Expectations: the role of the expert patient

Consistently across all observed courses, students were encouraged by tutors to adopt certain ideals. Among these were concepts of empowerment, expertise and independence. These principles are keystones of much patient education in the last couple of decades.1 ,20 As can be seen in the extract below, when students made statements suggesting blind compliance or dependence on doctors, they were gently challenged to think of themselves differently; as an empowered and expert patient, no longer dependent on doctors for decisions, but able to talk about their treatment requirements with healthcare professionals as an equal: Student: ‘My consultant told me to [take insulin at a certain time].’ Tutor: ‘You'll all be DAFNE trained by the end of the week, you will be having a discussion with your doctors about your insulins!’ Observation field notes

The structure and complexity of DAFNE course content has been written about in depth elsewhere, including the benefits for patients in terms of blood glucose control; but the amount of knowledge imparted, and the quantity of self-management work, is not always emphasised.5 ,21 Students in this study were expected to learn how to take control of their own treatment regime at a very high level, interpreting complex patterns of blood glucose results over time in order to make constant alterations to insulin dose and timing. This included understanding not only how to count carbohydrates, but also the action and interaction of different kinds of insulin, the interaction of foods to create an overall glycaemic index of a meal, the impact of hormones, stress, alcohol, different kinds of exercise, travelling across time zones, managing pregnancy and breast-feeding, and how to self-manage specific problems such as dawn phenomenon, rising blood glucose during various severities of illness and hypoglycaemia unawareness.

In the DAFNE narrative, the patient is not a passive victim of circumstance. In the following extract, a student's summary of previous experience as an inpatient is listened to, then a more active, independent role is suggested for the future: Student: ‘Whenever I've gone to hospital, because I'm diabetic, they put me on a drip, everything.’ Tutor replies that the Sick Day Rules [specific self-management guidelines] are there ‘to help you avoid that situation’. Observation field notes

In summary, the DAFNE graduate is taught not only key information, but also to accept a new role for him or herself in the health system and the wider world: as empowered, knowledgeable and independent.

Experience—taking on the new role

Participating in the kind of detailed, comprehensive self-management education offered by DAFNE had a very positive impact on the personal lives of nearly everyone in the study. Participants from all groups talked of ‘life-changing’ experiences on the course, and of having been freed from the ‘shackles’ of a confusing or restrictive treatment regime by being given ‘the tools of the trade’ to manage a central aspect of their own lives. I mean I really have nothing but praise for [DAFNE], it has been properly transformative in … in a fundamental way, I've got a fundamentally better understanding of what it is that's actually wrong with me. Um… and that, yeah, that just allows me to be a lot freer. Harry, new student, speaking in post-DAFNE interview

Those who had already built up self-management expertise precourse talked about ‘fine-tuning’ or solving a specific problem that had been causing them difficulty; nobody was entirely negative about attending DAFNE.

In short, students were largely comfortable with the new patient role being offered them via DAFNE. Knowledge, and independence from doctors and restrictive regimes, were mostly valued, although support from DAFNE specialists postcourse was very much appreciated by some. The relationship of students to ‘empowerment’ was slightly less clear cut; although power and control over diabetes was hugely enhanced by DAFNE, empowerment within the health system was more problematic, as we describe below.

Consequences: a clash of roles

Postcourse, participants were often cast into ambiguous roles in healthcare interactions. Both the new student and the graduate groups had similar experiences; frequently, the condition-specific biomedical and practical information they had learnt was far greater than that of their doctors or nurses.

This was not necessarily a problem for everyone. Jane, below, described a positive experience with a primary care doctor who was keen to learn more and trusted her expertise: I had an insect, I had a mozzie bite that closed my eye, bit me on the eye just here, the soft bit above the eye. And my eye swelled up, and I went to a walk-in clinic. And they wanted to give me steroids, which obviously push your blood sugar up, and I said ‘well I know that's going to happen, I can manage my blood sugar if it does shoot up, I can increase my insulin and I use the DAFNE, do you have DAFNE?’ and I had to go step by step through with [this doctor] how it worked. And he wrote loads of notes; it was really interesting, he wrote loads and loads of notes. Jane, DAFNE graduate, talking six years post-course

