As you may or may not know, it was World Diabetes Day on 14th November - Thursday last week. It doesn't always get a huge amount of attention here in the UK, but early on Thursday morning I saw a tweet from someone who said that while they usually spare their Facebook friends and family any boring diabetes-related shenanigans they had decided to post something to Facebook every time they interacted with their diabetes care. That sounded like a brilliant and very simple way to help raise awareness so I shamelessly stole the idea and did just the same on my personal Facebook account. I was absolutely overwhelmed by the reaction from people, pretty much all of whom know I have diabetes (I've never hidden the fact) but who had not perhaps realised the amount of day-to-day faffing about that T1D management involves.
Better late than never - here's what I posted:
10.20 14 November 2013
Today is World Diabetes Day, so I've decided to bore you all senseless with some of the diabetes-based nonsense I have to do every day.
Before breakfast I checked my blood glucose level by taking a tiny blood sample from my finger and applying it to a test trip in my meter. The result at 7.10 this morning was 5.8mmol/L. That's pretty much spot-on. So I took some insulin, waited 30-40 minutes for it to get going, then ate some toast.
It's now a few hours later and I just felt unexpectedly hungry so checked again in case that meant my breakfast dose had been a little out and my blood glucose level was now running a little low. Nope. it was 7.8mmol/L.
That's a smallish rise after breakfast but within acceptable limits. I will need to check again at lunchtime.
12.32 14 November 2013
OK. So it's Diabetes time again. I need to get ready for lunch. At breakfast and lunchtime taking my insulin about 30-40 minutes before eating helps to keep my levels in check after those meals (bizarrely I don’t usually seem to need to do this for evening meals). I've tested at 5.8mmol/L again - this means my breakfast dose worked perfectly, bringing me back to my pre-breakfast level after the 4 hour duration of the insulin has passed.
I have not eaten anything since breakfast because, to be quite honest, juggling multiple overlapping doses of insulin in a short space of time to allow for the carbohydrate in a snack is such a hassle and provides such added complexity to my day that I find I'm better off just not bothering. It’s not that I can’t eat biscuits or cake if I want to... it’s just that the pleasure of those things is offset by the guesswork and calculations involved in trying to achieve good levels day to day.
I've estimated my lunch at 45g of carbs. I need to know pretty much exactly how many carbs are in *everything* I eat so that I can calculate insulin doses correctly. Fortunately I have a helping hand as my insulin pump does the maths for me. At 12.29pm I took 4.05u of insulin. I will have to keep an eye on the time now and aim to eat around 1pm otherwise the insulin will kick-in before my food and I risk my blood glucose level dropping too low.
Today is World Diabetes Day - this is what it's like living with Type 1 diabetes.
15.32 14 November 2013
More diabetes goings-on documented as part of World Diabetes Day. Just checked my BG (now you're used to the idea I'll slip into jargon) and it was 9.9. Not a disaster, but not ideal either. I should aim to be below 9.0 after meals to avoid future 'fun and games' like blindness, heart attack, kidney failure, amputation and so on (cheery!).
I had exactly the same lunch as yesterday (this makes things easier for me as it reduces the number of variables involved in my day to day decision making). But... I also made small changes to my 'background' insulin pattern yesterday to prevent some lower levels I’ve been having recently and it seems I've overcooked it a little.
I've added an extra unit to correct the high level and have re-tweaked my afternoon pattern again for tomorrow. This is one of the main advantages to an insulin pump (which I now use instead of multiple daily injections). The degree to which you can fine tune doses offers potentially amazing accuracy of doses and delivery. The drawback, of course, is that you have to be physically attached to a small pager-sized medical device 24 hours a day... But the benefits soon far outweigh any concerns you have over 24/7 attachment.
18.11 14 November 2013
World Diabetes Day again. Evening meal is pasta. And I'm still 9.1 despite the earlier correction which is well under way. Adding extra correction to meal dose.
