Grrrr – and breathe.
I’ve just come back from a diabetes check up at my GP’s.
Aaaand breathe.
You see – when I took my son in for his six week vaccinations, they decided to corner me about not having seen the diabetes nurse at the clinic for over a year.
“Ahhhh”, I said. “That would be because I’ve been under the care of the diabetes department at National Women’s for the last 16 months”.
“Well”, they said. “We need you to come in and we’ll go through a checklist of all of your vital tests etc and check that your diabetes is under control”.
Me: “Oh, but you see I’ve been under the strictest care I’ve had in 15 years of having diabetes, emailing through blood test results every week. And my last HbA1c was 5.8%. And you’ve been copied on all the blood test results.”
Them: “Well the nurse who looks after diabetes in this clinic would prefer if she can check you over herself.”
Me: “I’ve never been more closely monitored in my life! I’ve been testing upwards of ten times a day, and my diabetes is better than its ever been. However, [here's the bit where I relent] if it would make you feel better about having an overall view of my health, I’ll agree to come in”.
So – today was the day. I actually hadn’t given it much thought beforehand, which is probably a good thing as it was PAINFUL. The nurse had a sheet with a load of things on it she needed to check. I would say 75% of the things she needed to check were provided in the last lab blood test I did, which was a month ago. So that annoyed me from the start – she could have done all of those bits without me even there (and really, could have done them twice as fast too).
Then came the bit about my latest HbA1c. Which wasn’t actually 5.8% (that was the one before, just before I had my baby). It was 6.6%. This was taken about five weeks after I’d had my baby. The physician at National Women’s was thrilled with me, calling it a fantastic post-baby HbA1c (let’s not forget how crazy the first six weeks after having a baby are). Let’s also get some perspective – hands up who would be thrilled with a 6.6% HbA1c? Yes, that’s the majority of you out there in cyberspace I’m sure. 6.6% is great! Did the (well-meaning, extremely nice but ultimately ignorant about T1) nurse think so? Her words: “HbA1c – 6.6%. [looks at me] Are you happy with that? [looks doubtful]“. I want to screeeeeeeeeaaaaaaam! “EXTREMELY happy”, I say, through gritted teeth.
And on and on it went. I won’t go into any more detail as it’s just a rant, but suffice to say there were quite a few dumb questions (such as “what sort of blood sugars are you getting?”) and well-meant, but half-baked advice.
Then she tested my blood pressure. Quell surprise, it was high! No wonder! I was about to burst a valve!
Anyway – to put this into perspective, of course I don’t expect a nurse at the GP to be an expert on diabetes. There is so much for those nurses and doctors to stay abreast of, across the whole medical spectrum (hence the term “General” Practitioner). I just wish she took a minute to digest this before giving advice, to someone who is clearly pretty clued up about the whole thing (there are letters and documentation galore from National Women’s saying that I’m intelligent, considered and diligent about my diabetes).
It’s like me (who specialises in digital marketing) giving someone my hastily-constructed advice on a television media campaign strategy. Out. Of. My. Area. Of. Expertise.
Deep breath.
Posted in Medical Services, Pregnancy, Slice of Life
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23 comments have been made on this post
Ali wrote
You are not alone! I had exactly the same phone call from my G.P’s nurse insisting I come in to see my G.P for my “free annual diabetes health check”. I explained that I had seen the Diabetes specialist team only a week ago and would be seeing them again in another three months. I respectfully (read “meekly”) asked if perhaps I could delay the G.P. appointment for a few months. Not a chance!!
Fortunately the rest of the experience wasn’t as painful as yours. I get to see my actual G.P. rather than the nurse and I have a good relationship with him. The Diabetes specialist team had already sent him a letter outlining the results from my appointment a week ago (great to see how efficient thaty are) so he didn’t bother asking me any stupid questions. He congratulated me on my HBA1C of 6.5% (the best I’ve ever had) although he did express surprise at how many bloodtests I’ve been doing to get it to that level (10-15) again showing that unless they’re T1 themselves medical professionals often just don’t understand how much work it takes to maintain control.
My G.P. also explained that the reason his nurse was so insistent is because the MOH (I think thats who he said) has a list of all diabetics and if they’ve had their free check, subsequntly hassling the G.P’s if they haven’t. But my G.P was able to change the computer system so that my name won’t pop up for another 18 months which is great.
