Hospitals and managing type1

T

ThelateMrsH

Member
Relationship to Diabetes
Type 1
Firstly, username is because I am always late!
Now to the serious bit. I am interested in hearing how other type1 diabetics have coped in hospital. Here’s my tale of woe!!!
I am a diabetic type1 woman approaching 70. I have been diabetic for 56 years. I KNOW how to adjust my medication. (Humalog and Tresiba).
I came into hospital this weekend with a broken hip but my husband/carer gave them all the relevant details. Today I had my op and transferred wards. What a nightmare.
I self medicate, and staff are shown what I’m injecting.
Because of changing wards, I was given the meal of someone who had been discharged. It was all of 20 carbo’s. This on my ratio means 4units of insulin. But then they would not let me inject because this was lower than had been prescribed.
It took 2 hours before finally, as a compromise , someone could be persuaded to go and get a sandwich to bring the carbs up to 60 to match the 12unit’s prescribed by the doctors.
Is it just my husband and I, or is it the system?
It wouldn’t be so bad, but the diabetic nurse had contacted my husband earlier to clarify my usage.
 
Welcome @ThelateMrsH It sounds like the problem was the doctors. Why would they prescribe a dose if you vary your dose based on your carbs as most of us do? That’s madness!

Fortunately, I have a pump so that bamboozles them :rofl: But seriously, that isn’t good. You could have had a serious hypo. I’ve heard some horror stories. When you feel able, putting your comments in writing might help future Type 1s if not you.
 
Inka said:
Welcome @ThelateMrsH It sounds like the problem was the doctors. Why would they prescribe a dose if you vary your dose based on your carbs as most of us do? That’s madness!

Fortunately, I have a pump so that bamboozles them :rofl: But seriously, that isn’t good. You could have had a serious hypo. I’ve heard some horror stories. When you feel able, putting your comments in writing might help future Type 1s if not you.
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The doctors all say that the system does not allow for variable doses. The nurses say only the prescribed dosage can be given. We point out that her variable dosage is prescribed by her gp AND their own diabetic clinic. They respond, but now we are responsible for you and can only allow that set by the doctor on duty!! Viscous cycle.
Worked out our town has population of 107k, so based on national average of 8%,that means 8500 local Type1 diabetics. You think hospital could have sorted this issue by now!
 
Your story sounds just like mine - I broke my hip too!
My initial 4 weeks in a busy general hospital were ok, in fact the nurses kept telling me how grateful they were that I was managing my own insulin and I just told them how much I’d taken on each occasion

The trouble started when I transferred to an otherwise superb community hospital/rehab facility. I had to have a heated conversation with the staff to even be allowed to keep my in-use insulin with me (they wanted it in a locked cupboard in my room) and I was told that on no account should I do correction doses or adjust my basal without the doctor’s say-so. Difficult when said doctor wasn’t there 24/7. He seemed horrified that I hadn’t been prescribed a specified dose of basal (I wondered how he’d have felt as a GP being continually contacted by his T1 patients to get his approval for each adjustment?!)

With a highly sensible staff nurse as go-between we reached a compromise and it was acknowledged that I did actually know what I was doing. But she and several other staff did say that they’d never met anyone like me before, I was apparently the first diabetic patient they’d seen who actually engaged with and managed their condition.

We tend to believe that all HCPs should be aware and knowledgeable about Type 1, but in reality they encounter us very infrequently.
 
ThelateMrsH said:
The doctors all say that the system does not allow for variable doses. The nurses say only the prescribed dosage can be given. We point out that her variable dosage is prescribed by her gp AND their own diabetic clinic. They respond, but now we are responsible for you and can only allow that set by the doctor on duty!! Viscous cycle.
Worked out our town has population of 107k, so based on national average of 8%,that means 8500 local Type1 diabetics. You think hospital could have sorted this issue by now!
Click to expand...
With respect, that 8% is of people with diabetes, not of the population as a whole . There are only about 350,000 T1s in the whole of the UK!
 
