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People with learning disabilities are living longer. Older people with learning disabilities should be included in policies and plans that are for all older people. National plans and policies for older people often do not say anything about older people with learning disabilities, and it is hard to know whether older people with learning disabilities are benefiting. People who plan services locally often do not have good information on older people with learning disabilities. Using the Equalities Act 2010 could help people who plan services and write policy to think about older people with learning disabilities but this is not happening at the moment. People who work with older people with learning disabilities should be aware of policy for all older people, so that older people with learning disabilities do not miss out. This paper seeks to explore the opportunities and challenges generated by current policy, guidance and legislation in England relating to older people, in terms of the practical implications for older people with learning disabilities. Using the broad themes housing, employment, social inclusion and isolation, care and support, and promoting better health and well-being, this paper discusses potential practical opportunities and concerns for older people with learning disabilities arising from policy and legislation such as current initiatives regarding integration, personalisation and the dementia policy. Consideration is given to the implications of changing policy and practice for both current and future generations of people with a learning disability as they reach older age. This discussion paper concludes that whilst there is potential for older people with a learning disability to benefit from policy and practice aimed at improving the lives of older people generally, the tendency for policy to be targeted at specific groups without adequately considering the diversity of those groups often leaves those with a learning disability at the margins of being able to make the most of changes. [ABSTRACT FROM AUTHOR]

An introduction to the issue is presented discussing reports related to studies in learning disabilities.

The article presents an introductory statement to the March 2006 issue of the "Journal of Learning Disabilities." Three papers in the issue highlight the gap between the rhetoric of inclusion and involvement and the reality of people's experiences. Another paper reflects on the difficulties of obtaining people's views on their health care. One research highlights the hopes and dreams of policy makers, implementers and practitioners for the provision of services for older people with learning disabilities.

Accessible summary • This paper is about a partnership between a self-advocate with learning disabilities and a university student. • We think it is important for people with learning disabilities to be involved in research as partners with university researchers. • We think it is important for people with learning disabilities to have the opportunity to tell their story. We believe it can help others; both people with learning disabilities, carers and researchers. • We think that people with learning disabilities are not taken seriously as researchers by university researchers. The aim of this paper is to reflect on research collaboration between a research participant with learning disability and a nondisabled doctoral student. In the paper we explore the inclusiveness of our research partnership and how collaborative life histories can be empowering both for participants and researchers. We suggest that it is possible to make any kind of research inclusive, although doctoral projects can perhaps not be fully inclusive because of academic requirements. We argue that people with learning disabilities should have the opportunity to be involved in research and that collaborative writing between nondisabled researchers and people with learning disabilities is no less valuable than other disability research and should be taken seriously by policy makers and academia. A second aim of the paper is to reflect on our position, as a nondisabled researcher and a researcher with learning disabilities, in the field of disability studies. We state that as researchers we have little power in the field of disability studies because researchers with learning disabilities are not taken seriously and nondisabled researchers tend to be met with scepticism. [ABSTRACT FROM AUTHOR]

Accessible summary We wanted to know what people with learning disabilities know about dementia. We asked service users what the word meant to them, if they knew anyone with dementia, and what it was like to share a house with someone who has dementia. We learnt that: • Service users can know a lot about dementia. • Living with someone with dementia can be really hard – and staff do not always have enough time for everyone else. • Services should think more about how dementia affects everyone – not just the person who has the dementia. This paper reports on research that illuminates how people with a learning disability understand dementia and indicates the implications of these understandings for developing appropriate models of care. As this new policy and practice area struggles to provide appropriate and effective models of care for people with a learning disability and dementia, an awareness of service users’ understandings of dementia leads to a number of important insights. The wider research programme from which this paper is drawn aims to identify best practice in supporting people with learning disabilities to stay in their own homes as they grow older and develop dementia. A combination of focus groups, ethnography and individual interviews were conducted at eight sites across England. Participants were people with a learning disability who had dementia, and those who have lived with someone with dementia. The findings have the potential to improve support to this population as they grow older. [ABSTRACT FROM AUTHOR]

People are living longer, and policymakers are talking about 'active ageing'. Active ageing can mean older people being still physically active, still working and still being involved in their local communities. Most policy makers do not talk about people with learning disabilities and active ageing, but this paper does. We also say that people with learning disabilities should be involved in inclusive active ageing research. People (with and without learning disabilities) are living longer. Demographic ageing creates challenges and the leading policy response to these challenges is 'active ageing'. 'Active' does not just refer to the ability to be physically and economically active, but also includes ongoing social and civic engagement in the communities of which older people are a part. Active ageing should apply to all citizens, including the experiences of older people with learning disabilities. This literature based paper explores the focus of active ageing discussions in relation to the general population drawing comparisons with the experiences of older people with learning disabilities. It points out that older people with learning disabilities and their experiences are largely missing from broader policy discussions of active ageing. The paper concludes by arguing for inclusive research in active ageing which takes account of the concerns and interests of older people with learning disabilities. [ABSTRACT FROM AUTHOR]

Accessible summary •People with a learning disability can have epilepsy and can have long seizures. •The treatment for long seizures is rectal diazepam given up the back passage. •Some carers and people with epilepsy do not like this. •Buccal midazolam is a treatment for long seizures that is given by mouth. •Buccal midazolam seems to work as well as rectal diazepam in children with epilepsy. •New guidance to doctors says they can use buccal midazolam in adults for long seizures. •People with learning disabilities and carers can ask their doctor to prescribe buccal midazolam instead of rectal diazepam to treat long seizures. Background Buccal midazolam is widely used in children for the emergency treatment of epilepsy, and these children are graduating into adult learning disability services. Aims The aim of this paper was to appraise the evidence for buccal midazolam as a treatment for prolonged seizures in adults with learning disabilities. Method A literature search was performed and the identified papers appraised. Results The literature search identified only one randomized trial for buccal midazolam as emergency treatment of seizures, and this was in children and adolescents. It showed that buccal midazolam was as effective as rectal diazepam. Conclusions There is evidence that buccal midazolam is effective, but it is unlicensed for this purpose. Rectal diazepam should remain the first choice, but buccal midazolam should be discussed with patients and carers as an alternative. Declaration of interest nil. [ABSTRACT FROM AUTHOR]

An introduction is provided which discusses articles within the issue on the theme of citizenship, vulnerability, representation and consent for people with learning disabilities.