It seems theres a huge double up though for people who access specialist care beyond the G.P. Do you think this is another system designed to catch T2s that T1s have got caught up in? I would imagine that most, if not all, T1s out there would see a specialist team at least once every 12-18 months.
Sorry for the long reply!
Nic wrote
WELL DONE ALI on your HbA1c of 6.5 (or 48 mmol/mol!) – that is fantastic!
Interesting re the MoH, that makes sense. In fact it was out of courtesy to my GP’s surgery that I agreed to have the check in the first place. I think I’ll have a word to the GP next time I see him though just re how futile it really is.
But I guess if by enforcing it they are helping keep less diligent people at bay, I can understand. It was just ever so paaaaainful.
Tory wrote
Hmmm sounds familiar, but mine was the locum when I went to visit GP in Nov. I had fainted and been unwell. His response…”well your diabetes is clearly out of control”. Okay, having known me for a grand total of 4 minutes, what was the basis for this judgement? That I had a pump so was obviously a “brittle” diabetic, and had been fainting & vomiting, so must have irregular blood sugars or DKA. I was 7.2 in the office when he tested me and my HBA1c was 7.7%. Not as good as Nic’s awesome 6.6 (wow!!!) but I was happy. IDIOT!! Turns out after second opinion elsewhere, I had low blood pressure – and vomiting was completely unrelated to my BGs (a latent bug from my trip to Peru in May). Go figure.
Donna wrote
slightly on the same subject but i really hate how my GP and GP’s nurse tells me off for testing my blood sugars too much!! I am a newly diagonosed Type 1 and it has been a real roller coaster ride for me, ive had some bad hypos while learning and lots of highs!! because of the bad hypos i have developed a bit of anxiety i test about 10 times a day while i still believe im learning and gaining confidence but they make me feel bad when i ask for a new prescription of strips!! and tell me im going through too many??? and that i should be testing no more than 6 times a day…..
Kim wrote
my lovely gp moved from the shore to practice in remuera several years ago, so i thought i would give her replacement a go. within a few minutes of meeting this new gp, she asked me to take a bg test, which was about 9 or 10 if i remember correctly (which i was pretty happy with) . she went on to give me a lecture about how it should always be between 4 and 8. really? i wasn’t aware of that! i then asked her if she had diabetes herself and had any idea of what a mission it was to stay between 4 and 8 all of the time. needless to say the rest of the appointment was a bit tense and to this day i travel all the way to remuera for my gp visits. it is difficult for people to understand that as type 1’s, we are the experts on our health with our medical team being our support.
Saffy wrote
Ali, I’m with you on thinking that it’s a system designed for T2s that T1s are caught up in.
When I moved to my current city I enrolled with what was supposedly an amazing GP (central city, married to someone with very high connections to the Ministry of Health) – I quickly ditched her after she expressed surprise that I’d test more than 3x/day and said that I didn’t need to see the hospital diabetes team, and that she could manage me.
Now I’ve found a great GP who knows that when it comes to diabetes he’s really just there to order any lab tests and write me a script. That’s all I need from him and, refreshingly, he knows that if I needed extra help that I’d ask for it – and as for nurses, well I’m sure they’re great at looking after T2’s but I wouldn’t trust their advice with my left pinkie.
Nic – it’s almost worth having a baby just to be under that fabulous care isn’t it? My 6 wk HbA1c was 6.6 too and I’d been beating myself up that my sugars were ‘out of control’ – hmmm yes you certainly get into a certain head space with such rigorous control. Just imagine how healthy we’d all be (and how much money we’d eventually save the healthcare system) if we all had the TLC to manage sugars in that range
Ali wrote
It seems like lots of people out there are getting “reprimanded” for testing too much! For years as a teenager I absolutely refused to do any bloodtests and my HBA1C was in the high double digits. They told me off. Now I test frequently and my HBA1Cs are under the golden 7% and … they still tell me off!
Also, like Tory I hate how every time you have anything wrong with you it’s automatically assumed to be related to the diabetes! Apparently we’re not allowed to have unrelated health problems.
On that note I remember one incident when I was a charming teenager packing a tantrum. My mother made the mistake of pointing out that because I was in a bad mood maybe I ought to do a bloodtest. My response was something along the lines of “I’m a Fxxxing teenager – It’s my job to be in a bad mood. Not everything is diabetes fault!”
Sianne wrote
Wow guys.
