The crisis in diabetes care in England

In 2001 the National Service Framework for Diabetes set standards for diabetes care in England, with a delivery strategy designed to achieve a world class diabetes service by 2013.1 However, a series of recent reports from various sources show just how far we are from delivering the standards by the 2013 deadline. A “state of the nation” report from Diabetes UK declares that diabetes care is “in a state of crisis,” and a damning National Audit Office (NAO) report accuses the Department of Health of failing to hold NHS commissioners to account for poor performance and of failure to deliver the recommended standards of care.2 3 Both reports are based on the department’s own commissioned audits.

The National Diabetes Audit reported that in 2010-11 only half of people with diabetes received all of the recommended nine care processes, with fewer than one in five achieving the recommended treatment targets.4 An estimated 24 000 diabetes related deaths each year may have been preventable, and death in young women (aged 15-34 years) with type 1 diabetes has increased ninefold since the 2007-08 audit.5 The National Diabetes Inpatient Audit 2011 found that 15% of hospital inpatients have diabetes.6 Errors in management and prescribing, iatrogenic hypoglycaemia, poor glycaemic control, and hospital acquired foot ulceration commonly compromise their care. The Atlas of Variation 2010-11 shows wide variations in outcomes for complications of diabetes.7 England, unlike the United States and many European countries, has failed to reduce amputation rates, and major amputation rates vary sixfold between primary care trusts.

The true cost of diabetes to the NHS in England is unknown. Estimates vary from £1.3bn (€1.65bn; $2bn) (Department of Health) to more than £3.9bn (NAO) each year, whereas a health economics analysis supported by Diabetes UK calculated the annual cost to be £9.8bn in direct costs and £13.8bn in indirect costs.2 3 With documented failure to deliver adequate care and wildly differing estimates of the cost of treating diabetes, we ask what has gone wrong and what needs to be done to deal with this?

What has gone wrong? The prevalence of type 2 diabetes has increased dramatically. With patient numbers rising, the responsibility for providing care for most patients with diabetes has fallen to general practitioners and practice nurses. However, in many areas the infrastructure to deal with the load is inadequate. Not all practices have staff with the skills and knowledge needed to deliver good diabetes care. The national service framework recommends patient empowerment through structured patient education as a standard and essential component of diabetes care, but the NAO found that only £2m (0.0005%) of the money spent on diabetes is allocated to patient education.3 Primary care trusts have been responsible for commissioning education of both healthcare professionals and patients, but investment varies widely. In some areas drug companies have stepped into the breach, which creates the potential for them to influence prescribing patterns and to promote, for example, the use of expensive analogue insulins. Financial incentives, including the quality outcomes framework were introduced to improve diabetes care. However, after an initial positive response, the framework has become a tickbox exercise, which rewards for measuring but not for improving clinical outcomes—for example, examining the feet is rewarded whether or not action is taken, as is achieving a glycated haemoglobin target without recognising that this is accompanied by frequent hypoglycaemia. A staggering 10-fold variation in outcomes across trusts is not accounted for by deprivation and reflects varying commitment of individual trusts to diabetes services.7 The NAO suggests that payment thresholds have been set too low, which removes the incentive to achieve targets in all care processes. It recommends revision of the system of payment to link the outcomes framework to pathways of care.

Secondary care does no better, with reports of poor inpatient care and large variations in the provision of specialised services.6 The availability of newer technologies, such as insulin pumps and continuous glucose monitoring, varies widely across trusts and lags behind services in many European countries. Posts previously held by consultants in diabetes are being converted to acute physician posts; in a recently published survey, 30% of diabetes specialist registrars had not obtained a consultant appointment in the year after completing their training..8 This failure to value the role of specialists in diabetes threatens patient care and research in the United Kingdom. Diabetes specialist nurses—key educators of healthcare professionals and patients—are under threat because practice nurses, who may not have received the required level of training, are being regarded as adequate replacements. Diabetes specialist nurse posts in hospitals are being cut to “save” money, despite overwhelming evidence that they improve care and are cost effective.9 Although specialist dietitians and podiatrists play an essential role in the specialist diabetes team some hospitals have none.6 The payment by results tariff is a barrier to integration and seamless care; it has created a perverse disincentive to seek specialist assessment and deprives patients of access to a specialist team. Disinvestment in diabetes services stems from the failure of primary and secondary care managers to recognise the important role of the specialist diabetes team, and from a lack of financial incentives to drive up standards in specialist care.

What needs to be done? We need a form of integrated care, which allows patients to move seamlessly between primary, community, and secondary care depending on need, and which enhances interaction, information exchange, and learning across the clinical services. Such integration is essential to the provision of high quality diabetes care. Some areas have informally reported successfully bypassing payment by results to allow those involved in diabetes care to make financial savings while working across traditional boundaries.10 This approach needs to be introduced nationally. Education and support to improve skills in delivering education that empowers patients and in screening for complications should be a priority in primary care. Inpatients with diabetes should be managed by members of staff who are well educated in the care of patients with diabetes, and secondary care should provide high quality specialist clinics such as pregnancy clinics, clinics for adolescents, and multidisciplinary foot clinics. Patients with type 1 diabetes, whose specific needs have been sidelined by the rapid rise in the number of people with type 2 diabetes, should have direct access to a specialist team with specified competencies. IT systems should be designed specifically to facilitate communication across service boundaries and to record and monitor clinical outcomes efficiently. Specialists in diabetes, who should work with primary care through effective and resourced diabetes delivery networks, must be responsible for setting standards and organising care across service boundaries. However, accountability and governance must remain with the commissioners, who need to use information provided by national audits to ensure that standards are delivered.

Although it is too late to achieve the national service framework targets by 2013, action is urgently needed in the NHS to ensure that people with diabetes can access care of the required quality. Evidence provided by recent reports must be used to identify and deal with the problems now; otherwise the economic costs to the NHS and personal costs to the rising numbers of people with diabetes will be catastrophic.