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Factors associated with long-term use of restrictive interventions
- Authors:
- RICHARDSON Ben, WEBBER Lynne S., LAMBRICK Frank
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 45(2), 2020, pp.159-166.
- Publisher:
- Taylor and Francis
Background: Despite agreement that restrictive intervention (RI) should only be used as a last resort and for as long as required, little is known about long-term RI among individuals with a disability. This study examines long-term RI use. Method: From the Restrictive Intervention Data System dataset from Victoria, Australia, a cohort of 1,414 people reported to be restrained or secluded between July 2008 and June 2010 were identified. The primary outcome was restraint during the follow-up period (July 2013–June 2015). Measures of the secondary outcome, reasons for restraint cessation, were assessed via a self-report survey completed by 54 service providers. Results: At follow up, 74% of the cohort was still subject to RI. Antipsychotic medication use, a diagnosis of autism, and communication difficulties were associated with the use of restrictive interventions at follow up. Conclusions: Long-term RI is prevalent, but can be minimised by positive behaviour support. (Edited publisher abstract)
Advocacy with people with learning disabilities and autistic people, who are subject to seclusion, segregation or restraint
- Authors:
- VOICEABILITY, KATE MERCER TRAINING
- Publisher:
- Voiceability
- Publication year:
- 2020
- Pagination:
- 5
- Place of publication:
- Bath
Independent advocacy is crucial to make sure a person’s voice is heard and their human rights are protected. This is especially important when a person is subject to compulsory and restrictive powers. Consistent and effective advocacy must be provided to people who most require it, whenever they require it, including to people with learning disabilities, autism or both, who are subject to long term segregation. Improvement to the delivery and commissioning of advocacy is required to achieve this. This briefing highlights the key features of advocacy for people with learning disabilities, autism or both who are in long term segregation, which must be accessible, highly competent, holistic, independent and perceived to be so, connecting, supporting and joined up. The paper also sets out two commissioning options: national commissioning – the model could be specified clearly, activated promptly, its delivery easily monitored, and there would be a clear line of sight on the resources; and local commission – this would allow locally commissioned services to align with most existing statutory provision. Irrespective of the commissioning arrangements, the service must be able to undertake the full range of statutory advocacy duties, rather than referring the person on and requiring that they relate to several advocates. The paper conclude with eight recommendations, including ensuring that advocacy for people in long term segregation is provided on an opt-out basis, to ensure a greater number of people in long term segregation receive the timely advocacy support and representation they need for their voice to be heard and their rights upheld. (Edited publisher abstract)
Lived experience of restraint, seclusion and segregation (RSS): stories and recommendations for safer care
- Authors:
- ADVONET, CHANGE
- Publishers:
- Advonet, Change
- Publication year:
- 2020
- Pagination:
- 23
- Place of publication:
- Leeds
This report aims to put the authentic voices of people with lived experience of restraint, seclusion and segregation (RSS) in care settings at the heart of the conversation about safe and effective care. Participant spoke of being afraid, scared, angry, upset when experiencing RSS; they felt that staff in healthcare settings lacked empathy and were not person-centred; and that there was a lack of adequate staffing in care settings. They saw the impact that poor resourcing, lack of training, and unsupportive cultures had on the staff who were at the frontline of their care. Some participants had positive experiences of RSS. They were clear that this was when it was used as part of a person-centred de-escalation strategy, with compassion, and as a last resort where safety was a concern. However, participants also provided very many examples of bad practice in implementing restraint, seclusion and segregation. People spoke of many experiences where they were physically, psychologically and emotionally harmed. People with lived experience expect: robust, personalised and appropriate training for care staff; accountability and action, at all levels, including funding commitments from the government for better, community-led care models; a stronger role for advocacy, including peer and family advocacy, and a more co-operative and involving culture within care providers. Most of our participants voiced the view that restraint, seclusion and segregation should be stopped, and people should be cared for in their own communities with appropriate support. (Edited publisher abstract)
Restrictive interventions for people with a disability exhibiting challenging behaviours: analysis of a population database
- Authors:
- WEBBER Lynne S., McVILLY Keith R., CHAN Jeffrey
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 24(6), November 2011, pp.495-507.
