For many years it was thought that people with RTT had extremely limited understanding and lacked the ability to communicate feelings, wishes and opinions. Thanks to eye gaze technology that is all changing but it needs time, patience and dedicated support to realise this. Parents/carers essentially need to learn a whole new language otherwise the person they care for will remain ‘locked in’ which is doing them an injustice and is detrimental to their health and well-being.

We will recruit and train Regional Communication Champions to support parents/carers in using augmentative and alternative forms of communication (AAC), with communication-focused ‘coffee mornings’ allowing them to problem solve, ask questions and get help with developing personalised resources for the person they support. They will also facilitate local group outings providing supported opportunities for parents, carers and the person with RTT to practice their communication skills.