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The treatment of autistic people and people with learning disabilities: fifth report of session 2021-22
- Author:
- GREAT BRITAIN. Parliament. House of Commons. Health and Social Care Committee
- Publisher:
- Great Britain. House of Commons
- Publication year:
- 2021
- Pagination:
- 50
- Place of publication:
- London
This report sets out the findings of an inquiry into the treatment of autistic people and people with learning disabilities. There are over 2,055 people in secure institutions today where they are unable to live fulfilled lives and are too often subject to treatment that is an affront to a civilised society. This is often because autistic people and those with learning disabilities are treated as if their condition is an illness instead of a fundamental part of their identity: the tragic result of this fatal misunderstanding is that they often do then develop mental or physical illnesses which are used to justify their continued detention. The Committee reviewed international best practice, such as the Trieste model of care, in order to identify where necessary change needs to be implemented. We have also assessed how the wellbeing of autistic people and people with learning disabilities can be improved in any setting, whether inpatient or community, and the need for independent reviews into the deaths of autistic people and people with learning disabilities. The report addresses the following key areas: Chapter 1 – community support, reducing the number of autistic people and people with learning disabilities in inpatient facilities, and the benefits of the Trieste model; Chapter 2 – the use of restrictive practices in inpatient facilities and wider concerns relating to the appropriateness and continued use of such facilities; and Chapter 3 – the wellbeing of and accountability for autistic people and people with learning disabilities including the creation of a new role, the Intellectual Disability Physician, and the need for independent reviews into the deaths of autistic people and people with learning disabilities. (Edited publisher abstract)
Learning disability mortality review (LeDeR): action from learning report 2020/21
- Author:
- NHS ENGLAND
- Publisher:
- NHS England
- Publication year:
- 2021
- Pagination:
- 60
- Place of publication:
- Redditch
The fifth annual University of Bristol LeDeR report considers reviews of deaths notified to LeDeR in the calendar years 2018 to 2020, summarises what is working well and makes recommendations to address inequalities and prevent premature mortality among people with a learning disability. This action from learning report highlights some of the many activities and measures health and social care services have put in place since our last report in July 2020, both locally and nationally. It also updates the commitments that we made in both that report and the COVID-19 action from learning report, published in November 2020. The report covers: COVID-19, including Covid vaccination programme and adapting in lockdown; management of medical conditions – respiratory conditions, seasonal flu vaccination, cardiac care, identifying deterioration/sepsis, diabetes, constipation, cancer, epilepsy; and changing how we work – Do Not Attempt Cardio Pulmonary Resuscitation, end of life care, reasonable adjustments, annual health checks (AHCS), STOMP-STAMP (medication), inequalities for people from minority ethnic communities. (Edited publisher abstract)
Implementing evidence-based practice: the challenge of delivering what works for people with learning disabilities at risk of behaviours that challenge
- Authors:
- DENNE Louise D., et al
- Journal article citation:
- Tizard Learning Disability Review, 25(3), 2020, pp.133-143.
- Publisher:
- Emerald
Purpose: There is an apparent disconnect between the understanding of best practice and service delivery in the support of people with learning disabilities at risk of behaviours that challenge. We suggest, is a problem of implementation. The purpose of this paper is to explore reasons why this might be the case: a failure to recognise the collective works of successive generations of research and practice; and a failure to address the macro-systems involved and systems changes needed to support implementation. Design/methodology/approach: This paper reviews the consensus that exists in respect of best practice. Drawing upon ideas from implementation science the paper highlights the complexities involved in the implementation of all evidence-based practices and uses this as a framework to propose ways in which an infrastructure that facilitates the delivery of services in the learning disabilities field might be built. Findings: This paper highlights core recommended practices that have been consistent over time and across sources and identifies the systems involved in the implementation process. This paper demonstrates that many of the necessary building blocks of implementation already exist and suggests areas that are yet to be addressed. Critically, the paper highlights the importance of, and the part that all systems need to play in the process. Originality/value: In the absence of any generalised implementation frameworks of evidence-based practice in the learning disabilities field, the paper suggests that the findings may provide the basis for understanding how the gap that exists between best practice and service delivery in the support of people with a learning disability at risk of behaviours that challenge might be closed. (Edited publisher abstract)
Guidance for the treatment and management of COVID‐19 among people with intellectual disabilities
- Authors:
- ALEXANDER Regi, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 17(3), 2020, pp.256-269.
- Publisher:
- Wiley
The current COVID‐19 pandemic is a pressing world crisis and people with intellectual disabilities (IDs) are vulnerable due to disparity in healthcare provision and physical and mental health multimorbidity. While most people will develop mild symptoms upon contracting severe acute respiratory syndrome coronavirus‐2 (SARS‐CoV‐2), some will develop serious complications. The aim of this study is to present guidelines for the care and treatment of people with IDs during the COVID‐19 pandemic for both community teams providing care to people with IDs and inpatient psychiatric settings. The guidelines cover specific issues associated with hospital passports, individual COVID‐19 care plans, the important role of families and carers, capacity to make decisions, issues associated with social distancing, ceiling of care/treatment escalation plans, mental health and challenging behavior, and caring for someone suspected of contracting or who has contracted SARS‐CoV‐2 within community or inpatient psychiatric settings. The authors have proposed that the included conditions recommended by Public Health England to categorize someone as high risk of severe illness due to COVID‐19 should also include mental health and challenging behavior. There are specific issues associated with providing care to people with IDs and appropriate action must be taken by care providers to ensure that disparity of healthcare is addressed during the COVID‐19 pandemic. The authors recognize that their guidance is focused upon healthcare delivery in England and invite others to augment their guidance for use in other jurisdictions. (Edited publisher abstract)
Multisensory rooms: essential characteristics and barriers to effective practice
- Author:
- GRACE Joanna
- Journal article citation:
- Tizard Learning Disability Review, 25(2), 2020, pp.67-75.
