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Accessible Summary: This paper reviews the present educational needs of children and young people and autistic spectrum disorder (ASD) in Egypt.Children with ASD are largely unrecognised by the educational provision in Egypt.This paper highlights the need for an improved educational programme for children with ASD who also experience an associated learning disability and learning difficulties.It is crucial to develop teacher support programmes and empower teachers to enable children and young people with ASD develop their fullest potential. This paper outlines, through a transnational discourse between partners in Egypt and the UK, an overview of the literature on the definition and features of autistic spectrum disorder (ASD) with associated learning needs and health conditions as applied to children and young people in Egypt. As a low‐ to middle‐income country, Egypt has a poor and underdeveloped health, education and social service to support children with ASD and very little research has investigated this phenomenon. This paper adds to the discussion through the shared knowledge and practice in the educational curriculum of children with ASD in Egypt. [ABSTRACT FROM AUTHOR]

Accessible summary: To feel safe and to keep well, all of us need to stay in touch with our friends—most of all in the pandemic, and even more if we have a disability.In these times of COVID‐19, we have kept a community group for men with learning disabilities going online.In the gaps between lockdowns, we have met in a mixed online and face‐to‐face group—with the face‐to‐face part happening in a library.The men say that they have been helped by both kinds of meeting, but that they liked the mixed or "hybrid" one the best.This article shows what we have learned from running the group in these ways, and it gives advice for anyone who might want to have a go themselves. Background: Social contact and belonging are among the most important keys to health and wellbeing, especially for the most vulnerable during the current global pandemic. Method: This reflective paper describes the authors' efforts to sustain an online version of a well‐established community psychology‐oriented group for men with learning disabilities, in challenging times. Drawing upon the learning disability literature and upon theories from community and embodied‐dialogical psychology, it explores the most salient shared issues, our joint efforts to address them and possible implications for future clinical practice. Findings: To take advantage of the discovered benefits of online working, we envisage that, post‐lockdown, the group will continue to meet in a "hybrid" (combined face‐to‐face and online form) as described herein: and with some pointers for anyone who might wish to create a similar group. [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]

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]

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 article discusses various reports published within the issue, including one by Ghazala Mir on the reality of health care provision and another by Rachael Wood and Margaret Douglas on cervical screening of women with learning disabilities.

Accessible summary People with learning disabilities do not live as long as other people or as long as many should., Nationally, people with learning disabilities do not get as good help when they do get ill., This paper looks at work that was conducted in Lincolnshire to see how the health of people with learning disabilities compared to the rest of the population., The report recommended changes which could be made to make things better., Summary The NHS Constitution requires all NHS organisations to provide high-quality comprehensive services, based on clinical need, which do not discriminate between patients (DH 2010a). Together with its health and social care partners, the NHS also has a statutory duty of care to meet the needs of all patients with dignity and compassion. Recent evidence has revealed sharp failures in the NHS to meet these goals in relation to people with learning disabilities nationally. This article considers the well-established evidence that the latter group have worse health experiences and worse health outcomes than the population as a whole, which significantly contributes to marked inequalities both in morbidity and mortality. The public sector equality duty of the Equality Act 2010 imposes a statutory requirement on health and social care agencies to address such inequalities. This article draws on the first systematic health needs assessment ( HNA) of adults with learning disabilities in the county of Lincolnshire, established in 2011 to identify their health needs and make recommendations for improvement. [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]

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 • 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]

This paper describes how a group of five older adults with Down's syndrome decided what they wanted from their doctor. The group worked out what they meant by health. The group also looked at what it was OK for a doctor to ask or do. They made lists of these. The group decided that being healthy means being able to do things. Feelings, of being scared for example, are an important part of being ill. Older adults with Down's syndrome are able to say what they want from their doctor. They can be helped to do this by working together in a small group. [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]

