[Diabetes] General Chat and Support Thread

What is an I-port?

gctest50

http://www.i-port.com/

uli84 wrote: »

Anyone having veo pump-can you please tell me how much glucose sensors are? Many thanks.

are you referring to the actual insulin pump or the continous glucose monitoring system?

as i can advise you on the price of EVO continous glucose monitoring system.

graflynn wrote: »

Hello everyone, the attached petition regarding getting a life-changing product for people with Type 1 Diabetes has been doing the rounds for a week. It was started by a parent of a child with T1D but some of us are seeing it as a spring board for making insulin pumps more available to ALL people with diabetes who want them. I hope you can sign, support and share.

Thank you,

https://www.change.org/en-GB/petitions/health-service-executive-of-ireland-import-the-i-port-diabetes-product-into-ireland-and-make-it-available-to-type1-diabetic-children-in-ireland

wow what an amazing bit of kit a must for any child

As far as im aware the pump is available to all Type 1 diabetics in Ireland, you just have to be persistent (REALLY PERSISTANT) and meet certain criteria (that being DAFNE course, carb counting, stable etc).

well im only new to this and have spent 2 months researching and thats the conclusion ive come to anyway :rolleyes:

Ciara GaGa

cocker5 wrote: »

As far as im aware the pump is available to all Type 1 diabetics in Ireland, you just have to be persistent (REALLY PERSISTANT) and meet certain criteria (that being DAFNE course, carb counting, stable etc).

Really?? I've only been Type 1 a couple of years and I've been offered the pump numerous times...without asking!! But yeah from what I've heard they are absolutely ideal for kids

Ciara GaGa wrote: »

Really?? I've only been Type 1 a couple of years and I've been offered the pump numerous times...without asking!! But yeah from what I've heard they are absolutely ideal for kids

In my experience (short experience) it depends on your consultant and the hospital you are attending etc... some consultants are more pro pump than others... some older consultants dont push it too much the youngers ones seem much more interested.

Not sure about being ideal for kids (only kids) but they are considered "best practise" in alot of other countries for the treatment of Type 1, and can massivley prevent complications later on in life. I was speaking with a consultant in the Mater Private today and he said by far the pump is the best treatment for Diabetes T1. Its my husband who has T1 and he will be going onto the pump asap.... he's already startng on a continous glucose monitor and he's only diagnosed 2 months now....

cocker5 wrote: »

.. he's already startng on a continous glucose monitor and he's only diagnosed 2 months now....

The CGM has been shown to be the more beneficial out of the two in terms of improved Glycaemic control.

CramCycle wrote: »

The CGM has been shown to be the more beneficial out of the two in terms of improved Glycaemic control.

Thats why we have invested in one... he has to wait for the pump (until one year etc) - but he's very active and finding managing his bloods difficult, just the constant finger pricking etc...

We did try and buy the evo CGM in Ireland but you cannot buy them direct only through your healthcare provider, and if we were waiting on the hospital to agree well he'd be 50.

So we've purchased the Dexcom unit, pricey as are the sensors but worth it of it gives him better control and confidence in his illness etc.

I have asked at my clinic about the pump and was told NO. The diabetes consultant did not agree with it. Anybody know if I can push for it even if the consultant says no?

Munstermissy wrote: »

I have asked at my clinic about the pump and was told NO. The diabetes consultant did not agree with it. Anybody know if I can push for it even if the consultant says no?

Can I ask what reason he gave ?
He can't just say no they are available to all with diabetes on the long term illness card... Older consultants can be reluctant to change.. Or new products!

What were his reasons?

Where are u based?

CathyMoran

My former doctor wanted me to keep unreasonably high blood sugars to get pump...will be going to another consultant. I have medical issues which make my diabetes brittle - he seemed to think that one size suited all :mad: Hoping to go to the lovely consultant that looked after me when I was pregnant.

CathyMoran wrote: »

My former doctor wanted me to keep unreasonably high blood sugars to get pump...will be going to another consultant. I have medical issues which make my diabetes brittle - he seemed to think that one size suited all :mad: Hoping to go to the lovely consultant that looked after me when I was pregnant.

Where are u based?

I have checked this out extensively and they cannot deny you the pump... It's available under LTI scheme.

They may have requirements ur diagnosed one year, dafne course completed and showing you can carb count very well etc but they should deny you the pump, I would def seek an alternative consultant!

For those of you who may consider going privately I was into matter private today and their prices are very reasonable, if anyone wants them let me know.

cocker5 wrote: »

Can I ask what reason he gave ?
He can't just say no they are available to all with diabetes on the long term illness card... Older consultants can be reluctant to change.. Or new products!

What were his reasons?

