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What could the NHS do to improve type 1 care ?

Couldn't agree more....the nurse who took my bloods last time commented that I "must have had too much sugar when I was little" to have got T1 diagnosed at my age.
 
Going to steal an idea off @slip and his thread.

I've always thought it would be useful to be able to "give" your diabetes temporarily to someone so they could see what it was like. The next best thing would be to get the DSNs to manage a volunteers diabetes for a period of time (a week?) Just so they grasp the differences between theory and practise.

It would be extra useful if they did a few different people so they also saw how different everyone is!

Probably the main problem would probably be finding diabetics that would be willing to have their DSNs follow them around for a week!
 
Already been thinking about this one. Working on something that will give Diabetes care staff the ability to get this experience.
 
tim2000s said:
Already been thinking about this one. Working on something that will give Diabetes care staff the ability to get this experience.
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You can't just remove people's pancreases you know, it's considered rude....
 
tim2000s said:
Already been thinking about this one. Working on something that will give Diabetes care staff the ability to get this experience.
Click to expand...

I once gave my GP an insulin pen with no cartridge in it and some 5mm disposable needles and a bg meter with a tub of the prescribed teststrips and said - you have a go at injecting 5-6 times a day in your tummy, arm or backside and at the same time, get out the bg meter and do a bg test to see what your bg levels are and if that's not enough, try to calculate the carb content of the food you want to eat so that you can work out how much insulin you need to inject so that the lovely food you are going to eat, can be digested safely AND also deal with the hypo low bg feeling as well. GP sat silent and shut up and said, you do a really good job of looking after yourself dont you and I just said - thanks I do.
 
@iHs I don't know whether to laugh or cry!

Huge respect to you for getting the point across to your GP in such an imaginative way! Brilliant stuff.

 
Snapsy said:
@iHs I don't know whether to laugh or cry!

Huge respect to you for getting the point across to your GP in such an imaginative way! Brilliant stuff.

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At the time, I was fuming over the fact that my GP thanks to PCT guidance, was trying to restrict the amount of bg teststrips that I was allowed to have per month and thought that insulin worked just like a tablet??????????????????????????????????????????????? WAS I ANGRY
 


Nice try @iHs

But with a fully working pancreas the Dr would never appreciate how difficult it is to juggle insulin, food , exercise, work and trying to live a normal life.
 
noblehead said:
Nice try @iHs

But with a fully working pancreas the Dr would never appreciate how difficult it is to juggle insulin, food , exercise, work and trying to live a normal life.
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My GP did in the end, buy a book all about carbohydrate and insulin and also went on some courses to understand diabetes much better. Thankfully now, I have a pump and rarely see my GP anymore but had a nice friendly long chat with a diabetes nurse at my surgery who understood insulin dependance fairly well.
 
@Diabell I've known of a buddy service being available, though not in my area of Lincolnshire. So I've not joined this forum to gain information & help with issues, not having support or convenient appointments with my DN or specialist. As i've had troubles with my control of BGs since day 1 of diagnosis. I've adjusted my treatment & dosages accordingly without consultation & stillhere living, fighting fit too!!
 
I reckon they should prescribe Think Like A Pancreas to every T1, it would save them a fortune. Since being discharged from hospital with set amounts of insulin to be taken, I've had no input whatsoever from the NHS and been offered no courses. I learnt everything from that book. On my check ups I'm told 'no problems, see you in 6 months time' and haven't seen my GP in the last 3 years.
 
The NHS should make the freestyle libre free to all type one diabetics. Reports have shown that control is greatly improved using the device and more people would use it including myself.
 
Invest an extra £40 a month so I can try a basal that actually lasts more than 8 hours! Never never mind the fact I've already saved them more than that on reduced levemir and BG test strips since I started self funding a libre.
 
@iHs got a similar problem with my surgery, changed meters and they now only give me 100 test strips which last 2 weeks so every fortnight I have to reorder, last prescription was rejected so spoke to the woman who rejected it and said rather loudly and within earshot of her colleagues 'I am insulin dependent and on a pump I have to test 7 to 10 times a day as I drive also' she quickly said she would look into it and fortunately I got more strips, wasn't very happy though as they hadn't checked that I was insulin dependent, so this month I've written it again in the notes, still ordering every 2 weeks though
 
pinewood said:
Couldn't agree more....the nurse who took my bloods last time commented that I "must have had too much sugar when I was little" to have got T1 diagnosed at my age. [/QUOTE

Arrggghhhhhhhh
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That really annoys me. I've had problems with my test strips too. It's frustrating and upsetting. Some doctors/nurses have no idea what Type 1 is like. I often dream of giving Type 1 to them for a month and then playing the part of a patronising doctor/nurse/receptionist and saying "Sorry - you've already had 50 strips this month",

So another thing I'd do is make it so we didn't have to faff about getting prescriptions so often (maybe every 3 months or so) and could have as many strips as we actually need. That would reduce a lot of stress, for a start.
 
Juicyj said:
still ordering every 2 weeks though
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That is ridiculous and unacceptable, strangely enough when I changed over to a pump they upped my test strips from 200 to 300 per repeat, it's much better as before I was having to order them every 4 weeks,
 
Would be even harder to find a DSN who is able to take a week out from their other clinical committments to do what would be a really useful exercise. I know someone who is a dsn. Those of you that use this forum are the exception imho. Lots of people find it hard to accept their diagnosis let alone commit to the work required to manage it safely. Some people cancel appointments at the last minute or just dont turn up.
 
goalie said:
Would be even harder to find a DSN who is able to take a week out from their other clinical committments to do what would be a really useful exercise.
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Why would they get time off from their other clinical commitments in order to manage someone's diabetes? I don't imagine any of us get time off in order to do the day to day diabetes management stuff. So if the purpose of the exercise is to show a DSN what managing diabetes is like in real life, why not carry on with the rest of the job as normal?
 
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