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Pump Exhibition - INPUT Out West event, Truro 5-6 October 2013

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everydayupsanddowns

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Just in case you haven't heard of this there is an INPUT event coming up in Truro early in October. For anyone living within reach who has just started or is just about to start pumping it should be a great opportunity to chat to pump users, handle equipment, quiz manufacturers and pick up useful info.

I'll be going, so may see you there!

http://www.inputdiabetes.org.uk/input-in-person/
 
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Just a quick bump for this event... coming up next weekend.

Great opportunity for anyone interested in, considering, or who has recently started on a pump.

Lots of companies there to show off their latest versions etc, plus presentations/info/chance to chat to people in a similar situation.
 
Definitely worth a trip if you're in the area. I went to one last year and it was great to have a chat with all the pump suppliers and play with their stuff. And of course to meet some other pumpers.
 
I will be meeting up with Mike there on Saturday. It would be great to meet some other members & get to know them. Just been notified that my own pump has arrived and I shall be picking it up on 9 October.
 
It's to far down for me to travel, but hope everyone else who goes has a good time 🙂
 
I wish they had more of these!!! It would be great to talk to the pump manufacturers (I have a few questions) and other pumpers face to face. I 'd love to go but Cornwall is a bit far to travel for me.
 
There's a list of other events around the UK on that page Phil - have a look to see if there are any near you?
 
I have blogged my experience at the event

Hi all

I have written a blog about my day at the INPUT event - you can read it here http://www.diabetes-support.org.uk/diabetes_blogs/?p=1336 I'm hoping Mike will write his version of the day and certainly fill us in on what happened at the evening dinner.

It was a very interesting day and I learned a lot. I know it was aimed at T1s and pumps, but there was lots of news and new products that would be interesting to T2s on D&E and anyone on insulin whatever type you are.
 
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Unfortunately I didn't see this post until tonight - I would definitely have attended if I had seen it before. I only live up the road too! 😡

After reading the blog, I just wanted to add that it hadn't been given any publicity locally at all.
 
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I wish I had PMd you Newbs because I particularly thought of you, knowing you were very local.
 
everydayupsanddowns said:
Shame that it was not advertised locally. Lesley and the team really tried, but there seems to have been some resistance from some HCPs?

I wrote a post about it here: http://www.everydayupsanddowns.co.uk/2013/10/input-out-west-truro.html
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+
I suspect there was a lot of resistance 🙄
Having met the crew before I wont comment any more in that dept.
Except to ask did any of the so called pump consultants attend?

IMHO the event was far to far west for the west country pumpers or potential pumpers to attend.
Perhaps try holding an event a bit more towards the North next time as the natives are a bit more pump friendly.

So what did you learn about the VIBE and CGM plus the DanaR pump, so did like that pump but couldn't read the screen :(
 
Pumper_Sue said:
+
I suspect there was a lot of resistance 🙄
Having met the crew before I wont comment any more in that dept.
Except to ask did any of the so called pump consultants attend?

IMHO the event was far to far west for the west country pumpers or potential pumpers to attend.
Perhaps try holding an event a bit more towards the North next time as the natives are a bit more pump friendly.

So what did you learn about the VIBE and CGM plus the DanaR pump, so did like that pump but couldn't read the screen :(
Click to expand...

Yes I never did ask why Truro was selected as the venue. But several people did travel to get there - several like me from as far as Bristol/Cardiff and one from Preston!

No pump consultants that I saw/chatted to but I did have a great conversation with a lovely (local) DSN and there was a colleague of hers(?) that she exchanged a few words with in passing while we were chatting. I should have been better at quizzing everyone as to who was who!!

Didn't speak to the Dexcom guy about the DanaR, but he had some very compelling data for CGM use on a laptop - just a shame there aren't more 'proper' clinical studies (RCTs) published that show the same IMO

New version of the Combo seems imminent (with pre-loaded reservoirs I think), and the Animas rep was great at taking me though lots of nitty-gritty detail on the Vibe which I was impressed with. Starter pack for CGM on the Vibe was ?500 if memory serves which includes 4x sensors and transmitter (Medtronic were not there to compare).

The current Vibe CGM is still using the old data analysis algorithms while the stand-alone handset (Dexcom G4) has been updated and is supposed to perform better as a result.

All in all very interesting!
 
I wonder if Truro was selected so that people with diabetes woke up to the fact pumps were available on the NHS, they are a rare commodity in Cornwall.

I would have loved to have met Professor Pickup though. When I started my quest for pump funding he kindly replied to my emails and was very helpful with pointers in the right direction.
He sees no reason not to use animal insulin in pumps either and used to put people onto the pump using porcine insulin. He had never used bovine though but said no reason not to if that was my choice.
I emailed him my results and explained how I worked my basals out which he was pleased to know about.
 
