People with mild and moderate intellectual disabilities are capable of expressing their views on end-of-life care provision, and should be asked to do so. The Nominal Group Technique presents an effective and acceptable methodology in enabling people with intellectual disabilities to generate their views.

ObjectiveTo 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.DesignA mixed-methods study involving interviews, questionnaires and participant observation (July 2011–March 2013).SettingSix acute NHS hospital trusts in England.MethodsReasonable adjustments for people with intellectual disabilities were identified through the literature. Data were collected on implementation and staff understanding of these adjustments.ResultsData 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.ConclusionsThe 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.

Background As patterns of morbidity and mortality are changing, more people with intellectual disabilities develop cancer or other life-limiting illness. This paper reviews the literature around the need of people with intellectual disabilities for palliative care. Methods A range of databases and the World Wide Web were searched for relevant papers, book chapters, training and information materials, unpublished materials and policy guidelines. Publications from 1995 to 2005 are included. Findings Although there has been a steady increase in published materials in recent years, research data around the palliative care needs of people with intellectual disabilities remain scarce. Case reports are the most prevalent method of exploring pertinent issues. The paper presents an overview of issues identified in the literature, with a particular focus on pain and symptom assessment, ethical issues, service planning and training needs. Conclusion There are significant gaps in current knowledge. The authors make recommendations for future areas of research and development.

BackgroundThere has been consistent evidence that people with learning disabilities experience health inequalities and poor NHS health-care provision, leading to avoidable harm and premature, avoidable death.ObjectivesTo describe the factors in NHS hospitals that promote or compromise a safe environment for patients with learning disabilities, in the light of national recommendations that hospitals should (1) identify patients with learning disabilities, (2) provide reasonably adjusted services, (3) involve carers as partners in care and (4) include patient and carer views in service development.DesignA 21-month mixed-method study carried out between 2011 and 2013, using questionnaire surveys, interviews, observation and monitoring of safety incidents.SettingSix NHS hospitals in the south of England.MethodsThe study employed mixed methodologies in three stages. Stage I involved mapping the systems and structural changes within each hospital site, with senior strategic managers asked to provide data on relevant policies. Stage II examined the effectiveness of implemented measures. Methods for this stage included an electronic questionnaire survey sent to all clinical staff (n = 990); face-to-face semi-structured interviews with clinical staff and strategic hospital managers (n = 68); semi-structured face-to-face interviews with adults with learning disabilities who had used the hospital in a 12-month period (n = 33); questionnaire survey (n = 88) and semi-structured interviews (n = 37) with carers of patients with learning disabilities who had been a patient during the 12-month period; and participant observation with patients (n = 8). Stage III assessed generalisability to other vulnerable patient groups and involved expert panel discussions with senior managers and senior clinicians at four sites (n = 42).ResultsExamples of good practice were not consistently replicated hospital-wide. The most common safety issues were delays and omissions of treatment and basic care. The main barriers to better and safer hospital care for people with learning disabilities were (1) the invisibility of patients with learning disabilities within hospitals, owing to a lack of effective flagging systems and a lack of staff knowledge and willingness to flag this group; (2) poor staff understanding of the specific vulnerabilities of people with learning disabilities, the reasonable adjustments to services that these patients may need and the Mental Capacity Act (Great Britain.Mental Capacity Act 2005. Chapter 9. London: The Stationery Office; 2005); (3) a lack of consistent and effective carer involvement and misunderstanding by staff of the carer role; and (4) a lack of clear lines of responsibility and accountability for the care of each patient with learning disabilities. The main enablers were the learning disability liaison nurse (LDLN), provided that this role was properly supported by senior management and carried sufficient authority to change practice; and ward managers who facilitated a positive ward culture and ensured consistent implementation of reasonable adjustments.ConclusionsThe vulnerabilities of people with learning disabilities can, and do, lead to compromised patient safety in NHS hospitals. Further research is needed as follows: (1) identifying the most frequently needed reasonable adjustments within the hospital care pathways of people with learning disabilities and their cost implications; (2) identifying the most effective structures for ensuring clear lines of responsibility and accountability for the care of patients with learning disabilities, including support needed by ward managers in order to carry day-to-day accountability; (3) investigating practical and effective ways of flagging patients with learning disabilities across NHS services and within NHS hospitals; (4) investigating, implementing and evaluating protocols for shared care; (5) evaluating LDLN posts nationwide; and (6) extending research recommendations (1) and (3) to patients with dementia and those with mental health problems.Study registrationComprehensive Clinical Research Network Portfolio, 10998; Integrated Research Application System Coordinated System for gaining NHS Permission, 74907.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

BackgroundCancer incidence among people with learning disabilities is rising. There have been no published studies of the needs and experiences of people with learning disabilities and cancer, from their own perspective. AimTo provide insight into the experiences and needs of people with learning disabilities who have cancer. Design of studyProspective qualitative study, using ethnographic methods. SettingParticipants' homes, hospitals, nursing homes, and hospices in London and surrounding areas. MethodThe participants were 13 people with learning disabilities ranging from mild to severe, who had a cancer diagnosis. The main method of data collection was participant observation (over 250 hours). The median length of participation was 7 months. ResultsParticipants' cancer experiences were shaped by their previous experience of life, which included deprivation, loneliness, and a lack of autonomy and power. They depended on others to negotiate contact with the outside world, including the healthcare system. This could lead to delayed cancer diagnosis and a lack of treatment options being offered. Most participants were not helped to understand their illness and its implications. Doctors did not make an assessment of capacity, but relied on carers' opinions. ConclusionUrgent action is warranted by findings of late diagnosis, possible discrimination around treatment options, and lack of patient involvement and assessment of capacity in decision making. There are significant gaps in knowledge and training among most health professionals, leading to disengaged services that are unaware of the physical, emotional, and practical needs of people with learning disabilities, and their carers.

This study demonstrates that medical end-of-life decisions played a part in significant numbers of people with IDs who have died within this centre, but further studies are needed to establish decision-making processes.

People with intellectual disabilities are among the most disadvantaged groups in society. A literature review was conducted aiming to answer the following question: What are the palliative care needs of people with intellectual disabilities? The literature review covers case histories, morbidity and mortality patterns for people with intellectual disabilities, their healthcare needs and primary care provision, the way they may present symptoms, their conceptualization of illness and death and issues around education and training. While the literature review reveals a lack of empirical data around the palliative care needs of people with intellectual disabilities, a number of potential problem areas are highlighted. These include late presentation of illness, difficulties in assessing symptoms, difficulties in understanding the illness and its implications and ethical issues around decision making and consent to treatment. It is suggested that future studies will need to include the views and experiences of people with intellectual disabilities themselves. Areas for possible future development include symptom assessment, evaluation of current practice and access to services and the development of information and training materials.

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.