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Aim: This article explores ways of maximising engagement of intellectual disability staff as research participants, research advisers and research implementers. Method: The authors describe and reflect on a three-phased strategy in recruiting front-line staff ( n = 690) working for intellectual disability service providers ( n = 25) to participate in a UK-wide anonymous online survey about death, dying and bereavement. Results: Important elements in engaging participants were: involving stakeholders at all stages of the research process, which includes: building relationships with participating organisations; enlisting organisational management support at all levels; an attractive and well laid-out collection tool; a well-structured recruitment strategy; time and flexibility; and a varied and targeted dissemination strategy. However, the recruitment method had limitations, in particular around representativeness, bias and generalisability. Conclusions: Staff in intellectual disability services can be enthusiastic and invaluable research participants. Active engagement between researchers, participating organisations and stakeholder groups is key to ensuring involvement of intellectual disability staff with research.

Shared decision-making (SDM) is the process in which healthcare professionals and patients jointly discuss and decide which care and treatment policy is to be followed. The importance of SDM is increasingly being recognised across health settings, including palliative care. Little is known about SDM with people with intellectual disabilities (IDs) in the last phase of life. This review aimed to explore to which extent and in which way people with ID in the last phase of life are involved in decision-making about their care and treatment. In this scoping review, we systematically searched in the Embase, Medline and PsycINFO databases for empirical studies on decision-making with people with ID in the last phase of life. Of a total of 281 identified titles and abstracts, 10 studies fulfilled the inclusion criteria. All focused on medical end-of-life decisions, such as foregoing life-sustaining treatment, do-not-attempt-resuscitation orders or palliative sedation. All studies emphasise the relevance of involving people with ID themselves, or at least their relatives, in making decisions at the end of life. Still, only two papers described processes of decision-making in which persons with ID actively participated. Furthermore, in only one paper, best practices and guidelines for decision-making in palliative care for people with ID were defined. Although the importance of involving people with ID in the decision-making process is emphasised, best practices or guidelines about what this should look like are lacking. We recommend developing aids that specifically support SDM with people with ID in the last phase of life.

Supplemental Digital Content is available in the text., IMPORTANCE: A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 is hypothesized to play a role in the pathogenesis of invasive infection, but studies in sepsis are lacking. OBJECTIVES: To study A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 protein level in pediatric sepsis and to study the association with outcome. DESIGN: Data from two prospective cohort studies. SETTING AND PARTICIPANTS: Cohort 1 is from a single-center study involving children admitted to PICU with meningococcal sepsis (samples obtained at three time points). Cohort 2 includes patients from a multicenter study involving children admitted to the hospital with invasive bacterial infections of differing etiologies (samples obtained within 48 hr after hospital admission). MAIN OUTCOMES AND MEASURES: Primary outcome measure was mortality. Secondary outcome measures were PICU-free days at day 28 and hospital length of stay. RESULTS: In cohort 1 (n = 59), nonsurvivors more frequently had A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 levels above the detection limit than survivors at admission to PICU (8/11 [73%] and 6/23 [26%], respectively; p = 0.02) and at t = 24 hours (2/3 [67%] and 3/37 [8%], respectively; p = 0.04). In cohort 2 (n = 240), A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 levels in patients within 48 hours after hospital admission were more frequently above the detection limit than in healthy controls (110/240 [46%] and 14/64 [22%], respectively; p = 0.001). Nonsurvivors more often had detectable A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 levels than survivors (16/21 [76%] and 94/219 [43%], respectively; p = 0.003), which was mostly attributable to patients with Neisseria meningitidis. CONCLUSIONS AND RELEVANCE: In children with bacterial infection, detection of A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 within 48 hours after hospital admission is associated with death, particularly in meningococcal sepsis. Future studies should confirm the prognostic value of A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 and should study pathophysiologic mechanisms.

Background: \ud People with intellectual disabilities are more likely to experience sleep problems. Sleep can impact on health and well-being; therefore evidence-based interventions are required to improve sleep in this population.\ud Method: \ud An integrative literature review was conducted on the impact of nutrition on sleep in people with intellectual disabilities. Following screening of papers (n=289), fourteen papers met the inclusion criteria.\ud Results: \ud Themes related to nutrition and improved overall wellbeing, use of nutritional supplements, specific foods, links to health comorbidities and food fussiness.\ud Conclusion: \ud This is the first comprehensive review completed on nutritional interventions to improve sleep in people with intellectual disabilities. Dietary patterns may be an important factor to improving the quality and quantity of sleep. However, the current literature regarding the benefit of improved nutrition on sleep in people with an intellectual disability needs to be interpreted with caution.

In 2018, the authors published their analysis of nine online case reports by the Euthanasia Review Committee in the Netherlands, involving people with intellectual disability and/or autism spectrum disorder who were given euthanasia. In this commentary, they reflect further on the challenges of assessing "unbearable suffering without prospect of improvement," which is one of the Dutch legal due care criteria. Two more recent case reports are presented in detail, where doctors struggled to assess and sometimes came to divergent conclusions. In both cases, limitations resulting from the intellectual disability and autism spectrum disorder were seen by physicians as causes of unbearable suffering, leading them to agreeing to the patient's euthanasia request. The authors discuss their concern about the implications of accepting the effects of lifelong disability as reasons for euthanasia, not only for individuals but for society as a whole.

