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? CausePotential 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- health Routine health checks

14. 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?

15. Why do people have poorer health? o Poverty and material disadvantage o Poverty causes poorer health o Poverty is a cause of (especially mild) learning disability o Learning disability may increase the risk of poverty

16. What Does (or Should) Work? CausePotential Solution(s) PovertyFamily support (welfare benefits, enabling parents to work) Build the resilience of children and adults with learning disability (and their families)

17. 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

18. What Does (or Should) Work? CausePotential Solution(s) Discrimination in health care systems Following the law ‘Reasonable adjustments’ (more accessible information, longer appointment times) Discrimination in everyday life Anti-bullying strategies People being part of their community

19. 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?

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