How To Save Diabetes

(1)

Diabetes

The human, social and

economic challenge

(2)

Novo Nordisk commissioned C3 Collaborating for Health to produce this publication. Novo Nordisk has had editorial control and funded its production.

Tackling diabetes is one of the major health challenges of our time, in the UK and globally.

• Almost 300 million people worldwide have diabetes, including almost half a million children under the age of 14 – and the numbers are growing rapidly1_{: by 2030, an}

estimated half a billion people will be living with diabetes2_.

• In the UK in 2010, 150,000 new diagnoses brought the number of people known to have diabetes to 2.78 million3_{. About a}

million more are unaware that they already have diabetes4_{– and many people are only}

diagnosed after having had it for many years, when complications have already set in.

• In 2008, almost a quarter of adults (24% of men and 25% of women aged 16 or over) in England were classified as obese (BMI >30kg/m2₎5_._{Some predictions forecast}

that obesity could affect over half of the population by 20506_{. Overweight and}

obesity often lead to the development of diabetes, and at a relatively young age. Routine care for people with diabetes is itself expensive, but a far greater economic burden is the hospital care required to treat serious diabetes complications, which include kidney failure, heart attack and stroke. Major costs to society include lost economic productivity (as people take time off work through illness and retire early) and the expense of social care.

• highlight the long-term complications of diabetes

• promote prevention, early identification and effective

treatment of diabetes

• make a compelling case for investment NOW – both

personal investment in a healthy lifestyle, and financial

investment in providing the best care possible

• identify the opportunities to improve diabetes care

in the changing NHS environment

• stimulate and challenge key stakeholders to ensure

optimal diabetes care, now and into the future.

Novo Nordisk is a global healthcare company with

87 years of innovation and leadership in diabetes care. The company also has leading positions within haemophilia care, growth hormone therapy and hormone replacement therapy. Headquartered in Denmark, Novo Nordisk employs approximately 30,900 employees in 76 countries, and markets its products in 179 countries.

www.novonordisk.co.uk

C3 Collaborating for Health is a registered charity,

based in London and working globally. Its vision is for the eradication of preventable chronic diseases in the UK and worldwide, and its mission is to foster partnerships and build collaboration between the different organisations that, between them, can overcome the many barriers to a healthy diet, stopping smoking and being physically active.

www.c3health.org

This report aims to:

Diabetes is a huge

challenge to every

(3)

However, there are great opportunities to tackle this epidemic.

• Continued growth of type 2 diabetes – which constitutes about 90% of diabetes cases15_{– is not inevitable. By encouraging}

people to eat a healthy diet and exercise regularly, we can help to prevent type 2 diabetes from developing. By eliminating the risk factors, up to 80% of type 2 diabetes could be delayed or prevented7_.

• By diagnosing diabetes early and treating it effectively, we can prevent or at least delay the complications that lead to so much human suffering, costly treatment and reduced life expectancy. Diabetes care in the UK is good, but not good enough – 40% of people with type 2 diabetes, and 71% of people with type 1 diabetes are not in optimal control8_{. Earlier diagnosis,}

and use of effective modern therapies, would lead to big cuts in the human, social and economic costs of diabetes.

To reverse the epidemic and slow the rising cost of diabetes, we must work with healthcare professionals, government, the media and others to raise awareness of the risks of a sedentary lifestyle and unhealthy diet, and help people with diabetes to achieve effective self-management.

If diabetes continues to grow as

predicted, the already major burden

on the National Health Service will

become unsustainable.

Preventing type 2

diabetes, early diagnosis

and using effective

treatments are a

vital and essential

investment for people

who have diabetes

now, and those at

risk of developing it.

(4)

Id en tif yin g t he dia be te s c ha lle ng e

01

Identifying the

diabetes challenge

What is diabetes?

There are two main types of diabetes: type 1 and type 2:

• In type 1 diabetes, the body does not produce insulin at all, because the body’s defence system attacks its own insulin-producing cells. Type 1 diabetes is usually diagnosed in children or young adults. • 90% of adults with diabetes in the UK have

type 215_{. The pancreas produces insufficient}

quantities of insulin and/or the insulin has a reduced effect on the muscle and liver cells.

What diabetes does to people:

• Symptoms: tiredness, thirst and frequent urination

• Serious short-term conditions:

hypoglycaemia (blood glucose level falls too low) or hyperglycaemia (blood glucose level is too high) can lead to unconsciousness and even death • Stress of dealing with diabetes and

its treatment can cause depression

• Increased risk of heart attack, stroke, kidney damage, blindness, nerve (neural) damage leading to amputation, and reduced life expectancy.

Blindness

4,200 people in England are blind because of retinal damage (retinopathy) as a complication of diabetes15_{. Effective treatment} reduces serious deterioration by more than a third.

Stroke

Stroke is two to four times as likely in people with diabetes17_{. Effective} treatment reduces risk of stroke by more than a third.

Heart attack

Heart attacks are three times as likely in people with diabetes – heart disease accounts for over half of deaths in type 2 patients16_{. Effective treatment leads} to a reduction in risk of heart failure of over 50%.

Kidney failure

Kidney (renal) failure accounts for 11% of deaths in type 2 patients15_. Effective treatment reduces the risk of kidney failure by more than a third.

Amputation

Diabetes is the most common cause of lower limb amputations – 100 people a week affected in the UK15_. Effective treatment reduces the risk of amputations and foot ulcers.

Diabetes mellitus – usually known as diabetes – is an incurable

and progressive condition. It is caused by a failure of the pancreas

to produce insulin (type 1) or to produce enough adequately

functioning insulin (type 2) to enable the glucose from food to

enter the body cells and be used as a source of energy. As a result,

in both types the glucose level in the blood remains too high.

Blood glucose is commonly determined as HbA

_1c

, which is the

haemoglobin bound by glucose.

(5)

01

How is diabetes

treated?

Diabetes treatment aims to keep the level of blood glucose within recommended targets. Allowing blood glucose to remain higher increases the risk of developing serious long-term complications. Treatment must be monitored and adjusted regularly to ensure that the recommended blood glucose levels are achieved.