Accessible summary • We held a bereavement and loss group for people with learning disabilities. • The group ran for 8 weeks and there were five adults who came to the group. • The group helped people to share their feelings and experiences to help them cope with their bereavement. Following evidence based literature, the Birmingham Clinical Psychology Service for People with Learning Disabilities ran a Loss and Bereavement Psychotherapy Group. The group consisted of five adults with mild learning disabilities, who met for 8 consecutive weeks. This paper reports the process of setting up a bereavement group for people with learning disabilities, detailing the development of session plans and structure of the group. The authors encourage allied health professionals to consider setting up similar groups within their learning disabilities services, bearing in mind reflections on practical issues highlighted within this paper. [ABSTRACT FROM AUTHOR]

Accessible summary • There is now a statement from the United Nations that sets out rights for disabled people. One of their rights is to participate in their communities. • One way of participating is when people with intellectual disabilities do research on issues that are of concern to them. This is called inclusive research. • No Longer Researching About Us Without Us was a national project to support people with intellectual disabilities and support workers to do inclusive research. It went on for 18 months. • This paper tells about two of the projects that were done by getting people in some services together to talk about what they wanted to do. One of the projects was about a coffee shop and its place in a small town. The second was about how to stop bullying. • We found that doing the projects led some people with intellectual disabilities to become stronger self advocates. We also found that the projects raised important issues about their lives that other people had not thought of and that people began to work together in groups to do their own research and to make change happen. No Longer Researching About Us Without Us was an innovative national project which aimed to develop inclusive research with people with intellectual disabilities in the Republic of Ireland. This paper is my personal reflection as co-ordinator of this project on work undertaken by and with people with intellectual disabilities during its 18-month life. Using examples from the project, this paper explores links between the inclusive research aspect of project and the rights of people with intellectual disabilities to participate in their communities. As a result of the project we found that people with intellectual disabilities began to initiate and take action on some issues that were important to them and that this resulted in the development of longer term changes in their role within one service in Ireland. [ABSTRACT FROM AUTHOR]

Accessible summary • This paper describes how guidance about good practice for commissioning services for people with learning disabilities was developed in Scotland. • Helping people with learning disabilities to live in their own homes or in other homely settings has been a major shift in government policy and practice in the last 10 years in Scotland and in the rest of the UK. Commissioners from local authorities and from National Health Service services have the responsibility for organising good quality care, within a budget and within other constraints. Commissioners also have to develop professional relationships with organisations from the statutory, voluntary and private sectors, involved in commissioning. These are very demanding roles for commissioners. • Although commissioning is a complex process, the main goal and steps involved in achieving that goal are well understood: to get from the starting point of what the person with learning disabilities and commissioners ideally want, to the end point of good outcomes that can be sustained. The development of a set of suggested steps in this process and a number of key questions at each step are described in this paper. Commissioning has been defined as ‘The process of translating aspirations and need into timely and quality services’ ( CSCI 2006 ). This paper describes the development of some practical guidance for people involved in commissioning services for individuals with learning disabilities. A national conference was organised in November 2005 to look at the question of ‘What works in learning disability services?’, i.e. what approaches have proven effectiveness in the planning, commissioning and provision of services for people with learning disabilities. This was followed by four workshops around Scotland to seek practitioners’ views on commissioning, at a strategic and at an individual level. From this, written and online guidelines were devised, based on seven steps with a number of associated key questions. These guidelines aim to inform commissioners about available research and good practice, and provide a method of recording the basis on which commissioners make their decisions for models of care and their experiences in a way that could be shared with others. [ABSTRACT FROM AUTHOR]

Accessible summary • Intensive Interaction is a way of communicating sociably with people who have severe or profound learning disabilities and/or autism. • The writer of this paper thinks that some people may have different ideas why they do Intensive Interaction with people who have severe or profound learning disabilities and/or autism. • Some people use Intensive Interaction to communicate with and respond to people who have severe or profound learning disabilities and/or autism, in whichever way works best. • Other people use Intensive Interaction to help people who have severe or profound learning disabilities and/or autism to learn more ways to communicate and get on with other people around them. • The writer of this paper thinks that there should be more research into what people think about Intensive Interaction. Intensive Interaction is an empirically researched approach to developing fundamental communication and sociability for people with severe and profound learning disabilities and/or autism. However, it is the author’s contention that certain aspects of Intensive Interaction are not universally conceptualised in a uniform manner, and that there are two general process models that are used to describe the approach by an increasing number of multi-disciplinary practitioners and advocates. Firstly, there is a ‘Social Inclusion Process Model’ of Intensive Interaction, with practitioners using the approach with the primary aim of inclusively responding to the communication of a person with learning disability, however it is expressed. Secondly, there is a ‘Developmental Process Model’, with practitioners having identifiably educative or developmental goals, rather than the approach being viewed simply as a means of contemporaneous social inclusion. In an attempt to clarify this position, this paper makes the case for a ‘Dual Aspect Process Model’ of Intensive Interaction. [ABSTRACT FROM AUTHOR]

