Team meeting and Festival

Festival campsite, August 2018

At work we had a team meeting for the Diabetes Dietitians where the Dietetic Manager came to tell us all about the Outpatient Project that she's in charge of implementing. I like the DM a lot - for example she introduced patients Bob, Bobina and Bobetta to illustrate various points. Anyway, this Outpatient Project involves reviewing and re-classifying every one of our many outpatient clinics in order to be able to assess our capacity and understand exactly who we are seeing, how long they wait for an appointment, how long their appointments are, how many times we see them, what we do if they don't attend, and much more. There are a few niggles that still need sorting out which are a bit too technical and boring to describe here.

The rest of the meeting without the DM was just as complicated, as our new Team Leader tries very hard to understand how things have ended up as they have, and impose some sort of discipline and order onto the amorphous mess. It is even possible, if she is tenacious enough, that she may get to the bottom of the conundrum about how my post is funded and how exactly I should handle various complex administrative situations. Again, too technical and boring to go into here.

The day before the meeting, as is traditional, I checked the previous meeting's minutes to see if I had been given anything to do. I noticed that I had been asked to find out whether the doctors where I work have any official referral criteria to describe who they will and won't see. I asked the most amenable of the four doctors who work here, and he said that he didn't, but if he were to write some then his guidance to GPs would be "No stupid referrals." When pressed, he elaborated that a referred patient should have diabetes, and that the GP should have done something about it before referring them. Good enough for me. I wasn't asked for this information at the meeting, thankfully.

Then came the Bank Holiday weekend in which I went to the Shrewsbury Folk Festival. This was my second year there, and I have to admit it wasn't as good as the first, but that was down to a) the wet and windy weather, b) no Oysterband this year, and c) my failure to pack any bedding. After I'd arrived and put up the tent I realised that I'd brought no sleep mat, sleeping bag or duvet. So I went home again and fetched them.

This ruined my plan for a lazy Friday to include a walk into Shrewsbury for lunch at the sushi place I found last year, but actually only postponed the plan until Saturday, when the weather was fairly nice. The rain came with a vengeance on Sunday, but with a watertight tent and all the sound stages under cover it wasn't much of a problem. Highlights this year were all the female singers - The Fitzgeralds, Gretchen Peters, Edwina Hayes, Miranda Sykes with Show of Hands and Maddy Prior with Steeleye Span. What voices they have! I was too tired to see the end of the Steeleye Span set, but lying down in my tent I could hear the strains of the classic "All Around My Hat" with full audience participation.

Back home after the festival weekend and Ilf arrived at his usual crack of dawn next day to make a start on the decoration of the Screening Room. There is still no sign of a screen for the screening room - my TV woes continue, and the second scheduled delivery of a replacement television was also cancelled by the selling company. They refused to speak on the phone and were only willing to converse by email, so I lost confidence in them, withdrew my order and am now awaiting my full refund. Shortly afterwards I set up a profile on the Shpock platform with a view to selling the old sofabed mattress, but then on a whim I bought a temporary replacement TV for £20 so at least I can watch DVDs. When I have the strength, I will go back to the large TV project. And sell the mattress.

On the subject of selling, regular readers may remember that I was all enthusiastic after checking out my local car boot sale. You may also have noticed that the summer is over and I haven't done anything more about it.

Morris Dancers in Shrewsbury - and no, I have no idea why

Life goes on

Adhisthana, June 2018

Terrible news last week - a cousin aged only 48 living in Texas died from a stroke. The last time I met him must have been at least 20 years ago when he was living in Manchester, but Facebook is a marvellous thing and it was clear over the intervening years that he was an active, interesting, funny guy devoted to his wife and two children. It makes you think. It has certainly made me think about the things that I want to change sooner rather than later.

Despite this awful news the following weekend was one of the best for me, starting with a new Japanese cafe just up the road from Lola II and Mr M, followed by supervising them putting up their new tent, which is the same as my tent but a little bit better because it has an extra canopy section. Then I went into London to meet another set of friends and go to a show: The Book of Mormon, which is an irreverent and funny musical which pokes fun at Mormons and Africans alike, without becoming spiteful or particularly critical either. I found it amusing and reassuring that waiting for us outside the theatre after the performance were some real Mormons, taking advantage of a recruitment opportunity rather than protesting about blasphemy. A religion with a sense of humour is fine with me.

After a walk around The Green Park and a peek at Buckingham Palace we headed off to a fancy shmancy Japanese restaurant in St James's, which served wonderful food (the best tempura I've ever had and a very fine cherry panna cotta) but indifferent, if not incompetent service. There were cocktails to follow and much relaxation next morning before I travelled to the Chelsea Physick Garden for a birthday lunch with sister D and family.

