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Does anyone else feel like an appointment at the clinic is like going to the Headteachers office?

22 replies

DietCokeChipsAndMayo · 03/11/2021 13:51

DD is T1, she’s been diagnosed for over 2 years now and I still absolutely dread the day of going to her 3 monthly appointment with the consultant
It feels like being called to the Headteachers office
He’s never happy, I’m always doing something wrong, he has to change something every single time, I feel like he just looks for things now so he can say he’s done something
I just smile and nod now while I’m getting my telling off - and yes that’s exactly what it feels like! I hate going!

Her diabetes nurse on the other hand is fab and I can and do ring her if any problems or questions and she rings regularly for a bit of a chat and a check in aswell sometimes in between appointments

Does anyone else feel like this about the appointments or does DD just have an awkward consultant?

OP posts:
mneters · 04/11/2021 21:23

Haha I think maybe you have my same consultant and nurse! The nurse is so encouraging and understanding etc (I have two type ones!) and the consultant has no skills and bombards me with questions such as what did they eat 5 days ago etc etc and I can't think off the top of my head like that! (And they even on occasion get the boys notes muddled up and I have to correct them so it is confusing with lol) I think doctors etc can judge but having a type 1 24/7 is very different to just seeing every 3 months, they don't understand the day to day struggles

Strugglingalone · 04/11/2021 21:40

Yes!! T1 diabetic 20 years and it’s never improved, I dread it every single time, unfortunately now I just have a slightly thicker skin but can still be teary after a particularly tough clinic appt

T1 is the only health condition where you have the potential to cause death with every dose of meds and no control over how the body will react to said meds but the consultants seem to have no understanding of the daily toll of living with such a relentless condition

DietCokeChipsAndMayo · 05/11/2021 08:58

Omg I’m so happy it’s not just me!

It’s quite astounding that the experts don’t seem to have any understanding of the difficulty of managing it 24/7 isn’t it!
I can do everything absolutely to the letter, but sometimes her blood just goes haywire and there’s nothing I can do - you’d think he would get that! But no, I get told off 🙄

@Strugglingalone I’ve felt teary a few times after appointments too, DP thought I was being a drama Queen but it is just so frustrating isn’t it!

@mneters 2 type 1’s!! I take my hat off to you, it’s a full time job managing one!

OP posts:
isthisfishy · 13/11/2021 13:58

I have been T1 for 43 years and you would have thought by now I would be used to these appointments but like everyone else they really affect my mood and not in a good way! I have decided that the next time I go that I will just get some things off my chest. I am a professional and quite assertive but still struggle vocalising that the way I am spoken to is not appropriate.

WreckTangled · 13/11/2021 21:00

I used to hate going to the clinic when I was a teen (diagnosed at 12). I always sued to say to my dad 'I'd rather be at the dentist' Grin

My consultant doesn't have much to say to me these days and I dread my nurse/dietitian one more because they (get this) tell me my control is too tight Grin literally can't win! Might rebook my next appointment.

Oh also when I was younger (back in the days of having to write down all your results) I used to make them all up, months worth all in one day. No running away from poor levels these days with cgm etc.

I'm sure you're both doing a great job Smile

Oblomov21 · 21/11/2021 15:39

Yes. Completely. Diabetic for 47 years sinced aged 1. Have my annual appointment next week (yes I know it's supposed to be qtrly, but they are so busy I barely get one per year) and I'm already dreading it. Being told off. It's horrible. I'm going to tell them so this time aswell!

Maybe you too should say : "Dp you realise you make me feel xxx"?

Obsidiansphere · 21/11/2021 15:41

100% agree with you…it’s a long standing joke in the T1 community since forever and I’m in my 50’s and have always felt like this!

Oblomov21 · 21/11/2021 15:42

I too, used to write 3 months worth the night before!

Oh dear Mrs oblomov you really do need to do more testing.

Why don't you just bog off, is what I want to reply.

Fluffycloudland77 · 21/11/2021 15:45

The patriarchal attitude gets you nowhere with patients.

One day medicine will realise this 🙄

Lavender24 · 22/12/2021 14:32

I feel sad reading these replies. I see my GP who is very understanding as her husband is T1 and she knows we are people and not robots. She also doesn't push me to hand over cgm readings as she knows I find it intrusive and not helpful. I let the drs download my readings at the antenatal clinic when I was pregnant as I told myself it was just temporary but I found it so so stressful. Looking back I wish I'd said no.

I know this thread is a bit old but @isthisfishy good luck with asserting yourself with your consultant - you can do it!!

wankywomble · 22/12/2021 19:40

@Lavender24 thank you!! I am sure I can

AnnaMagnani · 22/12/2021 19:45

Ha! I spoke to a patient today who has just got relaxed targets as he is poorly - he reported how relieved he was to have finally got rid of 'the tyrant!'

I used to do diabetic clinic years ago - we all knew the readings were made up in the waiting room.

MrsColon · 22/12/2021 19:49

To provide a bit of balance, a LOT of diabetes patients made stuff up that they think the doc wants to hear rather than being honest about it, which makes managing the patient's condition really challenging as you can see that the readings say x whilst the patient is insisting y.