Background: People with an intellectual disability experience significant inequalities in end-of-life and palliative care provision. Aims: To identify the key characteristics of practice initiatives and case reports that have won a UK award for the outstanding provision of end-of-life care for people with ID (2008–2018). Methods: Thematic content analysis of the written nominations for award winners and those highly commended (n=25). Findings: Four themes were identified: (1) Good practice was dependent on ‘champions’ with drive, enthusiasm and determination, supported by committed organisations and managers. (2) Collaboration was essential, including collaboration with families. (3) Care was highly individualised, putting the person's story at the centre. (4) There was a focus on staff training and use of specifically designed or adapted tools. Conclusion: The good practice examples are encouraging. Focus is now needed on ensuring that good practice is sustained, replicated and embedded within policies and organisational cultures. Currently, it remains over-dependent on committed individuals within organisations.

Background: There is evidence that people with intellectual disabilities experience healthcare inequalities, including access to specialist palliative care, but to date, there has not been a systematic review of empirical evidence. Aim: To identify the palliative care needs of adults with intellectual disabilities and the barriers and facilitators they face in accessing palliative care. Design: Systematic review using a narrative synthesis approach (International prospective register of systematic reviews (PROSPERO) registration number: CRD42019138974). Data sources: Five databases were searched in June 2019 (MEDLINE, Embase, PsycINFO, the Cochrane library and CINAHL) along with hand searches and a search of the grey literature. All study designs were included. Results: A total of 52 studies were identified, all of which were conducted in high-income countries, the majority in the United Kingdom ( n = 28). From a total of 2970 participants across all studies, only 1% were people with intellectual disabilities and 1.3% were family members; the majority (97%) were health/social care professionals. Identified needs included physical needs, psychosocial and spiritual needs, and information and communication needs. Barriers and facilitators were associated with education (e.g. staff knowledge, training and experience), communication (e.g. staff skill in assessing and addressing needs of people with communication difficulties), collaboration (e.g. importance of sustained multidisciplinary approach) and health and social care delivery (e.g. staffing levels, funding and management support). Conclusion: This review highlights the specific problems in providing equitable palliative care for adults with intellectual disabilities, but there is a lack of research into strategies to improve practice. This should be prioritised using methods that include people with intellectual disabilities and families.

Study objectives Obstructive sleep apnea (OSA) is common in children with Down syndrome (DS) and is associated with adverse health and cognitive outcomes. Daytime clinical assessment is poorly predictive of OSA, so regular screening with sleep studies is recommended. However, sleep studies are costly and not available to all children worldwide. We aimed to evaluate the psychometric properties and predictive value of a newly developed screening questionnaire for OSA in this population. Methods 202 children aged 6 months to 6th birthday with DS were recruited, of whom 188 completed cardio-respiratory sleep studies to generate an obstructive apnea hypopnea index (OAHI). Parents completed the 14-item Down syndrome OSA screening questionnaire. Responses were screened, a factor analysis undertaken, internal consistency calculated and receiver operator characteristic (ROC) curves drawn to generate an area under the curve (AUC) to assess criterion related validity. Results Of 188 children who completed cardiorespiratory sleep studies; parents completed the screening questionnaire for 186. Of this study population 15.4% had moderate to severe OSA defined by an OAHI of ≥5/h. Sixty-three (33.9%) participants were excluded due to "unsure" responses or where questions were not answered. Using the remaining 123 questionnaires a four-factor solution was found, with the 1st factor representing breathing related symptoms, explaining a high proportion of the variance. Internal consistency was acceptable with a Cronbach alpha of 0.87. ROC curves for the total score generated an AUC statistic of 0.497 and for the breathing subscale an AUC of 0.603 for moderate to severe OSA. Conclusion A well designed questionnaire with good psychometric properties had limited predictive value to screen for moderate to severe OSA in young children with DS. The use of a screening questionnaire is not recommended. Screening for OSA in this population requires objective sleep study measures.

The research about understanding the end of life and decision-making by people with intellectual disability is in its infancy. There are many unknowns, limited by the available empirical research. In this chapter we report the evidence combined with best clinical practice. The chapter focuses on end of life in older age where the person has time to make choices. We do not address the tragedy of sudden and unexpected death, wherein there has been no or little time to make decisions. Emphasis is given to how families, carers and professionals (We use the term “caregivers” throughout the chapter as the collective term to include families, carers and professionals, unless otherwise specified.) can ensure that the person with intellectual disability is central in end-of-life decision-making and can meaningfully participate in end-of-life care planning.

Background In northern Nigeria, UNICEF has supported introduction of a short message service (SMS) system for data transmission in the Community-based Management of Acute Malnutrition (CMAM) programme. The SMS system operates in parallel to the traditional paper-based system, and weekly data are transmitted directly from the health facilities to the federal level. For the paper system, monthly data summaries are passed through all levels of government. We assessed the data quality and performance of both CMAM information systems. Methods We undertook a contextualised study in one state in north-west Nigeria, with additional analysis of secondary data from five states. Fieldwork methods included: observation of the data system in nine selected facilities in three local government areas; recounting of data for admissions, exits, and ready-to-use therapeutic food (RUTF) utilisation; and interviews with health workers and government officials. Results While the small number of facilities does not enable robust generalisation of the quantitative findings, the strengths and weaknesses detected pertain to the whole programme, as they relate to how the system was designed and is operated. We found that the accuracy and reliability of CMAM data were deficient to a similar extent in the paper-based and SMS systems. For the audited month, we found large discrepancies between recounted data and paper records in regard to admissions, exits and RUTF cartons consumed in the majority of facilities visited. There was also a large discrepancy in the reported percentage of “deaths or defaulters” (6.5%) compared to 22% based on a recount of outpatient cards. Errors are mainly introduced during data collection and when completing tallies at facility level. Conclusion Our findings indicate the need for improvements in the design of the monitoring system, training and supervision of data management, and communication of results; as well as clear evidence on how measures to improve data quality may affect performance of individual CMAM clinics. The CMAM default and death rates currently reported in Nigeria are likely to be under-estimates, and therefore provide a misleadingly good impression of CMAM programme performance.