Where are u based?

Midwest clinic in Limerick. Never actually met the consultant in 8 years there, he believes it's an easy option and control should be better managed with pens, etc. I am due in next early February, must ask again. My HBA1C hovers around the 7 mark so dunno if that makes a difference, etc

Munstermissy wrote: »

Midwest clinic in Limerick. Never actually met the consultant in 8 years there, he believes it's an easy option and control should be better managed with pens, etc. I am due in next early February, must ask again. My HBA1C hovers around the 7 mark so dunno if that makes a difference, etc

U should do lots of research online, print it off and bring it in with you. In the us they start u on the pump straight away it's considered best practise.

It's consultants pig headdedness that is stopping people from getting the pump. It's outrageous really!

Long term use of the pump can massively reduce complications down the line like clogged arteries from all the insulin etc. They allow you to react to certain situations etc , whereas with the pens once then insulin is in it's in... Whereas u can adjust accordking with the pump.

If I were you is print off tons of stuff
Off the internet and bring it with you print off the long term illness docs which state the pumps we available etc.

I would persist and persist etc..

Tell them your very active , the pump can be life changing for people who are sporty with type 1 etc

If not I'd ask to see another consultant etc stand your ground

calfmuscle

cocker5 wrote: »

U should do lots of research online, print it off and bring it in with you. In the us they start u on the pump straight away it's considered best practise.

It's consultants pig headdedness that is stopping people from getting the pump. It's outrageous really!

Long term use of the pump can massively reduce complications down the line like clogged arteries from all the insulin etc. They allow you to react to certain situations etc , whereas with the pens once then insulin is in it's in... Whereas u can adjust accordking with the pump.

If I were you is print off tons of stuff
Off the internet and bring it with you print off the long term illness docs which state the pumps we available etc.

I would persist and persist etc..

Tell them your very active , the pump can be life changing for people who are sporty with type 1 etc

If not I'd ask to see another consultant etc stand your ground

The pump isnt all its cracked up to be. Most of the research is carried out by the manufacturers themselves. I had massive problems with the insertion mechanism of my pump and went back onto injections after 18 months. I have had diabetes for 17 years and had to be hospitalised twice in the 2 years purely because of the pumps poor design and unreliability. Plus it made no difference to my HbA1c.

calfmuscle wrote: »

The pump isnt all its cracked up to be. Most of the research is carried out by the manufacturers themselves. I had massive problems with the insertion mechanism of my pump and went back onto injections after 18 months. I have had diabetes for 17 years and had to be hospitalised twice in the 2 years purely because of the pumps poor design and unreliability. Plus it made no difference to my HbA1c.

I'm sorry you haven't had a positive experience but I've spoken to many many pump users and it's been life changing for them so until my husband decides otherwise we're gonna give it out best shot.

I'm sure it all depends on the pump used also. Brand make etc.. They are a few out there some far better than others so I'm sure it's all trial and error.

I've also researched a lot on CGM and the pump and while yes some research is done by manufactures there's a lot out there independent information also.

From what i can gather it's the longer term complications it's meant to reduce the risks massively.

Plus most people I have spoken to who are on the pump are active ie runners, people who ski etc and the pump literally given them their life back.. They never looked back - different strokes and all that!

At the end of the day if people want to try it as an option they should be allowed to not denied the pump due to not so proactive consultants etc!

I understand it's new technology and consultants can be reluctant to change!

What works for some doesn't work for others..

Dick Dastardly

CGM looks really worthwhile - I used it for 3 day periods a couple of times before through the Diabetes Center in Vincents and the volume of information it provides is great. Presumably it isn't covered here under LTI? Any ideas how much monitors and sensors cost?
Thanks.

Dick Dastardly wrote: »

CGM looks really worthwhile - I used it for 3 day periods a couple of times before through the Diabetes Center in Vincents and the volume of information it provides is great. Presumably it isn't covered here under LTI? Any ideas how much monitors and sensors cost?
Thanks.

As far as I gather the CGM isn't covered and they won't even consider one for people unless ur getting lots of hypos.. Or so Vincent's told us anyway!

We've just sourced the Dexcom unit, sensors last 7 days but according to many people on line they can last from 7-15 days plus. Some people say sensors can last 3 weeks!

Unit plus transmitter costs £975, sensors £250 for 4... So pricey enough but worth it for confidence and peace of mind ...

We tried to source the Medtronic Eco CGM which costs €3,375 but the won't sell directly it must go through the hospital and as far as I can gather they won't go with it unless your having hypos all the time etc. And even then they will only loan it out for a few days!

