• Diabetes UK’s (DUK) 2016 State of the Nation Report calls for diabetes education to be improved
• Effective education can reduce the vast and escalating burden of diabetes and is significantly cheaper than treatment
• Traditional diabetes education is failing miserably
• DUK’s education only reaches a small percentage of people with diabetes
• Self-management is the only realistic way forward to better diabetes management, but will require a transformation of the current patient-educator relationship
• Could DUK play a leading role in this transformation?

1. The majority of the charity’s education and support services only appear to reach a small percentage of the total number of people either at risk of T2DM or those living with diabetes. We have drawn attention to the fact that a large percentage of people with T2DM are over weight and 40% of obese people reside in deprived areas of the UK. To be effective diabetes education must have the Heineken effect.
2. For the past decade at least, the DUK has tended to report the costs and distribution of its education and support services. More relevant would be for the charity to report costs and the effects its services have had on reducing the burden of diabetes, slowing complications, improving efficiencies, and enhancing patient outcomes.

The importance of measuring the impact of diabetes care

• Bill Gates says that measurement is key to reducing disease
• Type-2 diabetes is the fastest growing health threat of our time, it is preventable, but not properly measured
• Expensive diabetes programs fail to dent the burden of the disease
• Taxpayers have a right to know the annual impact of diabetes care and education on the incidence, outcomes and costs of the disease
• Healthcare agencies must agree and report clear goals that drive progress

Bill Gates is right. Measurement is central to the success of reducing the global incidence of diseases. Can we learn something from Bill Gates to help reverse the epidemic of type-2 diabetes: a preventable disease, which is spiralling out of control, and set to bankrupt healthcare systems?

Dr Syed Sufyan Hussain, Darzi Fellow in Clinical Leadership, Specialist Registrar and Clinical Lecturer in Diabetes, Endocrinology and Metabolism, at Imperial College London, describes the challenge:

      
             (click on the image to play the video) 
 

The UK

Similar to other developed nations, diabetes in the UK is the largest and fastest growing health challenge of our time. Since 1996, the number of people living with diabetes in the UK has more than doubled: 3.9 million people now have diabetes, another 9.6 million are at high risk of getting type-2 diabetes, and every year, that number is rising dramatically. If nothing changes, in 10 years time more than four million people in England will have diabetes. This suggests that current diabetes care programmes and education are failing.

Diabetes is expensive, and current annual treatment costs alone are about £10bn - some 10% of the annual NHS budget - and 80% of this is spent on managing avoidable complications. For example, diabetes is the most common cause of lower limb amputations, and over 6,000 happen each year in England alone. The result is frequently devastating in terms of social functioning and mood, and poses a considerable cost to healthcare providers, while the financial burden on patients and their families can be enormous.

The total annual costs of diabetes, which includes both direct and indirect costs, such as the loss of earnings because of illness, are difficult to measure, but are estimated to be about £24bn per year. If nothing changes, these costs are projected to rise to nearly £40bn in 20 years. This further suggests that current diabetes care programmes and education are failing. 
 

Doing more of the same 

In its 2015 State of the Nation Report, Diabetes UK (DUK), a large and influential charity, urged the UK Government and NHS England to do more in order to ensure that people with diabetes get the support and education they need to manage their condition. However, if the UK government and NHS England do more of the same, nothing will change, and diabetes will continue to escalate, destroying lives and costing billions. Let us go back to Bill Gates.
 

Measures to drive progress

“I’ve been struck again and again by how important measurement is to improving the human condition. You can achieve amazing progress if you set a clear goal and find a measure that will drive progress toward that goal . . . . This may seem pretty basic, but it’s amazing to me how often it is not done,” says Gates.

The UK government, NHS England, Public Health England and DUK do not share an agreed set of indicators, which measure and report on the impact of diabetes care and education. Given that each year billions are spent on diabetes, these agencies should be obliged to report annually on the impact that their diabetes care and education programs have on the prevalence, outcomes and costs of diabetes. Let us return to Bill Gates, and his efforts to reduce the global burden of HIV.
 

