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My diabolical clinic

Yeah there is no DAFNE over here. the best you get is the Carb lesson from the Dietican. who loves the starchy carbs with every meal.

i was only dx in July and i know your frustration with no getting a response!! i was calling them all the time but hardly ever heard back.

I'm afraid i've given up on them. I thought DR Khan was one of the enlightened ones who wanted the patient to be involved and a lo carb advocate but after my last meeting with him on the 12th december i've given up all hope of proper treatment to be honest.

I've just had to go back to doing exactly as i am told and not thinking for myself. because when you go it appears they already have in their heads what they want to tell you and nothing you say will make them change from the script. like my "i'm on metformin, my hair is staring to fall out, i feel sick all the time, my numbers are not good regulary going into the high teens, my arms and legs getting massive pains and throbbing if i walk anywhere, i have chest pain and back pain, and generally feel like poop, when i was using insulin (not that i ever want to go back on that stuff) i felt fantastic and didn't feel half as poo as i do now. could it be the tablets making me feel under the weather?" doc- "no its cant possibly be the tablets- cue lecture on losing weight (even though am barely eating and trying to excercise but teh exhaustion is killing me.)

i've just had to give up.

But of tools!!!!
 
Meela83 - it's not silly to worry about having a hypo especially in a public job you enjoy and worrying about losing responsibility etc. I thought about being a teacher once actually and still might go down that road and I've had exactly the same thoughts. It sounds as if this new nurse is really paying attention so that is a good thing and hopefully she can get you on the road to lower blood sugars. Have you thought about going back to Low GI or even Low GL by the way? Just a thought.
 
Manxangel I feel sad that you have given up Although I can completely understand why you have but in a way I really want you to keep fighting. Do you know what your last HB1Ac was? How do you make sure you are on the best medication? Also I notice you don't know what type you are? Type 1 is insulin dependant and Type 2 is tablets and diet or diet only but you seem not to be coping on tablets although your hardly eating, your constantly lethargic. It seems like you are a Type 1 but they haven't diagnosed you a Type 1 yet. Why did they take you off insulin btw? Was there a reason or do they just do to you what they do to me which is state that they are changing your medication and you have no clue why? I know it's nearly impossible to get in touch but I suggest you try to get them to try you on the insulin again possibly. I know you said you don't like it but if that is what you need then it will save your health from deterioration in the future. I suggest if you are going to then the best way is by letter by registered post. That way you have proof you have contacted them and I think they have so many days to respond. I'm waiting until my 30th birthday (next month) and if they haven't then health services will be told EVERYTHING about them. I think if they knew they would wipe the floor with them but I always try to give people the benefit of the doubt so that's why I haven't many times in the past.

You haven't been diagnosed long but I've had around 12 years of that clinic and Dr Khan although supposedly the best doctor is someone who I've had runnings with in the past. Especially when he mentioned how I looked gaunt and thin and that he liked big women!!! I actually walked out I was so upset. The MAIN REASON I COMPLAINED TO MY GP FOR MANY MONTHS was because I was upset I was too skinny and I had been praying for a solution. IF HE HAD CHECKED HIS RECORDS he would see all this but they don't, they never do and their records are always wrong.

Infact I am complaining to health services so if you feel you want to complain too at least you will have a back up because you will have another diabetic on the Island complaining about the same thing so let me know if you want to. Of course it's up to you and I don't want to pressure you but I'm just mentioning that it might be easier to get a response and we would have a stronger case should two diabetics complain near the same time!

I find it very worrying you are having pains in your legs.. I don't know if that's connected to diabetes or not but you need to keep strong and keep fighting - same as me. It shouldn't be a battle but unfortunately it is at the moment. Despite this I really don't want you to give up. Keep going and don't give up ok.
 

I've read her horror story on another forum and it seems obvious that this is the case (LADA) but the doctor is too narcissistic to think out of the box that only children get Type 1 and adults are always Type 2
 
Dear Rach
I've just had a thought.
Have you tried the local papers?
Sometimes they can shame people into better behaviour.
Call and ask for the journalist who does medical articles.
 
hey, oh i dont know darlin!!!!

I have had a really rough time trying to cope with this and so i haev just had to take a back seat for a while as it was going to end up driving me mental.

I would love to complain. in fact i'm ready to go back up there in the next few days. The tabs are really not working. Dr Khan wanted me on tabs when i was first dx but i kept throwing them back up. I was put in insulin to lower my BG rapidly as i had fasting readings of32 and 33 thanks to the Lloyds Chemist in Strand Street. (poor woman didn't know what to do when she saw those numbers)

It is all so complicated. and yes Dr Khan is a real pain although for some reason i do like him. I think he is stupid and wont listen but i cant help liking the man. it really does my head in!!!!!!