The subsequent week at work and at home has been indifferent, marked by the failure to deliver my new TV, disc golf and a pub lunch with the badmintonians, and the arrival and installation of a new washing machine. I will miss that launderette. Good news on the BMI - I'm nearly there, just 200g to go. Then there's the much harder task of maintaining the weight loss.

First world problems

I do love poppies. Here's an orange and purple one.

We finally had some rain - thunderous, torrential rain - but very short lived. I was enjoying a brief respite from the oppressive heat in the new kitchen, where I spend much of my time these days, when the rain started - indoors, under the new roof light. A bucket was deployed, a text message sent to Ulf the builder, and the following day Doors and Windows Ulf attended in my absence and left me a written account of the issue. His view is that conditions were abnormal and the strong wind forced rain to travel upwards and under the cap; he has added some sealant or other such obstacle to prevent it happening again.

What I was doing when the indoor precipitation occurred was in relation to my television, which you may remember was purchased in April. Since then I had required support from the manufacturer, which runs a highly effective telephone support service, and which had repaired my TV remotely over the Internet three times - the third requiring me to install a software update from a USB stick that was sent through the post. Each of those three times the problem had been fixed, but I did query at what point would it be regarded as unacceptable for me to be phoning the helpline every time I wished to watch TV? I got no joy from the manufacturer - it was more than 28 days since the purchase, they wouldn't consider replacing it while they continued to fix it.

One Friday, however, I was watching a program on BBC iPlayer, and it just switched itself off and refused to turn on again. This time the support line couldn't help via remote control, but diagnosed a cable failure and proposed sending me a new cable through the post. At this point I got back in touch with the retailer, described my experience, and they acknowledged that it was time to offer me a replacement TV. Except that the TV I originally bought is no longer sold, so I would have to choose a comparable one. Off I went to the shop on Saturday morning, followed by more time on the website, and found that there was no comparable TV within the parameters that were set. I had another discussion with the retailer.

This left me with the option to take a lower specification television which cost the same as I paid, or a comparable specification television for £380 more, of which they would contribute £130. I did a bit of online scouting about, and found that I could get an ex-display model of the exact same TV as I had originally bought, for £200 less than I paid, but from an unfamiliar retailer. The only thing to do was to consult various people (step up Lola II, Mr M and the Decision Assistance Helpline - 'Your difficulties are our business') and also seek advice from the iPod of Fortune.

Need a decision handled with precision? Don't make a fuss, just call us! 

They all gave very good advice except IoF which seemed to have become confused with a different conversation we were simultaneously having about a trip to Israel (IoF's advice was 'Jerusalem').

On Thursday, then, I started by phoning the unfamiliar retailer to see if they really exist, answer the phone etc. Their website had a real location and phone number and I couldn't find any obvious scam opportunities, and although they only answer the phone betwen 11am and 4pm they confirmed the availability of the stock showing on their website. So I plucked up the courage to phone the original retailer again, who confirmed that they couldn't improve on their offer. We agreed on a refund. I went straight back to the unfamiliar retailer's website to order the TV I wanted, at which point I discovered a) although that morning there appeared to be four in stock none was now available, b) actually, all the televisions on their website had disappeared and b) they have a lunch break between 1 and 2pm when they also don't answer the phone.

This is where a spot of meditation can come in quite handy. Phoning back after 2pm I discovered that the website was being updated and the television section should be back tomorrow. The person on the phone couldn't tell me anything specifically about the availability of the item I was after. So I spent an uneasy evening trying not to think about it.

Next morning, as described, the website was back, televisions were still in stock, and... the price had been reduced by another £100! So I ordered one. And waited. And no email came, and at the weekend I tried to log into my account to see the progress of the order, and it didn't recognise my email address. One step forward, one step back. On Monday I phoned them again, and I had indeed made a stupid mistake with my email address, so we corrected that and we are now discussing delivery - they won't even guarantee a day, let alone a time.

I'm spending the difference in price on a washing machine. I've even ordered it at last. I'm hoping that this will be the end of my first world consumer issues for the time being.

BMI update - as predicted, the two weeks of holidays sent my weight drifting up a little bit (but nowhere near previous levels), and then I managed to get it going back in the right direction. Latest BMI is 23.9 kg/m². Back on track. I can't remember what dark chocolate tastes like any more. The next challenge will be to decide exactly how much to relax the regime, assuming I reach my target. At the moment I am certain that I will go back to semi-skimmed milk instead of skimmed, but no idea about anything else that I am currently denying myself.

