Deaths of people with a learning disability and/or autism in England and Wales over the past 10 years

FOI reference: FOI-2026-3464

You asked

I am writing to request information under the Freedom of Information Act 2000 regarding deaths of people with a learning disability and/or autism in England and Wales over the past 10 years.

This request is made in the public interest to better understand how such deaths are recorded, classified, and investigated, and whether there may be systemic under-recognition or under-investigation.

There is particular concern that some deaths of people with a learning disability and/or autism may not be subject to the same level of scrutiny as those of the general population, particularly where there is no family member or advocate to question the circumstances.

1. Data on Deaths

Please provide:

• The number of deaths of people identified as having a learning disability and/or autism over the past 10 years
• Any available breakdowns by:
  • place of death (e.g. hospital, care home, supported living, private residence)
  • cause of deaths.

2. Recording and Identification

• How does ONS identify whether a deceased person had a learning disability and/or autism?
• What are the known limitations of this data?
• Is there any evidence or assessment of under-reporting, misclassification, or incomplete identification?

3. Coroner Referral and Certification

If held, please provide:

• Any data or analysis on how many deaths of people with a learning disability and/or autism are:
  • referred to a coroner
  • not referred to a coroner.
• Any information on differences in referral rates compared to the general population

4. Preventable / Avoidable Deaths

Please provide:

• Any data held on deaths of people with a learning disability and/or autism classified as:
  • avoidable
  • preventable.
• Any comparisons with the general population

5. Age at Death

Please provide:

• The average age of death for people with a learning disability and/or autism
• Comparative figures for the general population

6. Deaths in Care Settings

Please provide:

• The number of deaths occurring in:
  • care homes
  • supported living settings
  • hospitals
• Any trends or patterns identified in these settings

7. Death Certification and Classification

Please provide any evidence, analysis, or internal discussion regarding:

• inaccuracies in cause of death recording
• deaths attributed to “natural causes” where underlying care-related factors may exist.

8. Cases Without Family Advocacy

Please provide any information, research, or analysis held regarding whether deaths of people with a learning disability and/or autism are:

• less likely to be referred to a coroner
• less likely to be investigated
• less likely to be challenged
• in cases where there is no family involvement or advocacy

9. Inequalities and Systemic Concerns

Please provide any reports, analyses, or internal discussions relating to:

• inequalities in deaths of people with a learning disability and/or autism
• concerns about under-investigation or lack of scrutiny.

10. Data Gaps and Limitations

Please provide any known gaps in national data relating to:

• deaths of people with a learning disability and/or autism
• investigation or follow-up of those deaths
• any recommendations made to improve data collection or oversight

11. Additional Information

Please provide any further information held that may assist in understanding whether deaths of people with a learning disability and/or autism are:

• fully recorded
• consistently investigated
• and accurately reflected in national data

We said

Thank you for your request. 

We are responsible for the production of mortality and births statistics for England and Wales. Our mortality statistics are derived from information collected at death registration. All of the conditions mentioned on the death certificate are coded using the International Classification of Diseases, Tenth Revision (ICD-10). From all of these causes an underlying cause of death is selected using ICD-10 coding rules.  

The underlying cause of death is defined by WHO as:  

a) the disease or injury that initiated the train of events directly leading to death, or
b) the circumstances of the accident or violence that produced the fatal injury  

The death certificate does not explicitly indicate whether a person has a learning difficulty or autism unless the condition contributed to the death. 

We have not previously created an output showing deaths where a learning difficulty or autism contributed to the death. We could create this information for you as a custom output. Information on deaths by cause, age, place of death, and certification type along with other special extracts and tabulations of mortality data for England and Wales are available to order, subject to legal frameworks, disclosure control, resources and agreements of costs.

To discuss this request further, please contact health.data@ons.gov.uk. 

We have not conducted any analysis on deaths of people with learning difficulties as this information is not collected at death registration. Because of this, any figures we can provide where a learning difficulty or autism was mentioned on the death certificate are likely to be an undercount. 

There are some alternative sources who have published reports that may be of interest to you:

Learning difficulties and autism; Mortality and life expectancy - NHS England
An overview of mortality amongst people with a learning difficulty – Welsh Government
Mortality in adults with learning difficulties – British Medical Journal