BTW

My husband is reading a book that is highly recommended called:

'Think like a pancreas '

by Gary scheiner

He's finding it excellent!! Really worth a read for anyone with type 1 !!

cocker5 wrote: »

For those of you who may consider going privately I was into matter private today and their prices are very reasonable, if anyone wants them let me know.

I would love to get prices, I haev been going for one from my clinic for awhile now with the parameters changing constantly. I have another appointment at the end of the month but if it still looks doubtful, I may go Private.

cocker5 wrote: »

U should do lots of research online, print it off and bring it in with you. In the us they start u on the pump straight away it's considered best practise.

I think the German method is slightly better in that you have to know how to give injections (and as far as any of the Diabetic cyclists in my club tell me, you have to carry an emergency injection around constantly as DKA hits faster without the basal in the background. They insist on 6 months ( I think) of injections before you are moved to the pump so you are used to thehm and can prove you are able to administer them safely.

calfmuscle wrote: »

The pump isnt all its cracked up to be. Most of the research is carried out by the manufacturers themselves. I had massive problems with the insertion mechanism of my pump and went back onto injections after 18 months. I have had diabetes for 17 years and had to be hospitalised twice in the 2 years purely because of the pumps poor design and unreliability. Plus it made no difference to my HbA1c.

A neighbour of mine had issues as well and now has two pits in his abdomen, I just think that in the majority of cases it seems to work better than injections, it won't work for everyone but it seems to work for a majority.

CramCycle wrote: »

I would love to get prices, I haev been going for one from my clinic for awhile now with the parameters changing constantly. I have another appointment at the end of the month but if it still looks doubtful, I may go Private.

I think the German method is slightly better in that you have to know how to give injections (and as far as any of the Diabetic cyclists in my club tell me, you have to carry an emergency injection around constantly as DKA hits faster without the basal in the background. They insist on 6 months ( I think) of injections before you are moved to the pump so you are used to thehm and can prove you are able to administer them safely.

A neighbour of mine had issues as well and now has two pits in his abdomen, I just think that in the majority of cases it seems to work better than injections, it won't work for everyone but it seems to work for a majority.

Here its recommended your diagnosed one year, so like in Germany you must be completely happy with the injections and carb counting before you can go onto the pump etc.

I was talking to the Mater Private yesterday and heres the information they gave me:

Firstly they have 3/4 consultants
2 Diabetics Nurses
Dietican

Prices are as follows:

First consultation: €200

€400 all in price for the pump (which is excellent seen as it is €4,000 to buy privately), this includes a carb counting sessions / training. Pump training etc. this is applied through your LTI card via HSE lead time is 4-6 weeks. All comsunbales are covered under LTI card which again is great as each sensor lasts 7 days and costs €60.

Your yearly tests for eye care, bloods etc are also covered under the LTI Card.

One / possibly twice per year you wil visit your consultant at a cost of €160 per appointment.

She did stress most patients only come once per year as they have a hotline opened 5 days a week and through this most questions can be answered.

Remember you can claim 20% back via your MED1 Form via the reveune and claim some back if you have VHI.

Their number is 01 885 8100

My husband attends Vincents and has been told many different stories... Fisrtly we were told once he's stable, done the DAFNE course he can get the pump, no delay. Next time we were told after all that thereS A 10/12 months delay... so like you the parameters keep changing. But i will persist... and i can be very persistant when i want to be....

And i spoke with a rep from a pump supplier last week, he told me Vincents purchased 60 pumps in 2012, they only gave 10 out, so they have 50 pumps sitting on their shelves etc!! so typical public sector im afraid.

as a result we too will more than likely attend the Mater Private Clinic

Hope this helps.

cocker5 wrote: »

First consultation: €200

€400 all in price for the pump (which is excellent seen as it is €4,000 to buy privately), this includes a carb counting sessions / training. Pump training etc. this is applied through your LTI card via HSE lead time is 4-6 weeks. All comsunbales are covered under LTI card which again is great as each sensor lasts 7 days and costs €60.

One / possibly twice per year you wil visit your consultant at a cost of €160 per appointment.

And the obvious question, can I still attend my public appointments. I have VHI through work but I can't afford private on a continuous basis, moral opinions aside, could I get the pump, pay the price and then never go back, ie just keep attending my public appointments? Or would it be flagged and the public service pulled from under me?

http://www.accu-chekinsulinpumps.com/documents/PumpUserGuide.pdf

.

CramCycle wrote: »

And the obvious question, can I still attend my public appointments. I have VHI through work but I can't afford private on a continuous basis, moral opinions aside, could I get the pump, pay the price and then never go back, ie just keep attending my public appointments? Or would it be flagged and the public service pulled from under me?

