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Improving Health & Lives. Learning Disabilities Observatory www.ihal.org.uk. Improving Health & Lives. Two DH funded initiatives Learning Disabilities Observatory Confidential Inquiry Three-year projects . We Are. North East Public Health Observatory Centre for Disability Research
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Improving Health & Lives Learning Disabilities Observatory www.ihal.org.uk
Improving Health & Lives • Two DH funded initiatives • Learning Disabilities Observatory • Confidential Inquiry • Three-year projects
We Are • North East Public Health Observatory • Centre 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 • Website • Special reports (plus summaries, media engagement) • Events
Making Information More Easily Available • Special reports (plus summaries, media engagement) • Defining ‘learning disabilities’ • Uptake of annual health checks • Overview of health inequalities • Effectiveness of health checks • Estimating local need • Use of learning disabilities registers • Annual overview
Working Toward Having Better Information • Measuring disability in large-scale health & social surveys • Including markers for disability in administrative data sets • Hospital Episode Statistics • Cancer registries • Practice-based registers
Helping People Make Better Use of Information • Working with partners in six pilot sites • Calderdale • Cornwall • Kent • Nottinghamshire • Westminster • Sheffield
Helping People Make Better Use of Information • Commissioning Guidance • Health Inequalities • Health checks • Reasonable adjustments
Advisory groups • People with learning disabilities and family carers • Wider stakeholder group • International
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 population • Have more sensory and physical impairments • Have poorer physical health • Have 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
Health Checks • Good evidence that health checks are effective in identifying unknown illness • Less than half of all people eligible got a health check in 2009/10 • Directed Enhanced Service continuing • 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? • Poverty and material disadvantage • Poverty causes poorer health • Poverty is a cause of (especially mild) learning disability • Learning disability may increase the risk of poverty
Why do people have poorer health? • Discrimination • People with learning disability face discrimination (systemic and at times overt) in health care systems • People with learning disability face discrimination in their daily lives
Summary • Extensive evidence (though little ongoing monitoring) of poorer health status of people with learning disabilities • Evidence that this is (to an extent) avoidable, unjust and consequently a violation of people’s right to health and life • 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?