Accessible summary • This paper talks about a treatment group for men with learning disabilities who are at risk of sexual offending. • It looks at the four stages to sexual offending. • We looked at the experiences of some of the men who completed the group. • After the group the men accepted more responsibility for their behaviour and understood more about the effects on their victims. • More work needs to be done to help the men use their new skills and knowledge in their lives outside of the group. This paper reports on the process of helping offenders, and those at risk of offending, with mild learning disabilities, understand their steps to offending. The four-stage model of sexual offending provides a framework to enable participants and facilitators to understand the individuals’ offending, in particular the steps or stages that lead to it. This is one of the modules in a nationally provided group-based treatment programme. Four men completed the local programme and their progress during this module is reported. A number of themes arising from the work the men did in this module are also discussed. [ABSTRACT FROM AUTHOR]

Accessible summary • A lot of people worry about going to the dentist. • Sometimes people aren’t given a choice about the treatment they have at the dentist. • We worked with somebody to help them feel better about going to the dentist. • People can copy our work to help other people feel better going to the dentist. Dental anxiety is a common form of anxiety problem, and research suggests that more people with learning disabilities experience dental anxiety than in the general population. Very little work has been done to investigate effective non-medical approaches for supporting people with a learning disability and dental anxiety to access dental care. This has created a significant barrier to accessing treatment, and meant that individual’s are not offered a meaningful choice between treatment options. Using a case study, this paper demonstrates that a simple cognitive behavioural intervention can be effective in reducing dental anxiety, and offer a more meaningful choice of treatment options. This paper is limited in that no formal assessment measures were used, and was evaluated through client feedback. It is possible that this intervention could be applied by other practitioners to increase the accessibility of dental health services. [ABSTRACT FROM AUTHOR]

Accessible summary •We are people with and without learning disabilities doing research together. •In this paper we talk about the good bits and the bad bits of doing research together. In our paper we talk about what it is like to be a group of people with and without learning disabilities researching together. We describe the process of starting and maintaining the research group and reflect on the obstacles that we have come across, and the rewards such research has brought us. Lastly we put forward some ideas about the role of professionals in such a group that we hope people might find useful. [ABSTRACT FROM AUTHOR]

Accessible summary • This paper is about a workshop held by researchers from the University of Leeds. • The researchers looked at one area to see if people were doing things about health that the Government said they should in Valuing People. • The research found out that there is still a lot of work to do in the area to meet these targets. People came to a workshop to talk about this. They thought that: • Learning disability services should lead the way and draw up a plan about what needs to happen. • People who run health services should make sure they set targets for GPs and hospitals that fit in with the plan. • Government should make sure that the targets they set for GPs also fit in with Valuing People targets. • This research is important because it can show what helps health services improve for people with learning disabilities and what gets in the way. Research at the University of Leeds has evaluated how well changes to healthcare proposed in the Government White Paper Valuing People ( Department of Health 2001 ) were being implemented in one locality and their impact on people with learning disabilities. The project had a developmental aspect and incorporated two workshops over the course of the study to disseminate preliminary findings. These were used to help key stakeholders evaluate progress and to inform discussions about what should happen next in the fieldwork area. This paper discusses recommendations from the first research workshop at which preliminary findings from the study were presented. The workshop involved health and social care providers and managers, people with learning disabilities, voluntary and community organizations. It gives an overview of local issues relevant to the White Paper health targets and highlights those that need to be resolved before these targets can be achieved. These issues are likely to be replicated in other areas of England and Wales and have implications for leadership, strategy, the allocation of resources and structures of accountability in health and social care agencies. [ABSTRACT FROM AUTHOR]

The purpose of this paper is to introduce people working in the field of learning disabilities to the concept of 'protective behaviours' (PBs). It suggests that the PBs approach is relevant to people with learning disabilities, particularly in relation to issues of vulnerability and empowerment. The paper briefly overviews the basic features of the PBs approach and provides examples of its application in clinical settings. It concludes that the PBs process is of fundamental importance to services for people with learning disabilities and recommends that professionals would benefit from attending any training opportunities that may arise. [ABSTRACT FROM AUTHOR]

The article discusses various reports published within the issue, including an audit of adults with multiple learning disabilities by Deborah Gittins and Nikki Rose and another by Deborah Davys and Carol Haigh on a qualitative study of older parents of people with learning disabilities views concerning future accommodation needs.

An introduction is presented in which the editor discusses articles in the issue on topics concerning people with learning disabilities, including use of psychotropic medication to manage behaviours, active adult life as independent living, and disabled persons' emotional experience of bereavement.

Accessible summary When people report being sexually assaulted they can be examined by a specially trained doctor to see how the assault might have affected them. They may also ask for help from a counsellor or other specially trained support workers. These staff might belong to a sexual assault referral centre ( SARC)., This study reports findings from work that staff from St Mary's SARC in Manchester did so that they could improve the services they offer to people with learning disabilities who have been sexually assaulted., A staff survey showed that staff thought they might not always recognise if a person had learning disabilities or another learning difficulty like dyslexia. We wonder if knowing the difference is as important as knowing how to support people well. Looking at patient notes showed that patients with learning disabilities received less follow-up care than patients without learning disabilities., This study describes the first step that the SARC team took to improve their service. Improvements have been made based on these first findings, including some of those recommended by staff in their surveys. These will be reported in another paper to see if they have made a difference to people with learning disabilities., Abstract Background People with learning disabilities are more likely to experience sexual abuse and less likely to access support than the general population, this is due to a range of variables at the individual, societal and service-delivery level. This study presents a service evaluation of St Mary's Sexual Assault Referral Centre, Manchester to explore its ability to provide meaningful support to people with learning disabilities and to identify ways to improve its responses. Materials and Methods The service evaluation had two components: (i) A staff survey to elicit self-perception of the knowledge and skills required to meaningfully support people with learning disabilities who attended the centre following an allegation of rape or sexual assault (ii) An audit of patient notes to compare service delivered to patients with a learning disability to those without. Results Forty-two members of staff (over 75% response rate) completed the survey which found a lack of differentiation between learning disabilities and other types of neurodiversity. The majority of responders reported having enough knowledge about learning disabilities to do their job and feeling confident in their abilities. Nonetheless, all the staff reported that they would like more learning disability training. An audit of the patients' notes found people with learning disabilities accessed fewer follow-up care services than people without learning disabilities. Conclusions The results identify areas for staff training to improve meaningful support for people with learning disabilities alongside a note of caution against a focus on labelling. By introducing more accessible support a diverse group of people can benefit. [ABSTRACT FROM AUTHOR]

