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Abstract Background People with intellectual disabilities are less likely to have access to palliative care, and the evidence shows that their deaths are often unanticipated, unplanned for, and poorly managed. Within the general population, people from minoritised ethnic groups are under-represented within palliative care services. End-of-life care planning with people with intellectual disabilities from minoritised ethnic groups may be a way to address these issues. There is a huge gap in the evidence regarding intersectionality of intellectual disability and ethnicity within end-of-life care planning. This study explored the characteristics of effective and preferred end-of-life care planning approaches and resources for people with intellectual disabilities from minoritised ethnic groups. Methods Nine focus groups and three semi-structured individual interviews were held with 41 participants from minoritised ethnic groups (11 family carers; 25 support staff; and five people with intellectual disabilities). Session recordings were transcribed verbatim and analysed using the framework analytical approach. Results Participants thought that end-of-life care planning practices were dependent on the person’s culture, ethnicity, and religion, and that it was important to follow these at the end-of-life. They deemed it important to discover and respect (and not assume) the individual’s perspectives, values, needs, and wishes through a person-centred approach. Cultural attitudes to talking about death could hinder end-of-life care planning as participants perceived it as taboo. Disagreement was described as hindering end-of-life care planning, particularly when strong feelings about cultural and religious practices were involved. Staff highlighted the need for cultural and religious awareness, which could involve seeking information and receiving training. Opening the conversation about death and dying was seen as a potential facilitator for exploring end-of-life care planning. Conclusions The study was committed to addressing issues of equity, diversity, and inclusion. It is the first study to explore perspectives on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups. It was deemed important that staff did not assume but discovered and respected the views and preferences of people with intellectual disabilities regarding culture and religion. There is an urgent need for more research into end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups.

ABSTRACT Introduction There is growing recognition that healthcare inequalities faced by people with intellectual disabilities extend to their experiences at the end of life, resulting in calls for more inclusive research to help address these inequities. Our study aimed to address this through the co‐design of a toolkit for supporting end‐of‐life care planning with people with intellectual disabilities. To inform the co‐design process, we undertook an evidence review to identify existing tools, resources and approaches that were already being used in practice. Methods Our evidence review comprised three components: (i) a rapid scoping review of the academic literature, (ii) a desk‐based search of the grey literature and (iii) an online survey to capture unpublished resources that were distributed to services, professionals, third‐sector organisations and family members. A longlist of existing materials was appraised using an adapted version of the AGREE II instrument, resulting in a shortlist that was shared with the co‐design team. Results The evidence review played a critical role in the co‐design of a new toolkit of end‐of‐life care resources for people with intellectual disabilities. However, AGREE II proved to be limited for our purposes. Conclusions The survey was particularly useful in helping us identify resources, tools and approaches in current use. We identified evidence review processes that served to support co‐design team activities and elements that were more problematic. We argue that evidence review practices might be enhanced to better aid co‐design activities in health and care research, particularly for studies involving people with intellectual disabilities. Patient or Public Contribution This article reflects on an evidence review that was conducted as part of The Victoria and Stuart Project. People with intellectual disabilities were deeply involved at every stage of project design, delivery and dissemination. The project employed people with intellectual disabilities as members of the core research team. People with intellectual disabilities and family carers were members of the project co‐design team and the project Advisory Group. The evidence review process itself was led by academic members of the research team with contributions from colleagues with intellectual disabilities via the Advisory Group and core research team. The findings from the evidence review were used by the co‐design team to inform the development of an end‐of‐life care planning toolkit for people with intellectual disabilities.

