Psychiatric in-Patients Away From Home: Accounts by People With Intellectual Disabilities in Specialist Hospitals Outside Their Home Localities

Abstract

Background This study reflects a growing concern with the placement of people with intellectual disabilities and complex mental health problems in out of area placements at a distance from their families and communities. Materials and methods We interviewed service users (n = 17) living in out of area in-patient psychiatric units using a semi-structured interview as part of a service user consultation process. The questions addressed safety and security, food, facilities, day time activities, education, opportunities for socialization, clinical, cultural and religious needs, carer involvement and access to information. Service users were also asked where they would prefer to live if they were to leave the hospital. Results Although there were some positive stories, service user responses suggested limited opportunities for engagement in therapeutic or educational experiences, for building supportive relationships with staff or other residents, for developing religious and cultural identities or for enhancing family relationships. Conclusions Whilst many of the issues raised by participants will be familiar to critics of institutional care, being placed at a distance from home is likely to put an additional strain on relationships with family members and limit opportunities to engage in practices valued by specific ethnic minorities. Commissioners and managers of community intellectual disability services should bear in mind the perspective of service users with complex mental health needs, and take seriously the drawbacks in placing individuals out of area.

Trauma and Life Events in Adults with Intellectual Disability

“…For example, movement to out of area placements as a result of challenging behaviour may add to an individual's stress and also reduce opportunities for information sharing (e.g. of past traumas and current triggers) by disrupting support systems with families, friends and services [37].…”

“…Where behaviour is framed as problematic or challenging, an individual may be viewed only as a perpetrator rather than having been a victim in the past, and so, management may be more punitive than therapeutic for example with seclusion, restraints [38,39], being moved to out of area placements [37] and medication. Anti-psychotics are used extensively with people with intellectual disabilities [40], often controversially to manage behaviour where no underlying diagnosis such as PTSD has been identified and with limited evidence base for their clinical or cost-effectiveness [41,42].…”

“…Gathering and recording information on past life events (e.g. by using the BLESID life events schedule) [15] may be a useful routine practice for services especially if individuals are moved between placements frequently [37]. An example of a training course is 'Who's Challenging Who' which aimed to change staff attitudes and increase empathy for challenging behaviour [70].…”

Complex Behaviour Service: enhanced model for challenging behaviour

“…These placements, however, tend to be costly and vary in quality or, in some cases, perpetrate abusive practices (Department of Health (DoH), 2012) and decrease likelihood of community integration (SCIE, 2004;Barron et al, 2011;Chinn et al, 2011). UK data demonstrate that challenging behaviours are a major predictor of costs (Knapp et al, 2005) with one study reporting that relocation of ten service users with challenging behaviour into community living not only improved quality of life but saved around £900,000 per year (Association of Supported Living, 2011).…”

Home visits: a reflection on family contact in a specialist forensic intellectual disability service

“…. Elderly or disabled family members were particularly affected (Bonell et al, 2011;Chinn et al, 2011). reported that family contact declined the further the distance from their relative's placement, but surprisingly, the relatives of residents in campus settings reported a higher total number of contacts with their family members, than those in community housing.…”