Bill Gates 

The 2013 annual report of the Melinda and Bill Gates Foundation stresses that it, “Enhances, the impact of every dollar invested by improving the efficiency and effectiveness of our HIV program, [which] supports efforts to reduce the global incidence of HIV significantly and sustainably, and to help people infected with HIV lead long, healthy, and productive lives. The global incidence of HIV has declined 20% since its peak in the mid-1990s.” 

Now, tweak the above paragraph to create a gold standard annual report of the state of diabetes in the UK. The government, NHS England, Public Health England and DUK, “Enhances the impact of every pound invested in diabetes by improving the efficiency and effectiveness of our diabetes programs and education [sic], which support efforts to reduce the UK’s incidence of diabetes significantly and sustainably, and to help people living with diabetes to lead long, healthy, and productive lives. [Notwithstanding,] since 1996, the UK’s incidence of diabetes has increased by 110%, complications have increased by 115%, and annual treatment costs have increased by at least £2bn.”
 

Changing demographics

In the above paragraph we used indicative numbers to show direction. Some, but not all, of the reported increases can be explained by demographic changes. For example, over the past 20 years, the UK’s population has increased by 5.5 million and aged, and now more than 18% are over 65, and this cohort is rising. According to the Office of National Statistics, 60% of the population increase is due to immigration. David Coleman, a professor of demographics at Oxford University, suggests that this mass influx of migrants has given the UK, Europe’s fastest-rising percentage of ethnic minority and foreign-born populations, and by 2040 foreigners and non-white Britons living here will double and make up one third of the UK population. 

This has important healthcare implications because type-2 diabetes is more than six times more common in people of South Asian descent, and up to three times more common among people of African and African-Caribbean origin. Studies show that people of Black and South Asian ethnicity also develop type-2 diabetes at an earlier age than people from the White population in the UK, generally about 10 years earlier. All these factors have a knock-on affect for healthcare. According to the Institute of Economic Affairs the changing demographics in the UK has created a “debt-time bomb’ that will require the end of universal free healthcare. 
 

Takeaways

Diabetes plays a prominent role in the health of the UK, and not all of its rising burden can be explained by changing demographics. The escalating burden of type-2 diabetes can be reduced and prevented by effective management and education, which engage people living with, or at risk of diabetes, and changes their behavior. Current education programs fail to do this. 

Instead of asking the government and NHS England to, “do more”, is it not time for those responsible for diabetes care to learn from Bill Gate, and, agree and report annually, measures that inform on the impact that diabetes care and education is having on the incidence, outcomes and costs of diabetes? 

Diabetes wars

• Failing diabetes services are waisting money
• Too many people with diabetes develop avoidable complications
• No one is held accountable for poor diabetes service performance
• The NHS payment systems do not effectively incentivise the delivery of recommended standards of diabetes care
• Appropriate incentives for diabetes services could improve diabetes outcomes and save the HNS £170m per year

National Audit Office v. NHS

A war is being waged between the NHS and the UK’s National Audit Office (NAO) over the state of adult diabetes services in the UK. Two NAO reviews found that doctors are failing to meet nationally agreed standards of diabetes care, and that they are neither effectively incentivised to deliver and sustain quality services nor accountable for poor service. 

The NHS says it is committed to supporting doctors to deliver high-quality care to people with and at risk of diabetes, but the NAO is not convinced.  It recommends that monies for diabetes services and doctors’ remuneration should be linked more directly to desired patient outcomes in order to promote and sustain accountability, responsibility, learning and the strengthening of local capacity. 

 

Adult or type 2 diabetes (T2DM) is an avoidable chronic condition, which occurs when the body does not produce enough insulin to function properly, or the body’s cells do not react to insulin. This means that glucose stays in the blood, and is not used as fuel for energy. There are currently 3.9 million people living with diabetes in the UK, with 90% of those affected having T2DM. Diabetes is a cause of serious long-term health problems, which include blindness, kidney failure, lower limb amputation, and cardiovascular disease, such as a stroke. Roni Sharvana Saha, Consultant in Acute Medicine, Diabetes and Endocrinology at St Georges University Hospital, London describes why weight control is important for the management of T2DM.

