Handing control to the patient - structured education in diabetes

This year we celebrate the centenary of the discovery of insulin, when researchers at the University of Toronto successfully treated the first individual with T1DM. It was undoubtedly a major breakthrough. Insulin transformed children and adults destined to die within 2-3 years into healthy individuals within a few weeks and many went on to live full and productive lives. Yet the optimism that the ready availability of insulin would result in a cure for a previously fatal disease was gradually replaced by a realisation that insulin was not a panacea. Over the years that followed, many of those on treatment developed serious microvascular complications resulting in blindness, amputation and renal failure. It gradually became clear that keeping glucose levels close to normal was key. But since blood glucose had to be measured in hospital labs and those with diabetes were only able to measure glucose in their urine the challenges of keeping levels at target were immense. Episodes of severe hypoglycaemia were common, and many authorities considered it too dangerous to attempt to keep glucose at near-normal levels. With the advent of glucose monitoring in the late 1970s, pioneers such as Berger and Mühlhauser realised that this revolutionary technology could be used by patients at home to enable them to manage their diabetes themselves. Positive trial results were ignored by many healthcare professionals and it took another 30 years for the UK diabetes establishment to adopt this approach. In this chapter I describe how structured education in diabetes was developed, the evidence for its effectiveness and the remaining challenges which still need to be overcome. Following the discovery of insulin, most healthcare professionals were slow to realise that it is the person with diabetes (or their family) who holds the key to implementing effective self-management. Yet there were some professionals around the world who grasped this. Perhaps the first was Elliot Joslin, who was working in Boston when insulin was discovered. He realised rapidly that for treatment to work properly the patients had to be trained to be their own doctors and had to learn to adjust insulin themselves. He wrote a manual for patients in the early 1920s and, in a paper he wrote in 1946, he reflected that any insulin therapy was "a waste of time and money unless the patient was thoroughly instructed to manage his own case”.1 Karl Stolte, a paediatrician working in Rostock in Germany, argued in 1929 that children should be allowed to eat freely with insulin adjusted according to the amount of glucose in their urine.2 It appears this was too much for the medical mainstream in Germany at that time and his insights went unheeded. Some British physicians did grasp the importance of self-management. RD Lawrence, whose own life was saved by the discovery of insulin, became head of the diabetes department at King’s College Hospital and by 1929 had written two books, “The Diabetic Life” and “The Diabetic ABC” which provided instruction on managing diabetes for both professionals and patients.3 However, the general view in the UK was that doctors should remain in charge of treatment. Robert Tattersall, who together with Peter Sönksen and Clara Lowy were the first clinicians to introduce blood glucose monitoring into clinical practice in 1977, has written that an abstract, describing the Nottingham experience in using the technology in pregnancy, was rejected by the then BDA Medical and Scientific meeting. Furthermore, during the subsequent meeting, the proposition that patients could monitor their own blood glucose was met ‘with incredulity’ and a view that even if it was possible, ‘it would be dangerous’.3 Yet at the same time, others in Europe realised the potential of self‐monitoring of blood glucose (SMBG) to transform diabetes care by using the technology as part of a structured training package. Jean Philippe Assal had, with others, developed the concept of Therapeutic Education,4 an approach incorporating principles of modern adult education to promote self-management skills encouraging patient autonomy. Muḧlhauser and Berger, working in the WHO centre in Dus̈seldorf, incorporated SMBG into a structured education course diabetes teaching and treatment programme (DTTP).5 They attempted to reproduce the physiology of insulin secretion therapeutically by separating insulin delivery into a longer-acting basal insulin (with NPH insulin injected twice daily) to control blood glucose in between meals and they covered meals with soluble insulin given before eating. In the UK, carbohydrate exchanges had been used to impose a rigid eating pattern in response to fixed doses of insulin prescribed by the physician, which meant expecting adults and children to eat the same amount of carbohydrate (CHO) at the same time each day. In marked contrast, the DTTP promoted ‘dietary freedom’, with no forbidden foods and those with diabetes calculating their own insulin dose based on anticipated CHO intake and current Address for correspondence: Simon Heller Room FU24, School of Medicine and Biosciences, University of Sheffield, Beech Hill Road, Sheffield S10 2RX, UK E-mail: s.heller@sheffield.ac.uk