Impacted earwax is extremely common in people with learning disabilities. Although it is not a serious medical condition it causes a number of very unpleasant problems. These symptoms include discomfort in and around the ear, hearing loss, dizziness and noises in the ears. It also causes secondary problems with ear infections and hearing aid use. This paper reviews the clinical symptoms of impacted earwax and investigates possible causality. Evidence shows that people with learning disabilities are twice as likely to have impacted wax than the general population. The reason for this association is unclear. In the present study, the correlation between the occurrence of chronic wax obstruction and a reduced ability to chew due to the absence of back (molar) teeth was investigated. In the current pilot we have used clinical records to establish the presence of chronic wax obstruction and postal questionnaires to ascertain participants’ dental status. The results of this study show a positive relationship between chronic earwax obstruction and the absence of back (molar) teeth. These findings have significant implications and should be considered when planning the health care of people with learning disabilities. [ABSTRACT FROM AUTHOR]

Despite the rhetoric of involvement of people with learning disabilities in health care there is a dearth of research which examines the extent to which service users are included in evaluating their own care. This paper describes a study of methods for enabling people with learning disabilities and complex health needs to comment on the specialist inpatient care they received. Six service users consented to take part in interviews using analogue scales and photographs. The participants were able to engage in all elements of the interviews even though inclusion was more challenging because of additional health problems such as manic depression and paranoid psychosis. The suitability of research tools and approaches are discussed and barriers to inclusion identified. In this investigation a gap emerged between government policy of inclusion for everyone, and the realities of frontline practice where involvement was not achieved for some users with severe/profound disabilities. The study points to implications for increased resources, education and training if meaningful user involvement is to become established for individuals within routine practice. [ABSTRACT FROM AUTHOR]

With the promotion and wider acceptance of the concept of ‘normalization’ and ‘community integration’, an increased number of adults with learning disabilities are living in the community and facing more social and health care problems. The authors describe the introduction of new guardianship laws in Hong Kong with the creation of a Guardianship Board to safeguard the interests of all those who are mentally unable to make decisions about their personal, medical or financial affairs. Some case vignettes are provided to illustrate its functions and roles. By sharing the Hong Kong experience, it is hoped that this paper can raise awareness of circumstances in countries that are planning to develop or reform their guardianship practices for people with learning disabilities. [ABSTRACT FROM AUTHOR]

Background: Before COVID‐19, people with intellectual disabilities were digitally excluded, facing difficulties accessing and using technology. The pandemic outbreak closed down many in‐person services and supports for this population. Methods: This study examined changes in technology use to support the healthcare and social connections of older adults with intellectual disability in Ireland (n = 682) during COVID‐19. Decision tree analyses explored factors associated with using technology for health and social connection; and to explore relationships between technology use and subjective outcomes of stress/anxiety and of positives during this period. Findings: Technology use for healthcare and social connection increased during COVID‐19, but not enough to make up for the loss of in‐person care/connection. Residence type was associated with increased use of technology for healthcare utilisation, with the highest rates among community group home residents and the lowest among those in independent/family settings. Increased technology use to speak with both family and friends was associated with prior digital skills and digital access. Increased technology use was significantly associated with both positive and negative experiences during the pandemic. Conclusions: The COVID‐19 pandemic offered an opportunity for increased digital connection for older adults with intellectual disabilities, but not all benefitted. Those with prior skills, available supports, and the greatest need to connect were more likely to enhance their use of technology. The complexity of the COVID‐19 period, including the general impact on mental health and well‐being, means that the role technology played in supporting quality of life and mitigating stress/anxiety needs further and longer‐term investigation. Accessible summary: Older adults with an intellectual disability in Ireland used technology more during the COVID‐19 pandemic—to use health services, and to speak to family and friends.Having digital skills before COVID‐19 helped people to increase their use of technology.Technology helped many people to stay connected, but did not fully make up for the loss of in‐person services and contact.Participants who used technology more during COVID‐19 were more likely to report some positive things during COVID‐19.Participants who used technology more were also more likely to feel stress or anxiety during COVID‐19.This shows that COVID‐19 was difficult for many people. But the study also shows that most people also found some good things during this time. [ABSTRACT FROM AUTHOR]

