Monitoring the Public Health Impact of Health Checks for Adults with a Learning Disability in Wales

1. Monitoring the public health impact of health checks for adults with a learning disability in Wales Judith Tomlinson / Laura Beer

2. People with Learning Disabilities • die sooner than non-disabled people • are ill more often • face difficulties accessing the primary health care that they need • have demonstrated inequalities in access to health promotion and screening services1 1Disability Rights Commission. Equal Treatment: Closing the Gap. A formal investigation into physical health inequalities experienced by people with learning disabilities and/or mental health problems. Parts 1 and 2. September 2006. (now Equality and Human Rights Commission)

3. Learning Disabilities Research Project • The LD Research Project commenced in April 2007which included a number of stakeholders: • WAG • NPHS (Vulnerable Groups / PCQIS) • Wales Centre for Learning Disabilities Cardiff University • Learning Disability organisations • GPs • LHBs • Social Services

4. Background • It was agreed in April 2006 that primary care based, annual health checks for adults with a learning disability on local authority registers, were to be introduced in Wales as a directed enhanced service (DES). This service was designed to address the inequalities in health care experienced by people with a learning disability. Such annual health checks were widely supported by patient and carer groups and research evidence • In April 2007 Welsh Assembly Government funded a proposal submitted by the National Public Health Service (NPHS) and Welsh Centre for Learning Disabilities (WCLD) tomonitor and evaluation the initiative over a three year period

5. Purpose of the research project • monitor the delivery/uptake of annual health checks for adults with a learning disability • investigate their quality, • provide feedback on implementation to the WAG and to LHBs • Project to be completed by March 2010

6. Project answered 5 key questions Question 1: What proportion of adults on local authority learning disability registers receive an annual health check? Question 2: How does the proportion of adults on local authority learning disability registers receiving an annual health check vary across LHBs and general practices? Question 3: Is such variation sufficiently large and consistent over time to indicate differential performance (i.e., good practice or underperformance). Question 4: What variation in the health of adults receiving a health check is shown by the health indicators investigated during the check? Question 5: What is the experience of those who have received an annual health check?

7. Phase 1 – Uptake of health checks in 2006/07 • WAG provided data on the number of invitations for health checks sent to adults on learning disabilities registers, and the number of health checks which were completed • Of the estimated 10,000 people aged 18 and over on learning disability registers in Wales in 2006/7, 6450 were invited to have a health check, and 2910 health checks were undertaken • Data on the number of health check invitations sent by GP practices were available for only 15 of the 22 LHBs and data on completed health checks were not available for two LHBs

8. Phase 1 - results • There was wide variation between LHBs in the rates of invitations issued e.g. everybody on the register in Caerphilly LHB was invited compared with 55% of those on the register in Merthyr Tydfil. (This range is surprising in view of the DES status of health checks in the year in question.) • Of those who received an invitation, around one third actually received a health check. As with the invitations issued, there was wide variation between LHBs in the ‘take-up’ rate. • The proportion of those on the register aged 18 and over who had a health check averaged just under one third (32%). The likelihood of receiving a health check was related strongly to where people lived e.g. around two thirds of those living in Torfaen, Conwy and Swansea LHB areas received a health check compared with 5% or fewer of those living in Rhondda Cynon Taff and Merthyr Tydfil LHB areas.

9. Qualitative study • A qualitative study on the subjective views of people with learning disabilities on health checks will commence in 2008. Focus group investigations have been conducted - convened and facilitated by experienced people from All Wales People First • In total 54 people attended the meetings of whom 39 had learning disabilities (17 women and 22 men).

10. Qualitative study - cont • those who participated in the focus groups shared their experiences and points of view very effectively. • participants appreciated the importance of health checks and valued the opportunity to have them. • Overall, people were positive about the experience. • Respondents offered constructive criticism together with practical suggestions about ways in which the health check process could be improved which has been reported to WAG

11. Phase 2 – electronic process • To develop a LD quality improvement toolkit to support the DES for GPs, which includes: • read codes and data entry templates for practices to enter the information contained within the health check • Use Audit+ software to extract data from 96% of Welsh GP practices (Oct/Nov 08)

12. Audit+ software • Automated extraction of data will be sent monthly to LHBs and NPHS for analysis and comparative evaluation to continuously improve health for people with learning disabilities Audit+ demo