When will I see you again? - Diabetes care and the Pandemic

Six months and counting..... 

As we popped our Prosecco corks with the clock striking midnight last New Year’s Eve, none of us had any idea what 2020 had in store for us. We have now lived for half a year in a period of unprecedented collective anxiety for all but the diminishing number who remember the severe privations and genuine suffering of the Second World War. Our world as summer turns to autumn looks and feels shockingly different to that of last winter. The list of new words and concepts with which we have become familiar is lengthy, and we have all become accustomed to routines, behaviours and attitudes which would have seemed utterly alien to us on New Year’s Day 2020. 

What would I have thought of this selfie back in January?

Tens of thousands have died in the UK alone, and many, many more have suffered, either from the effects of the Covid-19 Virus itself or from secondary consequences such as delayed diagnosis, postponed or cancelled treatments and indeed subtle longer term psycho-social difficulties yet to be fully recognised or understood. 

It’s not exactly been the jolliest year of our lives, and as we enter autumn here in the UK, with the Virus better understood and to an extent better controlled than it was earlier in the year, we are nevertheless facing questions, anxieties and uncertainties well into the future. A life of carefree interaction with our fellow human beings seem a distant memory and an even more distant future prospect. 

For those of us living with other medical conditions like diabetes, there have been well-publicised extra layers of uncertainty, and I for one have found myself more concerned about my own welfare, more careful about my own actions and choices than at any time since my diagnosis almost 23 years ago. In many ways, we who live with diabetes have been very well-served: there has been wonderful support from healthcare professionals in the online diabetes community, who have transferred their habitual enthusiasm and energy to online versions of their normal activities; the diabetes charities have been excellent sources of information and encouragement, despite suffering from significant loss of income and of course the patient community has displayed mutual supportiveness and information-sharing as always. I have been thankful for the online connectivity which we now take for granted, and contacts made through the world of diabetes have been a source of friendship throughout these difficult months, for which I am enormously grateful. 

Before we feel too sorry for ourselves, it is worth pondering what a lockdown of similar extent and severity would have been like in the pre-internet days of the not-too-distant past: no WhatsApp groups, no video calls, no instant online sharing of information, memes and funny videos, no working from home, no remote learning. Even twenty years ago, that would have been the reality of a similar scale pandemic and lockdown. 

If nothing else, surely one of the positives of the pandemic will be to convince even the most grumpy luddites that the information age is an overwhelmingly good thing, and that smartphones, tablets and laptops are a modern-day blessing, a miraculous tool for social interaction and information sharing, whose obvious faults and disadvantages are not the fault of the medium itself, but rather of the human imperfections or evils of those who use them. 

I have taken great delight during the pandemic in chatting over the garden fence with my octogenarian next-door neighbour about stuff he has found on the internet, or how much he appreciated an online video consultation with his doctor. He recently told me that he had bought a Bluetooth speaker and had googled the origins of the word Bluetooth (a 10th Century Scandinavian King in case you’re wondering). I was also delighted to receive a Facebook friend request from another octogenarian neighbour who had signed up and stumbled across me on a neighbourhood group. I really hope that the pandemic will hasten the demise of the “digital divide”, not just in terms of the older generation but also in terms of those afflicted by poverty and deprivation. 

So the pandemic has certainly taught us to value the internet. 

Now I am an irrepressible optimist. It annoys those close to me at times, but I often genuinely find doom and gloom about stuff a greater burden than the stuff itself. And this is definitely true of the pandemic. I have become far more annoyed and frustrated about the epidemic of opinion from self-appointed experts than with the disease itself. So doom and gloom is not for me, and I am already starting to look for the good that can come out of this pandemic. It’s not easy, but that shouldn’t stop us all trying: I was moved to write this post having filled in a survey for Diabetes UK about my experience of diabetes care during the pandemic. 

Here’s the link if you haven’t seen it – a short and easy survey:

https://t.co/0z17jYg22v 

I must say that filling it in made me somewhat frustrated, not least because a few weeks ago I had attempted to get some information from my hospital concerning their plans for re-scheduling clinic appointments (my last was in early December), and I received a rather vague reply indicating that I was on a list for a re-scheduled appointment “in due course”. A follow-up enquiry about the potential use of video or telephone consultation was deflected in the classic bureaucratic manner “We are also looking into the option of using video consultation within our service however plans have not yet been finalised”, whilst my suggestion that they might consider using LibreView to share my data was ignored in a manner which suggested that I was proposing something truly subversive and revolutionary. 

Surely, diabetes care is a prime case for the rapid adoption of new ways of communicating and sharing that we have all taken on over the past six months. For a diabetes patient such as me, fortunate at the moment to be living well with Type One, a six monthly face-to-face at the hospital as well as an annual review with my GP is an unnecessary burden on the system, and arguably upon me. A five minute appointment with a phlebotomist at my GP could yield my HbA1c result, and, together with a look at my LibreView data, would form the basis of a discussion which could surely be just as effective remotely as it is in a hospital ten miles from my home. 

Now of course, there are multiple caveats. My own condition is, for now, good, but might not always be so, and there are aspects that cannot happen remotely. Nobody can check my feet, my injection sites, my eyes, and in many ways most importantly, my emotional welfare, over the phone or through a shadowy face on a screen. Some sort of triage could surely be applied to people with diabetes, such that those in most need would be seen face to face, whilst others would be seen remotely. And I am not proposing online only consultations: if we are seen six monthly, then surely an annual face-to-face, with an interim online in between, makes perfect sense. 

