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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.

People with intellectual disability die prematurely and from avoidable causes. Innovative solutions and proactive strategies have been limited in addressing this disparity. This paper aims to detail the process of developing a risk stratification tool to identify those individuals who are higher risk of premature mortality.

This study used population health management principles to conceptualise a risk stratification tool for avoidable deaths in people with intellectual disability. A review of the literature examined the existing evidence of causes of death in people with intellectual disability. A qualitative methodology using focused groups of specialist clinicians was used to understand the factors that contributed towards avoidable deaths in people with intellectual disability. Delphi groups were used for consensus on the variables for inclusion in the risk stratification tool (Decision Support Tool for Physical Health).

A pilot of the Decision Support Tool for Physical Health within specialist intellectual disability service demonstrated effective utility and acceptability in clinical practice. The tool has also demonstrated good face and construct validity. A further study is currently being completed to examine concurrent and predictive validity of the tool.

To the best of the authors’ knowledge, this is the only study that has used a systematic approach to designing a risk stratification tool for identifying premature mortality in people with intellectual disability. The Decision Support Tool for Physical Health in clinical practice aims to guide clinical responses and prioritise those identified as at higher risk of avoidable deaths.

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.