What I've been reading

Master Georgie
by Beryl Bainbridge

"When Master Georgie - George Hardy, surgeon and photographer - sets off from the cold squalor of Victorian Liverpool for the heat and glitter of the Bosphorus to offer his services in the Crimea, there straggles behind him a small caravan of devoted followers; Myrtle, his adoring adoptive sister; lapsed geologist Dr Potter; and photographer's assistant and sometime fire-eater Pompey Jones, all of them driven onwards through a rising tide of death and disease by a shared and mysterious guilt."

This is the first Beryl Bainbridge I've read, and it's a lot better than most of the 'classic' books on my list. Quite short, a bit odd, it follows a group of people all connected by family or events, describing life in Liverpool and the Crimea with six vignettes set between 1846 and 1854. Enough to encourage me to try another of hers in future.

Golden Hill
by Francis Spufford

"One rainy evening in November, a handsome young stranger fresh off the boat in New York pitches up at a counting-house door in Golden Hill Street: this is Mr. Smith, amiable, charming, yet strangely determined to keep suspicion simmering. For in his pocket, he has what seems to be an order for a thousand pounds, a huge amount, and he won't explain why, or where he comes from, or what he can be planning to do in the colonies that requires so much money."

I borrowed this book on the recommendation of the friends who were with me at the festival. I read it within the weekend, and it's wonderful. Such a relief to find a good book written within the last few years. They (the friends) told me that they usually buy The Economist magazine's books of the year, and this is one of them.

The Secret Adversary
by Agatha Christie

narrated by B. J. Harrison

"Tommy and Tuppence, two young people short of money and restless for excitement, embark on a daring business scheme. Their advertisement says they are ‘willing to do anything, go anywhere’. But their first assignment, for the sinister Mr Whittington, plunges them into more danger than they ever imagined."

One of her earlier efforts I believe, and utterly unrealistic when viewed through the lens of the 21st century when well-meaning amateur sleuths are unlikely to get approval from government mandarins to track down murderous traitors. Our happy-go-lucky heroes also emerge from significant periods of imprisonment by the bad guys with their financial resources intact, ready to hop into a cab or a train at a moment's notice. Small gripes, I admit, but distracting. Perhaps you didn't need any cash in those days, just a plummy accent and a convincing manner.

Gravity's Rainbow
by Thomas Pynchon

"Set in Europe at the end of WWII, the novel's central characters race each other through a treasure hunt of false clues, disguises, distractions, horrific plots and comic counterplots to arrive at the formula which will launch the Super Rocket."

Reader, I couldn't do it. It was too difficult, with all the tens of characters introduced without any context, no points of reference, no narrative path to follow, and no discernible plot. I got halfway through and realised that I'd have to put in the same amount of effort for the whole of the second half, and it wasn't worth it. I should have known when I read somewhere that it was comparable with literary masterpieces Moby Dick (couldn't finish it) and Ulysses (not even going to start).

Mrs Dalloway
by Virginia Woolf

narrated by Juliet Stevenson

"A June day in the life of Clarissa Dalloway –a day that is taken up with running minor errands in preparation for a party and that is punctuated, toward the end, by the suicide of a young man she has never met."

There are many, many people, mostly women that I'm aware of, who cite Virginia Woolf as one of the leading forces in their lives. It doesn't look like I'm going to be one of them. I'm pretty sure I read The Lighthouse a long time ago and thought it was OK - same with this one. It's not bad, and Juliet Stevenson is a fine narrator, but I won't be bothering with VW any more.

Closed loop insulin delivery

Interesting tandem cyclists on their Grand Tour, July 2018

In the world of Type 1 diabetes, the holy grail (apart from a cure) is the 'artificial pancreas' - a way to control blood glucose levels so that they resemble as closely as possible those of a non-diabetic person. There are a few barriers, however. One is the subcutaneous delivery of insulin analogue into the peripheral circulation rather than endogenous secretion of insulin from the pancreas directly into the blood vessel serving the liver. Another is the role played by other pancreatic endocrine hormones, principally glucagon, which may or may not be affected by autoimmune beta cell destruction. The third is the minute by minute nature of physiological insulin and glucagon adjustment, which cannot reasonably be replicated by a human being.

The best case scenario which is licensed and available to a person with diabetes (PWD) at the moment consists of a Continuous Glucose Monitoring (CGM) system linked to an insulin pump, which alerts the PWD when glucose levels are rising or falling outside certain parameters. One system available in the UK will suspend insulin delivery when low glucose levels are predicted (low glucose suspend), but the PWD is always expected to manage the situation. They still have to pay close attention to carbohydrate intake, estimating insulin for meals, drinks and snacks, taking account of any number of other factors such as weather, health, activity, location of insulin delivery site, time of day, when you last ate, what you've just done, what you're going to be doing next, and more. It's still a full time job for someone with diabetes.

