Confidential Inquiry into the deaths of people with learning disabilities Dr Pauline HeslopManager of the Confidential InquirySenior Research Fellow

Number of reviews

We reviewed : • All known deaths of people with

learning disabilities• From 5 PCT areas• From 1st June 2010 – 31st May 2012.

233 adults with learning disabilities

14 children with learning disabilities

58 comparator cases.

The cohort of people with learning disabilities

• Age 4-96.• Over half (58%) male.• Most (93%) single.• Most (96%) White British.

40% had mild learning disabilities 31% moderate learning disabilities 21% severe learning disabilities8% had profound and multiple learning disabilities.

Age at death

• Median age at death for males was 65 years• Men with learning disabilities died on average 13

years earlier than men in the general • population.

• Median age at death for women was 63 years• Women with learning disabilities died on • average 20 years earlier than women in the

general population.

Immediate causes of death

• The most common immediate causes of death in people with learning disabilities were:

• respiratory problems (34%)

• heart and circulatory disorders (21%).

Underlying causes of death

• The most common underlying reasons for people with learning disabilities dying were:

• heart and circulatory disorders (22%)

• cancer (20%).

Unexpected deaths

• Using ICD-10 codes of underlying causes of death that can be assumed to cause an unexpected death

• 25% nationally• 23% in CIPOLD deaths

Total avoidable deaths

Avoidable deaths

Amenable mortality:

All or most deaths from that cause could be avoided through good quality healthcare.

27.5%

Preventable mortality

All or most deaths from that cause could be avoided by public health interventions in the broadest sense.

12% 9%

Deaths amenable to good quality healthcare

Significance of:• age • severity of learning disabilities • underlying cause of death • if had a significant

partner/friend.

Premature deaths

CIPOLD deaths were considered to be premature

‘if, without a specific event that formed part of the ‘pathway’ that led to death, it was probable (i.e. more likely than not) that the person would have continued to live for at least one more year.’

Premature deaths

• 42% of deaths considered to be premature

• Younger people more likely to have premature death

Most common reasons for premature deaths

• Problems with assessing or investigating the cause of illness.

This affected 41% of those whose illness was reported to a medical practitioner .

• Problems with treating a person’s illness.

This affected 42% of those diagnosed with an illness.

Issues related to the delays in the care pathways

• A lack of reasonable adjustments to help people to access healthcare services.

• A lack of coordination of care across and between different disease pathways and service providers.

• A lack of effective advocacy for people with multiple conditions and vulnerabilities.

Contributory Factors

• Lack of assessment• Best Interests decisions:

• delays• lead• recording

• Use of IMCAs: • ‘serious medical treatment’

• Timeliness of decisions• Value of the Mental Capacity Act

Mental Capacity Act

Contributory factors

• Do Not Attempt Cardiopulmonary Resuscitation orders

• Poor record keeping• Lack of proactive care:

Fear of contactForward planningPostural careHospital discharge problemsPlanning for transitionLong-term condition care plans

Comparator study

• A subgroup of 58 people with learning disabilities

compared with

• 58 people without learning disabilities

The comparator studyParticular problems identified for people with learning disabilities (all more common than for comparators):

• Problems with advanced health and care planning.

• Problems with coordination of care and information sharing.

• Problems with recognising needs and adjusting care as needs changed.

• Problems with record keeping and accessing records.

• Problems with the Mental Capacity Act being followed.

• Delays in the diagnosis and treatment of health problems.

The comparator study

Problems commonly experienced by both groups:

• Problems with DNACPR orders

• Problems with end of life care

End of

Life Plan

Recommendations Clear and consistent

recording and identification of people with learning disabilities across all heath record systems.

Reasonable adjustments identified, recorded and audited.

Recommendations

NICE Guidelines to take into account multi-morbidity.

Recommendations A named healthcare

coordinator to be allocated to people with complex or multiple health needs, or two or more long-term conditions.

Patient-held health records to be introduced and given to all patients with learning disabilities who have multiple health conditions.

Recommendations

Standardisation of Annual Health Checks and a clear pathway between Annual Health Checks and Health Action Plans.

Recommendations People with learning disabilities to have access

to the same investigations and treatments as anyone else, but acknowledging and accommodating that they may need to be delivered differently to achieve the same outcome.

Barriers in individuals’ access to healthcare to be addressed by proactive referral to specialist learning disability services.

Recommendations

Adults with learning disabilities to be considered a high-risk group for deaths from respiratory problems.

Recommendations Mental Capacity Act advice to be

easily available 24 hours a day.

The definition of Serious Medical Treatment and what this means in practice to be clarified.

Mental Capacity Act training and regular updates to be mandatory for staff involved in the delivery of health or social care.

Recommendations

Do Not Attempt Cardiopulmonary Resuscitation Guidelines to be more clearly defined and standardised across England.

Recommendations Advanced health and care planning to be

prioritised. Commissioning processes to take this into account, and be flexible and responsive to change.

All decisions that a person with learning disabilities is to receive palliative care only should be supported by the framework of the Mental Capacity Act and the person referred to a specialist palliative care team.

Recommendations Improved systems in place nationally for the

collection of standardised mortality data about people with learning disabilities.

Systems in place to ensure that local learning disability mortality data is analysed and published on population profiles and Joint Strategic Needs Assessments.

Establishment of a National Learning Disability Mortality Review Body.

Department of Health response • Published in July 2013• DH is ‘committed to addressing

the issues identified’• Criticised for a lack of detail• Ongoing discussions between

the DH, NHS England and the CI team

• Joint conference in Spring 2014 to share progress

Contact details

• www.bristol.ac.uk/cipold

• 0117 331 0973

or

• 0117 331 0980

• Ci-team@bristol.ac.uk