Diabetics are treated badly by the public and healthcare staff

[lookluv]

I have been a type 1. since the age of 3 that is 50+ yrs.

I am now in my mid fifties and have a few complications which is hardly surprising - no one is perfect. This week I have had full frontal utter rudenss from nursing staff about my diabetes.

I ended up in ED for the first time in my life with a diabetic issue which I think is pretty good going. I was told, Did I realise my problem was self inflicted and if I ahd kept better control then this would not have happened.
I spoken to like an idiot, patronised and listened to someone talk toa student infront of me as if I was an inconvenience. she said - "what you ahve to remember is most diabetics do not get it is their fault and they just do not do what they are told.

I got asked if I knew how to test my blood sugar?
Did I know what a CGM is?
How bad was my control? - not how good my HbA1c is, which is 6.5 ish usually

In the end I lost it - pointed out that at the age of 3 I did not choose to become a diabetic and not all of us were self inflicted and they should think before they opened their judgemental mouths.

No I did not have good control as a child and teenager because we used to test our sugar by taking 5 drops of piss and 10 drops of water and dropping a tablet in to see what volour it went. I remember blood testing coming in where you matched the blue and green colour on a bottle. I remember when very expensive machines came in and gave you a reading in about 6 mins on a good day.

I do know my mother was given 2 glass syringes and 6 stainless steel needles and told her that was her lot for me and to boil them to make them sterile.

Sorry rant over - I have had a gutfull of judgement this week.

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Women get this for being female. Autistic people get it for being autistic. Black women are treated worse in childbirth. People don't listen when I tell them about the effects of Hypermobility Syndrome Disorder.

I spot a trend. (At least your husband is male so that one helps ) It's shit.

Thanks.

Agree!

The "you'll get diabetes if you eat too much junk food" is very prevalent in society, taken from superficial understanding of health messages.

Was the research because they diagnosed you and then discharged you with little to no support?

Closed loop systems - prioritised for younger patients.
Allegedly at my ripe old age - late 50s I am not a priority and they are targetting younger type1s and they think older diabetics can not cope with the technology and it would be dangerous!
I personally find that insulting - from someone who grew up with the evolution of blood testing, cgm and stand alone pumps - believe me, I can learn v quickly. I had one of the original pumps but found it no better than regular injections and the number of times I pulled the tube out in my sleep was getting tedious - I am a very restless sleeper!

No. I joined a forum as I was trying to find ideas on what to eat really and quite a few studies were published on there which I read, so my research really was quite accidental I suppose. I have my HBA1C done annually, then the eye thing every two years. Not sure if I should have any more input from the GP.

With the closed loop system, are you sure it is not a post code lottery issue?
During my third pregnancy, I asked for a pump and they said no. I moved house during pregnancy and went to a different hospital.
One day while discussing diabetes I mentioned that I wake up 4am as normal to inject myself with novoRapid then go back to sleep. To prevent myself from going high as I suffered from bad Dawn phenomenon. The doctor eye opened and that is very dangerous. I said my other hospital doctor was aware and said it was fine. She started saying no that is dangerous and why were you not given a pump instead? I said the other hospital said I was not eligible. She said you here now and if you want I can get you an urgent referral to our pump clinic. I said I want it.
She warned me about the dangers and said they will test my ability to carb count and see how much I remember from my dafne course. Then they will give me one, which they did a week later.

Two very different experiences, with the same pregnancy. I asked for pump both before the pregnancy and during it, was told myriad of reasons why I wasn't eligible. Then from one conversation I got a pump.

you were pregnant - priority for a pump.
56 yr old farts who usually manage an HbA1 of 6.5 ish are seen to be under control and coping - ergo priority to others.

Like you I am bad dawn phenomenon person and by adjusting my longer acting can manage to stave off the rise till 0600 but that took ignoring all the diabetic nurse advice on timing and working it out myself - took 6 months when the bastards stopped making insulatard still not consistent but can get 4 days runs of low and not hitting over 10 not but then some days can wake up with an almighty high and realise I buggered it up. No one can tell em insulatard and humulin have the same action profile - after 30 yrs of one and 6 months of the other I know!

What is dangerous about waking up at 0400 to inject 4 units when you know if you do not your blood sugar is going up to 15/16?

So many health professionals have not a clue about the reality of what they allege they are experts in.