The situation described in the paragraph above is known as 'open loop' - the CGM and pump provide information to the PWD who is the third party in the loop, and who must make the vast majority of the decisions on insulin delivery. If it were possible to monitor glucose levels minute by minute and automatically deliver the 'right' amount of insulin without consulting the PWD then the huge burden of continuous glucose management and insulin delivery would be lifted. The pharmaceutical companies are working on this artificial pancreas idea, which is more accurately known as 'closed loop' (because it isn't really anything like an artificial pancreas at all). There is one system (not yet available in the UK) will adjust the background insulin up and down according to the CGM results, which is the first licensed partial closed loop option.

Insulin is what keeps people with Type 1 diabetes alive, but it can also do great harm if the wrong quantity is delivered. As you can imagine, ensuring that the closed loop algorithm used by the CGM and pump combination is 100% safe (or safe within whatever boundaries are required by the licensing authorities) is a huge regulatory burden, given that this equipment cannot be restricted to sensible or intelligent people.

So there is a movement which has adopted the slogan #WeAreNotWaiting. People with programming knowledge and open source software are getting on with the job, and have produced their own unlicensed closed loop solutions using the technology that's already available. The three necessary components are a CGM system, an insulin pump, and a device to communicate with both and run the algorithm. A fourth element is cloud storage, mostly for reporting and analysis, but also for third party monitoring (a parent seeing real-time results for a child, for example).

Anyone with a modicum of technical skill and some disposable income can create a closed loop system using these components, and the results I've seen are sometimes astonishing - not quite non-diabetic blood glucose levels, but so much closer. The reason for the disposable income is obviously that being unlicensed, the total solution is not available or supported within the NHS, although the pump and the CGM system might be, and the algorithm and cloud storage are free and open source and can run on a mobile phone.

I've been trying to understand the technology for a while, and I joined a Facebook group relating to looping in the UK. There I discovered that one of our patients has set himself up with a closed loop, and I invited him to come and show us what he's been doing. He didn't respond to the invitation, but another slightly less local person did, so we arranged for him to come to the Diabetes Centre at a time convenient for the two consultants, three nurses and myself. And he did come, and so did I, and the nurses were there too, but neither of the consultants turned up.

Our guest was extremely helpful, and brought along some examples of the different bits of kit that can be used, as well as a presentation that took us through it all.

The choice of other components depends on the type of pump, so that is where to start. Then there are options for how to run the algorithm, which can be on a bit of specialist kit (RileyLink, Linux) and/or a phone (iPhone, Android). The AndroidAPS is the one I understand best, but perhaps that's because I'm not familiar with the iPhone, Linux or the Apple watch and have no idea what RileyLink is.

There isn't usually a problem with the CGM end because almost all of them will do, it's just a question of budget and availability - all the Dexcom CGM systems work, as does Medtronic. The Libre needs to be adapted to turn it from 'Flash glucose monitoring' to true CGM, which can be done using one of three devices: MiaoMiao, Blucon or LimiTTer. Our guest brought the MiaoMiao option so I've seen that, but I don't know what the other two are like.

There are some variables to consider, including three levels of glucose - minimum, maximum and target - and at least two levels of temporary basal rate, so that the algorithm can adjust its behaviour according to these parameters. The AndroidAPS option is more structured than the other two, because it guides the user through 'gates', introducing more features gradually and providing access to the next feature only when the previous step is successfully implemented.

The potential benefits of closed loop are longer times in range, fewer hypos, improved HbA1c, and less effort day-to-day required to achieve these results. The downside is the cost, the effort required to set the system up in the first place, and the possible mental strain of maintaining your unlicensed technology. Your diabetes team may have little or no knowledge of what is involved, and this may be a problem, but I hope that awareness is rising. It is very likely that a looper would be asked to sign some sort of waiver which will absolve the professional team of liability should something go wrong - these documents are being considered and consulted on in my region as I write.

Joining the 'Looped UK' Facebook group has given me a lot of information and access to UK expert and non-expert volunteers. Clearly each PWD is expected to manage their own technology, there is no commitment from the group's volunteers to provide help or support, but they can be extremely helpful in answering questions, showing how it's done and helping with the trickier aspects of the setup. 'Information days' and 'Build days' take place occasionally to help new loopers, and I'm hoping to attend one soon to find out even more.