Review of existing sources of evidence about people with Learning Disability

Derek King, Chris Hatton, Raphael Wittenberg, & Jose Luis Fernandez

March 2023

INTRODUCTION

Our paper lists sources of information or data on people with learning disabilities in England of whom, Public Health England data suggests, there are just over one million. We hope this list can be used to find data that can be analysed to better understand the long-term care and support that people with learning disabilities currently receive and what they need. It is part of a larger project which aims to improve existing evidence about the needs and support services for people with LD and describe and compare different ideas for improving the lives of people with learning disabilities.

DATA SOURCES

None of the data sources include information that can be used to identify individuals. Typically, each person, in each data source is assigned a number only and their names and any other information that could be used to identify them is not included. Some data is reported at local authority or council level only. Some of the data sources are surveys that we have used in the past in our research.

The data sources we found come in different forms:

data collected on a random group of adults across England at a particular time (for example, the Personal Social Services Adult Social Care Survey which asks people who receive social care from their local council if the services received are helping them to live safely and independently and the effect of receiving services on their quality of life)
data collected at regular time points from the same group of individuals (for example, the Next Steps Study which provides information on things like home life and employment changes for young people with learning difficulties as they become adults
data collected routinely by GPs (for example, the Clinical Practice Research Datalink) or councils (for example, the Health and Care of People with Learning Disabilities Experimental Statistics which has information, for each local authority or council, on the health of the people with learning disability in their area).

The Coronavirus pandemic tragically illustrated the harm that can result from not being able to respond to the needs of those with learning disability to the same extent as for the general population. Public Health England1 reported in November 2020 that people with learning disabilities had a death rate from Covid-19 that was six times higher than the general population. This estimate was based on the Learning Disability Mortality Review and NHS England’s Covid-19 Patient Notification System. Public Health England1 noted that the death rate from Covid-19 among people with learning disability may have, in fact, been even higher because not all deaths of people with learning disabilities are registered on these datasets.

Quite rightly, all data on people with learning disabilities are strictly protected. Many of the datasets require an application to systems, such as the NHS Digital Access Request Service, that review the applicant’s privacy and secure electronic data storage arrangements. At the same time, further research is very important to help policy makers and service providers identify and meet the needs of people with learning disability.

Note:

Public Health England has been replaced by UK Health Security Agency and Office for Health Improvement and Disparities within the Department of Health and Social Care.

FURTHER INFORMATION

Derek King, d.king@lse.ac.uk

Back