Background: During the COVID‐19 pandemic, social distancing measures were enforced and the national lockdown underlined our reliance on virtual means as a way to communicate. This new way of interacting highlighted that people with an intellectual disability were a large proportion of a digitally excluded population. Methods: A service evaluation, using a mixed method design in the form of four self‐reported outcome measures and qualitative feedback. Findings: Clinical services need to continue when face to face sessions are not possible. Remote groups can be an alternative option not only when self‐isolating due to pandemics but when living in remote locations, having physical health problems or excessive expenses and travel costs. Conclusions: Online dramatherapy groups can be a beneficial alternative when face to face groups are not possible or challenging to attend due to access difficulties. Online groups can offer opportunities to meet with peers, build relationships, improve confidence and learn new skills in technology. Accessible summary: Groups delivered online, using the internet, are an option for people with an intellectual disability when attending a group in the community is not possible.Online dramatherapy groups can provide people an opportunity to share stories and experiences through creative means.Friendships can be established through facilitated online group platforms.Online groups introduce people to technology and opportunities to learn digital skills that can be used outside the group. [ABSTRACT FROM AUTHOR]

Accessible summary: People with severe and profound intellectual disabilities need others to support them in most areas of their life. It can be difficult to communicate with people about change and transitions have been identified as an area of concern.As part of this research, we spent time with six adults with severe and profound intellectual disabilities. We talked to their families and professionals about their transitions and how they were involved in decisions that were made. Relationships people had with family members and key staff facilitated their engagement and experiences of the world.Our findings show that it is important that those who know the person well are closely involved in the planning of transitions. There should be a greater focus on maintaining the relationships that people have so that we can build bridges between settings and improve transitions for people with intellectual disabilities. Background: Within the current literature, there is a focus on early transition experiences, such as people's school years, while adulthood remains a lesser researched chapter in the lives of people with intellectual disabilities. Furthermore, most studies focus on those with mild or moderate intellectual disabilities and people with severe or profound intellectual disabilities are often excluded from research. Methods: This article explores the transition journeys of six adults with severe intellectual disabilities, including transitions from school to adult services and moving out of the family home. Data collection involved observations, document reviews and interviews with families and professionals in Scotland. Taking an ethics of care perspective, our focus was to explore in how far each person had people in their lives able to listen to them and if, in turn, those close to them were listened to during times of transition. Findings: Our findings demonstrate that transitions are complex processes that occur across different systems. Additionally, our findings emphasise the importance to consider relationships that are available to people within their adult lives when planning and supporting transitions. Combining interviews with observations helped us to see how the six adults showed agency and were communicating their preferences through the relationships they had with people within their immediate environment. Conclusions: The need to reconceptualise participation from a relational and interdependent perspective is stressed to facilitate the involvement of people with severe intellectual disabilities within decision‐making processes. [ABSTRACT FROM AUTHOR]

The aim of the present paper was to examine general practitioners' (GPs') beliefs about: the demands made on the primary care team by people with learning disability; their confidence in meeting health care needs and perceived training requirements; attitudes towards specialist or generic health service provision, and current contact with specialist teams; and attitudes towards screening in people with learning disability. A postal questionnaire was sent to a randomly selected partner from 95% of the practices in the Southampton and South-west Hampshire Health District. Forty-eight (75%) GPs responded and few were undecided about the demands placed on primary care teams, but beliefs were mixed. Most GPs were confident in dealing with the medical care needs of people with learning disability and the majority felt that training courses would not be worthwhile, except to learn more about specialist services where contact was very low and a ‘link worker’ scheme had had little apparent impact. Most respondents agreed that GPs should meet the medical needs of people with learning disability as part of general medical services and approximately half had a positive attitude towards providing regular health checks. Respondents were cautious about offering cervical cancer screening to women with learning disability. A small minority suggested that they would take no action to follow up a non-attendance for mammography. As a heterogeneous population, it is not surprising that GPs' attitudes vary widely. Further research is required to establish the nature and scale of demands made on primary health care teams, and to evaluate systematic means of addressing health care needs of people with learning disability. [ABSTRACT FROM AUTHOR]

