The Confidential Inquiry into premature deaths in people with learning disabilities (CIPOLD) was commissioned by the Secretary of State for Health as a result of a recommendation by Jonathan Michael in ‘Healthcare for All’  the report of the Independent Inquiry into access to healthcare for people with learning disabilities. The Confidential Inquiry team were charged with looking into premature deaths in people with learning disabilities in order to provide evidence for clinical and professional staff of the extent of the problem and to produce guidance on prevention

The aim of the Inquiry was to review the patterns of care that people received in the period leading up to their deaths in order to identify any errors or omissions that may have contributed to those deaths.

The CIPOLD team looked at all known deaths of people with disabilities over a 2-year period in 5 Primary Care Trust areas of South-West England, as well as looking at 58 comparator cases of adults without learning disabilities who died in the same area.

CIPOLD reviewed the deaths of 247people with learning disabilities over the 2-year period, of whom 40% had mild, 31% moderate, 21% severe, 8% had profound and multiple learning disabilities.

They found the most common underlying causes of death to be heart and circulatory disorders (22%) and cancer (20%),

The final event leading to death in the people with learning disabilities was most frequently a respiratory infection

Interestingly they found that the fact that the person had learning disabilities was mentioned on few (23%) cause of death certificates.  They also found that fewer deaths of people with learning disabilities (38%) were reported to the coroner compared with the general population (46%). The CIPOLD Overview Panel also identified additional deaths that should have been reported to the coroner.

They found that 43% of the deaths of people with learning disabilities were unexpected, although they found no significant difference between people with learning disabilities and the general population in the conditions commonly known to be unexpected

With the most common reasons being:

• delays or problems with diagnosis or treatment
• problems with identifying needs
• providing appropriate care in response to changing needs.

Unsurprisingly, they found significant health conditions in the people in the study and annual health checks had been carried in the year before their deaths on 71% of those who were on GP learning disability registers.

Although more than a third were reported as having difficulty in communicating their pain, a pain assessment tool such as DisDAT had been used with only 4 people.

The great majority of illnesses that led to the deaths of people with learning disabilities were promptly recognised but for 29% there was significant difficulty or delay in diagnosis, investigation or specialist referral

The team point out that the lack of reasonable adjustments, particularly relating to attendance at clinic appointments and investigations, was a contributory factor in a number of deaths.

They found that GP referrals did not mention learning disability and that hospital ‘flagging’ systems were not effective.

In relation to the operation of the Mental Capacity Act 2005, they found that health and social care professionals often did not use the processes for assessing capacity, making ‘best interest’ decisions or appointing Independent Mental Capacity Advocates.

The team conclude that health and social care for people with learning disabilities was deficient in a number of ways and that there remains a need to identify people with learning disabilities in healthcare settings and to “record, implement and audit the provision of ‘reasonable adjustments’ to avoid their serious disadvantage.”

They make a number of recommendations, including

• Clear identification of people with learning disabilities in the healthcare system
• Audit of Reasonable Adjustments
• Allocation of named healthcare coordinator to  people with complex or multiple health needs
• Patient-held health records for those with multiple health conditions.
• Improvements in Annual Health Check processes
• Proactive referrals to specialist  learning disability services.
• 24 hour access to Mental Capacity Act advice with mandatory training updates for staff in health or social care.
• Clearer definitions and standardised approaches to ‘Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) ‘Guidelines
• Better coordination of palliative care within the framework of the Mental Capacity Act 2005
• Improved systems for the collection of standardised mortality data about people with learning disabilities.
• The establishment of a National Learning Disability Mortality Review Body

You can download the full report, executive summary and easy read versions at the CIPOLD site here