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Consanguinity is defined as the result of a sexual reproduction of two related individuals, but may also reference populations that share a common ancestor or communities that practise endogamy. There is a higher prevalence of genetic anomalies of the offspring of consanguineous relationships. However, the habit of blaming ethnic minorities for their own genetic conditions is unhelpful and has detrimental consequences for families and their children. This article discusses some of the issues related to consanguineous unions and their link to congenital abnormalities and the perceived increase in learning disabilities and considers how genetic services for people in consanguineous unions might be improved. The article focuses mainly on the Pakistani Muslim population in northern England with reference to local research. [ABSTRACT FROM AUTHOR]

The adult community learning disability team in Cornwall made a commitment to provide a better service for people with profound and multiple learning disabilities (PMLD). This resulted in audits against government papers and reports that encourage high-quality care for people with PMLD and a range of projects, including care pathway development and implementation, staff training and improving links with primary care. The care pathway aims to provide multidisciplinary assessment and intervention for people's specialist health needs. Evidence shows that it has had a positive effect, but also identified areas for furth er work. Further recommendations have been proposed to improve care delivery for people with PMLD in the Cornwall adult learning disability service. [ABSTRACT FROM AUTHOR]

The Health Equality Framework (HEF) is an outcome measurement tool to record any work that learning disability nurses and other clinicians undertake to improve or stabilise the health and --well-being of adults who have learning disabilities. Learning disability nurses in the four NHS boards of the Learning Disability Managed Care Network (LD MCN) in south east Scotland have successfully implemented the HEF across community and inpatient services. The Scottish Government commissioned the LD MCN to evaluate the HEF implementation process. After episodes of care by nurses, a reduction in exposure to the determinants of health inequalities was noted. The range and quality of demographic and epidemiological data available to boards have been extended with clearly identified themes, trends and service gaps. The evidence can be used to inform and influence service improvement, public health initiatives and practice education. [ABSTRACT FROM AUTHOR]

Siblings of children who have a disability frequently take on care, responsibility and advocacy roles, often into adulthood. Support groups, workshops and training can foster positive sibling relationships and have several positive emotional and behavioural outcomes, including improved confidence, increased understanding of their sibling's disability and improved communication between siblings. They also enable time away from home, offer peer support and can help build resilience through development of coping strategies. This article presents findings of a service evaluation of a pilot group for young people with a sibling with a disability. The aim of the group was to increase understanding about disability, provide a space for peer support and for the young people to learn skills to help themselves and their siblings at difficult times. The group included a range of activities focusing on discussion and problem-solving. The article describes the evaluation, which was based on semi-structured interviews conducted with four of the young people following the ten-week programme, and discusses the themes that emerged from analysis. [ABSTRACT FROM AUTHOR]

Continence is regarded as a basic need and many continence problems can be addressed and managed effectively. People with an intellectual disability (ID) are at greater risk of developing urinary incontinence (UI), however action to address their needs is minimal and the quality of care they receive varies despite national care standards and guidelines. This article examines promotion of continence in people with an ID and explores the literature on assessment and management of need. It also discusses the factors ID nurses should consider when meeting the continence needs of people with an ID, including explaining important terms, and assessing and managing UI and continence promotion, as well as their role in providing care and support in a person-centred and inter-professional context. [ABSTRACT FROM AUTHOR]

Service-user involvement is important in learning disability services. Historically, professionals have struggled to involve service users fully in their care, and behavioural assessments and plans can be lengthy and complex. This article describes how a service user became fully involved in the development of his positive behavioural support plan and participated in training his care team. Involving service users in this way increases the validity and credibility of plans, empowers service users, promotes ownership and improves insight; and is, therefore, rewarding for service users and professionals. The article encourages nurses to be creative in meeting the challenges associated with service-user involvement to promote a person-centred approach. [ABSTRACT FROM AUTHOR]