@lookluv i forgot about that old hidden gem of T1 care. You are doing too well so you aren’t eligible for xyz. Like by trying you aren’t worthy of something that can help with the mental or physical load, whereas someone who doesn’t care gets technology thrown at them. Especially if they are young.(not everyone who struggles doesn’t care before anyone piles on, some are brittle, or short term going through treatments or hormonal changes, but if you don’t care it’s more likely you will fall into the sub-optimal HBA1C camp)

Nobody ever seems to think, oh that poor person has slaved away with syringes, peeing on a stick to test glucose, fixed meals (time and size) etc etc, maybe they deserve a break first.

@lookluv I'm not sure.where you have care but I think having dawn is a clear indication for a pump. Are you seen by a specalit team or the gp. My dh's consultant 15 years ago took our local ccg to task for not funding one for my dh i belive he offerd to support me in taking.them to court if dh died due to his significant dawn. Dh was given a closed loop 4 years ago at 52 as he has sight loss secondry to his type 1 and other health issues which makes life a bit harder. The joys of 50 years of diabetes. As an HCP I can sy its often mis understood, and I often have to remind collegues type 1 is genetic not diet, and our type 2 patients normally have.it due to long term.steroid needs

I remember telling a friend - who went to medical school- that I developed type 1 diabetes at 41 while pregnant and she said ‘yes your diet is not great’! And a doctor - in my early days I asked him if I had a high reading should I take insulin then or wait til I was having a meal and he told me to wait!
Eating a balance whole food diet does help me with blood sugar levels and I seem to have beat the morning highs, but I’m surprised how even the so called experts get it wrong.

I was diagnosed with Type 3c. As a result of immunotherapy causing my body to attack itself and partially destroy my pancreas. My diabetic follow up nurse admitted she knew nothing about it and I am the only person on my drs practice list to have it. Medical people keep trying to treat it as type 1 which is actually hugely different so getting treatment is really difficult unless I insist on seeing my endocrinologist. It’s almost impossible to control and has made my life an utter misery. It does now have it’s own classification on the nhs system but what good is that when 95% of professionals I made have no clue about it. It’s not self inflicted, weight and diet make no difference though I eat really well. High protein, loads of veg, beans, lentils, fruit. V little dairy as I’m lactose and gluten intolerant also as a result of my treatment, don’t drink, smoke or eat red meat yet I’m always made to feel it’s my fault and that I did something wrong to get this. All I did was get cancer. Not genetic not self induced, just bad bloody luck. I had a life threatening reaction to chemo and immunotherapy and it caused me a massive gastric haemorrhage and sepsis both which I’m told I should not have survived, ditto the cancer I beat the odds to the point my team say they cannot explain my survival. Yet I took it all, and beat the disease only to be struck with type 3c and even though they say it was 100% caused by the treatment every other medical professional makes me feel like shit as if it’s self caused and my fault. Everything I do/eat, every outing and day has to be planned meticulously as type 3c can drop me dangerously low in seconds. I could cope if I could expect even the most basic professional courtesy and u deranging of it. I wouldn’t choose this in a million years or wish it on my worst enemies.

This isn’t just a diabetes problem it’s an endocrinology problem. GPs, nurses and other unqualified people seem to think they know better than endocrinology consultants. I have a thyroid condition & had to go private because of know it all dickheads like this.

Oh boy you'd have loved (not) the things some people said when I had gestational diabetes OP! Most people were very nice but a few were rather not. I work in health care so pretty good at advocating for myself and knowing what is/isn't in guidelines for obstetrics care but had one dr who really didn't seem up to date with latest guidance regarding gestational diabetes. Insisted I'd need to be induced at 37 weeks. My gestational diabetes was exceptionally well controlled (purely because I was lucky and didn't suffer it too badly compared to some others, not because I was better or superior than anyone else). I did later on have a different consultant who was much more pragmatic and acknowledged that my diabetes was well under control and that inducing at 37 weeks was quite ridiculous. She was extremely supportive of my birth plans/wishes and did everything she could to make it possible, only suggesting small changes here and there to make it as safe as possible. Eg I wanted a VBAC and waterbirth, she said fab no problem, but I recommend you have the VBAC waterbirth in the delivery suite pool rather than the midwife led unit pool just incase anything goes wrong. I ended up having a fantastic textbook VBAC, spontaneous labour at 39+4 (induction was booked for 40+0). Went to hospital at 9am 3cm dilated, DD2 swiftly born at 11am with 15min pushing 😂 home the next morning, everyone happy! They didn't even have time to give a crap about my gestational diabetes during labour as DD2 arrived too fast for anyone to even bother checking my blood glucose lol