Insulin pumps

[alohanicky2009]

What do I have to have to get a pump? First I have hypos without warning , so fulfil requirement then the funding at my pct is cut , so no pump ! Have serious complications so referred to consultant who says my hac1 are to high for a pump! And the waiting time is long, can t tell me how long as I have to go on another carb counting course another very long wait, this to and fro has been over 4 years feeling depressed , and cheated, argh argh ! Ps never miss an appointment even if ill or hospitalised and notice given that unable to attend it apparently shows "lack of commitment " the consultant is always right which i could be so perfect. They just don t seem to realise that you need help, goals ( mine being to have a pump when injections regime not working so well),

 

[catherinecherub]

Sounds very frustrating.

Have you tried this site for help?
http://www.inputdiabetes.org.uk/wp-cont ... _guide.pdf

You can contact them and explain what is going on, they may be able to help.

 

[alohanicky2009]

No will give it a go , thanks just seems at my pct you either not ill enough or too I'll and the diabetes is to brittle, feels as the goal posts are being changed by the consultants, would be good to have a consultant that is consistent always seem to see a different one who has different ideas that we must try . No one seems to last longer than a year so lucky if you get to see the same one twice, yes frustrating is a very polite way to express my thoughts about this whole topic ,

 

[amberzak]

I feel you. Been fighting for a pump for over four years now


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[alohanicky2009]

I have asked my gp for a referral to another clinic which he will do but my nearest clinic is 200 miles away , and again I am asked am I happy to travel that distance, YES I am happy I want to control my diabetes not it controlling my life!

 

[amberzak]

Again, I totally agree and would do the same thing


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[Lucypieee]

I agree with Catherine, input are the best people to talk to if you're having issues involving being referred for a pump, they have all the NICE guidelines on their website and if necessary will speak to your clinic on your behalf.



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[alohanicky2009]

I fulfil all the NICE guidelines my problem is the consultant stops me from accessing the pump, in Cornwall there is no choice to change consultants as he is the one and only,so have taken the advice given by Input to change clinics if willing to travel 400 mile round trip to the next nearest clinic , do carb counting (but not sure if I getting it right), does that not show that I am committed to try this, but feeling more positive just being more proactive , thanks for your comments does help to feel that I am not alone and pump therapy could ,can and does improve diabetic control.

 

[cally]

Why should you have to travel 400 miles to a different clinic...that is ridiculous.

I had the same problem. I waited ages to do the Dafne course which they said was a prerequisite and then was still kept waiting!
What I did was to start a campaign of writing letters to my consultant and the Diabetes nurses and the local pct. I wrote a letter to one of these each month setting out my reasons for wanting a pump and my dissatisfaction with being kept waiting.
I also got my GP to write to the consultant. I was considering writing to my MP also but in the end I didn't need to.

It didn't come easily as I am not a person who likes to make a fuss! But when I go to clinic now I can see the letters I wrote are still in my folder. So I like to think it worked.

I wish you all the best and hope you soon get your pump.

 

[alohanicky2009]

That is my nearest hospital, but it does have patients that are on pumps, like you I have to do a carb counting course but the waiting time is long , so long that it is " better to not expect it in months" I was told, and again if appointment are missed even if notice is given shows lack of commitment( I admit I did miss a appointment I had a DKA! Then the wait for a pump, tried for a pump with the same consultant over 4 years ago but was not poorly enough and I should manage my highs and lows, I would if I could I want to shout at them, but I guess I don t want to play their game any more because they choose the rules and goal posts that I will never win with this consultant even when I have fulfil the NICE criteria fors years, I ready to change my team player and hope for a fair level playing field.

 

[Lucypieee]

If you fulfill NICE guidelines and there are pump facilities at your clinic (I'm assuming that it does as there are patients on a pump) then what reason has the consultant given to you for you not being suitable to a pump?

From speaking previously with INPUT, your consultant should provide a medical reason why you cannot have a pump.
They cannot refuse one on basis of funding.


