13.9.1 Organizing a diabetes service

The increasing worldwide incidence and prevalence of diabetes is placing substantial pressures on health care systems and economies. As a consequence individuals involved in the care of people with diabetes are looking at services currently being provided and examining ways in which care can be organized in the most cost-effective manner. Whilst the degree to which diabetes care is delivered differs from country to country, similar fundamental questions are being asked by those involved in the delivery of care, including: What are we currently providing? What do we need to provide? What are we able to provide? Although the answers to these questions are quite different not just between countries but often within specific localities within a country, the ultimate aim is the same: to provide the best possible care to as many people with diabetes as possible.

The global diversity of diabetes health care need is enormous and while the solutions will be equally diverse, the approach to the development of a diabetes service will, for many organizations, be similar. The main focus of this chapter is based upon the model or the strategic approach developed in the UK, but many of the individual component parts are present in most health care settings.

The main driver to the organization of a diabetes service is the increasing health care burden of the disease. In many developed countries, diabetes care has been traditionally delivered in hospitals—often from a diabetes centre. However, for many years, it has become apparent that because of the shear size of the problem, not all patients can be seen by a specialist in a hospital. Combined with the preference of most people wanting to be managed close to home, many countries have developed a more ‘community’-based service. In what could be described as a fairly unsophisticated model the transition of care to the community has incorporated the more basic and routine care in the community performed by primary care practitioners and practice nurses and more complex care in hospitals by specialists. However, as numbers of people developing diabetes and diabetes-related complications continues to increase, there has become a greater realisation that a more strategic approach is required to improve the quality of care and ensure the best use of the available resources.

At the other end of the spectrum in many developing countries with large rural communities and where both resources and diabetes expertise are in short supply, the development of diabetes centres, in which health care professionals and equipment can be housed centrally, is a more appropriate and often only way forward. Although a different approach may be required in these countries, the pressure to provide the best possible service within the constraints of available resources still applies.

With over 250 million people with diabetes world-wide and estimates of 3 million by 2010 in the UK (1), and finite health care budgets, careful and appropriate service planning, implementation and subsequent evaluation is vital. To be able to develop or redesign a successful clinical service it is important to understand what the fundamental components of that service need to be and then how they might be implemented. In most European countries and the USA, planned diabetes care is based on a system of insurance with differing splits between contributions to a national and private health care scheme. Within these systems, diabetes medicines approved onto national formularies are reimbursed. In some countries, including those in Europe, for example in France, national insurance covers 100% of chronic disease management, for conditions such as diabetes.

In the USA estimates suggest that 45 million people do not have health insurance and diabetes care in these people is largely delivered at the time of emergency care provision when complications arise. While accepting that insurance coverage remains an important goal, organizations such as the American Diabetes Association are seeking fundamental structural changes in diabetes care in an attempt to incorporate care at an earlier stage in the disease process with a focus on education and prevention of complications. This follows on from detailed reviews and evaluations of the ‘chronic care model’ (2) incorporating a number of key components including self-management, decision support, delivery system design, clinical information systems, health care organization and community resources, which individually and collectively have the potential to improve the quality of diabetes care and reduce health care costs (3). Whilst organizations such as Kaiser Permanente have demonstrated the benefits of intensive diabetes management, incorporating planned diabetes visits, telephone contacts and group educational sessions with respect to reducing hospital admissions, outpatient clinic attendances and health care costs (4, 5), there are challenges likely to hinder a more general adoption of such approaches. These include patients reverting to their preintervention status if removed from the support programme and financial consequences to hospitals providing emergency care.

Until recently a very limited infrastructure for diabetes care existed in China, with very low rates of diabetes awareness and, therefore, low rates of diagnosis. Major disparities in care existed between rural and urban communities. In recent years, collaboration between the World Diabetes Foundation and the Chinese Ministry of Health has led to the National Diabetes Management Project (6) incorporating increased education for health care workers and the establishment of new facilities in hospitals and the community supported by the state but with an emphasis on diabetes self-care systems. The importance of placing people at the centre of diabetes care is reinforced in the new strategic plan for 2007–2010 developed by the Australian government (7).

