Anna Marriott

The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study.

BACKGROUND The Confidential Inquiry into premature deaths of people with intellectual disabilities in England was commissioned to provide evidence about contributory factors to avoidable and premature deaths in this population. METHODS The population-based Confidential Inquiry reviewed the deaths of people with intellectual disabilities aged 4 years and older who had been registered with a general practitioner in one of five Primary Care Trust areas of southwest England, who died between June 1, 2010, and May 31, 2012. A network of health, social-care, and voluntary-sector services; community contacts; and statutory agencies notified the Confidential Inquiry of all deaths of people with intellectual disabilities and provided core data. The Office for National Statistics provided data about the coding of individual cause of death certificates. Deaths were described as avoidable (preventable or amenable), according to Office for National Statistics definitions. Contributory factors to deaths were identified and quantified by the case investigator, verified by a local review panel meeting, and agreed by the Confidential Inquiry overview panel. Contributory factors were grouped into four domains: intrinsic to the individual, within the family and environment, care provision, and service provision. The deaths of a comparator group of people without intellectual disabilities but much the same in age, sex, and cause of death and registered at the same general practices as those with intellectual disabilities were also investigated. FINDINGS The Confidential Inquiry reviewed the deaths of 247 people with intellectual disabilities. Nearly a quarter (22%, 54) of people with intellectual disabilities were younger than 50 years when they died, and the median age at death was 64 years (IQR 52-75). The median age at death of male individuals with intellectual disabilities was 65 years (IQR 54-76), 13 years younger than the median age at death of male individuals in the general population of England and Wales (78 years). The median age at death of female individuals with intellectual disabilities was 63 years (IQR 54-75), 20 years younger than the median age at death for female individuals in the general population (83 years). Avoidable deaths from causes amenable to change by good quality health care were more common in people with intellectual disabilities (37%, 90 of 244) than in the general population of England and Wales (13%). Contributory factors to premature deaths in a subset of people with intellectual disabilities compared with a comparator group of people without intellectual disabilities included problems in advanced care planning (p=0·0003), adherence to the Mental Capacity Act (p=0·0008), living in inappropriate accommodation (p<0·0001), adjusting care as needs changed (p=0·009), and carers not feeling listened to (p=0·006). INTERPRETATION The Confidential Inquiry provides evidence of the substantial contribution of factors relating to the provision of care and health services to the health disparities between people with and without intellectual disabilities. It is imperative to examine care and service provision for this population as potentially contributory factors to their deaths--factors that can largely be ameliorated. FUNDING Department of Health for England.

The need for FASTER CARE in the diagnosis of illness in people with intellectual disabilities

The Confidential Inquiry into premature deaths of people with learning disabilities 1 reported the median age at death for the 247 people with intellectual disabilities (ID) in the study to be on average 16 years sooner than in the general population of England and Wales. Almost one-quarter (22%) were under the age of 50 years when they died, compared with just 9% in the general population. A comparator group of people without ID, who died at a similar age and from similar causes, experienced significantly fewer problems in all aspects of care provision, coordination, and documentation. One of the contributory factors highlighted in the report was the delay in the care pathways of people with ID who had died, in particular delayed diagnosis. Of the 171 people with ID who had been identified as being unwell, by themselves or their carers, and who had responded promptly in reporting this to a doctor, almost one-quarter (23%) had one or more problems with their illness being diagnosed. The problems of diagnosing illness in people with ID are well-rehearsed. Patient-related barriers include that people with ID may not identify symptoms promptly or communicate them articulately; they may be reliant on support to access services, present with illness in unusual ways, and have an atypical response to treatments. Clinician-related barriers relate to a lack of knowledge about the health issues of people with ID and a lack of skill in adopting appropriate approaches when assessing, diagnosing, treating, and monitoring illness in this patient group.2 The Confidential Inquiry additionally identified a number of issues contributing to delays in diagnosing …

The Confidential Inquiry into the deaths of people with learning disabilities – the story so far

Purpose – This paper aims to outline the process of undertaking the Confidential Inquiry (CI) into the deaths of people with learning disabilities and discusses three particular issues: engaging with professionals; maintaining confidentiality; and the tension between wanting to base the findings on a sufficiently large number of cases so that the findings are robust and reliable, but also wanting to make immediate changes to any potentially modifiable factors found to contribute to the deaths of people with learning disabilities.Design/methodology/approach – The CI into the deaths of people with learning disabilities reviews the deaths of all people with learning disabilities living in the (former) Avon and Gloucestershire areas. It has been commissioned by the Department of Health to run until March 2013. One of the key drivers for a CI has been the work of Mencap in exposing the unequal health care that some people with learning disabilities received in the NHS.Findings – The principal goal of the CI is...

Poor adherence to the mental capacity act and premature death

Purpose – 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. Design/methodology/approach – 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. Findings – 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. Research limitations/implications – 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. Practical implications – 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 everyones 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. Originality/value – 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.

‘Reasonable adjustments’ for vulnerable patients

We support the views of Tuffrey-Wijne & Hollins[1][1] and their argument for the NHS to take an organisational approach to embed documentation and provision of reasonable adjustments for those with protected characteristics under the Equalities Act 2010. Lord Darzi defined quality for the NHS as

Commentary on “Does he have sugar in his tea?”

Purpose – 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”.Design/methodology/approach – This commentary outlines some “reasonable adjustments” for people with learning disabilities in primary and secondary care.Findings – 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.Originality/value – 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.

Cancer screening for people with learning disabilities and the role of the screening liaison nurse

Purpose – The purpose of this paper is to describe the role of the screening liaison nurses for adults with learning disabilities employed by Peninsula Community Health. Design/methodology/approach – This paper reports on the national situation in regard to cancer screening for people with learning disabilities and explores the barriers which limit their participation in these screening programmes. It describes the screening liaison nurse role and presents case examples of the work they do. Findings – The local screening rates for people with learning disabilities have increased since the creation of this role in 2011. Originality/value – Increasing the uptake of cancer screening by people with learning disabilities is clearly in line with existing national priorities. To the author’s knowledge this is a unique role in this country and the authors propose that other areas would benefit from adopting this model of working.

Authors’ reply to Waite

Waite correctly states that the test under the Mental Capacity Act 2005 is found in section 2(1) and that it is a single test.1 2

All opportunities should now be taken to meet the needs of patients with learning difficulties

Hollins and Tuffrey-Wijne recently highlighted some of the key findings of the Confidential Inquiry into Premature Deaths of People with Learning Disabilities.1 We await the minister of state for care and support, Norman Lamb, and the Department of Health’s response before the end of June 2013. However, the 18 key recommendations will need sustained action from all of us involved in health and social …