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Background: Related to the target group of young children with a significant cognitive and motor developmental delay, the aims of this study were to obtain more insight into (the interrelations between) several characteristics of these children's expressive communicative behaviour and to explore associations between child behaviour, partner behaviour and contextual factors. Methods: A coding scheme was specifically developed and used to code observational data of 38 children. Three different communication‐eliciting situations were video recorded. Potential communicative acts were detected, described, coded and counted within various coding categories. Data analysis mainly involved chi‐square tests in combination with Cramer's V and Friedman's two‐way analysis of variance by ranks. Findings: Potential communicative acts of young children with significant cognitive and motor developmental delay can be described in terms of focus, used modalities, level of initiative, communication complexity, signs of functionality and signs of emerging intentionality. The communicative focus of the children is mostly elicited by the prompt given by the communication partner and relates to certain behavioural modalities. Specific scaffolding behaviours of the partner are associated with the communication complexity of the children. Conclusion: This study provides some concrete suggestions on how to organise the interaction with these children. Accessible summary: This paper is about young children with significant cognitive and motor developmental delays.The communication behaviours of this group seem all to alike.We took a closer look at these children's communication behaviours and how these relate to what other people do and the context of their interactions.We found that if you describe these children's low‐level communication behaviours in great detail, interesting differences can be seen, and other people can help the children to focus on specific objects or to shift attention from an object to person they are interacting with. [ABSTRACT FROM AUTHOR]

This special issue of the "British Journal of Learning Disabilities" is dedicated to people with the label of learning difficulties. In the context of British Disability Studies, a number of observers have suggested that people with learning difficulties remain marginalized by writings associated with a social model of disability. The British engagement with the social model, with its roots in organizations of disabled people with physical and sensory impairments, has often created a view of learning difficulties as an unproblematic biological impairment.

Accessible summary • Using drama in research means people who communicate in different ways can take part in research. Drama was used to find out what students do in school PE and their free-time. • Students from a special school agreed to take part in the drama session. Two drama workers ran the session. • A video recorder was used to help remember what happened during the drama session. • A report was written about the drama session and presentations made to people working in schools, social services and sport. In this paper I continue to develop the growing interest in working with research approaches that enable people experiencing severe learning disabilities to participate in research activities. In particular, I discuss a research project that adopted a number of data generation strategies, including a drama pilot project. In this paper I focus on the drama pilot project by reviewing the processes involved in working with drama as a research approach. In reflecting upon the use of drama I explore a number of issues concerning the process of transcription and the competing discourses of research and engaging in a creative performance. Although I identify a number of challenges encountered in this drama pilot I would argue that this technique remains a worthwhile and relevant strategy for engaging with many students, including those experiencing severe learning disabilities. [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 •Many people with learning disabilities have pain that never goes away. This is called chronic pain. •Lots of work has been done on chronic pain for people without learning disabilities, but not much is known about how to help people who have learning disabilities and chronic pain. •This paper looked at what helped people without learning disabilities to live with chronic pain and adapted it to be used for people with learning disabilities and chronic pain. •This paper found that it helped one woman and so it describes what was done so other people can use the same ideas in the future. Chronic pain is a prevalent, under-diagnosed problem in the learning disability population. This is in part due to communication problems, unrecognized pain behaviours and the effects of medication. As a consequence, chronic pain often goes untreated and causes ongoing distress. This paper initially describes the main research that has been carried out into learning disabilities and chronic pain management and then goes on to detail the case of a 32-year-old woman with mild–moderate learning disabilities who has been suffering from chronic pain for 16 months. A multi-modal and multidisciplinary assessment was carried out to explore the physical and psychological underpinnings of her pain and its impact on her quality of life. A cognitive-behavioural pain management intervention was developed by adapting a manual for non-learning disabled adults to meet the physical, social and cognitive needs of the client. Sessions were carried out once a week for 4 months and improvements were reported in the level of pain intensity, levels of anxiety and depression and the range of activities she took part in. [ABSTRACT FROM AUTHOR]

