This guide explains how, with the right support, people with a learning disability can have their say about the NHS. Support for people to give feedback includes: including people with a learning disability in feedback and engagement work; tapping in to local networks and voluntary organisations to ensure a larger number of people with a learning disability can be reached; ensuring information and questions presented as part of a survey or other feedback initiatives are easy to understand; involving people with a learning disability in designing and running feedback events so that they become more engaging and effective sessions; and ensuring people feel more empowered during any event where they are encouraged to have their say about healthcare.
(Edited publisher abstract)
This guide explains how, with the right support, people with a learning disability can have their say about the NHS. Support for people to give feedback includes: including people with a learning disability in feedback and engagement work; tapping in to local networks and voluntary organisations to ensure a larger number of people with a learning disability can be reached; ensuring information and questions presented as part of a survey or other feedback initiatives are easy to understand; involving people with a learning disability in designing and running feedback events so that they become more engaging and effective sessions; and ensuring people feel more empowered during any event where they are encouraged to have their say about healthcare.
(Edited publisher abstract)
Subject terms:
user views, user participation, empowerment, learning disabilities, surveys;
This report has been written with care managers, senior service managers, commissioners of services and interested practitioners in mind. It aims to explore the issues of mental health needs as understood by young people themselves and their family carers. To present their views about the gaps in services, what they find helpful and what kinds of support they would like to be available highlight some new and exciting approaches to addressing the mental health needs of young people with learning disabilities and to recommend ways in which services and support can be improved for both young people with learning disabilities and their family carers.
This report has been written with care managers, senior service managers, commissioners of services and interested practitioners in mind. It aims to explore the issues of mental health needs as understood by young people themselves and their family carers. To present their views about the gaps in services, what they find helpful and what kinds of support they would like to be available highlight some new and exciting approaches to addressing the mental health needs of young people with learning disabilities and to recommend ways in which services and support can be improved for both young people with learning disabilities and their family carers.
Extended abstract:
Author
FOUNDATION FOR PEOPLE WITH LEARNING DISABILITIES
Title
Making us count: identifying and improving mental health support for young people with learning disabilities: a research report.
Publisher
Mental Health Foundation, 2005
Summary
This report has been written with care managers, senior service managers, commissioners of services and interested practitioners in mind. It aims to explore the issues of mental health needs as understood by young people themselves and their family carers, to present their views about the gaps in services, what they find helpful and what kinds of support they would like to be available, and highlight some new and exciting approaches to addressing the mental health needs of young people with learning disabilities and to recommend ways in which services and support can be improved for both young people with learning disabilities and their family carers.
Context
Approximately one-third of a million young people in the UK have learning disabilities. Of these, 40% are likely to develop a mental health problem. In 2001 the Foundation for People with Learning Disabilities convened an enquiry to explore a very neglected area: the mental health needs of young people with learning disabilities. The result was the Count Us In report (2002). The range of mental health problems experienced by such people is similar to the general population. However, they are far more likely to develop emotional difficulties such as depression and anxiety and these often go unrecognised and untreated. There are difficulties in accessing suitable college or work placements and leisure opportunities and maintaining friendships or relationships and these often triggered mental health problems. Young people also encountered difficulties in getting appropriate services. Pathways to referral for help and support were vague. There were often long time delays to access assessment and interventions; young people were shunted between mainstream and specialist services or did not ‘fit in' anywhere.
Contents
The present report offers some practical advice that practitioners and commissioners can take on board to improve the range of services available. A preface gives the background and is followed by an executive summary and an easy to read summary. Chapters then discuss involving young people and their families in research; towards better support; how young people with learning disabilities and their family carers understand anxiety and depression; supporting young people with learning disabilities and mental health needs from a minority ethnic community; improving emotional support for young people with learning disabilities; and the well-being project: identifying and meeting the needs of young people with profound and multiple learning disabilities and their carers. Conclusions and recommendations are followed by appendices describing a mapping exercise, policy in Scotland , and randomised controlled trials.
Conclusion
The conclusion that one in four young people with learning disabilities will experience mental health problems each year may even be an underestimate, so it is essential there is a range of approaches and services to respond. Opportunities for friendships, social and leisure activities, education and employment enhance self-esteem. They should be at the centre of planning. Language can be a difficulty. Problems are not recognised. Parents do not want children given another label. Recommendations are made on mental health education and promotion, person-centred approaches and transition, and identifying mental health problems and providing appropriate support.
63 references
Subject terms:
learning disabilities, mental health services, user views, vulnerable children, young people;
This is a is a peer support training pack to help young people with learning disabilities feel stronger about themselves as they go through the transition from school to adult life. It was developed by young people who had already experienced transition and covers subjects such as friends, feelings, growing up and where to get support from. The pack provides materials and ideas for groups and group supporters.