Do you mind if i ask what VHI plan you have? I have compnay plan plus level 1, again through work (includes my husband too) and we can claim back €60 on every consultants appointment for a max of 7 per year each. so in effect they would only cost you €100 IYKWIM - just an option that may help.

I also asked this too yesterday and was told once you get the pump etc and your happy, then just organise your appoinments via the public road again, get your file send over from the Mater to your hospital and they have to treat you. Just say you had the money and now you cannot afford it, once you have the pump you wont care... if your public they have to treat you they cannot pull these services. my husband is looking at doing the same... he cuurently has a CGM he bought privately and Vincents still treating him

But you will have to pay the inital fee of €200 plus the €400.... the possibly one follow up fee of €160... so in and around €760, but remember you can claim 20% back vie your med1 form, its not a massive amount but every little helps!

hope this helps

gctest50

CramCycle wrote: »

........... could I get the pump, pay the price and then never go back,..........

Pumps don't last forever - some time-out for safety reasons and "ask" to be sent back to the factory for servicing afaik
- seems they just put them in the skip and sent a new one back to you

See the very end of page 158 here :

Errors :

A5 : Pump Timer

E5 : End of operation

gctest50 wrote: »

Pumps don't last forever - one or two timed-out and "asked" to be sent back to the factory for servicing afaik
- seems they just put them in the skip and sent a new one back to you

Yes but the pumps are available on the LTI illness scheme, so the poster could get the pump via Mater, then eventually go back to his original hospital for treatment, if his / her pump breaks down they will apply for another one via their hospital under the LTI card.

From what i gather once you have the pump and actively using it they will replace when needed.

Also useful to have your pump or CGM added to your house contents insurance in case of damage or it gets lost etc

graflynn

Munstermissy wrote: »

Midwest clinic in Limerick. Never actually met the consultant in 8 years there, he believes it's an easy option and control should be better managed with pens, etc. I am due in next early February, must ask again. My HBA1C hovers around the 7 mark so dunno if that makes a difference, etc

Hi Munstermissy, I'm based in the MidWest too and Limerick do not have an Insulin Pump programme in place for adults. They were just about to get the Under-5's pump programme under way last year and the ped's consultant went out on leave.

If your clinic doesn't have an Insulin Pump programme then even if the consultant wanted to give you a pump the hospital doesn't have the specialist staff that would train you.

I got my pump by going to a consultant privately.

PS I attend a Type 1 Support group in Clare and we have lots of people attending who attend limerick and a lot who attend Galway. The meetings are always very interesting

graflynn wrote: »

Hi Munstermissy, I'm based in the MidWest too and Limerick do not have an Insulin Pump programme in place for adults. They were just about to get the Under-5's pump programme under way last year and the ped's consultant went out on leave.

If your clinic doesn't have an Insulin Pump programme then even if the consultant wanted to give you a pump the hospital doesn't have the specialist staff that would train you.

I got my pump by going to a consultant privately.

PS I attend a Type 1 Support group in Clare and we have lots of people attending who attend limerick and a lot who attend Galway. The meetings are always very interesting

Thanks Gra, do you think the pump is worth it? Would you have a ballpark cost for this privately?? PM me details of your next meeting and I will try and attend. To be honest I'm a half glass full gal so if it is meetings where people are feeling sorry for themselves, it wouldn't be for me, lol...

graflynn

Munstermissy wrote: »

Thanks Gra, do you think the pump is worth it? Would you have a ballpark cost for this privately?? PM me details of your next meeting and I will try and attend. To be honest I'm a half glass full gal so if it is meetings where people are feeling sorry for themselves, it wouldn't be for me, lol...

Hi Munstermissy, my pump cost me the price of the consultant visits and I got most of that money back from VHI. The pump and supplies were covered under the LTI scheme, so I didn't have any cost there. I already had the carb counting training from living in the US, so I didn't need to find a diabetes dietitian. The pump rep visited me at my house for training and I went into my consultants rooms for the start up. So I only paid for my regular consultant visits.

Regarding our diabetes support group meetings; I'm certainly not a person who feels sorry for myself so I hope that I'm a good representative of the type of people who attend. We mostly share new information on diabetes research and what's available in Ireland, we share our own experiences on overcoming the challenges in living with diabetes. I think we mostly believe that knowledge is power and that learning as much about diabetes as possible means that it will never hold you back.

Our next meeting is on Tuesday Feb 11th in the Temple Gate Hotel, Ennis. We have an email that people can contact us on too; clarebranchdfi@gmail.com I understand that some people can be very nervous about show up at a group meeting where they don't know anyone, so we always welcome +1's for support.

I have met so many people in this group from all walks of life and some have become good friends. We are from all age groups (over 18). I always leave the meetings feeling positive.