Background Many people with intellectual disabilities are affected by death, yet conversations about death are often avoided by staff working with them. This study aimed to assess staff training needs and to develop, trial and evaluate a training course on communicating about death and dying. Method (i) Semi-structured interviews with 20 staff in residential/supported living services to establish training needs; (ii) three-one-day courses were attended by 114 staff and evaluated through questionnaires. The course consisted of World Cafe sessions, presentations and feedback by people with intellectual disabilities, and an expert teaching session. Results Staff fear, cultural influences and inexperience with death-related conversations were major communication barriers. Evaluation of the course was overwhelmingly positive. Conclusions Intellectual disabilities services must have clear staff training strategies around death, dying and communication. More work is needed to assess the resource implications and impact on practice of different training methods and other support strategies.

Background Most staff working in intellectual disability services will be confronted with people with intellectual disabilities who need support around death, dying and bereavement. Previous studies suggest that intellectual disability staff tend to protect clients from knowing about death and avoid communication about death. The aims of this study were to gain further insight into the individual, organisational and contextual factors that affect the communication of death-related bad news to people with intellectual disabilities by intellectual disability staff and to develop guidelines for services to enable appropriate communication with clients about death and dying. Method Semi-structured interviews were held with 20 social care staff working in intellectual disability residential or supported living services in London, who had supported a client affected by death-related bad news in the past 6 months. Results Staff found supporting people with intellectual disabilities around death and dying extremely difficult and tended to avoid communication about death. The following factors had a particularly strong influence on staff practice around communicating death-related bad news: fear and distress around death; life and work experience; and organisational culture. Staff attitudes to death communication had a stronger influence than their client's level of cognitive or communicative abilities. Managers were important role models. Conclusions Service managers should ensure not only that all their staff receive training in death, loss and communication but also that staff are enabled to reflect on their practice, through emotional support, supervision and team discussions. Future work should focus on the development and testing of strategies to enable intellectual disability staff to support their clients in the areas of dying, death and bereavement.

Background Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement. Method Staff who support people with intellectual disability in the UK (n = 690) completed an electronic survey. Detailed data were obtained from staff where a client had died in the past 12 months (n = 111), was terminally ill (n = 41) or had been bereaved (n = 200). Analysis included descriptive and chi-squared statistics. Results 52.6% of people with intellectual disability who were terminally ill were told about their illness, and 18.1% were told they would die. Of those experiencing an anticipated bereavement, 32.4% of staff said no one talked about this with them beforehand. A quarter of staff had received training on end of life or bereavement. Conclusion Death affects many people with intellectual disability. Staff require training and support in communicating death.

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).

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs. Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe. Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version. Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks. Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted. Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.

Little is known about the involvement of nurses in the process of making end-of-life decisions for people with intellectual disability (ID). The aim of this study was to clarify this process from the perspective of nurses. This qualitative study involved nine semistructured interviews with nurses working in chronic care, conducted after the deaths of patients with ID in the Netherlands. The interviews were transcribed verbatim and analyzed using Grounded Theory procedures. The core characteristic of the position of the nurses and of the way they supported the patient was Being at the center of communication. Related categories of topics emerging from the interviews were Having a complete picture of the patient, Balancing involvement and distance, Confidence in one's own opinion, and Knowledge about one's own responsibility, all of which were focused on the patient. This focus on the patient with ID might explain why the nurses could make valuable contributions to such an important subject as end-of-life decisions. People with ID themselves were not involved in the decisions. The nurses were not always aware who was ultimately responsible for the end-of-life decisions. Nurses are in a unique position to support the process of end-of-life decision-making. It is important to use their knowledge and give them a more prominent position in this decision-making process. It should be clear to all involved who is ultimately responsible for making the end-of-life decisions.

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. Electronic supplementary material The online version of this article (10.1186/s12910-018-0257-6) contains supplementary material, which is available to authorized users.

Background Sepsis and severe focal infections represent a substantial disease burden in children admitted to hospital. We aimed to understand the burden of disease and outcomes in children with life-threatening bacterial infections in Europe. Methods The European Union Childhood Life-threatening Infectious Disease Study (EUCLIDS) was a prospective, multicentre, cohort study done in six countries in Europe. Patients aged 1 month to 18 years with sepsis (or suspected sepsis) or severe focal infections, admitted to 98 participating hospitals in the UK, Austria, Germany, Lithuania, Spain, and the Netherlands were prospectively recruited between July 1, 2012, and Dec 31, 2015. To assess disease burden and outcomes, we collected demographic and clinical data using a secured web-based platform and obtained microbiological data using locally available clinical diagnostic procedures. Findings 2844 patients were recruited and included in the analysis. 1512 (53·2%) of 2841 patients were male and median age was 39·1 months (IQR 12·4–93·9). 1229 (43·2%) patients had sepsis and 1615 (56·8%) had severe focal infections. Patients diagnosed with sepsis had a median age of 27·6 months (IQR 9·0–80·2), whereas those diagnosed with severe focal infections had a median age of 46·5 months (15·8–100·4; pInterpretation Mortality in children admitted to hospital for sepsis or severe focal infections is low in Europe. The disease burden is mainly in children younger than 5 years and is largely due to vaccine-preventable meningococcal and pneumococcal infections. Despite the availability and application of clinical procedures for microbiological diagnosis, the causative organism remained unidentified in approximately 50% of patients.