International student exchange is an opportunity to discover and learn from practice in other countries but few students sign up. This article describes two European Union Erasmus Intensive Programmes that gave learning disability nurses from England and Scotland, special teachers from Sweden and Romania, and special educators from Norway, the opportunity to participate in international and multidisciplinary classroom learning about health, employment and educational services for people with learning disabilities. A module on this will be delivered online in the future. [ABSTRACT FROM AUTHOR]

Aim Eating, drinking and swallowing difficulties can have serious outcomes for children and adults with learning disabilities. Carers must adhere to management guidelines about mealtime support, and multidisciplinary teams must ensure this happens. A one-page point of care tool summarising the guidelines for a specific client, sometimes termed a 'mealtime advice mat' (MAM), is one method. The aim of this study was to determine whether MAMs are used in special schools, gain an understanding of their format and use and identify other methods of supporting adherence such as training. Methods Questionnaires were given to 14 speech and language therapists (SLTs) who work in special schools, and 13 members of staff of one London special school. Results The results suggest that SLTs use MAMS as common practice, and that there is agreement on their content and format, but not on the name of the resource. School staff also use this type of tool, but not directly at mealtimes. Conclusion Written, simplified guidelines to support children at mealtimes are used in special schools, however, although they contain similar information they vary in title and the way they are used. MAMs are simple and potentially cost-effective point-of-care tools that can reinforce eating and drinking guidelines, and can be used to measure adherence. Ensuring they are understood by and useful to carers requires further investigation. [ABSTRACT FROM AUTHOR]

The government has published the first-ever Women's Health Strategy for England to tackle the gender health gap. It is a ten-year plan that aims to address the obstacles faced by women when accessing healthcare and improve health outcomes for all women. [ABSTRACT FROM AUTHOR]

This article describes the author's sensory story project, which she set up last year to provide an affordable and self-resourcing method of helping people with severe or profound and multiple learning disabilities develop communication skills. The project was based on the author's research and experiences of working with students with special needs, and was funded through a website designed to put people with creative ideas in contact with those willing to back them. The article also outlines the outcomes of the project and the author's plans for it in the future. [ABSTRACT FROM AUTHOR]

Epilepsy is a serious medical condition that can have profound psychosocial effects. These effects can be minimised through self-management, but information about epilepsy can be complex and it can be difficult for people, especially those with learning disabilities, to understand and manage their condition. This group of people already experiences barriers to health literacy and the lack of accessible epilepsy information can further compromise ability to self-manage the condition. This article explores the existing literature relating to how people with learning disabilities are supported to understand their epilepsy, with particular focus on the effect of accessible information and education. Although research in this area is developing, it is limited, which therefore reduces the extent to which services can confidently use resources underpinned by evidence-based research. [ABSTRACT FROM AUTHOR]

With the deregulation of services, people with learning disabilities are now looked after across a wider range of organisations and by a wider range of care workers than ever before. In these situations, the fresh observations and reflections of nursing students on practice placements can be particularly beneficial in discerning gaps between theory and practice, and identifying potential courses of action to improve services for people with learning disabilities. For example, it appears that some professionals, highly skilled in their own disciplines, remain uncertain when delivering care to individuals with learning disability. This is partly due to a persistently confused use of terminology when referring to learning disability, because terms and their meanings tend to vary between disciplines. The unintended consequences of suboptimal care point to the need for careful learning disability awareness training across disciplines and throughout provider organisations. The authors advocate a single vision of care with a shared language if the support and treatment of people with learning disability is to improve. [ABSTRACT FROM AUTHOR]

The article explores a campaign led by a mother named Paula McGowan calling for mandatory compulsory training for British health and social care professionals in autism and learning disabilities. McGowan launched the campaign following the death of her son with learning disability in 2016. She shared her experiences during the Positive Choices and Positive Commitment conferences in Birmingham, England in April 2019.