ABSTRACT Introduction Support staff within social care settings have expressed a need for resources to facilitate end‐of‐life care planning with people with intellectual disabilities. This study aimed to co‐design a preliminary toolkit of end‐of‐life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities. Methods An adapted Experience‐Based Co‐Design process was applied to develop a toolkit for end‐of‐life care planning with people with intellectual disabilities. A co‐design group (the ‘All Together Group’) met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co‐facilitated the workshops), five family members, five intellectual disability support staff including two intellectual disability service managers, and five healthcare professionals. Results The All Together Group tested resources for and approaches to end‐of‐life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy‐read end‐of‐life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) ‘When I'm ill’ thinking cards; (ii) ‘Let's Talk About Funerals’ conversation‐starter pictures; and (iii) ‘My funeral’ planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end‐of‐life care planning with people with intellectual disabilities. Conclusion Through an iterative, flexible, inclusive, and comprehensive co‐design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end‐of‐life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online. Patient or Public Contribution The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.‐B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co‐design group as well. Two of these representatives were also co‐applicants in the overall project (N.P. and S.S.). The co‐design group included people with intellectual disabilities, families, intellectual disability support staff and health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations, and policymakers.

Background People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often maintain support due to dissatisfaction with services. This can lead to people moving from the family home in a crisis. Objectives (1) Find out what is known about health needs and resources for older people with learning disabilities (aged ≥ 40 years); (2) identify exemplars of good services for older people with learning disabilities; (3) explore service exemplars through ethnographic case studies; (4) evaluate support for older people with learning disabilities and their families through co-producing and testing future planning tools and (5) co-produce recommendations and resources. Design and methods Work package 1 rapid scoping reviews – three reviews focused on the health and social care needs of older people with learning disabilities and ‘behaviours that challenge others’, and family carers, and the co-ordination of support for this group. Work package 2 scoping and mapping exemplars of good practice – analysis of published service standards to assess excellence criteria, by mapping services, interviews (n = 30), survey (n = 9) and informal discussion with commissioners. Work package 3 ethnography of case studies of exemplar provision; independent supported living (n = 4); residential/nursing home (n = 2); day activities (n = 1), Shared Lives (n = 2). Fieldwork (20 days per model), interviews (n = 77) with older people with learning disabilities, family carers, support staff and commissioners. Work package 4 – co-producing and testing resources for older people with learning disabilities and their families involved interviews and focus groups with 36 people with learning disabilities, parents, and siblings, and experience-based co-design with 11 participants. Eight families evaluated the resources. Work package 5 – three stakeholder workshops co-produced service recommendations. Findings The reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and ‘behaviours that challenge others’. Criteria of excellence were produced, and a shortlist of 15 services was identified for consideration in work package 3. The ethnographic work found that environmental, organisational and social factors were important, including supporting independence and choice about who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In work package 4, we found that families were worried about the future and unsupported to explore options. ‘Planning Ahead’ cards and a booklet to record discussions were produced, and the evaluation was positively rated. Finally, formative discussion informed recommendations. Outputs include training packages, a carers’ forum, a film, a podcast and academic papers. Conclusions There is little focus on older people with learning disabilities and family carers. Services vary in their approach to planning for older-age support. Families are unsupported to plan, leaving people without choice. ‘Behaviours that challenge others’ was found to be unhelpful terminology. Recommendations: A new strategy is recommended for older people with learning disabilities and family carers that encompasses commissioning practices, professional input and peer learning, proactive support in ageing well and excellent service design. Limitations The COVID-19 pandemic created recruitment challenges. Reliance on providers for recruitment resulted in a lack of diversity in work package 3. Families’ plans, and therefore change, may be frustrated by insufficient service resources. Future work Given the lack of focus in this area, there is a range of future work to consider: experiences of older people with learning disabilities from diverse ethnic backgrounds; supporting people to age and die ‘in place’; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature; accessing mainstream support; and evaluation of the ‘Planning Ahead’ cards. Trial registration This trial is registered as ISRCTN74264887. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information. Plain language summary People with learning disabilities are living longer, but most live with their families, who are also getting older. This is because there are not enough suitable places for people with learning disabilities to live, and family carers worry that the person will not get the right support and have a good life. Our research aimed to improve support for people with learning disabilities and their family carers to plan ahead for a good life. We focused on people who are labelled with ‘behaviours that challenge others’. We read what has been written about this area. We looked for and found examples of excellent support for older people with learning disabilities. Researchers and people with learning disabilities and family carers spent time hanging out with people where they live or spend their days to see what support they get. Then we had three meetings with everyone involved and discussed our research findings with people with learning disabilities, family carers, and professionals. We found that people can be supported to live good lives as they grow older. This can be living alone or with people they choose, and it means having staff they like and who like them and being supported to be active. However, we found that ageing of people with learning disabilities is often ignored, and some people were not living good lives. We also found that the label of ‘behaviours that challenge others’ is unhelpful. We worked with people with learning disabilities and family carers to make a set of cards with pictures and questions to help people plan ahead for a good life. We produced resources and made recommendations to create a new plan for older people with learning disabilities to support people to lead good lives. This is very important because there is a lack of attention to and support for people with learning disabilities as they age. Scientific summary Background While a significant age gap remains in mortality between people with learning disabilities (PWLD) and the general population, more PWLD are growing older. Research shows that parents of PWLD are dissatisfied with social care services and concerned about the future of their adult child. Various policies aim to enable PWLD to live independently with support; however, family carers often maintain long-term care. This can generate a crisis for the PWLD, who may be moved to an alternative home that may not be appropriate for them. Our research focuses on PWLD aged ≥ 40 years in line with evidence that people may experience early onset of long-term conditions such as neurological, cardiovascular, respiratory and gastrointestinal disorders. Aim The aim was to improve support for family carers, older PWLD (aged ≥ 40 years) and ‘behaviours that challenge others’ (‘BTCO’) by producing effective recommendations and resources to support planning ahead for a good older age. Objectives Develop an understanding of what is known about the health needs, service interventions and resources for older PWLD, with a focus on those labelled with ‘BTCO’, and family carers [work package 1 (WP1)]. Identify exemplars of good practice in services in the UK for older PWLD, and their family and professional carers towards the end of life (WP2). Explore service exemplars through ethnographic case studies (WP3). Evaluate support for older PWLD and their families through the co-production and testing of decision aid tools to support future planning (WP4). Co-produce recommendations with PWLD, carers, providers, social workers and commissioners, and resources for older PWLD, family and support workers and social workers (WP5). Methods Work package 1: systematic scoping reviews Three rapid scoping reviews (RRs) focused on the health and social care needs of older PWLD and ‘BTCO’ (RR1), the health and social care needs of family carers of older PWLD and ‘BTCO’ (RR2), and how care can be best co-ordinated for older PWLD and ‘BTCO’ (RR3). Literature including research articles, reports, policy and practice guidance was included. RR1 and RR2 included UK-related evidence from 2001, and RR3 had no date restriction and was international in scope. Older PWLD were defined as those aged ≥ 40 years. ‘Family carers’ included parents and siblings. Care contexts encompassed any community living. We focused our search strategy on ‘challenging behaviour’, ‘ageing’ and ‘learning disability’. Data were extracted into a form and considered alongside non-research information and guidance relevant to older PWLD and ‘BTCO’, and their family carers. A narrative approach was combined with insights from the research team and Project Advisory Groups. A three-stage inductive process was applied: development of a coding framework; development of descriptive themes and subthemes; and development of analytical themes and subthemes. Database searches yielded 261 returns, and a subsequent extended search for RR1 yielded 355 returns; 9 papers were included. RR2 searches yielded 157 returns; 7 items were included. RR3 searches yielded 1449 returns, with 