It always makes me feel better reading this blog because it makes me feel less alone with my experiences.
Every time I go to the doctor because I’m sick the Diabetes always gets blamed even if it has nothing to do with it. So frustrating.
I did ring up for a script for strips about a month ago and said I was testing 15 times a day. they rang back and told me I must have made a mistake as I should only be testing 3/4 times a day…grrrrr.
Kim I would love to know who your doctor in Remuera is?
On another note I had the opportunity on Wednesday evening to have a chat with a 15 year old boy who has been Type1 for a year now. He is having some difficulty as he is very in to sport and is finding his sugars very hard to control. Any advice I can pass on to him would be great. Also if anyone knows any other kids his age that he can chat to that would be great.
Amanda wrote
The obvious message from all this is to find an empathetic, knowledgeable, wise Endo. Not easy. We all have similar stories in terms of “try harder”, why test so much, could do better. Sickening and patronising behaviour. I think really chaps we have to put these ignorant people in place – they hate being asked if they’re diabetic for example.
We all work so blessed hard at trying to maintain a “perfect” level but diabetes is a cantankerous, mind of its own monster most of the time.
I’ve got to the stage now, having had diabetes most of my life and being older that it’s becomes easy to tell these people to mind their own business, or, to watch how they talk.
Us type 1 women with children prove that we’ve done something right with controlling our diabetes through pregnancy.
Not surprised you had a higher BP reading Nic.
Reba wrote
Ugh I know…It soo annoying that people that aren’t diabetic saying that I should do this and not that…I’m thinking omg my A1C levels are 4.9 I’m doing fine and stop telling me what I know.
Sianne wrote
Had an appointment with the endo at the clinic a while back and these are just some of the things he had to say:
“You should change your life to fit your diabetes” Because eating toasties as a quick meal before a dance class wasn’t good enough and doing exercise is bad for me.
He says “the pump is not a magic bullet, you still have to test” No really I thought I turned the pump on and it does everything and I don’t have to test anymore. Again does he think I’m stupid.
“That I should buy a minimed pump as it has integrated CGMS” Yeah I know its got CGMS but I can’t afford to pay $25 a day for the sensors so why should I pay an extra 3K for technology I can’t use.
“Diabetes is a serious disorder that you need to manage” Like I didn’t know that
I asked him about Insulin on Board and his response was “What???”
“How many units do you take before meals” Depends on what I’m eating idiot.
“I went to see another Endo privately on recommendation by a pump rep to see if he could help me at all because he has a lot of experience with pumps and I could spend an hour with him instead of the 20 minute appointments at the clinic. His response was “If you are going to see Dr X you shouldn’t come here” Nice one.
I told him I was trying to choose which pump to go with and he tells me all the pump brands and asks “have you seen them” No, I’m just going to choose a pump based on a picture, does he think I’m an idiot.
Bah Humbug
Renata Porter wrote
Sianne, my daughter is 16 and plays and coaches volleyball. She will play for her college team and she plays club. Kelsey and Marty both have several kids that write to them to share thoughts, questions…just sharing between diabetics. I am sure she woulld love to talk to your friends kid. You can direct them to my site and there is a contact us section. On there he can find Kelsey’s email.
Ok, now…I would like a list please of all these GP’s so I can make sure we aren’t with the same one! Holy Cow, ya’ll have me a bit panicked. We haven’t been to the GP yet, my kids don’t get sick. Kelsey was sick for the first time in over 10 years over the holidays and we went to the clinic. They didn’t give a rats patooty about her diabetes and come to think of it I never got a ring back on her results. She is fine now…which is why I didn’t pursue it. But seriously, those names please! (wink wink)
I have had to go round and round with doctors over my son. He was diagnosed with epilepsy and they put him on medications and put him through tests. He was allergic to these meds and ended up in the hospital over them. I knew in my gut it wasn’t epilipsy and I kept moving on to new doctors. Finally one day I was reading on the internet about sleep apnea and how severe sleep apnea can cause seizures. Now he is tonsil and adnoid free and sleeps like a baby with no seizures. Stick to your guns ladies…and YES I would kill for either of my kids to be under 7 for their A1c.
Donna wrote
thank goodness for this site!! i thought i was alone in this battle and that there was actually something wrong with me!!
Nic wrote
I can see I’ve really hit a nerve here! Thanks so much for all of your comments and experiences.