Accessible Summary People with learning disabilities talked about what it was like to move out of hospital. People talked about how important their relationships with other people were. People wanted to feel comfortable with new members of staff so that they felt safe and happy in their new home. People talked about how moving out of hospital changed how they thought about themselves. When they were in hospital, people sometimes thought that they were “bad.” But after they moved, some people started to think that they were a different person. It is important for everyone to think about how they talk to people when they are in hospital, and when they have moved out. People can do really well living in their own home, rather than in hospital. Abstract: Background: People with learning disabilities are moving out of hospitals as part of the Transforming Care programme, although thus far their views on how they have experienced this have not been researched. Materials and Methods: A qualitative design was used to explore how people with learning disabilities experienced moving as part of Transforming Care. Eleven people took part in semi‐structured interviews; they were supported by Key Support People (n = 9) who knew them well. A social constructionist Grounded Theory approach was used in analysis. Results and Discussion: People reported that their relationships with other people, including friends, family and staff, played a significant role in how they experienced the move. Moving was also an opportunity for people to shift their ideas about who they were as a person and opened up a wider array of stories about their identity. Conclusions: A number of recommendations are discussed, relevant for staff working in this field to support positive transitions out of hospital. [ABSTRACT FROM AUTHOR]

Accessible summary: When young people with learning disabilities leave the care system, they can experience many problems. Here we describe some of these problems and what they do (or would like us to do) to improve things. Young people do not always want the same things that professionals or family carers want. We do not spend enough time listening to what young people can tell us. Abstract: Background: Young people with learning disabilities are frequently underrepresented in research accounts. This study describes the experiences of young people moving from the care system. Methods: We scoped the English and Swedish literature for first‐hand accounts and interviewed four young people with learning disabilities leaving the English care system. We combined findings from both sources. Findings: “Grey” and campaigning literature are more likely than academic studies to include the voices of service users, but even then, the voices tend to be those of professional or family carers. Both the literature and interviews demonstrate young peoples’ awareness and understanding of the social as well as financial benefits of work. Good foster care could be precarious, and young people in unhappy placements lacked direction. Exploitation around a young person's housing and finances could be problems. There was evidence of “threshold” difficulties in accessing services. Conclusions: Despite an NHS commitment to listening to users in the UK, and similar aspirations in Sweden, our search of the literature identified few studies reporting care leavers' with learning disabilities own words. Our data add to the voices of a group frequently silent or silenced. We found evidence of resilience and hope as well as difficulties and frustrations. The accounts in the literature and our interviews provide data on what it can be like to try to operate “the system.” The people we spoke with and those whose accounts we found in the literature were thoughtful and engaging. They provide an important source of knowledge for policy and practice. [ABSTRACT FROM AUTHOR]

Accessible summary We gave a questionnaire to self-advocates who were attending a conference. The questionnaire asked them how they felt about the information they get with their medicine., Fifty-eight people completed the questionnaire. Many of them said they did not get enough information about their medicine. Most people wanted easy-read leaflets and pictures., There are many different places to find easy-read information on the internet. We think they should be collected and checked. We also think that doctors and chemists need to spend more time with people to explain about medicines., Abstract Background Previous research has found that people with learning disabilities are not given prescription information that is tailored to their needs. We wanted to find out people's information requirements. Materials and Methods A questionnaire was co-produced by the authors and consultants with learning disabilities. It asked what information people received from their GP and pharmacist about medications. The questionnaire was circulated at a self-advocacy conference in the North of England. Fifty-eight self-advocates completed the questionnaire. Results Information from GPs and pharmacists was mainly instructional, referring to when and how to take the medicine and dosage. Most respondents struggled to read the leaflets and remember verbal information. Many wanted the information in easy-read format, and some wanted pictures or diagrams as well. A key theme was that health professionals often talked only to carers or support workers rather than involving the patient directly, and some respondents disclosed that they were not informed about side effects or alternative medications. Conclusions Health professionals should take time to discuss health issues and medication with the individual rather than only with carers. This could be facilitated by providing information in an accessible format. [ABSTRACT FROM AUTHOR]

