Thanks all for your responses. I could only email pals which I did. Hopefully they will get back. I'm still worried we won't be taken seriously or officials will believe the nurse is justified. I had no other point of contact to complain to, couldn't reach the diabetic team on any number, dietician who is usually very friendly and picks straight up has blanked me. I was thinking about trying to get a solicitor? and yes recording sounds like a good idea but I'm useless at tech. I'm just shocked that we have no say in our Childs care, everytime we mention the ratios, blood tests, sensors, side effects we get threatened with safeguarding, just shut down, ignored, or accused. This has been a total nightmare the whole way through for our whole family.
Thanks Jaylee. My child is ten in a few weeks, was diagnosed type 1 in April last year so almost a year now. Worst year of all our lives, been many tears but can honestly say the worst issue has been the way the diabetic team have treated me. The level of disrespect is shocking, I'm not allowed any input any say into the care without being shut down in a passive aggressive manner and threatened with hospital and or safeguarding which I feel is mis conduct and an abuse of power. I became distressed yesterday and raised my voice for the first time now I'm being accused of being aggressive. I've so had enough, I really don't know how I'm coping right now.Hi,
Welcome to the forum. Your experience sounds horrific in addition to the routine looking after your child.
How old is your child? & how long diagnosed?
Thanks Jaylee. My child is ten in a few weeks, was diagnosed type 1 in April last year so almost a year now. Worst year of all our lives, been many tears but can honestly say the worst issue has been the way the diabetic team have treated me. The level of disrespect is shocking, I'm not allowed any input any say into the care without being shut down in a passive aggressive manner and threatened with hospital and or safeguarding which I feel is mis conduct and an abuse of power. I became distressed yesterday and raised my voice for the first time now I'm being accused of being aggressive. I've so had enough, I really don't know how I'm coping right now.
haha! "as much clout as a pillow fight" I hope so... although they all seem to think they are superior... I prefer narcissistic than superior.... yep I really took the bait the other day when I was being shut down and lied about... just couldn't keep my mouth shut... So I've now got to sit here wondering what's next... worried for my girly... yes like yourself my child had only just turned 9 when she went into keto around her birthday ... she has coped better than me...Hi again,
OK, your kid is ten. At that age articulate enough.. I was 8 (well on a birthday.) when diagnosed in 1976.I remember my mum upset when we came away from appointments at “something” a nurse said..? On one occasion, they asked me what I liked to eat. I loved salads.. Still do. (Today, I can only assume. They thought it a “hippy diet?” I love meat also.)
Family dynamics change for a child with this condition. You got no idea how my sisters woke my dad whilst I was out all night with a girl & didn’t come home. Till the early hours. (Later than the time I normally do…) they thought me upside down in a ditch. (My dad was cool.)
It is easier said than done when someone else is giving advice. (& it probably ain’t working?) when your child is a little older, we are all individual.. they may be dealing with diabetes in their own world… I was told by a DSN recently my BGs behave when I’m out gigging. Living the “rock & roll” lifestyle as a band member. (Not in a “hedonistic way” I’m mindful of my diabetes.) Now she is a lovely woman. But “give up the day job?” I got as much chance of becoming a premier league footballer.. (frowned apon back in the 1980s.
Times have changed a little, but not much. There still seems to be the odd DSN “dragon.”
But that’s not to say they are all bad.. They Just don’t walk “the mile” in our shoes…
Keep talking to us, but I’ll stick my neck out & suggest your DSN has about as as much clout as a “pillow fight.”
Keep talking to us.
1966 wow wow another trooper, you've done so well, god bless. Appreciate you stopping by this thread to share you story thank you. We're not even a whole year in just yet and I feel broken already, a nervous wreck. We're living in fear of being accused of not managing the diabetes well enough and having our child taken. We've had two DSN's be very rude and threatening so far, once when we refused the sensor because she still had to be finger pricked as well and they threatened to put her back in hospital until the Hbac1 lowered more than it had, which I thought was mis conduct but said nothing... now we have been threatened again by another DSN with safeguarding because I wouldn't allow her to disrespect me and falsely accuse me of not listening when she was shutting me down over insulin concerns... We don't have say in any of our Childs treatment we just get threatened..I was diagnosed in 1966, and whilst in my first year at secondary school had a diabetes nurse who told her daughter (in the same school as me), confidential information regarding my diabetes, which her daughter spread round our year group. My dad complained to the hospital, and it never happened again (at least not to my knowledge).
