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This page was written by

Gyles Glover


of the Health and Care project

The Learning Disabilities Observatory is working on a new project , the Health and Care Project. The aim is to get a more detailed understanding of the health of people with learning disabilities in each part of the country, the care they get and how this compares to the health and care of people who don't have learning disabilities. We are working on this with the Health and Social Care Information Centre.

The programme will ask about each local area where the NHS provides care. These are called Clinical Commissioning Groups. It will collect information about how many people there are with (and without) learning disabilities in each area.

It will then ask about:

  • general health measures
  • regular health checks and immunisations
  • some conditions that are important for people with learning disabilities
  • health problems important for everyone
  • how well some key illnesses are being managed

It will also ask how much difference there is in care for people with learning disabilities and other people.

The information will help Clinical Commissioning Groups and other health and social care planners to make sure they look after people with learning disabilities as well as other people.

How we will do this?

GPs keep lists (registers) of people they look after who have a learning disability. We know about the total numbers they find because the Health and Social Care Information Centre 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. The Information Centre arranges to send the query to every GPs computer. If the GP agrees, their computer sends back the answer automatically. For this programme the Health and Social Care Information Centre has arranged to send some questions about numbers of people with important health conditions. Most of these questions are already regularly asked about all people. We are asking them particularly about people with learning disabilities.

What questions are being asked?

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.

Will this give any information about individual people?

No. We are not asking any questions about either individual patients or individual GPs. All our questions are about how many people there are in the Clinical Commissioning group area who have particular characteristics.

The Health and Social Care Information Centre will get this information from individual general practices. This is the same as they do for regular quality measures. But these numbers about individual practices would be too small for us to use. So the Health and Social Care Information Centre will group these up for whole Clinical Commissioning Groups. We will only get numbers at this level.

Has this been properly approved?

The Health and Social Care Information Centre has a group to look at requests for information. They check that they are appropriate and don’t risk disclosing anyone’s personal information. They approved this in April 2015.

When is this happening?

The requests for the data went to General Practices in October 2015. The Health and Social Care Information Centre had planned to give it to us in November 2015 but following unavoidable delays the extractions are likely to be done in December. We will be publishing the findings early in 2016.

Preliminary findings

Below is a set of slides with some preliminary findings from this new data set.

IHaL conference presentation about GPES data
PDF Ihal conference presentation
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