Day one of the ASPIRE course

[redrevis]

Hi guys and gals,

Just got back from my first day on the ASPIRE course, which is a local version of the DAFNE course.

Have to say I found it quite interesting. A lot of the information I already knew (which was to be expected), but I still learnt a few things which is great.

What was most interesting was hearing the views and attitudes of the other type 1s, of various ages and getting an insight into how they do things differently.

Some of them had been diagnosed a few years, other 25+ years, so there was quite a range.

I was the only person on the course who already carb counted properly. So I was amazed to see how others judged how much insulin they needed for food. Most of it was just guess work and routine from eating similar things and remembering how much they took the last time they'd eaten it. And by the sounds of it, this caused many hypos and high readings.

Next week we get to hear everyone's HbA1c's and we have to discuss each others diaries from the week in between the course days. So we have to record all our BG readings, food, insulin amounts for food and correction dose amounts from now until next wednesday. Should be easy enough as I record all this everyday anyway on my iPod Touch, much to everyone's amazement. I think a few of the others thought I was a bit obsessive by recording everything everyday, but to be honest it doesn't take very long and it helps me when I want to look back over my readings, amounts etc, to make changes.

I asked if they'd give me my HbA1c today as I'm very intrigued to see what it was. You may or may not remember my first 6 monthly HbA1c after diagnosis being 5.9% to which I was told was far too low and I was having way too many mild hypos. I was told to get my next HbA1c between 6.5-7.5% and to be having no more than 1 hypo per week.
After a week of being deflated at being told all the effort I'd put in was basically trying too hard and to allow myself to have higher levels.
I took this on board and have tried to keep my levels slightly higher throughout the day, but before I was aiming for a 4 mmol window, 4-7, but now I was aiming for a 1mmol window, 6.5-7.5 which proved very difficult as I tended to stray into double figures way more times than I'd have liked to.
Anyhoo, my latest HbA1c before this course turned out to be........... drum-roll..............6.5%🙂 So I was very pleased with that. And I'm also only having about 1-3 ish hypos per week, which is way better than my 5-10 per week with my 5.9% HbA1c.

So fingers crossed my consultant won't 'tell me off' next time I see him in August. But with a HbA1c like that and me not having bad hypos or fear of hypos I think I can guess how the conversation of me asking about pumps will go next time

They also asked us about BG meters, which ones we were using etc. They then told us that the hospital was going to change from just offering the Xceed, to offering the Wavesense Jazz and I think a Freestyle lite, but can't be 100% sure, as the strips for these are much cheaper. Apparently GP surgeries are now trying to 'promote' different meters that use cheaper strips.
Hopefully this will just be, gentle advice, rather than 'forcing' us to use a different meter. Will have to just see if my surgery starts to do this.

OMG I've rambled on for far too long, you probably gave up reading half way through. 😛 Roll on next week

 

[Northerner]

Thanks for this Martyn, very interesting. I've also been told off in the past for too low an HbA1c - at one point it was 5.2% - but, as you have described, it can be very difficult to run your levels higher and still stay within range, because you have reduced your margin for error. Well done for actually succeeding in matching their expectations, but as you suggest it doesn't enhance your pump chances if you are well-controlled under MDI.

Hope you enjoy the remainder of the course. It will be interesting to find out how those who are not used to recording the information find it - it's a habit I got into from the start and I don't think I've ever had a test or injection without recording it! 🙂

 

[Pumper_Sue]

Hi Red, sounds as if you have a good day all round, well done My personal thoughts on you having a pump are very positive. It's people like you who take everything on board and make use of the info. So in my eyes you would be a top candidate for a pump. When you ask for a pump tell him what you feel you will gain from a pump and how you think it will help you regarding quality of life.
I can see where your consultant is coming from regarding relaxing a bit more. This is due to trying far to hard and then becoming burnt out and going off the rails.Which would do you a lot more harm in the long run.

So well done you 🙂

 

[redrevis]

Thanks guys,

I too think it will be interesting seeing people's week worth of results. They are going to be analysed and everyone can pitch in on what they think can be done to improve them. I think a few of them will be surprised when they actually see their info down on paper and have it analysed by the group. Hopefully people won't feel like they are being criticised, but we'll just have to see what happens.

Interesting to see you still record all yours Alan. I can't see me recording everything I eat forever, but I think I will continue keeping levels and insulin amounts recorded. Best way to get an overall picture of what's happening in my opinion.

