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Accused of insulin fiddling?

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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eyeko

Member
Relationship to Diabetes
Type 1
Hey,
Over the course of the past few months I have been accused of purposely fiddling my insulin in order to make myself ill and gain attention. This was not the case at all. I don't want to bore you all with going into the precise details of it at the minute but I would be extremely keen to hear from any of you that have gone through a similar situation. This sort of accusation is a terrible one when it isn't true at all. In my case it was a slanderous lie that has left me feeling desperate, upset, panicked and shocked. It has affected everyone in my life that matters to me as they have all also been implicated as liars. I had a bit of an idea the other day to set up some form of support group/network to help others going through a similar experience. It was a bit of a fleeting idea and one which I don't know whether to go through with or not. Partly because I don't really know how to go about it lol. I was thinking that maybe I could set up a website to start with? Anyway, I would just be really grateful if people could comment and say whether they've been through a similar experience - no need to leave details yet if you don't want to. And whether or not they feel that they would be interested in a support group/network of some kind. I also want to note that I am not looking down on anyone that may of purposely fiddled their insulin, I'm just saying that it was not what was happening at all in my case. I feel that problems relating to insulin of any nature are all equally serious and each and every diabetic and their family, friends and partners should be treated with equal respect and given the advice, guidance and help that they need to the best of their diabetes team ability, and if their diabetes team can not provide for their needs they should be referred to a team or organisation that can. No one should have to suffer. I hope that made sense. Please, please leave messages to let me know what you all think. If you think it's a silly idea please, please feel free to let me know that aswell lol. Thanks a lot and best wishes to all eyeko xx
 
Hi Eyeko,

Fortunately I have never been accused of things that are similar to what you have. Thorough ignorance is not pleasant in whatever form it is encountered. If people I know have said things like that to me I've immediately set them straight. Putting people in the know is a very good thing to do, especially in the case that you describe. We cannot get the doses smack on. We can only do our best to emulate the healthy and fully functioning pancreas, we can and do make mistakes. Personally I don't seek attention nor do I want pity if one of my choices regarding insulin doses has not done what I wanted it to. I see it as a learning experience more than anything else.

Tom H
 
Thanks for the reply and I'm with you on your approach. However it is my consultant that says I fiddle. She is not a particularly good consultant and even now after four years is only just telling me things that I should of known a lot time ago - like the correct protocol for treating hypos, correction ratios for correction doses, sick day rules, when to test for ketones and what to do about it. The thing that has made the accusation so terrible is that has sent secret letters behind my back saying that I do fiddle, for example to my school. I am in my last year of school and I am 16. My school however, who know me very well have said what rubbish and shredded their copy of the letter immediately upon receiveing it. Other people on the board seem to describe that when their sugars aren't going to plan their doctors will suggest new amounts or medication changes. This would be wonderful, in my case I get "you fiddle!" and secret letters and accusations. This is what has made it such a serious accusation.
 
I'm with you on your approach to not wanting pity 100%. I personally agree and take the stance that,well if my dose went wrong I must accept responsibility because I administered it and it is my duty to make a note of it and see what I can do differently next time.
 
eyeko said:
Thanks for the reply and I'm with you on your approach. However it is my consultant that says I fiddle. She is not a particularly good consultant and even now after four years is only just telling me things that I should of known a lot time ago - like the correct protocol for treating hypos, correction ratios for correction doses, sick day rules, when to test for ketones and what to do about it. The thing that has made the accusation so terrible is that has sent secret letters behind my back saying that I do fiddle, for example to my school. I am in my last year of school and I am 16. My school however, who know me very well have said what rubbish and shredded their copy of the letter immediately upon receiveing it. Other people on the board seem to describe that when their sugars aren't going to plan their doctors will suggest new amounts or medication changes. This would be wonderful, in my case I get "you fiddle!" and secret letters and accusations. This is what has made it such a serious accusation.
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OMG this is awful! what a terrible doctor. I'm glad the staff at your school are good enough to actually get to know you though, usually they aren't much use either.

All I can say is PLEASE change consultants. Why haven't you already?
 
Well, the consultant change problem is that my notes state that I'm a fiddler. Signed and confirmed by current consultant, so anyone new will get to see that before me. The letter got sent out to reams of people and I only got a copy because I rang up the consultants secretary and requested one. I want to move up to an adult clinic as swiftly as possible but I also need to be sure that these horrible accusations aren't going to go with me. I'm so truly grateful to the school because without them I wouldn't of had the confidence to try and do anything about the accusations because to be honest I feel quite worn down by it emotionally. Now I'm not saying that for sympathy I'm just trying to explain why I was hesitant to do anything. I entered the formal hospital complaints process yesterday and thats making me feel a bit better about the whole thing but inside I'm still hurt and scared. Thanks a lot for your reply Katie, you've really confirmed it for me in my mind that I need a second opinion pronto. xx
 
eyeko said:
Thanks a lot for your reply Katie, you've really confirmed it for me in my mind that I need a second opinion pronto. xx
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Yeah I really think you should change consultants. Even if that letter goes with you, im sure that they will talk to you and make up their own mind 🙂
 
Sorry to hear that you have been going through this. I wonder if the Dr is frustrated when you have wacky blood sugars and because she can't fix it, she is putting the repsonsibility onto you. It must be you fiddling your insulin nothing to do with her lack of ability as a Dr.

