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: 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? 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?

Findings

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 Stakeholder themes

Lessons from NCISH NCISH Balance of local and national data ‘Graded’ data collection Rolling programme of priority topics Assessing the impact of service change

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 ONS mortality data HES data MHLDDS Other data i.e. cancer registers National LD Mortality Review Function

Options

Review function fundamental principles Principles long term initiative ‘graded’ data collection measure variation, impact local & national include people with LD, families, carers, organisations work with other initiatives related work to strengthen process

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 Core data on each death recorded by national teams Collaborative working of CCGs and LAs Local review of all deaths in the area National thematic review of a sample of cases GPES extraction linked with ONS mortality to be replaced by

Option 1 Advantages Already mechanisms for local collaboration e.g. SAF Will develop and strengthen local review and learning National co-ordination, standardisation, national learning Disadvantages Voluntary participation; locally resourced Will not be comprehensive initially Requires nationally recruited reviewers and web-based review facility

Option 2 – Predominantly local Standardise reviews National team function Local review of all deaths in the area Receive, analyse data Disseminate recommendations

Option 2 Advantages Greater focus on local service improvement Avoids time and cost of setting up web-based system and expert panel Disadvantages Greater reliance on participation of local services and quality of local reviews 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 Greater reliability, with national team carrying out majority of reviews Less dependence on quality of local review Disadvantages Weaker national-local collaboration Self-assessment component of case review separate from national lessons National sampling will require a high proportion of local areas to participate 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