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Type 1 - Problems in Hospital?

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nelmes

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Has anyone else had problems in hospital controlling their diabetes? I have had type 1 for 40 years (since I was eight) and was recently admitted after breaking my leg. I requested a visit from the diabetic nurse and the dietician, as I knew I'd be in for at least a few days (was actually 8 days). No carbohydrate information was given on the meals available. I eventually had to ring the hospital switchboard from my mobile after 6 days to get them to visit me. I was prescribed a painkiller that affects blood sugar, with no advice given. One morning, my breakfast was left out of my reach by the staff delivering it, who refused to bring it closer. For my first op I was put on sliding scale with instructions for hourly testing (then it was done after 100 minutes - nearly missing one altogether, and the nurses objected to me self testing). Worst thing, was the orthopaedic consultant insisting that long acting insulin was ALWAYS discontinued for operations, despite the diabetic nurse and diabetic consultant saying that this shouldn't happen.

Is this normal for the NHS or are non diabetic specialists just totally ignorant of what is a very common condition?
 
To be honest it always seems a complete **** up when I'm in hospital first time when I was diagnosed few years back itu and hdu could not fault them every thing done well meds checks brill put down to general ward what a mess missed checks wrong food missed insulin the ward looked like something out of 1920 dirty place this last week in hospital the only thing I can coment badly was the food lable as diabetic no way a lot was high in sugar and carbs and I had no labels in my ward saying I was diabetic so tea girl kept offering me sugar in my coffee lol and I was bit confused about the medication I was staying or going on to because they kept changing it but I'm back on insulin now :(

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Sorry you had problems too Jimdog. Seems to be universal that acute care is exceptionally good, but chronic care is terrible. As far as food goes, I wouldn't mind being offered sugar with my tea - I just say 'no thanks'. My local hospital seems to have no idea of carbohydrate counting though. The only concession is labeling some desserts as 'unsuitable for diabetics' if they contain more than 60g (which is more than I would normally have for an entire meal), without saying how much is in anything else. 60g would also not be a problem if my sugar was low, and I wanted nothing else!!!
 
All hospitals now should be following the "Think glucose" protocols. these include allowing patients who are able, to manage their own diabetes. I would contact thee local PALS group and complain, asking why you were not allowed to do so. Leaving your breakfast out of reach is unaccfeptable. Someone needs to stir up your hospital.
I had a good go at ours on my husband's behalf a couple of years ago. It's still not perfect, but has definitely improved
Hana
 
Hi,
Yes I've had a lot of problems as well especially as I'm on a pump and they just don't know what it is and what to do with it. I was in for an emergency operation on the bottom of my back I tried explaining about my pump and that I would need a sliding scale if they wanted me to stop using my pump. They did put me on one but as I was going into theatre and had to change beds there wasn't a pole to put it on the nurse said she would get one but I guess they didn't bother. I woke up about 4 hours later in DKA with no sliding scale attached My blood glucose hadn't been tested all the way through the op and the nurses were really funny with me when I asked to check it. They treated me like a crazy person when in between throwing up I was begging to be connected to a sliding scale or get my pump back. I was only re connected when I went back to the ward. Luckily for me I managed to text a friend who was working as a Junior doctor in a ward close by he came to see me and sorted me out and complained to the rest of the staff which made them all nice as pie to me afterwards. So Instead of spending 2 nights in I had to spend a week.

Last November I was taken in as another emergency this time a ruptured ectopic I had a scan on the ward and it was all a bit of a major thing after that I had med students squeezing the fluid in both sides and everyone running about trying to get me prepped. I made a real point of explaing how my pump worked and explained to them that under no circumstances was I to be disconnected from it, the anethetist was in the room at the same time and I told her about checking my blood sugar and how to turn the basal up and down. Because of that my sugars stayed very stable all the way through and after throughout recovery even though I lost a lot of blood. I was on hourly checks for my blood sugar the nurses wanted to use their meter but I explained to them why I wanted to use mine (because of the finger pricker and keeping a reccord) and they were not that happy but I was firm and got my own way.