BREAKING BAD news to someone with a learning disability is never easy. Add dementia to the mix and the challenge may seem insurmountable. In-depth studies of the experiences of people with learning disabilities who had cancer and those with dementia showed that breaking bad news and giving explanations about the illness to them was a major concern for all those involved (Tuffrey-Wijne et al 2010, Watchman 2014). Staff and families worry about how much people with learning disabilities understand and how much explanation they should be given.Alamy People with learning disabilities continue to be protected from all kinds of bad news (Bernal and Tuffrey-Wijne 2008, McEnhill 2008) and difficulties remain in sharing a diagnosis of dementia even if everyone agrees that it should be discussed with the ill person. There are concerns that the person will not be able to understand, or that the news will be too upsetting. Sometimes the family opposes disclosure, or it may simply be that nobody feels they have the skills to break bad news. However, there is evidence that people with learning disabilities cope better with difficult situations, such as illness, loss and bereavement, if they understand them (Blackman 2003, Tuffrey-Wijne et al 2013). Bad news usually means that someone’s life is changing in some way, and people need help to understand these changes in their lives. In this article, we aim to provide some guidance in helping someone with learning disabilities understand that they have dementia and the implications of this diagnosis. We start from the premise that people with learning disabilities receive some support, and that it is provided with due consideration for individual needs and preferences, which could include the need or preference not to know. We will explain new Abstract

Background: Empirical knowledge around palliative care provision and needs of people with intellectual disabilities is extremely limited, as is the availability of research resources, including expertise and funding. This paper describes a consultation process that sought to develop an agenda for research priorities for palliative care of people with intellectual disabilities in Europe. Methods: A two-day workshop was convened, attended by 16 academics and clinicians in the field of palliative care and intellectual disability from six European countries. The first day consisted of round-table presentations and discussions about the current state of the art, research challenges and knowledge gaps. The second day was focused on developing consensus research priorities with 12 of the workshop participants using nominal group technique, a structured method which involved generating a list of research priorities and ranking them in order of importance. Results: A total of 40 research priorities were proposed and collapsed into eleven research themes. The four most important research themes were: investigating issues around end of life decision making; mapping the scale and scope of the issue; investigating the quality of palliative care for people with intellectual disabilities, including the challenges in achieving best practice; and developing outcome measures and instruments for palliative care of people with intellectual disabilities. Conclusions: The proposal of four major priority areas and a range of minor themes for future research in intellectual disability, death, dying and palliative care will help researchers to focus limited resources and research expertise on areas where it is most needed and support the building of collaborations. The next steps are to cross-validate these research priorities with people with intellectual disabilities, carers, clinicians, researchers and other stakeholders across Europe; to validate them with local and national policy makers to determine how they could best be incorporated in policy and programmes; and to translate them into actual research studies by setting up European collaborations for specific studies that require such collaboration, develop research proposals and attract research funding., BMC Palliative Care, 15, ISSN:1472-684X

Introduction Despite evidence of health inequalities for adults with intellectual disability (ID) there has yet to be a comprehensive review of how well hospital services are meeting the needs of children and young people (CYP) with ID and their families. We do not know how relevant existing recommendations and guidelines are to CYP, whether these are being applied in the paediatric setting or what difference they are making. Evidence of parental dissatisfaction with the quality, safety and accessibility of hospital care for CYP with ID exists. However, the extent to which their experience differs from parents of CYP without ID is not known and the views and experiences of CYP with ID have not been investigated. We will compare how services are delivered to, and experienced by CYP aged 5–15 years with and without ID and their families to see what inequalities exist, for whom, why and under what circumstances. Methods and analysis We will use a transformative, mixed methods case study design to collect data over four consecutive phases. We will involve CYP, parents and hospital staff using a range of methods; interviews, parental electronic diary, hospital and community staff questionnaire, patient and parent satisfaction questionnaire, content analysis of hospital documents and a retrospective mapping of patient hospital activity. Qualitative data will be managed and analysed using NVivo and quantitative data will be analysed using parametric and non-parametric descriptive statistics. Ethics and dissemination The study will run from December 2015 to November 2018. We have Health Authority Approval (IRAS project ID: 193932) for phase 1 involving staff only and ethical and Health Authority Approval for phases 2–4 (IRAS project ID: 178525). We will disseminate widely to relevant stakeholders, using a range of accessible formats, including social media. We will publish in international peer-reviewed journals and present to professional, academic and lay audiences through national and international conferences.

Background: Not much is known about the process of end-of-life decision-making for people with intellectual disabilities. Aim: To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives. Design: A qualitative study based on semi-structured interviews, recorded digitally and transcribed verbatim. Data were analysed using Grounded Theory procedures. Participants: We interviewed 16 patient representatives after the deaths of 10 people with intellectual disabilities in the Netherlands. Results: The core category ‘Deciding for someone else’ describes the context in which patient representatives took end-of-life decisions. The patient representatives felt highly responsible for the outcomes. They had not involved the patients in the end-of-life decision-making process, nor any professionals other than the doctor. The categories of ‘Motives’ and ‘Support’ were connected to the core category of ‘Deciding for someone else’. ‘Motives’ refers to the patient representatives’ ideas about quality of life, prevention from suffering, patients who cannot understand the burden of interventions and emotional reasons reported by patient representatives. ‘Support’ refers to the support that patient representatives wanted the doctors to give to them in the decision-making process. Conclusions: From the perspective of the patient representatives, the process of end-of-life decision-making can be improved by ensuring clear roles and an explicit description of the tasks and responsibilities of all participants. Regular discussion between everyone involved including people with intellectual disabilities themselves can improve knowledge about each other’s motives for end-of-decisions and can clarify expectations towards each other.