18.50 14 November 2013
I’ve not just tested, but I am still thinking (worrying) about how this meal dose will work out. The carbohydrate in pasta usually digests fairly slowly for me, so sometimes I use options on the pump to 'spread' the insulin delivery over a longer period. This time however I have taken all the insulin up front as I'm high to start with and the insulin will probably struggle to keep pace with the food. Of course this means I will have to keep a closer eye on things this evening, just in case my guesswork as to what might happen between the food and insulin turns out to be completely wrong and I end up worryingly high or dangerously low. Today is World Diabetes Day - this is what it's like to live with T1 diabetes.
19.40 14 November 2013
Another update (are you all bored yet?) Tested an hour and a half after eating and BG was 10.3 Now even though this is *still* too high, it is actually encouraging because it suggests only a very small rise in BG level while the initial burst of glucose from food would be expected and insulin should be active. This means there is unlikely to be any issue with the cannula (the small tube under the skin through which the insulin is delivered) and/or the pump itself. If I had not eaten anything I would probably be well on the way back down now - possibly too quickly! Another check in an hour or two should provide a better picture.
Posted as part of World Diabetes Day. Millions of people all over the world - parents, children, teenagers and pensioners - are making similar judgements today and every day.
20.27 14 November 2013
More World Diabetes Day fun and games. Well, another test reveals my BG has now risen to 12.3mmol/L. Disappointing. I'm lucky in that occasional short-lived forays into double figures/teens don't make me feel awful like they do for some people, but it does mean that I don't necessarily feel it when my BG is rising and I'm expecting it to be falling. I have to find out by testing. I still have over a unit 'active' from my meal dose, but by now I should be approaching normal levels. I've corrected again, but this time I've dosed more than I should need in order to reduce my BG more quickly and will top up with some carbs later if I need to. Yesterday's adjustment which was intended to prevent low levels seems have been a little over enthusiastic for the afternoon and evening. I will be tweaking again it seems.
21.20 14 November 2013
Another hour further on... Another test. Still up at 11.9. Sometimes 'rapid acting' insulin can seem anything but. It would be tempting to add a little more insulin into the mix, but according to my pump I still have at least 1.8u still active. Of course, the pasta I ate earlier is probably still pushing BG upward to some extent, but it's often tricky to work out quite how much of a food's BG raising potential will already have passed. Today is World Diabetes Day, and I much preferred how stable my BG levels were this morning.
22.40 14 November 2013
Today is World Diabetes Day and I've decided to post something here every time I do something diabetes-related today. I haven't given you the full picture of course... These are just the edited highlights. I've not mentioned each time I've looked to check how long it was since I did ‘x’ or ‘y’, to see whether or not I now need to consider doing something else. Since about 3.30pm my blood glucose levels have been higher than I would like. When this happens I can use insulin to bring them down into a healthy range, but I can't overdo it as the body needs a minimum amount of glucose to function properly and if I overcorrect I could easily end up hypoglycaemic (where the brain is starved of glucose and begins to malfunction).
My efforts to correct my high levels so far this evening have been less than successful. I am currently cruising at 10.5mmol/L whereas by now I was expecting to need to be eating some top up carbs. It is difficult to work out exactly what has gone wrong and where all that extra insulin has wandered off to, but having waited and tested and waited and tested all evening I've decided it's time for one last gentle nudge. I still have around 0.5 of a unit circulating from earlier but I've overridden the pump's cautious suggestion and added another 1.25u to make 1.75u in total. I would expect 1u to reduce my blood glucose level by a smidge over 3mmol/L in about 4 hours which *ought* to bring me to the mid-5s by around 2am. That's the theory anyway - if you've been sticking with this from the start you'll know it's not quite been working out as expected so far this evening for one of several hundred possible reasons. I now have to decide whether to set an overnight alarm for 2-3am to check again. Or just hope for the best and see how things are in the morning. As a halfway house I'll probably wait up another hour or so to see what happens. Fun fun fun!
