Taken Off My Pump

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Lucy, I am absolutely appalled at the way you have been treated! I don't mean this flippantly, but you didn't acccidentally get diverted to the BBC Casualty set by mistake did you? Because such incompetence would certainly fit in with one of their preposterous storylines!

Very, very sorry you have been made to feel this way. You don't need any medical training to see that this has been dreadfully handled whatever their intentions may have been. I would definitely contact PALS:

http://www.pals.nhs.uk/cmsContentView.aspx?Itemid=944

Try to stay calm and listen to those on your healthcare team that you trust - anyone else needs to earn your trust by explaining fully why they are taking the actions they are taking.
 
Northerner that comment made me laugh so much 🙂
I do feel like im in casualty or some ridiculous drama! hehe so good to smile 🙂
the problem is that i dont trust anyone on the team now since they all kind of did this to me and so i dont really trust them and i think that they should earn it by explaining things to me and by writing down what they are telling me to do so that i can refer back to it at a later date and say oh look this is what u said last time and now ur saying the opposite u fool :O
and this is no word of a lie but we were talking about doses and the consultant couldnt add up 24.45 and 9, no joke whatsoever xxx
 
I have no words to describe how barbaric this sounds, but I do think you should contact John Davis at INPUT - I feel very sure that he will be able to help you keep your pump.🙂

If there was a criteria to have a hba1c of 6.5% or lower when on the pump - then there would be a lot of people giving them back - so its a load of rubbish. Do not do any exercise to burn ketones off - it will make them a lot worse. Drink lots and lots of water and give yourself a correction dose if your BG is high. I hope you get this sorted out and do try not to worry - I am sure that you will get the help you need very soon.🙂Bev
 
Hey lucy I can't give you any advice as not on a pump myself, but am sending lots of hugs 🙂 very confused about the whole ketone thing - mine were sky high when i was told to go to the hospital and they didn't want me to leave until they'd dropped :confused:

I hope you get the advice/support you need from your team soon xxx
 
thanks once again to all trust me your hugs are truly appreciated and reciprocated 🙂
im confused by this whole thing and feel it is a silly mess. I don't really want to give the pump back as I haven't been seen by anyone regarding it since last April because that DSN has been off work unwell ever since. I did see one person about it after this period but she said okay yeah just do whatever. So NO advice there. She sat for about half an hour first telling me how great she is and how im so priviledged to have an appointment with her, so as you can tell that was no real benefit! the consultant says that i wont ever be suited to a pump but i will be very suited to types of insulin therapy that are almost identical to a pump, to this i replied so why not the pump? if they are supposedly the same why not the pump? and she just scowled at me. i know it sounds confrontational of me but i honestly wasnt, just think it was the silliest comment ever tbh! love to you all my diabetes mon amis xxx
 
Lucy,

Contact those that has been suggested, write out a script/notes of what you want to say, key points such as how many visits you've had for support, types of support provided and offered etc.. So you can refer to..

As to your ketone problem, my friend came up with a notion, do you use novorapid in the pump?

As it's been know that some users have had problems with ketones with little/no explinations similar to your experience, and it's been resolved by changing to a different brand of insulin! It may be worth discussing this with either your GP or care team..

No need to apologise to us, we all know that you are feeling very bewildered etc after your experince and we would feel exactly the same if we were in your position ((((((hugs)))
 
Ellie thats such a fantastic suggestion! I did indeed use novoropaid. see this is the kind of thinking that i need. but im on these darn novomix's at the moment. levels have been awful still. i am going to contact all of those relevant and do what we have said. is it okay to keep you all posted about everything? thanks so much for everything everyone, seriously i would of had a break down without yas all xxxx
 
Hi Lucy

Just before I clear off to bed.

Have you tried adjusting your insulin dose when you had high BGs ?

I'm guessing you know the basic idea that if you test your BG and it's high, that you can raise your insulin (whichever one is acting at the time) so that it brings the BG down and you can then work out your ratios to what youre eating.

Could you give us an idea of what your typical diet is in a day / ie. food + quantities.

And how you were adjusting your pump doses to cover this. It may be a fairly straightforward solution that you can go back to your GP and suggest, but obviously don't do anything without checking with your GP or DSN first.

I think you may be better trying to focus on what is best for you to do rather than getting upset all over again about what's happened.

Hope others can manage to steer you in the right direction.

Rob
 
Kitten. I am so sorry for all of the trouble aand upset these people are putting you through. Which diabetes centre do you attend? If you don't want to print which centre you use please pm me with it. I would be very interested to see who these people actually work for. Try and stay calm and don't forget to document all that has been said and done to you today. Take care.😡
 
That's outrageous!!!!

Sorry, I've only just seen this thread, read all of it. I can't give you any more advise already given.

Bad enough as it is them wanting to take the pump off you, why on earth have they put you on a mix?? I'm just wondering what you were on before you had the pump and how long you actually had the pump. If they think you'll improve your Hba1C on a mix they live in cloud cockoo land.(Apologies to the ones who are on mix and have good a1Cs).

As others have said coming down from 12 to 10 is good. I'd be more concerned if it had gone UP. What do they expect, miracles??? For a start it takes quite a while to adjust to a new regime, which means the numbers will be higher than "allowed". I can only repeat what others have already said, but not being 6.5 is NO reason to have the pump removed.