The treatment for type 1 diabetes is insulin – required from the time of diagnosis – coupled with careful management of diet and exercise. Insulin was discovered in the early 1920s, and treatment has evolved significantly since then. Today’s analogue or ‘modern’ insulins offer more flexibility and freedom to lead a normal life than ever before. They also offer a reduced risk of blood glucose falling too low (overnight, for example), known as hypoglycaemia (see p6). Insulin can be taken in several forms and combinations to suit each individual: long-acting insulin, intermediate-long-acting insulins, short/rapid-acting insulin taken

with meals, or a mix of short/rapid-acting and intermediate-acting insulins.

Type 2 diabetes is initially treated through changes to lifestyle (healthier diet and increased physical activity), followed by oral antidiabetic drugs. These work either by increasing the production of insulin (sulphonylureas and others), by reducing release of glucose from the liver (metformin) or by delaying absorption of glucose from the gut (metformin and alphaglucosidase inhibitors).

Many patients also move on to insulin therapy, which is increasingly acknowledged to delay the onset of complications in type 2 diabetes9,10,11_.

There are now new treatment options to reduce blood glucose. Among these new treatments are the hormone GLP-1, which stimulates insulin secretion and controls blood glucose levels, and DPP-4 inhibitors (gliptins), which block the action of an enzyme that breaks down hormones of the GLP-1 group (the incretins).

Although of only limited use today, research is focusing increasingly on ways in which, in the future, normal blood glucose regulation could be restored, either by introducing more pancreatic cells or by encouraging the cells to regenerate. Typical treatment pathway for type 2 diabetes,

with treatment aims, number of UK patients

2.8 million

patients Diet and exercise:

650,000

patients OAD*:

1.9 million

patients GLP-1:

40,000

patients Insulin:

450,000

patients Delay progression Detect

earlier Treat better earlier complicationsPrevent complicationsDelay

Diagnosis Treatment lifestyle modification

Treatment

(6)

01

10% and over 9% to 10% 8% to 9% 7% to 8% KEY

The timebomb

is ticking

In 2010, 2.26 million people in England had been

diagnosed with diabetes: 5.4% of the population

3

.

England is estimated to have another 800,000 that

have not yet been diagnosed, and the whole UK may

have a million or even more people undiagnosed

4

.

By 2030, this will be much worse…

Diabetes prevalence model

2010

Diabetes prevalence model

2030

The irony is that up to 80% of cases of type 2 diabetes

could have been prevented or delayed

7

. In 2010, over

60% of adults in the UK were overweight or obese

15

,

and the proportion is growing steadily.

Source: Office for National Statistics Crown Copyright material is reproduced with the permission of the Office of Public Sector Information (OPSI). Contains Ordinance Survey data © Statistics. Produced by YHPHO June 2010. Crown copyright and database right 2010.

Both the prevalence of diabetes (the proportion of the adult population known to have diabetes) and the actual number of people with diabetes are rising steadily. By 2030, 9.5% of people in England will either be diagnosed with diabetes or will be on the way to developing it4_{, unless action is taken.}

Type 2 diabetes can be prevented Like the other major chronic illnesses (cancer, heart disease and stroke, and respiratory diseases), type 2 diabetes is strongly influenced by poor diet and lack of physical activity (which lead to obesity). Like them, and largely due to these factors, diabetes is spreading rapidly.

But tackling the trend towards overweight and obesity, and beyond into diabetes, needs far more than individual action8_{. It needs all}

the different organisations, professions and sectors to work together and in their own ways to help people NOT to develop diabetes. Individual people need to be aware of the dangers, and healthcare professionals need to be able to identify people at risk at an early stage and offer effective advice and treatment.

‘ Prevalence of diabetes in

England among adults is

predicted to rise to 8.5% in

2020 and 9.5% by 2030. It is

estimated that approximately

half of the increase is due

to the changing age and

ethnic group structure of the

population, and half due to

increasing obesity. It is therefore

imperative that every effort

is made to ensure diabetes

remains a priority.’

Lorraine Oldridge

Yorkshire and Humber Public Health Observatory

(7)

01

The human cost of

diabetes – a major

impact on people’s lives

The social cost of diabetes –

affecting some groups more

than others

• More than one in ten (11.6%) deaths of adults in England are diabetes-related13

• Life expectancy is reduced, on average, by more than 20 years in people with type 1 diabetes, and by up to 10 years in people with type 2 diabetes14

• One in 10 people admitted to hospital in the UK has diabetes – and in some age groups it can be as many as one in five. Diabetes is related to one in five admissions for coronary heart disease, renal (kidney) disease and foot ulcers15

• Adults with diabetes are 2–4 times as likely to die from heart disease as those without diabetes, and are also 2–4 times more likely to suffer a stroke16,17

• Diabetes is the single largest cause of blindness among people of working age in the UK15_{. Sixty per cent of people}

with type 2 diabetes will have some level of retinopathy within 20 years of diagnosis, as will almost all people with type 1 diabetes19

• About 30% of people with type 2 diabetes develop kidney disease18

• Over 5,700 people with diabetes underwent lower-limb amputations in England in 2008–921

Type 1 diabetes affects people from all social and ethnic groups, but people living in deprived areas are more than twice as likely to develop type 2 diabetes as those with a higher income, especially among those aged between 40–548_{. Type 2 diabetes is strongly}

linked with overweight and obesity – which most affect the least affluent. Diabetes prevalence in England ranges from 5.5% in affluent locations to 10.9% in the most deprived areas – double the rate4,8_.

People from more socioeconomically disadvantaged backgrounds are more likely to be exposed to risk factors such as an unhealthy diet and little physical activity, smoking and poor blood pressure control. In 2008–9 in England, the level of obesity among people with type 2 diabetes was double that of the rest of the population8_.

Diabetes affects proportionately more people from Asian and black ethnic groups. Diabetes prevalence in England averages at 6.9% in white and mixed groups; but for black people it rises to 9.8% and Asian ethnic groups have diabetes prevalence of 14%4_.

40% of people with type 2 diabetes are

at high risk of complications because

of inadequate blood glucose control.