The aim of the research described here was to determine precisely the role of registered nurses in caring for adults with profound Intellectual and multiple disabilities In residential care in Ireland. A qualitative descriptive study was carried out to explore nurses' perceptions of their role in this specific area of intellectual disability care. The objective of the research was to help produce evidence-based guidelines on caring for this group of people and thus Improve care standards. [ABSTRACT FROM AUTHOR]

People with learning disabilities are at increased risk of low bone mineral density, osteopenia, osteoporosis and fractures, compared to the general population, mainly due to higher levels of obesity or undernutrition, reduced weight-bearing exercise, and polypharmacy, including anti-epileptic and antipsychotic medications. Healthy lifestyles that reduce obesity and ensure adequate levels of vitamin D, calcium, protein, and a variety of vegetables, can protect people from developing musculoskeletal diseases and support bone health. Families, carers, and service users are seeking advice increasingly on the use of supplements that target bone health. This article reviews the evidence on bone health in people with learning disabilities, and examines the benefits of vitamin supplements and dietary approaches. It also makes some recommendations for practice. [ABSTRACT FROM AUTHOR]

In the UK, the use and misuse of restrictive practices with people who have intellectual disabilities are common. There is a lack of regulation to ensure that non-statutory standards and guidance are adhered to or to check on their outcomes. This article explores how, in the Australian states of Victoria and Queensland, exemplary legislation on restrictive practices has been implemented and how a similar programme of statutory change may help to reduce the use of restrictive practices in the UK. [ABSTRACT FROM AUTHOR]

This article outlines the initial training and continuing facilitation of team-based formulation groups in a community team for people with learning disabilities. Training was initially requested by community nurses following a marked increase in challenging behaviour referrals to the team. The formulation groups were attended by professionals from the multidisciplinary team on a bimonthly basis. A questionnaire using open-ended questions was designed to understand why professionals had decided to use formulation, how useful they had found the session, the effect of the session on their clinical work and whether or not service users had benefited as a result. Thematic analysis was undertaken of the data gathered. The 'master themes' that emerged were: supportive, reflective, development and learning, planning and confidence. It was also thought that the formulation groups should have protected time in teams to allow for team discussion of service users with challenging behaviour, consistent with the transforming care agenda. [ABSTRACT FROM AUTHOR]

Bowel cancer is the fourth most common cancer in England, and with one in 20 people developing the condition, it is the second highest cause of cancer deaths. If diagnosed early, treatment can be more effective and bowel cancer screening programmes can reduce these mortality figures, yet for people with learning disabilities, the uptake of screening is significantly lower than the rest of the population. Aims To describe the process of co-production when working with a group of people with learning disabilities to explore why they may be reluctant to access bowel cancer screening. Methods A consultation meeting was held with one of the authors, six people with learning disabilities, an advocate and two specialist nurses. A feedback session was organised and a report using clear information was written in conjunction with the participants. Findings Participants discussed what gets in the way of attending for bowel screening and what might help to increase uptake, including awareness, support and clear information. Conclusion Working in co-production proved mutually beneficial as local clinicians also learned how to communicate more effectively with people who have learning disabilities. [ABSTRACT FROM AUTHOR]

The Health Equality Framework (HEF) is a tool that records the work of learning disability clinicians to address the health inequalities experienced by a person with learning disabilities. This article highlights a project funded by the Scottish Government to implement version one of the HEF across the four health board areas of the South East Scotland Learning Disability Managed Care Network (MCN). Participants were engaged, motivated and positive about the HEF. However, three issues with its implementation were identified: IT problems, competing clinical demands and the need for additional training. Actions were put in place to support these concerns. The HEF has been widely accepted in the nursing workforce and is now integrated in current community learning disability nurse (CLDN) pathways. CLDNs need to ensure that administration time is built into their working day to allow them to complete the HEF. Training will be extended to include inpatient nurses and specialist nurses. [ABSTRACT FROM AUTHOR]