Accessible summary • This paper is about how people get good support. This can happen when you have a direct payment, and you have your own personal assistant (PA). But you need to have a good PA, who knows how to communicate well. • Two people with learning disabilities worked in the research team on this project. The team made videos of people with learning disabilities working with their PAs. • It is important that the PA knows how to support you well. For instance, they should treat you with respect. This means that you can tell them what to do. They should talk to you like an adult, and listen to what you want. They should not rush you. • A good PA will remind you that you’ve got a choice. They will help you be in control of your choices, but they won’t force you to make a choice. • PAs sometimes have to give you advice. But that should be on your terms. It’s good to have a friendly relationship with your PA. It’s a bit like team work. • People with learning disabilities can help to train their own PAs. This project made a training pack, with a DVD. For people with learning disabilities to have control over their lives, the quality of their support staff matters. This paper reports on an inclusive research study, which used video analysis to study the communication skills of personal assistants (PAs) who worked with people with learning disabilities. The findings reveal some of the fine detail in the strategies these PAs used, to show respect, support choices, and give advice. They were able to step back, to listen and observe the person with learning disabilities, and to use good, open body language. They also gave people time, built up a close relationship based on shared interests and activities, and they talked with people in a friendly, adult way. It is difficult to support people to manage their lives, and team work is important. People with learning disabilities also have to play their role in the relationship. This research produced training materials that will help people with learning disabilities to train and support their own PAs. [ABSTRACT FROM AUTHOR]

Accessible summary • People with intellectual disabilities sometimes have difficulty in saying what they need and what they want. • Finding out what a person is trying to say can be supported through the person using pictures, objects, electronic devices. • Within this model changes can be made to the place where the person lives and works so that the person can exercise more of his/her rights. • Using this model the person is treated with dignity and respect and supported to live the life he/she chooses to live. • This paper uses the story of Mary to show how this model works. This paper demonstrates the effectiveness of the multi-element behaviour support (MEBS) model in meeting the rights of persons with intellectual disabilities and behaviours that challenge. It does this through explicitly linking the multi-element model to the guiding principles of a human rights based approach (HRBA) using a vignette to demonstrate the link. The guiding principles of a HRBA are express link to rights, participation, empowerment, nondiscrimination and accountability. The background assessment and functional assessment phase of the MEBS process enables the identification of rights infringements while the MEBS plan addresses those rights. The accountability tool in the MEBS model, which is the periodic service review, is then used as a measure of implementation of the MEBS plan and consequently the enabling of rights. Implications in relation to the rights of those supporting persons in receipt of MEBS and those living with the person receiving MEBS are also highlighted: ‘In each situation we confront, a rights based approach requires us to ask: What is the content of the right? Who are the rights claim-holders? Who are the corresponding duty-bearers? Are claim holders and duty bearers able to claim their rights and fulfil them? If not how can we help them to do so? This is the heart of a human rights based approach.’ ( Robinson 2003:1 ) [ABSTRACT FROM AUTHOR]

Accessible summary • This paper talks about what a group of people with intellectual disabilities in Ireland had to say about their experiences of relationships and sexuality, and the type of support they might like in this area of their lives. • Many people did not get enough information about sexuality. There were lots of things they did not understand properly and they wanted more information. • Many people wanted to have boyfriend and girlfriend relationships, but relationships were not allowed in their service. Some people had to have relationships in secret. • In Ireland it is against the law to have a sexual relationship with a person who cannot live without support, or protect themselves from abuse, unless you are married. • The law needs to be changed because some people with intellectual disabilities who need support in their lives are still capable of having sexual relationships and protecting themselves from abuse. • People with intellectual disabilities need better sexual information and need support to have their voices heard by government. How to translate the right of people with intellectual disabilities to a full sexual and intimate life into proactive support remains a challenge for disabilities services in Ireland. Little formal research has been undertaken in this country into what people with intellectual disabilities think about these issues and what they would like to see happen in this area of their lives. This paper presents a preliminary analysis of the first author’s PhD research into the views and experiences of a small group of Irish people with intellectual disabilities in the area of sexuality and relationships. Initial findings suggest that people with intellectual disabilities are getting insufficient sex education and that changes are needed at a disabilities service level to ensure that people with intellectual disabilities can express their sexuality in an open and supportive climate. At a government level, changes will need to be made to Irish legislation concerning the sexuality of vulnerable adults so that this country is meeting its obligations under the UN Convention on the Rights of Persons with Disabilities (2006). The authors argue that people with intellectual disabilities’ views must come first in all debates concerning their sexuality. [ABSTRACT FROM AUTHOR]

