Learning Disability Week: tell people how their information is used

June 20th 2024

It’s Learning Disability Week, and we’re sharing some tips on how to ensure people with learning disabilities know how their information is used and shared.

It is, after all, a legal requirement for organisations to tell people what personal information they keep about them, what they do with it and who they might share it with.

This is usually done by writing a Privacy Notice. This is a well-known legal requirement, and most care services probably have one.

However, often Privacy Notices are long and detailed and written in legal language. Most people do not read them, and if they do, they struggle to understand the technical language that they often use.

Some care organisations also produce a short summary of their Privacy Notice, written in language that is easier to understand. Some organisations also produce a summary using Easy Read. (Easy Read means having pictures alongside the words to help explain what is being said.)

Last year we launched a report – It’s my information – keep it safe. One of the organisations involved in this work was Journey Enterprises, a service for people with learning disabilities in the North East.

The people at Journey told us that more organisations should produce easy to understand Privacy Notices which should be shared with everyone and should be easy to find.

Since then, Journey has gone one step further, and recorded and shared an audio description of their privacy notice featuring several of the people who attend the services. It’s an excellent example of a creative and effective way to share important information. Congratulations to everyone involved!

Listen to Journey’s privacy notice here.

Find out more about It’s my information – Keep it safe.