Can I just say something here in defence of the local HCPs. I had an appointment with my DSN yesterday and after we had done the initial training for my pump and I had picked up no less that 5 large boxes of equipment, our conversation turned to the INPUT event. My DSN is quite upset about the comments which suggest that there was resistance locally. She was unaware of the event until she was emailed by both myself and the rep from Roche. No one in the Diabetes clinic was informed directly by INPUT. Apparently someone from INPUT rang the main matron in charge of the Royal Cornwall Hospital about a week before the event, but the message didn't get through to the diabetes department. Dr Crealy (one of the Endos who is really lovely and forward thinking) was particularly upset as he would have liked to have attended and particularly would have liked to meet Prof Pickup.

My DSN did attend and brought along the DSN who deals with children. She also said she would have been delighted to have informed the T1 support group which she runs and any/all T1s who have shown an interest in pumps.

I think the attitude in Cornwall has changed with regard to pumps and they are becoming quite pro-active. At the moment approx 3.5% of T1s are on pumps but new people are being approved and started on an ongoing basis. My start was delayed by an issue which was unavoidable. There have been problems with the CEO of the trust being dismissed and this has resulted in new budgets having to be approved, until the budgets were approved it was not possible to move forward for any of the departments within the hospital, but this has now been resolved and I am told that if people are interested in pump therapy they should make it known to their DSN for referral.
 
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I think the attitude in Cornwall has changed with regard to pumps and they are becoming quite pro-active. At the moment approx 3.5% of T1s are on pumps but new people are being approved and started on an ongoing basis. My start was delayed by an issue which was unavoidable. There have been problems with the CEO of the trust being dismissed and this has resulted in new budgets having to be approved, until the budgets were approved it was not possible to move forward for any of the departments within the hospital, but this has now been resolved and I am told that if people are interested in pump therapy they should make it known to their DSN for referral.
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With respect Patti, you have been handed your pump on a plate.
Reading other forums regarding Cornwall's attitude to pumping tells a different story to what you have posted.
I have been following one lady's quest for a pump and it's almost mirror image to the problems I had and my problems obtaining pump funding were over 6 years ago. So the problem still exists.
Patients are also expected to travel to Truro for a pump clinic well hello that's 5 hours driving for me and all the other peeps in far flung places of Cornwall.
I'm just glad my GP stuck his neck out for me and he is my named medic for my pump.
There's also 1 pump DSN for Cornwall as well, so unless the nurse works 24/7 365 days of the year there wont be many pumpers in Cornwall.
 
Well it's a mystery to me.

Speaking to Lesley, she is sure they did their utmost to promote the event, well in advance. It is INPUT's biggest single event this year and the one they 'put all their money into' so it would not make sense for them to keep quiet about it. The Omnipod peeps apparently 'sponsored' 4x places at the dinner on Sat night, 2 for Omnipod reps and 2 for local HCPs so that they could mee/chat to Dr Pickup. In the event no HCPs took up those places and the Omnipod reps did not attend either. So the question is... Who did they ask? Anyone? Did people actually try it down?

Just seems like complete mis-communication. Everyone seems to be feeling slightly let down by everyone else, and now the event has passed lots of people are regretting not attending, or being told about it. But we have no way of knowing what invitations went where and where they ended up! :confused:
 
With respect Patti, you have been handed your pump on a plate.
Reading other forums regarding Cornwall's attitude to pumping tells a different story to what you have posted.
I have been following one lady's quest for a pump and it's almost mirror image to the problems I had and my problems obtaining pump funding were over 6 years ago. So the problem still exists.
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Sue. I hardly got it offered on a plate. I spent 8 years battling a wrong diagnosis. I spent 3 months with my heart in my mouth waiting for the results of the test I had had to fight for. I always kept myself informed and educated myself with no assistance from any HCP and were it not for the immaculate records and documentation I produced (which were hard work) I would not have got it. As it was I was able to prove that 2 injections of basal a day would never work for me and that in the meantime I had suffered no less than 79 hypos in 90 days, all at the same time of day when I needed less insulin. Getting rid of the hypos by decreasing my basal resulted in high teens at another time in the day. So with due respect I did not get it "handed on a plate", it was due to my own determination in removing any barriers I came up across. I'm actually quite surprised at my own tenacity.

I am sorry that other people are not getting pumps but perhaps they haven't put in the work that proves that the pump will solve the problems they are experiencing and I will willingly and happily help them towards that goal.

Cornwall is a difficult geographical county, sticking out into the ocean as it does, but notwithstanding I can drive to Exeter (in Devon) in 2 hours. I know many people need to use rural routes which are slow at best, but surely those in the eastern part of the county can access Derriford? I have to ensure I leave an hour before my appointments to get to Treliske just in case there are traffic hold ups, but even so, to me it is worth it and I blooming HATE driving.

Mike it seems to me a massive miscommunication issue. ATM I am battling to get the petition to David Nicholson and it's a blooming nightmare. I can get delivery receipts but no one seems to be willing/or maybe it gets nowhere - to give a read receipt!
 
A banner up at the Alverton Manor would've been a good start, loads of people pass the Alverton every night after work, usually crawling past as the traffic is always at a stand still at 5pm. This would've caught the eye of many people, including myself. If the diabetes clinic knew about it, they could've send a note to all insulin users on their database... It is a shame that nobody seemed to know about it in the local area. I would love to know who was invited/informed, but as you say this is impossible to know.
 
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