How can we improve diabetes care?

Response to Helen Hopkinson’s article in the British Journal of Diabetes:

The article recently published in the British Journal of Diabetics calls for a national, centralised system which manages type 1 diabetes care in Scotland. It should follow the example set by charities creating a clear strategy which offers gold standard care to everyone with type 1 diabetes, both the newly diagnosed and the long term diabetics.

The article calls for a clear pathway which should heavily involve the DAFNE programme. DAFNE provides “the skills required from the start include carbohydrate counting for prandial insulin adjustment as part of a free diet; basal insulin adjustment; and strategies for sport, illness, exertion, drugs, sex and alcohol.” DAFNE also receives very positive feedback from patients: “After years of diabetes, people who undertake DAFNE training state that their life would have been so much easier if they had been shown how to use insulin this way from the start.”

I am one of those patients. I was diagnosed at 12 years of age and completed DAFNE when I was 21. I thought I knew everything I needed to know about diabetes before DAFNE, and now I can’t believe how I actually survived without it. Actually, I do know how I survived, a constant blood glucose reading in the low teens to avoid hypos and avoid DKAs coupled with a constant tiredness and potential long term damage to my body.

Three main problems are highlighted in the article which need to be solved. First, the newly diagnosed should receive care following a clear pathway from day 1. Second, those who are long term diagnosed with poor control should be offered courses which prepare them for DAFNE and ultimately offered DAFNE. Third, those who are long term diagnosed and well informed about their diabetes should be offered refresher courses to update and maintain skills learnt.

I agree, these problems should be solved and more resources are required to do so. To secure the resources necessary to do so, the power of patients to enact change are mentioned. “The experience of a patient asking to move to another clinic or a direct question from a patient wanting to know why she can’t access the training that her neighbour has been offered are far more powerful drivers of change than peer persuasion or another business planning meeting.” However, I believe a more fundamental change has to happen before patients will become more involved in demanding change. I think we, patients, go into the Diabetes Clinic with a naivety which discourages us from challenging the doctor’s recommendations. We naively assume what the doctor tells us is the gold standard. If anything better exists, they’d tell us about it.

I say this as a naive patient. I received DAFNE training without asking for it. I was suitable for DAFNE and the doctor recommended it, there was a waiting list so I was placed on the waiting list and I eventually completed DAFNE. Before the doctor told me about DAFNE, I didn’t know it existed. How can I demand access to a programme I know nothing about? Before going on DAFNE, I wasn’t even sure it would help. Why would I demand access to something I’m not even sure is worthwhile? And the same happened with my insulin pump. I was lucky enough to be offered a pump because I fit the profile and additional resources were made available in Scotland in 2014. I knew the pump existed but assumed the NHS doesn’t provide them to anyone unless things are really bad. The only thing I knew about the insulin pump was that my friend’s sister (who I never met) had one and she said “it changed her life.” I had no idea I was eligible for a pump until the doctor mentioned it to me. Why was it never mentioned sooner if it was the gold standard or care? And why did I have to wait 9 years as a diabetic to receive any formal education about diabetes?

I think there are two reasons. First, I was niave and uninterested. I assumed I was receiving the best care available and to be honest, diabetes was enough of a burden to live with, I didn’t want to spend my spare time searching the internet about alternative treatments Americans are conjuring. Second, and most important, I think there is a conflicts of interest for the doctor and that is why we patients don’t hear always hear about what is best for us.

The conflict of interest exists for the doctor because they provide information to the patient about the gold standard care and they have to make decisions about the allocation of resources – who gets DAFNE? Who gets an insulin pump? What this means is that the doctor isn’t going to tell everyone about DAFNE or an insulin pump if they are not available. What sense would it make for a doctor to tell me how DAFNE would be great, it would help me manage my diabetes, it would improve my quality of life but it is not available yet? Or how an insulin pump could help with hypos and exercise but you have to buy one yourself (£2,300 plus £1,500 per year on consumables) because we can’t give you one.

The conflict of interest is there because the doctor has to worry about whether or not the resources are available. If there is a centralised system which provides diabetes care to Scotland (including DAFNE, other courses, and insulin pumps), the doctor no longer needs to worry about availability. They can refer each patient they feel fits the profile for certain services. The doctor and patient can write a joint application to apply for whatever is best for the patient. And then it is up to the new independent, centralised system to allocate the resources. The doctor’s conflict of interest is removed as they can focus solely on the patient’s wellbeing.

And this is where patients can become involved. If I have been told by my doctor I should complete DAFNE, work on a joint application to be told I can do DAFNE but I have to go to another city or I have to wait a couple of years, I will be upset. I will be more likely to contact the NHS, or my local MP or MSP. I might start a Facebook group or an online petition and realise there are a thousand other people with diabetes in a similar boat. And this is how change happens.

I am not qualified to decide what the gold standard care pathway should be. But I am a health economist (which deals with decision making in health care, rationing of services, and conflicts of interest) and I think incentives are paramount. I think an independent centralised system for diabetes care may create new incentives which enable a higher level of patient awareness and involvement igniting an appetite for change and bring people with type 1 diabetes together. I wouldn’t say type 1 diabetics are a displaced population as I find support is always available when asked for, but I think it is a fragmented one where you only hear about alternative treatments if you’re lucky enough to have a neighbour who also has type 1 diabetes.