Tuesday 29 November 2016

With a Little Help from my Friends

The reason for the title of this post will become apparent when you have read it. I am always very reluctant to use my blog or social media to be negative and critical, but I feel the need to pass comment on a matter which has already attracted much comment elsewhere. Diabetes Care.

I won’t bore readers who already know me with chapter and verse on my Diabetes story – it is in this post if you don’t know it. Suffice it to say that I have been most fortunate, in that I have lived for almost 19 years with Type One with minimal complications, good health and no significant impact upon my life and work. All I would say is that this is thanks in no small part to my own efforts, the care and concern of my immediate family, and in practical terms, the input of the health care professionals with whom I have dealt on a regular basis. Diabetes is hard work, all day, every day.

Six years ago, as a result of my consistently unproblematic condition, it was suggested to me by my hospital clinic that I should be discharged to the care of my GP practice. At the time, this was a welcome and appealing suggestion, which I willingly accepted. I had always found the six monthly clinics a nuisance rather than any help: I had to take an afternoon off work, which for a teacher means setting work for classes, travel to a crowded hospital with (at the time) appalling car parking problems, then sit for ages in a stuffy waiting room between various stages of a ponderous and inefficient process (one room for weight and height, one room for a BG tests, one room for seeing the doctor, another if necessary for seeing the nurses.) I always had a brief and frankly unnecessary chat with a consultant, who congratulated me on how well I was doing, exchanged a bit of small talk and sent me on my way. All very nice, but of no clinical value if the truth be told. The most meaningful and useful input was from the hard-pressed nurses, who scuttled from room to room, stopping to chat in the waiting area to check if I was OK for pens, was my meter OK etc.

The prospect of replacing all this with a convenient appointment at my local GP, ten minutes’ walk from home, was most attractive, and I took it. So for six years, I had this annual review, essentially just a standard GP appointment, but with a doctor who is designated a diabetes specialist in the context of the practice. I still had my twice yearly HBa1c test, annual retinopathy check, foot check and all the right questions from the doctor, so I was happy, and continued to have “good” control and a good HBa1c result (albeit creeping slightly upwards into the 8’s)

Then came the GBDOC. Again, no need to repeat the story – it’s here. But the GBDOC meant that I started to be able to “compare notes” on diabetes care with others. First of all online, then face-to-face with some, as I became more involved with the community. I was becoming more interested in my diabetes, not least with my children grown up and independent and my work life reducing to part-time semi-retirement. I started to realise that I was perhaps being short-changed on my care compared to others, and that perhaps I now knew more about diabetes than the experts who were caring for me. This suspicion was increased when in October 2015, after 6 months’ use of the FreeStyle Libre (which, needless to say, I had discovered via the GBDOC!), I presented at the GP practice with a sudden fall in HBa1c at my annual review. A clearly impressed doctor asked if I had been “doing things any differently”, and when I mentioned the clever little device that was enabling me to react to and control BG levels so effectively, he was stumped. He’d never heard of what many believe to be one of the most significant advances in diabetes management technology, and earnestly made a note of the name of the device. Fair enough, I thought. He’s a busy GP, not a consultant. And a nice guy, manifestly caring and conscientious.

I decided that it was time to see whether the hospital knew any better, so I ‘phoned the helpline to the nurses which I had been given back in 1997 and had never used. I also wanted to ask about a DAFNE course as a way of adding to my growing expertise in diabetes management. The helpline operates from 11-12 daily, is on voicemail until 10:59 and after 12:01 and engaged for the rest of the time. Have they heard of email? After repeated re-dialling, I got through, only to be told that as I was no longer a patient of theirs, I was ineligible for the DAFNE courses at their hospital, and whilst they could advise me over the phone in response to another query, namely about getting a new injection pen, they were really doing me a favour. I thanked them courteously and resolved to get referred back to the hospital.

And so it came to pass that yesterday, Monday 28th November, I went on a sentimental journey back to the clinic I had attended for all those years. Some things have improved: there’s a smart new multi-storey car park, with modest charges and loads of spaces. The hospital entrance has been rebuilt and extended, and feels like a provincial airport or a railway station, with well-designed waiting areas, big-screen TVs everywhere, and branches of Costa, WH Smith and M&S Simply Food. I actually knew of these changes, as I had been to the hospital for other reasons (most recently visiting a pupil newly diagnosed with diabetes as it happens!), but even the clinic had moved on….a bit. There was an automated check-in system, which worked. Someone had realised that it makes sense to do weighing, measuring, handing over the urine sample and testing BG all in one room with two people, rather than three rooms with three people. So far, so good. And having done all that, I was seen within 15 minutes of arrival, and starting to feel I had made a good decision.

But then I went in to see the doctor. A consultant, I presume, although not the named person on the appointment. No sign of #hellomynameis. He was a pleasant, courteous man, but he just asked how I was, waited 5 minutes for a screen full of data to appear, and told me what I already knew from my recent GP review, that I had “excellent” control, and enquired about how I managed my diabetes.  I told him that I had started using the FreeStyle Libre 18 months previously and proffered my tablet screen full of Libre data. He looked blank, then startled. He had clearly never heard of it. I repeat, a diabetes specialist in a large teaching hospital at a clinic had not heard of a device which has been the subject of worldwide interest and is widely thought to be a big step forward in diabetes management. His response suggested that I was extolling the virtues of some quack herbal remedy: he showed no interest in my screens full of data, didn’t ask to see the scanner or the sensor, and clearly wanted the conversation to end, and to move me on to the nurse who would discuss my request for a DAFNE course.

Fortunately, my time was not wasted. The nurse had heard of the Libre, readily agreed to refer me for DAFNE and agreed that as I now had so much data about the minute-to-minute progression of my BG, it made sense to try fully to understand the impact of different foods on levels.

I returned home mildly amused rather than annoyed, to be told by my daughter that there was a voicemail for me on the landline. It was the hospital doctor I had seen about an hour previously, asking me to phone back, giving a bleep number and saying “there was something he needed to talk to me about” but that I had already left the clinic. Yes I had left the clinic, because he and the nurse had told me to.

I was mildly concerned, my wife panic-stricken. A phone message from a doctor asking me to call back and bleep him, less than an hour after I had seen him. Surely a sign that something was amiss. What hideous complication had reared its head that needed such an urgent response? I needn’t have worried. He just wanted to know if I ever suffered from any hypos, if I tested before driving, if I had had retinopathy screening and a foot check in the past year.

Yes, I do have hypos, it’s what happens when you have diabetes, but fortunately I know the signs and deal with them. Yes, I do test before driving, it’s the law. (as well as testing 20+ times a day with this mysterious new gadget). Yes, I have just had retinopathy screening and a foot check – it should be on my records. And that was it. He had clearly forgotten some of the script, and needed to call me to get the answers rather than risk being accused of negligence. I put the phone down and reassured Mrs L that I was not suffering from some hideous life-threatening condition which had shown up as a result of a finger prick blood test and a sample of wee.

So there you go. My journey from hospital care to GP care and back to hospital care. I think I’ll continue to rely on the GBDOC for advice and information. There are several doctors there, including consultants, who are happy to tweet and interact with patients who aren’t even theirs. And there are hundreds of people with diabetes just a tweet away, all with their own experience and expertise, all of whom are there to help. In fact, I’ll just get by With a Little Help From My Friends

Oh, and I look forward to meeting DAFNE next year.

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