This paper is about my job as a research supporter. I was part of a team, with three people with learning difficulties. They had paid jobs as researchers. The project was at a People First organisation, and it was about direct payments.These are the things I tried to do in my job:It is not always easy to do these things. The supporter needs to learn how to step back, and find ways for researchers with learning difficulties to do things for themselves.It is important that people with learning difficulties know how powerful they can be when they are doing research.People First organisations need to decide for themselves about the research they may want to do.Thank you to CHANGE for the use of pictures from their PictureBank. In a previous article [Brit J Learn Disabil27: 48–51], entitled‘Researching Together’, I described the process by which a team of People First researchers and myself worked together on a small-scale project in Bristol. The project was started by self advocates, and followed their own ideas, although they had support. Walmsley refers to it [Disabil Soc16: 198] as a‘team approach, rather than one where the people with learning disabilities are in charge’, admitting that the title‘Researching Together’ led her to this conclusion. My basic aim in writing this sequel, then, is to consider the notion of‘together’. Is the equation of togetherness about equal roles, or does it automatically imply that one partner is more powerful than the others? This is a practice paper, which offers some analysis of our own experiences in a large-scale, funded research project, in which the self advocates had paid employment as researchers. All members of the team can contribute to this kind of reflexivity. The article concludes that inclusive research is something new, with its own hallmarks and styles. The research supporter has to remain aware of the potential power in her own role, and to be prepared to divest herself of that power and to step back, so that People First members take control of the process of research. [ABSTRACT FROM AUTHOR]

This paper explores the use of disposable cameras and Talking Mats as research tools to access the views of young people with learning disabilities about their social activities. A pilot study was carried out with nine 16-year-old young people in a special school. They were given a single-use motorized camera. This was used to record the out-of-school activities they participated in, both in the home and community, for 1 week. The young people were asked to sort their photographs using Talking Mats symbols. This was followed by parental interviews to check for validity and reliability. The paper reports on the potential use of photography and Talking Mats as research tools with young people with learning disabilities, and how their use may break down some of the language barriers inherent in traditional interview methods. The author discusses some of the practical and methodological issues arising from the study. [ABSTRACT FROM AUTHOR]

Accessible summary • As people get older, many are not able to move as quickly as they used to and many find it harder to think about how to sort their problems. • Sometimes people develop what is called dementia. If someone has dementia then you may notice changes in their memory or how they behave. • There are a few kinds of dementia – one is called Alzheimer’s dementia; another is called vascular dementia; another is called Lewy Body dementia. • If people have these illnesses they find that gradually they are not as able to do the things they used to. They may forget more things like people’s names or how to make their tea. • There are other illnesses that can look a bit like these dementia illnesses and sometimes it is hard to tell if someone has a dementia illness or if they have some other illness instead of or as well as the dementia. • Many of these illnesses can be helped with medicine or with the right sort of support so it is important to sort out just what it is that is making the problem for the person. • If someone really does have a dementia illness then staff members need to know this so they can help the person. Sometimes this means moving into a different house or having different staff members who understand the difficulties. • Sometimes it is hard to find the right place for a person to live. This is because if they have dementia, then as they get older they may need more and more help. • The man in this paper was not able to speak to people but the writer used something called Talking Mats. When there is an important time in their life when they have to choose what they would like to do, Talking Mats is a way to find what a person wants without them speaking, by using pictures. Assessment for a diagnosis of dementia is hard enough under the best possible conditions. There are possible alternative or concomitant diagnoses, such as depression, to consider. However, when the possible dementia concerns a gentleman with severe learning disabilities and with a severe communication disorder then this assessment becomes even more difficult. Still more complications may arise from practical pressures such as general changes in health and hence of support needs; changes in support staff; what housing options are available at the time; and what options are or may be available in anticipation of future needs. This brief case-study highlights the difficulties and competing pressures that complicate further just such a differential diagnosis. [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]

Accessible summary • Listening to what young people with severe learning disabilities have to say about inclusion is important. • Researchers must be prepared to use a range of resources to facilitate communication. • Resources must be appropriate and familiar to the individual. This paper describes the evaluation of a drama production which involved 6 young people with profound and complex learning needs and 23 pupils from a mainstream school. The young people worked together on the project for nearly 2 years. At the end of the project we wanted to find out what the young people with disabilities thought of the inclusion project. Very often, the thoughts of young people with learning disabilities are not included because professionals do not have the resources or experience to conduct the interviews. This paper explains how the interviews were arranged, what tools were used and finishes with two case studies which are examples of what the young people thought. This research demonstrates that young people with severe learning disabilities have important messages to tell us about their experiences of inclusion. This paper gives examples of how we can enable young people with severe learning disabilities to express their views. [ABSTRACT FROM AUTHOR]

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]

Although it has been suggested that about 2.5% of the population as a whole should be regarded as having a mild-to-moderate learning disability, only about 0.25% of the population is registered as having a learning disability. This paper considers why this disparity exists. It is suggested that although 2.5% of the population may be a good estimate for people with IQs less than 70, a better estimate of the proportion of the population who reach a dual criteria of having both a low IQ and social/skill defects is about 1%. It is pointed out that even if true prevalence rate of learning disability is nearer to 1% rather than 2.5%, services still only know of a small proportion of people who could be considered to have a learning disability, and there are probably a large number of people with unidentified learning disabilities. It is also noted that the term ‘learning disability’ can be very confusing as it is not clear if it refers to people who have IQs below 70, people with both intellectual and adaptive disabilities or people who have been given a learning disability label. The implications of this for services and research are discussed. [ABSTRACT FROM AUTHOR]

