Remote monitoring for children.

[cherrypie]

If only there was enough money for pumps for every child and one of these for all the parents.

http://www.diabeteshealth.com/read/2012/01/09/7410/fda-approves-medtronics-remote-diabetes-monitor/

 

[Adrienne]

Ohhhh Cherrypie if only you knew........

Children with diabetes have a huge conference annually and at the first one in 2009 Metronic UK brought the prototype of this machine, the My Sentry with them. We were all so excited. It is awesome.

For all kids using sensors we have to use a baby monitor so we can hear the alarms. Well you can imagine for a young girl like my nearly 12 year old she doesn't want me to have a baby monitor.

What My sentry does is that in my daughter's bedroom would be the 'outpost' and I would have the My Sentry in my room. The transmitter which is attached to the sensor and transmits everything to the pump would also transmit to the Outpost. The outpost then transmits to My sentry. So I would be able to see and hear everything there is on the pump taking away the need for a baby monitor. It would be lifechanging.

So in 2010 Medtronic decided they wouldn't come to the conference (FFL Friends for Life) so I gathered signatures and wrote to them a long heart felt letter about why they needed to be at FFL and added signatures. They changed their mind and came.

However we then heard My Sentry was shelved. You can imagine our horror at that.

So when we got back in NOvember 2010 I wrote once more the Medtronic about why we needed the My Sentry more than anything else at this point in time. It found the right people and suddenly Medtronic were interested in me. Along with a few others on this forum off I was whisked to Switzerland head office to sit on a bloggers forum (not that I blog). There were about 20 of us from over Europe, (UK and Germany and Spain). However the icing on the cake was that the MD of Europe wanted to meet me and chat about My Sentry. We have met another once since then and I have good contacts now in Medtronic and help with what I can do as a mum.

Fast forward a year. The one brought out in the USA is a first version. It is compatible with the Medtronic Revel which is not in the UK. I have been told that there are no plans to bring it out in the UK arghhhhhhhhhh.

I am compiling another letter to send to Medtronic saying why we absolutely need it in Europe (well in my house actually) but I'll start with Europe. I am collecting signatures.

I want adults and kids.

If anyone would like to add their name to my list it would be really appreciated, adults and children alike.

Bet you didn't think you were going to get that sort of rather long rambling response 🙂

 

[trophywench]

I'd certainly 'sign' your 'petition' for that Adrienne.

What info do you need, presumably full name and address, anything else?

Please say what you need, and anyone who wants to support this can PM you their personal info.

 

[cherrypie]

Really interested in your reply.

With a bit of luck, you will get more signatures from people reading this thread.

I have the greatest of respect for all parents of children with Type1 diabetes. They do an amazing job, they are the unsung heroes of diabetes management.

 

[rachelha]

Let me sign too!

I have the greatest of respect for all parents of children with Type1 diabetes. They do an amazing job, they are the unsung heroes of diabetes management.

I competely agree, you have my compete admiration.

 

[Northerner]

I'll certainly sign it Adrienne. Do you have an online petition at all?

 

[Adrienne]

No online petition, not needed. I have great contacts now at Medtronic and we listen to each other so all good.

Please can anyone who wants to sign email me on ??????

Just need your name and area maybe.

Thank you very very much 🙂

I'll create a new one for you x

 

[Northerner]

Are you sure you want to publicise that email address Adrienne? Might be better to set up a gmail address for the purpose so you don't get crank emails.

 

[Adrienne]

Are you sure you want to publicise that email address Adrienne? Might be better to set up a gmail address for the purpose so you don't get crank emails.

Well it is all over the place, I think anyone can find my email address but I'll create another. Thanks 🙂

 

[Adrienne]

Here we go, send emails to pumping@atburton.plus.com

That will be fine.

Thanks all 🙂

 

[Pumper_Sue]

Fast forward a year. The one brought out in the USA is a first version. It is compatible with the Medtronic Revel which is not in the UK. I have been told that there are no plans to bring it out in the UK arghhhhhhhhhh.

