# Dont want to get my hopes up, but...



## hyper-Suze (Oct 1, 2011)

Heya all you old school pumpers, and new! Hope your all enjoying this lovely late summer...

So I have been whinging on and on to my DSN& head consultant for a pump for 3 years. I was badly controlled before then, not trying, not really wanting to try either. All of my knowledge of diabetes was limited and outdated by 8 years. 

Since then I have reigned in my control(HBA from !2% to 7.5%), worked with MDI, done dafne, worked really really hard with DSN and learned/absorbed all I can about pumps. 

I got a letter yesterday from my consultant(hand written & signed might I add) that following our numerous converstations I am going to be assessed for a pump and prior to putting my case forward for funding, I need to be educated and have a pre-pump assessment.

As you will have all been through the pump motions, what does this mean...am I getting closer or are they dangling that carrot in front of me??

I realise that even if I get all this assessment done that my case can still fall at the last hurdle as NICE can decline but how long does this process now take and what is involved?

Appreciate any comments or advice!!!


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## margie (Oct 1, 2011)

I am sure one of the Pumpers will be along with some advice. 

I would just like to wish you well with the journey ahead.


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## Northerner (Oct 1, 2011)

Suze, you might like to email the people at INPUT to see what you might expect: http://www.input.me.uk/

Good luck!


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## Robster65 (Oct 1, 2011)

Just want to second what Margie says and wish you luck.

Rob


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## Steff (Oct 1, 2011)

Suzie good luck with the pump you deserve this x t/c


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## Ellie Jones (Oct 1, 2011)

Each clinic has there own way of doing things so difficult to say what sort of time scale

it's the Consultant you've got to get the go ahead from, the PCT can't denile fundingi if the consultant says you need a pump..

When it comes to NICE guidelines you don't have to fit all of it, just parts of and your clinic or PCT can't not chose the parts of NICE they want to use..

You do have a very good HbA1c so look at how many hypo's your are getting, and what sort of highs as well as what work you have to put in to achieve these figures..(quality of life) if you've got a reasonable good idea of how pump thearpy works..  So perhaps take some data with you, high light a couple of hypo's and say I had this hypo because perhaps you injecting with one thing planned, but plans changed at the last minute..  If I had a pump I coud have perhaps avoid or limited the hypo by using the pump to adjust dose to suit the new plans better!

I had that high because I had  a pizza/chinese or perhaps pasta when eating these foods I spilt my quick but due being a evening out with friends I forgot my second part of the dose, if I had a pump I could have programed the my bolus avoiding the high due to a missed jab etc..

Good luck for our assessement and hopefully they won't keep you hanging around long


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## Monica (Oct 1, 2011)

After it had been decided that Carol could have the pump, they said that we would need to see the psychologist first, so that he could find out if Carol (and I) understand enough to cope with a pump. Also that we would need to see the dietician again for a refresher about carb counting.

But we were told this was just a formality. The psychologist came round to our house and stayed for about 2 hours. He sent a very detailed report to the consultant (our GP and I also got a copy) to say that in his opinion Carol is a good candidate for a pump. We went to see the dietician, but the 45 minutes we were there, we talked about carb counting for about 15 minutes. 2 hours later Carol was attached to the pump, pumping saline.

Good luck


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## shiv (Oct 1, 2011)

Ellie Jones said:


> it's the Consultant you've got to get the go ahead from, the PCT can't deny funding if the consultant says you need a pump...



This.

The way people get funding for a pump is actually really simple: your consultant writes to your PCT stating they think a pump is the best thing for you, and the PCT are obliged by law to provide funding.

NICE themselves don't actually have any literal say in this process. Your consultant will have decided that you meet NICE guidelines enough to need a pump, so that is what they will tell the PCT.

If it was me - and I am VERY stubborn and demanding in situations like this - I would call your DSN and ask to be booked in for the pre-assessment ASAP. It might be worth asking them, gently!, what is stopping them applying for funding at the moment?


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## hyper-Suze (Oct 2, 2011)

Wowza, thanks everyone! Sorry if my knowledge about funding/PCT/NICE seemed hazy, my consultant seems to have, in the past, 'fobbed me off' by saying the NICE people wouldn't let me have a pump as I hadn't fully tried the MDI regime(which I have now)...

Will contact my DSN to see how quickly I can get this pre pump assessment going.

Psychiatrists? OMG, they scare the heck out of me! I always seem to say flippant comments which could get me into trouble! I could fall at the last hurdle of the psychiatrists report on suitability!!!!!!

Will deffo get on the case and not give up pestering them Shiv! Thanks for the pointers I can make for my case EJ too, they are really good points and true to daily life with diabetes!!!


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## Hazel (Oct 2, 2011)

good luck with the pump thing - but more than that - I just wanted to say wow to the reduction in HbA1c, superb!!!!


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## hyper-Suze (Oct 2, 2011)

Aw thanks Hazel, although it hasn't been an overnight success! It has taken 3 years 12% to 10.7% to 8.6% to 7.5% in august!!!!! Fingers crossed for the pump though!!!!


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## Phil65 (Oct 3, 2011)

hyper-Suze said:


> Wowza, thanks everyone! Sorry if my knowledge about funding/PCT/NICE seemed hazy, my consultant seems to have, in the past, 'fobbed me off' by saying the NICE people wouldn't let me have a pump as I hadn't fully tried the MDI regime(which I have now)...
> 
> Will contact my DSN to see how quickly I can get this pre pump assessment going.
> 
> ...