Age 16–34 % Diabetes prevalence (%) by age Age 35–54 % Age 55–74 % Age 75+ %

1.8

5.1

14.3

16.5

We are faced with a growing

burden and shrinking resources

(8)

01

The economic cost of diabetes –

£1 million an hour

In 2010, the NHS spent about £9 billion a year – £1 million an hour22_{– on treating}

diabetes. Much of this is spending on 1.1 million inpatient days each year23_,

with only 6% of the costs15 _{spent on}

prescription medicines.

Paradoxically, endeavouring to improve blood glucose control can lead to hypoglycaemia. If left untreated, major hypoglycaemia can occur, requiring hospitalisation and incurring additional costs to the NHS of £13 million per year25_.

Expenditure on diabetes complications will be even higher in future, unless proper advantage is taken of the opportunities for early treatment with today’s advanced medications.

People with diabetes also face significant personal costs, estimated at £500 million a year23_{, due to missing work, the cost of}

travel for medical treatment, and often loss of employment or early retirement because of ill health. About 6% of people with type 2 diabetes are unable to work at all. Family members may also suffer financially, especially parents of children with diabetes who may be forced to give up work to care for them.

One in 20 people with diabetes needs assistance from social services, at a cost of £230 million per year23_{. More than 75%}

of these costs are for residential or nursing services, with most of the remainder for home help15_{. It has been estimated that}

diabetes doubles the chances of entering a care home, and one in four care home residents have diabetes26_{. Recent evidence}

from Canada has shown that the presence of chronic conditions, such as diabetes, has a much greater impact on healthcare resources than age alone27_.

The costs to the national economy of lost working time and early death from diabetes are very difficult to quantify, but estimates for the UK put the costs to industry at £531 million in 2006, rising to £780 million in 202628,29

53

1

78

0

£million 2006 £million 2026

The cost of caring for people with diabetes is vast, increasing and

threatening to present an unsustainable challenge to healthcare

services within the next 20 years – 94% and the vast majority

of the cost goes on treating diabetes complications.

(9)

01

We can’t let this happen.

1.42 million people

who have

been diagnosed with diabetes today

will have some level of retinopathy

1.05 million people who have

been diagnosed with diabetes today

will have kidney disease

EACH YEAR, between

5,600 and

8,600 people

with diabetes will

have a foot amputated

What does the future hold,

if no real changes are made?

It is hard to predict how diabetes care in England will develop in the near and more distant future, because systems are already changing in an attempt to meet the increasing need. But, as an example, in England – on the assumption that no improvements are made in diabetes prevention, diagnosis or treatment, and on the basis of the data given above,

between now

and 2030…

(10)

01

Diabetes is long term, seriously

debilitating and costly to treat.

Numbers are going up, and

costs are going up.

Unless we face the challenge

NOW, the NHS will be unable

to cope.

01

Identifying the

diabetes challenge

Finding:

Numbers are up

and costs up.

(11)

D ia be te s: a ch alle ng e fo r t he N H S

02

Diabetes: a challenge

for the NHS

The costs to the NHS are already extensive, particularly the cost of complications24:

• each heart attack costs £6,246 in the first year and £1,000 a year thereafter; • dialysis for end-stage renal disease costs

£27,000 or £36,000 a year depending on the procedure;

• amputation costs almost £12,500. Good diabetes management is essential to minimise complications and prevent these costs from spiralling out of control. However, the National Diabetes Audit (which monitors the spread of diabetes and the quality of its care) has voiced some worrying concerns about the efficacy of current diabetes care8_.

In England, the working of the NHS is changing as the Coalition Government’s reforms are put into place.

What will these changes mean for diabetes care?

At present:

• The number of people diagnosed with diabetes is going up every year – the total number has increased by 25% since 2003–48

• In 2008–9, only half of the people in England with type 2 diabetes and a third of people with type 1 diabetes received all nine checks recommended by the National Service

Framework for diabetes8_{. But assessment is}

only part of the answer – the results need to be acted on, adjusting or intensifying treatment as appropriate. Today, 40% of people with diabetes do not have their blood glucose level within the target range, and so have a high risk of future complications • In 2008–9, 90% of children and young

people with diabetes had their blood glucose measured, but only 5% of those aged over 12 had all nine key checks recorded8

• There are huge inequalities in England in the percentage of people with diabetes who benefit from regular measurement of the nine key checks13_{. There is also evidence of}

variation in the investment decisions made by those who commission healthcare services13

• 10% more people with type 1 diabetes suffered from diabetic ketoacidosis (a major complication of diabetes) in the five years to 2009 than in the previous five years (to 2004). This suggests that more people with type 1 (predominantly young people) are not effectively managing8_{their diabetes , but}

also the numbers of young people with type 1 diabetes are rising30

• End-stage kidney disease has almost doubled in six years. Low rates of urine testing suggest that opportunities are being missed to detect kidney disease early8_.

Measure Assess KEY Weight Serum creatinine (indicates kidney function) Blood pressure Urinary albumin (indicates kidney function) Serum cholesterol (level of cholesterol in the blood) Eyes Feet Smoking

Nine key checks for

people with diabetes*

* Recommendations of the National Service Framework for Diabetes (the national guidelines for diabetes care for England and Wales)

Children and young people are at particular

risk of complications – only 5% regularly

have all nine key health checks

HbA_1C

(indicates average blood glucose level during

(12)

02

Empowering

the patient

As diabetes is a chronic disease, planning and managing food, physical activity and medication on a daily basis depend very much on the attitude and decisions of patients themselves, and their families. Successful self-management depends on information and empowerment, but in more than half of England’s primary care trusts, 10% of people or fewer report attending an education course on how to manage their diabetes36_{. Information and support}

are available from medical sources, patient organisations and social networks online, but depend on patients’ initiative to find it.

Patients and healthcare professionals could work together to share the responsibility for more effective diabetes care, through:

• A diabetes charter to establish the care that patients should expect at all stages of diabetes

• Care planning: Routine care decisions and goal-setting by patients and healthcare professionals working together

• Involvement of patients in designing the care they want, where and by whom it is provided • Redress for patients if commissioners do

not provide the care needed by patients within financial constraints

• Greater focus on ring-fencing finance for structured and local education in the evenings and at weekends, when patients can attend • Greater use of patient-recorded outcome

measures (PROMs) as promised by the changing NHS32

• Greater use of patient-related experience measures (PREMs) to help healthcare professionals and commissioners locate services that are easily accessible, culturally sensitive and cost-effective. This could significantly increase appropriate uptake of services, and reduce non-attendance. More imaginative empowerment

of patients would have multiple benefits, e.g.:

• Fewer ambulance callouts to deal with diabetic emergencies such as hypoglycaemia • Fewer working days lost through illness • Reduced impact of diabetes complications • Fewer bed-days needed for inpatient

treatment

• Fewer and shorter hospital stays.

