# Wee update on my battle



## shiv (Nov 5, 2010)

So, last time I spoke to you guys, I had my trial pump. I still have it, although the hospital are not giving me any more consumables (those of you on facebook will know the whole story).

Thanks to the kind donations of many of the parents (and Tom!) I have been able to keep using the pump as they have been posting supplies to me.

My control on the pump has been way tighter than I have ever been able to manage on MDI. No more morning hypos, no dawn phenomenon, no huge post meal spikes. It's been hard ruddy work as we all know pumps are, but the benefits are so worth it.

Anyway - I explained my whole story (some of which I am not willing to share in public on the forum, but if anyone wants the entire story, I will happily PM it to you!!) to the guys at INPUT, the patient advocacy group for pumps.

The long and short of it is that I will be getting referred down to the team in Eastbourne, where I hope I will be able to get funding for a pump. I have all the logs to show how beneficial it has been and how it has solved all the problems I was encountering with MDI.

INPUT are still working closely with me, and they are speaking on my behalf to lots of people with important sounding job titles about the experiences and care I have had over the past year or so.

I'm hoping this is a really positive step in my battle to get a pump. I am dreading going back to injections, and hoping that will be a short term thing. I confess I feel like I am jumping from the frying pan into the flames as I obviously don't know what Eastbourne will say - but I am keeping my fingers crossed it is positive.


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## Jennywren (Nov 5, 2010)

Shiv my fingers are crossed for you too


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## Northerner (Nov 5, 2010)

You should get to keep the pump and get it properly funded - anyone who argues otherwise is ignoring some very compelling arguments!


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## Twitchy (Nov 5, 2010)

Well done Shiv, that sounds really positive! 

Maybe I'm being naughty, but I can't help wondering if contacting your local media for a fundraising campaign for consumables (with your MP getting involved in the publicity of course!) might shame some funds out of your PCT in the meanwhile?!  I should state that's pure speculation, just thinking out loud! 

Fingers crossed for a better result with Eastbourne!


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## Ellie Jones (Nov 5, 2010)

Fingers crossed for you Shiv...

Seeing the difference to your control, I can't see how anybody can refuse funding your pump..  Any problems with funding I'm will to come down a help you with a sit in until you get it..  Perhaps if we have enough of us just a threat of funding or we be there to carry out a sit in protest until you do might be enough to persuade them

What pump are you using at the moment, as if the consummables are the same as mine, I be more than happy to send a few your way to help out


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## shiv (Nov 5, 2010)

Twitchy said:


> Maybe I'm being naughty, but I can't help wondering if contacting your local media for a fundraising campaign for consumables (with your MP getting involved in the publicity of course!) might shame some funds out of your PCT in the meanwhile?!  I should state that's pure speculation, just thinking out loud!



Very good thoughts...but I am letting INPUT contact the higher powers as they a) know what they are doing and b) have a reputation.

But believe me, if it comes to it, I'll pull out the big guns!


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## Steff (Nov 5, 2010)

Fingers are firmly crossed for you Shiv


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## shiv (Nov 5, 2010)

Ellie Jones said:


> What pump are you using at the moment, as if the consummables are the same as mine, I be more than happy to send a few your way to help out



Medtronic 512 - 1.8ml reservoir. I am actually doing okay with supplies at the minute, thankyou , I will let you know if I am close to running out!


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## bev (Nov 5, 2010)

shiv said:


> Medtronic 512 - 1.8ml reservoir. I am actually doing okay with supplies at the minute, thankyou , I will let you know if I am close to running out!



Oh no Shiv, I gave you different reservoirs then? I thought you would be on 300mls?Bev


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## shiv (Nov 5, 2010)

I've been meaning to email you bev - I will post them back to you - no worries at all - would rather you have them back to use than they sit here no use! Thankyou again though, you know how much it means


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## bev (Nov 5, 2010)

shiv said:


> I've been meaning to email you bev - I will post them back to you - no worries at all - would rather you have them back to use than they sit here no use! Thankyou again though, you know how much it means



Dont worry Shiv, we have too many - do you know anyone else who uses the 300?. Are you ok for sets? Hannah will be visiting in a few weeks (hoorah) and I could give her some sets for you if you need any.Bev


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## Ellie Jones (Nov 5, 2010)

Shiv

You can use refill cartridges a couple of times to eek these out a bit more


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## shiv (Nov 5, 2010)

Oh believe me, I do!


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## sugarfreerach (Nov 6, 2010)

shiv i cant believe the difference in hospital teams especially given how close we are (stafford) my dsn basically pushed me to have one, (so glad she did) and guided me the whole way through it.  I dont realise how lucky i am i suppose!


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## tracey w (Nov 6, 2010)

Hoping it goes well for you Shiv.

I must say i think its a bit cruel to give people a trial pump and then make them wait so long before getting the real thing as it were. Surely they should say yes and give you the trial just to see its what you really want to do?


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## Sugarbum (Nov 6, 2010)

Yep me too.

Im very sympathetic to your cause Shiv, partly because if I imagine myself in that position I would be very upset.

Wish you all the very best and Shiv, anything I can do please just ask.

Big love xx


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