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[alohanicky2009]

My hbca1 are high, they have gone up from the previous reading, which does not surprise me as I am having hypo and treating them which makes my bs rise. Also the consultant is the only consultant in the whole of our county

 

[Lucypieee]

My a1c was high (12%), one of the NICE criteria is consistently high a1c (above 8%) despite best efforts with regular testing / injecting / adjusting as necessary.
If there are people at your clinic with insulin pumps, then it is worth speaking to input for assistance in getting you on the right path.


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[Lucypieee]

Also, I'm not sure where in Cornwall you are, but there are 2 pro active pump clinics within 200 miles of Penzance:

Royal Devon & Exeter Hospital, Exeter (199 miles)
Plymouth Diabetes Centre, Derriford Hospital, Plymouth (78 miles)

You can request to transfer to a different clinic of your choice.




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[alohanicky2009]

Yes near Pz have asked to be referred to Exeter , have tested , changed insulin dose , written diaries with food diary and exercise diary with times,

 

[Lucypieee]

You can also request to transfer to Plymouth, which is a bit closer to you.
Exeter do have more than 100 patients on insulin pumps, which is a positive.

But ideally, contacting input (www.input.me.uk) would be the best thing you could do for help with all the no's you seem to be getting.

I'm quite fortunate that I didn't have this kind of issue when asking for an insulin pump, but input try to ensure that insulin pump therapy is available for those whom fit the criteria and would like one.


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[alohanicky2009]

Thank you all

 

[alohanicky2009]

Had my appointment today at Exeter and Devon Hospital, although it looks like a long wait even if it is agreed from all the different ? People that agree that I am suitable for a pump it is a very long way of, there is a long wait for a carb course and they will see me in 6 months time as the person I saw today wants my results in a record book , not the diary I use! I use a page a day with 8 blood sugar tests , what I eat and how much exercise I do ,the last consultant felt it was better to use a page a day as we could put more detail down as most diarys did not have enough space, ahhh! Feel like a scream ! So got to try this for six months at least will this dr be there at my next appointment or will I see someone else who wants to try something different before a decision about a pump , I don t think I have ever seen the same consultant twice am I really unlucky to have no consistency, the rules/ therapy keep changing I am getting so so fed up with it all, if travelling 200miles does not show how committed I am and waiting patiently 6 years to get pump I don't what is , now have complications that perhaps had I had a pump may not have devoloped , will I be around in couple years time ,sorry feeling so down





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[Lucypieee]

Oh no! That's awful. I know there can be long waits for the DAFNE courses, if you carb count already, DAFNE courses aren't a necessity.
Have you tried speaking to INPUT? They may be able to suggest other things to help speed up the process.

I really hope it doesn't take you that long to obtain a pump. Fingers crossed for you.


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[iHs]

All DAFNE courses are doing is slowing up the rise in diabetics wanting pumps and the CCGs coughing up the funding. The online BDEC carb counting course will explain carb counting and adjusting insulin correctly so that bg levels stay within healthy bg targets and also explains the 100 rule for corrections as well. A huge must do though is frequent bg testing and using the results to make the changes to insulin to carb ratios. There is no waiting list for BDEC online carb counting.

My hba1c was a bit too low when I asked for a pump but this was due to worrying about background retinopathy and my GP wanting my a1c down from low 7's to no higher than 6.5%. I did get it down using guess work but most days I experienced bg levels that were a bit too low and needed to eat some carb to lift them up again and this in turn started to make my OH get concerned so with that, I thought enough is enough so asked GP to refer me to see a consultant regarding a pump. After I saw a consultant, I then started to find out through the BDEC site about carb ratios and also there were loads of other websites that also helped explain everything but these websites were all posted on the forum by other members so it was with a bit of help from others that I found my way. I had a lovely D consultant as well though that thought pumps were a good thing so I didn't have to fight too much..