Accessible summary • We have done research about cancer, death and dying. People with learning disabilities who had cancer were in our studies. This paper is about making sure that our research is ethical. This means that we don’t want to cause any harm (or make people upset) when we do the research. We ask: • How do we find people to be in our studies? • What should we do if people cannot understand the research they are in? • What should we do if people do not want us to use a made-up name in our writing? • What should we do if, during the research, we see that people with learning disabilities are not treated right? • What is the relationship with the researcher? Is the researcher a nurse, a helper or a friend? There has been increasing recognition of the fact that people with learning disabilities can and should be involved as active participants in research. However, in the area of cancer and palliative care, they continue to be protected and excluded from contributing to expanding our knowledge base and the shaping of care provision. This paper explores the issues involved in including people with learning disabilities as participants in research around cancer, death and dying. It stems from the authors’ own experience of conducting research around cancer and palliative care, where people with learning disabilities were the key informants. Methodological issues include the choice of methodology and problems around recruiting a sample. Ethical issues include informed consent, participants’ requests to forego anonymity, observation of sub-optimal care and issues around the boundaries between the roles of researcher and clinician. [ABSTRACT FROM AUTHOR]

Editorial. Introduces a series of articles about learning disabilities. Parenting of children with learning disabilities; Emotional disturbances in people with learning disabilities; Transition between school to adult life.

This paper describes the use of a new project, ‘from the inside looking out’ (FILO) (N. Richardson Unpublished data), to develop communication, interaction and emotional literacy skills with people with profound and multiple learning disabilities. The authors utilized tools derived from Intensive Interaction Therapy [D. Hewett & M. Nind (1994) Access to communication. London, David Fulton Publishers; D. Hewett & M. Nind (1998) Interaction in action: reflections on the use of Intensive Interaction. London, David Fulton Publishers] and applied these within a FILO paradigm to run an 8-week group with five participants where the aim was to build relationships and enhance awareness of emotional variables. The results were measured using both quantitative and qualitative analysis and it was found that a number of discreet observable behaviours related to interactive ability were positively changed across all participants. Important processes within the group are analysed and recommendations for expanding this approach in the future are discussed. [ABSTRACT FROM AUTHOR]

Securing meaningful involvement in service development and provision can be seen as a particular challenge for people with learning difficulties. The National Health Service & Community Care Act [(1990) HMSO, ISBN 0105419907] and more recently Valuing People [Department of Health (2001) Valuing people: a new strategy for learning disability for the 21st century, Cm5086] have stressed the importance of statutory providers working in partnership with people with learning difficulties, without giving any clear guidance on how to achieve this. This paper is written from the perspective of Speaking Up – a voluntary organisation that has developed the ‘Parliament’ model to give people with learning difficulties a strong collective voice. Through self-advocacy taking the leading role in shaping the way people with learning difficulties and statutory providers communicate, it is argued that the Parliament model enables people with learning difficulties to genuinely influence services. After considering the link between self-advocacy and user-involvement, this paper describes the Parliament as it has developed in Cambridgeshire and discusses whether what has been achieved represents a real increase in power for people with learning difficulties. It concludes with a short assessment of the potential for replicability of the Parliament as a model for other areas of the UK. Craig Dearden-Phillips is Chief Executive of Speaking Up and Rob Fountain a Project Leader with the organisation. [ABSTRACT FROM AUTHOR]

In this paper the small body of research which looks at how people labelled as having learning disabilities view this social identity is considered. The author argues that this research has implications for our assumptions about self-advocacy groups for people with learning disabilities. [ABSTRACT FROM AUTHOR]

•Researchers worked with people with learning disabilities to make guidance on how to make information easier. They looked at books and papers and talked to people who had worked at making information easier.• One of the most important things they found out was that everyone who makes information for people with learning disabilities should work with people with learning disabilities to do it.• Everyone needs to keep working to find better ways to make information easier. Information is important for people with learning disabilities to make changes that will make their lives better. This paper begins with a discussion of what we mean by easy information. It then describes the methods employed in a project to create guidance on making information easier for people with learning disabilities. Researchers and people with learning disabilities worked together to interview information providers about approaches they had used and to carry out a literature review. Draft guidance was written and tested with a range of groups and individuals. Key findings from the project were the necessity of a clear aim when planning information, the need to consider carefully the best format or media for sharing your message and most importantly, to work with your intended audience when creating information. The paper goes on to discuss the importance of making information appropriate for all sections of the community, including people from Black and minority ethnic groups. [ABSTRACT FROM AUTHOR]

•People with learning disabilities have lots to say. They know how to say things to people with learning disabilities.• People with learning disabilities can get many skills by making easy information. The paper describes how a group of self advocates wrote a book. It discusses each of the stages of writing and developing the book. It says why they wanted to write a book, what they thought about making information easier and how they chose the right words and pictures. It shows that people with learning disabilities can make easy information for other people with learning disabilities. It also shows how making the information helped the self advocates develop lots of skills and how proud it made them feel. The self advocates knew how important it was for people with learning disabilities to be involved in making‘easy information’. They said they knew how it felt to be in their situation. [ABSTRACT FROM AUTHOR]

In the past, it was rare for services for people with learning disabilities to focus on meeting the emotional and personal development needs of their clients, concentrating instead on interventions that aimed to improve self-care, develop appropriate social skills and reduce challenging behaviours. However, recent work using psychotherapeutic interventions and art therapies has started to remedy this traditional shortfall. The purpose of this paper is to discuss the successful use of an art-based therapy, using literature (often termed Biblio-therapy and Poetry Therapy in published research) that has been hitherto generally overlooked with a client group of men with learning disabilities who have offended, on account of their lack of literacy skills and likely lack of understanding of the use of metaphor. The paper describes the background to the work, the preparation of materials, the presentation of the psychotherapeutically-based group work and it's effectiveness in encouraging the development of emotional maturity and self-expression within a mixed-ability client group of young men in a high security setting. [ABSTRACT FROM AUTHOR]

