Close encounters of the worst kind – an everyday encounter with @NHSDiabetes

Close encounters of the worst kind – an everyday encounter with @NHSDiabetes
Close encounters of the worst kind – an everyday encounter with @NHSDiabetes

Six monthly diabetes clinic appointment time and I was in high hopes. I had my agenda, knew what I wanted to say, and had prepared all my data. I’d arranged an early appointment and knew what I needed to do to see the top dog at the clinic, who was in residence today. I think it’s fair to say that I went in with a positive attitude and was, for once looking forward to it.

On arrival at 8.45, I popped up to the desk and asked to see the head of the department as they were in residence. The chap on reception grunted acknowledgement and I went to drop off the urine sample.

Within ten minutes, I was called in for processing, and the nurse observed that I had ketones in my urine yet a normal blood glucose level, which I got the impression they hadn’t seen before. I had to explain low carb eating, and the nurse seemed happy with that. Initial blood pressure was 150/80 after I dropped all my stuff on the way in and got a bit flustered. Five minutes later it was 125/78. A new best reading in a white coat scenario. Going well so far. Blood was taken and away we went.

25 minutes later, I was called in for my appointment. Par for the course that the clinic was already running late. Unfortunately I wasn’t going to improve that delay.

But I wasn’t called in by the senior physician. No, I was called in by a Specialist Registrar. Strike one for the clinic. We don’t care who you wanted to see. We’ve already decided that you should see someone else. You’re not that important. Let’s see. This is the third appointment at this clinic and the second Specialist Registrar I’ve seen. So I knew we’d be going back to the start and explaining things. Again. Oh bloody hell.

As we were already 25 minutes behind schedule, I decided not to kick up a fuss and persevere. It couldn’t be that bad, could it?

We sat down, and was asked by the registrar how are things. So I answered him.

  • They are okay
  • I try to aim for an Hba1C of 6 or under
  • I look to keep my standard deviation below a third of my average blood glucose level
  • I split my basal like this but it results in dawn phenomenon that I have to manage like….
“Wait a minute, you do what with your basal?”
“I split it” 
“How? Let me understand your day”
And off we went. I explained when I get up, what amounts of insulin I do when, why I do them like that, how I run different basal amounts for different types of day, how I can’t take a larger evening dose to elongate the action time or I go low overnight, and therefore have to take a rapid shot when I get up, how I mainly eat low carb, how you have to bolus for protein like you do carbs, splitting bolus for protein, etc. I had to go back and explain how I bolused for carbs and the timing and then how that worked for protein. This was extremely frustrating.
The chap looked at me a little shocked. 
Then I carried on:
  • The reason I adjust my basal insulins is due to exercise on regular occasions three or more times per week.
  • I’ve basal tested and know I get a flat overnight but it starts to run out around 5.30am and bloods rise from then so I take a fast acting shot on waking
  • Any more overnight basal and I will go low.
  • My other half is worried about hypos
And presented him with Libre data including the Ambulatory Glucose profile and Diasend similar data, plus the individual data from Dario recording, which shows a limited amount of the early morning phenomenon I was describing in the AGP.
Unfortunately, he didn’t understand an AGP. Now I know I’m quite mathematical, but I really don’t see how it’s hard to understand an ambulatory glucose profile and it tells you what you need to know – the pattern of glucose levels throughout the 24 hour period.

Even then, through the night, there have been lows after gym sessions and they are easily visible on this picture, which I gave to him:

He didn’t really get it.

