Post on 20-Dec-2015
Improving Health & Lives
Two DH funded initiatives Learning Disabilities ObservatoryConfidential Inquiry
Three-year projects
We Are
North East Public Health ObservatoryCentre for Disability Research National Development Team for Inclusion
Observatory Aims
Improve the health of (and reduce health inequalities experienced by) people with learning disabilities in England Helping people who commission services make better use of information
Making Information More Easily Available
WebsiteSpecial reports (plus summaries, media engagement)Events
Making Information More Easily Available
Special reports (plus summaries, media engagement)Defining ‘learning disabilities’ Uptake of annual health checksOverview of health inequalitiesEffectiveness of health checksEstimating local needUse of learning disabilities registersAnnual overview
Working Toward Having Better Information
Measuring disability in large-scale health & social surveysIncluding markers for disability in administrative data setsHospital Episode StatisticsCancer registriesPractice-based registers
Helping People Make Better Use of Information
Working with partners in six pilot sitesCalderdaleCornwallKentNottinghamshireWestminsterSheffield
Helping People Make Better Use of Information
Commissioning GuidanceHealth InequalitiesHealth checksReasonable adjustments
Advisory groups
People with learning disabilities and family carersWider stakeholder groupInternational
What do we know about health and people with learning disabilities?
We know from research that people with learning disabilities:Do not live as long as the general populationHave more sensory and physical impairmentsHave poorer physical healthHave poorer mental health
We know there is little or no effective monitoring in health information systems
Q1: How can we better monitor the health of people with learning disabilities at a local level?
Why do people have poorer Health?
Causes to do with having a learning disability Syndrome-specific risks (e.g., hypothyroidism in Down syndrome, overeating in Prader-Willi syndrome)Communication difficulties resulting in the failure to (or delay in) identifying illness and/or accessing health care
What Does (or Should) Work?
Cause Potential Solution(s)
Syndrome-specific risks
Document and share knowledge Targeted screening programmes & medical intervention
Communication difficulties
Help families and child care workers identify signs of ill-healthRoutine health checks
Health Checks
o Good evidence that health checks are effective in identifying unknown illness
o Less than half of all people eligible got a health check in 2009/10
o Directed Enhanced Service continuing
o We don’t know if health checks improve health
Q2: How can we improve the local uptake and impact of health checks?
Why do people have poorer health?
o Poverty and material disadvantageo Poverty causes poorer
healtho Poverty is a cause of
(especially mild) learning disability
o Learning disability may increase the risk of poverty
What Does (or Should) Work?
Cause Potential Solution(s)
Poverty Family support (welfare benefits, enabling parents to work)Build the resilience of children and adults with learning disability (and their families)
Why do people have poorer health?
o Discrimination o People with learning
disability face discrimination (systemic and at times overt) in health care systems
o People with learning disability face discrimination in their daily lives
What Does (or Should) Work?Cause Potential Solution(s)
Discrimination in health care systems
Following the law‘Reasonable adjustments’ (more accessible information, longer appointment times)
Discrimination in everyday life
Anti-bullying strategiesPeople being part of their community
Summary
o Extensive evidence (though little ongoing monitoring) of poorer health status of people with learning disabilities
o Evidence that this is (to an extent) avoidable, unjust and consequently a violation of people’s right to health and life
o Causes are complex and varied, including both biological and social determinants of (poorer) health
Q3: Locally, how can we address the broader social determinants of the poorer health of people with learning disabilities?
Questions
Q1: How can we better monitor the health status of people with learning disabilities at a local level?
Q2: How can we improve the uptake and impact of health checks?
Q3: How can we address the broader social determinants of the poorer health of people with learning disabilities?