Mindfulness is used increasingly by nurses to help people with a learning disability - and their carers - to manage difficult emotions or situations. It is important, therefore, that nursing students are familiar with this technique. This article, written collaboratively by third-year learning disability nursing students and lecturers, describes a bespoke workshop that introduced the concept of mindfulness in nursing practice. It also gives a brief history of mindfulness, and considers the effect that practising mindfulness could have on nurses and the people they care for. The article concludes with some suggestions of areas for research. [ABSTRACT FROM AUTHOR]

Over recent years there have been changes to service provision for people with learning disabilities and their families; moving from the outdated custodial model to a social model that supports the person to live a life of their choosing. Nurses can play an important part in this and this article highlights the specific contribution of the learning disability nurse. Based on a study conducted by the author that captured the views of families of clients who moved from a long-stay psychiatric institution to a community-based learning disability service. This article discusses the concept of VIPs that arose from interviews with family members and shows four distinct themes that can be explored under the VIP acronym: very important people; various individual plans; visibly integrated people; and versatile interactive professionals. The importance of person-centred care alongside a family-centred approach is also discussed. [ABSTRACT FROM AUTHOR]

This article presents a summary of a pilot research study of the training needs of staff who support people with learning disabilities who are grieving the death of significant others. It examines evidence that people with learning disabilities have bereavement needs and why the topic should be highlighted. It also examines studies undertaken in this field and explores views of learning outcomes among participants in the pilot study. [ABSTRACT FROM AUTHOR]

In August 2015, the authors spent a month volunteering in Belarus with Chernobyl Children's Trust (CCT), a charity set up by Irish volunteers. CCT focuses on supporting children living in contaminated and disadvantaged areas in Belarus, as well as on advocacy and support for children with disabilities. This article describes the authors' experiences of engaging with the charity's programmes, exploring the issues around disability and working in an orphanage for children and young adults with disabilities. It also outlines how the skill set of the registered nurse in intellectual disability is transferable to this type of environment worldwide. [ABSTRACT FROM AUTHOR]

Numbers of learning disability nurses have fallen by 32% in England over the past decade. This has a damaging effect on the care of people with learning disabilities and/or autism, and for the most vulnerable – those who are inpatients in mental health hospitals – the risks are particularly high. [ABSTRACT FROM AUTHOR]

Diagnostic overshadowing is not a new concept for learning disability nurses, but the impact it has on people with Down syndrome is not always fully understood by many healthcare professionals and the public. [ABSTRACT FROM AUTHOR]

In Bradford, the Healthier Lives group, part of Bradford People First, and a local strategic health facilitator have been training professionals to become aware of the difficulties people with learning disabilities face when trying to access healthcare services. This article describes the preparation and delivery of a training session offered to pharmacists, during which some people's problems with medications were explained, and the reasonable adjustments pharmacists can make to improve access and meet the requirements of the Equality Act 2010 were discussed. [ABSTRACT FROM AUTHOR]

This article describes the implementation of an eight-week programme to teach research skills to people with learning disabilities. After a focus group was held to explain the purposes of the programme, and refine ideas and methods of teaching, eight people with learning disabilities took part In weekly training sessions delivered by staff from a university and an NHS trust. The sessions were positively evaluated by participants, some of whom have gone on to form their own research Interest and advisory group. [ABSTRACT FROM AUTHOR]

There is increasing evidence that the Health Equalities Framework (HEF) benefits people with learning disabilities, but there is little information about service users' and carers' views of it. This article reports on an evaluation of the HEF tool and the views of service users and carers, collected through a questionnaire. Findings suggest that service users benefit in many ways, based on the 29 indicator scales of the five domains of the HEF assessment: social, genetic-biological, communication, behaviour/lifestyle and service quality. The article outlines how HEF assessments reduced health inequalities, and includes examples of feedback about the outcomes. [ABSTRACT FROM AUTHOR]