Objectives: To develop a model for breaking bad news that meets the needs of people with intellectual disabilities (IDs). Design: A two-phase qualitative study featuring: (I) focus group meetings, on-line focus groups and one-to-one interviews; (II) structured feedback from participants and other stakeholders. Setting: Participants were drawn from National Health Service hospitals, Primary Care Trusts, independent organisations and on-line forums across England. Participants: 109 participants were purposively selected: 21 people with mild/moderate IDs, 28 family carers, 26 ID professionals and 34 general health professionals. Outcome measure: Feedback on a preliminary model for breaking bad news to people with IDs was collected from 60 participants and other stakeholders to assess relevance and acceptability, before the model was finalised. Results: Breaking bad news is best seen as a process, not an event or a linear series of events. Bad news situations usually constitute a wide range of discrete items or chunks of information. ‘Building a foundation of knowledge’ is central to the model. Information needs to be broken down into singular chunks of knowledge that can be added over time to people’s existing framework of knowledge. Three other aspects should be considered at all times: capacity, people and support. Conclusions: Patients who have IDs do not easily process verbal information in a clinical setting. The new model for breaking bad news to people with IDs needs to be tested in practice using robust outcome measures. The model’s relevance to wider patient groups should also be evaluated.

Obstructive sleep apnoea is a condition which affects an estimated 50% of children with Down syndrome, particularly in their early years. It can cause serious sequelae in affected children but may not be recognised by parents or health professionals. Routine screening has been recommended in some countries but is not standard practice. There are no validated questionnaire based tools available to screen this population of children for this particular sleep-related disorder. Using existing validated sleep questionnaire items, we have developed a questionnaire to screen children with Down syndrome up to 6 years of age for obstructive sleep apnoea, which corresponds with the recommendations made in UK national guidelines. This paper describes these first steps in demonstrating content validity for a new questionnaire which will be subject to further in-depth psychometric analysis. Relevance, clarity and age-appropriateness was rated for 33 items using a content review questionnaire by a group of 18 health professionals with expertise in respiratory paediatrics, neurodevelopmental paediatrics and sleep physiology. The content validity index was calculated for individual items and contributed to decisions about item inclusion. Scale level content validity index for the modified questionnaire of 14 items was at an accepted level of 0.78. Two parents of children with Down syndrome took part in cognitive interviews after completing the modified questionnaire. We describe the development of this 14 item questionnaire to screen for OSA in children with DS from infancy to 6 years.

Since September 2008 in the UK, immunisation against human papillomavirus (HPV) has been routinely offered to all girls aged 12–13 years as part of the childhood immunisation programme. It has been shown in previous research, that children attending schools for children and young people with intellectual disability are less likely to receive routine vaccines compared with non-disabled peers.1 Unpublished data from an audit carried out in the Portsmouth district suggests similar issues for HPV vaccination. This paper looks at what we know about HPV infection and the risks to individuals with intellectual disability, as well as why immunisation rates may be lower and what we should do about this. There has been no research published which looks specifically at HPV vaccination rates in disabled girls and we are not aware of any routine collection of such data. A recent study from Bristol2 showed that rates in young women in non-mainstream educational settings were significantly lower than those in mainstream schools. This was a heterogeneous group, however, with schools for young people with ‘significant additional needs’ combined with pupil referral units, young offender units, hospital schools and home-educated girls. Research in other disadvantaged groups has shown in some populations that HPV vaccination rates are significantly lower in communities with high social deprivation3 and among ethnic minority girls,2 ,3 girls of travelling families, ‘Looked after Children’, some religious groups and girls who are not in school.4 Our own local unpublished data showed uptake in girls in local schools for moderate or severe intellectual disabilities in 2010–2011 was significantly lower than that compared with girls in a local mainstream school (77% vs 93%) although socioeconomic status and ethnicity were not controlled for. Anecdotal reports from local school nurses indicate that obtaining truly informed consent for the vaccine from …

Purpose : Growing numbers of people with intellectual disabilities are diagnosed with a life-limiting illness such as cancer. Little is known about disclosure of diagnosis and prognosis to this group. The study aim was to explore how much people with intellectual disabilities who have cancer understand about their diagnosis and prognosis, and to explore how much they are told about their cancer. Method : 13 people with intellectual disabilities and cancer took part in a 3-year ethnographic study. Data collection consisted mostly of participant observation. Participants were visited regularly for a median of 7 months. Results : Eleven participants were told that they had cancer, but most were not helped to understand the implications of this diagnosis or their prognosis. Decisions around disclosure, as well as the task of truth-telling, rested mostly with relatives and paid carers. Those with severe/profound intellectual disabilities were most likely to be protected from the truth. Understanding was affected by cognitive ability, life experience and truth-telling. Lack of understanding affected the ability to take decisions about treatment and care. Conclusions : Existing models for breaking bad news are inadequate for people with intellectual disabilities. The findings suggest that more open communication is needed, but further studies are needed to establish best practice in this area.

Research into the health of people with intellectual disabilities has increasingly focused on the occurrence of cancer in this population. Information on the incidence and prevalence of cancer is reviewed in both institutional and community settings. Examples of environmental causation are considered including Helicobacter pylori. Gender-specific issues are considered with respect to both women and men, and screening services discussed. The overall issue of timely diagnosis of cancer in members of this population is reviewed with special reference to avoidable deaths. The need for methodologically sound studies to clarify the epidemiology of cancer in people with intellectual disabilities is discussed.

