Impact may include difficulties with movement, cognition, hearing and vision, communication, emotion, and behaviour.Using the list of patients we then contacted the parents via telephone or in person to gather the information. We developed a proforma for our parent discussions to provide a standardised approach as well as a parent information sheet to enable consent. Proforma included asking about . GI issues experienced . Treatments felt to be most effective . Effect of GI issues on patient . Effect of GI issues on family