This paper is about older people with learning disabilities who live in the country in Australia. We talked to both individuals and their carers to find out what things helped them they got older, and what things made it harder. These people said that they were well supported by the local community and particularly their doctors. However, many people in this project also reported problems about living in the country such as limited choices and being forced to make decisions they did not like. Access to support services in rural areas is known to be problematic both in Australia, and in other countries around the world, but the majority of research on the population of people ageing with learning disability has so far focussed on metropolitan residents. The authors report about select aspects of the lived experience of older adults with learning disability resident in rural locations in two states of Australia. This pilot project examined data drawn from 34 semi-structured interviews conducted with 17 older adults and 17 carers. Responses were analysed for thematic areas. It was observed that the capacity of certain rural areas to support meaningful choice-making was limited due to constraints of access to key services, including community-based aged care, generic and specialist health services, and both supported disability and aged-care residential options. Responses indicated that those living in both small- and medium-sized congregate care settings (such as group homes and residential aged-care facilities) had more limited choices and only partial (if any) control over their living situation. An understanding of the needs of older adults with learning disability resident in rural areas is important to ensure that both aged-care and disability support structures are built on individuals' needs. [ABSTRACT FROM AUTHOR]

It is important to be aware of hearing loss as it affects everyday life and gets worse with age in all adults. Many people with learning disabilities do not have their hearing checked, and families or carers often struggle to notice hearing problems. This study summarises previous research on hearing loss and old age for people with learning disabilities. Large numbers of older people with learning disabilities were found to have hearing problems, but smaller numbers were aware of this before testing. Everyone with learning disabilities should be aware of how important hearing is and have regular checks, especially before they reach old age. Hearing loss has a significant impact on living well and on communication in all adults, with the numbers affected increasing with age, and adults with learning disabilities being at particular risk. A review of the literature on hearing loss in older adults with learning disabilities was completed. A significant increase in hearing loss with increasing age in this group was demonstrated, at a greater level than in the general population. Prevalence rates have been the main focus of research, with few considerations of access to hearing assessment or benefits of rehabilitation such as hearing aids, or the effect that age has on living with hearing loss. With advances in audiology services and increased life expectancy of those with learning disabilities, further research would be valuable. In addition, all health and social care services should consider actively promoting hearing assessment and rehabilitation. Individuals, carers and families should also take action, not only when concerns around memory arise, but proactively for all. [ABSTRACT FROM AUTHOR]

Editorial. Introduces articles in the September 2002 issue of the 'British Journal of Learning Disabilities.' Inclusion of the self-advocacy activities of learning disabled individuals in england; Techniques for assessing the views of children with autistic spectrum disorders about their experiences of short-term care.

An introduction to the journal is presented in which the editor discusses an article on what is involved in being a good personal assistant for people with learning disabilities, the importance of caretaker support, and bereavement psychotherapy for learning disabled people.

Accessible summary • This article is about cooperation between Eygló Ebba Hreinsdóttir and Gudrun Stefánsdóttir in an inclusive life history research project. • The article is also about the time they spent together in an institution in Iceland, Gudrun as a staff member and Ebba as one who lived there for many years. • Ebba has good and bad memories from the institution. The bad memories are mostly connected to the label ′mentally retarded′ and memories of being lonely, isolated, angry and sad. • Ebba had mixed feelings about finding some good memories from the institution but through participating in a life history project, looking at old photos and writing this paper, she has found out it is important to remember the good times also. • The good memories from the institution are connected to events like friendship, looking after children, the Icelandic Independence day, Christmas, rewards for swimming and many other events. This article was first written as a presentation to the International Seminar held at the Open University in July 2008. It is based on cooperation between two women, Eygló Ebba Hreinsdóttir and Gudrun Stefansdottir, one who lived at an institution and another who worked there. Ebba moved to an institution in 1969 when she was 19 years old. Gudrun started to work at the same institution a few years later when she was 16 years old as a summer girl as we were called in those days. After Ebba moved from the institution, they did not have contact for many years, but since 2003 they have worked closely together on an inclusive life history project. They use life history materials to talk about their different experiences of spending time in an institution in Iceland in the 1970s. It is based on tape-recorded conversations between them and work in the Icelandic women’s history group which they both participated in for 3 years. They also used old photographs from the institution that helped them to recall their memories from the institution. The article has two main objectives. The first objective is to reflect on the research cooperation between Ebba and Gudrun; how it started and how it has influenced them. The second objective is to reflect on their different experiences from spending time in an institution in Iceland in the 1970s. [ABSTRACT FROM AUTHOR]

Accessible summary • We have studied absconding from the old long stay hospitals for people with learning disabilities. • We have looked at many old records about absconding and talked to those who ran away to find out why they chose to do so. • The evidence of the research we have gathered suggests that absconding was more of a problem for authorities than they admitted. This is important as it shows that people were not just passive victims of the long stay hospital system. The history of long stay hospitals for people with learning disabilities has revealed that residents had ways of resisting their incarceration (Mitchell D, Traustadottir R, Chapman R, Townson L, Ingham N and Ledger S (editors) (2006) Exploring experiences of advocacy by people with learning disabilities: testimonies of resistance). This paper explores one aspect of this resistance, ‘absconding’, as unauthorised leave from hospital was termed. It draws on institutional records and oral histories, from two hospitals in South-East England. It seeks to show why and how residents escaped, how institutions responded and how absconding was presented publicly. [ABSTRACT FROM AUTHOR]