Accessible summary • Many people with learning disability have poor health, compared with other people. • Each person taking part in this study told their health story and set themselves health targets. • Some of the things they learnt were: what to do when they are in pain; how to make appointments with the doctor; and how to make their needs clear when they are in the doctor’s surgery. • This research is important in helping people feel more confident when they visit their doctor, and in making it more likely that they are able to stay healthy. • The health of people with learning disabilities is poor when compared with the general population but this difference is not reflected in higher rates of access to primary healthcare. • This paper will report on a study undertaken to run and evaluate a 12-week programme to enable people with learning disabilities to better access primary healthcare. • The importance of this research lies in the successful outcomes achieved, and in the distinctive properties of the programme, which used practice-based groups, and focussed on the development of health skills as well as health knowledge. [ABSTRACT FROM AUTHOR]

Accessible summary Leaving school can be difficult for many young people with learning disabilities. We wanted to know how teachers and support workers work together to make leaving school easier for young people with learning disabilities. Also, what do teachers think should be the next step for young people? Many young people want a job but when we asked teachers and support workers they said most people go to college and do not get a job. We asked teachers why this happens. The paper reports the findings of a study of professionals in strategic and operational positions who were involved in transition planning for young people with learning disabilities. Respondents were asked to comment on what they regarded as the optimal aim and outcome of transition from school to post-school placements. The results illustrate the problems and advantages of inter-agency partnerships in delivering meaningful post-school destinations for young people leaving school. [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 • Many parents with learning with learning disabilities have their children taken away. • Advocates help parents with learning disabilities understand what is happening and to get their voice heard. • Advocates should know how to work with people with learning disabilities and know about the child protection system. The child protection system happens when others think that parents aren’t looking after their children well enough. Parents with learning disabilities frequently become involved with child protection and judicial proceedings. Parents report not understanding and being disempowered by the child protection system. This paper presents fourteen parents’ views regarding how two specialist advocacy services supported them during child protection. The parents believed that they were treated with more respect by child protection professionals when their advocate was with them. They reported being able to understand the child protection process and have their voice heard. The parents also praised their advocates for the emotional support they provided them and the way in which they were able to challenge child protection professionals’ practice because of their advocates’ experience in child protection. The advocates were supporting parents according to the guidance regarding supporting parents involved in child protection. They used strategies common to advocates working with adults with learning disabilities. The development of specific advocacy services supporting parents with learning disabilities should be supported. [ABSTRACT FROM AUTHOR]

The White Paper ‘Valuing People’ [ Department of Health (DoH) (2001) Valuing people: a new strategy for learning disability for the 21st century, London, HMSO] indicates that people with a learning disability need to become more actively involved in the decisions that affect their lives. This includes being offered active choices in access to health services. Psychologists, therefore, need to think about how to give people with learning disabilities enough relevant information in an accessible way to promote informed consent to treatment. This study investigates how much information adults with mild and moderate learning disabilities understand about psychology services, before and after watching a video designed to explain what seeing a psychologist entails. The video was shown to 19 participants at a local Social Education Centre. Participants’ knowledge increased significantly after watching the video. They were able to answer questions about its content better when asked after short sections of the video when presented, rather than after an uninterrupted presentation. [ABSTRACT FROM AUTHOR]

This paper presents the stories of three mothers with learning difficulties whose children have been involved in care proceedings. Drawing on the example of the legendary interviewer, Studs Terkel, the authors let the mothers describe their experiences of the child protection system in their own words. From out of their intensely personal accounts comes a political narrative about the role of the state in the policing of marginalized and vulnerable families. [ABSTRACT FROM AUTHOR]

The need for specialized treatment programmes to address the specific requirements of different populations has been well recognized. One important area of treatment development has been for offenders who are unsuitable for existing mainstream treatment programmes. This paper describes the process of adapting an existing sexual offender treatment programme for use with sexual offenders who have special needs in an Australian correctional setting. The population comprised individuals with a variety of special needs including borderline or mild intellectual functioning, severe literacy problems, significant communication difficulties, and other important deficits and special needs. It should be noted that some of these special needs individuals would not meet the diagnostic criteria for intellectual disability and this programme is aimed at the broader group inclusive of a number of special needs. Therapeutic adaptations have been guided by current research and practice, and specific examples are described and discussed. The authors believe that these adaptations may also have some utility for mainstream sexual offender treatment programmes. Research into the efficacy of these treatment adaptations with this population is currently underway. [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]

