Taken Off My Pump

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kitten

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Type 1
hello to all,
I apologise in advance for the incoherancy of the post. I am going to struggle very much to put into words what a very surreal and emotional experience for me. Last told I got told to attend an emergency clinic appointment and they put me on 2 injections a day and tried to take my pump away. I must say that all of this was done against my will and I told them so. They said that they physically wanted the pump back and would take me into a room and take it off me. I said that you can't do that. I said that I will take it off myself because I didn't know that you were putting me onto a new regieme and you should of explained it to me better. I know that it may seem that I should of protested more from the start but I did and I also felt extremely ill due to having ketones for what is now several days.
Anyway they promised to support me and gave me a clinic appointment for today. This morning my blood sugar was 20.8 and I had 6.2 ketones (blood meter ) and I asked them what to do about and they said nothing and also cancelled my clinic appointment for today! To be honest I am DISGUSTED at this. In the end I had to ring up nhs direct and tehy told me to have four units of novorapid and the gp fit me in specially. The gp is very mad because they didn't even tell me what insulin to take and when and so she has rung them up and I have now been told my new doses of novomix 30. I have had ketones all day which did go down to 0.9 at 2 o clock but at four o clock had gone back up to 1.1. I know that this is a small increase and that 1.1 is not too dangerous but last night they shot up from 0.4 to 5.7 so I am obviously concerned. I just wanted to try and vent here to you all. I t was very emotional and extremely distressing for me and so I apologise sincerely about the haphazard and emotional nature of this post.
hope everyone is okay today
lucy xxx
 
HI Lucy I really don't know what to say I am speechless..

Have they at all given you any reason why they'v decided to change you injections?

I would actually make a offical complaint concerning how they handled this situation, threatening you wil force etc..

If they took your pump away from you at clinic, they shouldn't just take it back, without ensuring that a change over to injections iscorrectly planned, as once the pump is disconnected, you've only got 2 hours worth of insulin, so either a planned injection routine should have been implemented to cover the time from the removal, to when you start injecting your novmix!

I would actually seek some legal advice as well...
 
Hello Lucy,

Really sorry to hear about your experience. There is certainly no need to apologise about your post, the treatment you describe sounds very traumatising and I expect everyone reading it can sympathise with you. It does seem quite extraordinary how you are being treated.

Have the people you have been attempting to discuss your difficulties with been the diabetic nurses at your clinic? Is it the same clinic that put you on the pump originally? If not then could you try contacting the staff at the original clinic? Or an alternative more sympathetic individual you can speak to at the clinic?

Ellie's advice looks quite sound to me. The only further suggestions I can suggest is that you request the people attempting to remove your pump to outline their decision, proposed treatment and the reasons for it in WRITING. You can then share this with both your GP and maybe get a second opinion from an alternative clinic that maybe your GP could recommend in say a neighbouring health area, preferably one that is more sympathetic towards pumping.

If you do get the reasons in writing you might also want to share them on the pump pages here as I am sure those of us who use pumps could help you provide a well reasoned counter case.

One final suggestion is that you could try temporarily coming partially off the pump, by which I mean maintaining the basal on the pump but delivering the bolus doses via a pen. This might help give you a clearer idea as to why your Blood Glucose is running so high and hence you are getting the ketones and then hopefully help you reduce it before returning to being back fully on the pump.
 
thankyou both so very very much for your replies.
I'm sorry if I seem sort of pathetic and actionless atm as tbh i just feel sort of scared and broken. I actually have the pump at my own house so that is a positive and I spoke to the gp today and she didn't really know what to do but she said that a second opinion could be sorted out if I wanted one but for now why not try what they say to attempt to sort my blood sugars out, which I did think was a fair point tobe honest. So far I have recorded everything possible, foods, insulins, sugars, ketones, fluids, everything. and i have also recorded what each person has said to me today. mainly because they have had so many contrasting opinions and this scares me as everything they promised me they have not done so i am just feeling so scared. do you think that i should do this plan : 1) try this regieme just to attempt to stabilise myself for a few weeks. If this doesnt happen then 2) get that pump right back on, reset all the basals to the same rate and start working at the pump right from scratch. how does that sound to othetr people? does it seem sensible? i am very emotional now so im very sorry once again xxxx
 
Hi Lucy.

Sorry to hear you're feeling scared and emotional. Never a good place to be, especially when trying to stabilise.

I would go with plan A. Try the basic injection regime theyve given you but try and find someone within your care team who can offer you day to day advice. It sounds like you need some guidance regarding adjusting the doses if you are high or low.
It's something that may need to be done with a full view of your history, so I'd have thought we can only offer general advice and opinions.
But it would be good to get regular updates on how your BGs are going and what you think might be happening. We could possibly advise on what sort of foods to eat if you're struggling on that. It would be a good time to stick to fairly slow release, albeit boring, foods while you try and get stabilised.
Stick with it. We'll try and support you as much as we can.

