An audit of adults with profound and multiple learning disabilities within a West Midlands Community Health Trust – implications for service development

Abstract

Accessible summary • We wanted to find out more information about adults with profound and multiple learning disabilities who lived in our area. • We carried out a survey (audit) using information from the local Community Teams. • We found 61 people. Many of these people had two or more disabilities e.g. physical disability, hearing problems, epilepsy, problems with eating and drinking. • We have set up a multidisciplinary team to work with this group of people. • We have made a register to keep information up to date. • We want to highlight the very special needs of this group of people and make sure they are given a good service. Summary An audit was carried out to gain an overview of the profound and multiple learning disabilities (PMLD) population in a local health trust to inform current and future service provision. An overview of the issues faced in developing clear defining criteria is presented. Published definitions of PMLD were used to identify clients from data held on the Special Needs Register (SNR – a data base of people with learning disabilities known to health and social services departments). Information obtained was cross checked with community teams and other professional service records to identify any further individuals who may meet criteria for PMLD. Existing information from individual case notes was then audited to confirm the clients identified meet the criteria for PMLD. The audit identified 61 adults with PMLD; all have complex needs and multiple health care requirements. Eighty-three per cent had two or more disabilities in addition to profound intellectual impairment. Twenty-nine per cent were reported as having problems with dysphagia. People with PMLD should be given priority for health action plans, particularly vision and hearing screening. The audit also needs to be extended to include younger people in transition to adult services. A register of clients with PMLD needs to be established and maintained as part of the SNR register.