I haven't ever been accused of messing with insulin, but I have been asked. I was addmitted with a bad hypo end of last year and was asked if I had taken a deliberate overdose. I wasn't offended at the time because it was a fair question. I am known to have taken overdoses (never of insulin though) in the past, so I think they had to ask.

How are your family reacting are they involved in your care? I hope that they believe you and can support you.

thankyou Tom for your post
 
I feel it was a fair question at first. It is one of lifes possibilities I'm not trying to get away from that but it's just that they never asked me, they called us all into clinic and made me leave the room and then told my mum and dad that I was fiddling. My mum and dad have told me about what went on and they said no way that isn't happening. That was it really, accusation made, consultants mind made up. A lot of little things have happened over the past few months regarding this whole diabetes nightmare and for me they've been upsetting. For example on one of the occasions that I was hospitalised with diabetes problems I had my blood sugar meter taken off me. I understand totally and have no problem whatsoever with the hospital using their own meters, because I know it's a legality and thats fine but when they took my meter off me I was pretty upset. I even asked could they not just leave it with me and my mum take it home when she came up to see me later that day. Nope. It was taken away. Then when my mum tried to asked the nursing staff for it back she was refused and even told that she didn't know where it was.This is all despite the fact that I had seen the meter several times up to this point because I had to have several nurses present and have all my injections, checked dialled and administered by them, with no input from me during my stay and at each injection we would go into a little treatment room and all my insulin and meter was kept in a box there. To be honest, my treatment on that particular admission was pretty bad. If they had of asked, as a genuine open question if I was fiddling, then this would be fine. In fact it would of been what they should of done, just to check. But no it was just an accusation and written down and made all formal. That is what I disagree with and find so dangerous because they've just labelled me. They actually threatened my parents that SENCO, educational needs and a CAMHS mental health care worker would be involved because I have mental problems and such forth and that is what is causing me to fiddle. Not true not true in my case. During the stay I just mentioned and up untill around about a week ago when I told them that I had found out about the letter and was going to be taking it further I was constantly questioned. And I don't mean open ended fair enough check list questions. I mean you must absolutely hate school i can understand why? isnt that journey you make to school awful? i can understand why you wouldnt want to go. and things of this nature, that were extremely close ended questions. Its been an ordeal for me personally. Hope that made some sense and didn't seem too super rantish lol. Thanks a lot for all replies and support xx
 
Goodness eyeko, this is making me seethe!!!😡😡😡

What ignorant, insensitive people. I'm really sorry you're having to go through this.Whatever their suspicions, this is certainly not the way to approach it. It seems to me that they seem to have overlooked the fact that you are a fellow human being dealing with a difficult and often fickle condition, that deserves to be treated with respect and encouragement, not bullied and accused.

I do hope that things improve, and that you get a health care team that lives up to their title. Have courage, and try and stay positive!
 
Just wondering how your blood sugars were when you were in hospital?
I think it was bad that the nurses injected you, I think it was ok that checked your doses-coz they had to sign and were responsible for the insulin, but really they should have let you inject yourself. Was this a children or adult ward?

I think if you went to a new consultant at a different hospital then you could start again. your notes wouldn't be transferred and if your GP didn't write anything on your referal letter the they wouldn't have to know about the accusations.

I think it's perfectly ok to rant, it's a horrible situation to be in.
 
They were high when I was in hospital, both times. The comments and questions we asked them at the end of both my stays were totally ignored. Especially this last time when there was no consultant available and so I had to leave with no answers whatsoever. They did promise to get one to call, but no such call was ever made and I did ring up and ask the diabetes office if the consultant was back (he had been ill on the day of me going home), and was informed that he had been back for two days. It was a childrens ward because I haven't yet moved to adult clinic, during my second stay they let me state the doses I required and inject myself, just under supervision. I have no problem whatsoever with supervision but 2 or 3 nurses is not pleasant. This may seem like I'm just being super moany but at the time the whole situation was terrfying. (can't spell sorry!)So we still have very few answers. The diabetes team have also started to twist anything that I say between themselves. For example I received a call yesterday from one of the DSN's in the team saying that he had come to look for me at school because I had told another DSN that I needed urgent psycological care. I wasn't at school due to illness and I had mentioned nothing whatsoever about psycology or councelling to the other DSN. It's a scary situation to be in becuase everything is being twisted and turned against me one way or another. Another problem with being hospitalised was that none of the ward staff knew anything about diabetes and so getting any further advice was out of the question because they simply couldn't provide it. I am most definately going to change consultants when I can but I'm currently needing to sort out the two that I'm under and also sort out all of these secret letters with the big lies in them because their on record everywhere including the GP's. I just feel really scared and angry about the whole situation if I'm honest because I know that over the years I haven't had adequate care or advice. It's just left me with a huge yearning to be proactive and try to do something positive regarding diabetes because the only things that have ever happened to me regarding it have been very negative, dating way back to my diagnosis when I was shouted at by a nurse that I was now not normal and never would be again. Thanks for the support.

