Guidance

Diabetic eye screening: managing the screening register

Updated 27 September 2024

Applies to England

It is the responsibility of every local eye screening service to have a register of people with diabetes eligible for screening – known as the single collated list (SCL). Identification of the diabetes cohort from GP practices to the screening service is described in the national service specification.

This guidance sets out who should and who should not be included on the SCL.

1. Background

GP2DRS (general practice to diabetic retinopathy screening) is overseen and commissioned by Public Health England (PHE) and supports the electronic sharing of data between GP practices and screening services for people with diabetes.

All diabetic eye screening services within England should use GP2DRS, and receive a monthly update from GP practices. Services rely on GP practice cohort data to identify people with diabetes who are eligible for screening. Once identified by GP2DRS to the screening service, this information is maintained on the SCL which the service then uses to manage call and recall functions.

Some GP practices may refer people with diabetes manually as well as using GP2DRS.

Correct coding of people with diabetes within the GP practice system is essential for the individual to be included in the GP2DRS monthly extract.

An update to the National Institute for Health and Care Excellence (NICE) guidance in July 2016 recommends all referrals for diabetic eye screening should be made immediately on diagnosis of diabetes to ensure the person is screened within 3 months.

2. Factors for consideration

The service completes validation checks on the monthly data received to ensure all individuals have been referred from the GP and are included within the extract from GP2DRS. The service should:

• cross-reference their ‘programme cohort export’ file received from GP2DRS against the SCL
• review the monthly ‘patient participation report’ and ‘duplicate patient report’, along with any programme files provided by GP2DRS that month

The service should investigate where there are discrepancies between the SCL and the GP2DRS extract. It should be noted that it is not uncommon for there to be some monthly differences due to new referrals, deceased notifications and demographic changes.

2.1 Unknown individuals

When there are large numbers of individuals unknown to the service and not included on the SCL, this should be considered as a potential screening safety incident and investigated. There are various reasons why there may be large numbers of discrepancies, including:

• incomplete or irregular GP participation with GP2DRS
• incorrect coding of people with diabetes in the GP practice system
• lack of resource within the service to complete the monthly validation checks
• historical records on the SCL that have not been audited
• the transfer of the SCL from one provider to another

Services should follow national guidance on reporting and managing screening incidents and inform the Screening Quality Assurance Service (SQAS) and commissioners of all suspected incidents.

Depending on the severity of the incident, it may be appropriate to declare a serious incident and manage this in accordance with the NHS England Serious Incident Framework.

Services and commissioners should make decisions on categorisation and handling of an incident with advice from SQAS.

A summary of the facts should be documented and communicated to the commissioner and provider if the incident happened solely outside the screening pathway, such as in a GP practice. This is so the commissioner or provider can organise the investigation and management of the incident.

2.2 Missing individuals

The service may have people included on the SCL who should not be invited for screening. These people may have been incorrectly referred to the service and are not included in the monthly GP2DRS extract because they do not have a current diabetes diagnosis code on their patient record. This cohort is referred to as ‘missing individuals’ because they are ‘missing’ from the GP2DRS extract.

Services should complete validation checks on missing individuals directly with the GP practice where they are registered to check whether the person has diabetes and make sure the correct diabetes code is assigned to their medical record so that they are included in future GP2DRS extracts.

If local services have missing individuals, they should inform SQAS and commissioners of the number not on their GP2DRS extract. They should also share their local process for confirming eligibility before removing individuals from their local screening database.

The standard operating procedure (SOP) should include:

• a minimum of 2 attempts by the service to find out if the person has diabetes and is eligible for screening
• a process for positive acknowledgement from the GP – for example, an email ‘read receipt’ or notes from a conversation, to evidence that correspondence has been read
• a process for escalation to local commissioners of any non-responding GP practices

Any person removed from the SCL should have detailed evidence documented in their electronic record before their status is changed to not diabetic (off-register). The GP practice should be advised of the removal from the SCL. It is a local decision whether the individual being removed receives a copy of this letter.