Encouraging people with

diabetes to understand

and take control of their

condition is extremely

important.

‘ Patients need to become

empowered to manage

their diabetes. If enough

help and education is given

to them at diagnosis and

on an ongoing basis, their

need for clinical care will

be drastically reduced. This

can also reduce the cost of

long-term complications to

the NHS and social services

over time.’

Grace Vanterpool Royal College of Nursing

(13)

02

Patient

Informal and social care Primary care Secondary care Policy, administration, others

KEY

* family and friends are the first line of carers ** includes ophthalmologists,

nephrologists, podiatrists, dieticians, diabetes educators *** includes psychology,

endocrinology, neurology **** primary care trusts and

strategic health authorities; changing to GP consortia † GPwSIs are GPs with

GPs/

GPwSIs

†

Private

healthcare

Other HCPs

**

Practice

nurses

Patient

organisations

Social

services

Counselling

services

Family

and friends

*

Diabetes

specialist

registrars

Diabetology

consultants

Department

of Health

Diabetes

specialist

nurses (DSNs)

Other

healthcare

professionals

**

Private

healthcare

Consultants

in other

specialties

***

National Clinical

Director for Diabetes

Diabetes care

commissioners

****

NHS

Diabetes

Politicians

Diabetes

specialist

nurses

Pharmacists

Patient

Who cares

about

diabetes?

(14)

02

How will the changing

NHS affect diabetes care?

The NHS needs to make efficiency savings of up to £20 billion by 2015, an unprecedented amount. Public-health budgets are being transferred to local authorities, and GP practices will commission healthcare services. GP consortia will manage themselves, employing managers from the abolished primary care trusts and strategic health authorities, or buying in management from private healthcare companies. Overseeing the consortia, and allocating and accounting for funding, is a National Commissioning Board. The rationale for commissioning by GP consortia is to ensure that design of patient pathways and local services is always clinically led and based on (more) effective dialogue and partnership with hospital specialists, reinforcing the crucial role that GPs have always played in committing NHS resources through their daily clinical decisions. The Quality, Innovation, Productivity and Prevention (QIPP) initiative33_continues,

identifying how savings can be made and services redesigned to improve both quality and efficiency.

The development of truly integrated care pathways will be essential to improve the quality of care, particularly for long-term conditions. GP commissioning provides a unique opportunity for GPs to work in partnership with local authorities, physicians, nurses and other clinical professionals to improve patient care and support the integration of healthcare. However, making this vision a reality is a major challenge, and the relationship between primary- and secondary-care health professionals, and an agreed consensus of roles, will be critical to the success or failure of these proposals. We need to focus on keeping diabetes high on the national health agenda and a priority within the newly emerging GP consortia.

Novo Nordisk has gathered a range of perspectives on how diabetes care can be strengthened in the context of the changing NHS. The stakeholders’ views have been developed using information from combination of questionnaires, advisory boards, conferences and surveys involving people with a shared concern for preventing, diagnosing and treating diabetes in England, and limiting its impact37_.

Our research focused in particular on:

What are the main

challenges we need

to address?

What are the key

ingredients to improve

diabetes care?

How do we reduce

diabetes complications?

Practice nurse

36% of diabetes consultants believe that the new NHS structure will make diabetes treatment worse

Diabetologists’ survey

The attitude of the medical community is that when you are diagnosed you should slow down your lifestyle. I don’t want to do this. Life is for living

Patient

GPwSI

Secondary care is already

overburdened, so full management of diabetes care and treatment needs to take place at primary level

‘Better outcomes’ can mean

something different for the patient and the clinician – convenience or comfort for the patient or clinical indicators? We need better understanding of what is being improved, and why

‘ Debates between professionals

about primary and secondary care

mean nothing to patients, who

want the best care in the right

place: that means skilled specialist

nurses, knowledgeable GPs and

immediate help from hospital

consultants when needed.’

(15)

02

What are the main challenges

we need to address?

The three-month check-ups need to provide more information and should take feedback from patients more seriously.

People should take more responsibility for their own lifestyle to prevent diseases such as diabetes [the view of 85% of patients asked].

My annual review needs to be handled differently. The doctor used to take an active interest in me and my feet, and this not done any more. I feel that my care has been downgraded.

Junior doctors, who are based on the hospital wards, are usually unable to attend clinics and therefore get very little experience in general diabetes management.

Specialist registrars are getting less experience due to the European Working Time Directive, which has reduced the number of hours they are able to dedicate to diabetes clinics, and reduced continuity of care. In secondary care, there is often insufficient time that consultants can dedicate to diabetes services due to the pressure of general medical inpatients and general hospital management.

There is still a marked lack of understanding as to the importance of diabetes and the best means of self-management.

Specialist registrars

Government needs to support communities to get better exercise and health advice.

Patients

Better outcomes can mean something different for the patient and the clinician – convenience or comfort for

the patient or clinical indicators? Better understanding is needed of what is being improved, and why.

GPwSIs

We need to identify people at risk of diabetes and target high-risk populations early, especially those who are

overweight / have a family history / have had gestational diabetes (diabetes that develops during pregnancy)

We are increasing our training, but are concerned that we have a greatly increased role in commissioning and do not have the skills or resources.

Practice nurses

Focus on weight loss, target high-risk patients, diagnose early and use effective treatment.

DSNs

We are concerned about fragmentation in the NHS.

Pharmacists

GPs

Diabetologists

Politicians

Funding is limiting for access to newer products. We believe patients would have better outcomes if consultants saw them in the early stages of diabetes, when new drugs can be used to best effect.

The government, GPs, the media and the general population must spread understanding of nutrition, obesity, treatment to prevent obesity and prevent diabetes.

Employers need to take steps to provide workplaces that encourage healthy living.