9 included. Work package 2: scoping and mapping exemplars of good practice in living arrangements in the community for older people with learning disabilities and ‘behaviour that challenges others’ Published service standards and grey literature of WP1 were analysed into themes supporting criteria to judge the excellence of services. Data from the mapping of services were subject to rapid analysis to refine the criteria, and further criteria were generated about participants’ relationships with services. A mapping exercise aimed to identify if services met the criteria for excellence. Multiple routes were used to identify the commissioning and provision of exemplar services and to find out key information about services using interviews (n = 30), an online survey (n = 9), websites and other documentary sources, including a search of Care Quality Commission (CQC) reports. Data generation produced descriptions of services and critiques of the criteria of excellence. Analysis involved coding and summarising information into a template including how the service met the criteria, the service model and who the services were provided to. The templates were presented to the research team and Advisory Groups for a final decision on the list of excellent services for WP3. Work package 3: ethnography of exemplar community living models Nine case studies of four models of provision: independent supported living (n = 4), residential nursing home (n = 2), living with family and using day activities (n = 1) and Shared Lives (n = 2). Shared Lives is a national scheme in which PWLD live as part of a family usually funded by the local authority (LA). Ethnographic fieldwork was conducted by academics and co-researchers with lived experience. Sites were dispersed across England. Researchers spent approximately 20 days within each model of care. Interviews were conducted with 95 PWLD including people who would be described by services as having severe learning disabilities and/or complex needs, family carers, support workers and managers, and commissioners. A thematic data analysis of observation notes, interview transcripts and policy documents was undertaken. Coding categories evolved iteratively. Mind maps and more conceptual analysis of meaning, action and process were used, capturing the micro-detail of participants’ lives. Co-researchers were involved in a section of analysis using audio and written extracts of data. The opening of a second residential nursing site selected during proposal development was delayed. Modified ethnographic data collection methods, including documentary analysis of planning meetings, interviews with the service development project manager, lead commissioner, a LA councillor, the chairperson of a parent carer group, and the co-design process, were considered in interviews and by observation. Work package 4: co-production and testing of resources for older people with learning disabilities and their families Co-design methods explored what approaches are considered appropriate by PWLD and family carers, and a set of resources for PWLD and families was co-produced. The team included a research assistant with learning disabilities. Thirty-six people (9 PWLD, 11 parents, 16 siblings) took part in interviews and focus groups using communication aids Books Beyond Words and Talking Mats™. Data were analysed using a Framework approach. An experience-based co-design approach was used to produce a decision-making resource. Twelve online sessions were held with 11 participants, including a core group of 4 PWLD and 4 parents, to develop the resources. A small-scale evaluation tested these with eight families across a 2-month period. This focused on the usefulness of the resource, the impact of planning actions and feedback for improvement. Data were collected twice using a questionnaire. Work package 5: methods This WP aimed to co-produce recommendations for commissioners and providers, resources for carers and PWLD, and online training materials for social workers and support staff. Participants in two co-design workshops (n = 45 and n = 30) shared initial findings and discussed developing recommendations. A third workshop (n = 22) focused on the developing recommendations, and research priority setting in the north of England. Participants included a wide range of stakeholders: PWLD and family carers, NHS England, NHS, the CQC, LA delegates, disability charity organisations, service providers, commissioners and academics. Findings Work package 1 Rapid review 1 generated four themes: transition over time, including proactive planning for circumstances in which PWLD are no longer able to remain in their home; avoiding the need for inappropriate transitions; making transition work; and an absence of targeted resources to support this. There is limited planning by ageing family carers and PWLD, and a need for professional involvement in supporting the family before ageing-related problems become manifest. Commissioners have a responsibility to proactively plan for the delivery of appropriate housing and support, requiring robust databases of ageing family carers and older PWLD. Rapid review 2 generated four themes: a lack of accessible advice, information and support for families to plan ahead; challenges facing family members with their own needs; the lack of availability of suitable housing and support; and lack of targeted resources to guide PWLD, family carers