I think staff need a lot more training than what they have at present. In saying that as well sometimes I think it's appropriate for the patients to be a lot more vocal with their concerns governing their own treatment. If you don't correct somebody at the time they are doing something wrong there's less chance of them learning the right way to do things. The more people you can educate about the right way to do things the better the system works overall.
 
I have only ever been in hospital twice. The 1st time with DKA and I didn't really know what was going on. I didn't know what DKA was although they explained about sliding scale I didn't really understand. I was looked after really well with continual testing my blood. The 2nd time I had a total hip replacement and was in charge of my own testing, injecting and oral medication. I've been thoroughly satisfied with my treatment and the caring staff from both my hospital stays.
 
Hi All .

Have any of you heard of the Hospital Passport ? :)

These are available from IDDT [insulin dependent diabetes trust]
In these you can write in all your own specific medical and insulin requirements.
Plus you can state how you choose to have them adminstered too .

I have used one very successfully whilst in hospital , you may keep these by your own bed too.
Hospital trained staff can read it at your own request also .
They state your wishes clearly and you can fill in all your dietry food requirements in these .
Also any allergys, foods unsuitable , medical intolerances , insulin regimes etc.
Signs and behaviour of your hypo's too .

You do have choice to things whilst staying in a hospital and the Hospital Passport can successfully be used
to state your needs and choices 'specifically' .
It can be used as an education tool for the staff caring for you :thumbup:
Explains and tells the staff all about your needs and choices etc...

After using mine so successfully - I really would recommend them to all forum members during a hospital admission .
The fact you can address a lot of issues in one of them, this can prevent a lot of problems or misunderstanding .

Anna.
 
I had to have a major operation just over a year ago. After the op I was not allowed to sit up for 48 hours. I was also drugged up to the eyeballs! I was put on a sliding scale as I was unable to inject myself. I pressed the buzzer at around 3am one night. Told the nurse I felt unwell and she tested my sugars - 32.8. I was told somebody would be round to see me shortly. An hour later nobody had come and I felt awful. Pressed the buzzer again and was told that somebody would be around at 7am to administer medication. In the end I had to ask the woman in the bed next to me to help.

If I could I would have kept control of my own insulin. At the time I couldn't do much so this wasn't possible. I complained to the hospital. Nothing came of it but hopefully it will stop the same thig happening to someone else.

Em
Hello Em .

In the Hospital Passport there is a section to state and declare your own wish to keep 'own control' of insulin therapy .
I kept and used my own insulin therapy , also if having an 'op' a family member or relative can bring it into hospital
for you later and can assist you to keep to your own insulin therapy should you choose and wish .
[this is what I chose and it gets around the hospital staff taking away all your insulin and all self control ]

You can also keep your testing kit on you , even though they may insist on using the hospitals own test kit and record
from their own meter kit .
They did this with me , could use my own but they would only log readings from their own meter test kit data .

They do want patients to get active asap with doing things for themselves as soon as a patient is able .
Back on own insulin regime , eating, toileting normal, mobility ASAP...
The passport helps to state and declare your own choice wishes and acts as a guide for the hospital trained staff .

Hope this can help .
Anna.
 
Yea i havent got any faith in the NHS at all, its not about the money or staffing levels they just havent got a clue, from staff picking there nose before going round testing peoples sugars to the sliding scale jobs that makes my sugars worse, from being left for that long my ketones get worse after several experiences with the great NHS i quickly realise take your own stuff and do what you think. I could go on i havent been in hospital for years and i try everything to avoid them... but on the off chance if i do go in i make sure i have my own meter insulin and food... last time went in because i had ketones soon as i got there canula straight in they wanted me to go on a sliding scale big NO thankyou iam not doing it through past experience then doctor kindly looked at a form and said if your sugars are this amount take this amount of insulin not taking in any circumstances, again i refused used my own judgement and was out in around and hour or so, would of been in alot longer if would of listened to them, and the canula in my arm that i didnt need wasnt took out for a while because as i was being discharged i wasnt there resposibity the discharge team had to take it out ha ha its that crazy its becoming a joke.
 
