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The purpose of this paper is to report the findings of the Confidential Inquiry into premature deaths of people with intellectual disabilities (CIPOLD) in relation to the Mental Capacity Act (England and Wales) (MCA) 2005.

CIPOLD reviewed the deaths of all known people with intellectual disabilities (ID) aged four years and over who had lived in the study area and died between 2010 and 2012.

The deaths of 234 people with ID aged 16 years and over were reviewed. There were two key issues regarding how the MCA was related to premature deaths of people with ID. The first was of the lack of adherence to aspects of the Act, particularly regarding assessments of capacity and best interests decision-making processes. The second was a lack of understanding of specific aspects of the Act itself, particularly the definition of “serious medical treatment” and in relation to Do Not Attempt Cardiopulmonary Resuscitation guidelines.

CIPOLD did not set out to specifically evaluate adherence to the MCA. It may be that there were other aspects relating to the MCA that were of note, but were not directly related to the deaths of individuals.

Addressing the findings of the Confidential Inquiry in relation to the understanding of, and adherence to, the MCA requires action at national, local and individual levels. Safeguarding is everyone's responsibility, and in challenging decision-making processes that are not aligned with the MCA, the authors are just as effectively protecting people with ID as are when the authors report wilful neglect or abuse.

CIPOLD undertook a retrospective, detailed investigation into the sequence of events leading to the deaths of people with ID. To the authors’ knowledge, this is the first time that such research has associated a lack of adherence to the MCA to premature deaths within a safeguarding framework.

The paper presents a comprehensive review of the UK research literature on the health needs of people with learning disabilities, and the response of mainstream health services to those health needs. Evidence from the review, although limited in some areas, clearly demonstrates that people with learning disabilities in the UK have significantly poorer health than the UK population generally in a number of priority areas for the NHS. Furthermore, people with learning disabilities have particularly poor health in a number of additional areas involving significant mainstream NHS resources. Despite these considerably greater health needs, people with learning disabilities receive poorer support from mainstream health services, across primary care, hospital services and screening programmes.The findings of the review indicate that mainstream NHS services should not only include people with learning disabilities, but also prioritise them as a particularly vulnerable group requiring urgent attention if general NHS priorities for health inequalities and service standards are to be met.

The purpose of this paper is to present information from the Joint Health and Social Care Self-Assessment Framework (JHSCSAF) on reported rates of cervical cancer, breast cancer and bowel cancer screening for eligible people with learning disabilities in England in 2012/2013 compared to screening rates for the general population.

Between 94 and 101 Learning Disability Partnership Boards, as part of the JHSCSAF, provided information to allow the calculation of rates of cervical cancer, breast cancer and bowel cancer screening in their locality, for eligible people with learning disabilities and for the population as a whole.

At a national level, reported cancer screening coverage for eligible people with learning disabilities was substantially lower than for the population as a whole (cervical cancer screening 27.6 per cent of people with learning disabilities vs 70 per cent of total population; breast cancer screening 36.8 per cent of people with learning disabilities vs 57.8 per cent of total population; bowel cancer screening 28.1 per cent of people with learning disabilities vs 40.5 per cent of the general population). There were considerable geographical variations in reported coverage for all three screening programmes.

Consistent with previous research, localities in England report cancer screening rates for eligible people with learning disabilities considerably below those of the general population. There is an urgent need to address data availability and quality issues, as well as reasonable adjustments to cancer screening programmes to ensure uniformly high rates of cancer screening for people with learning disabilities across England.

This paper seeks to provide a commentary on the previous paper in this issue “Does he have sugar in his tea? Communication between people with learning disabilities, their carers and hospital staff”.

This commentary outlines some “reasonable adjustments” for people with learning disabilities in primary and secondary care.

The paper finds that there is a potential for Hospital Passport‐type documents to provide a better link between individuals and primary and secondary healthcare services.

The paper suggests that one way of helping to improve outcomes for people with learning disabilities would be to work more creatively across traditional boundaries.

A systematic review of the literature was completed to examine the needs of those who provide care to people with intellectual disability and dementia. The purpose of this paper was to develop an understanding of the complexities, challenges and support available to meet the needs of an ageing population.

A qualitative evidence synthesis was used to appraise 12 studies. An evidence synthesis approach was used to better understand the challenges caregivers experience in caring for a person with intellectual disability and dementia. Aggregating and integrating findings from multiple studies allowed to identify inconsistencies, quality, relationships and trends to enhance the awareness of gaps in care provision.

There were six main domains identified from the available literature which included: gaps in knowledge and skills, early identification of dementia and associated difficulties, managing behaviour, coping, burden of care and Impact on confidence.

To the best of the authors’ knowledge, this is the first paper to use qualitative evidence synthesis to understand the challenges of caring for a person with intellectual disability and dementia.

The purpose of this commentary is to reflect on the implications for practice and lessons that can be drawn from the case study presented.

The commentary is based on a review of the case study and tools available to support practice.

The case study highlights weaknesses in the way that access to healthcare is currently facilitated for people with learning disabilities.

The commentary explores the lessons to be drawn from the case study in the wider context of health facilitation.

This study illuminates the experiences of adults diagnosed with autism spectrum disorders (ASDs) and intellectual disabilities (IDs) and their challenges and successes in receiving quality healthcare services. Individuals with developmental disabilities often experience health issues associated with aging at earlier ages and at higher rates than the general population. This population has a higher incidence of chronic health conditions that require regular medical attention.

The intent of this project was to learn directly from adults and their caregivers how well healthcare providers understand autism, explore their experience with how well their care is coordinated between primary healthcare and other specialty services, and identify factors which could impact access to care and to discover what other barriers which may potentially influence health outcomes for ASD adult.

A qualitative study conducted with semi-structured interviews with 12 adults diagnosed with ASD and/or their guardians/caregivers.

Some of the adults interviewed experienced negative health outcomes and suboptimal relationships with healthcare providers; others seemed to have positive relationships. Clinical and communications accommodations were necessary to make healthcare provision more comfortable. Barriers to accessing healthcare services existed in many forms.

The healthcare needs of the growing population adults diagnosed with ASD/ID are anticipated to be significant. This challenge is further exacerbated given there are few trained healthcare providers who are prepared or dedicated to serve this population. Continuing to build awareness of the health needs of the ASD/ID adult population is critical.

This project is highly innovative as it is the first attempt to understand how the adult autism population accesses care and perceives their healthcare interactions. This study serves as a starting point to suggest new opportunities for further research for this growing population.