or professionals in planning ahead. Rapid review 3 identified three layers to co-ordinating care for older PWLD. For individuals this is communicating effectively and co-ordinating care to pre-empt the effects of ageing, delivered by skilled staff. At service level this is co-ordination across teams and services including housing, drawing on those with expertise in learning disabilities. At local/regional level, this is commissioning services taking account of current and future age-related needs. The reviews confirmed an inadequate evidence base concerning the experiences, needs and support of family carers of older PWLD, who are being supported when their family member’s preference is to remain at home and/or to achieve a potential move where appropriate and desired. WP1 also highlighted the conceptual limitations of the term ‘BTCO’. Work package 2 The final criteria of excellence were: personalisation, with goals, daily plans and activities shared and updated matching staff to people being supported personalised living space and choice around who this is shared with proactive, preventative health care involving primary care, and involvement of NHS multidisciplinary learning disability teams staff recruitment underpinned with the right values and skills high staff retention to provide continuity of care inclusive communication methods family involvement community engagement and inclusion trauma-informed services where appropriate good practices such as end-of-life care planning, dementia assessment and management embedded as routine commissioner endorsement of provider quality and resilience commissioners working with providers, PWLD and families in building capacity for future services. The mapping involved review of 330 potentially relevant locations, which was reduced to 74 after consideration of the relevance of the service to older PWLD. There was contact with around 260 people across England, which led to 89 contacts who provided information in formal interviews and informal discussions, via online meetings and by e-mail about at least one specific service, with around 3–6 provider and commissioner perspectives on the same services. A shortlist of 15 services was agreed for consideration in WP3. Work package 3 Findings were organised around environmental, organisational and social factors. Environmental factors supporting independence, and choice over who people interact with, were maximised for those living on their own or with people they chose to live with. Organisational factors related to systems that support good and consistent relationships with support staff, staff matching, aspirational support and adapting to changing needs as people age. Commissioners that actively plan for adapting care packages and contingency provision were seen to avoid crises. Planning for end-of-life care was not well supported by policies and practices except in the nursing home and one supported living provider. Shared Lives provision actively supported people who were developing dementia. Social factors included maintaining family and community relationships and being supported to do a range of activities. The label of ‘BTCO’ could be removed with consistently good support and environment. Poor practices of institutionalisation were observed, where staff schedules over-rode choice and/or duration of activities. Small providers that had strong values and management engagement with support workers were more able to offer consistently good support than larger organisations where excellent support can exist alongside examples of poor support. Observation of planning for a new nursing home offered useful insights into the challenges involved in growing capacity for local services for PWLD as they age, while adhering to models of excellent care. The research showed the extent to which independence, choice in relationships, support for healthy ageing, and meaningful activity including work was evidenced in different ways across providers, with some failing to achieve this despite the rhetoric and aspirations of providers and commissioners. Work package 4 Families were acutely aware of the need to plan ahead and were worried about the future, unaware of and unsupported to explore options. Co-design sessions stimulated ideas and discussion and the content and format of a decision-making resource was produced based on what worked for family carers and PWLD. This comprised a set of 102 ‘Planning Ahead’ cards and a ‘Me and my plans’ booklet in which families could record their discussions and plans. What participants wanted in their home reflected WP3 findings about the factors that enable excellence in care. They wanted to choose who they lived with; to be supported by people who know them well and care for them; to live in a location that suits their lives; and to have control over what they do and when. The lack of awareness of alternatives and absence of social work support was striking. In some cases, the lack of options led to parents ignoring the future, denying PWLD the opportunities to have lives that their peers without learning disabilities can have. Work package 5 Formative discussion across three stakeholder workshops informed the development of recommendations about how to raise awareness and improve access to information about planning and options. The workshops involved a range of stakeholders, and short films were used to present developing project analysis and