Accessible summary The government suggests to the NHS what talking psychological therapies should be given to people when they have worries or problems., This study examined a service for people with learning disabilities in Scotland. It tried to find out whether the service was doing what the government suggests., The study found that the people who were seen by the service often had more than one difficulty, and the service gave extra talking psychological therapy to them., We think that this study shows that people with learning disabilities should have more treatments available for them to meet their needs., Abstract Background For services across the UK, increasing emphasis is placed on the use of evidence-based psychological treatments. In this context, the Scottish Government published the MATRIX, a best-practice clinical governance document, with a brief section on therapies for people with learning disabilities. As with most clinical guidelines, randomised controlled trials were considered the 'gold standard.' However, within the learning disability field, the existing evidence base is relatively limited, resulting in a narrow guidance for services. Methods This study evaluated the use of best-practice guidance (the MATRIX), in a psychology service for adults with learning disabilities, covering one of the largest NHS Boards in Scotland. A randomly selected 50% ( N = 73) of case notes opened since October 2011 (publication date for the MATRIX) was reviewed. Eight case notes were second-rated by an independent clinician. Results Findings showed that service users typically presented with multiple psychological difficulties, and clinicians offered a range of therapies additional to those suggested in the guidance. This was particularly evident in cases managed by clinical psychologists. Conclusions Applying rigid therapeutic recommendations may limit opportunities for integrative practice. The potential impact of inflexibly adopting clinical guidelines on service planning and resources is discussed. [ABSTRACT FROM AUTHOR]

Accessible summary This article synthesises current literature regarding ageing and service provision for people with an intellectual disability., People with intellectual disability are living longer., Services need to respond to the needs of older people with intellectual disability., Summary People with an intellectual disability are living longer, and the numbers continue to rise. Ireland has and is seeing a dramatic change in the age profile of clients and the support services they require. While Ireland had specifically trained nurses in intellectual disability, they predominately work in residential settings. This can be seen as been at odds with the philosophy of supporting people with intellectual disability live at home with their family and the primary care system. As the ageing population is rising, intellectual disability services need to proactively develop and respond to this changing age profile by reviewing and adjusting the way in which they deliver services, not only in terms of how services develop and respond to a changing age profile but also in terms of collaborative working across all health services. [ABSTRACT FROM AUTHOR]

Accessible summary Our health service ran a group to support people to stand up for their human rights., People with learning disabilities have their own stories to tell about human rights., Group members created a character called FREDA (fairness, respect, equality, dignity, autonomy) to understand how human rights laws affect their lives., The group did not follow its original plan. The group shared their own knowledge and experiences with each other. Acting on what people in the group wanted was most important. Written by Tina O'Connor1 , Summary Service user inclusion is a key component of a human rights-based approach to healthcare and models of inclusion are developing rapidly. This article describes work with a group of NHS service users, designed to increase their knowledge of human rights, as part of a broader set of initiatives focussing on changing organisational culture. During a mutual learning journey, 'co-production' emerged as a preferred model for promoting service user's understandings of human rights. 'Co-production', or sharing service design and delivery more equally with service users, led to outcomes that were initially inconceivable. During the group, co-production appeared to be a vehicle for resolving dilemmas about services 'empowering' service users. This article considers how, when service user involvement and a HRBA are combined, a move away from tokenism towards collaboration, empowerment and redistribution of power is possible. [ABSTRACT FROM AUTHOR]

