Diabetes - FAQs on diabetic eye screening

Will I be offered diabetic eye screening if I live outside England?

What evidence is there to support diabetic eye screening?

What if I don’t want to be screened for diabetic eye disease?

What sort of information about me is held by the NHS Diabetic Eye Screening Programme?

Who will see information about me if I have diabetic eye screening?

Is screening for diabetic retinopathy available privately?

Where can health professionals find out more about the Diabetic Eye Screening Programme?

Could I find out about other health problems as a result of diabetic eye screening?

Why is screening not offered to children under 12?

Will I be offered diabetic eye screening if I live outside England?

Diabetic screening programmes have been set up in Northern Ireland, Scotland and Wales. Details are available below:

What evidence is there to support screening?

The UK National Screening Committee (UKNSC) advises ministers and the NHS in all four UK countries on all aspects of screening policy. Its decisions are based on research evidence and informed by multidisciplinary groups including healthcare professionals and patient representatives.

There are six main reasons why the UKNSC recommended a screening programme for sight-threatening diabetic retinopathy:

Diabetic retinopathy is an important public health problem. It is among the most common causes of blindness in people of working age in England and Wales.
The global epidemic of diabetes, especially type 2 diabetes, means that diabetic retinopathy will continue to be a public health problem.
Diabetic retinopathy can be diagnosed at an early stage in people with both type 1 and type 2 diabetes.
Laser treatment is an effective treatment for diabetic retinopathy, while there is also evidence that diabetic retinopathy can be prevented or the rate of deterioration slowed through better blood glucose and blood pressure control.
There is a suitable and reliable screening test available.
Screening and treatment are a cost-effective use of resources.

What if I don’t want to be screened?

People with diabetes can opt out of the screening programme if they choose.

They should confirm this decision in writing to the screening service that has invited them for diabetic eye screening.

What sort of information about me is held by the NHS Diabetic Eye Screening Programme?

The programme receives information about you from your GP practice in order to invite you for screening. This includes your name, date of birth, ethnicity, contact details, NHS number, details of your GP and the fact that you have been diagnosed as having type 1 or type 2 diabetes. If you ask your GP practice not to provide this information to the screening programme, you will not be invited to screening.

During or after your screening appointment, the programme may ask for additional clinical information relating to your diabetes. The programme will only record this type of information if you give your permission. If you do not agree to provide additional clinical information this will not prevent you from being screened in future.

Who will see information about me if I have diabetic eye screening?

Your information will be seen by:

Those involved in the administration of the programme.
Those who carry out the screening process (including putting in the eyedrops, checking vision, taking your history, taking photographs of your eyes and grading the photographs). These are either staff employed by an NHS body or optometrists, self-employed ophthalmologists or staff employed by independent companies. The programme will provide you with a list of non-NHS personnel and companies if you are concerned in any way about who will see information about you. You should let the programme staff know if you have any particular concerns about any particular individual or company.

If your case is referred to the hospital for further assessment the information about you will be forwarded to the hospital so that those who will be looking after your case can have as much information about your history as possible.

To make sure that the programme operates effectively, from time to time its work is assessed by clinical auditors and others involved in quality assurance. They may need to have access to your data. In addition, efforts will be made nationally to carry out research using fully anonymised data to try to identify as precisely as possible how best diabetes should be managed in the long term. Some examples may be how many people have diabetic retinopathy in any area or how quickly it progresses in different groups of people. Any efforts to use any identifiable information would result in the programme working with the Patient Information Advisory Group to make sure that all necessary agreements are obtained.

Occasionally problems may occur in the software used to support the programme. Normally the software supplier will not need to see any information that identifies a specific individual, but occasionally it may become necessary to supply basic information to ensure that the correct information is maintained by the programme securely. Software suppliers who work with the NHS are bound by requirements of confidentiality and should be supervised by NHS staff if they need to look at information that is linked to a named individual.

Your results and screening information will be sent to your GP.

Is screening for diabetic retinopathy available privately?

Eye checks for diabetic retinopathy are available privately but they won’t necessarily be quality-assured in the same way as the NHS Diabetic Eye Screening Programme. If you have diabetes and are over 12, you are entitled to a free annual screening test provided through the NHS Diabetic Eye Screening Programme. If you qualify for NHS diabetic eye screening and haven’t received your annual invitation, talk to your GP or contact your local diabetic eye screening service.

If you are considering private screening, check that the company is properly regulated and ask for clear written information about the benefits as well as the risks of any tests offered. Find further information in the UK National Screening Committee’s guide to private screening.

Where can health professionals find out more about the Diabetic Eye Screening Programme?

Information for health professionals can be found on the NHS Diabetic Eye Screening Programme website.

Could I find out about other health problems as a result of diabetic eye screening?

The screening programme is specifically for diabetic retinopathy and has good detection levels for this condition. It is possible to identify some other conditions on digital photographs, but that is not the purpose of the screening programme so it cannot be relied upon for other conditions. This is why people with diabetes should see their optician every two years for a regular sight test in addition to their annual diabetic eye screening appointments.

Why is screening not offered to children under 12?

The current guidance is to start screening at 12 because diabetic retinopathy is extremely unusual in children with diabetes who are under the age of 12.

Find general information on diabetic eye screening.