Rob
 
Rob thank you so much for the support. I have never done this type of regimen before so it is all completely new to me and I am starting from the very very scratch/basic with it if you see how I mean. I just wanna say that I love you guys for everything youve done for me so far 🙂 very good dietary advice aswell I feel. I havent had anything naughty like biscuits or cakes or whatever and I dont plan on doing. I will be back at 7pm with the results of my next 2 hourly check and to fill in what ive eaten today if thats alright?I am keeping a big and detailed log book 🙂
xx
 
Eh, they have to have some reasons for that. What are their reasons for taking you off the pump and onto twice daily. Twice daily is the worst regime out there quite frankly (don't shoot me down in flames those that use it, you are in the minority if it works). I doubt very much if you will get anywhere near decent controls on this regime. They should have put you on MDI unless they have very good reasons. What are those reasons? It makes no sense at all.

Ask what the reasons are? This is all very odd and then to leave you with the pump is even odder in my view !

:confused:
 
Lucy,

Yes the plan seems very reasonable provided you ensure you keep the pump yourself whilst you are implementing it. Finding some way to get a more stable control and stop the ketones appearing is probably your priority at the moment. At least your GP sounds as if she is doing her best to help you even if she is not a diabetic expert, that in itself is extremely useful for you.

I would also take at least a little time to recover from what has happened today so that you are able to make a less emotional assessment of what has happened and been said.

As Rob has said the people here can offer at least some advice on at least matters and would be happy to do so. If you look through some of the threads on the pump section you will also see that you are far from alone in having problems with pumps, I know that my first few months were very difficult and I felt I had excellent support from my clinic team, which you obviously don't seem to be getting. But please do not despair, these issues can be solved.

With regards to the pump, have you got access to a copy of the book Pumping Insulin by John Walsh? As has been said elsewhere, it is seen as a pumpers bible and although a little expensive it is a worthwhile investment for anyone on a pump.

Hope that helps. 😎
 
I really don't understand why the earth they've put you on novomix, as it's a totally different and old fashioned regime to MDI and nowhere as flexile!!

Problems with novomix, it combines both a background and Quick acting insulin in one solution for injecting... This means that you can't adjust dose to suit what you happen to be eating, nor are you able to take correction doses as you would with MDI regime...

The two injections do need to be timed injections, so that the basal is maintained correctly, shifting times will knock out the basal big time!

With this regime, you need to feed the insulin to a certain extent, so this will mean a snack between meals to avoid hypo's..

Also you have to be consistant with carb amounts, i.e, you choose 30g of carbs for breakfast the only thing you can change on a daily bases is what type of 30g you want to eat, same goes with the rest of your meals....

Going back to how they stopped your insulin pump use, if the get a bit snotty about putting down in writing the reasons why they changed your regime, then have a word with your doctor for a copy of the briefing letter sent from your clinic appointment (you'll entitled to request this) your consultant will have written to your GP, with details of regime change and hopefully should be an explaination of the consultants dicission..

A tip for future appointments at clinic, request that it's written in your medical records, that you want a copy of communication (the letter written from consultant to your GP of every appointment), then you get to know what your Consultant is saying to the GP about your medical treatment.. This is also your entitlement to request this information should in theory be a notice somewhere in clinic of any medical clinic explaining this...
 
Hi Kitten - just sending my love and support, feel disgusted with how you have been treated, it is shameful. You have my sympathy and rage!! Love, Karen.x
 
I'm utterly disgusted at how you;ve been treated with this hun, sending lots of hugs your way.
 
Dearest everyone, you all make some extremely excellent points. and I agree with you all about everything. The supposed reason for wanting me off my pump is because my hba1c is not at 6.5 %. I see the point of this kind of but I feel that putting me onto a more rigid regieme can't actually help with improving it? Because I feel that more rigidity is going to hinder and not particularly help? Please do not take offence to anyone that is reading this and using twice a day. I just think that if the option with the most flexibility that allows u the best control is working why would a more rigid option work? You know?
Sorry if this seems an emotional rant. Personally I was most disgusted at the comments to ignore the ketones and try to burn them off, like as in walk them off. You can't actually burn off ketones through exercise as it makes them lots worse? Am I right in saying that? It is what I was always told.
 
I am totally disgusted by your barbaric treatment Lucy, the person responsible for your treatment needs a reminder of their duty of care to you.
It sounds as though they have no idea of what's involved in your care at all, if they had, all their alledged options and changes should have been in place to enable smooth transition from your old regime, to the proposed new one.
It beggars belief that there has been no consultation with you and no letter outlining step by step what was proposed and how it was going to be achieved with minimal inconvenience to you too.
As well as recording all conversations, I would ask for written confirmation of all proposals and insist on a witness (independant and/or a family member) to accompany you when any discussions take place. It is inconceivable that they expect you to remember every little detail whilst being upset and out of your normal rythm and routine.
This makes me so angry, how can alledged health professionals be so inconsiderate to another human being?
Sorry Lucy rant over, please keep us up to date with proceedings, take care, regards Jimbo.
 