People with epilepsy have a higher risk of bone fractures than those without the condition, and contributing factors include increased risk of falls, combined with poor bone health. Patients/service users should be advised by healthcare professionals how to maintain good bone health and reduce the risk of falls. This article reports the results of an audit, undertaken by staff at Hertfordshire Partnership University NHS Foundation Trust, that examined whether the learning disability psychiatrists, who run epilepsy clinics, informed patient s about how to reduce these risks. Following the results of the first cycle of audit, appropriate, easy-to-read patient information leaflets were developed, and the audit was repeated. Although the audit involved psychiatrists, the results have implications for learning disability nurses in their role in promoting health and well-being. [ABSTRACT FROM AUTHOR]

The hub and spoke model of nursing student placement has been around in various guises for some time. What began as an informal and unplanned arrangement is now policy, as student learners on placements are increasingly located across a range of environments to gain different experiences. Most commentaries on hub and spoke focus on the experiences of permanent staff and students on adult nursing programmes. This article describes a small-scale case study that examined perspectives on a hub and spoke placement programme of students taking a joint learning disability and social work degree. It also considers the placement providers' perspectives. Analysis shows that service providers focused on accommodating students as best they could within the parameters of their service and that, although the students found the experience disorienting initially, they appreciated the benefits of moving between localities [ABSTRACT FROM AUTHOR]

Aims The Care Act 2014 gives carers the right to an assessment of their needs and provides a structure for a more personalised approach to care and support. This study aimed to explore the perspectives of carers of adults with learning disabilities of the act, and examine the potential opportunities for, and concerns and misunderstandings about, its implementation. Methods A qualitative methodology was used, with face-to-face semi-structured interviews conducted with nine carers of adults with a learning disability. A coding framework identified elementary thematic patterns and formations, which were developed into more manageable sets of themes. These were refined and arranged to yield meaningful and potentially useful themes. The article focuses on one theme -- knowledge and implementation of the Care Act 2014. Findings All participants had heard of the act but none had received information about it from a learning disability healthcare professional, and believed it was difficult to find information about it. They recognised the significance of the legislation but their main concern was if, when and how its application would meaningfully affect their lives. Conclusion The enhancement of carers' status under the Care Act 2014 is an opportunity for learning disability professionals to practise more holistically and work collaboratively with carers, supported by legislation. Evaluation of the training of learning disability practitioners in how to engage with the act, and its effectiveness, should be undertaken to enable policymakers to enhance the potential for making, and sustaining, real differences to the lives of carers. [ABSTRACT FROM AUTHOR]

Aim To make the stories about former long-stay institutions available to a wider audience, preserve the history and improve societal attitudes to people with learning disabilities. Method Three groups of people with links to the institution were interviewed using a semi-structured approach (n=40). Participants were asked why they felt it was important to tell their story. Findings Responses were organised under three themes: being heard, preservation and education. A range of motivations exists for why people choose or conversely choose not to participate in oral history projects. Conclusion Having knowledge and understanding of these factors can help potential researchers to recruit and retain those whose stories are a vital link between the past and the future. [ABSTRACT FROM AUTHOR]

Background Children with a learning disability may process sensory information differently to their peers. They may display behaviours of concern when there is an increase in stress levels due to a hospital visit. Aim To explore parents' perceptions of using a stress sensory preferences interview and recommendations evaluation (SsPIRE) to elicit information about their child's sensory needs to improve their hospital stay as well as reduce behaviours of concern. Method Five semi-structured interviews took place with parents of children with Hunter or Sanfilippo syndromes. Thematic analysis was used. Findings Three common themes were generated: person-centred planning, confidence and interview amendments. Conclusion Parents reported that SsPIRE assists in improving the care given to their child in hospital and their own confidence in healthcare staff to manage their child's behaviours. [ABSTRACT FROM AUTHOR]

This article explores the creation of a specific protocol to prepare children and young people with learning disabilities effectively for theatre and to ensure appropriate support during recovery. The TEACH approach (time, environment, attitude, communication and help) was adopted to provide a framework for reasonably adjusted care. The theatre and recovery protocol was developed following complaints by parents of children with learning disabilities about unsatisfactory care, and after cancelled operations. The young person is offered a pre-admission visit and a hospital passport, which explores their likes and dislikes and enables staff to prepare for their specific needs and requirements. In recovery, a quieter and larger area has been created. The protocol has enabled staff to feel more confident and to individually address the young person's needs. This protocol could easily be adopted for many other people regardless of age or disability who need to have care altered to meet their needs. [ABSTRACT FROM AUTHOR]