There lies the problem it's called money 🙂 Medtronic have weighed up the costs involved to get the CE markings and decided no way, as the sentry would not be available on the NHS and at that price how many parents in this day and age can afford that type of money? Americans have ins if the companies will fund it for them.

It's a great idea though and would put a lot of parents minds at rest.

 

[Adrienne]

I see where you are coming from but I think you under estimate the need by parents for this. I would find the money. I would rather have this than any holiday or anything.

 

[MeanMom]

I've sent you a email Adrienne so please add me 🙂

Although we are not pumping personally would find this sort of thing linked to a CGM during the night would mean a good nights sleep for the first time since Dx. I know of several parents (myself included) who frequently spend part or all of the night 'camped' in their Childs room. We ended up buying K a double bed partly 'cos I'm getting a bit old to sleep in a bunk bed!

What would $3000 come to in pounds these days? Spose over ?2000. Think many would pay it - do a fundraiser or something.

Thanks for original link cherrypie 🙂

 

[Pumper_Sue]

I've sent you a email Adrienne so please add me 🙂

Although we are not pumping personally would find this sort of thing linked to a CGM during the night would mean a good nights sleep for the first time since Dx. I know of several parents (myself included) who frequently spend part or all of the night 'camped' in their Childs room. We ended up buying K a double bed partly 'cos I'm getting a bit old to sleep in a bunk bed!

What would $3000 come to in pounds these days? Spose over ?2000. Think many would pay it - do a fundraiser or something.

Thanks for original link cherrypie 🙂

Trouble is MM, it will work out to an outlay of the cost of the monitor and then the cost of the sensors you also need to be on the medtronic pump to use it. Very few people have the benefit of CGM on the NHS let alone a pump.

 

[Northerner]

Trouble is MM, it will work out to an outlay of the cost of the monitor and then the cost of the sensors you also need to be on the medtronic pump to use it. Very few people have the benefit of CGM on the NHS let alone a pump.

True, but surely the point is that this is something being pushed for by parents who would also be using or contemplating sensors? And I can't imagine that, if the technology is already proven in the US, it would be that difficult to adapt and prove for Europe.

 

[Adrienne]

Trouble is MM, it will work out to an outlay of the cost of the monitor and then the cost of the sensors you also need to be on the medtronic pump to use it. Very few people have the benefit of CGM on the NHS let alone a pump.

There are many children on sensors on a Medtronic pump, more than you would imagine. It is those parents who want this device. There are many more parents on top of that who are in the process or thinking about a pump and thinking about Medtronic due to the integrated sensors and the low suspend so that means even more. Many (most) get sensors funded for children, there are a few that pay privately of course, but many get funding for 1 or 2 a month or full time funding.

True, but surely the point is that this is something being pushed for by parents who would also be using or contemplating sensors? And I can't imagine that, if the technology is already proven in the US, it would be that difficult to adapt and prove for Europe.

Absolutely Northerner. The technology would not be that hard to convert. There is always lots going on behind the scenes with Medtronic and we never know what they are going to do next. The My Sentry is being used and tested by parents in the USA. I have a long list of parents who would like to trial this for Medtronic in the UK and that would help with the licensing. This piece of kit would not be funded and good luck to the person who manages to get it funded by the NHS. It is expensive but us parents who use sensors absolutely want this and would by hook or by crook fund it.

PS first time I have actually managed to quote two messages at the same time. Marvellous 🙂

 

[Adrienne]

I've sent you a email Adrienne so please add me 🙂

Thank you x

 

[imtrying]

Just sent you an email as well Adrienne, so hopefully you get it!

 

[Adrienne]

See, I really need a 'like' button. I really like Katie's post but I'm supposed to be working and I keep coming on here and type and as someone pointed out in another thread altogether why say something with one word when 200 will do

 

[imtrying]

See, I really need a 'like' button. I really like Katie's post but I'm supposed to be working and I keep coming on here and type and as someone pointed out in another thread altogether why say something with one word when 200 will do

hahahaha love it!!

sorry..... *like* 🙂