The first report of information from the Learning Disabilities Health and Care project was published by our partners NHS Digital on 9th December 2016. You can download the report here.
The first round of the exercise obtained data from GP practices about the health and care of just over half of the people in England known to their GPs as having a learning disability. For most parts of the country it provides a much more detailed understanding than has been available before. In many cases the health of people with learning disabilities is compared to that of people who don't have learning disabilities.
The programme can provide specific details about each local area where the NHS provides care. These are called Clinical Commissioning Groups. NHS Digital has provided an Interactive Tool which gives data about local areas.
The first round of data does not provide good information about all areas. The data are collected from consenting practices by the companies that supply their practice clinical information systems. There are four companies. We obtained data through three of these but were unable to get data through the fourth because the price requested was unrealistically high. Areas where this supplier provides the infromation systems for most or all practics are under-represented or absent from the statistics.
GPs keep lists (registers) of people they look after who have a learning disability. We know about the total numbers they find because NHS Digital asks for this number from all GPs every year. This does not take a lot of time for GPs because they keep all their records on computers. NHS Digital arranges to have an automated query to each GP practice's. computer system. If the practice authorises the query, their computer sends back the answer automatically.
The programme does not ask for information about individual patients. It only asks how many people in various age and sex groups in each GP practice have particular combinations of problems. These numbers are grouped up further in the secure data warehouse at NHS Digital so that the only data available to the Public Health England are totals of these for all the responding practices in each CCG.
A full list of the questions we are asking is on the next page. They cover numbers of people with and without learning disabilities in the population, general health measures, health checks and immunisations, health problems particularly important for people with learning disability, health problems that are common and important for everyone and management of illnesses.
NHS Digital has a group to examine requests for information. They check that they are appropriate and don’t risk disclosing anyone’s personal information. They approved this request in April 2015. The documents relating to this are on the NHS Digital Independent Advosory Group documents page under the heading Learning Disabilities Observatory.