Sometimes its the shear ignorance and talking around u to there colleagues and not to u realy winds me up and the nurses can be real bitches excuse the languge but when my iv falls out as tape does not like sticking to me doc says I need new 1 ok nurse will do it shortly when she comes I ask her to give me 5mins she storms off next doc comes back and tells me that I'd refused treatment *** I should have made complaint against her but all aside there are great consultants and nurses especially from Luton & dunstable icu head consultant and icu and hdu nurses saved my bacon as my time was nearly up then :shock:

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I live in Ireland so no experience of NHS. Our health service is in a deplorable state. But I imagine that no matter who runs things there will always be varying degrees of care on every ward of every hospital. I was once admitted for the winter vomiting bug. Very, very sick. I couldn't keep anything down but when food was being served 2 particular nurses kept pestering me to eat. When I kept refusing they said if I didn't want to look after myself then I should have stayed at home. They were convinced I would have hypo despite the elevated bs I had. Eventually another nurse came ton see what was going on and convinced them to leave me be. The following night at medicine time one of the nurses asked to see my novopen. ((I was still on syringes for long acting then) then she asked me to take it apart and put it back together. I didn't, have the energy to argue so I did. She was more than a little disappointed. I asked if I I could have introduced air into the vial doing this. (I know now that can't happen but I didn't then - I'd never had to "field strip" my pen before) She hadn't a clue. When I asked, in a very reasonable way what I should do she said they had seen plenty of my kind and my 'attitude' was not going to help me. I put in a new vial just in case for the morning. It would all have been a bad 'caring' experience but the fact that I was so sick and unable to deal with them made it horrendously upsetting. In every walk of life there are people who are a bit power hungry it is unfortunate to encounter them in a health care environment in particular when you may be weak and vulnerable. I have also encountered some truly wonderful doctors and nurses who have a real vocation for their profession. If only there werr more of them

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Well I have no faith in my Hospital at all ~ in fact im petrified of it. At 20 weeks pregnant was diagnosed Type 1 had to go into Hospital,when came off sliding scale a senior nurse gave me 100units of insulin instead of 10!! I ended up in HDU. There was a full enquiry with shocking results ~ she didnt know how to draw insulin or even inject it. I put off my last hospital app with Diabetic team because im just so nervous,I intend to make
 
Shelley, sounds like scary stuff :( I have to say every hospital experience I've ever had (not v many, and most pregnancy related) always eats away the trust I have for their care of my diabetes.

I just pray that if I need to be in hospital I'm in a fit state to look after my own bg levels.


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How to survive in hospital (T1):-
1) If there is any risk of the staff not allowing you to monitor your own diabetes then hide your blood testing kit (with plenty of strips) and take an extra pen & short acting insulin (hide also ) so that you can control your diabetes yourself. If put onto a sliding scale (which isn't working) then don't be afraid to give yourself more insulin. It will be apparent as your BS rises above 20 that the nurses do not have the authority to adjust sliding scale doses, the doctors are too busy and you will be sent into the operating theatre with dangerously high levels.
Since this happened to me I make it clear from the outset that I will manage my own diabetes and the nurses are usually happy with this if you are confident & assertive enough. After all it is one less job for them.
Fortunately most anaesthetists have grown up now and do not insist on stopping background insulin but I am willing to argue with anyone irrespective of rank. Stopping background insulin for a T1 diabetic just does not make sense.
2) Take plenty of food with you, I have to do this since as a T1 Coeliac I know from experience that if a meal is served with gluten containing carbohydrate, it will simply be removed and no substitute given. Wards also do not hold gluten free food for hypos (except pure glucose). All good for a very low carbs diet!
3) If you are managing your insulin yourself then do not inject until you see exactly what is on your plate!
4) If you are a healthy sort then also take in salad and fruit and encourage any regular visitors (if you are lucky enough to get them) to do the same. The NHS apparently have never heard of 5 a day
5) Don't be afraid to stand your ground, argue and refuse treatment that is wrong for your diabetes. You are the expert here, not the nurse barely out of college who has been taught from a textbook, or worse they know everything because their friend's grandma had diabetes. They don't care if you end of with a BS in the teens because they have forced too much glucose into you when you BS drops to 3.9. If you know it is wrong then the worst they can do is write 'refused treatment' in your notes.

