BackgroundPeople with intellectual disability have a higher prevalence of physical health problems but often experience disparities in accessing health care. In England, a number of legislative changes, policies and recommendations have been introduced to improve health care access for this population. The aim of this qualitative study was to examine the extent to which patients with intellectual disability and their carers experience discrimination or other barriers in accessing health services, and whether health care experiences have improved over the last decade years.Method and Main FindingsTwenty nine participants (14 patient and carer dyads, and one carer) took part in semi-structured interviews. The interviews were audio-taped and transcribed and analysed using thematic analysis. Eight themes were identified. Half the participants thought that the patient had been treated unfairly or had been discriminated against by health services. There were accounts of negative staff attitudes and behaviour, and failure of services to make reasonable adjustments. Other barriers included problems with communication, and accessing services because of lack of knowledge of local services and service eligibility issues; lack of support and involvement of carers; and language problems in participants from minority ethnic groups. Most participants were able to report at least one example of good practice in health care provision. Suggestions for improving services are presented.ConclusionDespite some improvements to services as a result of health policies and recommendations, more progress is required to ensure that health services make reasonable adjustments to reduce both direct and indirect discrimination of people with intellectual disability.
The evidence supporting the effectiveness of PCP is limited and does not demonstrate that PCP can achieve radical transformations in the lives of people with ID. Clearer descriptions of PCP and its components are needed. Small-scale successful demonstrations of effectiveness exist, but its clinical, cost-effectiveness and wider implementation must be investigated in large scale studies.
BackgroundApproximately 18% of adults with intellectual disabilities living in the community display behaviours that challenge. Intensive support teams (ISTs) have been recommended to provide high-quality responsive care aimed at avoiding unnecessary admissions and reducing lengthy in-patient stays.
AimsTo identify and describe the geographical distribution and characteristics of ISTs, and to develop a typology of IST service models in England.
MethodWe undertook a national cross-sectional survey of 73 ISTs. A hierarchical cluster analysis was performed based on six prespecified grouping factors (mode of referrals, size of case-load, use of outcome measures, staff composition, hours of operation and setting of service). A simplified form of thematic analysis was used to explore free-text responses.
ResultsCluster analysis identified two models of IST provision: (a) independent and (b) enhanced provision based around a community intellectual disability service. ISTs aspire to adopt person-centred care, mostly use the framework of positive behaviour support for behaviour that challenges, and report concerns about organisational and wider context issues.
ConclusionsThis is the first study to examine the delivery of intensive support to people with intellectual disability and behaviour that challenges. A two-cluster model of ISTs was found to have statistical validity and clinical utility. The clinical heterogeneity indicates that further evaluation of these service models is needed to establish their clinical and cost-effectiveness.
Declaration of interestNone.
This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in ; Vol. 22, No. 15. See the NIHR Journals Library website for further project information.
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