Thanks also to northerner for your support. I'm just still wondering about starting some form of self help group or something to provide information about diabetes and more knowledge about how to go about changing consultants and what to do if you want to complain or something. And more information regarding different types of insulin and different monitoring devices because I had to find all this out from diabetes UK and none of this info came from my diabetes team. Just wondering if setting up a little group aiming to provide this would be good or not.
 
They should have been able to see that when all the control was taken away from you when in hospital your blood sugars were still high, so surely that proved that you aren't fiddling your insulin. If you were, then when you were doing everything under supervison then blood sugars should have been well controlled.

I think a change of team is needed ASAP, i'm sure you can still fight this even though not under their care. Have you been to PALS?
 
eyeko go to the pals service and make a complaint regarding a) the consultant b) the treatment you had in regards to hospital stay and c) the way you feel the whole diabetes team have treated you . also i would add a complaint regarding breach of confidentiality regarding the letter sent to school etc as this is a private health matter that does not concern your school and the only person who should have got this letter is your local gp. if you dont get any help from the pals service then take it to the GMC (general medical council) as they are the governing body regarding your consultant. also get your local mp involved and see if this is an isolated case with this consultant.
 
Eyeko, with your parents you need to get this sorted.
You have the legal right to have those damming untrue letters removed from your files. You also need to sit down with your parents and write a letter of complaint regarding your treatment.
Pointing out that you have been under consultant X for 4 years and have so far not been educated regarding your diabetes. IE sick day rules correction factors. Also explain the degrading treatment you received in hospital, pointing out the theft of your meter. (You are allowed to self medicate in hospital).
I would also not mind betting that the consultant can not devulge your medical history made up or otherwise to all and sundry. (School)
Please also contact PALS with your complaints and seek advice.
You are also entitled to see your medical records and have them corrected.

Top of the list though is go to your GP and ask to be moved to another consultant. This is also your legal right.
Please also look up the patient charter and see what your rights are too.
Sue.
 
Thanks 🙂 I tried to ring PALS the other day and there was no answer lol! I have rung up the hospital though and told them I wish to make a complaint etc. and they were in the process of typing up my complaints and then getting someone higher than themselves to call me back. I'm still waiting on this call and think that it could also be wise to write a letter of complaints aswell? Am I right in thinking that they weren't allowed to take my meter off me because it's my personal property? I have also been told by some close friends of my mothers that the closed questioning which I received is a violation of my rights. I'm not sure about this and wondering what everyone else thinks? They work in a primary school and have been told never to closely question children. I know that it is forbidden by law to take any further action on responses that children have given to close ended questions.
I was thinking about writing to the MP or the paper. I think the MP will be better. What do you think I should say? I was thinking of including a description of whats gone on but is there any way to find out if anyone else has made any complaints about my consultant?
Thanks again for support and further advice. Sorry for all the questions but I just want to be sure that I'm right in what I say before I go storming in saying it all and get labelled as a stroppy little mare lol. Thanks very very much xx
 
Eyeko, due to your age I suspect your parents will have to do all the letter writing.
Please do not complain over the phone about your treatmeant it will get you no where what so ever. All it does is give them warning so they have a defence ready. Do everything in writting and keep copies of everything.
 
eyeko the first thing you need to do is put your complaint in writing and also get your parents to complain too. plus if your waiting to hear from someone high up and they haven't called yet chase it up. pester them to show you mean business. i would go to the hospital and make an appointment to see someone from pals instead of calling them. also i would make sure they all knew i was going to take this to the gmc if it was not dealt with. if your not the only one who has had this kind of treatment by this consultant then pals and everyone else would be very interested in this.
 
Thanks Mike, for the excellent advice once again. You've all really really helped me in forming my plan of action lol. I think its really a serious situation that desperately needs dealing with properly, to get it really resolved. Thanks for all of your input. I'm gonna rally the parents together into one room, with one laptop and type up some letters. I'm thinking sending them to the hospital complaints people, and the MP? And also oining PALS to let me go down and have a meeting with them and if not take it to the gmc?Does that sound like a good plan? Sorry to be so needy but I just really really wanna do this right and my parents are also confused and upset by it all and wondering what to do for the best. Thanks so so much to all xx
 
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