23.57 14 November 2013
My last post for the day - you will doubtless be very glad of that. Just tested again and I've dropped down to 8.4 with 0.7u or so still active. That's much more promising. Not quite sure what happened, but it could simply have been a slight error in dishing out the pasta earlier. Even though the amount of pasta we cooked was carefully measured a spoonful or two too many on my plate could have easily caused that sort of havoc from a highish starting point. On the other hand it may be nothing to do with that.
Today was not a particularly tricky one - I've eaten only tried and tested foods that I seem to be able to manage more often than not... I didn't do anything particularly strenuous or energetic that might have dropped my BG... I wasn't under undue stress or illness, both of which can cause BG upheaval... But I still managed to make a bit of a hash of it levels-wise nonetheless. Even relatively ‘normal’ days can involve a mind-bending number of conflicting and combining variables to navigate around.
On the plus side at least I didn't crash from too high down to too low and back again, but it has been a fairly frustrating 'wait and see' evening.
It won't be World Diabetes Day tomorrow, but I'll still be weighing food, calculating doses and trying to work out how to keep things in some sort of balance. There are around 3 million people living with diabetes in the UK, and something like 10% of them, around 300,000 have type 1. Thanks for reading, and congratulations on all having fully functioning pancreases you lucky lot!
Posted by Mike on Monday, 18 November 2013
Posted by Mike on Sunday, 6 October 2013
INPUT out West, Truro
The event was held at the very lovely Alverton hotel close to the centre of Truro which, along with Lesley, Melissa and Laura of Input looked after us all beautifully. It was great to see HCPs and patients able to handle pumps, CGMs and other diabetes-related gadgets, with companies on hand to answer questions and provide information both to 'old hands', relatively recently diagnosed families and at least two different people who are about to start their pump journey within a matter of days. Some folks had travelled from as far afield as Cardiff and Preston to attend! It was lovely to meet up with online friends and acquaintances too, to catch up with Patti from DSF and to finally meet Angela 'Diabetes Power' Allison face to face, along with her daughter, pump user and juggler extraordinaire - Claudia.
On a personal level I was slightly disappointed about the 'no show' by Medtronic as there were a couple of questions I wanted to ask them, but that was more than made up for by interesting updates from Roche and particularly an excellent conversation with Martin Harvey of Advanced Therapeutics (Dexcom G4) and the very helpful Animas pump trainer (apologies, I didn't pick up your card!) who answered lots of my pointy questions about the Animas Vibe.
But it wasn't just about the big pump-tech companies. I was delighted to see that relatively small meter company Spirit Healthcare have launched a new 'talking' BG meter to support blind and partially sighted people with diabetes (the CareSens N Voice). Strips for CareSens meters are at the more affordable end of the spectrum for those T2s who need to 'self fund' their own blood glucose monitoring (don't get me started). The accuracy of CareSens meters appears to be excellent, and the company will happily provide the meter itself free of charge to anyone regardless of diabetes classification.
Undoubtedly one of the biggest draws of the event was the afternoon talk by Professor John Pickup, whose gentle and unassuming manner belies an extraordinary career at the forefront of diabetes technology (his work at Guy's Hospital in the 1970s pretty much earns him the title 'father of the insulin pump' and though non-diabetic he was the second person ever to inject rDNA human insulin 'just to make sure it was safe'). The talk covered all sorts of exciting developments in diabetes gadgets that are waiting in the wings, some nearer to reality/market than others. Pumps seem to be moving more towards patch and micro-pump approaches and Prof Pickup anticipates greater use of pump therapy in the treatment of T2D in coming years. Naturally the work towards a closed loop 'artificial pancreas' was covered (which was introduced with a wry smile saying that such a system was suggested to be 'just a few years away' as far back as 1972). Other interesting developments in the pipeline for CGM might involve non-invasive systems using near-infrared fluorescence and/or nano-sensor 'tattoos'. Exciting work also appears to be ongoing in the spheres of islet cell transplantation (including nano-encapsulation of the islet cells to protect them and improve the success of transplantation procedures). Stem cell research continues, but once again progress is relatively slow with some difficulty in reproducing promising results reliably.
