What do we know about deaths of people with learning disabilities?

Pauline Heslop,Programme Lead,Learning Disabilities Mortality Review (LeDeR) Programme

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What we will cover

•Overview of what we know about deaths of people with learning disabilities.•The need to move from research evidence to improvements in care.•The Learning Disabilities Mortality Review (LeDeR) programme as a service improvement initiative.•Time for questions/discussion.

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Overview of what we know about deaths of

people with learning disabilities

Sources of information

Mortality surveillance •The 2013 joint health and social care ID SAF.•Local registers of people with learning disabilities.•Analysis of Cause of Death CertificatesCase reviews•Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD).Data linking national datasets•Linkage of CPRD and mortality data

Age at deathEarly deaths of people with learning disabilities – approx. 16 year disparity.Differences in age at death according to different conditions associated with learning disabilities.Increasing median age at death over time (from 53 to 57 years from 2008-2011).

Age-standardised mortality rate of more than 3 – so three times as many deaths as would be expected if the local age-specific death rates for people without learning disabilities had applied.

‘Little evidence of any closing of the gap in age-standardised mortality rates or life expectancy between people with learning disabilities and the general population’ (Emerson et al. 2014 p.94).

Causes of death

Immediate cause of death

Underlying cause of death

Any other diseases, injuries, conditions or events that contributed to the death, but were not part of the direct sequence leading up to the death.

Cause of death: most common numerically, and SMR

Circulatory system (ischaemic heart disease SMR 2.2; cerebrovascular disease SMR 3.3)

Respiratory disease (pneumonia (SMR 7.7; aspiration of solids or liquids SMR 21.8)

Neoplasms (cancer) (of digestive organs SMR 1.5)

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Avoidable deaths (from CIPOLD, 2013)

Amenable mortality: All or most deaths

from that cause could be avoided through good quality healthcare

13%36.5%

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

21% 21%

Moving from research evidence to improvements in care

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Do we know sufficient about mortality of people with learning disabilities?

Sufficient to recognise concern

As a ‘snapshot’ of the current situation to

inform practice improvements

ₓ To monitor long-term trends at national level

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From evidence to practice

Support personal reflection and person-to- person exchange and dissemination of knowledge.

Create “actionable knowledge”, structured to integrate with day to day procedures and processes.

Build organisational capacity for use of knowledge through processes that will enable best use of knowledge.

Build workforce competencies in using knowledge.(from Scotland’s Sharing Knowledge strategy)

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The Learning Disabilities Mortality Review (LeDeR) programme as a service improvement initiative

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Key Programme aims

• To drive improvement in the quality of health and social care service delivery for people with learning disabilities.

• To help reduce premature mortality and health inequalities in this population.

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• To support local areas to conduct reviews of deaths of people with learning disabilities

• Series of additional projects

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Two key elements of the Programme

Local reviews of deaths

Purpose:To help health and social care professionals and policy makers to• Identify the potentially avoidable contributory factors related to

deaths of people with learning disabilities. • Develop action plans to make any necessary changes to health

and social care service delivery for people with learning disabilities.

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Expected numbers of deaths of people with learning disabilities each yearTotal Age 0-17 Age 18-74 All ages

England 78 2,209 2,976

These are estimates of people with learning disabilities identified on GP registers.

On average, in England, we estimate that about two thirds as many people with learning disabilities die each year than do children aged 0-17.

Process of local reviews of deaths

1. Death notification. 2. Initial review and action plan.3. If further review is indicated, multiagency review and action

plan.4. Analysis of common themes and recommendations.5. Oversight of action plans and service improvements.

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Deaths of children aged 4-17Reviewed by Child Death Overview Process. Local reviewer liaises with team to offer learning disability expertise if appropriate and ensure collection of core data for LeDeR Programme.

Deaths subject to Priority Themed ReviewA subset of anonymised reports of deaths to be reviewed externally. All will have been to multiagency review. In Year 1 this will be deaths of young people aged 18-24, or from Black and Minority Ethnic Communities.

Deaths aged 0-4years and 75 years and olderNot in the scope of the review programme.

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‘Footprint’ for the programme

ProgressNorthPilot site in NE and Cumbria – learning and sharing event

held. Wider roll out across the North now.Midlands and the EastLeicestershire, Leicester and Rutland pilot site – learning

and sharing event in November – then wider roll out from March 2017.

SouthWessex pilot site reviewing deaths. Learning and Sharing

event in early 2017 – then wider roll out.London – several pilot sites getting established.

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Contact details

Dr Pauline HeslopLeDeR Programme LeadNorah Fry Centre for Disability Studies, University of Bristol8 Priory Road, Bristol BS8 1TN

Pauline.Heslop@bristol.ac.ukTel: 0117 3310686Website: www.bristol.ac.uk/sps/leder

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