Accessible summary • People with learning disability have worse health than other people • General practitioners and other people working with them were offered training on different topics such as communication and the work of the community team. • Afterwards all the GP practices introduced changes which made it easier for people with learning disability to use their local surgery. The relatively poor health of people with learning disability reflects the failure of primary care practitioners to improve the accessibility of the service they offer. This North Essex study involved evaluation of a project to work with three primary care practices to raise staff awareness, improve their training, and adapt their working practice. While GPs and other practice staff recognised their training needs, only one practice released all staff for a one day training course. Nevertheless, all practices worked to produce Practice Development Plans which resulted in improved accessibility for People with Learning Disability. The project also opened up a channel of communication between the practices and the Community Team for People with Learning Disabilities (CTPLD). This study forms one strand of a three-part project to improve access to primary care. [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 • People with learning disability are just as likely as people in the general population to get cancer. • In this study we have looked at how often clients who get cancer are admitted to hospital. • We found that clients who get cancer are admitted to hospital much more often than clients who do not get cancer. • We also looked at the experiences of two clients to show what clients have to go through when they get cancer. • This research could help parents/carers and clients to know what to expect when people with learning disability need treatment and care for cancer. In Australia, general health and medical services are subsidised by the government. This includes care for people with disabilities, screening and diagnostic services for common diseases, including cancer, and care and treatment for various medical conditions. In Western Australia, the majority of state-provided health services are well documented in linkable databases. We have examined data from a large cohort of people receiving services for learning disability from the state and linked this with the state cancer registry and hospital records. While people with learning disability appear to be at similar risk for cancer, they may have poorer treatment outcomes as they already experience a range of health conditions which can exacerbate medical complications associated with treatment and/or other primary or secondary co-morbid conditions. Our results show that the mean number of hospital admissions were higher for the cancer group, even when adjustments were made for conditions such as childhood leukaemia and renal dialysis both of which often require frequent hospitalisations. Multivariate regression analyses showed that younger age, female sex and severe or unspecified level of disability were significant contributors to the frequency of hospital admissions. Qualitative information gleaned from detailed chart reviews showed that in addition to considerable morbidity, some patients were admitted repeatedly either because of lack of supportive environments and/or lack of compliance with treatment. Issues in providing appropriate support services for individuals and their carers are discussed. [ABSTRACT FROM AUTHOR]

People with learning disabilities have more health needs than the general population and face greater difficulties in getting good health services. In February 2006 NHS Quality Improvement Scotland published a ‘National Overview of Health Services for People with Learning Disabilities’. This was a summary of the standard of health services in each of the 15 main Health Boards areas in Scotland. The quality of services was measured by peer-review teams visiting each of the 15 geographical areas and using a set of quality indicators. People with learning disabilities and carers were part of the review teams. This article reports on how good the quality of health services was for people with complex health needs (for example, people with challenging behaviour, mental health problems, multiple and profound impairments). There is some evidence that the Health Boards providing the best quality services to people with complex health needs were the ones providing good quality services overall. This article describes the use of a set of evidence-based quality indicators to assess performance by 15 NHS Boards across Scotland in a national review, with a particular focus on the quality of services for people with complex health needs. Evidence based best practice and evaluative data from previous inspections were used to develop Quality Indicators in four domains. Areas reviewed were: involvement of children and adults with learning disabilities and carers in service planning; meeting complex health needs; inpatient/hospital services and planning services/partnership working. A connection between the group of quality indicators used to assess performance in ‘meeting complex health needs’ and overall measures of quality was observed. The importance of good quality services for people with complex health needs is discussed in light of these results. [ABSTRACT FROM AUTHOR]

