NHS England has directed NHS Digital to collect and analyse data in connection with the Learning Disabilities Observatories GPES Extract Data Collection Directions 2018. However, from August 2020 the collection is now known as the Learning Disabilities Data Extract (LDD). This is because the Learning Disabilities Observatory is no longer an organisation within Public Health England (PHE). This means the LDD programme of work has moved departments from PHE to NHS England and NHS Improvement (NHSE & NHSI).
Research shows that people with learning disabilities have poorer health, and receive poorer healthcare, than people without learning disabilities. Legislation requires that public bodies, including providers of health and social care, monitor their performance in identifying and addressing these issues.
In 2008, an Independent Inquiry into Access to Healthcare for People with Learning Disabilities recommended that “all healthcare organisations, including the Department of Health and Social Care (DHSC) should ensure that they collect the data and information necessary to allow people with learning disability to be identified by the health service and their pathways of care tracked.” DHSC accepted this recommendation and work started on the data collection in support of this.
The data are to support production of a range of primary care indicators covering care quality for people with a learning disability. The data will be used for the benchmarking and quality improvement of primary care provision for people with learning disabilities.
The data is used to support improved commissioning and delivery of healthcare for people with learning disabilities. The key benefit NHSE & NHSI expects to achieve will be improved data which will provide a spur to improve healthcare for people with learning disabilities. This is expected to follow over a time span of four to five years with regular annual data collection and publication.