Instead, rather than CGM data, he wanted to look at the finger pricks. As he couldn’t get my Libre to download onto the Hospital Diasend system, I had to log in to my Diasend so he could see what finger pricks I had.
He was disappointed there weren’t more. I had to point out that I was using the Libre so didn’t need to prick more. So far then, the Specialist registrar wasn’t living up to his name. 
His next question? “Why can’t I see this dawn phenomenon of which you speak?” Because, as I told you earlier, I manage it. I don’t want high and variable blood glucose levels. This was one of those “I don’t believe you” conversations, because I hadn’t presented him with the data. Almost along the lines of how could a patient work that out for themselves? Expletives spring to mind. 
We then had a stupid conversation about going to bed at a higher blood level so I could take more basal insulin. I call it stupid because I felt it was an utterly inept way to look at it. I pointed out that if I did that then I was not going to get my Hba1C to the level I, and by the way, NICE, wanted it. And that it was me who would suffer the complications that I would endure as a result of being higher, not him. The NHS would only suffer costs. He might as well have advised me to start smoking. I think he got that. But, come on…
And then I dropped my bombshell. “As a result of the above, and that my other half is worried about me having hypos, I’d like a pump please”. 
“No. You don’t qualify under the NICE guidance”. 
I was gobsmacked at the response. Did this gentleman not know that NICE guidelines are not the only way? I thought this clinic was supposed to be a pump friendly one. How wrong I was!
So I reverted to listing the ABCD guidance and ticking off the ones that apply:
• Specific quality of life issues:
– Marked glycaemic excursions/dawn phenomenon
– Excessive number of injections for optimised control
Back to “your numbers don’t show  DP”, no, because I manage it. I’m not stupid. And yes, there are a lot of injections, and those are recorded. 
“But you don’t qualify under NICE guidance”. In my head I was shouting at him “Do you understand how this works? NICE is not the only way? Are you just too stupid to get this whole process?” but I refrained from this approach in the room. 
“No but under the ABCD advice, I do qualify”. After negotiating using the “Broken Record” technique like this for ten minutes, he caved. 
“I am but a small cog. I’m the small fish and can’t make a decision like this, but I will put the case to the senior doctor when we get to the end of the clinic and we can have an appointment in two months to go over the decision. If I get a yes, we will make this a pump clinic.”
Half an hour explaining how I get a good Hba1C and the ABCD advice to get to this point, and I had to fight. At least it was a vaguely positive outcome, even if it wasn’t the resounding “Yes” I was looking for. But it really shouldn’t have been this hard.
After all of this, I was told “You understand this better than I do”. Perhaps that’s because I’ve been doing this for 27 damn years, and I live with it everyday. How can you possibly understand that and how it works for my diabetes? And if you can’t even read AGP data, how are you ever going to learn?
The most disappointing thing about this is that I turn up using self funded technology that makes my life easier and that gives much better insight and ability to manage my condition, and the guy I speak to basically knows nothing about it. Or about the impact of macronutrients on blood glucose levels. I decided not to try and get into a discussion about the delaying effects of fat. He just wouldn’t have understood it. And yet he is considered to be “Specialist registrar”. Specialist in what exactly? 
As you can see, this was a very frustrating clinic, and I took to Twitter soon afterwards to vent off steam. It wasn’t the best experience I have had at a clinic. 
As I left, he said “You are the most precise patient I’ve ever met” by which he meant I had data to show him and that I understood what was happening with me and acted on it to manage myself. While this shouldn’t be a surprise, it gives a scary insight into what managing diabetes care means in the NHS and what has to be dealt with from patients themselves. 

How did this make me feel?

In two words, because one is not enough, extremely angry. How angry? Enough to invoke a fight or flight response in my blood glucose levels, pushing me up 3mmol/l in the half hour period.
What got my goat? Let’s start at the top.
  • Not seeing who I had asked to see.
  • The person I saw not really having a clue about modern techniques for managing T1 diabetes
  • The person I saw not knowing about the effects of food on diabetes
  • The person I saw seeming mystified that I a) might ask for a pump and b) would insist that NICE wasn’t the only way to get one
  • I felt that for the first half of the meeting I wasn’t really being listened to and that the way I managed my diabetes was being treated with incredulity and almost disbelief
This was possibly the most frustrating appointment I’ve had in a long time. It felt like “Diabetes care by numbers”. When I wrote my piece on changing the T1 Care model, I mentioned recognising the type of patient you were seeing and needing to earn respect on both sides. I felt this took a long time and I left at the end with, I think, him finally understanding what I was asking for. I double checked he knew why I felt that I qualified for a pump and that he was going to put the right arguments across. 
Throughout this process, I decided not to mention Sugar Surfing as I knew that would cause issues. I had to discuss low carb, because I had Ketones in my urine. This didn’t seem to be an issue, so there are clearly more of us out there eating like that and it is at least familiar.
Given the positivity of the TalkT1 event run by Partha Kar recently and the output from that, I was very disappointed in this experience. I keep being told that my clinic is a pump friendly clinic. 
But this seems to be a very narrowly defined pump friendly. Pump Friendly if you have a poor Hba1C. Not if you want it to make your lifestyle better. I did suggest that if I needed to get an Hba1C at >8.5% I could do that for him so that it would be very easy. He looked horrified that I might suggest that!
As one of my Twitter contacts mentioned, it’s the people interaction that makes or breaks clinic appointments. In this case, yes it was the people interacting. But it’s frustrating when Diabetes Care professionals  just don’t know about many of the T1D techniques that are everyday operations for a lot of us. Twentieth century care in the twenty first century has no excuses. 
It was experiences like this in the past that made me stop attending diabetes clinics at St Georges. We haven’t anything new to tell you, your Hba1C is okay. Boxes ticked, move along please. Heaven forbid that you might want something out of the ordinary. As someone else tweeted, these kind of appointments can set a persons care back months or years.
All in all, an extremely frustrating morning for me. It felt rather too un-patient-centric, although we eventually made it to that point, and I don’t apologise for asking for something on the NHS that I know I have already and self fund. 
The inconsistencies across hospitals and individual doctors is really scary and disappointing, at the level of giving out pumps and even knowledge.
I’m a fighter and I will continue to do so, but if you weren’t, a day like this would have very negative effects. 
I left today with a spark of hope but a great deal of disappointment and frustration. I intend to win somehow, but it was not the best day for @NHSDiabetes. 
*If you’ve read this far, then I’ll tell you it was St Thomas’s Clinic where this occurred. It’s all over twitter so no need to hide it!

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