Regions such as sub-Saharan Africa face completely different challenges. Diabetes care in many parts of some of these countries is almost nonexistent. Where efforts are being made, diabetes is competing for resources with the ever dominant communicable diseases. Limited financial resources and infrastructure exist and many people with both type 1 and type 2 diabetes have extremely short life expectancies (8). Again in recent years organizations such as the International Diabetes Foundation—Africa Region and many outside charities have supported developments in primary, secondary and tertiary care settings. Major organizational efforts have focused around the supply of basic medicines such as insulin and provision, for example, of basic diabetes eye and foot services, to try to reduce high rates of blindness and lower limb amputations.

In contrast to developing countries, those countries at the more advanced stages of diabetes service provision are developing more detailed national strategies. However, even across the 25 European countries, there are major inequalities in the delivery of diabetes care (9). In response to the global inequalities in diabetes care provision, the United Nations passed Resolution 61/225 calling for national policies for the prevention, care and treatment of diabetes (10). Where a national (diabetes) plan has been developed, e.g. in the USA (11) and Australia (7), this can serve as an important template defining all the elements of care that should be available to everyone with diabetes. In some, such as the UK, the implementation plan can be subdivided into both national or ‘generic’ and local components. Although such templates inform on what should be provided, and may even incorporate national and international management protocols and indicators of success, they do not necessarily inform on how, by whom or where care should be provided. In the UK, the template defining components of care is the National Service Framework (NSF) (12).

To provide guidance on the implementation of the NSF at a local level in the UK, a group of health care professionals and service users, as part of the National Diabetes Support Team (NDST) have developed ‘The levels of care’ approach which can be used in many different clinical areas, not just diabetes and which should help with the service design process (13). Level 1 provides the generic components of a service, i.e. ‘the must-haves’ or the chapter headings in the NSF and are represented in the Diabetes NSF tadpole diagram (Fig. 13.9.1.1). Level 2 addresses the components detailed in level 1 but goes on to outline the core principles of each component and also the quality standards that should be achieved including those detailed in the National Institute for Health and Clinical Excellence (NICE) guidance (14). Whilst levels 1 and 2 can be considered as national or generic, levels 3 and 4 describe the activity at a local level. Level 3 refers to the design or redesign of the local service and involves how to organize local services to deliver the standards set out in level 2 and can be referred to as the local model of care. Finally, level 4 focuses on the logistics of the level 3 components i.e. the development of local protocols and guidelines, referred to as patient ‘care pathways’. As diabetes is a progressive disease, levels 3 and 4 should be designed to make sure that the patient is always seen by the most appropriate health care professional with the appropriate level of training and skills including, when necessary, access to secondary and tertiary care specialists.

As the need for a more sophisticated model of care grows so to do the different groups of people involved in the organization of diabetes care. To ensure a high quality service for patients which is also the best value for money, the concept of commissioning is now being developed in the UK. Commissioners, or those people charged with securing best value for patients and taxpayers, should, working with patients, health care professionals and partner organizations such as pharmacists and diabetes charities, determine how the health and health care budget is used, taking into consideration the specific needs of the local population. Whilst health care systems in other countries may not appear to have designated commissioners, there are individuals who are functioning in this role, often within government. Clearly for the process to be effective, commissioning should be one of collaboration between all the interested parties including local government. Using many of the international examples provided earlier, most diabetes services are however driven by the providers whether they be part of a national health service or private independent health care organizations. Within the UK a series of Department of Health documents have detailed that the National Health Service (NHS) should move from a provider driven service to one driven by commissioning (15–17) and highlighted the importance of effective and high quality commissioning in achieving a diabetes service that meets the need of the local population, whilst also providing value for money. As a minimum requirement this process should include an assessment of local need, the design of a local specification to meet that need, the procurement of services to deliver the local specification and finally proactive monitoring (Fig. 13.9.1.2). Although other countries may not be developing their diabetes services in the same way there are aspects to this model of service organization that will be familiar across the globe.

