Diabetics are treated badly by the public and healthcare staff

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?)...

@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.

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

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).

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.

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

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.

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

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.

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.

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.

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 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

Oh @lookluv so many of these truths are so familiar to me.
I'm the parent/carer of my DC who's now early 20's but has been T1D since age 7. They have 'brittle' T1D although that term is no longer allowed apparently and it is seen as 'problematic' or 'wilfully out of control' by a lack of self care (so fucking not true btw). My DC is also autistic and has ADHD. T1D has also stunted their growth and their teeth are falling out which is caused by a rare complication of T1 mixed with a genetic issue but basically they are stuck in a child size body. Their HbA1c has always been between 8 & 10 and no amount of tweaking, changing insulin, carb ratios etc makes any difference. At one point they had DC at hospital for a 24hr period (to prove it was me at fault) doing carb counted meals and exact insulin injections and DC maintained a blood sugar of between 10 & 16 the whole time because even most top up insulin units had no effect. Some weeks DC is in an almost permanent state of hypo regardless of treatment but they still won't use the term 'brittle' now.

As a child DC had 3 monthly check ups at our local big hospital, access to child psych services, dietician, immediate phone advice and a yearly full health MOT which helped them enormously but at age 18 they were transferred to 'adult' care at which point all 'care' kind of stopped. In the last 5 years we've seen (in person) a consultant once and I've had to fight to get 3 monthly telephone appointments and those are mostly with a nurse. Our local T1D centre isn't based at the local hospital but at some outbuildings in an abandoned, condemned ex hospital over 30 miles away which is 3 buses each way (£36 in fares for us both) and a second centre is nearer but has no bus service to get there & back so also isn't an option. It has also gone down to yearly checks only so I'm always fighting for better treatment for DC.
Our local doctor surgery does DC's annual diabetes check (which I had to request) which we had last week with a physician assistant who went at us for a solid 30 minutes about food choices and the importance of carb counting but only did a short foot check (using a pen rather than a wire prodder), couldn't do an injection site check because she didn't know how and couldn't find a new insulin pen on the prescription list to order a new one. Luckily I can do her job for her and check injection sites, know what to order for diabetes supplies etc. Our local surgery will not do the annual blood test either because the NHS no longer pays them to do it so we have to go to the hospital for it (2 buses each way).

But here's the thing....I am dying. I have less than a year to live and as my DC's carer I am so anxious as to what will happen to them. My DC is very intelligent but autism makes their life so difficult and they can't deal with health services or anyone 'official' themselves as they have selective/involuntary mutism although with intensive coaching from me they are getting a bit better.
I've asked for more support for DC but despite everyone saying it will happen, it doesn't because there's no money available. My local doctor surgery have said that they get 'paid' only for T2 care so all the money is spent there instead and have refused to provide a room for a T1D drop in service at any of their 4 surgery locations for even just 1 day a month because it's a waste of resources.

There are plenty of thin people with Type 2 diabetes, including myself sadly.

And also I’d assume her records show she’s not a frequent visitor which means generally speaking she’s got it under control.

If you’re attending frequently I think the conversation should be different but why does it have to be blame all the time. I’d be asking what’s going on and why it’s happening so frequently and what could be done or what support was needed.

OP I agree with you, the ignorance is astounding around diabetes.

No. More recent research suggests that being overweight can be a symptom rather than a cause. There are many, varied reasons for developing Type 2. For example, there is a particular condition in our family that leads to Type 2. My sibling developed the condition and I developed Type 2. I also saw some research that suggested also that around 30% of adults diagnosed with Type 2 have been misdiagnosed.

Not necessarily…

DH and I were both equally overweight. DH has a history (recent) in older generations of his family when he was in his late 30’s, early 40’s. That generation was not very well-informed about the disease, so no connection was made by them between lifestyle and T2 diabetes.

DH developed Diabetes 15 years ago. Despite having the same lifestyle and being just as overweight - spoiler alert - I didn’t! So yes, lifestyle can cause T2, but some people are just predisposed to it.

Give over. They absolutely did not have to say to OP what they said.

My last diabetic nurse pushed me to introduce muller yoghurts to my diet, generally doing the opposite of what a diabetes nurses advises is fairly wise.

That's awful, your poor friend. There was that guy a few years ago who had a debilitating hypo on a bus and the police tazered him because he wasn't responding. I wonder how many lower-level instances of mistreatment happen due to lack of understanding of hypos.

Don’t forget though, if you have to many hypos they complain about that too!

Wow thats bad! My son was tested when diagnosed they saw he had developed antibodies for his thyroid and they just check him yearly now. I cant believe you had to go private! It should just be a standard yearly test for diabetics.

Re your treatment from hcp I would absolutely complain to PALS. I'd keep records and complain again and again. I'd complain to Diabetes UK too as I'm sure they would be interested that in 2025 type 1 diabetics are still experiencing this kind of prejudice. I'd consider writing a blog, sharing your journey.

My sister was 14 when diagnosed with type 1. The gp thought she was being bullied and asked if she wanted to speak to them without mu mum being present. She took her 3 times in 2 weeks to see a gp and was fobbed off. The 4th time she insisted she would not leave reception until a gp came and saw her. A partner of the practice saw her,tested her for diabetes on my mums insistence but warned her they felt it was unnecessary. My grandparents are type 2 diabetics as were 3 of my aunts at this point and so mum had some recognition of symptoms. Initial GPs said no as no family history of type 1 but rather type 2 but we didn't know this as grandparents had no idea if siblings or parents might have suffered. She was told to take her to the hospital just a few hours later and my sister almost died. She did receive a grovelling apology and we complained to the GMC. She never pushed medical negligence or anything like that as she didn't know she could have and was putting all her energy into learning about the condition and how to keep her child alive.

Sister them faced extremely poor care when she went to have her babies as the midwifery team simply didn't understand the needs of a type 1 diabetic new mum and how surgery would have impacted her body and blood sugars. My bil and mum had to advocate for her again. Many complaints were made to PALS and they were reprimanded by her diabetic consultant. What should have been a special time for her led to a lot of trauma.

Reading your post makes me so angry and disappointed that lessons are still not being learned. I'm glad that you were able to speak up for yourself but completely understand that it feels so frustrating.