Studies have indicated that people with learning disabilities have few friends. Making friends requires both opportunities and skills. This paper focuses on the development of skills in order to facilitate friendship; an area that has received limited attention in the literature. Traditional social skills approaches are considered briefly, before moving on to discuss peer-mediated approaches. Peer-mediated approaches appear promising, with positive changes in the social behaviour of children with disabilities reported. It appears few studies have directly investigated maintenance, and evidence of generalization is limited. Factors that may improve generalization and maintenance are discussed. Finally, consideration is given to whether peer-mediated approaches actually facilitate friendship, rather than simply increasing interaction. [ABSTRACT FROM AUTHOR]

The paper reports on the development and piloting of the Social Inclusion Interview Schedule (SIIS). This uses pictures to explore social networks and feelings of social inclusion. The background, conceptual framework and development of the interview schedule are discussed and interim findings are highlighted. The challenge of not just identifying the constituents of a social network but also attributing some measure of intensity to the relationships and activities identified will be considered. The study site is Bradford in the UK and the study population are young people with learning disabilities and their carers. There is a specific focus on people from the South Asian community resident in the city. [ABSTRACT FROM AUTHOR]

People with learning disabilities who are unable to speak are often excluded from research. Techniques to support interviewing, such as Talking Mats, can help to improve the quality of research in which such people could not otherwise participate. Talking Mats, in common with many techniques which augment communication, relies on someone else selecting the vocabulary to be made available. This paper outlines the Talking Mats framework, and discusses various methods of vocabulary selection. In particular it reports on empirical work with two effective communication aid users, who were invited to advise on vocabulary. It is proposed that many of the difficulties of research involving people with limited communication, can be ameliorated by viewing the process of accessing their views not as a one off event, but as an ongoing process. [ABSTRACT FROM AUTHOR]

Although predisposing and facilitating factors for delirium are common in learning disabled patients, little is known about the occurrence of delirium in these patients. This paper presents three case reports and results of a manual and computer (Medline, Embase Psychiatry) search. In the literature only two case reports of delirium in learning disabled patients were found. These data were added to those of our three cases. The respective age of the patients was 16, 17, 51, 55 and 78 years. Delirium was associated with eye surgery, anticholinergic overdose, urinary infection, Alzheimer's disease and pulmonary infection, respectively. All patients had predisposing factors for delirium. The literature on delirium in learning disability is scarce. A reason for this may be that the diagnosis is often missed. Delirium is very distressing and raises morbidity and mortality. However, it is treatable, so more attention should be given to diagnosis and treatment, especially in these vulnerable patients. A practice guideline for the assessment and treatment of delirium in learning disability is given. [ABSTRACT FROM AUTHOR]

This paper overviews the phenomena of social stories in conveying social messages to children with autistic spectrum disorder and learning disabilities. The use of social stories in a clinical psychology service for children with predominantly severe learning disabilities is discussed. A case study is presented describing the use of a social story as part of a conventional behavioural intervention on a boy presenting problems surrounding sleep behaviours. [ABSTRACT FROM AUTHOR]

Learning disability nursing has had an interesting history over recent decades. Despite many predictions of it being replaced it has survived to engage in a variety of roles in contemporary learning disability services. This paper acknowledges the anomalous position of the profession and discusses its current position within nursing, and within learning disability services. [ABSTRACT FROM AUTHOR]

In this paper, the role of the nondisabled researcher who supports inclusive research in learning disability is explored. The author argues for more transparency about the role in order to highlight the challenges of working inclusively on research projects, the real contribution of people with learning difficulties to research, and the training/support implications of working inclusively. [ABSTRACT FROM AUTHOR]

This paper outlines the development of the sociocultural study of people with an intellectual disability, focusing in particular on the pioneering work of Robert Edgerton, Robert Bogdan and Steven Taylor, David Goode and John Gleason. As part of this analysis, I shall critically assess the contributions and limitations of these authors. I argue that the parameters of the debate have tended to become too rigid. The sociocultural study of intellectual disability has mostly focused on the experiences of people with mild intellectual disabilities, extrapolating from these experiences conclusions about the nature of intellectual disability in general, while the experiences and life worlds of those whose impairments are severe, profound, and often multiple, are often ignored. However, the portrayal and analysis of such people's lives are essential for our greater understanding and appreciation of intellectual disability, and of human difference in all its diverse manifestations. It is also essential for understanding, accepting and respecting people with severe and profound intellectual disabilities, and recognizing that such people are already living socially meaningfully lives as they are, despite not conforming to the dominant and socially prescribed norms and expectations of meaningful action and behaviour. The methodological and theoretical tools that are required to engage with and interpret such lives, however, are profoundly different to those used by the majority of sociocultural theorists in the field, as shall be discussed below. [ABSTRACT FROM AUTHOR]