ThelateMrsH said:
The doctors all say that the system does not allow for variable doses. The nurses say only the prescribed dosage can be given. We point out that her variable dosage is prescribed by her gp AND their own diabetic clinic. They respond, but now we are responsible for you and can only allow that set by the doctor on duty!! Viscous cycle.
Worked out our town has population of 107k, so based on national average of 8%,that means 8500 local Type1 diabetics. You think hospital could have sorted this issue by now!
Click to expand...

It was a while since I was last in hospital (having a baby) but I do remember them saying something like”So you accept responsibility for your own medication” or similar. I don’t remember if I signed anything but something was written in my notes because no-one fussed me after that.

I’m sure there was something from Diabetes U.K. about how diabetes should be managed in hospital. Basically, if able, the patient should be in charge of their own diabetes.

I’ll post it here if I find it.

I do find it weird they fuss about ‘prescribed dose’ yet are unconcerned if that prescribed dose does you harm! Similar happened to a friend a number of years ago. He had high blood sugar and needed a correction dose, but they refused to let him calculate it himself and gave him way too much insulin, leading to a nasty hypo.

Do you have the number of the Diabetes Dept? Could they put something brief in writing to the ward about the fact you should be in charge of your own doses and the risk any interference/set doses could have? Also, mention Diabetes U.K.!
 
So sorry to hear the difficulties that you have had in your hospital stay @ThelateMrsH . If you feel up to it you can help others by following this up. I suspect that in the past they dealt with many more who may well have been on fixed doses of mixed insulin, but with the developments of better insulins many more people will now be on Basal/bolus regime so their rules need changing.

I have been very fortunate when in hospital, for emergencies and for planned ops.
I was not in hospital whilst on injections and like others I am on a pump which means that they cannot be the ones dealing with any doses since I am delivering them by my pump. Also they cannot take it off me and lock it away in a cupboard. I just tell them what I have done. I did have to declare that I was taking responsibility for managing my T1 but this was what was expected.

With sensors it has taken them a few years to accept the sensor readings in place of a BG. I had one occasion when they had agreed to use the sensor readings overnight which they could see without waking me up (in the days of using a Libre with the reader) . However one HCP woke me up could I was lying on my wrist band and he wanted to check that!!! I was unlikely to have changed places since he had done the reading 2 hours before!!! With my closed loop system now they are very happy to let the system do the checking and we just agree what to do if alarms go off on my pump in the night -wake me.
 
ThelateMrsH said:
Worked out our town has population of 107k, so based on national average of 8%,that means 8500 local Type1 diabetics.
Click to expand...
Thats vastly over estimated. It’s 8% of diabetics have t1 not 8% of the population.
 
I have been very fortunate dealing with hospitals when it comes to my T1D care.I have only been to two since my diagnosis and both have been great and completely understanding..especially when it comes to letting me administer my own insulin and let me do my own blood sugars...oh and by the way welcome to the forum @TheIateMrsH.
 
Sounds like the arguments I had when I broke my kneecap - insisted on putting me on sliding scale for the op. What rate you sticking it on I asked? 3u per hour. WHAAAAAAT???? bearing in mind my pump TDD basal at the time was 10.7u ........ and when I had my hysterectomy a few years earlier, the anaesthetist had decided on 0.5u/hr and I did very OK on it. You do need extra cos of the trauma of surgery but to my mind, No Way Jose would you EVER increase your normal rate per hour by such ridiculously huge amounts - and never suddenly anyway!

I have obviously lived to tell the tale, as have you - but it is ridiculous. The op was a success, which I sincerely hope yours has been too - but since neither of us was expecting this sort of crap - damn good job we're both able to remonstrate verbally ain't it !! :care::care::care:
 
I wouldn't take kindly to anyone trying to take my insulin away from me...
 
JJay said:
With respect, that 8% is of people with diabetes, not of the population as a whole . There are only about 350,000 T1s in the whole of the UK!
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I stand corrected. However, my point is I am not the only type1 diabetic in the area. Both one of my brothers, and my sisters daughter are both type1, (and they say it doesn’t run in families!!).
 
Inka said:
It was a while since I was last in hospital (having a baby) but I do remember them saying something like”So you accept responsibility for your own medication” or similar. I don’t remember if I signed anything but something was written in my notes because no-one fussed me after that.

