Copying letters to service users with learning disabilities: opinions of service users, carers and professionals working within learning disability services

Abstract

Accessible summaryThe government has said that when a health professional writes a letter to other people about their treatment the person being treated (a patient or service user) should have a copy of this letter. We wanted to find out from service users, carers and staff in learning disability services what they thought about it.This has now been done and the results showed that we need to look at: Making sure service users know they have a right to receive copies of letters written about them. Working with service users and carers to make sure there are ways to help every service user choose what information they want, and how they want it. Helping service users keep their information safe and secure so that it remains private. Supporting service users who want to share information about their health with the people who support them and care for them. More resources are needed to increase the ways we can communicate with people for example using tapes, symbols. We need the skills and time to be able to do this. SummaryThe NHS Plan, Department of Health (2000) made a commitment that patients should be able to receive copies of clinicians’ letters about them as a right in order to improve communication and enable patients to participate in their care. In South Gloucestershire, the opinions of local service users with learning disabilities, their carers, and professionals working within learning disability services about this issue were sought using questionnaires and focus groups in order to identify and then develop good practice. A number of practice issues were identified: protocols for developing individualised accessible information are needed, involvement of service users in the management of their information and maintenance of its confidentiality, and involvement of carers in the sharing of information, if this is appropriate. A communication strategy needs to be developed by services working with people with learning disabilities, in conjunction with service users and carers. The resource and training implications of this area of service development need to be considered.