The topic then turned from technology to future possibilities for structures and systems that provide care to people with diabetes. Opening with a bold statement that 'We know what the problems are' followed by a comprehensive list of missed targets, postcode lotteries and structural weaknesses within the existing system, Professor Pickup then laid out a sparkling vision for the future. A future of agreed standards that are met across the country (with action taken where areas struggle to meet them); of universal education for all patients; of professionals incentivised for outcomes met, not boxes ticked; of a funding overhaul that facilitates a multi-disciplinary approach; of seamless integration between primary and secondary care (hospital clinic and GP surgery); of increased staff training (no more waiting lists because only one nurse can deliver training courses/pump starts across a huge area); and of equal access to the very best treatment options wherever people live.
It was quite inspiring and made me wish that Professor Pickup (or someone with the same mindset) was in charge and empowered to bring it about.
In the evening I was invited to join the Input team, Dr Pickup and various other invited guests for a cracking dinner where we talked long into the night and enjoyed learning a great deal more about a pivotal figure in the history of diabetes technology.
All in all it was a thoroughly enjoyable weekend, and as often is the case with these events it is the small, incidental conversations had with other patients, pump users and parents of children with diabetes that made it special just as much as the 'big' presentations.
Disclosure-y gubbins: I was invited to attend the weekend but was not paid or asked to write this post. I paid my own travel and accommodation expenses, but was treated to dinner on the Saturday night.
Posted by Mike on Thursday, 26 September 2013
Does social media empower patients or confuse them?
When I arrived at Brandcast's groovy offices just off Regent Street the room was already filling up with a heady mix of cool and confident Social Meeja types, healthcare professionals and charity representatives. By the time the discussion started it was standing room only. I found a quiet spot and spent a few moments debating whether to avail myself of the funky Moleskine-esque notebook in Brandcast's signature bright pink. I gave Amy some encouraging smiles and nods.
What followed was a fascinating conversation about the impact of Social Media on patient experience. Almost inevitably the event was live streamed, and heavily tweeted under #smwdigitalhealth. Andrew Schorr gave a powerful account of his own experience, where the information and confidence he received through social media interactions led to him receiving completely different care, without which he quite probably would have died - "Social Media saved my life". Here are a few other snippets that stood out to me during the course of the evening:
"I have not a doubt in my mind that social media is empowering patients. But you need to know where to look/where not to look" Sneh Khemka
"Different people value and need different Social Media channels - everyone finds their own niche" Amy Burton
"Medics are, by and large, cautious of social medial" George du Toit
"Patients who share a diagnosis can push for therapies or question the use/effectiveness of certain drugs by working together" Andrew Schorr
"Some social media platforms are becoming the Trip Adviser of hospitals. Patients can assess the quality of their own care" Sneh Khemka
"HCPs need training in use and governance of Social Media" George du Toit
"What one change would I like to see? For more HCPs to engage with online communities" Amy Burton
As expected there were some concerns raised over the nature of some of the 'advice' in circulation in the FaceBlogTwit-o-sphere, over privacy and the potential (mis)use of data shared over social media, some of which can be quite staggeringly personal and sensitive. The general feeling though was that patients are making their own individual decisions about what they share with whom - and many of the online communities (from my perspective I would say particularly the DOC) are quite good at self-regulation, suspicious of 'miracle cure' nonsense and take all content with a healthy pinch of low-sodium condiment.
I suspect that quite a few in the audience were interested in gaining insight into how to 'leverage' social media channels (sorry, terrible industry phrase) on behalf of healthcare clients, private health providers and Big Pharma, it was encouraging then, that the panel recognised the crucial nature of transparency in these interactions. These online communities exist and are powerfully helping patients, but they are savvy, often fiercely independent and quite naturally suspicious of commercial interference. They will very quickly smell a social media rat if businesses come rampaging in with a clumsy marketing agenda.