A wide range of prevalence rates of psychiatric disorders in people with learning disabilities has been reported, and as yet, there appears to be no general consensus on how to improve the process of diagnosis in order to achieve better agreement. Distinguishing behavioural disturbance from psychiatric disorders is clearly problematic, and empirical and conceptual issues concerning the nature of these disorders brings into question the validity and reliability of psychiatric diagnosis in people with learning disabilities. Concern has been widely expressed about the high frequency with which psychotropic medication is prescribed to this client group. The present paper reviews some of the recent literature, and questions whether psychiatric diagnosis and the use of psychotropic medication are sufficiently evidence-based to be justified practice. [ABSTRACT FROM AUTHOR]

Accessible summary • This study looked at where parents think people who have a learning disability may live when parents are not able to give support at home. • The study showed that parents were not satisfied with services and that they worry about the future and getting older. • Parents feel that supporting a son or daughter who has a learning disability is a difficult job but they want to give support for as long as possible. • Parents are worried about what the brothers and sisters of people with a learning disability may have to do in the future. This study is important to people who have a learning disability because parents will not always be here to help. [ABSTRACT FROM AUTHOR]

Accessible summary • This article is about the feelings of powerlessness that professionals feel to cure learning disability and to answer questions such as ‘why do I have a learning disability?’ • We describe how Emma showed us through role play what it was like to have learning difficulties. •This article is interesting to people with learning disabilities because they can see how professionals struggle to understand what it is really like to have learning difficulties. The theme of powerlessness is relevant to learning disability because learning disability happens to people who do not choose and do not want to be learning disabled. Additionally, although there are many ways in which professionals can make the experience of living with a learning disability easier, we are powerless to cure learning disability, or answer the question asked by one of our clients (Emma) ‘why me? (and not you)’. [ABSTRACT FROM AUTHOR]

Accessible Summary •Many people with learning difficulties want to tell the stories of their life and have done so in collaboration with academic researchers. • Life histories of people with learning difficulties are a good way to learn about self-advocacy. Life histories can tell us about how self-advocacy began and the support people need to be self-advocates. • Tom Allen lived in institutions for 60 years. His life history describes how he could speak up about his wishes, the people who helped him speak up and how he was able to move out of the institution. [ABSTRACT FROM AUTHOR]

Capacity to consent is an important concept when working with people with learning disabilities. The current concept of consent is based on a dichotomous categorization: people either have or do not have capacity to consent. Several research studies have focused on the assessment of capacity to consent and these studies report a range from 0 to 65% of people with learning disabilities identified as having capacity to consent. Findings from these studies reflect several limitations with the current concept of consent. A recontextualization is needed in order to address these limitations. This should include the concept of risk and benefit assessment, i.e. the seriousness of the consequences involved determines the level of capacity needed for a specific decision. Moreover, the emergence of participatory research paradigms in the field of learning disabilities further challenges the validity of such concepts of consent. Therefore, it is proposed that it is more helpful to present the concept of capacity to consent within a broader contextual framework rather than as a unitary dichotomous categorization. [ABSTRACT FROM AUTHOR]

Accessible summary Older people with learning disabilities who develop memory problems are likely to feel sad., There is much information showing how people with learning disabilities can learn new behaviours which help them to think differently and feel better., This is the story of how I helped one older man with learning disabilities and memory problems to change how he was behaving and feel happier., Abstract Background: There is a considerable body of evidence to suggest that behavioural activation for depression is an equally effective but less complex treatment than cognitive behavioural therapy. It may therefore be more suitable for those who are cognitively impaired (i.e. early-stage dementia or mild cognitive impairment) or have a learning disability. Materials and Methods: A case study is presented that outlines how a behavioural approach was used to support an older adult with a learning disability and mild cognitive impairment who was depressed. It was delivered by the carer liaison practitioner employed by a memory service. Results: The client's score on the GDS- LD reduced from 23 to 5 and on the GAS- ID from 19 to 11 indicating a clinically significant improvement in his symptoms of depression and anxiety at post-treatment. Mood ratings on the Ottawa Mood Scales rose from 2/10 to 7/10. Increased engagement in activities and an improvement in the client's problem-solving abilities were evident. Conclusions: The case study demonstrates the clinical utility of behavioural activation as a treatment for depression in an older adult with a learning disability and mild cognitive impairment. This matches the findings of other studies of behavioural activation as an intervention to treat depression in older adults. However, the client did not have a formal diagnosis of learning disability and may therefore be atypical. More comprehensive studies, including randomised controlled trials, are needed to confirm these findings and more thoroughly test the effectiveness of behavioural interventions with this client group. [ABSTRACT FROM AUTHOR]