Above all, we must NEVER, in healthcare or elsewhere, allow on-screen interactions to replace face-to-face ones. Zoom, Facetime, Skype, WhatsApp or whatever are wonderful, but nothing can get near to replicating the multiple subtleties of human interaction: badly-lit faces in front of a bookshelf cannot convey body language, subtly raised eyebrows, non-verbal reactions, fear, anxiety, reluctant agreement, embarrassment. We are beautifully subtle creatures who thrive on our interactions with each other, and the human physiognomy is a truly wonderful and subtle thing. I for one am longing for a world in which I can once again see people in the real world, out from behind their masks and visors, or out from behind their webcams. I am very glad that I am retired from teaching, as I would have hated to teach from behind a mask, or to teach young people whose faces, whose reactions and responses are hidden by a piece of cloth. 

So please let’s try to take the best of what we have had to get used to during the pandemic, but also be sure to discard the worst as soon as it is safe to do so. I’ve had more than enough of zoom calls already. 

A Zoom Meeting of Diabuddies from across Europe and beyond

My enduring emotion is that of the Three Degrees song which forms the title of this post, and is a plea which applies to my healthcare team, just as much as to the many friends and acquaintances whom I am missing so much: When will I see you again?

Couldn't Get it Right

This is difficult. I am well aware that every job is a good deal harder and more complex than it looks, and that it is the easiest thing in the world to criticise, so I offer these thoughts as, I hope, due praise, together with suggestions and observations as to how things could perhaps be differently expressed. 

A routine hospital clinic review has left me with a 1976 earworm from my diabetes playlist which expresses perfectly my thoughts: Couldn't Get it Right by the Climax Blues Band.

Today was my second clinic review since I returned to hospital care last year. My first review, back in November, left a lot to be desired, and I wrote about it at the time – here.

Today's visit went better in many respects. For a start, the administration was exemplary and the waiting time minimal. I received a courteous reminder phone call, at 7:30pm, three days before the appointment, with the caller apologetic for disturbing me but explaining that missed appointments are common and costly. Fair enough.

Checking in at the hospital was on a touchscreen and I had been sitting less than a minute when I was called for weighing, blood test, blood pressure and “taking the piss”. Another minute's sitting down and I was called in, about a minute before the appointment time.

At my clinic we do not have designated consultants and DSNs, so it appears to be pot luck whom we get to see. The woman I saw greeted me, gave her name and proceeded to give me more time and attention than I have ever had before. She was thorough and attentive, and my take-home message in factual terms was an HbA1c of 6.4. So I should be celebrating.

But I was left feeling, well, mildly amused and even slightly angry, largely because of some rather careless language and an unnecessarily stern tone on the part of the consultant.

She asked to see my meter in a rather brusque tone, and seemed surprised and mildly disapproving when I proffered my FreeStyle Libre, explaining that this was where the vast majority of my data could be found. She took it from me in a manner reminiscent of a teacher confiscating a mobile, then fumbled through the display in a manner reminiscent of an aged aunt with a smartphone. She was clearly less than familiar with a device which has in recent years been widely recognised as a quantum leap in blood glucose monitoring, an impression strengthened by her asking how long I wear the sensor for (it is well known that the sensors last precisely 14 days). I sensed suspicion rather than interest.

She was commendably thorough in her questioning, albeit a little bureaucratic and interrogatory in manner. I was particularly amused by one choice of question: “What other medical conditions do you have?” “None!” Her raised eyebrow suggested disbelief, and surely a better phrasing would be “Do you have any other conditions?” Words are powerful and subtle things, and the phrasing of a question should be thought through. Especially if it's a routine question, presumably used at every such appointment. I felt guilty for being so well.

Scrolling through my data, she appeared to be looking for lows, and enquired rather accusingly “what was wrong here?” on seeing a solitary “LO”. I explained that nothing was wrong, pointing out that it was at 5:30 pm on a day when I had been working hard in the garden, that it was preceded (on the Libre) by a 4.9 with a down arrow and followed, 30 minutes later, by an 8.4 with an up arrow, indicating that I had anticipated and acted upon the “LO”. Her manner suggested she was unconvinced.

Then came the punchline: my HbA1c, she said, was “too good” at 46 (6.4). It was at a level where I was at increased risk of hypos (self-evident in a way?), and she asked if I suffered from hypos. Yes, I do, I replied, but I am normally able to anticipate them and deal with them, not least because of the Libre. Fair enough, she said, but if it went any lower "we would need to lower your insulin dose”. Bad phrasing again. I'm not a child – it is I who would modify the dose.

By this point, I was starting to sense some rather rigid thinking: “lowering my dose” suggests a constant dose, unadjusted for meal content, portion size, activity level, temperature etc. I vary it according to what I'm eating and doing. I don't have a "dose". It's not medication.

To finish with, she said she thought I didn't need a DAFNE course. I was clearly doing very well without one. I told her that I've never been taught carb counting, I just guesstimate, and she replied that I must be very good at it. So again, I am being penalised for doing too well.

So there you go. A pleasing HbA1c result, great to hear as I approach my 20th diaversary and 60th birthday, but somehow it seems that they're never satisfied. 

To paraphrase Abba, “I feel like I lose when I win”

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 28^th 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.