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Diabetic Retinopathy Screening Services in Scotland: Recommendations for Implementation

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DIABETIC RETINOPATHY SCREENING SERVICES IN SCOTLAND: RECOMMENDATIONS FOR IMPLEMENTATION

Diabetic Retinopathy Screening: Executive Summary

Introduction

Key statement 1. The Health Technology Assessment report by HTBS sets out the model of eye screening for diabetic retinopathy to be implemented in Scotland. This report by the Diabetic Retinopathy Screening Implementation Group (DRSIG) endorses the recommendations of HTBS whilst extending and developing some of the report's themes, particularly the practical issues of implementation.

Key statement 2. NHS Boards are responsible for ensuring that all appropriate people with diabetes in their area are offered diabetic retinopathy screening (DRS). The responsibilities of the National Services Division (NSD), NHS Quality Improvement Scotland and the Scottish Executive to support and monitor DRS are outlined in this report.

Key statement 3. All patients with diabetes aged 12 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 HTBS report and this report produced by the DRSIG. A comprehensive programme will be fully operational throughout Scotland by March 2006.

Key statement 4. In order to implement appropriate quality assurance, NHS boards which have established schemes based on slit lamp examination will need to implement a digital camera scheme by March 2006.

Overview of the Screening Process

Key statement 5. To ensure consistency, local provision of DRS must follow the nationally agreed rule set. The rule set will be published in the DRS Manual. No individual Board will be permitted to define its own rules.

Patients and the Public

Key statement 6. NHS Boards must clearly articulate what the screening programme is designed to achieve and the public must be made aware of its limitations.

Key statement 7. Diabetic retinopathy screening will not remove the need for regular general eye examination by optometrists to monitor changes in refraction and to detect other eye disease.

Key statement 8. Patient perceptions and the promotion of confidence together with patient information, involvement and empowerment, equity of access and emotional and practical support will be key to the successful implementation of DRS. To ensure these important issues are incorporated in the programme, service uptake and patient satisfaction will be measured. A patient information leaflet to be used nationally will be provided in the DRS Manual for NHS Boards.

Key statement 9. NHS Boards should ensure that information about low vision and rehabilitation services is readily available.

Key statement 10. Patients should be represented on the executive group of the DRS collaborative network; ( see key statement 39). In addition, a sub group should be set up to monitor the views of patients and ensure that the DRS programme meets their needs.

Key statement 11. The diabetic retinopathy screening programme is a form of direct patient care. Informed but implied consent to screening is therefore applicable.

Local Developments

Key statement 12. All NHS Boards in Scotland are taking steps to develop diabetic retinopathy screening programmes but none is so far advanced that the proposals in this report will inhibit local development and implementation.

Staffing

Key statement 13. Conventional professional boundaries should not be allowed to constrain staffing structures for the screening programme. For example, retinal screeners and graders may be nurses, optometrists, orthoptists, medical photographers or others who may not have experience in healthcare but who receive appropriate training, accreditation and monitoring.

Key statement 14. There is an urgent requirement to include retinal photographers in the patient group direction on the use of eye drops for mydriasis.

Training

Key statement 15. Training and accreditation in diabetic retinopathy screening must be carried out to the appropriate quality standard. NHS Education should be responsible for the accreditation of training. NSD should be responsible for commissioning an appropriate, locally delivered training scheme.

Key statement 16. A training handbook for screeners and graders will be published by June 2003.

Grading

Key statement 17. The Scottish Diabetic Retinopathy Grading Scheme 2003 should be assessed for effectiveness and efficiency and reconsidered as appropriate in the light of new developments in the UK and abroad.

Key statement 18. The Scottish Diabetic Retinopathy Grading Scheme 2003 can be used manually and NHS boards are encouraged to adopt it as soon as possible. However, until a national grading software programme has been procured, use of the Scottish Diabetic Retinopathy Grading Scheme 2003 should be at the discretion of each individual Board.

