Guidance

Guidance for managing untraceable people with diabetes on providers’ cohort database

Updated 17 October 2024

1. Introduction and scope

The database of people with diabetes who are eligible for diabetic eye screening (DES) in England is available on GP registration systems. Local screening services can access it electronically through the GP2DRS IT system, or by requesting a copy from the GP practice.

Eligible individuals remain on the local service register until they are no longer part of the local service cohort – for example if they have moved away from the area or died. These individuals then become ‘off register’ and should be managed in accordance with the consent and cohort management guidance.

People with diabetes may not need to attend routine digital screening while under the care of ophthalmology or being seen in surveillance clinics, but they remain eligible unless they meet the ‘off register’ criteria.

Each year, local screening services will recall many individuals for screening who are no longer registered with a GP in England and are ‘untraceable’. Many of these individuals may no longer live in England.

Providers should use this guidance to manage untraceable individuals. It’s only applicable in cases where an individual is no longer registered with a GP in England.

Individuals registered with a GP in England but living elsewhere for an extended period are not considered ‘untraceable’ and services should continue to invite these people for screening. GP practices are responsible for providing local services with current addresses for people with diabetes registered with their practice.

2. Guidance

If an individual is no longer registered with the GP shown on the screening service register, the service must make every effort to trace the individual by:

• contacting the GP
• checking the NHS spine and local registration systems

Services should also check with any hospital eye service (HES) or diabetes department where the individual has had regular appointments.

All actions must be recorded in the individual’s electronic record. Individuals remain eligible for screening for 12 months from the date the investigations started.

Providers should continue to try to trace the individual during this period and all attempts to do so must be recorded in their notes on the DES database.

If there is no further information from the GP after 12 months and the NHS spine does not show the individual has registered with another GP practice in England, the individual’s status should be changed to ‘off register’ due to ‘moved out of area’ with a note in the electronic record showing the individual as ‘untraceable’. The service should write to the individual’s last known GP to notify them of this action. A standard letter template is included as part of this publication.

3. Software and data implications

There is no current item in the software provider dataset which relates to individuals no longer registered with a GP.

An untraceable person with diabetes would need to be given the status of ‘off register’ using the ‘moved out of area’ category with a clear note on the individual electronic record relating to all action taken to trace the individual. The individual will not be included in the service register.

There is no way of differentiating in the software reporting outputs between a person who has moved out of area to another service and one who is untraceable. All are classed as ‘moved out of area’.

Services should keep a record of individuals marked as ‘untraceable’ for audit purposes.