Regarding a pump, I wish how Sue (and I) think, was how it works, but unfortunately I don't think it would even be considered without me meeting any NICE criteria. My DSN (Sorry DNP as I was told today they are now called) agrees that someone who is as proactive as me should be given the opportunity to use one as I've proven I will put the effort in if I was given the chance.

I've never felt 'burnt out' even when I was trying to keep my control as tight as possible. I think the worst I've felt since diagnosis is when I walked out of my consultant's office after my 5.9% result.
I feel more like I'm failing when my levels are in double figures and I haven't managed to keep them in the recommended target ranges after eating.

I think I will start to relax a bit more now though, knowing that even with these sometimes high results, I can still keep my HbA1c down with fewer hypos and therefore hopefully have a future with minimal complications.

 

[Northerner]

...Regarding a pump, I wish how Sue (and I) think, was how it works, but unfortunately I don't think it would even be considered without me meeting any NICE criteria. My DSN (Sorry DNP as I was told today they are now called) agrees that someone who is as proactive as me should be given the opportunity to use one as I've proven I will put the effort in if I was given the chance....

This is almost exactly what my consultant said to me last time (the first time I'd seen him). Given the economics of the situation though, I can understand that people who try just as hard as me on MDI (or a lot harder, I'm sure, for many people) but who can't get good control ought to be at the front of the queue. I'm aware that, personally, I don't want one enough to be too upset at being turned down.

 

[redrevis]

That's true Alan. I completely agree with those people being at the top to get one. It's the people who I hear about, that just didn't look after themselves, went off the rails etc and were offered one because of this, that bugs me.

Did you know about the DNP thing? My 'DNP' is running the ASPIRE course and said they've been told they can't call themselves 'specialist' any more and have to be called Diabetic Nurse Practitioners instead. Don't know why. Maybe they should be paid more if they are classed as specialists

 

[Northerner]

That's true Alan. I completely agree with those people being at the top to get one. It's the people who I hear about, that just didn't look after themselves, went off the rails etc and were offered one because of this, that bugs me. Agreed

Did you know about the DNP thing? My 'DNP' is running the ASPIRE course and said they've been told they can't call themselves 'specialist' any more and have to be called Diabetic Nurse Practitioners instead. Don't know why. Maybe they should be paid more if they are classed as specialists

No, I meant to say when you mentioned it. I have my 6 monthly review next Tuesday so I will ask the erm...DSN what she wants to be known as! I don't know, first they change the HbA1c units of measurement, now this! Whatever next? They'll be calling insulin pancreajuice next! 😱

 

[Freddie99]

That being run by the team at RSCH? I'd be interested to pop along and see how they run things.

 

[redrevis]

No Tom, it's a North Derbyshire Course.

 

[Freddie99]

Now why the hell did I think you were Brighton based...

 

[redrevis]

 

[Blythespirit]

I'm glad you had a good first session on your Aspire course Martyn and thank you for your interesting posts. I know as a T2 I wont be able to do the Aspire course myself but I have heard of it and wondered if it was any good as we attend the same hospital.

Interesting you mentioned the change in meters. When I was started on Byetta in April my DSN gave me a new meter and told me to stop using the Accu-Check Compact Plus that I'd been using as NED PCT want all diabetics to use one of two new meters. The Jaz you mention or True Result which is the one I'm now using and getting strips for. I had never heard of it before and thought the meter itself looked and felt very flimsy. Two months on and I think it's okay...just okay. I do like the Twist version that they sent me as a spare though. Supposed to be the smallest meter in the world and great for when you're out and about. It clips on top of the strip pot and comes in a choice of colours. I got a pink one because I could! 🙂

http://www.northcoastmed.com/trueresult.htm

I look forward to reading more about your experiences. Good luck with it. XXXXX

 

[Steff]

Martyn glad you had a good first session, hope you get alot more from the rest of the course x

 

[trophywench]

Re Specialist Nurses - it's my belief that they now all have to have a Uni degree in their specialism, only because I know someone who has been a senior Mental Health nurse for a long time and is now doing his degree to get that Tag. It also enables them to leave him in charge overnight rather than there having to be a doctor there! he is cheaper apparently .........

