Improving Health & Lives

1. Improving Health & Lives Learning Disabilities Observatory www.ihal.org.uk

2. Improving Health & Lives • Two DH funded initiatives • Learning Disabilities Observatory • Confidential Inquiry • Three-year projects

3. We Are • North East Public Health Observatory • Centre for Disability Research • National Development Team for Inclusion

4. 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

5. Making Information More Easily Available • Website • Special reports (plus summaries, media engagement) • Events

6. 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

7. 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

8. Helping People Make Better Use of Information • Working with partners in six pilot sites • Calderdale • Cornwall • Kent • Nottinghamshire • Westminster • Sheffield

9. Helping People Make Better Use of Information • Commissioning Guidance • Health Inequalities • Health checks • Reasonable adjustments

10. Advisory groups • People with learning disabilities and family carers • Wider stakeholder group • International

11. 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?

12. 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

13. What Does (or Should) Work?

14. 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?

15. 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

16. What Does (or Should) Work?

17. 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

18. What Does (or Should) Work?

19. 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?

20. 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?

21. www.ihal.org.uk