Hello, I'm new here! My 5 year old was diagnosed Type 1 four months ago. Experience in hospital awful and after care not so great. My son is coping ok with it all, still in honeymoon period apparently! Finding the world of diabetes a minefield atm!!😱
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Hello!
- Thread starter kelly1234
- Start date
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Pumper_Sue
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi Kelly,
welcome to the forum, so sorry you have had such bad care regarding your son's diagnoses and after care.
My attitude is complain and keep complaining until things improve.
Also learn as much as you can your self so you can help your son.
welcome to the forum, so sorry you have had such bad care regarding your son's diagnoses and after care.
My attitude is complain and keep complaining until things improve.
Also learn as much as you can your self so you can help your son.
fencesitter
Well-Known Member
- Relationship to Diabetes
- Parent
Hello and a warm welcome 🙂 Sorry about the care in hospital, and the aftercare, the last thing you need. But this is a great place to come for advice, and soon you'll be an expert so don't despair. There's a brilliant book called Type 1 diabetes in children, young people and adolescents by Ragnar Hanas which is clearly written and very comprehensive, can't recommend it highly enough. Do fire away with your questions and someone on here will be able to help I'm sure.
Catherine (mum to William, aged 15, T1 for two years now)
Catherine (mum to William, aged 15, T1 for two years now)
Hello again, thank you for the welcome! brilliant that such a forum exists.🙂
delb t, in terms of the aftercare its just not being given enough information really on the basics - what to expect from diabetes, possible behaviours (we've experienced really agressive behaviour since diagnosis - checked bm and hes been low/high), just a little bit of pre-emptive info. Also the diabetic team work office hours - told to call childrens ward if problem - but.....the nurses/drs dont have that much knowledge tbh!! My saviour in all of this has been a fantastic friend who is a nurse and did her degree in diabetes - she has been fab at guiding through the most basic things!
When we went into hospital it was Friday 5pm - the diabetic team had all gone home - did not see anyone with actual knowledge til monday late afternoon - that was once i had kicked up merry hell about wanting to see someone. He had been started on insulin but the nurses did not have the knowledge. He was held down each time to have his jab by several nurses which scared the life out of him (and me!) and has left a lasting impression.
As a family it has had a huge life changing impact - i have 3 older kids all with additional needs (sensory/austism) who didnt understand what was going on and i had to ask the team DN on several occasions for her to explain in simple terms about Type 1 before she would. I know theyre all busy but little things make a difference! We were sent home on Tues afternoon, was shown just before how to do an injection...once on a teddy and then on son.
Having jumped up and down a considerable amount, got in touch with balance buddies, got in touch with Clin Psych (diabetic team) i have now been given a lot more info - the clin psych sent me the Type 1 Diabetes book that was referred to (by willsmum) - received yesterday - its fantastic!! perfect for dipping in and out of!
4 months on my lil boy is coping and so are we all, he has done his own jab 4 times now (i help put needle in) which he is very proud of - gets a team point at school for doing it!!
pumper sue - yep defo complaining!! have had long discussion with clin psych, she took case to team and does actually seem to be wanting to get things sorted, will also goto PALS - really dont want others experiencing what we did whilst/after hospital.
delb t, in terms of the aftercare its just not being given enough information really on the basics - what to expect from diabetes, possible behaviours (we've experienced really agressive behaviour since diagnosis - checked bm and hes been low/high), just a little bit of pre-emptive info. Also the diabetic team work office hours - told to call childrens ward if problem - but.....the nurses/drs dont have that much knowledge tbh!! My saviour in all of this has been a fantastic friend who is a nurse and did her degree in diabetes - she has been fab at guiding through the most basic things!
When we went into hospital it was Friday 5pm - the diabetic team had all gone home - did not see anyone with actual knowledge til monday late afternoon - that was once i had kicked up merry hell about wanting to see someone. He had been started on insulin but the nurses did not have the knowledge. He was held down each time to have his jab by several nurses which scared the life out of him (and me!) and has left a lasting impression.
As a family it has had a huge life changing impact - i have 3 older kids all with additional needs (sensory/austism) who didnt understand what was going on and i had to ask the team DN on several occasions for her to explain in simple terms about Type 1 before she would. I know theyre all busy but little things make a difference! We were sent home on Tues afternoon, was shown just before how to do an injection...once on a teddy and then on son.
Having jumped up and down a considerable amount, got in touch with balance buddies, got in touch with Clin Psych (diabetic team) i have now been given a lot more info - the clin psych sent me the Type 1 Diabetes book that was referred to (by willsmum) - received yesterday - its fantastic!! perfect for dipping in and out of!
4 months on my lil boy is coping and so are we all, he has done his own jab 4 times now (i help put needle in) which he is very proud of - gets a team point at school for doing it!!
pumper sue - yep defo complaining!! have had long discussion with clin psych, she took case to team and does actually seem to be wanting to get things sorted, will also goto PALS - really dont want others experiencing what we did whilst/after hospital.
delb t
Well-Known Member
- Relationship to Diabetes
- Parent
well done you for fighting your corner for you and your son - at the beginning I was so shellshocked I would take what was said and have a meltdown later - not now Im more confident and will say it straight if I dont agree.Plus I think this forum has helped too.your son has done so well in a matter of months what a superstar !!
Vix
Well-Known Member
- Relationship to Diabetes
- Type 1
Welcome Kelly 🙂
That sounds like a terrible experience, I was very lucky that when my brother and I were diagnosed when we were little that we had a very good team around us, and for my parents. But, we also felt that there was a level of support missing and my mum and I set up a charity at our local hospital for parents and children with diabetes so the children could meet up and forget for a short time that they were 'different' (that is not the right word but I can't think of another) and the parents could share their anxieties without trying to keep their fears from their children. I sometimes think it was harder for my parents than it was for me as they were helpless.
There is no excuse for inadequate care, and I had a very bad experience when I had my bloods taken (no idea to this day what she did so wrong but my arm was battered and bruised and so swollen that I couldn't bend it) that has scarred me even now and I have major panic attacks at the thought of blood tests (not good for anyone, but definitely not a diabetic) and I wish my parents had made a complaint at the time so well done for standing up for what you believe is right.
It sounds like your son is doing brilliantly, I remember the leap from injecting an orange to injecting myself and it's daunting for any child so he's doing really well!
xx
That sounds like a terrible experience, I was very lucky that when my brother and I were diagnosed when we were little that we had a very good team around us, and for my parents. But, we also felt that there was a level of support missing and my mum and I set up a charity at our local hospital for parents and children with diabetes so the children could meet up and forget for a short time that they were 'different' (that is not the right word but I can't think of another) and the parents could share their anxieties without trying to keep their fears from their children. I sometimes think it was harder for my parents than it was for me as they were helpless.
There is no excuse for inadequate care, and I had a very bad experience when I had my bloods taken (no idea to this day what she did so wrong but my arm was battered and bruised and so swollen that I couldn't bend it) that has scarred me even now and I have major panic attacks at the thought of blood tests (not good for anyone, but definitely not a diabetic) and I wish my parents had made a complaint at the time so well done for standing up for what you believe is right.
It sounds like your son is doing brilliantly, I remember the leap from injecting an orange to injecting myself and it's daunting for any child so he's doing really well!
xx
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