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

Accessible summary • This is the story of John Davies. John has learning disabilities. He has cancer. He tells his story in his own words. • John found a lump on his penis (willie). It was cancer. He didn't go to the doctor. He left it too late. Now he is very ill with cancer. Maybe he will die of it. If he had gone to the doctor sooner, he could have got better. • This is what John is telling you: If you find something wrong with you, you should tell someone. You should go to the doctor. • We are doing a study. We want to find out what it is like to have cancer. We want to find out what helps people who have cancer. We are listening to their stories. There will be 20 people in our study. John is one of them. His story helps us to look after people with cancer better. Summary As people with learning disabilities live longer, and the incidence of cancer is rising, it is of increasing importance to understand the lived cancer experience of this group. Consideration of the viewpoints of people with learning disabilities themselves will facilitate the development of cancer support services that are appropriate and sensitive to their needs. This paper presents preliminary findings of an ethnographic study into the experiences of people with learning disabilities who have cancer. One of the study participants, John Davies (who has mild learning disabilities), relates his cancer experience in his own words. Having ignored his symptoms until it was too late, he now urges others to go to the doctor as soon as possible. The study is ongoing, but findings to date highlight the importance of listening to the story of people's lives and illness.

SummaryPeople with intellectual disabilities are at risk of premature death due to failings in healthcare provision. To prevent this, it is important for healthcare services to identify and flag not only vulnerable conditions (including intellectual disability, dementia and mental health problems), but also the specific adjustments needed by individual patients.

Background\ud There has been evidence in recent years that people with intellectual disabilities in acute hospitals are at risk of preventable deterioration due to failures of the healthcare services to implement the reasonable adjustments they need. The aim of this paper is to explore the challenges in monitoring and preventing patient safety incidents involving people with intellectual disabilities, to describe patient safety issues faced by patients with intellectual disabilities in NHS acute hospitals, and investigate underlying contributory factors.\ud \ud Methods\ud This was a 21-month mixed-method study involving interviews, questionnaires, observation and monitoring of incident reports to assess the implementation of recommendations designed to improve care provided for patients with intellectual disabilities and explore the factors that compromise or promote patient safety. Six acute NHS Trusts in England took part. Data collection included: questionnaires to clinical hospital staff (n = 990); questionnaires to carers (n = 88); interviews with: hospital staff including senior managers, nurses and doctors (n = 68) and carers (n = 37); observation of in-patients with intellectual disabilities (n = 8); monitoring of incident reports (n = 272) and complaints involving people with intellectual disabilities.\ud \ud Results\ud Staff did not always readily identify patient safety issues or report them. Incident reports focused mostly around events causing immediate or potential physical harm, such as falls. Hospitals lacked effective systems for identifying patients with intellectual disabilities within their service, making monitoring safety incidents for this group difficult.\ud \ud The safety issues described by the participants were mostly related to delays and omissions of care, in particular: inadequate provision of basic nursing care, misdiagnosis, delayed investigations and treatment, and non-treatment decisions and Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders.\ud \ud Conclusions\ud The events leading to avoidable harm for patients with intellectual disabilities are not always recognised as safety incidents, and may be difficult to attribute as causal to the harm suffered. Acts of omission (failure to give care) are more difficult to recognise, capture and monitor than acts of commission (giving the wrong care). In order to improve patient safety for this group, the reasonable adjustments needed by individual patients should be identified, documented and monitored.

The aims of this pilot study were to evaluate treatment effects, ascertain safety and formulate best practice Chinese medicine protocols relevant for London women suffering from menopausal symptoms.This clinical pilot study employed a case series design within a wider action-based research project. 117 perimenopausal women between 45 and 55 years of age recruited from the general population were treated for menopausal symptoms by six experienced practitioners of Chinese medicine at the Polyclinic of the University of Westminster. Practitioners were instructed to treat as near to their usual practice style as possible. This involved using Chinese herbal medicine and/or acupuncture along with dietary and lifestyle advice. A maximum of 12 treatments over 6 months was allowed per patient.The menopause specific quality of life questionnaire (MenQoL), the Greene climacteric scale, and flushing diaries were used to evaluate treatment outcomes. Liver and kidney function tests were carried out at intake and after 1, 6 and 12 treatments to evaluate the safety particularly in relation to the use of herbal medicines.Patients showed significant improvement across all domains measured by the MenQoL and Greene climacteric scales. Reduction on the MenQoL scale between first and last visit was from 4.31 to 3.27 (p0.001) and on the Green climacteric scale from 21.01 to 13.00 (p0.001). Study participants did not reliably complete their flushing diaries. No adverse events or abnormal liver or kidney function values were observed during the course of the study.Further research that seeks to investigate the effects observed in more detail and to evaluate them against other forms of treatment and/or no-treatment controls is warranted. This could be achieved by way of a pragmatic randomized controlled trial that evaluated Chinese medicine against orthodox medical care.

Objective To determine whether children with disabilities attending special schools have the same immunisation uptake rate as the local general child population. Design Cross-sectional survey of computer database of immunisation records for the area. Setting Community population of Bath clinical area, south-west England. Sample The 136 children attending three special schools in the area and 272 randomly selected age and sex matched controls. Measurement Uptake rates of all vaccines covered by the routine immunisation schedule in the UK. Results Immunisation rates for the children in the special schools were significantly lower (59%) than those of control children attending normal schools (83%). The immunisations which children in special schools were less likely to have received were pertussis, measles and rubella. Conclusions Children with severe learning and physical disabilities who attend special schools in the area studied are less likely to be fully immunised than their peers attending mainstream schools. These children have the right to receive the appropriate protection against infectious disease and may in fact be particularly vulnerable to these diseases. Steps should be taken to determine why they are not fully immunised and plans made to improve the uptake rate.