raise key questions. Discussion focused on improved needs assessment data including for those not known to services; improved peer learning by providers and commissioners, and funding of self-advocacy groups to support people’s local decision-making; and improved individual support by matching staff to people and enabling staff to celebrate their successes. To support dissemination, a session plan was created in standard and Easy Read versions to enable self-advocacy groups to contribute to the development of practical recommendations for providers and commissioners. Resources Project outputs include two OpenLearn courses, one for practitioners and one for family carers; a training resource to support researchers, PWLD and family carers to work together as ethnographers; a resource for social workers hosted by the British Association of Social Workers; a carers’ forum hosted on Facebook; a short film; a podcast about the experience of taking part in the project; blogs; and a range of publications for non-academic audiences and academic papers. Limitations While a systematic approach was taken to reviews and mapping services, it is possible that some evidence was missed in WP1 and WP2. The COVID-19 pandemic created challenges for participant recruitment, and workarounds were needed. One ‘excellent’ site withdrew early in WP3 due to staffing issues caused by the pandemic. Reliance on providers for recruitment in WP3 resulted in a sample limited to White British participants. Participation may have influenced providers to present excellence and hide less good practice, but, given the mix of provision observed, this was a low risk. The discussion cards produced in WP4 may be in formats and have content that exclude some people. This needs to be tested further. Attempts to plan by families may be frustrated by insufficient resources and options to achieve what people want, raising expectations that cannot be met. Conclusions There is little research on older PWLD and family carers. Some participants were leading good lives in their own homes with excellent support from staff who knew them well. Even largely excellent services vary in their proactive approach to planning for older age support and end-of-life care. Families are often unsupported to plan ahead, and PWLD are by default left without choices about their future lives. The label ‘BCTO’ was found to be an unhelpful term that did not stimulate discussion of personalised care and rights to autonomy. It had little practical utility in the ethnographic research and was absent in the reviews. Research recommendations The over-riding recommendation is the urgent need for a new strategy for older PWLD and family carers that encompasses commissioning practices (including the sharing of best practice); professional input (roles and responsibilities, the role of social workers, support staff skills and training); proactive support to live and age well; and excellent service design (appropriate, sustainable, local and adaptable housing that enables people to age and die in place). Recommendations are made for improved proactive health care, organisational learning, matching and support for staff, and ‘try before you buy’ options to support choice and personalisation. Future work Given the lack of focus in this area, there is a range of future work to consider: experiences of older PWLD from diverse ethnic backgrounds; supporting people to age and die ‘in place’; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature and pet ownership; access to mainstream support; and evaluation of the ‘Planning Ahead’ cards. Trial registration This trial is registered as ISRCTN74264887. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information.

Abstract Background Older people with intellectual disabilities and their families report a lack of support for planning for parental death and transitions in care. This article aims to demonstrate the process of co‐designing resources to support older people with intellectual disabilities and their families to plan for the future. Methods Following interviews and focus groups with older people with intellectual disabilities and their families, we used an adapted experience‐based co‐design process to develop planning ahead resources. This included a ‘trigger film’ summarising findings from the earlier interview study, 12 co‐design workshops and a user feedback phase. Results The co‐design group developed a set of 102 ‘Planning Ahead Cards’ to help families to talk about the future and prepare for meetings with social care professionals. The group made decisions about the content, format and design of resources, and how co‐design workshops would run. The user feedback phase led to changes to the cards, and families and stakeholder groups suggested that they would be useful for planning ahead. Conclusion The Planning Ahead Cards may facilitate planning for parental death and transitions in care for older people with intellectual disabilities and their families. The co‐design approach was key to ensuring that the resources were useful and accessible for families. Patient or Public Contribution People with intellectual disabilities and their families contributed to the design of the resources through the co‐design workshops and feedback phase. The research team includes a research assistant with intellectual disabilities who co‐facilitated co‐design workshops and co‐authored this article.

