Hi,

Would anyone like to share their stories about their experiences with doctors nurses and everyone else in between?

I'm sure we are not the only ones who have had the run around from doctors, make to feel bad about using test strips and feel sometimes that we are left to fend for ourselves.

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when pens first came out in the 80s the insulin cartridges were available on the NHS, but the needles had to be bought from the pharmacy. They were a LUXURY. We didn't have meters then, as I think the strips were too expensive to prescribe. We used BM sticks that we cut in half length ways to get more out of a bottle. All the penny pinching I've done for the NHS and they still won't discuss pumps or CGMs.
Redshaw, I want a pump too. But apparently only 4 are allocated a year in our area!!!!!
When I was diagnosed with diabetes my GP was actually really good. Seemed supportive etc, passed my details onto the GP nurse to deal with me, lol The GP told me I was a T2 and I would only need Metformin. hmm!!

Anyway, saw the nurse and she started me on the metformin, checked my feet, told me to cut x y and z out of my diet and to be more active, Ok im over weight, but just because your over weight doesnt mean your automaticly a T2. None of my symptoms got any better, worse if anything over the next month, so I was placed on Lantus with my metformin, kinda helped but not too much, the metformin was making me sick and my day time BG were rubbish!! about a month later the nurse added apidra (which turns out Im allergic to, too) so changed once again from that to humalog, so now Im on Humalog and Lantus.

She still was not happy with my diabetes as it was getting controlled but something still wasnt right, so I got refered to the DSN who is amazing! before I walked in she said she had read my notes and was 99% sure I was a T1 when I walked in however she wasnt so sure, T1's are mostly slim? Im not slim :-p so now she didnt know, she ordered some blood tests a GAD65 which should how shown for sure if I was a T1 or 2! and arranged for me to be seen my a consultant.

Saw the consultant and he said ahh your a T2, he didnt even look at me, didnt speak to me, didnt want to know anything, walked in, your a T2 go back to your nurse! hmm!! great!

My blood results got lost so we never got the GAD results back, however the following week I went into DKA (really wasnt fun!) and now my DSN thinks im a T1 or a 1.5, maybe? but still doesnt know, lol

So, im sitting in Limbo, have no idea really what type of D I am (not that it matters) and have a crap consultant!

ohh, also my GP will not deal with ANYTHING to do with my diabetes, they tell me I have a DSN and consultant so all they will do is give me my prescriptions but see them for anything else!

Also there is no hope in hell of me getting a pump from the NHS as they cant make their mind up of my type, so I went and got one privatly, my DSN over see's it, but I pay for its monthly running :-(
Hi - if you are being looked after by a diabetes clinic, then it is normal that your GP doesn't have anything to do with your diabetes. That's the case with me as I asked my GP to change my insulin prescription and she said she can only give me my prescriptions, all changes have to be done by the hospital. Luckily, my consultant is pretty good.

I agree with you that the type is not important. Whatever we might have to say about the NHS, I am very grateful that I for one am getting the appropriate treatment even if I don't have an official type. (Well actually I do, but mine has 5 different names which makes it a bit confusing!) But if I were you I'd get on their case about your antibody results because it is just not on for your blood results to get lost!!!

I hope you have recovered OK from your DKA. It is possible to be in DKA and not have any antibodies.
Hi all!

I've been a type I diabolic since early infancy & have experienced all of the horror stories here at one time or another. The level of diabetes knowledge amongst most GPs is not good. Among diabetic clinic staff it is better but the lack of understanding can be even worse.

I've started taking care of myself again recently & have found my DSN to be very understanding after my absence from clinic for well over two years. That said, the main reason for my absence had been the attitude that I didn't care & wasn't trying hard enough. I still believe that attitude is the main reason that a lot of us do not have as good control as we should because we do not fit some stupid textbook model. I am not a set of results, I am a person with diabetes.

I have been on a pump, called Fido (he follows me round on a lead constantly), for six years. The fight i had to get it lasted 18 months. If anyone is having trouble getting one, take a look at the NICE guidance here . As with all things diabolic, get informed & argue the toss incessantly. If necessary, change GPs & hospitals. it is your right to do so. I have found the best GP surgeries are the ones which have a GP who specialises in diabetes. My current GP does & I would recommend him to anyone in Cardiff.