         
            (click on the image to play the video) 

Local responsibility for adult diabetes services 

In England the responsibility for diabetes services and support rests with local Clinical Commissioning Groups (CCGs) and GPs. In 2003 the UK government gave primary care trusts the responsibility for commissioning local services on behalf of their local populations, and freedom to decide how to best deliver diabetes services. It is for GP practices to ensure that people with diabetes receive all the nine recommended care processes each year in accordance with agreed clinical guidance (see below). In 2004 the Quality and Outcomes Framework (QOF) was introduced as part of the new GP contract, which includes payments for undertaking specified clinical activities and achieving set clinical indicators.

 

The nine basic processes of diabetes care are: (i) blood glucose level measurement (HbA1c), (ii) blood pressure measurement, (iii) cholesterol level measurement, (iv) retinal screening, (v) foot and leg check, (vi) kidney function testing (urine),  (vii) kidney function testing (blood), (viii) weight check, (ix) smoking status check.
 

Failing incentives

QOF awards for GPs initially improved diabetes outcomes in primary care. However, recently there has been little improvement, and according to the NAO the current payment system for GPs is not driving the required patient outcomes. GPs are paid for each individual diabetes test they carry out rather than being rewarded for ensuring that all nine tests are delivered. Similarly, the Payment by Results tariff system for English hospitals does not incentivize the multi-disciplinary care required to treat a complex long-term condition such as diabetes. According to the NAO the NHS needs to review and enhance its payment systems to ensure that they effectively incentivise good care and better outcomes for people with diabetes.
 

National Audit Office’s First Review (2012)

In May 2012 the NAO’s first review of adult diabetes services in England found that the NHS was not delivering value for money, and that it was underestimating its annual spend on diabetes services by some £2.6 billion. “There is poor performance in expected levels of diabetes care, low achievement of treatment standards, and 24,000 people die each year from avoidable causes relating to diabetes”, said the report.

The NAO findings included the following:

    1. "Fewer than one in five people with diabetes in England are being treated to recommended standards, which reduce their risk of diabetes-related complications
    2. Many people with diabetes develop avoidable complications
    3. NHS accountability structures fail to hold commissioners of diabetes service providers to account for poor performance
    4. No one is held accountable for poor performance, despite the fact that performance data exist
    5. The NHS is not effectively incentivising the delivery of all aspects of recommended standards of care through the payments systems
    6. There is a lack of clarity about the most effective way to deliver diabetes services
    7. Payment mechanisms available to GPs are failing to ensure sustained improvements in outcomes for people with diabetes
    8. The NHS does not clearly understand the costs of diabetes
    9. Effective management of diabetes-related complications could save the NHS £170 million a year"

The NAO Recommendation

The NAO recommended that the system of incentives for doctors be renegotiated to improve outcomes for people with diabetes in accordance with agreed clinical practice. GPs should only be paid for diabetes care if they ensure all nine care processes are delivered to people with diabetes. Also the NAO recommended that the thresholds at which GPs are remunerated for achieving treatment standards should be reviewed regularly.
 

Public Accounts Committee Chair: “Depressing report”

Margaret Hodge, chair of The House of Commons Committee on Public Accounts, which took oral and written evidence on the NAO Report, said, “This was one of the most depressing Reports I’ve read. Everybody understands the enormity of the problem; nobody is arguing with the figures; everybody accepts both the nature of the checks, and the treatments to prevent complications that should be done; money or lack of it has not been an issue; there appears to be a structure within the Department of Health with a tsar and a group of people whose job it is—and yet we are failing.”
 

Public Accounts Committee’s Conclusion: Higher costs, poorer services

The conclusions of Public Accounts Committee echoed its chair’s opening remarks, “Although there is consensus about what needs to be done for people with diabetes, progress in delivering the recommended standards of care and in achieving treatment targets has been depressingly poor. There is no strong national leadership, no effective accountability arrangements for commissioners, and no appropriate performance incentives for providers. We have seen no evidence that the Department of Health will ensure that these issues are addressed effectively . . . . Failure by it to do so will lead to higher costs to the NHS as well as less than adequate support for people with diabetes.”
 

