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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I was diagnosed with type 2 and was not overweight and exercised . I pushed to get further tests as no medication or diet changes were making a difference.

turns out I have latent diabetes type 1.5 and now on medication that controls my sugars.

when I went for my first appointment with the diabetic nurse they gave me how to lose weight advice, wanted me to go to cooking classes and classes on how to shop for healthy food. As I cooked everything from scratch and ate healthy with a healthy BMI asked for more bespoke advice. They couldn’t, just maybe lose half a stone which would put me underweight.

i eventually pushed to see the community diabetic specialist. On a treatment plan. My annual GP review still gives me advice to eat healthy and lose weight. I feel they want me to be underweight and develop an eating disorder

Yup. Me and sister. I'm fat. She's not. Good, healthy home cooked food for her. I struggle (hence fat). She's Type 2. I don't have diabetes.

If you want people to be more understanding, maybe start giving that respect to others also.

I think my point still stands. Not all overweight people develop T2, we know that. Your chances of developing it are greatly increased if you are overweight.

I know anyone can develop it and I know there are many other factors.

I am aware there are many causes of T2.

So you're saying that it is no longer the case that being overweight is the biggest cause? Interesting.

This is just what I discovered a few years ago when I was doing quite a bit of research on it. It was something to do with metabolism. I read quite a lot of interesting research around it when I was diagnosed.

Pomoka - you are exhibiting the exact attitude that irks us \type 1s. Absolute ignorance of the difference and how one is easier to manage than the other.

As this is my rant thread - I will have a rant. !!
No eye issues until I got pregnant so 32 yrs after diagnosis. No one tells you that pregnancy in diabetes makes retinopathy worsen rapidly. They stick you in a diabetic pregnant clinic with a bunch of women who sit there bewailing the fact they have gestational diabetes and have to inject themselves in some cases for 12 ish weeks - thanks ladies, your lives go back to normal life - ours does not. some tact would be kind!

This particular issue was related to me breaking my toe when a lovely man in the supermarket, grabbed a bottle of wine, knocking two onto my toes causing an open fracture. Which despite good care from me got infected - yes my diabetes has /is contributing to the problem but it was not the cause of the bloody problem in the first place but not according to the delightful nurse in ED. 24 hrs before it looked good and then it did not, 8 hrs later I was vomiting and distinctly septic

Now please do not get me started on non diabetics wearing cgms and bewailing they spiked at 8 after eating something. The tone deafness of those people who do not get it, . if I eat a cookie wihtout guesstimating my insulin first I will spike from a good 7 to 11/12 within 20 mins. Now dont give me banana as that will hit 15 in the blink of an eye.

Pre foot issue if anyone can explain why }i start my 30 minute power walk at a balmy 8 and by the time I get back it has risen to on some days and others I will be crashing to 3.5 and others it just sits in a straight line.

For those of you who have kids with diabetes - do not stress too much. I have played sport at a national level, have 2 fab teens ( who did make my control worse when pregnant but are so worth it) travelled, work full time ( well not for the next few weeks!) ina demanding job and love my life but there is no doubt I would love to have a meal, just one, where I did not think of the carbs and then calcualte roughly what insulin I needed and then not need to check the rise after eating said meal for the next 2 hrs!
CGMs have made the ability to control type 1 easier than in Leeds2 and my childhood but the cost of the constant 5 minute psychological warfare of knowing what yur blood sugar is at any point of the day is in my mind almost a form of psychological torture - you never get to forget that you are different. For those parents - they will not coma if you do not know their blood sugar - Leeds2 and I are testament to that!

My eldest hates the cgm. .when it stopped working when we were on holiday - slightly remote trekking holiday, he cheered and said lets go oldschool and leave your phone behind!