Accessible summary • People with learning disabilities have more health needs than the general population, and those health needs are different and require more specialised services. There is evidence of poorer outcomes and less effective health interventions for people with learning disabilities in Scotland, and elsewhere. • Reducing health inequalities is currently a key priority for the Scottish Government and National Health Service (NHS) policy has encouraged patient involvement in healthcare planning and delivery. This article reports on an NHS initiative to involve people with learning disabilities as ‘expert patient’ reviewers in national review teams, looking at the quality of inpatient and community services for people with learning disabilities. All 15 Health Boards in Scotland were reviewed, using a set of quality indicators. Details of the planning and support arrangements are reported. The success of the initiative was evaluated. • This involvement of people with learning disabilities as reviewers of NHS services has tested traditional assumptions and challenged the power imbalance in patient-provider relationships. Recommendations are made for the future success of similar schemes. Reducing health inequalities is a key priority for the Scottish Government. Health authorities are expected to meet quality targets. The involvement of people with learning disabilities in health service review teams has been one of the initiatives used in by National Health Service Quality Improvement Scotland to empower patients and improve health services. This paper describes this initiative, how it was planned, and an evaluation by health staff, carers and people with learning disabilities. Recommendations are made to ensure the future success of this type of initiative in Scotland and elsewhere. This initiative was evaluated positively and tested traditional assumptions, challenging the power imbalance in patient-provider relationships. The theory and the practice of including people with learning disabilities as ‘expert patient’ reviewers are discussed. [ABSTRACT FROM AUTHOR]

Accessible summary • Students with intellectual disabilities can go to University. • This paper is about a course at Trinity College Dublin. • The researchers talked to students, families and teachers involved with the course. They asked them what they thought about the course. • They found out that the people with intellectual disabilities were more included. They felt better about themselves. They had more friends. • The researchers will give ideas for making University work for students with intellectual disabilities. The purpose of this study was to investigate the experiences of students with intellectual disabilities gaining access into a university setting, specifically Trinity College Dublin. The topic is important as gaining access to a university setting for students with intellectual disabilities is not commonplace. The study was qualitative in design and aimed to understand the phenomenon of inclusion by collecting multiple sources of peoples’ understanding of what was happening for the students with intellectual disabilities completing a 2-year certificate course entitled, Certificate in Contemporary Living. The perceptions of the students, family members and tutors were captured through focus groups, questionnaires, and use of Photovoice and document analysis. Triangulation of the multiple sources of data was used as well as open, axial and selective coding for thematic analysis. The student voice echoed by that of family members and tutors found that inclusion within a university setting led the students to see themselves more alike than different to their peers. They felt more accepted, more competent and more socially networked. Vital to the development of friendships was a mentoring programme. The aspect of the certificate programme that supported students to participate in a range of undergraduate classes will be described, and how this strategy is continuing to be researched will be outlined. Being included within a university setting opens up a whole new way of being for students who have previously experienced marginalisation. Such inclusion is a cogent way to promote ability. The safeguards to ensure that inclusion within university settings does not become another form of segregation will be touched upon. [ABSTRACT FROM AUTHOR]

This paper reports the findings of a study commissioned by the Scottish Executive which examined the introduction and implementation of local area co-ordination (LAC) in Scotland. A questionnaire about their posts was completed by 44 local area co-ordinators, interviews were conducted with 35 local area co-ordinators and 14 managers and case studies of LAC practice were carried out in four local authorities. The study found both strengths and weaknesses in the implementation of LAC nationally. There was great unevenness across Scotland in the number of local area co-ordinators employed by local authorities and in their roles and remits. Progress in community capacity building was slow overall and some managers expressed mixed feelings about LAC's usefulness in a climate of scarce resources. Individuals and families, however, were very appreciative of the support received and there was evidence that LAC had made a positive difference to their lives; for example, in relation to increased inclusion, choice and formal and informal supports. Various proposals are made for supporting the future development of LAC. [ABSTRACT FROM AUTHOR]

Accessible summary • Staff often influence people with learning disabilities when they talk to them and when they answer them. • For example, they might talk too quickly or they might use sentences that are too difficult. They might also miss what a person with learning disabilities is trying to say. • We think residential services should make video recordings of staff and people with learning disabilities talking to each other so they can see how this happens. • Videos could make staff better at offering choices and understanding what people think about things. • Making video recordings needs to be done carefully; staff and people with learning disabilities should be able to say they don’t want to be recorded. In this paper we argue that video recording of actual practice should be a central tool for organisations attempting to improve services for people with learning disabilities. Since an important site for the disempowerment of service-users is in everyday, mundane interactions with service staff, an approach to staff development is needed which allows workers to see what they actually do and how they might do it differently. Research illustrates that retrospective self-reports of what people habitually do cannot capture much of the important details of communicative interaction. We argue that video recordings are the best way of doing this, and provide examples from our own work of the type of benefits that can arise. Finally, we set out a set of guidelines for the use of video recording in reflective practice in services. [ABSTRACT FROM AUTHOR]

Accessible summary • This article is about people with a learning disability doing research with therapists. It is about how we are learning to do research together. • The research is trying to see if counselling and therapy helps people with a learning disability feel better. One way of doing this is to ask people questions about their feelings before and after counselling. • We want to have some questions about how it feels living with a learning disability. Our group is talking about this. They have made a list of what they have said. They plan to ask other people if they agree. • This research matters because people with learning disabilities are doing the research. They know what it is like living with a learning disability. They know what things that are important to them. They can help make a questionnaire that other people with learning disabilities will find easy to understand. The questionnaire should help people see how feelings can change over time. People with a learning disability, the experts of their own experience are increasingly involved in research. We will be discussing in this paper their centrality in the development of a psychological therapy outcome measure for people with learning disabilities. Their involvement needs to go beyond giving their views to being included in the whole research process. It is anticipated that such participatory research will help create a measurement tool that has greater meaning and validity for people with a learning disability. We are adapting clinical outcomes in routine evaluation – outcome measure (CORE-OM) Evans et al. (2000, J Ment Health, 9, 247) , the dominant psychotherapy outcome measure in routine use in the UK, for this purpose. However the existing four domains of CORE-OM (well being, problems/symptoms, functioning and risk) do not address some of the issues and feelings that impact on the lives of people with a learning disability. This we call the ‘missing domain’ and it is the focus of this present research. Within the Collaborative Research Group (CoRG) we are seeking to uncover the essential elements of this missing domain and convert them into items for a new domain. This article examines some of the issues involved in the complex interrelationship between the process of research and the outcome of research. [ABSTRACT FROM AUTHOR]