Action for Diabetes: the NHS’s Defence (2014)

In January 2014 the NHS defended its services in Action for Diabetes, a report prepared by its Medical Directorate, which sets out the activities NHS England is undertaking as a direct commissioner of GP and other primary care services, and as a support to secondary and community care commissioners to improve outcomes for people with and at risk of diabetes. The report stated that between 1996 and 2002 there was a, “marked reduction in excess mortality in those with diabetes”, and the UK’s diabetes-related mortality rates were better than 19 other developed economies. 

Action for Diabetes reaffirmed that the NHS was committed to supporting CCGs to deliver high-quality care to people with and at risk of diabetes, and will:

      • “Provide tools and resources to support commissioners in driving quality improvement
      • Ensure robust and transparent outcomes information, and align levers and incentives to facilitate delivery of integrated care across provider institutional boundaries
      • Empower patients with information to support their choices about their own health and care, and support the development of IT solutions that allow sharing of information between providers and between providers and people with diabetes
      • Look to the future of the NHS to deliver continued improved outcomes for people with or at risk of diabetes.” 

In a foreword to Action for Diabetes Professor Jonathan Valabhji, the UK government’s National Clinical Director for Obesity and Diabetes, said the NHS needs, “new thinking about how to provide integrated (diabetes) services in the future in order to give individuals the care and support they require in the most efficient and appropriate care settings, across primary, community, secondary, mental health and social care, and in a safe timescale”.
 

National Audit Office’s Second Review (2015) 

In October 2015, the NAO published a follow-up review of NHS adult diabetes services, and criticised (I) the still low rates of the delivery of basic diabetes care processes, and (ii) the low rates of attainment of diabetes treatment goals. The NAO pointed to the escalation of avoidable complications, such as amputation, blindness, kidney failure and stroke that consume about 70% of the annual treatment costs of the NHS on diabetes.  The report commented:  “The improvements in the delivery of key care processes have stalled, . . . and this is likely to be reflected in a halt to outcomes improvement for diabetes patients . . . There are still 22,000 people estimated to be dying each year from diabetes-related causes that could potentially be avoidable”.

Ineffective payment systems

The NAO’s 2015 report criticized the way that the NHS distributes money, and sets local incentives for improving the delivery diabetes services. Economists have long argued that bureaucrats distributing monies with loose conditions is not an effective way to achieve transformative change. According to the NAO, “Current financial incentives, funding mechanisms and organisational structures of health services do not support the delivery of integrated diabetes care”. The NAO recommends that the NHS should, “Ensure that its payment systems effectively incentivise good care and better outcomes for people with diabetes”. 

Comment: Reasons for failure

According to market economists aid is at best wasteful, and at worst creates a damaging culture of dependency. Also, aid is often subject to vested interests, and fails to change people’s behaviors and improve wellbeing.
 
Institutions responsible for delivering diabetes services in England have not learned these lessons, and as a consequence poorly incentivized diabetes service providers fail to propel people living with diabetes towards self-management, and fail to slow the onset of devastating and costly complications. 
 

Effective incentives are key for improving diabetes outcomes

This Commentary has suggested that without appropriate incentives diabetes service providers have become chronically dependent on their paymasters, which has stifled innovation, made service providers less focused on patient outcomes, and less likely to innovate and prioritize the generation of other resources. Current incentives for diabetes service providers should be renegotiated.
 
A previous Commentary suggested that effective patient outcomes occur when people and communities are engaged and assume greater responsibility for their own wellbeing. Tried and tested behavioral techniques successfully used by the Cameron and Obama administrations need to be embedded in a range of diabetes services to create offerings that people want and that actually lower the risk of T2DM, propel those living with the condition into self-management, and slow the onset of devastating and costly complications; see Behavioral Science provides the key to reducing diabetes.
 
A related issue, which needs to be addressed to improve patient outcomes further, is the need to reduce the power of the bureaucracies that control the provision of diabetes services and to increase competition among diabetes service providers. Current bureaucratic diabetes service providers present a significant barrier for new entrants, and thereby discourage investments in innovations and new technologies. This will be the subject of a future Commentary.

