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. SummaryAn 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.

Physical health issues in adults with severe or profound intellectual and motor disabilities: a systematic review of cross‐sectional studies

“…In seven studies, both adults and children (age 0–82 years) were included (Van der Heide et al ; Petry et al ; Fellinger et al ; Van den Broek et al ; Poppes et al ; Van den Akker et al ; McGuire et al ). Eight studies included a study population that was representative for SPIMD (Gittins & Rose ; Nagae et al ; Ohwada et al ; Ohwada & Nakayama ; Van den Broek et al ; Poppes et al ; Van der Heide et al ; Petry et al ). All of the studies included both male and female.…”

“…In most of the studies, the target population was residing in an institution wherein every person with SPIMD was sampled. There was an elevated risk of bias if not all of those with SPIMD were included (Van den Akker et al ), if participation was open (Lin et al ), if the selection was a component of the research (Hove ; Gittins & Rose ) or if no information was provided (McGuire et al ; Petry et al ). Likelihood of non‐response …”

Prevalence of Dysphagia in People With Intellectual Disability: A Systematic Review

“…reported to have dysphagia in a further study (Gittins & Rose, 2008). Although one study reports a lower rate of 20% for dysphagia in non-ambulatory people with profound ID, the definition of dysphagia is unclear, with it also being noted that 23 (44%) were at risk for aspiration pneumonia due to significant oral motor dysfunction (Kozma & Mason, 2003).…”

People with intellectual disabilities and dysphagia

“…At the time an audit of adults with profound intellectual disabilities was undertaken in one area of England, there was no funding for a dysphagia service for adults with intellectual disabilities, and this was acknowledged as a service deficiency [63]. Audit results provided evidence for the need for such a service, which was subsequently provided.…”