Accessible summary • Sometimes people are worried about saying things to staff even if they are usually good at talking. • Sometimes they think if they say something then someone might blame them. • It can help to use picture symbols to help you say what you want. • Symbols help you remember what you have said because the pictures are there in front of you. • This article tells you how these picture symbols in Talking Mats work. • It also tells you how one woman was helped to say what she wanted. This article presents the case of a woman with mild learning disability and with good verbal and expressive language ability. However, she was unable to explore verbally with her clinical psychologist issues concerning her low mood and to discuss strategies to address this. Talking Mats provided a low-tech communication framework to help the woman think about the issues and express her views. This article explores this approach and the woman’s response and considers the advantages of using Talking Mats in such cases. [ABSTRACT FROM AUTHOR]

Accessible summary What we did: We made a picture book about cancer for people with learning disabilities. The book explains about cancer. It also explains about the treatments for cancer. We wanted to find out if the book is useful for people with learning disabilities. We met five people with learning disabilities who wanted to find out about cancer. Most of these people had a mum or dad who died of cancer. We watched them when they read the cancer book. We talked to them after they read the cancer book. We also met their supporter. They were professionals. What we found out: • The doctors didn't tell people with learning disabilities about cancer. The supporters had to do it. Sometimes the supporters decided not to tell the person with learning disabilities about cancer. • The supporters found it difficult to talk about cancer and dying. They didn't know enough about cancer themselves. What we want to say to everyone now: It is important that people with learning disabilities are told about cancer. But the supporters need to be helped too. Learning disability staff and cancer staff need to work together. Learning disability staff need training to be health facilitators. Together they can help people with learning disabilities to find out about cancer. This paper reports on one of the findings of a small study that aimed to explore how people with learning disabilities accessed and were supported to use a pictorial cancer information book. Five people with learning disabilities who were affected by cancer and their paid carers participated in the study. Support staff in the study were the people who provided cancer information for people with learning disabilities. They struggled with this task, particularly when the person needed information about cancer that exceeded the staff's own knowledge and experience. Most were also inexperienced in dealing with the emotions around cancer. There was little evidence that the support staff received any support themselves, either from cancer professionals or from within their own organizations. The authors conclude that although the findings of this study are based on a small number of people, collaboration is required between health and learning disability services. Further more, in aid of collaboration, staff in learning disability services require education programmes to enhance their skills in facilitating the health needs of people with learning disabilities. [ABSTRACT FROM AUTHOR]

The appropriateness and justification of physical restraint procedures in secure learning disability settings is an emotive issue. This paper examines the views of service users ( n = 10) from secure residential facilities who are restrained frequently. Using a semi-structured interview schedule, Service users were interviewed about their restraint experiences. They reported that restraint can lead to potentially abusive situations and that staff should try other approaches before restraining someone. They were divided on whether it calmed them down and whether staff enjoyed performing restraint. Other comments included that restraint may or may not serve a purposeful goal and that there is a definite need for staff training for those involved in performing restraint. [ABSTRACT FROM AUTHOR]

Comments on a paper in the 'British Journal of Learning Disabilities' about the problem of not knowing who or where the majority of people with learning disabilities are. Percentage of the population who have a learning disability; Proposals for learning disability services nationally.

The article introduces various reports published within the issue including one by Andrew Holman on Professor Frank Clark, and his role in providing and shaping palliative care services and another by Diane Willis and colleagues on the provision of care for people with learning disabilities affected by cancer.

Accessible summary • This article is about Emma's experience of living with learning difficulties. • Emma expresses a lot of anger, and talks about feelings of loss. • This article is interesting to people with learning disabilities because they can see if their experience is like Emma's in any way. This paper presents Emma's story: her experience of living with learning difficulties. The emerging themes of loss, blame and anger are discussed. [ABSTRACT FROM AUTHOR]

The purpose of this paper is to present a model of practice termed ‘Network Training’ which describes a structured approach to working with the network of support around an individual with learning disabilities. Within learning disability services there are many contexts in which the support system has opportunities to come together. For example, care management review meetings; person centred planning meetings and a multitude of clinical and service forums. However, each would have its own purpose and agenda ultimately impacting on the extent to which people within to system can contribute to resolving issues pertinent to the person with learning disabilities. We describe a model of practice we have developed over several years. Systemic theory has influenced the way in which we practice. Using a case example, a model of the Network Training process is outlined. Reference is made to the role of the facilitator and the authors’ clinical experiences of using this approach. Issues of evaluation are also discussed. [ABSTRACT FROM AUTHOR]

This paper describes the findings of a survey into prescribing of psychotropic medication with adults with learning disabilities in a British city. A self-completion questionnaire was sent to staff in dispersed housing and community learning disability teams to gather information about the number of people prescribed psychoactive medication, the type of medication prescribed, General Practitioner and Consultant Psychiatrist visits. The survey identified 55 people who were prescribed psychotropic medication. Of these, 89% were prescribed antipsychotic medication, whilst 47% were prescribed antidepressants. Forty-four per cent were prescribed more than one category of psychotropic medication, whilst 22% were prescribed more than one antipsychotic medication. Worryingly, a clear diagnosis was not provided in a large proportion of cases. The survey has informed a number of service developments, which are briefly described. [ABSTRACT FROM AUTHOR]