Accessible summary • This article is about sex offender treatment programmes in prison. • It compares the experience of sex offenders with and without a learning disability through the experience of a man who has been called Sam. • It is much harder for an offender with learning disability to finish the programme. • Different types of learning disability need different approaches. • It will be much harder for an offender with learning disabilities to be released from prison because of changes in sentencing. This article discusses some of the clinical and practical issues in relation to sex offender treatment in prisons and compares, through the experience of one offender who has been called Sam, how the experiences may differ between offenders with and without learning disabilities. It gives a brief overview of how programmes have developed in prisons and describes differences between the Sex Offender Treatment Programme and the Adapted Programme. It highlights how offenders with learning disabilities are severely disadvantaged by the programmes and how current sentencing practice will discriminate against this group in terms of not being able to demonstrate reduction of risk, resulting in offenders with learning disability remaining in prison for ever extending periods. [ABSTRACT FROM AUTHOR]

Accessible summary • Disabled children and their carers were asked what it was like to stay in hospital. • They said they felt worried and the hospital was not always ready for them. • They also said it was helpful if the child’s carer could be there during a hospital stay and it is better when the child has their own room. • This research will help hospital make changes to make staying in hospital as positive as possible. Government policy is that people with learning disabilities should have their healthcare needs met by mainstream services. This study interviewed the carers of 13 children with learning disabilities admitted to hospital for a period longer than 24 h. Nursing staff and two children were also interviewed. Five themes were identified as having a significant impact: (i) child, carer and staff anxiety, (ii) preparedness for the admission, (iii) difficulties managing the child’s behaviour, (iv) carer presence during the admission and (v) ward environment. This study presents edited responses from children, their carers and ward staff and identifies areas for service improvement. These include an emphasis on the value of emotional support, ensuring staff are prepared for hospital admission, agreeing strategies for supporting the child’s behaviour, clarifying carers and staff roles during an admission, ensuring the child has an individual room if required. Study limitations are discussed and directions for future research recommended. [ABSTRACT FROM AUTHOR]

Accessible summary We wanted to find out about a training programme for staff working in learning disability services. This training was carried out by people with a learning disability and was about their needs for choice, rights and respect. We also wanted to find out about the training they had to become trainers. • Seven people with a learning disability were asked to become trainers to staff. • This article will tell you how the trainers were trained and what they thought about it. • One hundred and nineteen staff who attended the training were asked what they thought about it. Staff said they found it very useful because the trainers themselves had a learning disability. • We also asked the trainers what they thought about being a trainer and they told us they have all learnt new skills. • We want to tell people about the importance of training like this so that more people with a learning disability are helped to become trainers, and because staff and the public can learn a lot from them. This article presents the findings of an independent evaluation of a pilot project in Northern Ireland called ‘Telling it like it is!’ (TILII) conducted over a 2 year timeframe (2005–2007). Seven people with a learning disability were recruited and trained as TILII trainers. With the help of a project facilitator, they designed and presented a values based training programme for staff working in learning disability services. For the purposes of this evaluation, 12 training sessions were evaluated by 119 course recipients who completed feedback forms at the end of the training session they attended. Comments were documented qualitatively and responses were thematically categorised. In addition, semi-structured interviews were conducted with the TILII trainers. Eight course participants also participated in semi-structured interviews. Findings clearly demonstrate that the trainer role has had a positive impact on the trainers; empowering them to become self-advocates and increasing their confidence and interpersonal skills. Course recipients reported that the training was an effective tool for gaining a better understanding of people with learning disability’s perspective of their own needs and wishes, and highlighted the values that staff should demonstrate in their work. Additional follow-up evaluation to assess the long-term impact of this training in practice is needed, however it is hoped that more projects of this nature will be adopted in the future. [ABSTRACT FROM AUTHOR]

Accessible summary • We ran a group for 6 people with a learning disability who worry a lot. The group last for 12 weeks and each person in the group brought someone with them. • People said they found the group helpful. People said they learnt ways to cope when they get worried. • This research will help staff to think about how they can help people who worry a lot. More research is needed to find out which bits of the group were most helpful. An anxiety management group utilizing a cognitive behavioural intervention, of 12 weeks duration, for six people with mild to moderate learning disabilities is described. A number of techniques to assist in developing clients’ understanding of their anxiety, cognitive and behavioural coping strategies and maximizing generalizability of skills learnt were implemented. Outcome measures demonstrated that two participants showed a clinically significant reduction in anxiety levels. Qualitative feedback from both participants and carers suggested that all group members developed coping strategies. Measures also indicated that carers demonstrated a better understanding of the individual's difficulties and were able to support them more effectively. Adopting a cognitive behavioural approach proved valuable and recommendations for future interventions are made. [ABSTRACT FROM AUTHOR]