Big hug from me too, and I keep my fingers crossed that this will all be sorted in a positive way for you (even if it means changing hospital).
 
thanks so so so so much to everyone. im really sorry that this is being posted so late in the day as i did try to put an update on at 9am but my laptop decided to run out of battery and crash, pathetic i know but computers are not precisely my thing :(
spiritfree i will pm u when i figure out how to honey 🙂
i got a call this morning from the pump stealers asking about blood sugars and saying that i should take my pump back tomorrow and they wil send it off for tests. i said that i want to go back on my pump and she said that she doesnt think that this will be a problem. this is a good sign i know but i dont actually trust them and think that they are just saying this so that they can jhave my pump back and i wont be able to get another one. if icant get another one on the nhs then i am going to fundraise with cake stalls and fetes etc in ordeer to be able to afford one. i know that this sounds radical but i really dont see the advantage of mixes, ive not been below 15.7 since being on them and yeah i had problems with my pump and often had highs but not always and did have some good numbers and some awfully low lows.
Monica 🙂 i used to be on basal bolus on injections with novorapid and levermir so i think that this switch to mixees is very odd. asi have never been on mixes before in my life.
 
kitten said:
thanks once again to all trust me your hugs are truly appreciated and reciprocated 🙂
im confused by this whole thing and feel it is a silly mess. I don't really want to give the pump back as I haven't been seen by anyone regarding it since last April because that DSN has been off work unwell ever since. I did see one person about it after this period but she said okay yeah just do whatever. So NO advice there. She sat for about half an hour first telling me how great she is and how im so priviledged to have an appointment with her, so as you can tell that was no real benefit! the consultant says that i wont ever be suited to a pump but i will be very suited to types of insulin therapy that are almost identical to a pump, to this i replied so why not the pump? if they are supposedly the same why not the pump? and she just scowled at me. i know it sounds confrontational of me but i honestly wasnt, just think it was the silliest comment ever tbh! love to you all my diabetes mon amis xxx
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Hi Kitten

I tried to do a little research and it seems that Dr can remove pump therapy if there is not a sustained improvement in BMs. Given your improvement I can't see that being a valid reason - or if they are using that as an argument you have the evidence against it.

The other thing is how can they say you are not suitable to pump therapy when you have been given no support or help and have had to struggle with it all and make your own decisions, the consultant may not know you have had no advice and assume that you have been given a lot of support.

Hope you are feeling calmer today and have managed to get some advice.
 
kitten said:
Monica 🙂 i used to be on basal bolus on injections with novorapid and levermir so i think that this switch to mixees is very odd. asi have never been on mixes before in my life.
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Fools, then they should have put you back on that at least!!
 
kitten said:
... i got a call this morning from the pump stealers asking about blood sugars and saying that i should take my pump back tomorrow and they wil send it off for tests. i said that i want to go back on my pump and she said that she doesnt think that this will be a problem. this is a good sign i know but i dont actually trust them and think that they are just saying this so that they can jhave my pump back and i wont be able to get another one. ...
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Seriously Lucy, I would recommend that before you hand it back get them to state that it will be returned to you in writing and have it signed by the person who has said it will be returned (a DSN?) and someone else who has authority (maybe someone here who knows the usual clinic hierarchy better than me can suggest someone) alongside a job title and with the hospital stamp. If nothing else this should make them think twice about not offering to return it. Also only return the pump itself, none of the documentation etc.

Also ensure they have given you proper guidelines on what your treatment should be for transferring off the pump and to injections, preferably MDI (four injections), as it is not straightforward. If they do want to just get it repaired they should be happy for you to keep it for a bit longer until this is all prepared and you are happy, or least happier, with what they have given you.

Hope your Ketones are a lot lower today. 😎
 
I still don't get this, I find it totally bizarre and so unprofessional let alone inhumane!

Just a quick thing to point out, you are an adult and you can tell them what you want and they have to help you. Why did you agree to go on to mixes, bit confused about that. What is the reason they gave you about giving the pump back? Are they saying that there is something wrong with the pump and that is why they have to send it back? If that is the case and there is something wrong with the pump then the pump company will give you a replacement, there is no need to go permanently back on injections. I will be surprised if your hospital don't know this.


If there is a problem with you pump you could ring the pump company yourself and say what the problem is, then you can send it to them, they will provide a box or envelope and you can pop it in and post it back. They can also then send you a replacement within 24 hours so only need to be on injections for that short a period.

Why have they told you to take the pump off and why are you on mixes. None of this makes any sense at all. I have never come across a team that callous that will take a pump off without a damned good reason. If they haven't given you one, make them give you one and if they won't then write a formal complaint letter following the hospital's complaints procedure. This is bordering on some sort of abuse.
 
kitten said:
i got a call this morning from the pump stealers asking about blood sugars and saying that i should take my pump back tomorrow and they wil send it off for tests. i said that i want to go back on my pump and she said that she doesnt think that this will be a problem. this is a good sign i know but i dont actually trust them and think that they are just saying this so that they can jhave my pump back and i wont be able to get another one.
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Ok
Did this person say who they were they could be an admin person who is making assumptions.
What tests on the pump - when was it decided that the pump had issues - seeing as you have had no advice or help. The only thing I can imagine them getting from the pump is some kind of information on your insulin usage and possibly your BMs but I don't know if your pump keeps a record of such things.

Could you speak with your GP and ask the GP to call the consultant with you present and get them to thrash out the issues between them ?
 
Kitten. Just click on my name, in previous post, and click on send pm,send private message.
 
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