Accessible summary Steve Day worked on a project with North Somerset People First for his Masters degree. It was called Cutting Up Sharks. The title comes from the PostModernist artist, Damien Hurst, who once gave an exhibition where he preserved cows which had been cut in half. Mr Hurst did a similar thing with sharks, except they were kept in one piece. As sharks are far more dangerous than cows, we decided to cut up the sharks instead. We live in an unsafe world; nevertheless people with learning disabilities seek inclusion. The Cutting Up Sharks project used people's own individual stories as research. We looked at what people mean by the words success and failure. In today's world, success can begin to look like failure, yet sometimes failures often seem successful. In this sense, the right to take risks can empower individuals, as well as groups of people, to transform their own circumstances. Yet being equal and being included in a dangerous world means that if we are truly citizens we are also truly targets. If ever there was a right time to write about Learning Disability Services in the context of a transformation, this is it. I am not writing about the subject as a single entity, divorced from the bigger picture of what is happening to society and the world about us. Whatever ‘transforming’ is going on for people with learning disability, it is doing so in the context of a global market place. The concept of ‘Cutting Up Sharks’ identifies danger as a by-product of inclusion. On the world's stage the news headlines have the same implications for us all. The change in the construction and administration of both the National Health Service and Social Services has, and is, having a profound effect on the lives of people with learning disabilities. Those changes have come about, in part, due to a recognition of past failures. I have worked in Learning Disability Services for 19 years, I have seen in that time British society slowly, often painfully slowly, begin to recognize people with learning disabilities amongst its population. In a PostModernist world recognition is about visibility, which in turn makes people potential targets. The ‘Inclusion’ championed in ‘Valuing People’ brings with it a right to be recognized and in so doing people with learning disabilities are included in a ‘general loss of confidence within Western democratic culture’. ( Butler 2002 , p. 110) Inclusion becomes not merely a question of service provision, it is also about bombs on buses, famine and bird flu, global warming and fragile democracies. There is a creaking door opening for people with learning disabilities, providing them recognition within the PostModern construct of fragmented societies. I would contend that against such a backdrop there is a real chance of the failure to meet the needs of people with learning disabilities becoming transformed. [ABSTRACT FROM AUTHOR]

Accessible summary • This research was done in Ireland with carers of children with learning disability. • The researchers wanted to learn more about how carers cope and why carers use respite care. • This research found that: (a) There were no differences between large and small families in the amount of respite they used. (b) Children who needed a lot of support with personal care or who had difficult behaviours did not use respite care more than children without these needs. (c) Female carers mostly coped by doing something to solve problems. (d) Male carers mostly coped by trying to understand problems in a different way. (e) Male and female carers sometimes coped in similar ways, for example, seeing the funny side of problems and making sure they had free time for themselves. • This research will help service providers to plan and run respite care to suit families better. Other researchers will understand more about how male and female carers cope. The study aimed to identify patterns of respite use and coping strategies among family caregivers in a region of Ireland. Firstly, we asked what child and family characteristics were associated with use of respite care. Secondly, we explored coping strategies reported by family carers. The study was undertaken with a view to informing respite service provision and redressing a gap in the literature on family caregiving. Findings differed from former research by suggesting that the likelihood of families using respite care was not significantly related to presence of challenging behaviours or level of support required by children. Additionally, likelihood of using respite care was not significantly related to family size and social support. Female carers tended to use more ‘problem solving’ strategies than males. Male carers tended to use more ‘managing meaning’ coping strategies than females, although some strategies were shared across genders. The need for carers to have confirmation of high standards of care and the importance of supporting male carers was discussed. Study limitations and implications for service provision and research were explored. [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]

• Professor Frank Clark has always worked with people with learning disabilities in some way. • He helped a lot of people move out of hospitals and live a better life. • He has also made sure that many people with learning disabilities get equal health care. • Frank has worked in a hospice where people also got equal care and services when they were dying or had someone they knew die. [ABSTRACT FROM AUTHOR]