Background: To our knowledge, there has yet to be a comprehensive review of how well hospital services are meeting the needs of children and young people (hereafter referred to as children) with learning disability and their families. The extent to which their experiences differ from those of parents of children without learning disability is not known. The views and experiences of children with learning disability are almost non-existent in the literature. Aims: To identify the cross-organisational, organisational and individual factors in NHS hospitals that facilitate and prevent children with learning disability and their families receiving equal access to high-quality care and services, and to develop guidance for NHS trusts. Design: A four-phase transformative, mixed-methods case study design comparing the experiences of children with and children without learning disability, their parents and health-care staff. Methods: Phase 1 comprised interviews with senior managers (n = 65), content analysis of hospital documents and a staff survey (n = 2261) across 24 hospitals in England, including all specialist children’s hospitals. Phases 2–4 involved seven of these hospitals. Phase 2 involved (a) interviews and photography with children and their parents (n = 63), alongside a parent hospital diary and record of safety concerns; (c) hospital staff interviews (n = 98) and community staff survey (n = 429); and (d) retrospective mapping of hospital activity. During phase 3, children (n = 803) and parents (n = 812) completed satisfaction surveys. Phase 4 involved seeking consultation on the findings. Data analysis: A model for mixed-methods data analysis and synthesis was used. Qualitative data were managed and analysed thematically, supported with NVivo (QSR International, Warrington, UK). Quantitative data were analysed using parametric and non-parametric descriptive statistics. Results: Nationally, there is considerable uncertainty within hospitals and variation between hospitals in terms of the policies, systems and practices in place specifically for children with learning disability. Staff are struggling to individualise care and are being let down by an inadequate system. Attitudes and assumptions can have a lasting impact on parents and children. The findings serve as a useful guide to trusts about how best to meet the Learning Disability Improvement standards that have been set. Conclusions: Safety issues and quality of care affect all children in acute hospitals and their parents, but the impact on children with learning disability and their parents is much greater. Individualising care is key. Our findings suggest that staff may need to undertake training and gain experience to build their skills and knowledge about children with learning disability generally, as well as generate knowledge about the individual child through proactively working in partnership with parents before their child’s admission. The findings also suggest that we may need to address the impact of children’s hospitalisation on parents’ health and well-being. Future work: The greatest need is for the development and validation of an instrument for the assessment and management of risk in children with learning disability in hospital. Limitations: We cannot say with certainty that the sites selected are representative of all services caring for children with learning disability. Study registration: The study has been registered on the National Institute for Health and Care Research (NIHR) Clinical Research Network portfolio as 20461 (phase 1) and 31336 (phases 2–4). Funding: This project was funded by the NIHR Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 13. See the NIHR Journals Library website for further project information.

Abstract Background In response to multiple United Kingdom investigations and inquiries into the care of adults with learning disabilities, Mencap produced the Getting it Right Charter which campaigned for the appointment of a Learning Disability Liaison Nurse in every hospital. More recent best practice guidelines from the Care Quality Commission included the need for all children’s units to have access to a senior learning disability nurse who can support staff and help them manage difficult situations. However, little evidence exists of the extent of learning disability nurse provision in children’s hospitals or the nature and impact of this role. Here we report selected findings from a national mixed methods study of hospital care for children and young people with and without learning disabilities in England. The extent of learning disability nurse provision in children’s hospitals is described and perceptions of staff working in hospitals with and without such provision is compared. Methods Semi-structured interviews were conducted with senior staff across 15 children’s hospitals and an anonymous survey was sent to clinical and non-clinical staff with patient (children and young people) contact within these hospitals. The survey focused on six different elements of care for those with and without learning disability, with additional questions concerning identifying and tracking those with learning disabilities and two open-ended questions. Results Forty-eight senior staff took part in interviews, which included a subset of nine nurses and one allied health professional employed in a dedicted learning disability nurse role, or similar. Surveys were completed by 1681, of whom 752 worked in a hospital with dedicated learning disability nurse provision. We found evidence of limited and varied learning disability nurse provision which was valued by hospital staff and shown to positively impact their perceptions of being capable to care for children and young people with learning disabilities, but not shown to increase staff perceptions of capacity or confidence, or how children and young people are valued within the hospital, their safety or access to appointments. Conclusion Further consideration must be given to how learning disability nurse roles within children’s hospitals are best operationalised in practice to have the greatest impact on staff and families, as well as how we monitor and evaluate them to ensure they are being utilised effectively and efficiently. Trial registration The study has been registered on the NIHR CRN portfolio 20,461 (Phase 1), 31,336 (Phases 2–4).