It was great to hear the two healthcare professionals on the panel speaking so enthusiastically about their own use of social media in clinical settings (which seems to be on the increase as newly qualified HCPs come through who are already engaged in social media). Additionally there were some tantalising some glimpses of what might be coming next. For instance I had not heard of 'Watson' a computer system that is, apparently, better at diagnosing cancer than many doctors because it uses a constantly-updated database of research and evidence rather than relying on what it can remember from medical school and what Dr Sheh described as 'your own experience, prejudices and preconceptions'. What we need, he suggested, was the computer to number-crunch the data and evaluate the most likely diagnosis based on all the available evidence but then a sensitive, compassionate medical professional to interpret/relay that diagnosis in the light of the individual person in front of them.
The final question for the panellists was, 'What one change would you like to see?'. Half the panel wanted to see more involvement from healthcare professionals in social media communities, while Sneh Khemka rather pragmatically suggested that giving interactions/consultations over social media some sort of tariff so that healthcare professionals would come to see them as 'proper' earning work would be a sure-fire way to drive that.
We shall see!
Disclosure and all that. I wasn't paid to blog about this or attend the event. Diabetes UK kindly paid my train fare and Brandcast Media gave me a nice bottle of beer and some tasty nibbles at the end of the event. I decided against taking the notebook.
Posted by Mike on Friday, 6 September 2013
Type 1 Diabetes - a 30 second guide for busy journalists and scriptwriters
Too busy even for the introduction? Click here!
OK. Enough really is enough.
Over the past 24 hours I have seen a *lot* of comment about a piece published in a major online newspaper site yesterday. It is a site that often seems to struggle to get the basics of diabetes the right way around - and it is not the only media resource to struggle, not only that, but TV and movie scriptwriters usually get it just as wrong too. I guess it's understandable... before diagnosis I knew *nothing* about T1 Diabetes either. But if you are going to write about it, it would mean an awful lot to all the people living with the condition if you could just spare 30 seconds to get your head around the basics first.
The story concerned a woman who was forced to leave a popular high street fast food outlet because staff mistook her insulin injections for drug abuse. Thankfully it was rapidly corrected by the site in question following a slew of complaints from PWD. The following snippets have been quoted elsewhere from the original version:
"Sarah P, 36, ordered a Big Mac from the fast-food chain last Friday and used her EpiPen to inject herself with insulin to increase her blood sugar level before tucking into her meal."
Type 1 diabetes accounts for ten to 15 per cent of all people with the condition and if they do not inject enough insulin through the day it can lead to a state called hypoglycemia."
I've marked the obvious errors in italics. Inaccuracies that might cause fatalities elsewhere if someone decided to be a 'have-a-go First Aid hero' are marked in bold. I am given to believe the full article contained many more.
I realise that journalists are busy people, so I've put together this 30-second guide to Type 1 Diabetes. That's a full five seconds per bullet point and five seconds to rest at the end.
1. Type 1 diabetes is an autoimmune condition unrelated to diet or lifestyle and while commonly diagnosed before the age of 18 can occur at any age of life.
2. Successful management of Type 1 involves avoiding both hypo- (rhymes with LOW) or hyperglycemia (HIGH blood glucose)
3. Insulin drives blood glucose levels down.
4. Carbohydrates (especially sweet/sugary/non-fatty foods) push blood glucose levels up.
5. Almost all 'emergency' situations the public will encounter are likely to involve LOW blood glucose, treated by a sugary drink, glucose tablets, fruit pastilles or jelly babies. Administering insulin under these circumstances is potentially fatal.
2. Successful management of Type 1 involves avoiding both hypo- (rhymes with LOW) or hyperglycemia (HIGH blood glucose)
3. Insulin drives blood glucose levels down.
4. Carbohydrates (especially sweet/sugary/non-fatty foods) push blood glucose levels up.
5. Almost all 'emergency' situations the public will encounter are likely to involve LOW blood glucose, treated by a sugary drink, glucose tablets, fruit pastilles or jelly babies. Administering insulin under these circumstances is potentially fatal.
So there you go. Not too hard was it? Feel free to pop off and have a celebratory tallskinnycappufrappuwhatnot.