I could rant on for ages but won't bore you good people....
I love you! I too am diabolical! I too do not fit the textbook numbers! I too have had a period of not wanting to take much care of my results! I cannot be bothered to write down figures (I cannot copy them down, being numerically challenged! I can understand a single number on the meter but when I try to write it down - and there are lots of numbers, times, results, carbs ..... a 3 can come out as an 8 on the paper and it is all a faff!

My GP does not even want to discuss diabetes with me. My local Diabetes Nurse refused to entertain the idea that human insulin might be causing me problems and it took me four years to get put on pork insulin - they say that it is not available and that it is not effective .... (funny, I have some, and yes, it works!) but I have lost my hypo awareness because of being on human insulin for too long.

I have now changed hospitals - out of my county - 45 miles away, so a 90 mile bus journey each time, which is a lot better and actually have no problem with me being on pork insulin! So, one problem down, several to go, including changing GPs! Wish I could afford one of those downloadable meters so taht all I have to do is to do the tests and print off the information, but being unemployed ...... Rant over. Feeling low now, so I must be!

Wish I could have a Fido though, but there is only funding for 4 per year!
Ok, I've just reread the NICE guidance. The trust saying there is only funding for four pumps a year is rubbish. If you have recurrent disabling hypos or an HbA1c whcih you cannot get below 8.5, you are entitled to a pump. If you start by complaining to the Head of Medicine then the Trust Chief Executive, quoting the NICE guidance, they do not have a leg to stand on. Diabetes UK aren't much help on this. INPUT (www.input.me.uk) can be. It is run by a diabolic DSN who uses a pump. Your mention of your problems with numbers could actually help you on this. You could argue tht you not only need a pump but also CGM because of it. It might also be worth seeing if you could get tested for dyscalculia. It's like dyslexia for numbers & is not that uncommon.

Hope this helps & feel free to ask more. I am always delighted to help.
Can you come and drum it into my DN's head that I am not being difficult when it comes to numbers!???? She seems to think that I cannot be bothered (and I cannot, it is so disheartening whenever I have to look at all these numbers and try to write them down! I go into a cold sweat (not through hypos) every time I have to explain what happened with this number or that number and etc etc! But I want to get it right - for my own health if nothing else and every time I try to write something down it is such a faff!
I misread a number the other night and thought I was 18.8 but it turned out when a friend was looking at my machine that in fact I was 28!
dyscalculia i did not know that exsisted. that is my biggest hurdle with diabeties is the maths and getting my head arounnd the numbers. where woud i get tested for this?
After being in denial for many years and havong a scare in hospital i returned to my diabetic clinic. i begun testing 4 times a day and took my insulin wrote down everything i was eating and attempted to carb count which i still struggle with. when returning ti the clinc my diettion told me it wasdnt good enough and i was too try harder. Cumon i know that i wasnt getting it right but did she not understand how hard it wasd for me to get to that point of actually caring. Ive left that hospital and now somewhere that understands that am scard shitless and just dont get it. I hate professionals assuming its because im lazy! who are they too judge if there explored the issue further they realise i find it hard working out mental arritmetic and struggle to retain information.
What are our options when these things happen? Is this something that a campaign group could help with? Perhaps some kind of advocacy service could be organised by Diabetes UK (or another campaigning group, though this is the only one I know of).

This could be a really helpful service if there isn't one already. Imagine this: if you had an issue with a doctor not prescribing enough test strips or withholding prescriptions, you could raise it with the advocates. They could send a standard letter to the GP warning them of their responsibilities and threatening further action if they didn't meet them. If GPs continued to refuse care, they could follow up by assisting with complaints and so on. Hopefully it wouldn't get that far as the service could develop a good name for itself and go in with a light touch.

Just thinking aloud here... what do you think? Would you find this helpful?

I know I would have done... I've had awful experiences in the past :-( It took a lot of support from other people before I could learn to manage my doctor and pharmacist.
Oh interesting... I just visited Diabetes UK to see this message:

"Diabetes care survey

If you or someone you know has diabetes, there's a minimum level of care that every person deserves and should expect from their health service. Getting all the checks, seeing the right healthcare professionals and understanding your diabetes are all essential in helping you manage your condition. We want to know about the care that you, or the person with diabetes that you know, receives.

Please take a few minutes to answer the following questions.
We are particularly interested in 15 key areas of care; for more information on these measures, please visit www.diabetes.org.uk/Diabetes-Watch.

We can't always follow up individual complaints, but can use this vital information to get a clearer picture of gaps in services and to lobby the NHS to improve diabetes care across the whole of the UK. Please note that this survey is only open to residents of the United Kingdom. "

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