Abstract Background Children and young people (CYP) with learning disabilities (LD) are a vulnerable population with increased risk of abuse and accidental injury and whose parents have reported concerns about the quality, safety and accessibility of their hospital care. The Care Quality Commission’s (CQC) view of best practice for this group of patients includes: access to senior LD nurse provision; a clearly visible flagging system for identifying them; the use of hospital passports; and defined communication strategies (Glasper, Comp Child Adolesc Nurs 40:63-67, 2017). What remains unclear is whether these recommendations are being applied and if so, what difference they are making. Furthermore, what we do not know is whether parental concerns of CYP with LD differ from parents of other children with long-term conditions. The aims of this study were to 1) describe the organisational context for healthcare delivery to CYP with LD and their families and 2) compare staff perceptions of their ability to identify the needs of CYP with and without LD and their families and provide high quality care to effectively meet these needs. Methods Individual interviews (n = 65) and anonymised online survey (n = 2261) were conducted with hospital staff working with CYP in 15 children’s and 9 non-children’s hospitals in England. The majority of interviews were conducted over the telephone and recorded and transcribed verbatim. Health Research Authority was obtained and verbal or written consent for data collection was obtained from all interview participants. Results The nature and extent of organisational policies, systems and practices in place within hospitals to support the care of CYP with LD differs across England and some uncertainty exists within and across hospitals as to what is currently available and accessed. Staff perceived that those with LD were included less, valued less, and less safe than CYP without LD. They also reported having less confidence, capability and capacity to meet the needs of this population compared to those without LD. Conclusion Findings indicate inequality with regards the provision of high quality hospital care to children and young people with LD that meets their needs. There is a pressing need to understand the impact this has on them and their families. Trial registration The study has been registered on the NIHR CRN portfolio 20461 (Phase 1), 31336 (Phases 2-4).

Abstract Background Euthanasia and assisted suicide (EAS) have been legally possible in the Netherlands since 2001, provided that statutory due care criteria are met, including: (a) voluntary and well-considered request; (b) unbearable suffering without prospect of improvement; (c) informing the patient; (d) lack of a reasonable alternative; (e) independent second physician’s opinion. ‘Unbearable suffering’ must have a medical basis, either somatic or psychiatric, but there is no requirement of limited life expectancy. All EAS cases must be reported and are scrutinised by regional review committees (RTE). The purpose of this study was to investigate whether any particular difficulties arise when the EAS due care criteria are applied to patients with an intellectual disability and/or autism spectrum disorder. Methods The 416 case summaries available on the RTE website (2012–2016) were searched for intellectual disability (6) and autism spectrum disorder (3). Direct content analysis was used on these nine cases. Results Assessment of decisional capacity was mentioned in eight cases, but few details given; in two cases, there had been uncertainty or disagreement about capacity. Two patients had progressive somatic conditions. For most, suffering was due to an inability to cope with changing circumstances or increasing dependency; in several cases, suffering was described in terms of characteristics of living with an autism spectrum disorder, rather than an acquired medical condition. Some physicians struggled to understand the patient’s perspective. Treatment refusal was a common theme, leading physicians to conclude that EAS was the only remaining option. There was a lack of detail on social circumstances and how patients were informed about their prognosis. Conclusions Autonomy and decisional capacity are highly complex for patients with intellectual disabilities and difficult to assess; capacity tests in these cases did not appear sufficiently stringent. Assessment of suffering is particularly difficult for patients who have experienced life-long disability. The sometimes brief time frames and limited number of physician-patient meetings may not be sufficient to make a decision as serious as EAS. The Dutch EAS due care criteria are not easily applied to people with intellectual disabilities and/or autism spectrum disorder, and do not appear to act as adequate safeguards.

Background: Increasing numbers of older adults with intellectual disabilities are living with ageing parents. These families need support to plan for the future to avoid crisis interventions following parental death. Method: Interviews and focus groups were conducted with people with intellectual disabilities (aged 40+) (N = 9), parents (N = 11) and siblings (N = 16) to understand their perspectives about living with parents and future planning. Data were analysed using framework analysis. Results: Four themes were identified: 'What matters to me', 'When should we plan', 'What are the options' and 'Who will help'. Participants knew they needed to make plans but did not feel supported to do so. While they viewed moving as an opportunity for independence, they feared there were no viable alternatives. Conclusion: Person-centred resources and support are needed for families to plan for transitions in care, including proactive approaches from social services and help to prepare for conversations with social care professionals.