I have had to learn over many years from experience in hospitals which were, on the whole, not bad. My first teacher was my mother who had two T1 diabetics under the age of 10 to fight for. When I was taken into hospital in a hypo that they could not revive me from when 34 weeks pregnant, she overruled the diabetic consultant, found the home number of my gynecologist (not sure how) and got her into hospital. She gave me an emergency caesarian since my daughters heart beat was slowing, she would have died otherwise.

I know it is difficult to stand up to the authority of the hospital staff but you have to protect yourself and understand that they are not always the experts.
 
I was admitted to hospital in march with 4 fractures to the ankle and a dislocated foot, plus long term degenerative axial and multiple :think: periferal osteo=arthritis. Right from the start I tried to insist on caring for my own diabetes. This did make waves with the bossy staff, but the ones who were there because they wanted to help their patients, rather than bully them, were delighted that i was taking control of myself,and even started to ask questions and some even took notes.
I dread to think what might have happened if I had been too ill to manage for myself,or not had a loving wife who kept my supplies of strips and medication coming. :think:
 
I've had Type One for 43 years now and have encountered varied treatment in hospital. I had two babies and two knee operational in teaching hospitals where the staff were well-informed and generally kind and caring. These occurred before the introduction of Nursing 2000, though I don't know if that affected the level of expertise and patient care amongst the nursing staff. I have also had a couple of operations in non-teaching hospitals and the nursing staff there were much less knowledgeable, though those who were prepared to listen to the patient were helpful.
As for the food, when I was first diagnosed, in 1969, there was a careful check on the relation between diet and food offered, with choices on a menu presented the day before. It was possible to keep snacks by the bed. This was so in the 70s and 80s too. There was not such a high awareness of the effects of various foods on insulin use then, though.
I can't help feeling that the current regimes are detrimental to the overall well being of patients and nurses alike, one hears of many nurses finding the reduced time available for proper care adversely affects the satisfaction they could get from a job well done. And I agree that there needs to be more training in diabetes, and a greater willingness to listen to the patient.
 
It's nearly 3 years since I was an inpatient at my local hospital, I insisted that I tested my own bg and administered my own insulin which the nurses and doctors were fine with, all they asked was that I told them what my bg was before food and how much insulin I'd given myself.

It would be helpful if the meals came with a carb value as you cannot weight the food yourself, having done the DAFNE course previously I managed to guess quite well and only went low the once during a 5 day stay.
 
Weeezer it was a horrible experience. My fingers were cut to shreds as after overdose for 8 hrs they tested my bloods every 15 mins then every 1/2 hr for 4 hrs. I was exhausted tearful confused and frightened. It happened on the weekend before my 20 week scan on the Monday. The only saving grace was the sonographer was adorable with me (i arrived looking a complete state as no one had bothered to help me change out of my pjs which were covered in lucozade and sick where they had tried to forcefeed me chocs s/w's lucozade the moment I got to HDU) and he kindly spent a bit longer with my husband and I showing us baby was ok after experience.

To this day I still feel angry a Snr Nurse someone I would have completely trusted had no idea what the hell she was doing and still went ahead and dis it anyway. I keep being told at least she realised mistake after 5 mins and I didnt go into a coma.

On another noteo if i went into hospital again I could say I didnt want to go on sliding scale?
 
Shelley...yes I think you can say you don't want to go on sliding scale, someone posted something about that, was it further up this thread?!?

Was all well in the end? Did baby do ok? what a lovely sonographer. Being t1 and pregnant is bad enough, being diagnosed with t1 is bad enough...being diagnosed whilst pregnant, whoa! Stress! Having that happen on top of it all, OMG.

I had a great pregnancy first time round, until the labour, no one had really explained the energy involved in labour would just suck up bg and despite eating & drinking loads, but got to the point in labour where animal instincts take over and couldn't consume a thing... ended up waiting and waiting (and waiting,) an pestering/begging/screaming to go on sliding scale- which resulted in massive 0.8 hypo (the waiting, whilst in active stage of labour, caused hypo). After passing out and them pouring glucose/water down my throat I threw up over everyone, then had zero energy left to push! No one seemed to know what to do with a diabetic in labour. Ridiculous!


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