- Publisher:
- Wiley
People with an intellectual disability whose behaviours are perceived to be of serious harm to themselves or others are at risk of being subjected to restrictive interventions. Prevalence rates are difficult to determine because restrictive interventions are defined differently across jurisdictions and because means of data collection vary. Most research is unable to draw on the results of population-level data. This study reports the use of chemical and mechanical restraint and seclusion in the State of Victoria, Australia, over a 12-month period. The data reported are those collected by government and community service organisations in keeping with their statutory obligations. At the beginning of the study 152 service providers were registered to use restrictive interventions. During the course of the year-long study just under 31,000 episodes of restrictive interventions were reported involving 2102 people; the majority were subjected to chemical restraint. The use of restraint was found to be routine rather than a strategy of last resort. Consistent with data from the UK and USA, those subjected to restrictive interventions were more likely to be young males with multiple disabilities, including autism. The authors conclude that systemic policy and procedural developments are needed to address current use of restrictive interventions, together with a longitudinal study to evaluate the effectiveness, of alternative, non-restrictive strategies.
The effects of non-contingent self restraint and self injury
- Authors:
- KDERTH Denise Marzullo, PORGAR Patrick R., MORALES Sabrina
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 22(2), March 2009, pp.187-193.
- Publisher:
- Wiley
Self-restraint is a pervasive phenomenon among individuals who engage in self-injurious behaviour (SIB). The present study examined the use of clothing as a socially acceptable alternative to self-restraint to reduce SIB and other topographies of self-restraint in an adolescent diagnosed with autism. Two separate functional analyses were conducted for SIB prior to the self-restraint evaluation. A reversal design was then used to evaluate the effect of non-contingent access to a hooded sweatshirt on rates of self-restraint and SIB. Both functional analyses suggested that SIB was maintained by access to tangible items, attention, and perhaps also by escape from demands. The results of the self-restraint evaluation indicated that when access to a hooded sweatshirt was provided, rates of other topographies of self-restraint dropped to zero and rates of SIB were reduced by 54% from baseline levels. These results highlight the idiosyncratic relationship between SIB and self-restraint and suggest that systematic evaluations of this relationship may lead to reductions in both behaviours.
Out of sight: who cares? Restraint, segregation and seclusion review: progress report
- Author:
- CARE QUALITY COMMISSION
- Publisher:
- Care Quality Commission
- Publication year:
- 2022
- Pagination:
- 63
- Place of publication:
- Newcastle upon Tyne
This report describes the progress made on the recommendations made in ‘Out of sight – who cares?’ report, published in October 2020, which looked at the use of restraint, seclusion and segregation in care services. The recommendations were made for people with mental ill health, people with a learning disability and autistic people. However, there is more of a focus on people with a learning disability and autistic people, as we visited more services where they lived. This is reflected in the balance of evidence in this report. This report updates on key themes, which means some recommendations are grouped together, rather than being in numerical order. The report finds that no recommendations have been fully achieved. Seventeen recommendations have not been achieved, including: people have a home and the right support in place; people have the right community services commissioned; people have the right support to avoid crisis; people have their rights understood; people receive the right support in hospital; people have skilled staff to support them; people have bespoke services; people who experience restrictive interventions have these reported to CQC; people who are segregated in hospital experience good quality regular independent reviews; people have meaningful Care (Education) and Treatment Reviews because providers and commissioners are accountable; all people in segregation in hospital are recognised through updating the definition of long-term segregation; people see a reduction in the use of restrictive interventions; people in children’s and adult social care services experiencing restrictive interventions would have these reported to regulators. The report also finds that four recommendations have been partly achieved: improving how CQC regulates services for people with a learning disability and autistic people; recording data to improve local services; people’s experience of person-centred care; people who experience restrictive interventions have regular oversight by commissioners. (Edited publisher abstract)
Restraint, segregation and seclusion review: progress report (December 2021)
- Author:
- CARE QUALITY COMMISSION
- Publisher:
- Care Quality Commission
- Publication year:
- 2021
- Place of publication:
- Newcastle upon Tyne
