO found that people are facing systemic and demoralising challenges when it comes to their care records.
Over two thirds (71%) of people struggled with poor communication from the local authority and 69% said the process took longer than expected – with people still waiting up to sixteen years later.
When care records were received, over half (59%) did not receive enough information and nearly nine in 10 (87%) were left with questions or concerns.
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. As the data protection regulator, we can bring clarity to how these roles work together to thread people’s stories. We can build a clear pathway by ensuring everyone has the tools they need – equipping organisations with the certainty and skills to handle requests with care and compassion, and empowering people with the confidence and support to advocate for their own rights.
“Real change must come from the top – so today I am calling on local authority leaders across the UK to take urgent action. We know frontline staff want to get this right but are struggling with lack of resource and guidance. Improving this process starts at the beginning – 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.”
Jackie McCartney, care experienced campaigner and Ambassador for the Rees Foundation, said: “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.
“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.”
John-george Nicholson said: “We understand who we are through stories. The ones we tell ourselves and the ones others think and write about us. 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.
“I first accessed my records at 22 – 126 pages. Almost 25 years later, I asked again and received more than 800. 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. At first, they broke me. But over time, they became maps, continually changing as I age – 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. Every child in care deserves records that see them, protect them, and help them heal and thrive.”
Better Records Together
Today, the ICO has launched its ‘Better Records Together’ campaign by publishing a suite of practical resources to help tackle the current issues. The campaign includes:
new standards for organisations providing clarity on how to handle requests with care, as well as good practice measures to better support people from the moment they enter the care system;
clear advice for people requesting their records to help them to navigate the process and access support;
UK-wide supervision pilot running across 2025/26, monitoring the performance of 19 organisations to drive improvements.
In a letter sent to senior leaders today, the Information Commissioner has made clear that if improvements are not made, organisations may face regulatory action.
The ICO has recently served Bristol City Council with an enforcement notice for undue delays involving child social care data, and fined Scottish charity Birthlink £18,000 after it destroyed thousands of records, including handwritten letters and photographs.
The regulator is working with charities, advocacy groups and other third parties to ensure their support reaches those who need them most.