MrsColon · 22/12/2021 19:50

*make not made

WreckTangled · 22/12/2021 20:07

I've got a phone review between Christmas and new year and I'm really considering cancelling it. My hba1c was great and I'll just get told off for it being too low. Can't be bothered as I've heard it all before.

Oblomov21 · 27/12/2021 10:19

I had the most awful clinic appointment this month, worst I've ever had in 40 years. I told her if this thread. How we felt we were being put in the naughty corner.

I dreaded going. It was the worst ever. I tried to explain how I felt. Consultants just don't get it. Don't care? How can they not care, that many/ most of their patients feel this way?

DietCokeChipsAndMayo · 28/12/2021 20:08

This thread had fell off my TIO and I’ve just looked back to see so many more replies

@Oblomov21 how did they respond to you telling them how you felt? Tbh I hadn’t even considered doing this but maybe if we all spoke up more they’d get it? Maybe I’ll steel myself up to do the same
I’m dreading the next appointment even more than usual as DDs bloods have been wild over the Xmas period 🤦🏻‍♀️

OP posts:
WreckTangled · 30/12/2021 15:59

I just had my appointment. I thought it was with the nurse and dietitian but it was my consultant. It went like this:

Consultant: how are things going?
Me: oh yeah everything is fine. I've got Covid though
C: oh sorry to hear that what are your symptoms?
Me: x,y and z. Managing ok but have had to increase my basal by 100%
C: oh ok but you're managing ok? Great. Hope you have a happy new year. Bye!

Confused
Gem176 · 13/01/2022 12:13

I'm my experience consultants are taught to assume that all patients are unintelligible idiots, I'm guessing it is because some are and need to be treated like very small children. When you demonstrate that you are not one of those that's when the second part of your diabetes journey begins.

Speak up, advocate for yourself and the condescending attitude dissipates. It's life changing. I've been type 1 for 19 years. For most of those years I avoided clinics and consultants like the plague. It didn't do me any good. The abject misery that clinics brought me as a teenager pushed me to completely ignore my health for YEARS.

As a 30 year old I found my voice, started communicating with my team again but instead of passively sitting there being berated for a condition that only those living with it truly understand I chose to be brutally honest. It was the best decision I ever made.

If you are a parent of a type 1, I sympathise with you, I'm a parent and the worry that must come with parenting a child with a chronic condition is unimaginable. Please do not teach your kids to be passive, allow them to become experts in their own diabetes, one size does not fit all. When they are old enough and know their own diabetes encourage them to say "excuse me, but, no", even if that means saying it to you too. They know what works and what doesn't. Empower them to speak up for themselves and tell the doctors who only understand diabetes on paper that real world diabetes is very different. Many consultants fail to see that when they go into an appointment that they aren't the only expert in the room, show them. Advocate for your children so they learn to advocate for themselves. Sometimes it may feel rude but ask them if they have any concept of how it must feel to be for example 14 years old, at a time when all you want is to be the same as everyone else but are instead markedly different. Coping with an illness that you have very little control over yet walk into a place where you should be supported and are criticised because apparently you did something wrong with absolutely no leeway given for the many variables in diabetes that we have absolutely no control over such as hormones, stress, temperature. It is so damaging and absolutely no wonder that many teenagers "rebel" against their diabetes.

Burn out is real, clinic avoidance is real and it's not exactly surprising given how many people on this thread alone say it fills them with anxiety. Type 1 is not easy. It's not just controlling your own diabetes either, it's a million different things, including dealing with a general ignorance to the realities of living with it from both health professionals and the general public.

I don't know how to change it but I'd like to, currently people living with diabetes are twice as likely to commit suicide. That's horrifying!

Clinics and consultants are meant to be there to help, I would strongly advise not allowing the consultant to lead the conversation. Instead go straight in with what you are struggling with. They should be helping not criticising. As human beings they find it much harder to criticise any "failings" when you have already told them it's something you are struggling with. Diabetes care has come on so much in the last 20 years alone that there are now so many different treatment options they should find something that works for you.

Is it a bastard to live with? Yes!
Are you going to have bad days? Yes!
Is it going to make you angry? Yes!
Is it unfair? Absolutely.
Remember don't let the bad days outnumber the good, don't let the angry days outnumber the happy, don't let the injustice of it eat you up, ask for help whenever you need it, don't hide how you feel or shrug it off and most importantly do not accept judgement from anyone else.

wankywomble · 13/01/2022 16:08

@Gem176 fantastic post! You captured living with diabetes perfectly

Gem176 · 14/01/2022 18:33

@wankywomble thank you! Excellent username btw, wish I had been a bit more creative 😂

CatJumperTwat · 17/01/2022 18:57

I feel this SO MUCH and I'm strangely emotional to realise it isn't just me. My blood pressure is always ridiculously high when the nurse checks it at the beginning of my consultant appointments, because I'm so anxious.

My current consultant is very nice and supportive, but I suppose the scars run deep!

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