Rant over but after 53 yrs and 5 months I had had enough

I think that what @lookluv is getting at is that medical services for T1D's is reducing and that T1D's are being shoved into T2 care which is mostly different in cause and treatment. In the last 5+ years we have seen a nurse trained in T1 once....just once. They all know the ins & outs of T2 but know so little about T1. The first one we saw looked puzzled at the blood sugar printout I gave her and didn't know what it meant or how to interpret it. One year we saw a nurse who was actually T1 trained which was great and the last few years it's been physicians assistants who know nothing about T1.
This year our surgery has admitted that they no longer:

• support T1 appointments
• do annual blood tests
• do annual urine checks
• provide a room for T1 drop in
• provide a qualified nurse for annual checks - it will be an general physicians assistants

They admit that they are actively pursuing T2 care because of money. They get paid for diagnosing T2 but because there are less T1's they lump the funds all together and then refuse to provide full care for T1's. 10 years ago my surgery told me that I'm T2 but I'm not. After some chemo my HbA1c went up to pre-T2 level(a known side effect which is temporary) so I have been diagnosed as T2. All of my blood tests since have been normal so I'm not diabetic at all. The surgery will not take T2 off my medical records because if they do they will lose funding and on the flip side, I don't get prescribed some types of drugs because I'm T2 - it drives me bonkers.

My son died of type 1 when he was 31 and my father developed type 1 in his 80s, so I'm pretty scared I may develop it too.

This
Why are they so keen to change what is working?!
Drives me nuts

Most NHS medical professionals are generalists not specialists and have no idea about specific medical conditions: you need to keep reiterating that you are seeing a consultant and theirs is the only opinion that counts.

Yes to the weather causing highs! What is it about the heat that does this? T1 does not follow a rule book which makes it very difficult.

As a parent having a type 1 child is terrifying. Especially one who is hypo unaware and doesn’t hear his alarms at night (I do luckily).

a friend's son has just been diagnosed t1, in his mid twenties and i cannot believe how rude people can be asking questions about other people's diet.
we are all so aware of being over weight and the risk of diabetes type 2, that we forget about diabetes type 1

@pottylolly - if only we could see an actual consultant. In our area money for T1 care has been reduced so much that the team is forced to operate from an abandoned hospital in the middle of nowhere with no bus services. People who have T2 issues are seen at the big town hospital - how is any of this fair?
The ignorance encountered from nurses and PA's who have no T1 training is huge and in some cases down right dangerous.
One nurse told us that DC didn't need to take glucose tablets prior to intensive exercise and told me to stop arguing and just do as told. So DC did and was rushed to hospital by ambulance after going into a diabetic collapse.
When DC when into 'extreme hyper state' and collapsed at home, I started treatment myself (by guessing at what to do) and was told that someone on the diabetic emergency line would call within 30minutes. NHS111 wouldn't/couldn't tell me what to do and it was a 24hr wait for ambulance attendance. The diabetes emergency team phoned me 12hrs later. By that time I'd got the hyper under control and they said "well seems little point in doing a hospital check now - we'll call and check on DC tomorrow" but they never did.

This is how deadly T1 is. DC would have died from that hyper if I'd not been there to treat them but I was flying by the seat of my pants the whole time.

I get the opposite. An assumption of T2 and high cholesterol despite all of the blood tests showing that I'm resolutely in the very healthy range every year - and each year, it's like getting blood from a stone to get the nurse to tell me the numbers instead of doing the full blown lecture about only having three biscuits a day/everybody loves chocolate cake/maybe try eating fish once a week/switching to wholewheat pasta before finally winkling it out of at the end of the appointment I didn't particularly want in the first place but she kept on calling.

It would also be nice if she knew that the bit saying 'coeliac' means I'm not going to be eating any biscuits, cake or wholewheat pasta unless I actually want to be simultaneously shitting, puking, sweating and crying twenty minutes later, but I'd settle for her looking at the blood results instead of refusing to give them to be because I wouldn't sit through the lecture about being diabetic, being prediabetic, well, the trend is there when it isn't, I'll add the fact you're prediabetic into your records in any case, as it's just a number, it doesn't mean anything, the threshold number isn't actually a threshold, everybody's prediabetic until they're diagnosed with diabetes (umm, yeah, like everybody's pre-dead until they get dead, I suppose?)...

@NeverDropYourMooncup the nhs supposedly empower patients to have choice and take control of their treatment. Whilst also promoting patient centred care and bespoke care plans. I am engaged in my diagnosis and a healthcare practitioner myself.

it’s hard to take seriously when they do not show these values at consultations. And it’s a tick box so I can get my meds reviewed. After being told to eat low carb, I asked what low carb should be. Told to stop eating cake and bread and start with more fruit. I pointed out the high carb and sugar count in fruit. Said would help me lose weight and eat healthy. Both I do not need.

my diabetic consultant was not pleased with my practice nurse advice. He said to continue what I was doing as I had researched what to avoid and what to limit.