The year 2019 was one of celebration for the centenary of learning disability nursing, but in other ways it was more of an annus horribilis. [ABSTRACT FROM AUTHOR]

The abuse revealed in last year's Panorama documentary, Undercover Care: The Abuse Exposed, was not an isolated event. In this article the authors describe previous events and the reactions to them, and warn that abuse will continue unless it is addressed wherever it occurs. [ABSTRACT FROM AUTHOR]

The presentation of challenging behaviour by people with learning disabilities can be persistent and can have a huge effect on the individuals concerned and their carers. Applied behavioural analysis has offered much promise in this area, but concerns regarding the use of aversive procedures, such as punishment, along with recognition of the human rights of people with intellectual disabilities, has led to the development of positive behaviour support (PBS). This article argues that, as an emerging concept, PBS is particularly vulnerable to corruption. To guard against this, PBS should always be based on data-based functional assessment and use empirically tested intervention strategies. [ABSTRACT FROM AUTHOR]

Irene Tuffrey-Wijne has made it her life's mission to campaign on behalf of people with learning disabilities and autism when it comes to end of life care and bereavement. [ABSTRACT FROM AUTHOR]

An acute hospital team that transformed the hospital experience of people with learning disabilities has won the Learning Disability Nursing category of the 2019 RCNi Nurse Awards. The learning disability nurse team is transforming the experience of individual patients at an acute hospital while evidencing its value by halving patients' length of stay. [ABSTRACT FROM AUTHOR]

In this article, the authors argue in support of the adoption of a broad definition of restraint in the treatment of people with learning disabilities. Various definitions of the term "restraint" are presented, along with the implications of varied definitions for practices. The authors argue that having a wide definition of restraint creates an opportunity to scrutinize all practices and ensure that nothing is missed.

Nurses will soon have access to clear face masks to help them communicate with people who rely on reading facial expressions. [ABSTRACT FROM AUTHOR]

New students to learning disability nursing are always welcome as they embark on an exciting and challenging career. [ABSTRACT FROM AUTHOR]

The government has announced £62 million in funding to help the discharge of people with learning disabilities and/or autism from mental health hospitals into the community. [ABSTRACT FROM AUTHOR]

Tributes have been paid to those learning disability nurses known to have lost their lives to the COVID-19 virus. [ABSTRACT FROM AUTHOR]

The pressure imposed by COVID-19 on already overstretched and underfunded services has meant that third-year nursing students from all branches are being given the option to work as part of the 'nursing numbers' rather than in a supernumerary role. [ABSTRACT FROM AUTHOR]

Guidance on critical care during the COVID-19 pandemic has been updated over fears that people with learning disabilities could be denied intensive care. [ABSTRACT FROM AUTHOR]

Information about deaths from COVID-19 of people with learning disabilities must be released immediately, a nurse academic has said in a demand aimed at policymakers. [ABSTRACT FROM AUTHOR]

Calls for data to be published on the number of people with learning disabilities and autism who have died during the COVID-19 pandemic have been heard since leading nurse Irene Tuffrey-Wijne and others spoke out (page 6). [ABSTRACT FROM AUTHOR]

My son Jay has an intellectual disability, autism, cortical visual impairment and cerebral palsy. As a mother and an intellectual disability nursing student I am aware of how multiple disability diagnosis can limit social inclusion. His disabilities have left him isolated in life. [ABSTRACT FROM AUTHOR]

Joanna Owen and Liz Sayce unveil the results of the Disability Rights Commission's (DRC) 18-month formal investigation into the physical health inequalities experienced by people with learning disabilities and/or mental health problems. [ABSTRACT FROM AUTHOR]