Hi, Father of now 2 type 1 children.

[FatherofT1]

Hi everyone.
I'm afraid I'm here as I am at a loss as to what to do. I have two children a daughter who is 23 and diagnosied wth T1 when she was 12 (in Australia at the time but that's a whole other story...) and a son who has only just been diagnosed at 20. My son seems to be coping ok as he was mature when diagnosed. My daughter has lived with it for over half her life including those difficult teenage years. However she managed the condition (even though she has a serious needle phobia) and has volonteered for various trials for pumps and closed loop systems (no needles you see). The good news that she has two beautiful children a daughter of 3 and a son of 1. Why am I at a loss? Her first pregnancy went well dispite doom laden health care professionals. Unfortunately during the pregnancy with her son she lost her ability to sense her lows and was unable to bring her levels up to anywhere approaching normal leading to her staying in hospital (in the maternaty unit) for a couple of months before the birth. During this time they were still unable to stablise her levels and eventually accused her of self inducing the lows through over dosing herself with insulin. This dispite her being on a canualr / sliding scale and having no access to her own insulin (which was pump delivered and therfore recorded) these acusations have now led social services to remove her children from her and are intending to put a permanent order in this week for their removal from her. This has ben going on since her son was born over a year ago, dragged out by "professionals" who seem to have very little understanding of diabetes or my daughters case.
I'm sorry this is a very long and sad introduction but I would welcome any help or advice from anyone who may be able to help or has experience of this kind of thing.

 

[grovesy]

I doubt whether anyone here could give you any advice but your best bet would be ring the helpline the number is at the top of the page.
I am presuming you are in the UK.

 

[LucyDUK]

Hi @FatherofT1

Sorry to read of the problems your daughter is facing.

As I expect you probably know, this is a really unusual situation so unlikely you will find anyone here who has faced a similar experience. There is lots of knowledge about diabetes here, experience during pregnancy and loss of hypo awareness as well as methods to improve hypo symptoms or deal with them if usual approaches don’t solve the problem - such as pumps and CGM but again it seems this has been something your daughter has tried. Unfortunately there is unlikely to be so much experience around the specific issues your daughter is facing with social services.

As mentioned you can call the Diabetes UK Helpline to talk this through and the number can be found at the top of the page.

You may also find the Family Rights Group helpful: https://www.frg.org.uk/

 

[everydayupsanddowns]

Welcome to the forum @FatherofT1

I am so sorry to hear about the situation your daughter finds herself in.

In patient care for people with diabetes in hospital seems fraught with risk and the possibilities of errors. Particularly where T1 has suddenly ‘changed the rules’ and is behaving very differently to normal.

It must be devastating to face the loss of children because of diabetes management, particularly in the circumstances you describe - I can barely imagine it.

Do you know where the pressure about the children is coming from? Are her diabetes team supportive?

I would second @LucyDUK ‘s suggestion of contacting the helpline during weekday office hours on 03451232399 to see of there is any extra support, advocacy or help that Diabetes UK can offer.

 

[Inka]

During this time they were still unable to stablise her levels and eventually accused her of self inducing the lows through over dosing herself with insulin. This dispite her being on a canualr / sliding scale and having no access to her own insulin (which was pump delivered and therfore recorded)

This sounds awful - beyond words. All I can think of is a) get input from her team if they’re supportive or try to get an expert diabetes witness who can vouch that such lows aren’t necessarily due to overdosing. B) Would she be willing to be monitored (ie visually) for 24 hours or whatever to demonstrate the lows happen of their own accord not because of something she’s doing?

Could she not have a CGM that used tech to make her results available to her team and to relatives - so for safety but also so her team could see what was happening and how she was managing it. If she showed she was completely willing to work with everyone for her children’s benefits, perhaps they’d allow her a period to prove she was ok.

I hope she gets the advice and representation she needs.