The nurses I've had since then have been fantastic, and I really hope and pray that you get a new nurse that helps you and your daughter, and listens to you. It's hard enough dealing with a diagnosis of diabetes, without having the sort of treatment you've had. Take care and I hope PALS gets back to you quickly.
If it’s any consolation to you. (My mum must have gone through judgmental hell.)haha! "as much clout as a pillow fight" I hope so... although they all seem to think they are superior... I prefer narcissistic than superior.... yep I really took the bait the other day when I was being shut down and lied about... just couldn't keep my mouth shut... So I've now got to sit here wondering what's next... worried for my girly... yes like yourself my child had only just turned 9 when she went into keto around her birthday ... she has coped better than me...
Thankful for your message on here tonight really. So you've been on this road since 1976 well can I just say well done you've done fantastic, god bless you.
Why would you refuse the sensor?when we refused the sensor because she still had to be finger pricked as well
Yes I wish I could've recorded the other day. So much abuse happening with vulnerability, really is.. So your mother is type 1 too, we had no type 1 on either side of our families so this was a shock really was. Would never in a million years have ever seen this coming. You have such a great attitude and such a positvity I needed right now. Thank you very much for stopping by my post. And yes DSN's come and go the sooner this one goes the better, I've been sat here thinking maybe I could change hospital or move to avoid having to deal with them but they will be at the next place so there's no running away from this... got to face the music I guess.If it’s any consolation to you. (My mum must have gone through judgmental hell.)
When I was in my teens. My mum confided in me regarding passing on (genetically I suppose.) this condition.
My response was “sheds happen.” (You can guess I didn’t mention sheds..) Sheds do seem to happen. I’ve never seen anyone build one. (Apart from myself..)
From my experience, DSNs are on a revolving door.. They come & go. The next “one” could be a saint by contrast. Then the following replacement may well be as random as a “box of frogs..” But you & more essentially, your child will be wiser.
Maybe the next phone call with your child’s DSN. Mention, “your call is recorded for training purposes.” It may help the HCP to reign in the fire breathing..?
If she asks “why?” It helps you take note of then”advice.”
Best wishes to you & your kid. A few feathers floating in the pillow fight. But nothing more than that..
There was a number of reasonsWhy would you refuse the sensor?
It gives so much insight on where to adjust things, makes my life a lot easier, and it adds a layer of safety with the alarms..
And yes, I fingerprick as well, but that doesn't diminish the improvement a sensor has given me, both in diabetes stability and in quality of life.
No, as far as I know I’m the only T1 in the family.(Though my father did later develop T2.)Yes I wish I could've recorded the other day. So much abuse happening with vulnerability, really is.. So your mother is type 1 too, we had no type 1 on either side of our families so this was a shock really was. Would never in a million years have ever seen this coming. You have such a great attitude and such a positvity I needed right now. Thank you very much for stopping by my post. And yes DSN's come and go the sooner this one goes the better, I've been sat here thinking maybe I could change hospital or move to avoid having to deal with them but they will be at the next place so there's no running away from this... got to face the music I guess.
There was a number of reasons
1. my child refused it due to having PTSD from the cannula insertion during DKA emergency admission and was terrified of having it fitted
2. my child is still at an age where they play so didn't want to keep knocking it
3. my child would still need the finger pricks anyway
4. we were all concerned about the fact a piece of metal stays continually in the blood flow
5 we were all concerned about the wifi
anyway we were threatened so we agreed, I have a photo of my Childs distress during having it fitted. It was constantly falling off during the summer when my child was sweating playing and knocking it. My child had constant worries over knocking it which was causing movement restriction also. It's not for everyone and I'm sure when older and my Childs own decision things may be different.
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