Hi Lucy i cant imagine how this must make you feel but i like flutterby wanted to say this is a dreadful way to treat a person, i send you hugs and support, hope things sort themselves out asap xx
 
Out of interest what is your HbA1c ?

Before I read your latest post - I had thought that possibly they thought that you had a faulty pump - what with all the issues you had been having with ketones. Though putting you on 2 injections a day seems bizarre. From the working environment you have described I can not see it fitting in with that at all.

On your ketones thread, all the BMs you mentioned where less than 10 and you were getting quite high ketones. I am wondering whether the length of time you were spending not eating 8 hours on a regular basis could be the cause of some of these ketones, as your body will have to rely on its stores to get you through. Though of course any time in that period (as you do not test) you may have been running high. I think you should speak to your manager referencing the DDA and get them to agree to them allowing you a lunch break - and the ability to test - so you can see what is actually happening during the day.

As to what happened - ensure in the notes you have written. Who asked you to go in, who you saw, who said what - what you said, whether the whole thing was witnessed by anyone (ie was your privacy respected), how it made you feel. How you left - not knowing what you were doing. How the cancellation of the clinic then impacted on you and how helpless/distressed it has left you feeling.

I can't be sure but I don't believe that they can force you to change treatment (which is what it sounds like) but that you have to agree. Have another word with your Dr and see if they can help with arranging better working conditions to help you monitor what is happening to you.

Hope you get everything in some kind of order soon.
 
Oh Kitten, this has given me a serious dose of potty mouth!!!! 😡 What happened to the old thing they used to teach docs, "First do no harm"?!!!

Like you say, if a pump isn't helping, how is 2 dinosaur-style jabs a day going to work?! (I was on 2 jabs a day for decades & it's DIRE!!!!). (apols to those for whom it actually does work of course!)

1. Where does this requirement to achieve an HbA1c of 6.5% come from? It's not in line with the nice guidelines (which are actually far more open than a mere HbA1c requirement!!) How long have they given you to achieve this anyway & what support to do this?! How far off are you, and have they actually tried to get things back on track? Do you feel they have adequately supported you in getting used to the pump?
2. Not briefing you on how to switch back on to injections of any sort was frankly negligent & could (has - ketones!!!) result in physical harm to you!!
3. It isn't just how they have changed the regime, it's how they have made you feel, esp threatening you with what would have amounted to assault. In my mind, this alone would merit a formal complaint.

Personally, as well as trying to stabilize levels etc as best you can, I would be contacting INPUT (pumpers org), PALS (Patient Advice & Liaison Service) & frankly given how they have been if they didn't start acting more professionally very soon indeed, my MP & the press!!! 😡

I am furious on your behalf!!! Sorry to rant, but I am so cross!

Sending you a big, big hug ((((((()))))))!!!!
 
dear everyone again thanks for all of your support, it means the world to me and many many hugs in return to you all 🙂
margie - just a quick point about work i dont always go for that long without a break. it is rather rare so i dont think that it is that all of the time but i dont know obviously. latest hba1c was 10.0 which is awful i know but it is much better than my previous 12.x's and above i feel. i just feel so lost and do not know where to begin.
thanks to you all again
please dont think that im being cold towards you all, i really am not meaning to be i just feel so numb and scared xxxx
 
kitten said:
latest hba1c was 10.0 which is awful i know but it is much better than my previous 12.x's and above i feel. i just feel so lost and do not know where to begin.
thanks to you all again
please dont think that im being cold towards you all, i really am not meaning to be i just feel so numb and scared xxxx
Click to expand...

Kitten, I so feel for you! I'm really surprised they haven't taken the view that 10 is an improvement on 12, or can't they count?! I really think getting in touch with your local PALS service would be a good place to start - they can advise you on options etc. Meanwhile I'd also be asking the GP for support getting a second opinion & badgering the blue bl**dy heck out of your diabetes team for day to day support to get your control right - call them every single day, read them your data (BG levels, carb intakes etc) & demand they advise you on what to do (as they seem to think 2 jabs will work, lets see if they can do it eh?!).

Meanwhile don't lose heart hun, we are here, right behind you & rooting for you - don't let the gits get you down. For what it's worth, I think they have treated you awfully.

Twitchy xxx
 
kitten said:
dear everyone again thanks for all of your support, it means the world to me and many many hugs in return to you all 🙂
margie - just a quick point about work i dont always go for that long without a break. it is rather rare so i dont think that it is that all of the time but i dont know obviously. latest hba1c was 10.0 which is awful i know but it is much better than my previous 12.x's and above i feel. i just feel so lost and do not know where to begin.
thanks to you all again
please dont think that im being cold towards you all, i really am not meaning to be i just feel so numb and scared xxxx
Click to expand...

I don't think you are being cold - you just don't know what way to turn.
Coming down from 12.x to 10 is a good step and seriously although you want lower levels bringing it down too quickly can cause problems in itself - just look at the other threads on here.

What your team should be doing (in my opinion) is congratulating you on the improvement and asking to see your log book and trying to help you find where your highs are and helping you tailor your regime to deal with them.
 
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