People with intellectual disabilities (ID) experience many barriers in accessing quality health care for serious and terminal illness, including delayed diagnosis, as signs and symptoms of illness are misinterpreted There is growing evidence that palliative care services are underused by people with ID.A 3-year project aimed at exploring ways of increasing access to palliative care services by people with ID in South West London was conducted. A project group designed training sessions for both ID and palliative care staff involving four hospices and 228 care homes. Evaluators used interactive cycles involving discussions and interviews to map learning and identify constructive ways forward.In general, the study found that there was a lack of understanding of each other's role between palliative care professionals and ID staff, with each unsure of what the other service is providing and how it is run. Recommendations include securing a development worker for ID and end-of-life care; conducting training for ID care staff; establishing how ID services are organized within the local area; linking to national training programs; ensuring that senior management is proactively involved; and ensuring that the goals of any initiative are clear and measurable.

Purpose To explore the experiences of people with intellectual disabilities (ID) who have a relative or friend with cancer, and to identify their support needs. Methods and sample Participants were 21 adults with ID who had a relative/friend with cancer, now or in the past. Data were collected using focus groups and face-to-face interviews. Focus groups met four times, using a range of data collection techniques. Sessions were audio recorded and transcribed verbatim. Data were analysed using thematic content analysis. Data were collected between March 2010 and March 2011. Results Four themes emerged: (1) Protection and inclusion: participants who had not been told about their loved one's illness felt excluded; (2) Coping with cancer: participants had vivid memories of events and feelings. They worried about their families. Many had become carers themselves; (3) Understanding cancer: participants lacked knowledge about cancer and wanted to know more. (4) Someone to talk to: participants would have liked to share their feelings and questions with family, friends or professionals, but had not voiced their questions or concerns. ‘Someone to talk to about my feelings and worries’ and ‘Someone to support the rest of my family’ were voted the most helpful support strategies. Conclusions Cancer nurses should ensure that people with ID in their patients' social circle are included in the family unit and receive adequate emotional support. They should be proactive in giving them information that is easy to understand. Using fictional stories can be particularly helpful in eliciting questions and concerns.

Intrauterine infection of mice with a human genital tract isolate of Chlamydia trachomatis (serovar F) resulted in salpingitis. In some cases, oviduct damage was sufficient to cause infertility due to lumenal blockage. Parenteral immunization with a purified, heterologous, recombinant major outer-membrane (rMOMP) preparation reduced the proportion of animals developing severe salpingitis by 77% compared with mock-immunized controls, but failed to reduce chlamydial colonization of the lower genital tract. In contrast, mice immunized with rMOMP directly into the Peyer's patches to stimulate mucosal immunity shed fewer chlamydiae from the vagina than controls, but showed little reduction in oviduct damage. No consistent correlation was observed between antibody levels to rMOMP in immunized mice and reduced lower genital tract colonization. Immunization with rMOMP via the presacral space, a route previously shown to stimulate mucosal immunity in the genital tract, produced high levels of circulating anti-rMOMP IgG but only traces of anti-rMOMP IgA in vaginal secretions. There was no difference in the severity of salpingitis in these animals compared with mock-immunized controls. Immunization with rMOMP conferred no protection against infertility resulting from direct inoculation of chlamydiae into the oviducts.

Groups of mice from genetically defined inbred strains were infected genitally with a pathogenic human strain of Chlamydia trachomatis and their subsequent fertility was compared. The CBA, C3H (H-2o) and C3H/He-mg (H-2k) mice were less fertile than control mice, at least up to 6 months after infection. In contrast, fertility was not impaired in BALB/c mice or in congenic BALB/K mice, which had the H-2k haplotype. Reduced fertility was paralleled by the extent of histological oviductal inflammation in mice of each strain. No salpingitis was seen 21 days after infection in the BALB strains, but lesions were apparent in CBA and C3H strains up to about 70 days after inoculation and these sometimes developed into hydrosalpinges. These results indicate that susceptibility to chlamydial salpingitis and subsequent infertility is under genetic control. This control was not simply associated with the major H-2 gene complex, as mouse strains of the same haplotype (H-2k) differed in susceptibility. The fertility of BALB/c (H-2d) and BALB/K (H-2k) strains was no different from that of controls, and congenic C3H mice of differing H-2 haplotypes (H-2k and H-2o) showed reduced fertility. Although all the infected F1 (BALB/K x C3H/He-mg) mice produced litters at the same rate as untreated controls, the litters were considerably smaller. This was due to the occurrence of unilateral pregnancies in the mice inoculated under the ovarian bursae and possibly also to early fetal death in mice inoculated directly in the uterus. These findings emphasize the importance of early diagnosis and treatment of infection of the lower genital tract of women.

Around 1–3% of the world’s population has intellectual disabilities (Mash and Wolfe, 2004). Communication difficulties are a major obstacle in providing effective palliative care to this group. Problems may arise due to a lack of comprehension and a lack of verbal skills, affecting assessment and the provision of psychosocial support. This paper maps the communication difficulties experienced by people with intellectual disabilities within a palliative care setting, drawing on several research studies carried out by the authors. These include the time-consuming nature of effective communication, and difficulties around breaking bad news. The paper explores the ways in which people with intellectual disabilities may (mis)understand verbal information. Strategies for managing communication difficulties are outlined, including ways to use clear, unambiguous language. The authors conclude that the ability to communicate effectively with people with intellectual disabilities is a useful skill that will benefit all patients.

