The Information Commissioner’s Office (ICO) is calling on people with experience of the care system in the UK to share the challenges they have faced when accessing their care records from organisations.

With a survey launched today, the UK data protection regulator is committing to improving the support it provides to both people with care experience and the organisations that hold their information.

The ICO recognises that records of personal information are especially important to people who have care experience, often revealing elements of their childhood history which they cannot recall. 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 with organisations who support people with experience in the care system. The workshops identified that accessing care records is a significant issue with long delays, heavily redacted records and challenges accessing support. The insight 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.

It also highlighted that the regulator could do more to help people with care experience obtain their personal information and exercise other information rights, as well as support organisations to provide timely responses. In response to the concerns raised, the ICO is now urging people with care experience in the UK to come forward to share their experiences, both requesting their records and having their personal information handled in the care system.

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

Catherine Evans O’Brien, Head of Communities at the ICO, said: “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.”

“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.”

The ICO has also been engaging directly with local authorities in Scotland to improve response times where it has identified poor performance handling requests for care records. In Scotland, many local authorities have seen an increase in SARs, especially since the Redress Scheme requires people to provide
care records when applying for redress for abuse suffered while in care.

Jenny Brotchie, Regional Manager for Scotland at the ICO, said:

“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.”

Using the insight gathered from both workshops and the survey, the ICO will produce updated resources for all UK organisations, providing clarity on how they can improve their processes when handling requests for care records and protect the personal information of people with care experience.

If you have experience accessing your care records, please share details with the ICO please share details with the ICO here.

You can read more about the ICO’s work with local authorities in Scotland here.

Find out more about your information rights on the ICO’s website.