Diabetes commissioning is a relatively novel and certainly complex process. Those involved in it require help and advice. In the UK a group of key representatives involved with care in the community, including people from the Department of Health, the main diabetes charity, Diabetes UK, the Association of British Clinical Diabetologists (ABCD) and the NDST developed a ‘toolkit’ that could be used by those responsible for commissioning (18). The toolkit is also useful for providers of diabetes services by highlighting quality markers and to encourage audit of the service. Whilst those tasked with providing a high quality cost-effective service may chose to use all, some or indeed none of the components of the toolkit, it does provide clear advice and suggestions on how to organize a diabetes service. One of the main aims of the diabetes commissioning toolkit is to provide a level 2 description of comprehensive diabetes care to enable commissioners to develop level 3 models of care that are locally appropriate.

Whilst there are major global differences in current levels of diabetes care, many of the key components to developing a diabetes service are common. At the most detailed level, the key features can be broken down into: a review of existing diabetes services, a vision for the future diabetes service, options for the new service, presentation of options to the redesign/implementation group, implementation and finally evaluation of the new service.

The first step in the process of organizing a diabetes service is an assessment of current and future needs of the local diabetes population. Determining the magnitude and burden of the local diabetes problem, or population profiling, needs to take into account many factors. These include the prevalence of diagnosed diabetes, how this equates to international, national and expected local prevalence rates and some estimate of undiagnosed diabetes. As obesity is the major risk factor for the development of type 2 diabetes it is also important to know the obesity prevalence, by age, in the local population and the projected trends. In addition to gaining an understanding of local prevalence data it is also important to have a breakdown of the population, including factors listed in Box 13.9.1.1, for more accurate planning of services. Other factors include: an understanding of health inequalities in the locality including, e.g. areas and levels of deprivation; an understanding of the local health burden in terms of hospitalization, emergency admissions, complication rates, and death.

An accurate estimate of the effectiveness and the cost-effectiveness of the existing local diabetes services is crucial. This should include an assessment of the workforce and how much of the care is provided in different settings such as primary care, intermediate care and secondary care. In recent years there has been a shift in care from the hospital to the community. In many instances, the success of the process has been measured by examining the numbers of patients managed exclusively in primary care by the family doctor. However, less frequently measured are the numbers of patients subsequently referred back for acute diabetes-related hospital admissions or to hospital outpatient complications clinics. This is important when assessing quality and effectiveness of diabetes care. Finally, as part of the process of identifying local health priorities in diabetes care, it is also important to make an estimate of how service provision compares with similar areas and how much known effective measures are being used locally.

The sources of the data for this assessment are numerous and might include local and national audit data and local and national health surveys. In the UK, Quality Outcome Framework (QOF) data, general practice registers, Public Health databases and previous reports including, e.g. National Survey of People with Diabetes (NSPD) (19) and the Healthcare Commission Improvement Review (20) are all helpful resources. Patient views are also important and can be obtained from patient satisfaction surveys, Diabetes UK data, hospital ‘did not attend’ (DNA) rates, and local focus and reference groups.

Clinical information systems, a key component of the chronic care model mentioned earlier in this chapter, underpin the organization of a diabetes service. Not only should they be able to act as an accessible repository of information on existing services, but information technology systems should assist with individualised patient care crossing the barriers of primary and secondary care systems that traditionally have been unable to communicate with each other (see Chapter 13.9.2).

There is no ideal service that will satisfy our diverse local needs. What works well even in some parts of the UK may not work in a neighbouring locality. Equally, the process by which the vision is formulated will differ between localities. The most important factor is that all people involved in diabetes care are consulted and given the opportunity to express their views. Crucially this must also include people with diabetes. Small meetings with nominal patient representation will be inadequate and more open patient meetings and workshops are needed. They may be organized by local patient groups or charities, such as Diabetes UK. The potential key stakeholders, who should be invited to attend visioning meetings or workshops, are listed in Box 13.9.1.2.

The key stakeholder group will need to decide on one or more options for further consideration. In deciding upon which options to pursue further the group will have taken into account the existing diabetes service infrastructure and local health needs, the costs of the existing service, examples of other successful services with similar local health needs and finally the costs of the alternative options. The traditional role of the diabetes centre on the hospital site has come under threat as community based patient-centred care evolves. However, many patients and indeed many community care workers appreciate the importance of a diabetes centre. People with diabetes and their families regard it as a central resource that can accommodate an un-planned drop-in for the provision of help and advice. Community care workers still see it as a place for referral of more complex management problems. Whilst the diabetes centre is likely to be a feature of future service provision, new centres are more likely to emerge in the community rather than on hospital sites. Although there has been a move to delivering the majority of diabetes care in the community in many countries, it must be remembered that the patient must come first and that the care we provide to people with diabetes should be provided by the most appropriate health care worker with the most appropriate level of expertise in the most appropriate setting.