Cameras and Image Transmission

Key statement 19. Digital technology for cameras and image transmission has provided the opportunity for a national screening programme to be introduced at a reasonable cost. It provides permanent and accessible clinical photographs for quality monitoring and review.

Key statement 20. Digital technology will continue to advance but the specification required to support diabetic retinopathy screening may now be defined. To this end, the DRSIG will continue to contribute to UK wide discussions to agree the appropriate specification in conjunction with camera manufacturers.

Key statement 21. Because technical developments have occurred so rapidly there is limited evidence to help formulate the minimum camera specification or to assess the utility of different options for image compression. Research is required to determine the optimum pixel resolution required for adequate screening. These issues should be kept under review by the DRS collaborative network ( see key statement 39).

Software to Support Diabetic Retinopathy Screening

Key statement 22. A fully comprehensive software solution is required for the effective and efficient provision of diabetic retinopathy screening. Such a system must integrate or interface the functions of image acquisition, call/recall, grading and quality assurance. On behalf of NHS Boards and Trusts, NSD should commission work to define the full specification of the system and bring it into operation.

Key statement 23. Until the software to support DRS is developed, piloted and implemented, NHS Boards should offer DRS to patients using standard clinic appointment systems.

Key statement 24. Diabetic retinopathy screening is an integral part of diabetes care and must be fully linked to the local clinical management system. The demographic data to populate the DRS system will be supplied by the local clinical management system. The results of the screening process (including a compressed image) must be fed back into the local clinical management system. DRS software will be compatible with SCI-DC.

Key statement 25. To avoid the risk of missing some patients, it is essential to adhere to the guiding principles of a standardised approach with integral failsafe arrangements and effective monitoring and evaluation. NSD will specify the standards and principles.

Key statement 26. Fully comprehensive software to support diabetic retinopathy screening should be procured centrally rather than by each NHS Board independently. The commissioning process will determine how this will be provided in practice - what will be purchased centrally and what will be the responsibility of NHS Boards.

Key statement 27. In order to ensure consistent standards of service delivery and quality assurance, all NHS boards must either use the nationally developed software, or satisfy NSD that an alternative system can deliver fully comparable results.

Key statement 28. The full specification of the software and proposals to deliver it will be produced by NSD by July 2003.

Key statement 29. A fully comprehensive software solution to support diabetic retinopathy screening will be made available by September 2004 and fully implemented by no later than September 2005.

Quality Assurance and Standard Setting

Key statement 30. The NHS Quality Improvement Scotland Working Group on Diabetic Retinopathy Screening should produce standards for DRS. These standards will cover the following topics: responsibilities, service specification, communication, patient information, call/recall and failsafe, the screening process, quality assurance, referral and treatment. Draft standards should be published by May 2003.

Key statement 31. Quality assurance requires that for each grader randomly sampled images are checked by a level 3 grader. Initial estimates suggest that a minimum of 200 images per grader per annum will be required. This will be finalised in the NHS Quality Improvement Scotland Standard.

Key statement 32. NSD should be responsible for commissioning a national proficiency testing scheme.

Impact on Ophthalmology Services

Key statement 33. The net effect on ophthalmology services of the introduction of a national diabetic retinopathy screening programme is likely to be modest. The impact should, however, be monitored by NHS Boards.

Key statement 34. Protected staff time for quality assurance and level 3 grading must be provided.

Key statement 35. Referrals to ophthalmology from screening should be seen according to clinical priority as determined by the screening photograph. Waiting times should be audited by NHS Boards.

Key statement 36. Technical failures (i.e. ungradeable images) must be contained within the screening programme in order to prevent ophthalmology services from being overwhelmed.

Key statement 37. The screening programme should provide capacity for ophthalmologists to return to screening those patients who, after treatment or otherwise, no longer have referable retinopathy and who may therefore re-enter the screening cycle without continuing to attend an ophthalmologist.