Accessible summary This article looks at a simplified version of a widely used assessment tool called Clinical Outcomes in Routine Evaluation – Outcome Measure (CORE-OM). • The main reason for carrying out this piece of research was to help people with a learning disability understand a simplified version of CORE-OM, and help them tell people how distressed they were feeling. • People with learning disabilities helped us test out the measure in different ways to see if it worked properly. • We found one particular way worked really well, but we will have to check this out with more people to make sure. • The people we tested found the simplified CORE-OM very helpful; they also made some suggestions on how to make it better. We are enthusiastic about developing this, so other people with a learning disability can use the measure in the future. There are few reliable self-report measures suitable for people with a learning disability in reporting psychological distress. This study examines the modification of the Clinical Outcomes in Routine Evaluation – Outcome Measure (CORE-OM), exploring its reliability, using two different presentation styles. One style included a sequencing task then use of a visual histogram scale to facilitate rating; the other prompted participants to indicate presence or absence of symptoms before using the histogram. The study was conducted on a small sample of people with mental health problems who have a mild learning disability. The modified CORE-OM was found to have an excellent test–retest correlation with the group who completed the sequencing task, then the histogram scale, but the other group produced less favourable results. The preliminary results are encouraging, highlighting the need to conduct a larger study after further modifications of the measure. [ABSTRACT FROM AUTHOR]

Accessible Summary •In Japan, there is a growing network of self-advocacy groups. Some groups are involved in campaigning. Other groups are involved in social events and education. • The age of de-institutionalization is gradually arriving and community living for people with learning difficulties is becoming an urgent political issue. • Self-advocacy groups can help people to settle and be accepted in the community. • It is important to think about how self-advocacy ideas will fit with traditional parts of Japanese culture. [ABSTRACT FROM AUTHOR]

Accessible summary • People with learning disabilities can have mental health problems like anyone else. • People with learning disabilities should be able to use the same mental health services as anyone else. • In this article we say how we have tried to make this happen. It is now well recognized that people with learning disabilities experience the full range of psychiatric disorders. Public policy in the United Kingdom advocates that people with learning disabilities should access mainstream mental health services. Here we discuss the challenges this policy presents, and then describe the somewhat tortuous and unpredictable processes we went through to set up a service that properly enabled such access. We describe the service model in some detail, then reflect on overcoming barriers to implementation, and how we maintain the service model. Finally we draw some lessons for future service development initiatives. [ABSTRACT FROM AUTHOR]

Background There is an increase in people with learning disabilities with offending and other disturbed behaviour who are placed in the local community and out of their area of origin. Aims To compare clients placed locally and out of area. Method All authorities in an English region were surveyed and interviewed about their clients placed locally and out of area. Results External placements were common place and expensive especially for clients with complex needs. Information regarding these clients was variable as was the joint commissioning process. The population was predominantly young and male requiring high levels of long term funding. Conclusions To reduce flows of high cost clients out of area, there is a need to develop joined up commissioning, and monitoring of services and partnerships with local providers to increase capacity and improve quality. Better information would enable commissioning to become less reactive. [ABSTRACT FROM AUTHOR]

Individual plans for people with intellectual disabilities were evaluated for quality and effectiveness in improving quality of life. Quality was assessed by rating whether goals were relevant, observable, age appropriate, necessary, timetabled, developmental, measurable, realistic, assigned to staff and improving at least one of O'Brien's five service accomplishments [ O'Brien & Tyne (1981) The principle of normalization: a foundation for effective services. London, Campaign for the Mentally Handicapped]. Effectiveness was assessed by examining quality of life outcomes for participants with and without individual plans rated as higher quality. No significant difference in outcomes associated with having a higher quality individual plan was found. Findings present a challenge to current expectations that presence and quality of individual plan goals are associated with improved outcomes. Written individual plan goals may not be directly correlated with actual practice, and further research is required to examine this. [ABSTRACT FROM AUTHOR]

