Diabetes is the leading cause of blindness in people of working age in the UK* . This is due to a condition called retinopathy. Retinopathy is a complication of diabetes that affects the blood vessels of the retina. Diabetes causes the capillaries - tiny blood vessels - in the retina to become blocked, resulting in inhibited sight. Research shows that if retinopathy is identified early, through retinal screening, and treated appropriately, blindness can be prevented in 90 per cent of those at risk**. A report entitled ‘The Cost of Blindness’*** calculated that lifetime costs of dealing with retinopathy can be up to £237,000 per person. If 1,000 cases of diabetic retinopathy could be avoided, the potential savings to the government could be as high as £237 million.
A recent study reported that 41 per cent of people with diabetes surveyed in the UK had not been offered screening or had not been screened using a digital camera^. As part of its ‘Action today, health tomorrow’ campaign, Diabetes UK is calling for
- All commissioning bodies to take action and prioritise screening for retinopathy, where programmes are not being centrally funded
- All retinopathy screening programmes to meet agreed national standards and requirements, whether centrally or locally organised and
- For centrally organised and independent quality assurance of locally run programmes to be established akin to cancer screening
UK Standards for retinopathy screening programmes
The National Screening Committee (NSC**) , NICE^^ , SIGN^^^ and CREST* have produced guidance and standards on how to screen effectively, preferably by digital photography, using approved cameras and capture software. Slit-lamp indirect ophthalmoscopy is still an acceptable method of screening until Dec 2006, and will continue to be the method of choice for patients who are unsuitable for digital photography. Direct ophthalmoscopy is not acceptable because it cannot be shown to achieve the necessary sensitivity and specificity. The main reasons why digital photography is the preferred technique is that:
- It facilitates audit and it is possible to retain the evidence of progression of disease
- It enables the grader to take time and to magnify and manipulate images to identify the whole spectrum of disease and
- It is amenable to quality assurance and second opinions
- Early studies indicate that overall disease detection is better using digital photography and trained staff
- It frees up ophthalmologists to deal only with problematic cases reducing the load on eye clinics
The National Screening Committee produces a screening workbook designed to inform and assist relevant health bodies to implement diabetic retinopathy screening programmes according to national standards. Please see National Screening Committee's website).
In Scotland a Copy of the Diabetic Retinopathy Screening Standards can be found on www.nhshealthquality.org. However, there is still wide variation in retinopathy screening programmes across the country and a huge duplication of efforts. To help the sharing of models of good practice and service delivery, Diabetes UK has a good practice section on our website.***
Current targets and progress to date
England:
The Government has made a commitment on retinal screening in the Diabetes National Service Framework which promises that:
‘by 2006, a minimum of 80 per cent of people with diabetes to be offered screening for the early detection of diabetic retinopathy as part of a systematic programme that meets national standards, rising to 100 per cent coverage of those at risk of retinopathy by the end of 2007.’
Funding has already been set aside to enable PCTs to meet the NSF target on retinal screening. A total of £27m has been allocated specifically for capital purchases including the purchase of digital cameras and related software, made available over 3 years (£5m in 2003/4; £9.6m in 2004/05 and £12.4m to 2005/06). However, NHS figures from 2004/2005 indicate that just 61 per cent of people with diabetes in England are receiving screening for retinopathy. Diabetes UK is concerned that PCTs do not have the approved software in place to provide systematic retinal screening to quality assurance standards and that a lack of ongoing funding will make it hard for programmes to stay out of deficit.
Northern Ireland:
The Chief Medical Officer has established a formal project management structure to oversee the implementation of a comprehensive quality assured programme to screen for diabetic retinopathy in Northern Ireland, based on the current screening model in the province. The recently appointed regional coordinator will act as Project Manager. The aim is to offer screening to all eligible people with diabetes over the age of 12 years. The target date for full implementation is March 2007 with committed funding.
Scotland:
All people with diabetes aged 12 years and over in Scotland will be offered diabetic retinopathy screening using digital photography within an organised NHS Board programme that meets the recommendations of the NHS Quality Improvement Scotland report and the report produced by the Digital Retinopathy Special Interest Group (DRSIG). A comprehensive programme will be fully operational throughout Scotland by March 2006. In order to implement appropriate quality assurance, NHS boards will need to implement a digital camera scheme by March 2006. To ensure consistency, local provision of retinal screening must follow the nationally agreed rule set. The rule set will be contained in the retinal screening manual, published late 2005. Diabetes UK is currently awaiting the publishing of reports in Scotland to give figures on the number of people with diabetes who have been screened for retinopathy.
