MethodPatients known to learning disability services in two health boards in southeast Scotland were cross-matched with the patients tested at the Western General Hospital in Edinburgh. Those with a positive genetic diagnosis were identified. Semi-structured interviews were conducted with senior learning disability psychiatrists and clinical genetics consultants.ResultsOf the 3323 patients with intellectual disability across both health boards, 41% have had genetic tests and 6% have an identified genetic abnormality as the cause for their intellectual disability. Of the 1349 patients who have been tested, a genetic abnormality was found in 14%. Psychiatrists named several benefits to genetic testing, but they also highlighted a number of non-medical reasons for not testing adults with intellectual disability.Clinical implicationsIdentifying genetic aetiology in intellectual disability has a number of benefits. Our study would indicate that genetic diagnoses are being missed due to a lack of genetic testing in this patient group. Adult learning disability services need to consider increasing genetic testing.
Purpose
– Nationally community services for patients with intellectual disability and forensic needs are limited, and research to guide service development for this patient group with highly complex needs is sparse. The purpose of this paper is to provide an overview of referrals to and case management by the multi-agency Fife Forensic Learning Disability Service (FFLDS), including demographic data, treatment, risk assessments and outcomes.
Design/methodology/approach
– All referrals received between 2004 and 2014 were reviewed to identify key demographic factors and to clarify the outcome of the referrals. Risks levels and presence of factors related to ongoing risk management were identified. For those accepted, final outcomes were noted.
Findings
– In total, 145 referrals were received by FFLDS between 1 January 2004 and 31 December 2014. Of these 117 were accepted for ongoing case management. In total 106 patients were discharged from FFLDS over the review period, with the vast majority remaining in community settings. Patients were overwhelmingly male, with an age range of 16-79 (mean age of 30). Approximately half of referrals were from criminal justice agencies, and sexual and violent offences predominated. Alcohol and/or illicit substance use was problematic in 49 per cent of patients.
Research limitations/implications
– FFLDS needs to consider building links with Drug and Alcohol Services, for assistance in developing expertise in managing problematic alcohol and/or illicit substance use. Links with professionals working with female offenders may increase the rate of referral of female patients.
Originality/value
– Policy and legal frameworks emphasise the need to manage people with learning disabilities and forensic needs in the least restrictive environment possible. This paper provides information on a cohort of forensic patients over a ten-year period, including characteristics and outcomes, to inform the evaluation of these frameworks and the planning of both community and in-patient services for this patient group.
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