This is a is a peer support training pack to help young people with learning disabilities feel stronger about themselves as they go through the transition from school to adult life. It was developed by young people who had already experienced transition and covers subjects such as friends, feelings, growing up and where to get support from. The pack provides materials and ideas for groups and group supporters.
Subject terms:
learning disabilities, peer groups, user views, service transitions, empowerment, peer support;
Standing Conference of Voluntary Organisation for People with a Learning Disabil
Publication year:
2000
Pagination:
34p.
Place of publication:
Cardiff
Examines how voluntary organisations for people with learning disabilities can involve their service users. Sees user involvement as comprising four stages: information, consultation, participation, and sharing power and control.
Examines how voluntary organisations for people with learning disabilities can involve their service users. Sees user involvement as comprising four stages: information, consultation, participation, and sharing power and control.
Subject terms:
learning disabilities, severe learning disabilities, user participation, user views, voluntary organisations, communication, consultation;
This guidance supports CQC operational staff to better identify and respond to services that might be at risk of developing closed culture. A closed culture is defined as a poor culture that can lead to harm, human rights breaches and abuse. Features of a closed culture include: staff and/or management no longer seeing people using the service as people; very few people being able to speak up for themselves, for lack of support or fear; people who use the service more likely to be at risk of harm, including deliberate harm. The guidance helps inspectors: understand what a closed culture is; identify a closed culture; understand what potential breaches of the CQC fundamental standards involving human rights look like; be alert to signs of breaches of standards in services with a closed culture; know the right questions to ask at the right time; ensure the voices of people who use services are sought, listened to and acted on; determine next steps if evidence is uncovered that suggests people are at risk of harm or have experienced harm or abuse.
(Edited publisher abstract)
This guidance supports CQC operational staff to better identify and respond to services that might be at risk of developing closed culture. A closed culture is defined as a poor culture that can lead to harm, human rights breaches and abuse. Features of a closed culture include: staff and/or management no longer seeing people using the service as people; very few people being able to speak up for themselves, for lack of support or fear; people who use the service more likely to be at risk of harm, including deliberate harm. The guidance helps inspectors: understand what a closed culture is; identify a closed culture; understand what potential breaches of the CQC fundamental standards involving human rights look like; be alert to signs of breaches of standards in services with a closed culture; know the right questions to ask at the right time; ensure the voices of people who use services are sought, listened to and acted on; determine next steps if evidence is uncovered that suggests people are at risk of harm or have experienced harm or abuse.
(Edited publisher abstract)
Subject terms:
adult social care, adult abuse, care providers, inspection, human rights, organisational culture, learning disabilities, regulation, risk assessment, user views;
Booklet to help families, parents and carers of those with a learning disability or autism give feedback, raise concerns and make complaints across education, health and social care. It provides information on the difference between giving feedback, raising a concern or making a complaint. It also provides tips to help people be confident about having conversations with people in all the organisations involved in the lives of those they care for and to feel more empowered to navigate the complex systems of feedback, concerns and complaints.
(Edited publisher abstract)
Booklet to help families, parents and carers of those with a learning disability or autism give feedback, raise concerns and make complaints across education, health and social care. It provides information on the difference between giving feedback, raising a concern or making a complaint. It also provides tips to help people be confident about having conversations with people in all the organisations involved in the lives of those they care for and to feel more empowered to navigate the complex systems of feedback, concerns and complaints.
(Edited publisher abstract)
Subject terms:
learning disabilities, autism, autistic spectrum conditions, complaints, carers, parents, user views, health care, education, social care;
Sets out aims and rationale of the Treat Me Well campaign, which is intended to transform how the NHS treats people with a learning disability. The report starts with an assessment of the earlier campaign Death by Indifference (2007), which highlighted the serious consequences of healthcare inequalities and helped increase awareness and greater commitment from health care organisation. It then presents findings of new research to find out how people with a learning disability feel about their experiences of going to hospital and the views of healthcare professionals on the quality of care. Survey results show that: over 1 in 5 think that healthcare staff are bad at explaining things to them when they are at the hospital; 75 per cent said their experience of going to the hospital would be improved if staff explained things in a way that was easy to understand; almost a quarter of healthcare professionals have never attended training on meeting the needs of patients with a learning disability and over 1 in 3 think the quality of healthcare received by patients with a learning disability is worse than that received by patients without a learning disability; almost half of healthcare professionals think that a lack of training on learning disability might be contributing to avoidable deaths. The report outlines a framework to support system-wide change, with a focus on: compulsory learning disability training; sufficient resources for staff; strong leadership for government and the NHS; making communication accessible to all; allowing extra time in appointments; and providing written information in an accessible format.