 

[Phil65]

Martyn,

I attended a SAILING course (Self Adjustment Insulin Lerarning In Groups) sounds like your ASPIRE course, it was run by a DSN and a dietician. I too was amazed by the lack of understanding of some of my fellow type 1s and also I was the only one that was carb counting (I didn't for 13 years!) Many of them had had diabetes for 20-30 years! This course was a requirement before a pump was to be considered, i.e you had to prove you could carb count, Insulin/carb ratio, take corrections etc,etc........then if 'they' thought you were capable a 'tick' would be put in the box. I didn't meet NICE criteria for a pump as my control was good, however, they knew I wanted a pump so the DSN 'lied' for me to support my plea. In their opinion, if you 'can't look after yourself' on MDI there is no way you could on a pump. Good luck in getting a pump.......thery are not going to get my pump back!! 🙂

 

[Northerner]

On the course I did we were all newly-diagnosed except one person who had been diagnosed about 5 years. He was under the misapprehension that you only needed to count sugar in food - no sugar, no insulin needed 😱

 

[redrevis]

Interesting you mentioned the change in meters. When I was started on Byetta in April my DSN gave me a new meter and told me to stop using the Accu-Check Compact Plus that I'd been using as NED PCT want all diabetics to use one of two new meters.

See this is what worries me. At the moment I don't think they have a right to dictate which meter you can use. I just hope that doesn't get brought in.
True Result, that's the one, I knew I remembered wrong. I'd never heard of it either. To be honest it looked nice and small, but a bit cheaply made.
The DSN running the course said this was because of Xceed having expensive strips which cost ?50 a box. I quickly pointed out that there is no way they cost ?50 a box as when I last looked about 6 months ago you could buy them from an online store for ?25. Looking now you can get them for ?20 a box, and pharmacies will get them at wholesale prices. The Jazz and True Result strips are also about ?20 a box, so it looks like these 2 new meters won't really be saving any money at all as the strips cost the same price. Unless it's the wholesale prices that have a more dramatic difference. Who knows.

I attended a SAILING course (Self Adjustment Insulin Lerarning In Groups) sounds like your ASPIRE course, it was run by a DSN and a dietician. I too was amazed by the lack of understanding of some of my fellow type 1s and also I was the only one that was carb counting (I didn't for 13 years!) Many of them had had diabetes for 20-30 years! This course was a requirement before a pump was to be considered, i.e you had to prove you could carb count, Insulin/carb ratio, take corrections etc,etc........then if 'they' thought you were capable a 'tick' would be put in the box. I didn't meet NICE criteria for a pump as my control was good, however, they knew I wanted a pump so the DSN 'lied' for me to support my plea. In their opinion, if you 'can't look after yourself' on MDI there is no way you could on a pump. Good luck in getting a pump.......thery are not going to get my pump back!!

Well that does inspire me to have a hopeful thought that there may still be a slim chance then. I thought it was the consultant that made the decision not the DSN. Since diagnosis I haven't really seen my DSN at all, always my consultant at regular intervals. I think you dropped on super lucky there was a DSN willing to lie for you to get you a pump. I'd be same as you though, doubt I'd be wanting to give it back 😛

On the course I did we were all newly-diagnosed except one person who had been diagnosed about 5 years. He was under the misapprehension that you only needed to count sugar in food - no sugar, no insulin needed

Wow, I wonder how he ended up thinking that. Maybe misunderstood advice or something. Was he rather shocked when it was explained how wrong that was? Surely he must have wondered why his levels were always high?
These courses must help people dramatically if they've been going through years of just guessing and getting it wrong.

Martyn glad you had a good first session, hope you get alot more from the rest of the course x

Thanks Steff, I'm sure I will. I'll report back on how the next one goes.

Re Specialist Nurses - it's my belief that they now all have to have a Uni degree in their specialism, only because I know someone who has been a senior Mental Health nurse for a long time and is now doing his degree to get that Tag. It also enables them to leave him in charge overnight rather than there having to be a doctor there! he is cheaper apparently .........

That makes sense I suppose. So if you need a degree in order to get the specialist title, then they must be getting paid more if they have that title. Makes you wonder if the DNP's have been downgraded in pay maybe, to save money.

 

[Northerner]

Costs for strips to the NHS are all pretty similar, regardless of meter, apart from these new, relatively unknown ones that are trying to undercut the big companies cartel. You can find the costs to the NHS of anything on prescription by registering with the British National Formulary website (free).

Trueresult strips cost ?14.36 for 50, Accu Chek Compact plus strips are ?15.29 for 3x17strips (51), Accu Chek Aviva (which I use) are ?14.89 for 50. Not much difference, although if you are purchasing millions I guess the pennies all add up.

I think the confidence in the meter and supplier, plus in many cases accessibility to software should also be factored into the equation.

 

[redrevis]

Oooo I didn't realise that anyone had access to that information. I've registered on http://bnf.org/bnf/ but cant seem to find where you would search for prescription items. I probably just can't see the wood for the trees😛