"Tell me what they do to my body": A survey to find out what information people with learning disabilities want with their medications

Abstract

Background: Previous research has found that people with learning disabilities are not given prescription information that is tailored to their needs. We wanted to find out people’s information requirements.
Materials and Methods: A questionnaire was co-produced by the authors and consultants with learning disabilities. It asked them what information people received from their GP and pharmacist about medications. The questionnaire was circulated at a self-advocacy conference in the North of England. Fifty eight self-advocates completed the questionnaire.
Results: Information from GPs and pharmacists was mainly instructional, referring to when and how to take the medicine and dosage. Most respondents struggled to read the leaflets and remember verbal information. Many wanted the information in easy-read format, and some wanted pictures or diagrams as well. A key theme was that health professionals often talked only to carers or support workers rather than involving the patient directly, and some disclosed that they were not informed about side effects or alternative medications.
Conclusions: Health professionals should take time to discuss health issues and medication with the individual rather than only with carers. This could be facilitated by providing information in an accessible format.