Key statement 38. All ophthalmology services must have access to digital photography. In addition, ophthalmologists will require access to the Diabetes Clinical Management System (SCI-DC) and NHS Network.

National Support and Monitoring

Key statement 39. A DRS collaborative network should be established to support and facilitate the implementation of DRS across Scotland. This network should be directed by an executive group comprising individuals from NHS Boards, various relevant professions involved in the retinal screening programme and patient representatives.

Key statement 40. By June 2003 a lead clinician should be appointed to act as chairman of the executive group. A part time commitment of one half day session per week is suggested for a period of three years.

Key statement 41. A full-time DRS network co-ordinator should be appointed by NSD as soon as possible to initiate and support the network and facilitate exchange of information between screening centres.

Key statement 42. A DRS Manual for NHS Boards should be published and maintained by NSD, on behalf of the DRS collaborative network. The DRS Manual should contain detailed guidance on establishing and managing a DRS programme and include a collation of all relevant standards and policies, standard letters and contact details. A first edition of the DRS Manual should be published by September 2003.

Key statement 43. The main method for assessment of the performance of NHSScotland in the operation of DRS will be the reviews undertaken by NHS Quality Improvement Scotland which will evaluate the published Diabetic Retinopathy Screening Standards. Review visits will commence when DRS services are in operation. In the interim, information about progress towards improving DRS will be published as part of the NHS Quality Improvement Scotland review of the diabetes services, in the annual Scottish Diabetes Survey and in the Diabetes Annual Reports published by NHS Boards.

Key statement 44. ISD should be involved in defining the national dataset to be used by the DRS programme. A subset of the dataset should be identified as key performance indicators to be included as a routine SMR return.

Key statement 45. People with diabetes are strongly encouraged to attend for screening, but attendance cannot be compulsory. Although NHS Boards are required to offer screening to all appropriate patients, they cannot be held responsible for those who choose not to attend. Research is required to explore why some people do not take up the offer of screening.

Patient Information

Key statement 46. Patients require appropriate and consistent information about the Scottish screening programme for diabetic retinopathy. A single patient information leaflet has been developed and will be published in the DRS Manual and on the website. The manual will also contain example letters to patients and healthcare professionals to ensure consistency of messages to patients throughout the invitation, screening and treatment process.

Key statement 47. Patient information should be accessible to people with impaired vision and should conform with RNIB guidance (2001).

Key statement 48. Patient information leaflets should be available in relevant minority languages. Urdu, Punjabi, Hindi, Chinese and Gaelic texts will be particularly relevant for Scotland. These leaflets should be created centrally and made available for general use via the diabetes website.

Research

Key statement 49. The research topics identified in the HTBS report as well as further research questions which become apparent should be developed so that appropriate modification of the screening programme might be introduced in the light of experience.

Key statement 50. The newly established Diabetes Research Group should explore ways of ensuring that the research requirements of the DRS programme are implemented.

Funding Requirements

Key statement 51. NHS Boards should provide funding to implement a comprehensive DRS programme in their area. Collaboration between areas to achieve optimal use of resources will result in important cost savings. NHS Boards should therefore explore appropriate opportunities to combine, for example, call/recall units for diabetic retinopathy with other NHS Board screening units, or with diabetic screening offices in other boards. NHS Boards should also explore the potential to realise savings from joint provision of screening across board boundaries.

Key statement 52. The Scottish Executive, National Services Division and NHS Quality Improvement Scotland should provide the resources necessary to implement the central components of diabetic retinopathy screening, to include central co-ordination, specification and documentation of standards, central elements of QA (including proficiency testing), a DRS Manual, a training handbook, software procurement and patient information material.

Key statement 53. Procurement of cameras on a UK basis may secure significant economies of scale and is the preferred option, provided that the UK user requirements are similar to the Scottish user requirements and that UK procurement does not unduly increase project or financial risk, or delay the implementation timetable. Although the benefits of UK procurement may not be achievable in the short term, development of close contacts with UK colleagues will make joint working easier in the future.