(Edited publisher abstract)
Sets out aims and rationale of the Treat Me Well campaign, which is intended to transform how the NHS treats people with a learning disability. The report starts with an assessment of the earlier campaign Death by Indifference (2007), which highlighted the serious consequences of healthcare inequalities and helped increase awareness and greater commitment from health care organisation. It then presents findings of new research to find out how people with a learning disability feel about their experiences of going to hospital and the views of healthcare professionals on the quality of care. Survey results show that: over 1 in 5 think that healthcare staff are bad at explaining things to them when they are at the hospital; 75 per cent said their experience of going to the hospital would be improved if staff explained things in a way that was easy to understand; almost a quarter of healthcare professionals have never attended training on meeting the needs of patients with a learning disability and over 1 in 3 think the quality of healthcare received by patients with a learning disability is worse than that received by patients without a learning disability; almost half of healthcare professionals think that a lack of training on learning disability might be contributing to avoidable deaths. The report outlines a framework to support system-wide change, with a focus on: compulsory learning disability training; sufficient resources for staff; strong leadership for government and the NHS; making communication accessible to all; allowing extra time in appointments; and providing written information in an accessible format.
(Edited publisher abstract)
Subject terms:
learning disabilities, health care, user views, health professionals, surveys, good practice, quality improvement, hospitals;
MENCAP, BRITISH INSTITUTE OF LEARNING DISABILITIES, RENTON FOUNDATION
Publisher:
Mencap
Publication year:
2011
Pagination:
72p.
Place of publication:
London
People with profound and multiple learning disabilities are some of the most excluded in society. The Involve Me project focuses on how to involve them in decision-making and consultation. This guide to how to involve people with profound and multiple learning disabilities is partly based on an independent evaluation of the Involve Me project. It includes a description of the 4 Involve Me sites and approaches to involvement, and a summary of recommendations from the evaluation. The guide covers involvement in choice and decision-making, capacity and consent for people with profound and multiple learning disabilities, the key Involve Me messages, and information about the accompanying DVD resource which contains information and materials to support the Involve Me key messages.
People with profound and multiple learning disabilities are some of the most excluded in society. The Involve Me project focuses on how to involve them in decision-making and consultation. This guide to how to involve people with profound and multiple learning disabilities is partly based on an independent evaluation of the Involve Me project. It includes a description of the 4 Involve Me sites and approaches to involvement, and a summary of recommendations from the evaluation. The guide covers involvement in choice and decision-making, capacity and consent for people with profound and multiple learning disabilities, the key Involve Me messages, and information about the accompanying DVD resource which contains information and materials to support the Involve Me key messages.
Subject terms:
learning disabilities, multiple disabilities, service users, severe learning disabilities, user participation, user views, consultation, decision making;
This publication draws on the findings of a research project to highlight best practice in supporting young people with learning disabilities to live independently, and provide practical advice for families about the key things they need to do to help their child to achieve an ordinary, happy life. The study interviewed 15 young people between the ages of 18 and 30, their families and support. Ten case studies are used throughout to illustrate examples of good practice, and the views of carers and supporters are also included.
This publication draws on the findings of a research project to highlight best practice in supporting young people with learning disabilities to live independently, and provide practical advice for families about the key things they need to do to help their child to achieve an ordinary, happy life. The study interviewed 15 young people between the ages of 18 and 30, their families and support. Ten case studies are used throughout to illustrate examples of good practice, and the views of carers and supporters are also included.
Subject terms:
independent living, housing, learning disabilities, personal finance, user views, service transitions, young adults, young people, carers, friendship;
The issue of access is at the forefront of the practical challenges facing people with learning disabilities and people working with or supporting them. This text brings together evidence, narratives and discussions that question and advance our understanding of the concept of access for people with learning disabilities. The authors draw on their experience to analyse a wide range of situations, including access to public spaces, citizenship education, community participation, and employment. Through a series of related chapters, key researchers in the field of inclusion and learning disabilities explore the concept of access in relation to a wide variety of topics including: accessible information; public buildings and spaces; heritage sites; citizenship education; advocacy; social networks; health care; employment; and, relationships . Proposing a re-conceptualisation of the risk associated with promoting access for people with learning disabilities, this book will be of interest to students, researchers and professionals involved in inclusion and disability issues.
The issue of access is at the forefront of the practical challenges facing people with learning disabilities and people working with or supporting them. This text brings together evidence, narratives and discussions that question and advance our understanding of the concept of access for people with learning disabilities. The authors draw on their experience to analyse a wide range of situations, including access to public spaces, citizenship education, community participation, and employment. Through a series of related chapters, key researchers in the field of inclusion and learning disabilities explore the concept of access in relation to a wide variety of topics including: accessible information; public buildings and spaces; heritage sites; citizenship education; advocacy; social networks; health care; employment; and, relationships . Proposing a re-conceptualisation of the risk associated with promoting access for people with learning disabilities, this book will be of interest to students, researchers and professionals involved in inclusion and disability issues.
Subject terms:
learning disabilities, leisure activities, risk, social exclusion, user views, access to services, adults, advocacy, anti-discriminatory practice, citizenship, disabilities, education, employment, health care;