“A total stranger knows more about me than I do.” This is often the reality for people across the UK who have experience in the care system.

Access to personal information is a fundamental right, but it can also be so much more. Over the last two years, I have heard many powerful stories from people who have attempted to request their own care records.

For tens of thousands of people who have care experience, these records are their own biography. They can hold forgotten memories, valuable parts of their identity or sometimes difficult answers behind traumatic life events.

But too often, people trying to access their own information are not getting what they want or need from their records. And they don’t understand why.

Our work with people who have care experience has revealed systemic challenges across the UK, which risk causing harm to people trying to access their records.

Far too many people have shared a similar demoralising story – their requests for their records have been met with cold bureaucracy, no compassion and long delays. One person told us it took them sixteen years to get their records.

These challenges run deeper than subject access requests alone, stretching back to when a care record is first created.

People told us that they did not understand what information was being collected and recorded about them during their time in care. It comes as no surprise that nine out of 10 people were left with questions or concerns after receiving these records.

This current picture is unacceptable – it must change today.

By improving how you handle requests, your organisation can avoid causing more distress and frustration for people who only want to be united with their own story.

By creating care records that are designed to be accessed, your organisation can build a more efficient and resilient process for children and young people currently in care.

This will provide a more positive experience for those trying to access their care records. You should take every opportunity to ensure your IT infrastructure is designed with people at its core to improve access rights for the future. This will not only benefit those entering the care system today but will also save you time and resources over the long term when people come to request their records.

Better support 

It is not only people accessing their records who are struggling with the current process. We have also heard from frontline staff at local authorities, health and social care trusts and other organisations who are trying their best to get this right.

But they are struggling with a lack of resources and clear guidance on how to navigate these requests within the statutory timeframe.

It does not have to feel impossible or overwhelming. There are many people who play a role here, and as the regulator, we can bring clarity to how these roles work together to thread people’s stories.

Organisations need to be equipped with the skills and knowledge to handle these requests with the care and empathy they rightly deserve.

Return people’s calls, answer their questions, explain any roadblocks. Provide clarity on the process and offer your support to navigate it.

An empathetic, person-centred approach can make a huge difference between an empowering experience and a demoralising one.

These standards provide clarity on the measures we expect organisations to have in place to provide a better experience for all. They will help you understand your obligations and navigate the process.

Implementing these measures will lead to the changes that both people with care experience and the organisations handling their records desperately need.

Better records, together   

There are an estimated 107,000 children in care across the UK ¹. For every child entering care, you must build their care record with their rights in mind and keep it safe until they wish to access it.  

Our standards cover the lifecycle of a care record. A generation from now, I want these children to have a more rewarding and positive experience than many who have gone before them. They will understand their rights over their own information and receive the support they need.  

More immediately, I want every member of staff handling care records to have access to this resource. This will give them certainty and support to both respond to requests and create care records with empathy. 

Technology can also help here. I encourage you to explore the potential for AI and other technologies to responsibly support requests for records and help gather answers to questions. 

I hope these standards will lead to positive and timely improvements. But if our standards are not being followed, we will not hesitate to take action.

Together, we must build a clear pathway to better care records and improved right of access. One that keeps the person at the heart of the process at every step.

John Edwards, Information Commissioner  

 ¹  NSPCC. NSPCC Children in care (looked after children): statistics briefing.