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

Fifty-eight people completed the questionnaire. Many of them said they did not get enough information about their medicine. Most people wanted easy-read leaflets and pictures.

Authors: Rebecca Fish, Chris Hatton, Umesh Chauhan

Source: British Journal of Learning Disabilities – 2017 – Wiley Online Library

Abstract

Accessible summary

We gave a questionnaire to self-advocates who were attending a conference. The questionnaire asked them how they felt about the information they get with their medicine. Fifty-eight people completed the questionnaire. Many of them said they did not get enough information about their medicine. Most people wanted easy-read leaflets and pictures. There are many different places to find easy-read information on the internet. We think they should be collected and checked. We also think that doctors and chemists need to spend more time with people to explain about medicines.

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 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 respondents 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.

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