Social Services involvement

[Pumper_Sue]

@Amigo I'm not sure but think Stella is having problems with the hospital team not the GP.
@stella have you considered taking a tape recorder/Dictaphone into the meeting with you?

 

[Lilian]

Brittle diabetes mellitus (or labile diabetes) is a term used to describe particularly hard to control type 1 diabetes. Those people who have brittle diabetes will experience frequent, extreme swings in blood glucose levels, causing hyperglycemia or hypoglycemia.

 

[Tina63]

I take it your daughter is on Novorapid with food and carb counting for flexible intake - as opposed to fixed doses of insulin?

It all sounds horribly shocking.

 

[Kiera Tuck]

This might seem like a silly answer but did you check the expiry date of the insulin?
My son was diagnosed with type one diabetes on 1St August 2016. My first delivery of a box of 5 novorapid refills went straight into the fridge. I decided to write a list of all the medication and equipment that's needed to be ordered and I noticed the expiry date was 02/16 yes February this year.... This could of killed my two yr old as the insulin wouldn't of worked. I was fuming, the paediatrician and diabetic team were fuming. The chemist just shrugged it off, said don't know who gave you that and gave me a new in date box!!
that It might be worth double checking just incase. X
I really feel for you hun. X

 

[Copepod]

You're right that it's important to check expiry date of insulin. Preferably BEFORE you leave chemist, so that, if it's in date, but not long to expiry, it can be reissued to someone else. If you take it out the door, then return, it will be wasted. I've left short dated boxes in chemist, as I get 4 boxes at a time, to last me nearly a year.
However, while it's not advisable to use out of date insulin, it won't kill you. It might be less effective.

 

[Cate]

I hope things have settled down a bit with the SW side by now?

I was a terrible T1 teenager. I abused insulin as a means of controlling my weight - missing out pen injections at school completely, and eating stuff I shouldn't have, both at school and at home. It's taken me years to get over it, I never told *anyone* about it until recently (some 25 years later!). It's beginning to be a recognised eating disorder - I saw a counsellor at my hospital clinic every month for a year and I talked to her about it as part of that process.

I hope that's not what your daughter is doing, but it could be - I was great at saying all the right things, and making my parents believe I was doing them, too.

 

[stella]

Hi. .I'm glad your getting over it now. .it did cross my mind and maybe she was but she's always been so slim and athletic. .and tbh probably not that bright that she'd even think of that !! Social service have put her on a child in need plan. .which basically outlines what we as parents and the school should be doing to support her. .although we have al ways Done what they set out ! The dr's have been really bad..adamant we were wilfully neglecting her but the rest of the panel decided it was not the case. .Could've been worse I suppose. .I'm still going to make a complaint about the hospital because as "professionals " they didn't do enough to investigate or try new things. . Neglect on their part I think !! Thanks for your comment. .I hope your doing well xx

 

[Amigo]

Hi. .I'm glad your getting over it now. .it did cross my mind and maybe she was but she's always been so slim and athletic. .and tbh probably not that bright that she'd even think of that !! Social service have put her on a child in need plan. .which basically outlines what we as parents and the school should be doing to support her. .although we have al ways Done what they set out ! The dr's have been really bad..adamant we were wilfully neglecting her but the rest of the panel decided it was not the case. .Could've been worse I suppose. .I'm still going to make a complaint about the hospital because as "professionals " they didn't do enough to investigate or try new things. . Neglect on their part I think !! Thanks for your comment. .I hope your doing well xx

Glad things have resolved in your favour to some extent Stella. Your case stirred up anger in me and I really think you should make an official complain about the actions of the hospital doctors. Sending best wishes, Amigo

 

[Copepod]

Glad to hear you've got some answers / plans for future. You may want to complain about your diabetes team, but unless there's an alternative hospital nearby to which you can transfer, you may have to maintain your relationship. Have you investigated transferring your daughter's care to another hospital?

 

[SB2015]

Only just read this thread. I am glad I am not having my BP checked today!! What an awful situation to be out in. I am glad that things are resolved now but definitely think a complaint needs to be made.

I have had the term Brittle Diabetes used to describe my condition but only by doctors/consultants/ ... Who have absolutely no knowledge of diabetes apart from what they did in training many years ago. Over friend thought I must be 'brittle' as I have had a hypo!!!! Is there a T1 who hasn't and doesn't? I get the impression that it was a term used when there were not the variety of treatments available.

 

[stella]

Glad things have resolved in your favour to some extent Stella. Your case stirred up anger in me and I really think you should make an official complain about the actions of the hospital doctors. Sending best wishes, Amigo

Glad things have resolved in your favour to some extent Stella. Your case stirred up anger in me and I really think you should make an official complain about the actions of the hospital doctors. Sending best wishes, Amigo

Thanks again Amigo. .I fully intend to !!

 

[stella]

Glad to hear you've got some answers / plans for future. You may want to complain about your diabetes team, but unless there's an alternative hospital nearby to which you can transfer, you may have to maintain your relationship. Have you investigated transferring your daughter's care to another hospital?

Yes I have enquired about a transfer. . I've made it quite clear I'm not comfortable being in the same room with them after their accusations but I think for the duration of the plan I have to bite my tongue! !