Some participants simply avoided less specialist healthcare professionals if they could, relying instead on advice from their DAFNE tutors. However, this was not always possible, and in many health interactions, patients and healthcare professionals struggled to manage the tensions that arose from the partial role-reversal of expertise after self-management education. In some cases basic or even inaccurate information was imposed on patients, who on the whole swallowed their annoyance in silence: I went to a nurse […] for like, I can't remember what even for, a flu jab or something, um … and, um […] she started giving me advice about my blood sugars and it really, it really got on my nerves, because they were just completely, completely counter to everything that I'd just been taught. And, and obviously not right? Interviewer: What did you say? I, I didn't, I didn't say anything. I just left it. Interviewer: So she didn't know that you… what you were thinking? No. There's no point getting into an argument. James, new student, speaking in post-DAFNE interview

Where this tension became more serious was in situations where a less knowledgeable doctor had considerable power over the expert patient. This was most often seen in interactions with general practitioners (GPs), who restricted prescriptions, sometimes surreptitiously, when they did not understand the importance of blood testing to the patient's self-management regime. Using DAFNE principles, students learn how to achieve tighter, smoother blood glucose control by performing blood tests at least four times a day, using the results to make decisions about insulin dosage as well as ensuring that dangerously high or low blood sugars could be avoided. For some, this meant a considerable increase in test strip requirements as they took on the extra work to improve blood glucose control. Although course tutors provided letters for GPs explaining the necessity for these adjustments, interviewees reported having to be ‘quite tough’ to successfully negotiate with primary care teams who were reluctant to absorb the rise in short-term costs. Even when changes had apparently been agreed, they were sometimes reversed by healthcare staff without explanation or warning.

Julia's story, below, is an example of the kind of interaction that could arise in these circumstances. Although her GP did not refuse the prescription request outright, the dispensary simply reduced the amount asked for without explanation: ‘So I went to pick up my prescription, I'd asked for four boxes, so I went to pick up my prescription when they were ready to go and pick it up, my husband got it and there were only two. So I rang them up. I said: ‘There are only two boxes.’ ‘- That's all you need.’ So I said: ‘Oh right. Why's that?’ So she said, um: ‘Well you only do two tests a day, and that will last you for months.’ [..] So I said: ‘So, as you can see on {the letter from the diabetes specialist tutors} they're asking for me to have adequate supplies to do x number of blood tests a week.’ ‘- Well I think it's quite ridiculous, you don't need that many.’ Julia, diabetic 50 years, new student speaking post-DAFNE.

Phil, mentioned earlier, was another typical example. He recontacted RS 6 months after data collection ended, with an update: his GP, who had originally agreed to prescribe blood test strips, had subsequently taken the strips off repeat prescription and insisted on Phil taking time off work every month to come into the surgery and justify the next month's supply. Since this was not always possible to do, he had to reduce his testing and his blood glucose had begun to rise again. As Phil put it, his doctor did not ‘win the battle’ because of superior medical knowledge; the GP simply had more power, and chose to exercise it.

Healthcare professionals who were reluctant to trust patients' expertise in daily management could also cause difficulties. For example, one participant told of being sent to hospital when her blood glucose happened to be high because of an infection (something she had been taught to self-manage at home using DAFNE principles): I don't go to my GP for anything to do with my diabetes, because they mainly deal with Type 2 diabetics. […My GP] sent me to hospital when I had my blood sugar… I went in to see him about something and my blood sugar was 18, which was not unusual. And he called an ambulance and I said to him he was being O.T.T., because not many Type 2 diabetics would go to A&E. Interviewer: Did he listen or did he still call the ambulance? He listened, but he still called the ambulance. Interviewer: And then what happened? Well I was in hospital for two days! […] And then I had trouble getting out of hospital, because I didn't meet the criteria and I'm saying to them ‘please, just let me go home, this is unnatural, you know, I'm stuck in bed, my blood sugars aren't coming down because I'm stressed, I've got an infection, it's no good putting me on…’ you know, because I was on a sliding scale, I said ‘you don't understand, you don't understand, you don't understand…’ Mary, DAFNE graduate, talking nine years post-course

Although the GP and hospital staff meant well, they had failed to appreciate not just the emotional but also the physical impact on the patient of their actions. Mary gave her account with great emphasis. She described her unnecessary hospitalisation and subsequent events as ‘frightening’ because of the lack of power she was allowed over her own body; she could only watch her blood sugar rise needlessly without being able to use her own skills and expertise to keep herself safe. During the experience of being put on a ‘sliding scale’ (intravenous insulin and glucose administered in hospital), the patient completely loses control over his or her diabetes, surrendering management to hospital staff who are unlikely to be diabetes specialists. The National Diabetes Inpatient Audit has shown that in more than a third of cases this results in medication errors, which can lead to coma and occasionally death.22