Hi Suzie,  as others have said PCTs and practices differ in their protocols, I didn't have to see a psychologist, I didn't meet NICE guidelines as my HBA1c was good enough on MDI.  I had to push to get a pump and reckon I might be as stubborn as Shiv!! I had to attend a DAFNE equivalent course to prove I could carb count, knew about ratios and understood diabetes etc,etc.  I wanted a pump for quality of life, no 2 days are the same routine for me, sport and work different from one day to the next.  My consultant finally agreed that MDI was not ideal for me and pump therapy would be better.  Once I had the tick in the box from my consultant the PCT have to fund.  Been pumping for nearly 6 bmonths now....can't wait for closed loop system next!


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## hyper-Suze (Oct 3, 2011)

Thanks Phil, yes I think I need to sit down and think of my case, points which are valid for me and hopefully the fact that the consultant wrote and has instigated the next step is a good sign! It has, after all taken me 3 years to prove to him that I am serious about control after 8 years of not caring. I just dont want to get disappointed or stuck in the system!

Closed loop? Whats that? (If I had to guess, I would say maybe a meter which can also check the levels and use the intellegence to correct the insulin being infused?)


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## Phil65 (Oct 4, 2011)

hyper-Suze said:


> Thanks Phil, yes I think I need to sit down and think of my case, points which are valid for me and hopefully the fact that the consultant wrote and has instigated the next step is a good sign! It has, after all taken me 3 years to prove to him that I am serious about control after 8 years of not caring. I just dont want to get disappointed or stuck in the system!
> 
> Closed loop? Whats that? (If I had to guess, I would say maybe a meter which can also check the levels and use the intellegence to correct the insulin being infused?)



Hi Suzie,

Closed loop system is where a CGM works together with a pump.....almost like having a working pancreas.


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## Ellie Jones (Oct 4, 2011)

I very much doubt you will be asked to see a psychologist as part of you assessmet..  

Some clinics choose to use a psychological assessment with some of their children as it can help with assertaining what training and support is rquired for pump therapy


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## hyper-Suze (Oct 4, 2011)

Ellie Jones said:


> I very much doubt you will be asked to see a psychologist as part of you assessmet..
> 
> Some clinics choose to use a psychological assessment with some of their children as it can help with assertaining what training and support is rquired for pump therapy



Phew...thank goodness for that, they (psychiatrists) put the right willies up me!!

Phil-thought so and how ace would an all singing all dancing pump/CGM product be!!


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## Unicornz (Oct 6, 2011)

Good luck Suze hope you fly through the rest of the process! Just also wanted to add that I didn't have to see a psychologist before I got my pump, so you might not have to worry about that at all  Also, well done on the HbA1C that's a brilliant reduction!


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## hyper-Suze (Oct 10, 2011)

Unicornz said:


> Good luck Suze hope you fly through the rest of the process! Just also wanted to add that I didn't have to see a psychologist before I got my pump, so you might not have to worry about that at all  Also, well done on the HbA1C that's a brilliant reduction!



Cheers Ilse! 

I think since reading my letter the penny dropped. I always felt that they(nhs) rewarded those with good HBA's and left those struggling, to, well, struggle...HOWEVER, I can now see that it sn't the case, it is those who have learnt and worked with MDI and understand how carbs, exercise, sickness, stress, hormones, weather, etc affect our levels and put the hard work to get the good HBA that I saw. I realise that a pump isn't necessarily the easy option as its the early days which are potentially the hardest and even though it would get easier, that curveballs are still thrown and it is then the education and understanding of diabetes is priceless. I just 'get' that we need to self manage and know diabetes as good as the professionals rather than act reactively to treatment.

Not sure if this makes sense to anyone reading it, it is very hard to convey thoughts and feelings, but understanding it sure does help in having this stupid intrusive illness!!!!

I used to be reactive to treatment and if 3 years ago you asked me how hot weather, alcohol or lypos could affect my levels or what DP or Somogi was I wouldnt have a clue! I look back at how far I have travelled, learnt and now proud in saying that I would respect a pump than to abuse its potential...


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## Phil65 (Oct 11, 2011)

hyper-Suze said:


> Cheers Ilse!
> 
> I think since reading my letter the penny dropped. I always felt that they(nhs) rewarded those with good HBA's and left those struggling, to, well, struggle...HOWEVER, I can now see that it sn't the case, it is those who have learnt and worked with MDI and understand how carbs, exercise, sickness, stress, hormones, weather, etc affect our levels and put the hard work to get the good HBA that I saw. I realise that a pump isn't necessarily the easy option as its the early days which are potentially the hardest and even though it would get easier, that curveballs are still thrown and it is then the education and understanding of diabetes is priceless. I just 'get' that we need to self manage and know diabetes almost better than the professionals rather than act reactively to treatment.
> 
> ...



Good on you Suze....pretty spot on! you need to show your post to your team....you will be on a pump before you know it! 
My pumping 6 month birthday today, I'd be lying if I said it was easy, however, the flexibility it has given me is superb


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## hyper-Suze (Oct 12, 2011)

Phil65 said:


> Good on you Suze....pretty spot on! you need to show your post to your team....you will be on a pump before you know it!
> My pumping 6 month birthday today, I'd be lying if I said it was easy, however, the flexibility it has given me is superb



Oops, a bit late but congrats on the 6mth anniversary for yesterday!!!!


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