Riding the Diabetes Rollercoaster

A Complete Resource for EMQs, v. 2

Helen Cooper, Robert Geyer

• Publisher: CRC Press
• Year: 2018
• Print ISBN: 9781846190452
• eBook ISBN: 9781315347516
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

This work includes foreword by Ian Botham, OBE, former England Cricket Captain and father of a daughter with Type 1 Diabetes. This groundbreaking book reveals how science and medicine have traditionally tried to make diabetes simple and orderly, despite its obvious messiness and complexity. The result has left patients, carers and health professionals confused and frustrated. Using complexity science, "Riding the Diabetes Rollercoaster" provides a radical new approach to understanding and managing diabetes that embraces its uncertainties and challenges. From a complexity perspective, the diabetes rollercoaster is normal and is a mirror of life itself. Learning to embrace and use the tools of complexity can completely alter your approach to diabetes. "Despite huge amounts of research, funding and effort, diabetes - like many other chronic illnesses - refuses to go away or even to get any easier to deal with. Health professionals have grown increasingly frustrated with their inability to develop radical improvements; patients and carers struggle to comply with complicated self management regimes. We believe that Complexity offers a way forward. Learning to balance rather than control diabetes is the ultimate goal of diabetes management." - Helen Cooper and Robert Geyer, in the Preface.

Chapter 1

Diabetes and its treatment: yesterday and today

Diabetes ... a melting down of the flesh and limbs into urine.... The course is a common one ...; for the patients never stop making water.... The nature of the disease then is chronic, and it takes a long period to form, but the patient is short-lived if the constitution of the disease be completely established; for the melting is rapid, the death speedy.

(Aretaeus the Cappadocian, second century ad)¹

The [diabetic] patient has a continual thirst, with some degree of fever; his mouth is dry, and he spits frequently a frothy spittle. The strength fails, the appetite decays, and the flesh wastes away till the patient is reduced to skin and bone.

(Dr William Buchan, Domestic Medicine, 1785)²

Diabetes mellitus is a condition in which the amount of glucose (sugar) in the blood is too high because the body cannot use it properly. Type 1 diabetes develops if the body is unable to produce any insulin. . . . Type 2 diabetes develops when the body can still make some insulin, but not enough, or when the insulin that is produced does not work properly (known as insulin resistance). . . . The main aim of treatment of both types of diabetes is to achieve blood glucose, blood pressure and cholesterol levels as near to normal as possible.

(Diabetes UK, 2006)³

Diabetes is not new and has been a serious plague on humanity throughout recorded history. It is a permanent and chronic condition. You either have it or you don’t, and there is no such thing as mild diabetes. It invades individuals’ lives both day and night without respite, and at the present time there is no known cure. Control is therefore the aim, but the experience of trying to control diabetes is like riding a ‘rollercoaster’ that never ends. This ride covers ‘hypos’ and ‘hypers’ associated with the lifestyle staples of diet and exercise, not to mention other normal life experiences such as illness, stress, hormonal changes and even temperature fluctuations. Alongside these are the effects of drug treatments – tablets and/or insulin injections. Balance is the key word. It acknowledges and captures the juggling act that self-management entails to achieve the balance of blood glucose control, alongside control of lipids (fats, including cholesterol) and blood pressure. This need for balance stems from a very simple fact – that the innate mechanisms for maintaining normal blood glucose levels within the body have gone awry. If uncontrolled, this can lead over time into cascading detrimental effects on organs within the body, most notably the eyes, kidneys, nervous system and heart.

In many ways the aim of balancing diabetes is no different to the multiple balances that everybody has to maintain in life in terms of what they eat and drink, and the amount of activity they maintain. What is different, however, is that with diabetes the balances are essential and more difficult to maintain. In essence, achieving ‘balance’ is similar to trying to drive on a busy road. The driver must stay within the road boundaries and follow certain rules to prevent accidents happening. It could be said that for people with diabetes, the road boundaries are tighter than for others, and this requires more ‘rules’, or at least good adherence to the ‘rules.’ Such discipline provides the challenges – mental, physical and social – of learning to self-manage or DIY the condition. Overcoming these challenges is not easy! As one patient wrote:⁴

You come in, they say ‘Oh, you’ve got diabetes ...’ and you are running round like your tail’s been cut off thinking ‘What am I going to do?’

The demanding regime and its intimate relationship with day-to-day activities mean that the individual is much more responsible for, and in control of, the disease process. In essence, self-management is the ‘cure’, since it helps to prevent the very real risks of complications associated with the disease. The problem with learning how to balance this complex picture is that it takes more than just memorising when and what medicines to take and what foods to avoid. No one can live a life so regimented that diabetes could be perfectly controlled. So how can a patient or a carer with no biomedical background make informed decisions about the condition?

To answer this question we need to step back, cover a few basic points and take a brief look at the history of diabetes and its treatment.

Bad and good news

Fact 1

The onset of diabetes relies upon a combination of genetic and environmental ‘triggers’, such as inadequate nutrition or poor eating habits. In developing countries, starvation affects the intrauterine development of infants, which leads to the development of diabetes in later life. In the developed world, obesity, in particular central body fat (the ‘apple shape’) is strongly linked to insulin resistance. In the latter case, the body produces insulin, but is unable to use it properly. These two opposing dimensions – starvation and obesity – are the main reasons behind a frightening rise in diabetes worldwide.