OP I agree. T1 here for decades. My GP practice nurse who runs my clinic is, quite frankly, providing information which is against NICE guidelines and asked if after 30 years I know to carb count. If I didn’t I’d be dead. So I bypassed her and did a self referral to local hospital and the nursing care there is excellent and I see a young male nurse who has been T1 since a toddler. Despite being male he even has good advice for menopausal diabetics - I was thrilled that someone was listening. It was such a disappointment to hear from a 55 yo female nurse that was repeatedly saying menopause and fluctuating hormones have no impact on BG control. What a crock of rubbish. And that nurse also did the pregnant diabetic clinic too. Worrying.

My colleague with type 2 was also injecting insulin. We had another colleague with type 1 who had fewer complications. You don't know everyone, you dont know their issues and yes you are judgemental.

I knew three people who were diagnosed with Type 1 in childhood. They were kids in school with me.

All three of them are dead now. As a result of their diabetes. They’d be in 35-42 age bracket.

It’s a very scary thing.

oh yes the joyous menopause. that is a roller coaster on the old blood sugar and hot countries!
I eill not engage with my GP diabetic nurse - she told me to stop taking my insulin because my sugars were so good! to try reducing slowly over the next few weeks and do more exercise.
I walked out 20 yrs ago and have refused to engage with them other than get my prescriptions. As she is still the diabetic nurse there I will not go back - they are training up a new person to take over who is younger than I have been a diabetic. I di ot hold out much hope.

Now I get a phone call from their pharmacist who has less clue than the nurse does. REfuses to accept that after 30 yrs of using insulatard as a background insulin, that humulin she swapped me to because bloodu Novo stopped making insulatard is not the same. I do not care what the drug leaflet says - it is not working in the same way in my body and yes for 6 months as I tinkered with doses and timing my control was not as good - not my bloody fault though.

This is quite cathartic -thank you everyone. No one I know is a 50 yr old Type 1 or have lived with it for 50+ yrs and as is being shown on here - some people just do not get the difference

Theign2 - thank you for showing your ignorance of the difference and your judgemental sttitude.

If you read the title - it was not a judgement about Type 1 and Type 2 it was about the ignorance you so beautifully displayed that the diseases are different and for the few less than 15000 Tpe1s in the country we fight a daily battle which is very different from Type 1,5, Type 2, /3, gestational etc.

People like Leeds2 and I - never got the psychological support, diabetes nurses did not exist, emergency helplines and 3 monthly appointments were unheard of - is it our fault that our control was not as good when younger because the equipment and knowledge was less - no it was not. So do not tell me if I should ahve been better behaved and cheated less in my teens and 20s, It shows utter utter ignorance. Blood testing was starting to appear in the late 1980s but was v sparse, late 1990s more mainstream available by prescription - I had already been a diabetic 25 yrs by them CGMs started appearing in the mid 2000s -

What this thread has shown me is, I am not alone, there are a few 50+ yrs of Type 1 out there and yes the ignorance of the difference is massive.

You have been judgemental, don't kid yourself. My colleague with type two wasn't overweight, didn't have a poor diet, exercised and after many attempts at other treatments was on insulin. His condition was still impossible to manage as his hospital stays confirmed. He died within a few short years.

It isn't a competition, my friend having such a difficult time with type two in no way diminishes your own issues. It seems a shame you can't acknowledge that but clearly you can't. You condemn people for not understanding type one while not understanding type two.

Do show me where I have been critical of how you managed your condition as a teenager.

@lookluv I'm sorry you have met so many stupid nurses 🙄.

I used to work as a renal nurse and have had to care for many type 1 diabetics and I hear you!

Sometimes blood sugar doesn't do what is predicted or what would be 'logical'. Sometimes shit happens. Respect to you for getting thru 53 years.

I have been diabetic sinve I was 14 and I am 36 now and never experienced anything at all like this?

Theres more than just typw 1 and type 2. I have MODY diabetes. Try explaining that to people 🤣 its neither 1 or 2 its both.

They are starting to make noises about T3 diabetes. We're not there yet, but new info comes up all the time.