The Information Commissioner’s Office (ICO) is calling on people with experience of the care system to share the challenges they’ve encountered when trying to access their care records from organisations.

With the launch of its new survey, the regulator aims to improve the assistance it provides to both the people who grew up in the care system in the UK and the organisations holding their information.

Under data protection law, everyone has rights over their own personal information. This includes the right to ask for this information using a subject access request (SAR) but for people with care experience, this can be a lengthy and stressful process.

Last year, the ICO ran workshops which identified that accessing care records is a significant issue with long delays, heavily redacted records, and challenges accessing support.

The insights revealed that organisations can struggle to understand what information they can release from complex records and often fail to treat these requests with the sensitivity they require.

Also highlighted was that the ICO itself could do more to help people with care experience obtain their personal information and exercise other information rights, as well as assist organisations to provide timely responses.

Amid these raised concerns, the ICO is now urging people to come forward to share their experiences both requesting their records and having their personal information handled in the care system.

The regulator said that the information gathered about the impact of delays, redactions, and other concerns will help it to identify areas where it can focus its support.

Catherine Evans O’Brien, the head of communities at the ICO, commented: “Accessing care records can be an emotive and personal subject, as the information can play a huge role in helping someone to understand their identity.

“As the UK data protection regulator, we want to empower people to exercise their rights over their own personal information and we want to improve the support and resources we provide to help people understand these rights.

“This survey is a major step towards improving the experience of accessing personal information for people who have been in the care system.

“As well as experiences trying to access records, we want to hear about any concerns people have about how their personal information has been used, so we can understand where we can make the most difference with our support.”

Speaking on her experience of accessing her records, campaigner Jackie McCartney said: “Someone I do not know, someone who I do not have a relationship with, gets to decide what I can or cannot see.

“A total stranger knows more about me than I do, or ever will. This is my history and the whole process should be dealt with compassion and care.”

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At the ICO’s Scottish office, the regulator has been engaging with local authorities after receiving complaints about several local authorities regarding poor performance handling SARs.

In Scotland, many local authorities have seen an increase in SARs, especially since the Redress Scheme. The scheme, which can help people receive a formal apology and payment from the Scottish government if they’ve suffered abuse while in care, requires people to submit supporting documents when applying for redress.

Jenny Brotchie, regional manager for Scotland at the ICO, remarked: “We have heard how undue delays and other challenges accessing care records can cause further trauma for people in Scotland.

“Organisations must get this right which is why we are closely monitoring local authorities until we are satisfied that their compliance has significantly improved.”