Carb counting whats next ?

[MegaMan]

Hello everyone I've been waiting since march 2010 to do a carb counting course which I already know how to do but I still have to do the course :roll: once I have done the REACT course what happens next, I haven’t really been told so I wonder if any of you know.

Many thanks

 

[noblehead]

Hi Megaman,

Not quite sure what you mean by ''what happens next''..........do you mean is there a follow-up after the REACT course?

Nigel

 

[MegaMan]

yes what will happen after the REACT course.

thank you for the reply.

 

[cugila]

The only thing I know about the REACCT Course was from back in 2006......in the Gloucestershire NHS Trust area. This was for Type 1's I believe. Is this the course you were on ?

Have you discussed the other courses available to you with your Diabetic Team ? However, I seem to recall from a previous post that you didn't use them any more ? If that is the case maybe that is why you haven't been oferred any other courses ?

DAFNE for Type 1 and DESMOND for Type 2........as to which would be suitable for somebody with CFRD I think you would have to discuss.

 

[MegaMan]

The diabetic consultant I was seeing is of no help to me, she wouldn't teach me to carb count and said it would be too much work to teach me. She also said that the pump would be a waste of time. In the end this is why I taught myself. My CF team referred me to a fantastic consultant who deals with giving people pumps in the Gloucestershire area. He said that I would be a good candidate for the pump and that it would help me. He is also the one who has told me go on the REACT course. I will be doing the course on the 4th of January 2011

 

[cugila]

So it is that course.....OK. seems to be the Gloucester NHS Trust course only. Not sure if we have anybody who has done it ? Maybe, maybe not. :?

Called ‘REACCT’ (Re-education and Carbohydrate Counting Training), the programme provides insulin-treated diabetic patients with advice and information on nutrition, exercise and how to cope with the social effects of their condition.

While you are on the course and have the people there surely it would be logical to ask there what happens next.......this Consultant that recommended you go on it surely would be the ideal person to ask what happens afterwards.

I am really not sure that we have anybody here that is able to answer your question.

Anyway, it's New Years Eve.....I shouldn't be here. So I hope you get some more helpful answers, but for me.......that's it for 2010.......back in the New Year.

Happy New Year to you ......

 

[MegaMan]

Yes that is the course I'm doing. Yes I will ask them what happens next. I just thought that people on here would know but I guess not :?

 

[jopar]

Megaman

The REACT will be your hospital version of the DAFNE course, not all PCT's have taken up the DAFNE/DESMOND course due to the cost involved so they created their own cheaper version, i.e Plymouth call theirs PASTIE!

As you have CF you won't be classed as a T1, you won't come under the NCIE guidelines for funding, as these are T1 specific. You would have to apply to your PCT Expectional Circumstances Commitee, who can provide funding in exceptional circumstaces for patients treatment that is goverened by NICE guidelines...

Your diabetic consultant should really be working closely with you CF team, as there are many difference in how your treatment would differ from that of a standard T1 or T2 diabetic, more so around your diety needs, which is high fat and caloire rather than the moderate carb, high fibre and low fat diet that is normally reccomended to a diabetic...

So don't be suprised if you have a battle on your hands to get the necessary funding, a lot of T1's who fit the NICE criteria for funding, have a battle to get funding it took me 3 years to obtain my funding for my pump

Update

The commitee is called Special case review panel, if at first they say no you can appeal against their dession

 

[MegaMan]

Thank you very much for your reply. I'm use to battle on so I’m quite prepared for that :lol: as soon as I have a clearer picture of what is going to happen I will post on here just in case anyone is interested in what's going on.

 

[jopar]

I would have look at this site http://www.input.me.uk/

You will find a lot of information concerning pumping, funding and the NICE guidelines, if you contact them they will be able to help if you do need to battle for funding, they were a great support when I started my battle...

Yes please do let us know how you get on.... It's nice to see how people are going on and if sruggling we may be able to give some helpful input, I know what it's like to battle for funding and the frustration of battling for funding, and in my case I fitted the criteria for funding, I've been pumping for almost for 3 years and from the start I've proved that I benefited from insulin pump thearpy..

Good luck, and if you ever need any help just give a shout

 

[noblehead]

yes what will happen after the REACT course.

thank you for the reply.

Not sure about the REACT course, but the DAFNE course do a follow-up 8-12 weeks after completion where patients can discuss their control and ask further questions if need be.

Nigel

 

[MegaMan]

I'm not going to write everything that went on because it would take me ages and I'm going to bed in a minute ready for work tomorrow. So I turned up for the carb counting course they said they had changed the time so I drive back home (a 1 hours journey) Then returned again and they said I couldn't do the course (again I'm not going into it) She also said I knew what I was doing and obviously have done a lot of work to get to where I am. She said she has never had a CFRD on the course and that she doubts I'd get a pump even though I inject 10-15 times a day. I would like to add the consultant who deals with the pump said that I would be a good candidate for the pump. I've rang his secretary and told her everything that went on, she said that what went on was not acceptable and she would speak to the consultant, I have also informed my Cystic fibrosis team as they were the one that referred me. I have now left it in their hands to sort out.

