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 had no idea - that is terrible, particularly from healthcare staff.

I feel for you all, I have an autoimmune condition and a lot of health care professionals can't even pronounce it, much less even know what it is despite it being the second most common one! A senior nurse asked me "Wassat!? I can't even pronounce that"? I read lots of research stuff & there are a few things being developed to stop or control Type 1, I think it's one of the positives of AI crunching through data that would otherwise take years to research.

You’re not unreasonable and I as a Type 2 was discussing this with a colleague who is Type 1 just the other day. There is a lot of misinformation about both types out there both in the public and medical spheres.

I've a family friend who has been arrested for drunk and disorderly several times while having dangerous blood sugar problems with her type 1 diabetes. (Travellers, so police won't listen.) Just stuck in a cell, to drift into a coma. Completely agree, OP.

To be clear, she'd not been drinking at all - doesn't drink as she finds it's bad for her sugars.

She just didn't respond how police wanted her to, due to being very ill, so gets arrested for it. It's happened more than once.

I'm sorry you have to deal with that 💐 I have a different chronic illness, mine was triggered by a virus, but I've had similar attitudes with healthcare workers and others trying to find a way to blame me for it. It's cruel and ignorant.

I think this is a great analogy.

I worked in a school where we had a number of diabetics and a couple of them were struggling to control symptoms. Fortunately our school nurse (this was an independent school) was ex Diabetes UK and we got high quality staff training on it.

She told me once her previous job was ringing schools to help educate staff after desperate parents had called the helpline.

I think we could do with more education as a society on T1 diabetes and some of the other autoimmune conditions such as coeliac. Even people just understanding "autoimmune" would be a start.

HCP could at least read the NHS info pages!

Exactly. I've got a medical condition that's very misunderstood and medical students are taught things that are out of date. A lot of people including myself with the condition all have a common symptom. Every doctor I've talked to tells me the two aren't related but can't tell me why I have this symptom.

One of the most bizarre and ignorant comments I once got (not related to the above) was to be told by ENT I can't be hearing impaired because I'm sight impaired. Audiology looked at my hearing tests and disagreed

Is it? My first thought is to wonder if it’s type 1 or 2 because the treatment is quite different.
Isn’t it true that the biggest cause of t2 is being overweight?

I wholeheartedly agree with this. I’m only 34, diagnosed type 1 at the age of 6. No one is perfect.

I try my best always, hospital staff don’t always believe it, ‘try harder’, ‘you need to look after yourself better’… ok but you do realise that a common stomach bug will most likely have me in DKA within a couple of days (and that’s after following all the rules!)

I’ve got numerous complications already, internal nerve damage to my bowel, dumping syndrome / gastroparesis, retina damage etc, and actually don’t get me started on the MH and burnout side of it all, it’s never ending - literally, never get a break, never able to switch your mind off.

I have a pump and CGM now but I beep and alarm constantly, I sound like a bloody washing machine, I hate it but what choice do I have, single Mum with not very good hypo awareness (resulting in previous seizures)

Sorry I’m moaning now! Yes, it’s crap, it’s horrible, it’s awful how the public and media sometimes don’t understand the differences between the Types and can be incorrectly judgemental.

I don’t even know what my point was, but I agree with you. It’s shit, could always be worse, though!

I get you xx

Yanbu. The only people who get it are other type ones. It should be a rule that you cannot be a endocrinologist without being type one yourself. Im sick of the doctors judging when they dont live with it and dont have a clue.

Yeah, its pretty poor. DH was told by a GP that at his age (mid 50s) his diabetes would be Type 2, not Type 1. He politely pointed out that might be true if he had just developed it, but he'd had it for 45+ years. Which was in his notes the GP was reading...

The misunderstandings around hypos and hypers being due to a lack of control.is tedious too. Things that can cause them:
Food (not just carbs)
Exercise
Alcohol
Stress
Housework
Driving
Sleep
Lack of sleep
Other illnesses
Life

When DD was pregnant she was given a target range of 4.3-5.8. With control that tight, you are inevitably going to tip into hypo fairly frequently but it is a sign of good control, not bad

Sympathies, OP. I have type 1 and also developed underactive thyroid during covid. It was a long, long time before I could get treatment for it; I had to pay privately for a blood test, and it's been really hard to lose the weight I've put on since. I also have Crohn's, have the full suite of autoimmune nonsense

@thing47 so true on the many things.

The biggest one for me is the temperature/weather, but sure tell me I need to try harder to control it. I’d bloody love to have the ability to control the outside temperature!

Type 1 is Schrödinger’s Disability. Too disabled to be trusted to know your own capabilities, not disabled enough to get any support.

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.

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.

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

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.

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.

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

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.

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.

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.

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

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.