Why a Confidential Inquiry is necessary

A demand for a Confidential Inquiry into the premature deaths of people with learning disabilities was made in the White Paper Valuing People in 2001 (Department of Health, 2001). This stated that: ‘there is an above average death rate among younger people with a learning disability’ (p.59) and that ‘evidence of available illness and premature death amongst people with a learning disability is a major cause of concern for the Government’ (p.62).

In 2004, Mencap’s ‘Treat me right’ report and campaign exposed to a wide audience the unequal healthcare that people with learning disabilities often received (Mencap, 2004). The ‘Treat me right’ report concluded that although some of the reasons were known why people with learning disabilities died young, an inquiry into the premature deaths of people with learning disabilities should be conducted. Mencap believed that an inquiry would not only identify the causes of death, but also be a powerful lever for improvement in the delivery of health services.

A formal investigation into the inequalities in physical health experienced by people with mental health problems and people with learning disabilities was conducted by the Disability Rights Commission (DRC) and reported in 2006. The Inquiry was specifically in relation to primary health care. It reiterated that ‘it is overwhelmingly acknowledged and clear from the evidence’ that people with learning disabilities and/or mental health problems experienced considerable inequalities in health, and that it was ‘not acceptable’ that they died younger than other people and are four times as likely to die of preventable causes as people in the general population (Disability Rights Commission, 2006; 9, 1). The Inquiry also considered it ‘alarming’ (p.15) that little or nothing had been done to implement the recommendations of Mencap’s ‘Treat me right’ report.

The following year the reconvened formal Inquiry Panel stated that ‘not enough strategic change or prioritisation has yet taken place for us to be confident that the stark inequalities the original DRC Investigation highlighted will be significantly reduced in the foreseeable future. This is extremely disappointing. We cannot over-emphasise the need for greater urgency. For many people with learning difficulties and mental health problems this is quite literally a matter of life and death’ (Disability Rights Commission, 2007 p.6).

Earlier on in 2007, ‘Death by Indifference' (Mencap, 2007) described the circumstances surrounding the deaths of six people with learning disabilities whilst they were in the care of the NHS. It highlighted the ‘national disgrace’ of ‘institutional discrimination’ by healthcare services towards people with learning disabilities and their families and carers (Mencap, 2007; preface) and criticised the ‘astonishing lack of response’ at Government level to the DRC and previous reports. The report acknowledged that a feasibility study into a confidential inquiry into the premature deaths of people with a learning disability had been undertaken, but once again called for a formal Inquiry proper to take place.

In response to the ‘Death by Indifference’ report, an Independent Inquiry was announced, to be led by Sir Jonathan Michael. This was to identify the action needed to ensure adults and children with learning disabilities receive appropriate health services in the NHS. The terms of reference required the Inquiry to learn lessons from the six cases highlighted in the Mencap report. The Inquiry concluded that ‘there is evidence of a significant level of avoidable suffering and a high likelihood that there are deaths occurring which could be avoided’ (Michael, 2008; p.53). It recommended the establishment of a learning disabilities Public Health Observatory, and a time-limited Confidential Inquiry into premature deaths of people with learning disabilities ‘to provide evidence for clinical and professional staff on the extent of the problem and guidance on prevention’ (p.44).