(16)

02

More advertising on the dangers of diabetes in the press and on TV.

We can advise people with diabetes on practical monitoring and self-care, especially the newly diagnosed. Improved data collection and care audits would help patients make more informed choices.

Lifestyle advice related to diet and physical activity, and prescribing exercise.

GPs will need education and support from diabetologists.

We need a national call to action and a national approach to diabetes, especially for type 1 diabetes, children and foot care, and a diabetes framework for young people that particularly supporting education. It is essential to avoid fragmentation of the service.

Regular review, monitoring and treatment adjustment if needed. Moving diabetes into primary care is a great opportunity for GPs to initiate insulin therapy.

Patient education is of key importance, as is building confidence to self-manage. Key factors in improving care for the patient are education and building confidence to self-manage – without these, diabetes would be poorly controlled, however big the drugs budget.

Informing people of side-effects and informing the public of how to treat people with diabetes in an emergency. Regular monitoring is the most important thing.

Dietician support for patients, particularly for those who have manual jobs as they need energy to function and dieticians do not seem to understand the needs.

More information and guidance on medication and combinations.

Developing local expertise and increasing the initiation of diabetes drugs in primary care.

A patient-centred approach to address issues of most concern to the patient, rather than focusing exclusively on the technical aspects of treatment and management.

Better communication with the healthcare professionals and better information.

More diabetes education for primary care is vital so we can initiate more care in the primary setting.

GPwSIs

Practice nurses

Late clinics are needed for people who have normal working hours.

Patients

Diabetologists

Closer work with primary care to improve distribution of knowledge and enthusiasm to primary-care physicians on current approaches to diabetes care – and also improve communication at the primary/secondary care interface. Increase working within a

multidisciplinary team environment, with particular responsibilities for foot clinics, inpatient diabetes reviews with specialist nurses, and continuity.

Specialist registrars

Politicians

DSNs

Nurses are key to providing high-quality patient care.

GPs

Pharmacists

What are the key ingredients

to improve diabetes care?

(17)

02

Use of screening for early identification of diabetes.

Ensure that patients understand fully their condition and treatment options, processes, effects and side-effects.

Informing people of side-effects and informing public of how to treat people with diabetes in an emergency. Diet and regular exercise is vital.

Control of sugar levels by regular checks is the most important aspect. Ignoring this is dangerous.

Being told when first diagnosed what the implications are for the long term, so people get a serious understanding so they can control the condition better. This is important for the young, in particular.

Adequate spending by care

commissioners on effective treatment is necessary – we are concerned that it will not happen. We need robust evidence of the improved control offered by new drugs.

Early diagnosis and cutting the length of time spent on relatively ineffective treatment.

Changing NHS priorities should not allow any public health cuts to reduce programmes to address type 2 diabetes.

We need to acknowledge that diabetes causes a long-term burden. Current targets are always short-term. Patients live through 5–6 parliamentary sessions. If we had a time machine, we could take the payers 20 years forwards to see the complications and then bring them to the present.

Payers understand the need to invest now to prevent future costs, but not many base decisions on that.

Diabetologists

Practice nurses

People need earlier use of treatments to prevent diabetes, more education on the risks of obesity and nutritional advice.

Specialist registrars

Patients

GPwSIs

DSNs

Politicians

How do we reduce

diabetes complications?

(18)

02

Diabetes care in England is good

but not good enough; many

people with diabetes are not in

optimal control and risk future

complications through relatively

ineffective treatment.

More prevention initiatives are

needed, better access to modern

therapies, and more education

for both doctors and patients.

Needs: Prevent,

treat, educate.

02

Diabetes: a challenge

for the NHS

(19)

D ia be te s c are in th e f ut ure

03

Diabetes care

in the future

Ideally, good diabetes care in the future should:

• expand initiatives on prevention

by encouraging all diabetes-related organisations to educate and motivate the general public in addressing the risks of a sedentary lifestyle and poor diet

• diagnose diabetes earlier, by providing extra education in diagnosis for doctors and nurses in primary care; and incorporating diabetes screening into general check-ups

• improve control of diabetes by early access to the most effective therapies,

to maximise the time before complications develop34_{. Poor glycaemic control leads to}

complications and contributes directly to 90% of diabetes cost

• regularly monitor the nine key health indicators and adjust treatment as appropriate. A personalised, flexible care plan for each patient is needed, with the healthcare team responding to changing circumstances, and access to the full range of healthcare professionals as required

• ensure structured education is available to everyone with diabetes35_. All members of the diabetes healthcare team should be familiar with local programmes, which should be an integral part of patient care. Information and education of people with diabetes is vital for the best possible interaction with healthcare professionals, and to ensure that people are engaged and motivated to self-manage effectively. Healthcare professionals involved in care-planning decisions may also benefit from training in motivational techniques and communication skills

• recognise that emotional and psychological support for patients is essential to maintain their commitment to effective self-care (as shown by the Diabetes Attitudes Wishes and Needs (DAWN) study31_{). People with diabetes are}

two to three times more likely than the rest of the population to need emotional support from healthcare professionals, family and friends, both at the time of diagnosis and at later stages20

• acknowledge that children and young people with diabetes have similar clinical needs, but have particular difficulties in relation to self-management in schools, and in their access to specialist healthcare teams who are skilled in paediatric care.

Transition from paediatric to adult diabetes services is a critical time of adjustment, when many young people with diabetes allow their care to lapse, with potentially disastrous results. It is vital for young people with diabetes to keep good control, as they have the greatest number of years ahead of them.

The ideal is an efficient, supportive service, working closely with an engaged, informed patient. This offers medical and emotional wellbeing support to the patient, and is also an effective and prudent use of healthcare resources. This partnership should be complemented by a network of preventive initiatives to reduce the number of people who develop diabetes in the future.

‘ It becomes increasingly important in the changing

health landscape to work collaboratively across

traditional organisational and professional boundaries.

To achieve a Diabetes service that provides a truly

seamless and integrated patient experience requires

active engagement in designing services by those

delivering and receiving them.’