- Publisher:
- Emerald
This paper aims to identify the characteristics practitioners consider essential to effective multisensory rooms and the barriers they experience when trying to realise the potential of such rooms. Design/methodology/approach: The paper presents semi-structured interviews with 27 multisensory room practitioners from a range of backgrounds followed by analysis to identify key characteristics and barriers. Findings: Eleven positive room characteristics were identified. The three deemed most significant were that the rooms are dark, activity associated and uninterrupted spaces. Two negative room characteristics were identified: inaccessible design and broken equipment. Ten barriers to effective multisensory room practice were identified and grouped according to themes of logistics, suboptimal usage and practitioner capabilities.Research limitations/implications: The research focuses on a small self-selecting sample, coded by one person acting independently of any institution. This is an under researched area which would benefit from further more rigorous investigation. Practical implications: This research enables practitioners to remove barriers to effective multisensory room practice and to focus on the characteristics most significant in generating benefits for room users. Understanding of the essential characteristics and potential barriers to effective practice will allow practitioners to better exploit limited resources of time, money and staffing.Originality/value: Past research into multisensory rooms has focused on specific user groups or specific multisensory environments. This research examined multisensory room practice across both a range of environments and a range of users, giving an original overview of current multisensory room usage in the UK. (Publisher abstract)
Consensus‐based good practice guidelines for clinical psychologists to support care staff in enabling sexual expression in people with intellectual disabilities - a Delphi study
- Authors:
- ENGLISH Brad, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 33(2), 2020, pp.268-282.
- Publisher:
- Wiley
Background: Care staff supporting people with intellectual disabilities (PWID) report accepting views on PWID's sexual expression, but people with intellectual disabilities report their sexual expression is restricted by care staff. Methods: This study recruited a panel of 17 UK clinical psychologists experienced in helping care staff support PWID's sexual expression. This study used the Delphi Method to develop consensus‐based practice guidelines for UK clinical psychologists supporting care staff in this way. Results: Having proposed three guidelines each in Round One, panel members reached consensus (≥90% agreement) that 12 were important, falling under four themes: “Addressing staff attitudes,” “Addressing uncertainty about rights and responsibilities of people with intellectual disabilities,” “Locating the problem, being part of the solution,” and “Supporting care staff to understand and reflect upon their role.” Conclusions: Clinical psychologists help care staff support PWID's sexual expression by normalizing care staff concerns, encouraging reflection, clarifying PWID's rights, and prompting those at managerial and service level to support care staff. (Edited publisher abstract)
National Mental Capacity Forum: Chair's annual report 2017
- Author:
- FINLAY Baroness
- Publisher:
- Great Britain. Her Majesty's Government
- Publication year:
- 2018
- Pagination:
- 41
- Place of publication:
- London
Annual report of the Chair of the National Mental Capacity Forum, covering the Forum’s work over the year, the Chair’s priorities for the coming year, and details of Forum members. Each chapter describes the achievements and ongoing work against the four priorities for 2017: Improving understanding; Hearing the voice of the person; Supporting carers; and Reducing and preventing exploitation. Achievements include the development of guidelines and training material for front line staff in the financial and banking sector and increased awareness of fraud and scam and the risks for people ‘in vulnerable circumstances.’ The report includes illustrative good practice examples of initiatives relevant to the implementation of the Mental Capacity Act. (Edited publisher abstract)
People with dementia and learning disabilities: reasonable adjustments
- Author:
- PUBLIC HEALTH ENGLAND
- Publisher:
- Public Health England
- Publication year:
- 2018
- Place of publication:
- London
This guide aims to help staff in public health, health services and social care to provide services that are accessible to people with learning disabilities that have or are at risk of developing dementia. It summarises current evidence and highlights policy and guidelines relating to people with learning disabilities and dementia. It includes links to a wide range of online resources, including those specifically about dementia in people with learning disabilities and to easy-read resources and apps related to dementia in general. The guide also includes case studies and examples of reasonable adjustments to services made in relation to people with learning disabilities and dementia. (Edited publisher abstract)
Supporting parents who have learning disabilities: strategic briefing
- Authors:
- TURNEY Danielle, TARLETON Beth, TILBURY Nadine
- Publishers:
- Research in Practice, Research in Practice for Adults
- Publication year:
- 2018
- Pagination:
- 32
- Place of publication:
- Dartington
An overview of the available evidence on 'what works' in working with parents who have a learning disability, including case study examples of good practice. The briefing aims to enable strategic leaders to: understand the practice tensions in this area, become familiar with the key research, and gain a greater understanding as to what will best support parents who have a learning disability. (Edited publisher abstract)
Dignity in health care for people with learning disabilities
- Author:
- HARDY Steve
- Publisher:
- Royal College of Nursing
- Publication year:
- 2017
- Pagination:
- 26
- Place of publication:
- London
- Edition:
- 3rd ed.
This guidance aims to improve dignity in health care for people with learning disabilities. It is designed primarily to support the nursing workforce but may also be useful for other health care and social care staff. The publication focuses on the experiences of people with learning disabilities, areas for improvement in relation to dignity, practical ideas on what nurses can do to improve dignity and sources of further information and support. It covers the importance of understanding people's health needs, respecting individuals, getting to know the person, having choices making decisions, feeling safe and communication. It also includes information relating to the particular health needs that people with learning disabilities may have, and provides guidance on working in collaboration with other service providers. It also includes good practice examples. The guide has been developed with the involvement of people with learning disabilities who use health care services in South East London, who shared their experiences at 3 focus group meetings. (Edited publisher abstract)