It's all about the balancing act to keep the little green ball in the diagram above centred between the two bars of nastiness. Too much insulin and blood glucose can fall to a level where the brain cannot function properly leading to confusion and sometimes convulsions or unconsciousness. The remedy is simply to raise blood glucose levels with something sweet. Preferably liquid. Hypoglycemia, low blood glucose (if you still don't get it, think hypo-allergenic) is usually swiftly treated by the person themselves, but if you come across a Type 1 behaving very oddly or aggressively, not making sense, slurred speech and sweating profusely - the chances are all they need is a few swigs of Lucozade and in 10 minutes they'll be as right as rain.
Hyperglycemia, high blood glucose (still struggling? think hyper-active) is usually caused by either too much food or not enough insulin. It is annoying, but does not usually present any immediate danger - apart from the fact that the T1 in question is likely to be a bit grumpier and thirstier than normal. Long term though, over several years, it can cause all sorts of nasties... blindness, amptuation, stroke, kidney failure, neuropathy and a host of other 'diabetic complications'.
Of course there's quite a bit more to it than that, and before anyone chips in, yes of course I realise that there are some very urgent medical situations that involve high blood glucose levels leading to DKA, but let's just get the basics in place first and then work from there eh?
If you are hungry for more detail you could always download the Diabetes UK "Reporting on Diabetes: A Guide for Journalists"
Posted by Mike on Monday, 2 September 2013
Annual reviews and first appointments - A guide for junior Doctors,trainee DSNs and other HCPs
To state the ridiculously obvious - Type 1 diabetes is not always very easy to live with.
The relentless requirement to monitor, juggle and account for a hundred-and-one variables (food, doses, exercise, weather, stress, hormones... you know the drill) while trying to live a relatively normal life day to day can be quite a frustrating business.
It is a great comfort to know then, that we have a number of ferociously clever and wonderfully kindly professionals that we can regularly visit who are dedicated to supporting us in our daily battles with the big D. Most of us will only get a precious few hours a year to receive this input, so it's important that we can make it count.
A month or so ago someone who I consider to be quite a good friend (which is odd really since our contact has only ever been of the remote and electronic variety) shared an experience of an appointment with a young and perky Registrar which, from what I can gather didn't work out too well. I think it's fair to say that my friend has now - some weeks later - just about managed to come down from apoplectic-teeth-grinding rage into the significantly calmer strangers-crossing-the-street-to-avoid-thunderously-angry-expression.
This got me thinking about what it is that we long-term pancreas-impersonators (or newly diagnosed for that matter) might hope for out of our precious appointments. If you've not done many D clinics before (or even if you've been running them for years!), here's what I would hope you would bring to the party:
Hello
First impressions count. I've met a lot of HCPs for first-time appointments and you would be surprised how many don't introduce themselves. It's a busy clinic, I realise I may never see you again, but it would be nice to know who you are.
Please, please, please just take a moment before I come in to skim read my file. If you are checking that information is up to date then be a bit careful of how you ask those questions. "So... you have type 1 diabetes?" might seem innocent enough, but some people you will be seeing might have been living with their condition for longer than you've been alive - so it's not really a question that needs to be asked. T1D isn't really something that's going to go away. Know my type. Know how long ago I was diagnosed. Know what direction (if any) my HbA1cs have been moving recently and what insulin(s) I am using. If you are checking records for accuracy and up-to-dateness, tell me that you are checking. Otherwise I'll think you are an idiot.
It isn't your fault
This is slightly unfair, but I'm afraid there's nothing to be done about that. You have no way of knowing what sort of horrendous appointments I have endured in the past (I haven't actually, but many have). The last thing we both want is for the steel shutters to come down behind my eyes and for me to descend into 'smile-and-nod' grunting, just waiting to leave - that will do neither of us any good. Here are a few of the states-of-mind in which I have arrived at appointments over the years:
Not a number
I am not my numbers. I am not my A1c, my high this day, my low that day. These are information, but they don't define me and certainly don't necessarily represent the amount of effort I am putting in. Ask me what I'm aiming for, and why. If you think my A1c is too high or (too low) don't say anything until you've found out what I think about it. Ideally you've already picked up some story-so-far clues from my file (see 'Hello'). There is always ALWAYS something to improve. I want us to work together to make my numbers just a little bit better by the time my next appointment comes around, but I don't need telling off. Ever.