(20)

03

Finding the balance –

spend and save

A health economics model developed for this book, using data for England4_{, shows the}

impact of effective care on the incidence, outcomes and costs of diabetes. It estimates the prevalence and cost of diabetes at yearly intervals from 2010 to 2025 and beyond, when the average levels of key diabetes indicators are compared with what would be found if just 30% of the population with diabetes are treated to the recommended target levels.

The indicators used give an accurate picture of diabetes control. They are: • HbA_1C

• blood glucose levels before and after meals • average blood pressure

• blood fats: HDL (‘good’) and LDL (‘bad’) cholesterol, and triglycerides. The model also shows the effect that treating to target would have on a range of the common complications.

Achieving this level of care will

require courageous decisions

to be taken for the long-term

benefit of people with diabetes.

Starting from 2.26 million people with

diagnosed diabetes in England in 2010

4

,

if 30% are treated to the recommended

target levels, then by 2025:

Controlling the

key indicators has

a very dramatic

and obvious effect

on the costs of

diabetes care,

by preventing

or delaying

complications...

13,223

(21)

03

£263 million – this is the amount of

money the NHS could save by 2030.

This is equivalent to the annual salaries

of 12,400 nurses

Baseline Intervention KEY

£

Direct costs

£ millions

BY 2030, over 17,000

people could have

avoided a heart attack

(N B: Y a xi s do es n ot s ta rt a t z er o) 20 10 20 11 20 12 20 13 20 14 20 15 20 16 20 17 20 18 20 19 20 20 20 21 20 22 20 23 20 24 20 25 20 26 20 27 20 28 20 29 20 30 110,000 105,000 100,000 95,000 90,000 85,000 80,000 75,000 Baseline Intervention KEY

Myocardial infarction

(heart attack)

20 10 20 11 20 12 20 13 20 14 20 15 20 16 20 17 20 18 20 19 20 20 20 21 20 22 20 23 20 24 20 25 20 26 20 27 20 28 20 29 20 30 M ill io ns (N B: Y a xi s do es n ot s ta rt a t z er o) 2.3 2.2 2.1 2.0 1.9 1.8 1.7 1.6 1.5

(22)

03

End-stage renal disease

Baseline Intervention

KEY

… and kidney failure in people

with diabetes could be

reduced by over 40%

20 10 20 11 20 12 20 13 20 14 20 15 20 16 20 17 20 18 20 19 20 20 20 21 20 22 20 23 20 24 20 25 20 26 20 27 20 28 20 29 20 30 (N B: Y a xi s do es n ot s ta rt a t z er o) 20 10 20 11 20 12 20 13 20 14 20 15 20 16 20 17 20 18 20 19 20 20 20 21 20 22 20 23 20 24 20 25 20 26 20 27 20 28 20 29 20 30 13,000 12,500 12,000 11,500 11,000 10,500 10,000 9,500 9,000 Baseline Intervention KEY

Severe vision loss

By 2030, 2,246 fewer

people would have suffered

severe vision loss…

(N B: Y a xi s do es n ot s ta rt a t z er o) 3,750 3,500 3,250 3,000 2,750 2,500 2,250

(23)

03

This analysis shows very clearly that

effective prevention and care could

slow the growth of diabetes, its costs

and complications

PATIENTS HAVE A BETTER QUALITY OF LIFE Early diagnosis means early treatment Fewer complications need less secondary care Fewer patients develop diabetes Better control delays or prevents complications

+

DIABETES CARE COSTS ARE CONTROLLED

(24)

03

Diabetes care

in the future

Good control makes a very

significant difference to the

human and economic impact

of diabetes.

We should prioritise prevention,

early diagnosis and effective

treatment, which prevents or

delays the complications that

cause so much human suffering

and threaten the National

Health Service.

Objective:

Cut the human

(25)

In ve st no w , to sa ve n ow

04

Invest now,

to save now

If the standard of diabetes care in England is to be improved,

inequalities removed, people with diabetes given all the required

checks, and if we are to ensure that fewer people develop diabetes

in future, then concerted action is needed from all the different

interest groups. These are the key challenges facing us today…

If action is not taken, inequalities are likely to grow as GP consortia

make their independent (and potentially inconsistent) decisions on

diabetes care. Doing nothing is not an option at a time when the

NHS and taxpayers need to obtain more value from the budget

allocated to healthcare

13

. The NHS, like many other healthcare

systems around the world, is facing a demand from diabetes that

it may be unable to meet.

What is needed is not just more of the same sort of services,

but a more considered strategy.

More and more people with diabetes8

*More prevention initiatives, especially for

deprived communities *Raise awareness of general public of the vital importance of a

healthy lifestyle *More health promotion, physical

education *Ensure diabetes care services have capacity

to meet the increasing need Failure to diagnose diabetes *Raise healthcare professionals’ awareness of risk factors and early

symptoms

*Make NHS Health Check available

to people at risk of diabetes

Self-management not effective enough

*Make structured diabetes education for patients more available *Make psychosocial support more available

*Stimulate better patient–HCP communication and negotiation of targets, to generate motivation and commitment *Investigate training for

primary care HCPs in motivation and effective

communication

Regional inequality of diabetes care

*Analyse the factors contributing to inequality and the resulting continued increasing costs

of diabetic complications

Complications

*Analyse key factors leading to diabetic complications *Ensure comprehensive monitoring of key indicators *Ensure diabetes is recorded on death certificates as underlying cause of death,

where people have died from diabetic complications

Children and young people

*Maintain effective self-management through

the changing needs of adolescence

*Ensure effective transition from paediatric to adult

care systems

*Ensure diabetes care services for children and young people have

enough capacity for improvement

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04

People with diabetes, and people at risk:

• If you do not have diabetes, are you taking enough care of your own health, through diet and physical activity, to reduce your chance of developing it?

• If you have diabetes, do you have all the information you need to understand and manage your diabetes?

• Are you in close contact with the various members of your healthcare team and can you ask for support when you need it? • Do you feel that you are in control of

your condition?

• Have you been made aware of all your options in your diabetes care?

• Do you attend all your clinic appointments? • Are you eating a healthy diet and regularly

being physically active?

• Are you achieving adequate blood glucose control?

• Young people with diabetes: are you thinking seriously about diabetes control?

GPs:

• In what ways could you improve the care you can offer to your own diabetes patients? • What are other GP practices in your area

providing for diabetes patients – and is there something you could learn from them (or share with them)? How do your outcomes compare with theirs?

