Health and Care of People with Learning Disabilities Experimental Statistics 2019 to 2020

The outbreak of Coronavirus (COVID-19) has led to unprecedented changes in the work and behaviour of GP practices and consequently the data in this publication may have been impacted, including indicators and contextual data from patients registered at a GP Practice.

The data is extracted through the General Practice Extraction Service (GPES) therefore the burden of the Coronavirus (COVID-19) outbreak has not affected the collection of data for this publication.

Caution should be taken in drawing any conclusions from this data without due consideration of the circumstances both locally and nationally as of 1 January 2020 and NHS Digital would recommend that any use of this data is accompanied by an appropriate caveat.

Experimental Statistics are series of statistics that are in the testing phase and not yet fully developed for several reasons such as:

• Poor coverage
• Poor data quality
• Data is undergoing evaluation

Customers should be aware of the status and constraints of this data. The limitations of each measure are explained in the accompanying information in the publication.

This publication is classified as experimental statistics due to limitations in practice coverage. The publication includes data from participating practices using EMIS, Cegedim Healthcare Systems (formerly Vision) and EVA Health Technologies (formerly Microtest) GP systems. No data has been provided by TPP which accounts for around 40% of practices.

More information on experimental statistics can be found in:

ONS Guide to Experimental Statistics

GSS Guidance on Experimental statistics

NHS Digital regularly solicit feedback for users its publications which are experimental statistics to help further development. Feedback can be provided using this link

This publication aims to highlight health inequalities that could lead to the difference in mortality rate and health outcomes between those individuals with a learning disability and those without.

The main stakeholders are Public Health England, NHS England and Improvement and The Department of Health and Social Care.  NHS Digital have worked closely with all three to ensure the data collected and presented in this publication is the most useful and appropriate for policy makers and commissioners.  We also work closely with several charities and academics to ensure the contents of the publication meet the needs of as many users as possible. 

System suppliers play an important role, translating the specifications into code for their systems and managing the submission of queries to practice systems and collecting responses. Data is only collected from practices using EMIS, Cegedim Healthcare Systems (formerly Vision) and EVA Health Technologies (formerly Microtest).  No data is collected from practices using TPP.  This causes a gap as practices using TPP account for approximately 40% of practices.

Practice participation in this collection is voluntary, meaning practices must participate to give consent for data to be collected. The total national coverage for this publication each year is approximately 50%. Details of exact participation can be found in each year specific publication.

Data quality is generally considered to be very good for all GPES extracts.  The data that is collected is 100% complete due to it being an automated extract.

CCG patient coverage for each year is provided as a csv in the publication. There are a number of CCGs who have a patient coverage greater than 100%. This is due to the denominator being sourced from a different dataset (patients registered at a GP Practice) as it is not available in the data collected for this publication. In addition, data for earlier years is remapped to current CCGs to make the dataset more usable for comparative purposes. The percentage of participating CCGs with a coverage greater than 100% is shown in the table below.

Table 1: Percentage of participating CCGs with patient coverage over 100%

Data from the previous financial year (e.g. 1st April 2019 to 31st March 2020) is extracted from GP practice systems via GPES each year, with the exception of 2019-20 when five years worth of data was extracted due to a change in indicators (see Coherence and Comparability for more details) . The extraction period lasts approximately 10-14 days and is usually in October. NHS Digital aim to begin analysis in November and publish in January of the following year.

In 2019-20 nine indicators were retired LDOB005; LDOB007; LDOB008; LDOB0053; LDOB0054; LDOB0073; LDOB0074; LDOB0075 and LDOB0076. They related to Health Checks, BMI assessments, Diabetes Mellitus and Angina.

Sixteen new indicators were introduced LDOB077; LDOB078; LDOB079; LDOB080; LDOB081; LDOB082; LDOB083; LDOB084; LDOB085; LDOB086; LDOB087; LDOB088; LDOB089; LDOB090; LDOB091; LDOB092. These relate to Autism, Health Checks, Antipsychotic prescribing, Benzodiazepine prescribing, prescribing of epilepsy drugs, Antidepressant prescribing and Attention Deficit Hyperactivity Disorder (ADHD).

Fourteen of the new indicators were introduced to monitor the prescription of medication to patients with a learning disability to support the NHS STOMP (stopping over medication of people with a learning disability, autism, or both) campaign.

“Research studies using general practice data in the Clinical Practice Research Datalink indicate that prevalence of use of antipsychotic and antidepressant drugs in adults with learning disabilities around 17% (Glover et al, 2015). This is substantially more than the levels appropriate to treatment of mental health problems and is thought to arise from clinically inappropriate approaches to managing behaviour.”

LDOB005 has been superseded by LDOB079 and LDOB080 and are not comparable due to a change in the definition and introduction of age criteria, to align these indicators with the Quality and Outcomes Framework (QOF) data.

More information on the indicators can be found in the Business Rules.

Data for the years 2015-16, 2016-17, 2017-18, 2018-19 and 2019-20 has been extracted in October 2020 to take account of changes in the indicators.

Year on year comparisons with 2015-16, 2016-17, 2017-18, 2018-19 and 2019-20 data shows minor variations within individual indicators. A small number of indicators show greater variation across the time series and are highlighted in the accompanying webpage. It is important to note that some differences may be due to changes in practice participation or how data is recorded within practices, but it is not possible to say how much variation is due to this.

This publication does not include sections on 'Life Expectancy' and 'Mortality' due to issues in obtaining mortality data. Analysis on the excess mortality indicator and life expectancy comparisons will be published at a future date when the data becomes available.