Questions, questions
Questions are your friend - I know you know this already, but it is worth restating nonetheless. Ask me what I am looking for. Find out what I am already doing (or considering starting) to try to reach my goals. That way you'll be in a better position to give me some really helpful pointers. You'll realise, of course that I may have come in with my guard up. You might have to tease the truth out of me, but asking the right questions will make us feel like more of a team - that you are on my side. Be especially careful if I have brought in any information, charts, print-outs and so on - you would be astonished how often these carefully prepared sheets are simply brushed aside. Pay them attention - ask me if there's anything I've spotted that needs looking into. If you spot what you think is a pattern, ask me whether I think it is significant and if not, why not. Sometimes type 1 diabetes is just random and frustrating, but a fresh pair of eyes and a healthy discussion about tactics and options can be just the thing to open up a new line of experimentation. Think of yourself as a top-flight Premiership football coach. Talk to me about strategy, technique and tactics rather than how far to kick the ball.
Never assume I know something
You may be up to speed with all the latest diabetes management techniques and fully immersed in decades of diabetes research. As a long-in-the-tooth patient, you would be forgiven for believing that with all my years of experience I am bound to have come across all this knowledge already. Carb counting... basal testing... dawn phenomenon... difficult foods... correction and insulin:carbohydrate ratios... I may know about these, but ask a carefully phrased question to assess my current approach to challenging day-to-day management situations in order to fill in any blanks I may have in technique and understanding. Once again the questions are crucial - otherwise we are into dangerous chicken-ovulation-inhalation territory.
Never assume I know nothing
Obvious really. But few things will sour our fledgling relationship quicker than you assuming that I have no idea what I'm doing. You never know... I might be one of those people who has read many of the academic research papers that are freely available online these days. I might have spent time keeping up with developments in technology, treatment and even the minutiae of NHS funding options because this stuff really matters to me. I may even have some interesting opinions - it won't hurt to ask.
Never assume. Anything.
That's your 2 second 'lift test' right there. If this is the only bit of this post that you remember, then we'll get along fine.
What about anyone else? Any hints and tips for HCPs for the perfect first appointment? As ever, comments welcome below.
The relentless requirement to monitor, juggle and account for a hundred-and-one variables (food, doses, exercise, weather, stress, hormones... you know the drill) while trying to live a relatively normal life day to day can be quite a frustrating business.
It is a great comfort to know then, that we have a number of ferociously clever and wonderfully kindly professionals that we can regularly visit who are dedicated to supporting us in our daily battles with the big D. Most of us will only get a precious few hours a year to receive this input, so it's important that we can make it count.
A month or so ago someone who I consider to be quite a good friend (which is odd really since our contact has only ever been of the remote and electronic variety) shared an experience of an appointment with a young and perky Registrar which, from what I can gather didn't work out too well. I think it's fair to say that my friend has now - some weeks later - just about managed to come down from apoplectic-teeth-grinding rage into the significantly calmer strangers-crossing-the-street-to-avoid-thunderously-angry-expression.
This got me thinking about what it is that we long-term pancreas-impersonators (or newly diagnosed for that matter) might hope for out of our precious appointments. If you've not done many D clinics before (or even if you've been running them for years!), here's what I would hope you would bring to the party:
Hello
First impressions count. I've met a lot of HCPs for first-time appointments and you would be surprised how many don't introduce themselves. It's a busy clinic, I realise I may never see you again, but it would be nice to know who you are.