Wales:
The Diabetic Retinopathy Screening Service for Wales (DRSSW) is a Welsh Assembly funded all-Wales initiative set up in 2003 as part of a programme of eye care initiatives in Wales. The DRSSW aims to offer digital retinopathy screening to 80 per cent of people with diabetes aged over 12 years and registered with a GP in Wales by the end of 2005, and to offer screening to all such people by the end of 2006. Screening is currently being rolled out on a county-by-county basis, and the service is set to meet its targets.
Checklist for retinal screening programmes
1. Meet all relevant quality assurance standards
The programme needs to meet a minimum required size. It needs to be big enough to produce robust statistical data so that trends within the programme can be identified, to make sure that graders do not grade in isolation to avoid mistakes, that graders grade sufficient images to remain competent and that the system is assessed independently and externally to make sure that standards are met and sustained. (Please see Diabetes UK, IDDT and RNIB statement for more details).
2. Central management of call/recall lists and administration
The cornerstone for a secure programme is a frequently updated, full and accurate database of all patients, meeting national confidentiality requirements. The administration must be managed centrally to avoid mistakes experienced in other screening programmes as a result of fragmented call/recall. Centrally managed systems will facilitate the effective monitoring of progress, including, who has been offered screening, who has accepted, who has graded the image sets, the result, whether referral was necessary and the outcome of the referral.
3. Trained, accredited and competent staff
Staff taking photographs and grading the images must have appropriate specialist training and be competent in providing the information, education and emotional support for people with diabetes where necessary. Staff must use the national standards for disease identification, grading and quality assurance. Training programmes must be readily available and properly funded to ensure quality.
4. Implementation and effective use of appropriate software
Specialised software designed for retinopathy screening enables programmes to run more efficiently and to collect accurate data; essential for tracking their own performance against objective national standards and comparing their performance against other programmes. It reduces the risk of mistakes. If programmes have to obtain data from a number of different software sources then the manual collation of results is likely to be time-consuming and less accurate.
5. Screening method
Retinal screening should be done by digital camera, except when a person does not meet the criteria (cataracts and those whose eyes don’t dilate effectively). All areas (centrally or locally organised) must have enough digital cameras to meet the needs of the local diabetes community.
6. Secure and efficient links to eye departments
Patients progress must be tracked at all time to ensure that they don’t fall through the net. The central call/recall centre must have good links with eye departments to make sure they fully close the loop to ensure patients are seen, treated and referred back into the screening stream efficiently.
7. Identified a) clinical lead and b) programme administrator/manager
Clear lines of accountability and responsibility should be identified so that all key responsibilities are clearly located with the appropriate person who should have the necessary authority to act.
All people with diabetes need to have their eyes checked at least once a year, the test should use a digital camera and meet the nationally recommended standards set by the National Screening Committee or relevant national body. Without these standards in place, more people with diabetes will undoubtedly go blind. Everything possible must be done to protect the sight of those at risk. It is also important to remember that the organization of programmes must ensure that they meet the needs of people with diabetes living in different areas, particularly taking account of rural and urban differences. The UK Government and devolved administrations should conduct comprehensive and reliable audits of retinopathy screening services across the UK, to identify how and where the money is being spent, and whether relevant health bodies are on course to achieve the targets meeting national standards. Diabetes UK will be monitoring the progress of implementation over the next year.
References
* Kohner et al (1996) Report of the Visual Handicap Group, Diabetic Medicine, 13, (Suppl. 4.) S13-S26
** Department of Health & British Diabetic Association (1995) St Vincent Joint Task Force for Diabetes (Visual Impairment Subgroup)
***An Analysis of the Costs of Visual Impairment and Blindness in the United Kingdom Issued by The Guide Dogs for the Blind Association (http://www.healthyeyes.org.uk/index.php?id=25&type=33)
^Diabetes and Blindness: A focus on action, Diabetes UK, June 2005
**http://www.nscretinopathy.org.uk/pages/nsc.asp?ModT=A&Sec=16
^^http://www.nice.org.uk/page.aspx?o=27915
^^^ http://www.sign.ac.uk/guidelines/fulltext/55/section6.html
*http://www.crestni.org.uk/publications/diabetes.html
***http://www.diabetes.org.uk/good_practice/retinal/index.html
Patients with diabetes receiving screening for diabetic retinopathy, Department of Health, 2004/05
August 2005