• Do you know your patients’ views on the diabetes care you offer them? Or if they would value other services not currently offered?

• What steps does your practice take towards diabetes prevention (e.g. information and guidance on weight management, diet and physical activity)?

• Do you have access to all the support you would like for diabetes patients from other NHS services (e.g. dieticians, ophthalmologists, psychologists)? • Do you have a satisfactory flow of

information and support with diabetologists in secondary care?

• Do you assess your spending on diabetes care – routine, for emergency hospital admissions and for complications? • Do you assess how many of your patients

develop diabetes complications that could have been delayed or avoided with earlier or more intensive treatment?

The challenge:

What should

YOU

be doing

NOW

?

Ensuring that the UK’s changing

health systems offer the best possible

care for diabetes will be repaid, in

human, social and economic terms –

but to achieve this requires the

involvement and commitment of

all participating groups.

As a person with a professional or personal interest in diabetes, are you prepared to accept that 10% or more of the NHS budget is spent on diabetes alone? Can we afford to let type 2 diabetes continue to affect more and more people, depleting our healthcare resources?

Take a look at the aspects of diabetes care closest to YOU. What could you be doing NOW to ensure that diabetes care improves in the new NHS environment?

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04

Diabetes specialist nurses and practice nurses:

• Do you have sufficient responsibility and authority within your diabetes care team? • What is the critical role you can play

in ensuring secondary-care expertise is retained and shared, as responsibility for diabetes care shifts to GP consortia? • What proportion of your services need to be

delivered in a hospital setting?

• What could be moved out of hospital, and where would you deliver them instead? • Can you see opportunities for developing

your role that would contribute to more effective care for the patient, or more effective use of time for other team members?

Diabetes educators, dieticians and psychologists:

• Are you routinely invited to provide education and information / nutritional advice / psychological support for diabetes patients within your own area?

• Can you suggest how your skills could be made more widely available? Pharmacists:

• Are you visible as members of the care team for people with diabetes?

• Are members of the general public aware of the resources you offer to help them maintain good health?

• Can you see further opportunities for contributing to primary and secondary prevention in diabetes?

Diabetes commissioners:

• Within the constraints of the NHS today, what opportunities can you see for improving diabetes care?

• What are the criteria for balancing investment in improved prevention / care services against long-term reduction in diabetes complications?

• What is the potential for strengthening diabetes care for children and young people to prevent a greater burden of complications in the future?

• How well do your services meet the needs of your population?

Diabetology consultants:

• How could the balance of patient care be more effectively shared with GPs? • Could your input be used more effectively

than it is at present? In what way? • Do you assess your spending on diabetes

care – both routine outpatient care and inpatient treatment for complications and emergencies?

• What services need to be delivered in a hospital setting, and which treatments can move closer to patients?

• How do you share your expertise with local commissioners of diabetes services? • What new relationships need to be

developed with your primary-care colleagues to ensure that high-quality diabetes care is maintained in the evolving NHS landscape?

Politicians:

• Are you fully informed on the implications of the NHS changes for the care of long-term conditions such as diabetes?

• Will you urge the Health Select Committee to hold an enquiry into the prevention and treatment of type 2 diabetes?

• Are you aware of the threat presented by the growth of diabetes to the economic resources of the NHS, nationally and in your constituency?

• Do you know how well diabetes care is delivered in your constituency?

• In what ways can you support the best use of the knowledge and skills of healthcare professionals, and the most effective use of today’s available medications and technologies, to stem the growth of diabetes?

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04

Giving people with diabetes a

better quality of life – both now

and for as long as possible – means:

• diagnosing early

• treating effectively

• providing education, information

and support to help their

self-management.

And, of course, avoiding diabetes

through a healthy lifestyle is

even better.

‘ Only if we had a time machine, we

could have taken them 20 years

forward to see the complications, and

then bring them back to the present.’

Dr Reggie John

Heart of England NHS Foundation Trust

Result:

Better care now

means a better future.

04

Invest now,

to save now

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21_{NHS Information Centre Clinical and Health Outcomes} Knowledge Base, www.nchod.nhs.uk

22_{Diabetes.co.uk. Diabetes costs the NHS one million} pounds an hour, 27 October 2010 http://www.diabetes. co.uk/news/2010/Oct/diabetes-costs-the-nhs-one-million-pounds-an-hour-93645072.html

23_{Roberts S. Working together for better diabetes care:} Clinical case for change. Department of Health, May 2007

24_{Adapted from Clark et al (2003) “The impact of diabetes} related complications on healthcare costs : results from the United Kingdom Prospective Diabetes Study (UKPDS Study No. 65)”, Diabetic Medicine, 20, 442–450. Inflation based on PSSRU 2008/9 HCHS inflation index, available from www.pssru.ac.uk

25_{Leese et al. Frequency of severe hypoglycemia requiring} emergency treatment in type 1 and type 2 diabetes – A population-based study of health service resource use. Diabetes Care 26,1176–180, 2003

26_{Diabetes UK. Good Clinical Practice Guidelines for care} home residents with diabetes. January 2010. http://www.diabetes.org.uk/Documents/About%20Us/ Our%20views/Care%20recs/Care-homes-0110.pdf 27_{Canadian Institute of Health Information. Seniors and}

the health care system: What is the impact of multiple chronic conditions? January 2011. http://www.cihi.ca/ CIHI-ext-portal/internet/en/Document/types+of+care/ primary+health/RELEASE_27JAN11

28_{MODEL Group. Diabetes: Finding excellence?} http://www.novonordisk.co.uk/Images/2007/.pdfs/ MODEL_Final_LR.pdf

29_{Bramley-Harker E, Barham L. The human and economic} value of pharmaceutical innovation and opportunities for the NHS. NERA Economic Consulting for the ABPI, 2004

30_{Gardner SG, Bingley PJ, Sawtell PA, Weeks S, Gale EAM,} EURODIAB and Barts Oxford Study Group. Rising incidence of insulin dependent diabetes in children aged under 5 years in the Oxford region: time trend analysis British Medical Journal 315:713–17, 1997

31_{Funnell MM. The Diabetes Attitudes, Wishes,} and Needs (DAWN) Study, Clinical Diabetes; 24: 154-55, 2006.