I will see how it goes in the next few days when i have to get back in touch with them. and see what happens. but if i don't get a response i will be with you all the way and get a recorded letter to them. and see what happens then.

well i think DR Khan must like me as i am a big lady! only 24 at Diagnosis which is why they dont know what type i am.

Probably type 2 i have been told. but with the metformin not working it looks as though there might be a change on the cards.

I have to get back to work. i'll be in trouble!!

hugs! xx
 
Hi manxangel. Well when you get your head together and are ready I think you should go back.

I just wanted to update you and everyone that I managed to get a call back today from the clinic after ahem... ringing up saying that I was going to complain to health services if I didn't get a call back by Friday. It was harsh words but I felt enough was enough. Strangely enough I received a call back and I'm seeing them tomorrow so shouting does sometimes achieve the correct results :!:

I just don't like being a shouty type person but I guess sometimes it's necessary :|

But.... it means you should never give up trying. I go with the motto "If you don't succeed, try and try again".
 
Hi Rach79,
You were assertive, not aggressive and it worked. I find that nine times out of ten the answer is assertiveness.
Well done you, they are not the one who is having a tough time.
Write it all down and make sure you get a satisfactory answer to everything tomorrow and if you don't understand say so and if you don't see why they are proposing something say so.
Good luck, be thinking of you,
Catherine.
 
Thanks Catherine. I will bear that in mind.

They are placing a glucose monitor on me for a few days otherwise they said they would just be fumbling around in the dark trying to find a solution.

I guess it was more assertive but I threatened health services with quite a stern voice which is not really me but I felt like I was on a losing battle and I explained that on the phone when they finally called me back.

I'll let you know if anything else happens but at the moment it looks as if I'm on the same insulin for a bit. Although it could be a good thing :|
 
Right so part of me feels a bit like a human guinea pig because I don't think they had used this monitor on anyone before but the main thing was that it showed I wasn't making stuff up and my blood glucose was everywhere. I had a hypo yesterday and the day before that and in between my blood sugars were above 20mmol sometimes. So my A1C showed 6.8mmol which looked great on paper (like I told them when I wrote to them) but in reality my blood sugars are everywhere and they got to see this. It was a very formal meeting with the consultant talking more to the other members of staff rather than to me but I still managed to say a few things although it was slightly intimidating with 5 people in a brightly lit room EEK!

I'm going for carb count next week and although it's not quite DAFNE it's a start. I'm still keen to change my insulin as I was told at the meeting "doesn't quite work like it's supposed to". When I asked about changing my insulin they kept stating my insulin was best in their opinion but I stated a little I wanted what was best for me. However they did offer the pump to me and now there is a waterproof pump (because I love swimming) so I was quite surprised but don't know if the pump is best or the older form of Mixtard insulin :roll: . Anyway the meeting was definitely one of the more positive ones than I've ever felt I had but how long this positivity lasts I'm not sure. After that I was too shy to say anything else but anyway there is the story so far and hopefully after an hours carb count next week things could improve but if not I'll definitely be changing my insulin. It's a case of waiting and seeing if improvement is made with my insulin for now though which hopefully with the carb count it will do.
 
sugarless sue said:
A step forward Rach,good luck with the carb counting course.
Click to expand...

Thanks - it could make a world of difference or it could not but yes it is a step forward and I'm glad I didn't let them put words into my mouth like Catherinecherub stated. I made sure I understood things and was sure of what I wanted so I kept it in mind (thanks Catherine btw)
 
We have to stand up to them and show them that we are not the media-stereotypical couldn't care less people.
 
Well done Rach79.
It is you that has the diabetes and at the end of the day you have to be the one in control. If the medical staff make you apprehensive just imagine them in their underwear. They are only people like you and me.
Regards, Catherine,
 
Rach79
I am so pleased you are making some progress with your clinic. I had an appointment with the nurse on Thurs changed to Lantus and she taught me to carb count. I can honestly say I don't remember the last time I had so much energy, bs are down to 5-6. I feel like I can decide what and when I eat and my stress levels have dropped hugely! Hope it helps you as much xx
 
That's brilliant news Rach, I'm so pleased for you. Keep up the good work!
 

:lol: That might help! Thanks

Also cheers to everyone else also. I have been given a new dose to try by the Doc and it appears to be going ok for now.

Rach
 
oh i am so made up that things seem to be working out for you!

I know they love the intimidation they have done that to me and unfort i've never had the guts to stand up.

Maybe i will now because eventually. they do listen!
 
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