Please, please, please just take a moment before I come in to skim read my file. If you are checking that information is up to date then be a bit careful of how you ask those questions. "So... you have type 1 diabetes?" might seem innocent enough, but some people you will be seeing might have been living with their condition for longer than you've been alive - so it's not really a question that needs to be asked. T1D isn't really something that's going to go away. Know my type. Know how long ago I was diagnosed. Know what direction (if any) my HbA1cs have been moving recently and what insulin(s) I am using. If you are checking records for accuracy and up-to-dateness, tell me that you are checking. Otherwise I'll think you are an idiot.
It isn't your fault
This is slightly unfair, but I'm afraid there's nothing to be done about that. You have no way of knowing what sort of horrendous appointments I have endured in the past (I haven't actually, but many have). The last thing we both want is for the steel shutters to come down behind my eyes and for me to descend into 'smile-and-nod' grunting, just waiting to leave - that will do neither of us any good. Here are a few of the states-of-mind in which I have arrived at appointments over the years:
- I have identified a problem or issue and I have no idea what to do about it. I'm hoping for suggestions.
- I have identified a problem or issue and I am working on it. Your suggestions might be something I've already tried and found not to work.
- I have identified a problem or issue and I think there's a gadget/change of insulin that might help.
- I know things have been going OK recently and just want my results, thanks.
- I know my results are a mess and hope I'm not going to get some kind of telling off. Don't you understand how impossibly difficult this is to do day to day?
- I'm past caring, nothing I am doing seems to make any difference and previous clinic suggestions have just made it worse - I would ask about psychological support, but what's the point?
- I don't have time for this and want it to be over as soon as possible.
Not a number
I am not my numbers. I am not my A1c, my high this day, my low that day. These are information, but they don't define me and certainly don't necessarily represent the amount of effort I am putting in. Ask me what I'm aiming for, and why. If you think my A1c is too high or (too low) don't say anything until you've found out what I think about it. Ideally you've already picked up some story-so-far clues from my file (see 'Hello'). There is always ALWAYS something to improve. I want us to work together to make my numbers just a little bit better by the time my next appointment comes around, but I don't need telling off. Ever.
Questions, questions
Questions are your friend - I know you know this already, but it is worth restating nonetheless. Ask me what I am looking for. Find out what I am already doing (or considering starting) to try to reach my goals. That way you'll be in a better position to give me some really helpful pointers. You'll realise, of course that I may have come in with my guard up. You might have to tease the truth out of me, but asking the right questions will make us feel like more of a team - that you are on my side. Be especially careful if I have brought in any information, charts, print-outs and so on - you would be astonished how often these carefully prepared sheets are simply brushed aside. Pay them attention - ask me if there's anything I've spotted that needs looking into. If you spot what you think is a pattern, ask me whether I think it is significant and if not, why not. Sometimes type 1 diabetes is just random and frustrating, but a fresh pair of eyes and a healthy discussion about tactics and options can be just the thing to open up a new line of experimentation. Think of yourself as a top-flight Premiership football coach. Talk to me about strategy, technique and tactics rather than how far to kick the ball.
Never assume I know something
You may be up to speed with all the latest diabetes management techniques and fully immersed in decades of diabetes research. As a long-in-the-tooth patient, you would be forgiven for believing that with all my years of experience I am bound to have come across all this knowledge already. Carb counting... basal testing... dawn phenomenon... difficult foods... correction and insulin:carbohydrate ratios... I may know about these, but ask a carefully phrased question to assess my current approach to challenging day-to-day management situations in order to fill in any blanks I may have in technique and understanding. Once again the questions are crucial - otherwise we are into dangerous chicken-ovulation-inhalation territory.
Never assume I know nothing
Obvious really. But few things will sour our fledgling relationship quicker than you assuming that I have no idea what I'm doing. You never know... I might be one of those people who has read many of the academic research papers that are freely available online these days. I might have spent time keeping up with developments in technology, treatment and even the minutiae of NHS funding options because this stuff really matters to me. I may even have some interesting opinions - it won't hurt to ask.
Never assume. Anything.
That's your 2 second 'lift test' right there. If this is the only bit of this post that you remember, then we'll get along fine.
What about anyone else? Any hints and tips for HCPs for the perfect first appointment? As ever, comments welcome below.
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