32_{Equity and Excellence: Liberating the NHS. UK Coalition} Government White Paper, July 2010

33_{NHS Evidence – QIPP. http://www.library.nhs.uk/qipp/} 34_{Holman RR, Sanjoy KP, Bethel MA, Matthews DR, and}

Neil, HAW. 10-Year follow-up of intensive glucose control in type 2 diabetes. New England Journal of Medicine 359, 15, 1577–89, 2008. http://www.ncbi.nlm.nih.gov/pubmed/18784090 35_{National Institute for Health and Clinical Excellence.}

Type 2 diabetes: newer agents for blood glucose control in type 2 diabetes (CG87), 2009. http://guidance.nice. org.uk/CG87/Guidance also: http://www.nice.org.uk/ nicemedia/live/11983/40803/40803.pdf

36_{Healthcare Commission. Managing diabetes –} Improving services for people with diabetes, 2007 37_{Diabetologists survey conducted by MedeConnect}

Healthcare Insight, October – November 2010, involving 60 consultant diabetologists. Patient survey conducted by Pure Associates Ltd, December 2010 – involving 48 diabetes patients. GP Advisory Board held in Birmingham, September 2010. GPs with Special Interests’ Advisory Board held in Birmingham, September 2010. Opinions and views also obtained from attendance at Nursing in Practice Event held in Birmingham, November 2010

1_{International Diabetes Federation. The Diabetes Atlas} (4th edition), 2009

2_{International Diabetes Federation. New diabetes figures} in China. IDF press statement, 25 March 2010 3_{Quality and Outcomes Framework, 2009–2010} 4 _{Diabetes prevalence model – Key Findings for England.}

http://www.yhpho.org.uk/default.aspx?RID=81090 APHODiabetesPrevalenceModelKey

FindingsforEngland[1].pdf

5_{NHS Health and Social Care Information Centre.} Statistics on obesity, physical activity and diet: England, 2010. http://www.ic.nhs.uk/webfiles/publications/ opad10/Statistics_on_Obesity_Physical_Activ ity_and_ Diet_England_2010.pdf.

6_{Department of Health. Foresight: Tackling obesities:} future choices, 2007. http://www.who.int/chp/chronic_ disease_report/contents/part1.pdf

7_{World Health Organization. Preventing chronic diseases: A} vital investment, 2005. http://www.who.int/chp/chronic_ disease_report/en/index.html

8_{National Diabetes Audit 2008–2009.}

http://www.ic.nhs.uk/services/national-clinical-audit-support-programme-ncasp/audit-reports/diabetes 9_{Turner R, Holman R, Stratton I et al. Tight blood}

pressure and risk of macrovascular and microvascular complications in type 2 diabetes (UKPDS 38). BMJ 317, 703, 1998

10_{Stratton I, Adler A, Neil H et al. Association of glycaemia} with macrovascular and microvascular complications of type 2 diabetes (UKPDS 35): prospective observational study. BMJ 321 (7258):405–12, 2000

11_{UK Prospective Diabetes Study Group. Intensive blood} glucose control with sulphonylureas or insulin compared with conventional treatment and risk of complications in patients with type 2 diabetes (UKPDS 33). The Lancet 352:837, 1998

12_{Cedegim Strategic Data UK Ltd. (1) CSD Patient Data} Report Type II seg (OAD - total) - Report AH [NOV 20930_ADHDN2]. (2) CSD Patient Data Report Insulin total - type II seg - Report AH [NOV 13720_ADHDN2]. (3) Patient Data Report Diabetes R18 - Report 18 [Nov_A1U_018_DN2]

13_{NHS Atlas of Variation in Healthcare, November 2010.} http://www.rightcare.nhs.uk/atlas/index.html 14_{Department of Health. National Service Framework}

for Diabetes: Standards 2001, www.dh.gov. uk/en/Publicationsandstatistics/Publications/ PublicationsPolicyAndGuidance/DH_4002951 15_{Diabetes UK. Diabetes in the UK 2010: Key statistics}

on diabetes

16_{Folsom AR, Szklo M, Stevens J, Liao F, Smith R, Eckfeldt} JH. A prospective study of coronary heart disease in relation to fasting insulin, glucose and diabetes: the Atherosclerosis Risk in Communities (AIRC) Study. Diabetes Care 20:935–42, 1997

17_{Folsom AR, Rasmussen ML, Chambless LE, Howard G,} Cooper LS, Schmidt MI, Heiss G. Prospective associations of fasting insulin, body fat distribution and diabetes with risk of ischemic stroke. Diabetes Care 22:1077–83, 1999 18_{Roberts, S. Turning the corner : Improving diabetes care.}

Department of Health, 2006.

19_{Fong DS et al. American Diabetes Association policy} statement on diabetic retinopathy. Diabetes Care 26:226–9, 2003

20_{Emotional and psychological support working group} of NHS Diabetes and Diabetes UK – March 2010. Emotional and psychological support and care in diabetes, 2010. Emotional_and_Psychological_Support_ and_Care_in_Diabetes.pdf from: http://www.diabetes. org.uk/Professionals/Publications-reports-and-resources/Reports-statistics-and-case-studies/Reports/ Emotional-and-Psychological-Support-and-Care-in-Diabetes/

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NHS Diabetes

www.diabetes.nhs.uk/

National Diabetes Audit

www.ic.nhs.uk/services/national-clinical-

audit-support-programme-ncasp/diabetes

Diabetes UK

www.diabetes.org.uk/

Novo Nordisk

www.novonordisk.co.uk

NovoMedlink

www.novomedlink.co.uk/

Changing Diabetes®

www.changingdiabetes.co.uk

C3 Collaborating for Health

www.c3health.org

3Four50

www.3four50.com

Acknowledgments

Anna Morton NHS Diabetes Lorraine Oldridge

Yorkshire and Humber Health Observatory

Professor Sir George Alberti Grace Vanterpool

Royal College of Nursing

Dr Jessica Triay

NHS South West

and to Dr Vivienne Kendall, our writer.

Drafts of the publication were circulated to the Advisory Board for their comments. With grateful thanks to the

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