Wednesday, 7 August 2013

Not What I (or Fred) Wanted

Hello readers. It's been a while. Sorry. 

Not much has happened since my last post so here's a quick summary:

  • I'm still have Type 1 Diabetes. I know! It surprised me too. So much that I was kindly given a t-shirt from my wife to reassure me that the cure is only ten years away - always has been since 1979!
  • Following my previous frustrating 'close but not close enough' result from the (still flawed) HbA1c measure I received my latest score from the Doctors a couple of weeks ago. On asking the receptionist she saw my big smile and asked if I understood what it meant. My reply of "Oh YES!" might have been a little over the top but I was very chuffed - 6.8%. Another PB so I'll take that. A good figure but still room for even more improvement. Although, if I stick at that for a few years I'll be happy(ish) too.
  • We had a fantastic holiday to Italy seeing many fantastic sights including the Colosseum, Sistine Chapel, Trevi Fountain, Herculaneum, Pompeii and Villa Adriana. Each fantastic but a special mention for the last as it was a surprising piece of magic. During the holiday Adam failed with a BUTTON ERROR and it was at that point that I realised leaving the holiday loan pump at home wasn't my cleverest move.
  • A little fact from the past was that I was almost called Fred before I was born. Not sure that's new news but I like to share things on every post. :)
Anyway, onto my main subject today. It's a story based on someone who recently (last week) went to his annual review at the hospital for a check-up and to hopefully gain a few tips and improvements at the same time. This person places a lot of importance on these meetings as the amount of time he spends with HCPs is limited to a few hours a year so the chance to meet the most qualified for thirty minutes is always a good thing. 

Things started worryingly a few weeks before when Fred was asked to move to a Friday appointment which Fred knew his usual excellent consultant didn't do. A quick call to the DSN proved this and instead he'd be seen by the new Registrar; let's call him Barney. Oh well, the previous Registrar he'd seen was a little nervous but admitted what she didn't know everything so it had gone OK. Fred, coincidentally, had also had a pump failure the previous week so his new pump had arrived on the Monday and the appointment was on the Friday. Fortunately he was able to download data from the failed one before it was returned but it meant all the data that Barney could download would be limited to three and a half days. No worries, Fred printed off the previous months BGs and dosages etc so they could use that for analysis.

Weight was measured before Fred went in and this was steady from his previous appointment so nothing to worry about. This time his feet weren't checked but he thought maybe that would be done afterwards.

Fred made the pleasantries as they met and Barney helpfully pointed out that he also had a renewal letter from the DVLA that they'd go through towards the end to identify if Fred was a safe person to drive. Immediately this put Fred on the back (unchecked) foot a little as he was conscious that being seen as a man out of control wouldn't be a good idea today.

Barney opened Fred's notes and asked a worrying question - and this was after discussing the pump and how it had failed - "So is it type 1 diabetes you have?". Erm, yes. For the last 34 years.

The consultation then followed with Barney reading Fred's notes and pulling out historical figures ("HbA1c is OK at 7.1%") and when Fred tried to update the number he just continued to read. Next up was the attempt to download pump data. Fred explained that the pump had been swapped so the data was limited but they could look at these copious reports he produced himself. No, that wasn't good enough. Instead they spent five minutes while Fred helped him work out how to download 3.5 days of data onto his PC.

Next for Fred came a textbook example of how to treat the condition and not the patient. Whilst focusing on the figures from the last 3.5 days Barney identified using the numbers below (for US, European and Aussie readers multiply all numbers by 18) .... 

.... that Fred has a huge problem with pre-lunch lows. Barney asked Fred "Do you know why you were low then?" "Not sure, probably a diabetes variable." replied Fred. "Hmm" frowned Barney giving a stare of "Are you stupid?". Barney then proceeded to explain to Fred that the low could be caused by too much insulin for his breakfast "that's your BO-LUS" or too much background insulin "which is also called BA-SAL". Fred decided now would be a good time to sit on his hands and count to ten.

Fred did try to point out that this was only three days data and he was concerned that big decisions were being made on limited information. At this point he showed Barney the rest of his figures....

.... but this was only glanced at by Barney before returning to his PC screen. (For those now analysing the data - Fred was overseas too between the 17th and 29th so this accounts for some random days in there for him). Barney decided that he'd write to Fred's DSN to see him in six weeks to problem-solve the lunchtime lows. Fred said that in the meantime he'd basal test on the following Monday and hopefully this should identify the cause. As an aside he did that today and the basal test showed an almost flatline between 7am and 12pm so he's tweaked the morning bolus ratio a little to solve the 'problem'.

For Fred breakfast is one of easiest meals of day so tweaks are helpful but not his big concern. Of more importance to him is the mid-afternoon dip followed by the pre-evening meal rise and the continual battle to find a plan of attack for nights out. 
Barney asked Fred if his feet were checked by his GP. Fred said no as he thought the hospital would do that. Apparently now it's the GP's role so he's to get a letter too.

The final step was to go through the DVLA form with Fred giving the obvious answers to the questions. This annoyed Fred as they were the true answers but he felt like he was lying (he wasn't!) just to get his driving licence renewed.