If I can ask one thing it’s just that we don’t get into a mud-slinging match on here (no-one has yet but thought I’d mention it in case). Happy for everyone to shout about the good ones but let’s not get into naming GPs etc who’ve wronged us unless they are more than just ignorant, and are worthy of a formal complaint. I think we have all come to the conclusion that our care is better off in the hands of our specialists.
Of course if there is someone who comments on this blog in your area you particularly want to get info from, you might be able to track them down via the Facebook page (www.facebook.com/beingdiabetic) and directly message them.
Cheers
Nic
Aaron wrote
I completely agree with everyone’s comments but I’m going to buck the trend and tell you all that I’ve found the best GP that I have EVER had! She is so fantastic and went to massive lengths to get 100% up to speed on insulin pumps when I told her I was thinking about it. She reads all my reports, will give me advice when I ask for it and support when I need it with a healthy dose of realism about how hard it can all be at times.
If anyone wants her details then I can HIGHLY recommend her. I even did a post a while ago to say thank you to her for being so amazing which is here:
http://www.beingdiabetic.co.nz/2009-09-19/guest-blog-gp-vs-endo/
I’d be happy to talk to anyone that wanted her contact details and give some more detailed info etc.
Karen wrote
What really got me angry the last time I went to the diabetes clinic in Christchurch, was a a very large nurse telling me that I was overweight and needed to lose weight. At that time I was going to the gym and struggling with lows and having to eat all the time after exercise. I only needed to lose about 5kg, it just really bugged me being lectured by her. If she can’t do it without diabetes, can’t she think about how much harder it is for those of us with it! Grrrr
I had to go back to the diabetes clinic recentlly after being ‘lost’ in their system, and not having an appointment since 2006, and I was really reluctant to go. This time I had the best nurse, she had diabetes herself, and it was just so nice to be talking to someone who can relate! My HBA1C had gone down from 9 to 8 in just over a month and she actually said ‘well done, you’re on the right track’. I never thought that I’d hear those words from someone at the diabetes clinic!
Its so good to know that everyone has these horrible experiences with their doctors.
Nic wrote
Yay for great GPs! I mean there are a million conditions out there so as I say I don’t expect them to know more than us, but I just wish they would recognize that and give credit to us where it’s due. A good example of this was when I was on the general maternity ward after having my baby. The midwives and staff there assessed pretty quickly that I was a switched-on diabetic and respected that by saying things like “you are the expert at diabetes, I’m not going to tell you what to do as you probably know better yourself”.
Donna wrote
one thing that also happened to me not so long ago, also at the christchurch diabetes clinic, i asked the nurse if i should perhaps have the necessary gear at home to test for ketones? she said your Type 2 you dont need to test for ketones, i was horriifed as we were just ending our half hour session and all that time she couldnt see on my notes that i was in fact Type 1!! She apologised when i corrected her and she sent me home with a new blood glucose tester that also tests for ketones!!
Nic wrote
Donna that reminds me of a mild version of what happened to the snowboarder Sean Busby who was speaking at the Diabetes Youth conference last year: http://www.beingdiabetic.co.nz/2009-09-15/diabetes-youth-conference-report-7-sean-busby/.
You make a good point actually – I hardly ever go to the GP either but have taken to somehow weaving it into the initial consultation that I’m a T1…I’ve got most of the way through consultations before thinking they’d have read I’m a T1 in my notes but I don’t know if it’s very obvious where that info is stored in the system!!
Ali wrote
I guess this all serves as a reminder that, although the professionals out there can be a valuable asset to us ultimately we all need to take personal responsibility for understanding and managing our health and diabetes.
Aaron wrote
Ali – Nail on the head!
Penny wrote
absolutely agree.
I am writing as a vent too having gone through this countless times having moved around ate least every 2 years in the last ten years (and usually every 6 months)
The top two were the GP who insisted I did only a fasting blood glucose at the lab (like that is going to help tell them what my control is)
And the nurse sitting there telling me how good my Hba1c is when it wsa in the mid 7’s ignoring my “it is not good enouth” – her reply it was the best she had among her patients (maybe but they are mostly T2)
Screem quietly
Alison wrote
As a mother of an adult T1 – and a registered nurse – I believe that most nurses do not have enough experience and knowledge to offer detailed advice in this specialist field. Perhaps you should all take up Aaron’s recommendation and register with his GP !! Or someone of similar abilities. I read this blog and admire you all.