Advice on how to deal with an abusive paediatric diabetic nurse

[beth888]

It was an extremely stressful day for me and my family yesterday regarding a really horrible abusive phone call from my Childs paediatric diabetic nurse which caused us all a lot of distress. She made threats that she would be dealing with our family the "HARD WAY" from now on and involving safeguarding all because I refused to allow her to continually be disrespectful towards me during her phone call and make false accusations about me. She then hung up the phone on me and proceeded to text messages to my phone totally twisting the truth of what had happened and making false accusations about me again. She is highly narcissistic, abusing her powers and seems hell bent on trying to use taking our child as punishment for not putting up with her abuse.

Surely this is misconduct on her part? and a formal complaint needs to be made but I don't know who to contact, who will listen to us over a nurses account. Do I need a family law solicitor? She is much too aggressive for us to deal with and this was not the first time she has been aggressive towards us, usually she is very passive agressive and I wonder if there is more to this such as disability discrimination perhaps over our social status and vulnerabilities as we seem to be constantly under the suspicion of medical negligence totally invalid??? as we have worked really hard with everything the diabetic team have told us to do.

It would be good to know what we do now as we can't go on dealing with this particular nurse after what happened yesterday. We at no point refused to work with the diabetic team or refused any treatments, we are administering treatments and have always worked with the diabetic team. We don't have any point of contact, I made several attempts to contact the dietitican who is usually friendly but she has not got back to us and I'm very distressed about what will happen to our family. thanks

 

[KennyA]

Hi, and welcome to the forums. I'm assuming you are in the UK and want to make an NHS complaint. You'll find useful information here:

How to complain to the NHS

Find out how to complain about the NHS, who to complain to, what to expect after you've made a complaint and what you can do if you're unhappy with the outcome.

www.nhs.uk

K

 

[JMK1954]

I assume this nurse is part of a hospital team. I suggest contacting the hospital PALs service. You should be able to find contact details for them on the hospital's website. Make some notes about exactly what was said while this is all still fresh in your mind. You can ask to have no further dealings with a particular member of staff. You can make a complaint about their behaviour through the PALS service
,

 

[Hopeful34]

Just to add to the post above, that I've founds PALS very helpful. I'd also check out on the hospital website who else is in the Endocrinology team, that you could ask to see going forward.

 

[Juicyj]

Wow, that sounds absolutely awful, I would start by writing down an account of the conversation and what took place so you have recorded as much information as possible, try to write the situation down as impartially as you can so from a practical point as someone listening to the conversation would of heard it, you can contact the hospital via phone to get their complaints procedure, which will help you steer this complaint to the correct person/dept.

As if your role as a carer and parent isn't hard enough, dealing with this is awful, I always expect compassion and care from nurses not negativity and criticism, this does no one any good.

 

[Resurgam]

I have several small recording devices, and I know how to change to speakerphone - I suggest that for any subsequent interactions you utilise something similar, and perhaps make permanent records of text messages.
Some people deserve to be called out about their behaviour.
If you are told that it is illegal to make recordings, just smile and claim that it was a recording being made in your own home when the phone rang and you were so shocked by what was said that you completely forgot about it until long afterwards.

 

[beth888]

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.

 

[Jaylee]

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.

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?

 

[beth888]

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.

 

[Jaylee]

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 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.

 

[beth888]

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.

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.

 

[Hopeful34]

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.

 

[beth888]

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.

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..

 

[Jaylee]

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.

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..

 

[Antje77]

when we refused the sensor because she still had to be finger pricked as well

Why 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.

 

[beth888]

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..

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.

 

[beth888]

Why 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.

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.

 

[Jaylee]

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.

No, as far as I know I’m the only T1 in the family.(Though my father did later develop T2.)
When I was diagnosed at the time, my mum was given this rather bleak outlook? (Regarding limbs, eyesight & longevity..)

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.

1. I can under stand the whole rigmarole & the noise of something planted on the arm could be distressing after the DKA experience.
Might need a different tactic other than an HCP fitting it to make it less distressing? HCPs can be a little “cold.”

2. Let the kid play. Carry on as normal. Most sensor wearers do with ours. I front a rock band. Quite often get another wearer come up to me at the end of the night for a chat. (BG levels at gigs.)

3. Yep, it’s always prudent to check any errant numbers with a fingerprick. Also, sensors take longer to recover from lows than I feel or even what the meter says. So it’s always better to log “the meter says this.” Or nursey will say “oh, you were low for a long time here.”

4. As far as I know it’s Teflon of some sort? (Someone correct me if I’m wrong.) it interprets BG, by sitting in the interstitial fluid layer.
Occasionally there can be a little blood on inserting. But nothing major.

5. It transmits via Bluetooth. What are your concerns about the “signal transmission?”

Sounds like your nurse hasn’t explained the tech fully, to me…?

It happens. I have a colleague with a newly DXd 3 year old. He’s caught twix his partner & a confusing nurse regarding a Dexcom sensor.. The thing was low (3.4?) for 12 hours. (I saw the graph..) The sensor had been fitted incorrectly by the nurse.
They were fingerpicking. The nurse was telling them not to..?

Upset all round & the kids levels were pretty high..

 

[Juicyj]

Yes the sensors are teflon, they are no bother at all once a few hours has passed you don't know they are there. No issue with WIFI, it's a bluetooth signal so again no issue there.

100,000's possibly 1,000,000's of us wear them, we can't live a normal life without them, they take the fuss and bother out of constant finger pricks and they give you a moving picture of blood glucose levels rather than a snapshot which is vital when making decisions like, can I eat that, am I ok to go and run 10 miles etc etc

You can wear some cool and funky patches on your sensors so it makes it more fun to wear, but the tech is incredible and gives you as a parent reassurance that you can see what's going on without doing a finger prick test, the Dexcom G6 shares information with parents/carers too so when they are at school you can see what their levels are doing, I would never go back to finger pricks, they gave me sore fingers and tied me down when I was on the go, I only do a finger prick now to calibrate the sensor or to check a high/low reading and that's probably about twice a month now.

Speak to us as we live with it, any help support you need we are all here to help, but if we can make life for you as a parent easier with our experiences then I hope that helps.