This article is about a training project run by Central England People First (CEPF). CEPF has been doing workshops, conferences and other training for over 10 years. It seemed like a good idea to help other people with learning difficulties to learn how to be trainers. This would help them to speak out about their lives and the services they want. CEPF asked the Department of Health for some money to design a ‘training for trainers’ programme, and try it out. The Department of Health agreed, and CEPF set up the National User Training Development Project. The training team designed a 2-day programme, and asked people in different parts of the country to try it out. Eight organizations agreed, including a care village, another People First group and two social services departments. Eighty people with learning difficulties and support people took part. The project team told them about what training is for, and how to organize it. They also had the chance to try out their own ideas. They practiced ‘role plays’, ‘speaking up’, doing quizzes and using video recorders. At the end, the people who took part filled in evaluation sheets, so that the team could find out if the training was useful. Most people said that they had enjoyed it, and that they had learned something. At the end of this project, we think we have learnt two things: 1. People with learning difficulties can be good trainers, because they are experts about services and the things that are important in their lives. 2. Using training can be a good way of helping people with learning difficulties to speak out about how they want to be treated. [ABSTRACT FROM AUTHOR]

Despite the growing trend for the development of befriending services, there is a paucity of research about the views of people involved with these services and the effectiveness of service provision. This article describes some of the views and experiences of paid workers, volunteer befrienders, service users (befriendees) and family carers involved with seven befriending services for children and/or adults with learning difficulties in England. Although each of the befriending services shared the broad purpose of increasing the friendship circles of the befriendees, their aims and the ways in which they worked, differed considerably. The focus of the article is on some of the key issues that the befriending services faced, factors that were found to contribute to good practice within befriending services and recommendations for good practice. [ABSTRACT FROM AUTHOR]

There has been a welcome recent shift towards taking account of the views of those who have traditionally been seen as lacking competence, including those with learning disabilities. Innovative methods have been devised to help people express their views and research demonstrates that people with learning disabilities can be taught this skill. However, none of this work has involved people with profound and multiple learning disabilities and serious doubts have been raised about the extent to which it is possible to ascertain the views of this group. Those operating at a preintentional level may not express, or have, views in the usually understood sense. Methods which attempt to ascertain the views of this group are highly inferential and it is often only possible to infer immediate preferences. It is important that the limitations of such methods are acknowledged. A case study is used to demonstrate that, in relation to major life decisions, taking account of a wide range of assessment information may give a clearer picture of the preferences of someone with profound and multiple learning disabilities than subjective interpretations of their behaviour or proxies. This should be combined with a focus on teaching the person so that they acquire as much control over their own lives as possible. [ABSTRACT FROM AUTHOR]

Despite recent political commitment to increasing access to all levels of health service provision for learning disabled people, there is still limited access to in-patient child psychiatric care for learning disabled children. This article describes the experiences of an in-patient unit integrating learning disabled children into a peer group, the majority of whom have normal intellectual function. A case note review was undertaken of all children with a global learning disability admitted to the Collingham Gardens in-patient Unit between January 2000 and December 2001. We discuss how similar services may be developed to be more inclusive for learning disabled children. [ABSTRACT FROM AUTHOR]

There is a paucity of studies exploring the frequency of problem behaviours in people with learning disability and hearing impairment. Deafness in learning disability has been described as a ‘double jeopardy‘ because the difficulties are compounded to be more than the sum of their parts. The aim of the study was to ascertain the prevalence of hearing impairment in a community population of adults with learning disability and then investigate their access to audiology. We also aimed to collect information on the prevalence of problem behaviours in this population and explore links between hearing impairment and the use of hearing aids and problem behaviours. The prevalence of hearing impairment was 9.2%, 70% had been seen by audiology services at some time in their life but only 24% had ongoing assessments and hearing-aid maintenance. Sixty-two percent of the population had problem behaviours and 34% had self-injurious behaviour. The high prevalence of problem behaviours and self-injurious behaviour found in this population compared with other studies suggests a need for further research. These findings also reveal that the hearing status of people with a learning disability continues to be overlooked as the deafness often gets lost among their other problems. [ABSTRACT FROM AUTHOR]

This article shows why people with learning difficulties need to do research about learning difficulties. The authors' research group has been running for about 4 years. It has eight members. About 6 years ago the Adult Training Centre in Carlisle, England started closing down. The authors went in to ask people with learning difficulties what they thought and felt about it. The first People First group came about in October 1984 after some people went to a conference on self-advocacy in the U.S. It was called People First of London and Thames. Since then it is thought there are about 1200 self-advocacy type groups in Great Britain for people with learning difficulties.

Carlisle Research Co-op is a group of eight people who aim to do person-led research in a way that changes ideas and makes life better for people labeled as having learning difficulties. The group includes four men and four women. Six members of the group are labeled as having a learning difficulty. The other two people act in a role of involved support. This article features an attempt by the two members of the group who have support roles to explain what they do, and to look at the changes that have taken place within this group. Support is a role that bridges the gap between what people want to be doing, and what they are rejected from doing by the way things are.