Transcript Document

National Confidential Inquiry into
Suicide and Homicide by People with
Mental Illness
National Learning Disability
Review Function
Options Appraisal Report 2014
Background
• 2 decades of
evidence showing
• early mortality
• health inequalities
• Response to
CIPOLD report
• national mortality
review function
Aims - to answer the following:
• How can individuals with LD
who die be identified?
• Will individuals with all
severities of LD be included?
• What data linkages already
exist, or need to be created to
support a mortality review
function?
• Shall all deaths be reviewed?
• Should all case notes be
reviewed for individuals with
LD who die, or should there be
themes?
• What will the review process
be and who will be involved?
• What are the governance
issues?
• How would learning be
communicated across the
NHS and social care systems?
Findings
Stakeholder themes
6 themes identified
• Identifying and defining people with all spectrums of
LD
• Mortality and morbidity
• Access to good quality healthcare
• Evidence of improvement
• Geographical variation
• The wider social and health care context
Lessons from NCISH
Balance of
local and
national data
Assessing the
impact of
service
change
NCISH
Rolling
programme
of priority
topics
‘Graded’
data
collection
Findings: Features of case review
Priority topics to address
• Differences in services and social conditions between
areas with apparent high and low rates of mortality.
• Deaths from specific clinical causes, namely epilepsy
and aspiration pneumonia.
• Deaths in specific demographic groups, namely
children and ethnic minorities.
• Deaths in specific conditions, namely Down's
Syndrome, diabetes and obesity.
Local case note review
• Multi-agency including carers and people with LD
• Rich source of locally relevant information
• Resource intensive
• Largely unstandardised
• Depends on quality of records
National case note review
• National/regional panels
• Assesses sample of deaths
• National variations
• Web-based review facility
Findings: Using register data
GPES
• Provides a national LD sample
• Allows data linkage
• Potential for patient identification
• Capacity and confidentiality
• ‘Mild’ LD under recorded
Other data sources
• Individual data contractors
• CPRD
• Local authority data
Data sources to be linked for a
comprehensive register
GP LD
register
data
Other
data i.e.
cancer
registers
National LD
Mortality
Review
Function
MHLDDS
ONS
mortality
data
HES
data
Options
Review function fundamental principles
related work
to
strengthen
process
work with
other
initiatives
long term
initiative
‘graded’
data
collection
Principles
include
people with
LD, families,
carers,
organisations
measure
variation,
impact
local &
national
Option 1 – Balance of local and national
• Robust model of local case note review carried out by
a multi-agency panel, to include people with LD and
families/carers
• Local services, led by local authorities and CCGs, will
identify people with LD who have died
• All cases will be subject to review, leading to lessons
for local services
Option 1 – Balance of local and national
• The national team will:
– identify local leadership
– advise on standardised methods
– record deaths on central database
– develop a web-based national review function
– conduct rolling programme of thematic projects
– examine variation between local areas
Methodology for option 1
All deaths notified by
Collaborative
working of
CCGs and LAs
to be replaced by
GPES extraction
linked with ONS
mortality
Core data on each death recorded by national teams
Local review of all deaths in the area
National thematic review of a sample of cases
Option 1
Advantages
Disadvantages
Already mechanisms for
local collaboration e.g.
SAF
Voluntary participation;
locally resourced
Will develop and
strengthen local review
and learning
Will not be comprehensive
initially
National co-ordination,
standardisation, national
learning
Requires nationally
recruited reviewers and
web-based review facility
Option 2 – Predominantly local
Local review of all deaths in the area
National team function
Standardise
reviews
Receive,
analyse data
Disseminate
recommendations
Option 2
Advantages
Disadvantages
Greater focus on local
service improvement
Greater reliance on
participation of local
services and quality of local
reviews
Avoids time and cost of
setting up web-based
system and expert panel
Reduced capacity for
national learning
Option 3 – Predominantly national
National electronic identification of all LD deaths
Collection of basic data
direct from records
Random national sample of cases
Intensive case note review
conducted centrally
Option 3
Advantages
Disadvantages
Greater reliability, Weaker national-local collaboration
with national team
carrying out
Self-assessment component of case
majority of
review separate from national lessons
reviews
Less dependence National sampling will require a high
on quality of local proportion of local areas to participate
review
Readiness of national datasets
Additional projects
1. Recording of LD and recording causes of death
Joint project with GPs, coroners, hospital doctors to:
• drive better recording, identification of LD on death certificates
• recording more accurately cause of death, including
contributory causes of death
2. Mapping use of reasonable adjustments
Joint project with NHS Benchmarking, LDO to:
• identify markers for further study of mortality predictors
3. GPES test project
Test whether GPES can a) provide core Read coded data items,
b) link with other datasets e.g. ONS & c) extract patient identifiable
data as sampling frame for case note review
Working with other initiatives
Learning Disabilities Observatory (LDO)
Winterbourne View Joint Improvement Programme
Improving Lives Team (NHS England)
NHS Outcomes Framework
Adult Social Care and Public Health Outcomes Framework
The Harris Review – deaths in custody review
Child Health Reviews (CORP)
Care Quality Commission (CQC)
NHS Benchmarking Network
National Institute for Health and Clinical Excellence
The North East & Cumbria Learning Disability Clinical Network
Child Death Overview Panels (CDOP)/Serious Case Reviews