DUK and HealthPad agree on the importance of diabetes education

• Diabetes in the UK is spiralling out of control
• People with diabetes are not receiving the care they need
• Education for people living with diabetes must improve
• CCGs need to increase the effectiveness of diabetes education
• Policy makers must be more open-minded about digital health
• Policy makers should prepare the UK for the digital future

DUK and HealthPad

Diabetes UK (DUK) and HealthPad are on the same page in recommending more effective education to reduce the escalating burden of diabetes. DUK insists that, “Clinical commissioning groups (CCGs) need to increase the availability and uptake of a range of diabetes education and learning opportunities”.

Managing My Diabetes

HealthPad has developed a cost effective digital diabetes education service specifically for CCGs to: (i) increase the connectivity between local health professionals and people with diabetes, (ii) enhance patients’ knowledge of the condition, (iii) propel people with the condition towards self management, (iv) slow the onset of complications and (v) reduce face-time with doctors, see: Reducing the burden of diabetes by online video.
 

The state of the nation 

DUK’s 2015 State of the Nation Report laments that the incidence rates of diabetes continues to spiral out of control, and people with diabetes is now at an all time high of 3.9 million, with a further 600,000 estimated to have undiagnosed type-2 diabetes. Further, 2015 National Statistical Office figures, show that 67.1% of adult males and 57.2% of adult females in the UK are either overweight or obese, and therefore at risk of type-2 diabetes. 

There is no way of preventing type-1 diabetes, which occurs as a result of the body being unable to produce insulin, and usually develops in childhood, affecting 10% of sufferers. However, type-2 diabetes is the result of bad diets and sedentary lifestyles, and is preventable with effective education. Left unchecked, diabetes can result in devastating health complications such as kidney and heart disease, blindness and amputations. Also, diabetes costs the NHS nearly £10bn each year, 80% of which is spent on managing avoidable complications.
 

“Gaping hole” in effective education

DUK director of policy Bridget Turner said, "There is a gaping hole when it comes to diabetes education . . . . This is despite strong evidence that giving people the knowledge and skills to manage their diabetes effectively can reduce their long-term risk of complications . . . . We must get better at offering education to people who are living with diabetes." Dr Sufyan Hussain, a lecturer and clinical registrar in diabetes, endocrinology and metabolism at Imperial College and Hammersmith Hospital, London, has used HealthPad, a digital platform, to develop a portfolio of educational videos for people with diabetes. Here is one about insulin: 

      
                (click on the image to play the video)
 

Calling on the NHS

DUK said that it is “calling on” the NHS to do more. One difference between NHS England and HealthPad is the emphasis they respectively place on digital platforms for delivering diabetes education. Currently, digital platforms are not widely used by the NHS. One possible reason for this is because the NHS is a sanctuary for technophobes. Patients however are not technophobes. General attitudes towards digital healthcare are rapidly changing. The over 65s are becoming increasingly tech-savvy, and quickly adopting digital channels as a source for healthcare information. Research from the Office of National Statistics shows that, between 2006 and 2013, Internet use of the over 65s more than tripled, and their demand for digital health services grew significantly.

Not all health providers are technophobes, and some acknowledge that the NHS has failed to make the most of digital technologies. Changes that these enlightened health providers suggest are contentious; because of the lack of competitiveness the NHS reflects its fragmented single entity, and NHS policy makers stress harmonization rather than competition. This results in the quality of healthcare in the UK becoming a postal code lottery. The NHS cannot expect to improve while there is still a lack of competition and such fragmentation.
               

Network effects

A significant challenge for the NHS is how to deal with digital healthcare platforms: the search engines and websites that constitute the metaphysical health providers in the digital age. What drives new healthcare platforms are economies of scale in gathering and distributing healthcare data and information, which patients want in order to manage their conditions better. The network effects of digital platforms result in more patients finding digital healthcare services ever more compelling. Platforms engage patients, and encourage them to return for updates and more information about their condition. 

Takeaways

It is time that the NHS started to assess the role that platforms can play in the delivery of healthcare. However, the NHS does not know enough to opine with confidence on digital health and the knowledge economy. This does not only result in NHS policy makers being unable to pick technological winners; it also means that technological losers are picking the NHS.

Healthcare and the educational needs of patients must to be conducted in a more open-minded spirit, not simply reflect the status quo, and fall prey to vested interests. The task of healthcare policy makers should be to prepare the UK for the digital future, not to try to stop it happening.