This short report comments on the progress following publication of ‘Out of sight – who cares?’ report and highlights the main areas where further work is still needed. ‘Out of sight – who cares?’, published in October 2020, looked at the use of restraint, seclusion and segregation in care services for people with a mental health condition, a learning disability or autistic people. The health and care system has taken action to understand the needs of people with a learning disability and autistic people in inpatient units. However, there is still much to be done. Too many people have still not seen their care improved. While the health and care system has made a commitment to increase the range of community support available to help prevent hospital admissions, this commitment now needs to be converted into real change. The findings of this report show that too many people are still in inpatient wards and they are spending too long in hospital. Getting the right care provision, support services and early intervention in the community will prevent hospital admissions, reduce the time it takes to discharge people into the right support and enable people to live their best lives. (Edited publisher abstract)
DHSC's response to CQC's 'Out of sight – who cares?: restraint, segregation and seclusion' report
- Author:
- GREAT BRITAIN. Department of Health and Social Care
- Publisher:
- Great Britain. Department of Health and Social Care
- Publication year:
- 2021
- Place of publication:
- London
The Government response to the Care Quality Commission's report on the use of restraint, seclusion and segregation in care services. The report described the current state of the care system for children, young people and adults who are subject to restrictive interventions, and who are cared for in a range of settings, focusing on learning disabilities and autism. The report made four key recommendations: people with a learning disability and or autistic people who may also have a mental health condition should be supported to live in their communities; people who are being cared for in hospital must receive high-quality, person-centred, specialised care in small units; there must be renewed attempts to reduce restrictive practice by all health and social care providers, commissioners and others; there must be increased oversight and accountability for people with a learning disability, and or autistic people who may also have a mental health problem. (Edited publisher abstract)
Thematic review of the Independent Care (Education) and Treatment Reviews
- Author:
- HOLLINS Sheila
- Publisher:
- Great Britain. Department of Health and Social Care
- Publication year:
- 2021
- Place of publication:
- London
This thematic review highlights common themes and findings from detailed analysis of 26 (a third) of the 77 IC(E)TRs to derive thematic learning and identify the common concerns and issues relating to the care and treatment of people with learning disabilities and/or autism in long-term segregation (LTS). The analysis reveals that some individuals who had their cases reviewed were placed in segregation in order to cater to individual needs (for example to experience less noise or overstimulation). For most, however, segregation was being used in response to challenging behaviour in the absence of the right therapeutic care and environment. Some hospitals attempted to create a more ‘home like’ environment by adapting a room or suite of rooms in a part of the hospital, with nearly half of the 26 cases in the sample being segregated in this way. While the other half ranged from more ‘acceptable’ single rooms to high security environments, some without facilities or comfort, including some bare cells with hatches for surveillance, communication and to deliver food. In this review the findings, aims, actions and recommendations are separated into 7 improvement areas. These are: to improve substantially the quality of diagnosis, treatment and care in hospitals; to commission, skilled, safe, kind and appropriate person-centred support; to ensure there is accountability for action particularly by commissioners; to listen to patients and families, put them at the centre of care planning and ensure skilled and appropriate representation or advocacy; to make money work; to continue to provide oversight and independent scrutiny; other areas or findings. (Edited publisher abstract)
The Oversight Panel's interim conclusions and recommendations
- Author:
- INDEPENDENT CARE (EDUCATION) AND TREATMENT REVIEWS OVERSIGHT PANEL
- Publisher:
- Great Britain. Department of Health and Social Care
- Publication year:
- 2021
- Place of publication:
- London
This document summarises the interim conclusions of the Independent Care (Education) and Treatment Reviews Oversight Panel. It outlines the headline findings from a thematic review of 26 independently chaired Care (Education) and Treatment Reviews (IC(E)TRs), from discussions with IC(E)TR independent chairs, and Panel meetings. These have been grouped in to 6 ‘improvement areas’. Against each of these improvement areas we have described ‘what we want to see’ – that is what we consider to be the correct aims and objectives in those areas. The Oversight Panel has identified some actions which need to commence immediately but require a funded project plan. The Panel has also identified other actions and recommendations which need further development and would be completed for a final report in 2021. These actions and proposed recommendations are specifically intended to improve outcomes and the immediate circumstances for people in long term segregation (LTS). However, the Oversight Panel also strongly recommends that these areas for improvement should apply more generally for all people with learning disabilities and/or autistic people who are inpatients or at risk of admission. The improvement areas identified by the Panel are: to improve substantially the quality of diagnosis, treatment and care in hospitals; to commission, skilled, safe, kind and appropriate person-centred support; to ensure there is accountability for action particularly by commissioners; to listen to patients and families, put them at the centre of care planning and ensure skilled and appropriate representation/ advocacy; to make money work; to continue to provide oversight and independent scrutiny. (Edited publisher abstract)