Barney asked Fred to see him again in three months so that they can go through the changes worked through with the DSN to solve the problem of the sample of four tests under four around the same time of day in a 3.5 day period. 

If they're going to focus on such timescales Fred needs weekly consultations as type 1 does that now and again; this week's problem is next week's solution.

Speaking to Fred afterwards there were a few things that annoyed him about the consultation so I asked him to list them in no particular order.
  1. The entire meeting was pretty much based on four days of data as that was all that Barney could download. Much more information was available but as this was user-supplied (just like the latest A1c) this was ignored.
  2. There was no historical consideration. Just like me, Fred's HbA1c has dropped from well into double figures just over two years ago through the 7s and now sits at 6.8. As said previously the number is a crap measure but as HCPs live by it, a little appreciation of the gains made would have been nice.
  3. There was very little eye contact or discussion. It was a return to the olden days of being told what was wrong and how to solve it.
  4. Fred offered some technical help with accessing the pump data using the PC and this may have intimidated Barney a little as he wasn't very open to Fred's very gentle suggestions on how it could be done.
  5. A couple of times Fred offered a couple of comments on how he felt emotionally about things. These were ignored and not once were the two key questions asked by Barney - "How do you feel?" and "Is there anything else you want to discuss?" These were the ones Fred really wanted as he needed to explore the possibility of some CGM access linked to long-term concerns. Oh well, only three months until he's back.
Fred came out of the appointment upset and frustrated at the lack of interest in his views and the fact he'd had a fairly lengthy 'telling off' about the 'problem' hypos he was having that he was obviously failing to deal with. The general feeling Fred had was that it didn't matter how hard he'd tried recently it wasn't worth the effort and maybe he shouldn't worry too much as the complications are coming anyway so what's the point. 

Is that how Fred should be feeling after his annual meeting?

Overall Barney may be new to the area and the position but he has to understand that he is treating a person not a condition. Win the person and getting a buy-in to your clinical expertise will be much, much easier.

As you can see Fred is pretty miffed and struggles to understand why, in times of financial hardship, the HCP he met chose to focus on a tiny bit of information as if it was the only issue. And even making it a bigger issue than other undiscussed worries Fred has.

Anyway. That's enough of a rant about Fred. I'm really hoping that the next time he sees Barney they can build a better relationship as, after all, if Fred has bad control he costs Barney's employers even more money to support.

Thank you for reading and I hope to have a cheerier post for you next time.

Take care,
Dave (not Fred) 


  1. OMG, has Barney possibly moved from Cambridge? Because I swear I have had that exact same appointment (and blogged/ranted about it too).

    I don't understand how they think an appointment like that is useful to us. Well, actually, I can - since they clearly know everything and we know nothing then we can only benefit from them telling us exactly what we're doing wrong. I get so frustrated sitting through an appointment when the doctor seems to think that you're an idiot who knows nothing about the long-term condition you live with day in, day out! And when the entire appointment is all about the things you're doing wrong, with no acknowledgement for the things you're doing right? So demotivating.

    Fred has my sympathies, and I hope he can see his normal consultant next time for a more productive appointment!

    1. Thanks for reading and yup, you're spot on. I'm hoping that other HCPs might read this and it can affect change slowly.

  2. An interesting analogy given that cartoon Barney lived in the stone age. This article makes me realise how good my daughter's Dr is with the meetings which always start with 'How are you Amy?' even though the latest A1c figure is lying hot-off-the-press in front of her. She always speaks directly to Amy (who's 12) rather than us, something I applaud.

    I hope Fred's next appointment goes much better; I'm just so glad this isn't happening to you too Dave :)

    1. Thanks for reading.

      It's surprising the differing experiences between hospitals and even as above within the same clinic!

  3. It's for very similar reasons that I dropped my consultant at Doncaster Royal Infirmary and eventually managed to sort out a move to Sheffield for my diabetes care. At the time my view was: "Even if I don't get to see another consultant ever again I am no worse off" - not a healthy place to be!

    There is less than 30 miles (in distance) between Doncaster and Sheffield, but they are worlds apart in terms of the quality and level of care given.

    I'm not sure what the answer is, but giving honest feedback like this to the people that can make a difference is definitely a start. To that end I've started to use @patientopinion - I just wish I'd told Doncaster what I thought of them before I left. I feel somewhat guilty now that others are there are getting (what I consider to be) very bad care and I did nothing to highlight it. I just hope that the care in Doncaster has improved since I left.

    1. Thanks for the link David.

      I think I'll add a few comments and hopefully they'll improve things before the next visit - can't be any worse!

      Really glad that the move for you has made a real difference.

  4. Hey .... Barney seems to have moved on! .... I knew 'Barney' in Lancaster but thankfully they don't seem to be employing Barney's at the moment.
    However, it is my experience that the 'numbers game' remains the main focus for consultations and heaven forbid the 'E' word is mentioned .... my emotional well-being or feelings, as they relate to diabetes or anything else for that matter, have never been enquired about in a hospital consultation. It's always a major project to work up to them, get as much as you can out of them, deal with the fall-out (which I find there always is no matter how well they go or how pleasant the HCPs are), and readjust to the next few months of doing what you can to manage diabetes and how it impacts on all aspects of life.
    Cheers Mr 6.8% :-)