I’m sure there was something from Diabetes U.K. about how diabetes should be managed in hospital. Basically, if able, the patient should be in charge of their own diabetes.

I’ll post it here if I find it.

I do find it weird they fuss about ‘prescribed dose’ yet are unconcerned if that prescribed dose does you harm! Similar happened to a friend a number of years ago. He had high blood sugar and needed a correction dose, but they refused to let him calculate it himself and gave him way too much insulin, leading to a nasty hypo.

Do you have the number of the Diabetes Dept? Could they put something brief in writing to the ward about the fact you should be in charge of your own doses and the risk any interference/set doses could have? Also, mention Diabetes U.K.!
Click to expand...
My husband spent a couple of hours at the hospital today, and basically forced departments to listen to each other. Finally they agreed to let me self medicate, under supervision!! Result (of sorts)!
 
ThelateMrsH said:
Both one of my brothers, and my sisters daughter are both type1, (and they say it doesn’t run in families!!).
Click to expand...
No one says T1 doesn’t run in families. See the Diabetes UK explanation of T1 which says it can run in families.

What causes type 1 diabetes?

Causes of type 1 diabetes It’s normal to wonder if something you’ve done could have caused your type 1 diabetes – or a child’s type 1 diabetes. But there’s nothing you could have done to prevent it.
www.diabetes.org.uk www.diabetes.org.uk
 
Interesting discussion re families. I think the answer is both. The statistic is that something like 90% of newly diagnosed Type 1s have no close family member with it. That leaves a small percentage who do.
 
Lucyr said:
No one says T1 doesn’t run in families. See the Diabetes UK explanation of T1 which says it can run in families.

What causes type 1 diabetes?

Causes of type 1 diabetes It’s normal to wonder if something you’ve done could have caused your type 1 diabetes – or a child’s type 1 diabetes. But there’s nothing you could have done to prevent it.
www.diabetes.org.uk www.diabetes.org.uk
Click to expand...
I am sorry! Mis-typed. This should have read “said”, not “say”! I became type1 in 1968. When the headmaster at my school was told, he said I was the first diabetic they’d had, and they’d probably never have another! By the time my youngest brother attended that school, there were 3 in his year alone!
The oddity in our family is there are three type1s. Myself and my youngest brother. My sister is not diabetic, but her daughter is.
I know thinking and knowledge has greatly increased, but those early experiences tend to affect our language.
 
General hospital staff don’t seem to have much clue about diabetes, especially about the more modern insulin regimes. I do understand that they have a duty of care to their patients, but how do they think we manage at home?! We’ve had pretty mixed experiences, when my mum broke her hip a few years ago one doctor apparently decided that she shouldn’t take her Levemir in the evening, no idea what his reasoning was but the nurses wouldn’t let mum change it even when she kept trying to explain what a bad idea that was. Then all the doctors had gone home and they couldn’t do anything. With the result that her blood sugar was (very predictably to us) in the 30s the next morning and there was then a mad panic getting her on an insulin drip! On another hospital stay she was treated a bit better, I think they eventually agreed to let her manage it herself as long as she told them what she was doing. She was complaining to me that she kept waking up in the morning low and didn’t know why, I suggested reducing her basal by a unit, which she did - and woke up on a perfect 6 the next morning so clearly it worked. Nurse was not happy that she’d changed the dose without asking first - although softened when she got the explanation.

When my daughter was in hospital having her appendix out when she was 7, they put her on a sliding scale for the operation itself, and the nurses were under instruction to change it to x per hour if blood sugar went over a certain amount and to y per hour if blood sugar went under a certain amount; all night they were having to come and change it back and forth, which would suggest to me that it should have been set somewhere in between the two rates but there was no doctor around to issue different instructions so they had to stick with it. My daughter didn’t have any sensors in those days either so her fingers were like pincushions! I was most relieved when we were allowed to put her back on her own pump, I could take charge then because they had no clue how it worked. Hospital diabetes team were keeping a close check on her then though so I guess they might have had some influence on pump usage!
 
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