Fact 2

Numerically, the disease is reaching epidemic proportions. A study that looked at all 191 World Health Organization (WHO) member states found that the prevalence of diabetes for all age groups worldwide was 2.8% in 2000 and estimated to be 4.4% in 2030. The total number of people with diabetes is projected to rise from 171 million in 2000 to 366 million in 2030. The study findings indicated that the ‘diabetes epidemic’ will continue even if levels of obesity remain constant. However, given the rising levels of obesity, it is likely that these figures are an underestimate of what the future will hold. Diabetes, it seems, is a global plague that can affect anyone – no one is impervious to the disease. It is a serious condition for the individual, and its rapidly increasing prevalence is a significant cause for concern. The most important factors contributing to this growing prevalence are ageing, urbanisation (predominantly in developing countries), sedentary lifestyle and increasing prevalence of obesity.⁵

Fact 3

These large numbers are obviously associated with high costs – in particular, hospital admissions to deal with the long-term complications of the condition. In many cases these complications could and should have been prevented. In the UK, for instance, close to £1 in every £10 is spent on treating diabetes and its complications in hospitals. Overall estimates of costs in the year 2000 amounted to 9% of National Health Service (NHS) costs – that is, £5,185,314,000. This is equivalent to:

• £99,717,567 a week
• £14,245,367 a day
• £593,560 an hour
• £9,893 a minute
• £165 a second.⁶

Fact 4

Despite a number of medical advances, patient self-management remains the cornerstone of diabetes treatment. Unfortunately, self-management is not only complicated and challenging, but can be very time consuming. A recent American study found that ‘more than three hours a day would be required for an average type 2 diabetes patient to follow to the letter all the home-care tasks recommended.’ They found that on average 96 minutes were needed for monitoring blood glucose, record keeping, medication management, foot care, problem solving and exercise, and a further 106 minutes per day were needed for meal planning, shopping and preparation.⁷ Such findings highlight the personal effort and cost involved in successfully managing diabetes – a few pills or injections just won’t do it.

Fact 5

There is some good news. Happily, the rates of complications have begun to decline in many parts of the world. This is due to several factors, including more sophisticated screening techniques such as the digital eye-screening cameras, innovative treatments such as the statin drugs – described as the new cholesterol-lowering ‘antibiotic’ – and improved specialist care due to adoption of international benchmarks aimed at improving disease management.⁸ However, despite all of these advances, we still haven’t found effective answers to controlling the rise in prevalence of the disease, its management and escalating costs. Why not? To answer this question, we need to explore what has gone on before.

Diabetes: the historical perspective

Diabetes mellitus has been around for a long time. In 1500 bc, early Egyptian healers noted that ants were attracted to the urine of people with a mysterious wasting disease from which children died very quickly and older people struggled with devastating complications. The ‘Ebers Papyrus’, an Egyptian document written in the late third century bc, first documented it as a condition ‘without retention’, and Apollonius of Memphis coined the word ‘diabetes’, meaning ‘to go through’, sometime around 250 bc. Other descriptions included that of Galen, a disciple of Hippocrates in the first century ad, who described it as ‘diarrhoea of the urine’ and the ‘thirsty disease.’ However, not until 1425 did the word ‘diabetes’ appear in an English book. By 1670, over 100 authors had written about it.^9,10

During the seventeenth and eighteenth centuries, researchers began to explore the diagnosis of diabetes and the role of insulin. Thomas Willis in 1674 and later Matthew Dobson in 1776 identified the presence of sugar in the urine and thereby a means of diagnosing the disease. Willis proposed that the sugar appeared first in the blood and then later in the urine, and Dobson provided experimental evidence that confirmed this hypothesis. The descriptive word ‘mellitus’ (Latin for ‘honey’), was later added by Cullen in 1769 to separate it from diabetes insipidus, which refers to excess urination without sugar, a completely different disease. Other researchers of note include Claude Bernard in 1857, who identified the vital role of the liver in diabetes through the location of glycogen, the body’s ‘hidden’ store of glucose. Paul Langerhans located what were subsequently called the islets of Langerhans in the pancreas as the body’s production line for insulin. A number of people were involved in the isolation of insulin, ‘iletin’ as it was originally called, and its role in lowering blood glucose in dogs from which the pancreas had been removed. They included the Romanian, Paulescu, and the better-known Canadians, Banting, Best, McLeod and Collip. Eli Lilly and Company started commercial production of insulin in America in 1923. In the 1930s, research by Himsworth clearly demonstrated the difference between type 1 and type 2 diabetes. In the 1950s, the first oral medications for type 2 diabetes were developed, and since that time a variety of convenient blood testing and diagnostic tools have been developed.

Looked at from this perspective, the diagnosis and understanding of diabetes are clearly a triumph for traditional scientific medicine. Knowledge and understanding have grown over time. More and better treatment options are available, and a vaccine for type 1 diabetes prevention is even being developed! Yet the disease refuses to go away. In fact, as we ...

Table of contents

• Cover
• Title Page
• Copyright Page
• Contents
• Foreword
• Preface
• About the authors
• Introduction
• 1 Diabetes and its treatment: yesterday and today
• 2 What is complexity?
• 3 Learning how to use ‘complexity mapping’
• 4 Learning to play the right ‘mind games’: moving from anxiety to balance
• 5 Managing the complexities of diabetes
• 6 Diabetes and the ‘cascade of complexity’
• 7 Complementary management of diabetes
• 8 A call for personal and professional reaction
• Index