• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

bit annoyed

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

bev

Well-Known Member
Relationship to Diabetes
Parent of person with diabetes
Hi all,

I am feeling a bit upset after speaking with Alex's DSN.
His appointment had been moved so we arent seeing them for 4 months from the last appointment - so i asked for one for before he goes to the DUK week in august.
Then i mentioned that his levels have been high through the night and i wanted to know whether to increase his levemir - so she said ok if you want etc..
I then asked what news there was on the cgm machine - they have been 'finding' out for about 3 months now! She said they have found the machine but have to apply for funding for the infusion sets and sensors - to which i replied that if she found out the cost then we will pay for it ourselves as we arent prepared to wait forever.

I said i am worried about his hba1c because his levels have been all over the place - then she told me i was a PERFECTIONIST and that i shouldnt worry so much!

I feel that using this word she is trying to say that i am 'fussing too much' - but i honestly dont think i am. I am worried that these high numbers are doing him some damage and i want to get it right - but does that make me a perfectionist? :confused:Bev
 
bev said:
Hi all,

I am feeling a bit upset after speaking with Alex's DSN.
His appointment had been moved so we arent seeing them for 4 months from the last appointment - so i asked for one for before he goes to the DUK week in august.
Then i mentioned that his levels have been high through the night and i wanted to know whether to increase his levemir - so she said ok if you want etc..
I then asked what news there was on the cgm machine - they have been 'finding' out for about 3 months now! She said they have found the machine but have to apply for funding for the infusion sets and sensors - to which i replied that if she found out the cost then we will pay for it ourselves as we arent prepared to wait forever.

I said i am worried about his hba1c because his levels have been all over the place - then she told me i was a PERFECTIONIST and that i shouldnt worry so much!

I feel that using this word she is trying to say that i am 'fussing too much' - but i honestly dont think i am. I am worried that these high numbers are doing him some damage and i want to get it right - but does that make me a perfectionist? :confused:Bev
Click to expand...

wow how could alexs dsn accuse you of being a perfectionist??? all you are trying to do is look after your son and make sure he is good health which in turn will save the nhs a lot of money and bed space in the future!!!!!
 
Hi Bev,

That DSN wants to sort her attitude out for a start...sorry...but some of these people have'nt the slightest clue what living with diabetes is like...they only look at the condition and how it should be treat out of a book.

You bev, are doing all you can for alex etc, and to secure his future health etc... You want the best for him at any cost...that does'nt make you a perfectionist...just a top loving mum.

If you want a chat.. get in touch through pm

Heidi
🙂
 
Well if he was my son I'd be exactly the same , surely it is more responsible of you as a parent to keep a close watch on his levels and act accordingly ? I'm certain if Alex was her son she would be the same . Stupid woman!! You do what you think is right Bev and I think Alex is lucky to have a mother who will fight for him ... keep up the good work and dont take no for an answer ... ever where Alex's health is concearned .
 
No you aren't!

No you aren't being a blooming perfectionist!! You know what levels are acceptable and are not - and know that going either side occassionally will do know harm - but you also know long sustained periods of high sugars can cause long term complications. What an annoying, annoying stupid comment.

Ooooh! Blood boiling!
 
OMG! What a stupid, annoying and completely insensitive comment to make. You are absolutely not being too fussy. You're doing your absolute best to care for your son and make sure he doesn't suffer any long term problems. People like this make me very very cross, they don't understand what effect one silly comment can have. My GP recently told me that I shouldn't try for another baby as 'having a baby when you've got diabetes isn't a good idea as it's really hard work and can result in all sorts of problems'.

I'm very lucky. My DSN is fab and also has type 1 so completely understands where I'm coming from.

Umph! Very cross!
 
when i come face to face with someone who gives me advice like that i tend to try and ask them if they have diabetes. if they say no then i ask them if they would like to spend a day as a diabetic and see what its like to worry about bg levels constantly and for them to spend a day in our shoes. tends to have the right effect on them.
 
That nurse should meet me, then she'd know what a REAL perfectionist is like - I get upset at a 7.2! Maybe in her scheme of things Alex's problems aren't on the scale of some of the patients she has to deal with, but it's a very inappropriate thing to say to a concerned mum who is just trying to get the best she can for her son - and doing an absolutely terrific job too!

You just keep doing what you're doing Bev, and try to think of the good care and advice you've received - like from the nice consultant. Is there any way you could get in touch with him to speed things along with the CGMS?
 
Hi Bev,

I don't think you're in the wrong, my DSNs are battle axes (ooops hope they don't snoop on here!) but they know their stuff, they see it day in, day out and are as close as anyone in the medical profession gets to living with the condition (diabetic nurses at GPs in my experience are a different matter- as Heidi says, working from the text book) and take no prisoners with excuses. That said, I think they'd love you.

You are within your rights to ask for a second opinion e.g. see another DSN either at the same hospital or travel elsewhere - a discussion to have with your GP.

As for patients part paying for infusion sets etc, be careful they are not cheap, and PCTs I understand get funny about sharing the funding for treatment and equipment with patients. It seems to be either all or nothing, no half-way houses.
 
Hi bev, it is normal to worry about our childrenand we want the best. As mums we know when our children are realy sick and when they are just swinging the lead.

My friend at work has a teenage son who has cystic fibrosis, she was backwards and forwards to her then GP because the lad had a realy bad cough. She is always good about making sure he has the physiotherapy that will clear his chest. The GP told her she was fussing too much. She then took the boy to see the specialist at Great Ormond Street, who was much more sympathetic, said the boy had a chest infection, gave them strong antibiotics and kept the lad in for a couple of days. He got better, but only because of mums sheer determination to get the right treatment.

I think you need to be persistent and if possible ask to see or speak to someone else. It is difficult, but for Alexs health and your peace of mind it is worth it.
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top