Once the visioning process has been completed, the preferred option/s can be presented to those responsible for health care delivery. In the UK these are currently the commissioners. In some instances the option/s may be presented to commissioners who have established a local redesign group with representation of local specialists to help with the final decision making process. Ultimately however, it will be the commissioners who, taking into account the information presented to them will decide upon the most appropriate service, one that offers best value for money for local people and one that fits in with the overall commissioning plan for health and social care in the locality.

In most cases implementation of a new service will be staged, occurring as a series of developments adding to components of the service that are considered to be working well and be part of a longer term plan. To minimise change for the sake of change and ensure that new developments are leading to a higher quality and more cost-effective service, evaluation is important. This may be part of both local and national audits although in some instances evaluation of a new service may be supported, indeed encouraged, by national research initiatives.

Prioritization of resources will be required and determined by local need. Different localities within the UK, whether determined by their rural/inner-city location, ethnic or socioeconomic status, or some of the other features listed in Box 13.9.1.1, will prioritise on different aspects of care. Clearly, those responsible for the planning of care in other countries will also have their own needs and priorities. In some, as discussed, it may be dealing with blindness and amputations. The key features of a generic specification of care are listed in Box 13.9.1.3.

Whilst people involved in the care of diabetes will be familiar with all the features listed in Box 13.9.1.3, a number of points are worthy of further comment. The development of a service that endeavours to identify diabetes-at-risk people may extend beyond a health and social care plan, for example, into education and target children in schools and local community centres. However, the identification and management of high risk conditions such as obesity and gestational diabetes should also be considered as part of the diabetes service. The identification and diagnosis of type 2 diabetes is important in most populations because of estimates of large numbers of people with undiagnosed diabetes many of whom present too late with complications. This is particularly important in mixed inner-city groups. Community-based screening tests and diagnostic criteria are likely to evolve and be based upon targeting high risk individuals based on non-invasive screening questionnaires. Increasing evidence points to the value not only of good ongoing care but also the early intensive management of diabetes-related complication risk factors, including the use of regular structured education. As we increasingly see a shift in care to the community it is vital that consideration is given to supporting secondary care resources to provide excellence in the services for complications and inpatient hospital care. The major cost of diabetes in all health care economies results from the management and consequences of diabetes-related complications. The process by which patients managed predominantly in the community gain access to hospital based care must be seamless. Unfortunately, pregnancy complicated by co-existent diabetes and gestational diabetes continues to be associated with poorer outcomes for both the mother and the baby. Preconception and good antenatal services should be in keeping with current evidence, reports and guidelines including Australian Carbohydrate Intolerance Study (ACHIOS) (21), CEMACH (22) and those covered by the National Institute for Health and Clinical Excellence (14). For children and young people it is important that the local model of care includes appropriate specialist management and in the UK meets the needs of the Children and Young People’s Diabetes Working Group report (23). All diabetes service planning should consider people with special (mental health and learning disabilities) and complex needs. Finally, the elderly, people with multiple physical disabilities and people in need of end of life care (regardless of age or condition) should be able to benefit from access to appropriate specialist services.

Guidance on best practice quality markers, evidence for improvement for each aspect of the service and suggested key outcomes for each aspect of the service is important. In the UK these are suggested within the Diabetes Commissioning Toolkit under section 2: generic specification for diabetes care—best practice model (18).

As diabetes becomes a worldwide epidemic and one of the largest contributors to expenditure in almost all health care economies it is important that patient-centred, high quality diabetes care services are developed within the limitations of available resources. People involved in the provision of diabetes services must assess local need and organize a service that strives to meet that need. Although this chapter has focused on the evolving strategy of service provision in the UK many of the component parts will be of value in other countries around the world.