LeDeR privacy notice

LeDeR is a service improvement initiative commissioned by NHS England and NHS Improvement. Local areas review deaths of people with a learning disability in order to improve the standard and quality of care provided to people with a learning disability. NHS England and NHS Improvement control the data gathered.

Why does LeDeR need to use personal details?

LeDeR needs to know the personal details of people with a learning disability who have died so that their death can be reviewed. We may have to gather information from a number of different services, so we need to make sure that we are collecting information about the right person. We cannot review deaths anonymously because people with a learning disability are usually in touch with several different services (primary and secondary healthcare, physiotherapy, speech and language therapy, community learning disabilities team, care providers etc.) and without identifying them carefully we could set about reviewing the same person more than once, or mismatch information about people with similar profiles. 

LeDeR requires information about the person’s relative or next of kin (name, contact details, relationship), in order to invite them to contribute their views to the review.

Getting personal details about people who have died

LeDeR can be told about the death of a person with a learning disability by anyone holding that information. This could be, for example, a health or care professional, a relative, a service manager or another person with a learning disability. When we are told about a death  personal information about the person who has died will be collected. We will also receive information about the person who has died from health or care professionals who have been involved in supporting that person. The reviewer may ask them questions about the health and care of the person, their diagnosis and treatments, and the circumstances leading up to their death. The reviewer may also need to look in the person’s health or care records to check how their care was delivered.

What personal information does the LeDeR programme collect, and why?

The information that LeDeR collects about people with a learning disability who have died includes:

  • Personal details (this includes for example: name, date of birth, date of death, gender, ethnicity, postcode, NHS number). These details help to identify the person who has died so that a local reviewer can trace their service contacts and conduct a review into their death
  • Information about the circumstances leading to the person’s death and the care they received in their life, that is held in health or social care records, in order to review the person’s care, assess best practice and identify where service improvements may be required
  • Information about the person’s relative or next of kin (name, contact details, relationship), in order to invite them to contribute to the review
  • Information about the person’s cause of death. We send the NHS number (or any other information that could identify the person, e.g., date of birth and date of death) to NHS Digital. NHS Digital link this to information about cause of death held by the Office for National Statistics and tell us what the person has died of

What does LeDeR do with personal information it receives?

We use personal information to be able to conduct reviews into the life and death of people with a learning disability. The purpose of these reviews is to identify if there were any potentially modifiable factors associated with the deaths of people with a learning disability, and to offer suggestions for service improvements that may help avoid premature deaths.

  • We use the NHS number to link the information about people with a learning disability who have died to information about the person’s cause of death which is held by NHS Digital. This process uses the Data Linkage Service at NHS Digital. Patient identifiers are securely transferred to and from NHS Digital for linkage purposes. Once a review has been completed, the review report is redacted. This means that we retain any information that could be important in instigating service improvements if necessary (e.g., the name of the person, the name of any agencies providing care) but delete any other information that could be used to identify the person who has died or people mentioned in the review (e.g., NHS number, date of birth, name of GP, names of family members contributing to the review)

The completed and redacted reviews are stored in a secure data storage facility. Circumstances under which we are allowed to share un redacted personal information include:

  • Where there is an immediate and serious threat to the personal safety of a person
  • Where there is an immediate and serious threat to the safety of others
  • Where there is a legal requirement to disclose that information (e.g., a crime has been committed or it is covered by health and safety legislation)
  • Where professional fitness to practice may be compromised

Who has access to the personal information of people with a learning disability who have died?

Local area contacts (LAC), senior reviewers and reviewers, who are professionals who have received training about the LeDeR process, conduct the reviews of the deaths of people with a learning disability. They will have access to the personal information of the person who has died so that they can do the review.

Some members of the LeDeR team coordinating the review process will also have access to the personal information so that they will be told when someone has died, tell the relevant LAC and reviewer, check the completeness of the review, and then anonymise it. The name and contact details of the LACs, senior reviewers and reviewers are shared within LeDeR for this purpose.

NHS Digital will receive the NHS numbers of people who have died in order to categorise the person’s death in line with standard categories.

What is the legal basis for the LeDeR programme to use information?

Use of the data for the purposes detailed in this notice is approved under Section 251 of the NHS Act 2006.

This is also the legal basis for processing contact details of family, next of kin, friends. Articles 6(1)(e) and 9(2)(h) of UK GDPR apply.

How long is personal information stored for?

Once a review of a death is complete, the redacted documentation is stored for 10 years, to enable learning points from the case reviews.

National Data Opt Out

The national Data Opt Out scheme allows people to opt out of having their personal information shared for purposes other than the direct provision of their care and treatment. If a person has registered their wish to opt out in this way, we will not carry out a LeDeR review.

Information rights of people involved with LeDeR

Right to be Informed

Any living person whose personal information is used by LeDeR (e.g., the next of kin of a deceased person) has the right to be informed about the collection and the use of their personal data. This privacy notice confirms the information that LeDeR uses.

Right of Access

Any living person whose personal information is used by LeDeR(e.g., the next of kin of a deceased person) has the right to obtain a copy of personal data that we hold about you https://ico.org.uk/your-data-matters/

Right to rectification

You have the right to ask us to rectify any inaccurate data that we hold about you.

Right to erasure (‘right to be forgotten’)

Any living person whose personal information is used by LeDeR (e.g., the next of kin of a deceased person) has the right to request that we erase personal data about you that we hold. This is not an absolute right and depends on the legal basis that applies, or we may have overriding legitimate grounds to continue to process the data.

Right to restriction of processing

Any living person whose personal information is used by LeDeR (e.g., the next of kin of a deceased person) has the right to request that we restrict processing of personal data about you that we hold. You can ask us to do this for example where you contest the accuracy of the data.

Right to data portability

This right does not apply to information processed by LeDeR.

Right to object

Any living person whose personal information is used by LeDeR (e.g., the next of kin of a deceased person) has the right to object to processing of personal data about you on grounds relating to your particular situation. The right is not absolute, and we may continue to use the data if we can demonstrate compelling legitimate grounds.

Rights in relation to automated individual decision-making including profiling.

Any living person whose personal information is used by LeDeR (e.g., the next of kin of a deceased person) has the right to object to being subject to a decision based solely on automated processing, including profiling. Should we perform any automated decision-making, we will record this in our privacy notice, and ensure that you have an opportunity to request that the decision involves personal consideration. LeDeR does not carry out profiling and does not use data in this way.

Right to complain to the Information Commissioner

Any living person whose personal information is used by LeDeR (e.g., the next of kin of a deceased person) has the right to complain to the Information Commissioner if you are not happy with any aspect of the processing of personal data or believe that we are not meeting our responsibilities as a data controller. The contact details for the information commissioner are:

Information Commissioner’s Office
Wycliffe House
Wilmslow
SK9 5AF

Website: ico.org.uk

More information

For more information about LeDeR or to access your own personal information please contact the LeDeR team at This email address is being protected from spambots. You need JavaScript enabled to view it.:

NHS England and NHS Improvement’s Data Protection Officer is:

Carol Mitchell
Head of Corporate Information Governance and Data Protection Officer
Transformation & Corporate Operations Directorate
NHS England and NHS Improvement
Quarry House
Quarry Hill
Leeds
LS2 7UE

To contact the Data Protection Officer for NHS England please E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.