• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

What could the NHS do to improve type 1 care ?

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. 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.
Click to expand...
That's exactly the issue. Those who participate on line are not average in terms of the population.
 
catapillar said:
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?
Click to expand...
Because to realistically begin to get a feel for someone elses life you need to be with them 24/7. So either the dsn moves in with the person with diabetes and follows them to work/care for their children or other dependants..or that person shadows the dsn through their clinics/admin/homelife etc
 
goalie said:
Because to realistically begin to get a feel for someone elses life you need to be with them 24/7. So either the dsn moves in with the person with diabetes and follows them to work/care for their children or other dependants..or that person shadows the dsn through their clinics/admin/homelife etc
Click to expand...

Hmm yes I see what you mean.

You know how they give teenage girls a robot baby that cries & they can burp, feed change etc to teach them that looking after babies is hard (& contraception is a good idea)? Wouldn't it be better to give the HCP a sort of diabetic tamagotchi to manage - because who is going to want a HCP following them round for a week? They could have something that basically showed a CGM line and they could tell it what they were doing, what they were eating, how they were feeling and then enter how much they were injecting & the CGM line could react accordingly (or in some completely unexpected manner, to make it a bit more realistic).
 
Juicyj said:
@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 :wacky:
Click to expand...

I think it costs more to prescribe teststrips every 2 weeks than it does to issue every month.........pharmacy charges, more admin costs etc. Without sufficient strips, using a pump and making sure the settings on it are correct, can only be done by checking bg,cgm or fgm, but MDI is also the same
 
noblehead said:
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,
Click to expand...
Before I got my Libre I was up to every week and a half at one point (200 strips). Many a time I put a prescription in only to be told I wasn't due any yet. Very much not funny if I was running low!
 
catapillar said:
Hmm yes I see what you mean.

You know how they give teenage girls a robot baby that cries & they can burp, feed change etc to teach them that looking after babies is hard (& contraception is a good idea)? Wouldn't it be better to give the HCP a sort of diabetic tamagotchi to manage - because who is going to want a HCP following them round for a week? They could have something that basically showed a CGM line and they could tell it what they were doing, what they were eating, how they were feeling and then enter how much they were injecting & the CGM line could react accordingly (or in some completely unexpected manner, to make it a bit more realistic).
Click to expand...
CGM might be giving them too much help (most diabetics don't get that) just have it throw numbers at them every few hours. Going up? Going down? You work it out! Now that would be a fantastic idea!
 
I would suggest we get to modify their car speedos so they can only check the speed 4-6 times a day. See how long they keep their licence!
 
I just wish that Type 1 diabetes care was taught to nursing staff in hospital wards. When they withheld my basal insulin because I had a hypo during the evening my blood sugar was in the 20s the next morning, the Diabetic Specialist managed to get me discharged on the basis that I needed to go home and get it sorted myself (6 days after open heart surgery). When seeing my Diabetic Consultant some weeks later and mentioning this to him, he remarked that he wasn't surprised! Not good enough,
 
Sorting out prescrptions would be good. I tend to need one fortnightly too as amounts of things don't match up. Initially given 100 test strips a month now on 150 after I had to tell receptionist about driving and excercise. But 200 lancets and 100 needles. Last time I was told off at the pharmacy because they read their records wrong a d accused me of ordering too much insulin, the previous script had actually been for test strips and lancets!
 
catapillar said:
Wouldn't it be better to give the HCP a sort of diabetic tamagotchi to manage - because who is going to want a HCP following them round for a week?
Click to expand...
Bingo. And that's what we're working on. And they absolutely do not get a CGM readout unless they pay for it, just like any other T1 in most circumstances. IP is developed and we're working on getting it coded up. That's all I can say for now.
 
tim2000s said:
Bingo. And that's what we're working on. And they absolutely do not get a CGM readout unless they pay for it, just like any other T1 in most circumstances. IP is developed and we're working on getting it coded up. That's all I can say for now.
Click to expand...

But will a CGM line support the numbers that they get when they test the diabetic tamagotchi? Because then, when they don't understand why the tamagotchi's hba1c is 75 when the average on the readings they took was 6.6, you could show them the CGM line & everything they missed without a CGM. Might make for an interesting discussion point with HCPs on funding CGM/FGM...
 
catapillar said:
But will a CGM line support the numbers that they get when they test the diabetic tamagotchi? Because then, when they don't understand why the tamagotchi's hba1c is 75 when the average on the readings they took was 6.6, you could show them the CGM line & everything they missed without a CGM. Might make for an interesting discussion point with HCPs on funding CGM/FGM...
Click to expand...
The whole point is to allow HCPs to understand what it feels like to be diagnosed with the tools available to the majority (also working on it for T2s, so it's not just a T1 project). It becomes very interesting very quickly.
 
Back
Top