Where a person has actively engaged with the service, the clinical lead should complete a clinical review to assess if the person is eligible for screening and remain on the SCL. Active engagement means where they have previously attended for screening and have had a previous retinopathy grade outcome. If the clinical review confirms the person can be removed from the SCL, this should be communicated to the individual and their GP.

In cases where a clinical review has confirmed a person is eligible for diabetic eye screening, the service and commissioners will need to escalate this with the GP to make sure the correct diabetes code is applied to the patient record and the person is included in the monthly GP2DRS extract.

2.3 Service reprocurement or reconfiguration

Services that have recently been through a reprocurement or reconfiguration process may face challenges in obtaining cohort data. GP practices may not release the monthly extract to GP2DRS due to a misunderstanding of consent with a ‘new’ service, an incomplete data sharing agreement or a change to the GP practice boundary.

There are often concerns about transferring data to private sector providers of NHS services. However the requirements for these services are identical to those for NHS providers.

Further information can be found in the Procurement guide for commissioners of NHS-funded services.

3. Managing single collated list (SCL) incidents

When deciding if the issue constitutes a screening safety incident or a serious incident, consider the degree of risk and the likelihood of the situation being rectified. In particular, consider:

• the number of people missing from the SCL per GP practice and the length of time they have not been screened
• the number of people unknown to the SCL for the whole service proportional to service size
• if there has been a systematic failure of processes or operational issues resulting in unknown individuals
• what the impact of the incident will be on service capacity
• the impact of the incident on the services ability to refer into hospital eye services (HES)
• reputational damage resulting in loss of confidence in the service

Declare a serious incident (SI) when there is actual or potential avoidable severe harm, or the likelihood of reputational damage to the provider. A ‘near miss’ can be a serious incident when there is a significant existing risk of a system failing.

If it appears that serious or permanent reduction in a person’s vision may have taken place as a result of the delay in screening, the service’s clinical lead or lead consultant ophthalmologist should conduct a clinical review assessment.

The provider organisation should consider whether the circumstances meet the definition of a serious incident and in addition, whether the Care Quality Commission (CQC) Duty of Candour regulations and the NHS screening programmes guidance on duty of candour need to be applied. The NHS standard contract includes duty of candour.

It is the provider organisation’s responsibility to ensure that duty of candour regulations are followed.

3.1 Consent during incidents

The Medical Profession (Responsible Officers) (Amendment) Regulations 2013 is a framework that supports NHS England to access person identifiable information through GP records for incident purposes. In this situation the additional information required is deemed to be ‘relevant’. This differs from the usual pathway where only demographic details are transferred in order to invite a person for diabetic eye screening.

Since the NHS transition in April 2013, the consent and governance criteria used in the management of incidents are set out below.

Confidentiality Advisory Group (CAG)

CAG protects and promotes the interests of patients and the public, while allowing appropriate use of confidential patient information for purposes beyond direct patient care.

NHS Act 2006

As set out in the NHS Act 2006, the NHS Diabetic Eye Screening Programme (NDESP) does not require specific approval for the release of patient demographic data. This is because diabetic eye screening is part of the diabetes pathway, and therefore classed as direct care.

Caldicott report

Section 3.2 of the Caldicott report Information: to share or not to share uses the term ‘direct care’ to include clinical care, social care and public health activity relating to individuals.

3.2 Responsibility

SCL incidents span both primary care and screening services and can occasionally lead to questions about which organisation is responsible for managing and investigating the incident. The screening safety incident guidance should be followed in these circumstances.

The RASCI method (responsible, accountable, supporting, consulted, informed) can be used to agree roles. The commissioner should lead the investigation if there is continued uncertainty about responsibility.

GPs have a ‘duty of management’ to their patients. This includes referring individuals for screening when they are diagnosed with diabetes and using the correct patient code for diabetes type. GP practices are advised to subscribe to use the monthly GP2DRS data extract and refer patients in a timely manner.

CCGs and primary care commissioning teams should support NHS England and NHS Improvement screening and immunisation teams to resolve any issues with non-participating GP practices.