I will keep you all informed as to the progress of this situation

 

[MegaMan]

I’ve been speaking to the Diabetic receptionist today to ask when I would be seeing the consultant, she told me I’m not down to be seen now until December. I told her that I really needed to be soon a little sooner as my situation needed sorting, she has made an appointment for me to see the main man on the 7th of February. I have many questions which need answering, like why people are not doing their jobs. I will write these questions down so I have a plan of action for when I see him.

Hopefully next time I write I will have a better picture of what’s going on.

 

[MegaMan]

Finally some good news. I saw the consultant on Monday and armed with my brain, books and a fancy not-pad that I’ve been using to write all my info in. Anyway it would seem that my old diabetic team have been interfering with the pump consultant and they had written him a letter saying they would take over my diabetic needs and that a pump would NOT help me. Well that was last year around august. He was very concerned that in fact they have done nothing to help me and I have been left on my own to fend for myself in my diabetic battle lol So with this misunderstanding out the way I showed him my books I’ve been reading and all the work in my note-pad I’ve been doing. He said he was very impressed and has never seen a patient do so much work on their own with no help. The fact I had taught myself to carb count and worked out my insulin to carb ratio out all by my little self impressed him greatly and he could see I was truly committed to the pump if I got one.

He said that he is 100% backing me with getting a pump and I would be a very good candidate so all good news and I was very happy with how the appointment went. He also said I do not need to do a REACT course because it is clear from my notes I know what I’m doing. I also took my meter with me, which he also connected to his computer to see my results. Now I move onto step 2. Finally I am getting somewhere.

Again I will keep you all informed as to what is happening

 

[MegaMan]

I got a call today from the diabetic nurse saying that they have had a discussion and decided even though I can carb count I still need to do the REACT course. I told her that this would be an absolute waste of time but she said it would be unfair on all l the other people who get a pump because they all have to do the course. It's funny because she even said on the phone that I'm way ahead on my carb counting :lol:

1 step forward 2 steps back. So this is now going to delay me in getting any further with getting a pump. It seems the harder you work the more I'm pulled back, I'm very close to giving up and sticking with my pen.

 

[iHs]

I got a call today from the diabetic nurse saying that they have had a discussion and decided even though I can carb count I still need to do the REACT course. I told her that this would be an absolute waste of time but she said it would be unfair on all l the other people who get a pump because they all have to do the course. It's funny because she even said on the phone that I'm way ahead on my carb counting :lol:

1 step forward 2 steps back. So this is now going to delay me in getting any further with getting a pump. It seems the harder you work the more I'm pulled back, I'm very close to giving up and sticking with my pen.

Hi

I had to wait 9 months before I finally got to pick up my pump :roll: I didn't need to do a carb counting course as I had already worked out how to calculate insulin to a carb ratio before I saw a consultant at my hospital. I did however see a dietitian twice who looked through my bg monitoring diary and noticed how 'tight' my bg levels were and advised me to lower my insulin a bit which was the same as what the consultant had recommended. On my second visit she asked me a bit more about my knowledge of carb values of certain food that I eat. Once she was satisfied that I knew what I was doing with my ratios etc, it was all systems go.

My advice to you is to be patient and go on the carb counting course even if you feel it is going to be a waste of time. Time does fly by and before you know it, you will be able to get yourself a pump. Although loads of people will think that if they meet the NICE criteria and a consultant says yes to pumping, funding still has to be applied for to a PCT and that can take some time depending on how often the consultant applies for funding, so your hospital might only apply twice per year.

In the meantime, read up on all the pumps. You can find out an awful lot from reading messages on forums about the pros and cons.

 

[ebony321]

Hi,

Seems like youve been treated quite unfairly!

But hats off to you for acheiving so much by yourself!! As many people i waited over a year for a pump. I also waited a while to go on the DAFNE course. But it was worth it!! Although my diabetes team were very supportive!

I would still go on that course, as it us usually a requirement. But in your case your more like proving that you already have the know-how! And you may even find you would learn more. And meeting others with diabetes and sharing your experiences is something of great value

Must seem like a battle! But keep going! The determination you have will get you far! I hope you reach that finish line soon. Then the next battle begins to master the pump.

Good luck

 

[becki]

Hi,

I agree with what people are saying on here well done for doing so much yourself.

In my area (nhs fife), we don't have access to any of these carb counting courses, we deal directly with the dietitian after a few food diaries and meetings I was given random food to prove i could work out the carb content and asked to show how i work out my corrective dose etc.

The annoying thing about the pump is that every pct can do it differently,

Good luck and keep us informed!

 

[ams162]

hi

i like u had already been carb counting a while when i went on the choice course (childs version) and the only reason was to be able to qualify for a pump the nurse said she was worried i would be bored as i already knew it all, however i found the course of benefit to me by meeting other people in the same boat trying hard and getting no where and not only that it never hurts to hear things again.

most people wait a while for a pump so in that respect ur not on ur own for me having to fight so hard made the pump worth while when we got it and made me determined to make it work

hope u get some more answers soon

anna marie

 

[MegaMan]

Next week is my carb counting course 8th march. Unfortunately I have caught a nasty bug. I tried to beat it but I was fighting a losing battle so my CF nurse come out on Monday and set me on some intravenous antibiotics, which my dad is helping me with. But I'm sure next week I will be well enough to attend the course even if I just sit in the corner very quiet. Thanks for all the information and encouragement I will go into the course with an open mind willing to take on board what they have to teach. So my next log :mrgreen: will be how it all went.