The widespread use of complementary therapies alongside biomedical treatment by people with cancer is not supported by evidence from clinical trials. We aimed to use combined qualitative and quantitative data to describe and measure individualised experiences and outcomes.In three integrative cancer support centres (two breast cancer only) in the UK, consecutive patients completed the individualised outcome questionnaire Measure Yourself Concerns and Wellbeing (MYCaW) before and after treatment. MYCaW collects quantitative data (seven-point scales) and written qualitative data and the qualitative data were analysed using published categories.Seven hundred eighty-two participants, 92% female, mean age 51 years, nominated a wide range of concerns. Psychological and emotional concerns predominated. At follow-up, the mean change (improvement) in scores (n = 588) were: concern 1, 2.06 (95% CI 1.92-2.20); concern 2, 1.74 (95% CI 1.60-1.90); and well-being, 0.64 (95% CI 0.52-0.75). The most common responses to 'what has been the most important aspect for you?' were 'receiving complementary therapies on an individual or group basis' (26.2%); 'support and understanding received from therapists' (17.1%) and 'time spent with other patients at the centres' (16.1%). Positive (61.5%) and negative (38.5%) descriptions of 'other things affecting your health' correlated with larger and smaller improvement in concerns and well-being, respectively.In a multicentre evaluation, the MYCaW questionnaire provides rich data about patient experience, changes over time and perceptions of what was important to each individual with cancer within that experience. It is unlikely that meaningful evaluations of this complex intervention could be carried out by quantitative methods alone.

Progesterone-treated C3H mice were inoculated into the uterus or ovarian bursa with a human genital tract isolate of C. trachomatis (serovar E), or with control medium alone. The mice were then observed at various times up to 260 days after inoculation. Before being killed the mice were given pituitary gonadotrophins to induce ovulation. Eggs were sought in the oviducts and ciliary activity in the fimbrial and ampullary sections of the oviducts was determined by light microscopy, before detailed examination by scanning electron microscopy. Eggs were visible in all control oviducts and both mucosal ultrastructure and ciliary activity appeared normal. By contrast, eggs were not recovered from the inoculated oviducts of mice infected intrabursally, nor was ciliary activity observed up to 28 days after inoculation. After this, ciliary activity reappeared but eggs were still not transported to the oviduct. Ultrastructural studies suggested that severe mucus congestion accompanied by tubal oedema and loss of ciliated epithelia play a major role in the aetiology of chlamydial-induced tubal damage. Infertility following chlamydial salpingitis could be associated with failure of egg transportation to the oviduct. Egg transport was still impaired even when luminal ciliary activity, ultrastructural integrity and patency had recovered. Our results suggest that chlamydial salpingitis in this mouse model closely resembles the human disease in its pathology and consequences for fertility, making the model particularly relevant for research on chlamydial vaccine development.

Many people with intellectual disabilities will be affected by cancer in their lifetime. There is a lack of available knowledge about people with intellectual disabilities’ understanding and experience of cancer, and about their need for cancer information. The principal aim of the study was to explore the information needs of people with intellectual disabilities who are affected by cancer. This was a qualitative, hypothesis generating study. Nine people with intellectual disabilities who were affected by cancer were identified using a purposive sampling method; five of these participated in the study. Data collection included observation of the use of a pictorial cancer information book designed for people with intellectual disabilities, and semi-structured interviews. Data analysis revealed three themes: (1) “Nobody told me”: the desperate need for cancer information; (2) “That reminds me”: telling my own story; and (3) “I don’t know much about cancer”: the difficulties of the staff supporting people with intellectual disabilities to read the cancer information book. The people with intellectual disabilities in this study were not provided with information about cancer. They wanted this information, and appeared to be capable of comprehending it. Further development of accessible information materials around cancer and palliative care is needed.

Objective\ud To identify the factors that promote and compromise the implementation of reasonably adjusted healthcare services for patients with intellectual disabilities in acute National Health Service (NHS) hospitals.\ud \ud Design\ud A mixed-methods study involving interviews, questionnaires and participant observation (July 2011–March 2013).\ud \ud Setting\ud Six acute NHS hospital trusts in England.\ud \ud Methods\ud Reasonable adjustments for people with intellectual disabilities were identified through the literature. Data were collected on implementation and staff understanding of these adjustments.\ud \ud Results\ud Data collected included staff questionnaires (n=990), staff interviews (n=68), interviews with adults with intellectual disabilities (n=33), questionnaires (n=88) and interviews (n=37) with carers of patients with intellectual disabilities, and expert panel discussions (n=42). Hospital strategies that supported implementation of reasonable adjustments did not reliably translate into consistent provision of such adjustments. Good practice often depended on the knowledge, understanding and flexibility of individual staff and teams, leading to the delivery of reasonable adjustments being haphazard throughout the organisation. Major barriers included: lack of effective systems for identifying and flagging patients with intellectual disabilities, lack of staff understanding of the reasonable adjustments that may be needed, lack of clear lines of responsibility and accountability for implementing reasonable adjustments, and lack of allocation of additional funding and resources. Key enablers were the Intellectual Disability Liaison Nurse and the ward manager.\ud \ud Conclusions\ud The evidence suggests that ward culture, staff attitudes and staff knowledge are crucial in ensuring that hospital services are accessible to vulnerable patients. The authors suggest that flagging the need for specific reasonable adjustments, rather than the vulnerable condition itself, may address some of the barriers. Further research is recommended that describes and quantifies the most frequently needed reasonable adjustments within the hospital pathways of vulnerable patient groups, and the most effective organisational infrastructure required to guarantee their use, together with resource implications.