Private Purchase of an insulin punp

[cmcilwraith]

Hi,

We live in the Borders of Scotland where there is currently no funding for an insulin pump for my 12 year old son but agree that he should have one.

We were going to purchase one privately but because Animas will only provide one, if the diabetes care team agree to look after the initial setup of the pump, which they are not prepared to do.

So, we are looking around to see what the alternative is. It was mentioned on this website that we can purchase pumps privately. Can anyone tell me who and how this can be done?

Choice of pump would be a luxury but more important is that he gets one.

Thanks,

Connal

 

[jopar]

Yes you can but they are prescription only item and needs to be agreed by a medical professional, i.e your consultant... Hence medtronics reply..

Give the other pump companies a phone but bare in mind that they may well say the same medtronic, but it is very much worth a try...

Is it possible to travel to another hospital/clinic where you might get a more pump friendly consultant?

I would contact INPUT input.me.uk they will be your best source of help, they can advise on pump friendly consultants, different pumps/companies, help if you need to fight for your pump privately or funded... They are very good indeed check them out

Good luck, don't give up, you may have to battle but it is well worth the fight..

 

[Vikki2]

Aah I really feel for you and know exactly how you feel. We live in the Lothians. In February this year we were told that our 5 year old daughter would have to wait at least 3 years for a pump. We were in a desperate state. Things weren't going at all well with her diabetes control and even our consultant said she needed a pump. So... after a massive battle with a front page Scotland on Sunday article, support from our MSP, support from IPAG (the Scottish equivalent to INPUT), and just not giving up... she got her pump last month! Not only that but instead of putting 2 children a year on the pump they are now putting 3 a month on the pump in the Lothians! We looked into paying for it ourselves but it's expensive – you need to take into account the ongoing monthly bills aswell as the pump itself, it really adds up. And anyway I thought 'why should we'. Our daughter has the DANA pump through Advanced Therapeutics. They provide the training (the trainer is a DSN and uses the pump himself) and they provide 2 weeks of 24hour help. We 'checked in' with the trainer every day for 2 weeks and then called at any time of the day if we were having difficulties. Even though you shouldn't have to pay for it yourself, Advanced Therapeutics might be your best option if you really have to go down that route. Anyway, I could go on and on....
I'll PM you and let's talk.
Don't give up. It has all been worth it for us.
X

 

[cmcilwraith]

Hi,

thanks for the encouragement.

Funnily enough, I was speaking to Advanced Therapeutics only 10 minutes ago. They sound very sympathetic and helpful and gave me some contacts in Edinburgh to chase up.

I had heard about the turn-around in Lothian and am very envious! We have contacted our MPs, who are certainly trying to help but nothing has come of it so far (though our case has been mentioned in the Scottish Parliament).

I think my wife has contacted IPAG to let them know the situation but I'll have to check that.

I feel that the next step is to let the newspapers know. Anyone any ideas how to go about that and which are the best papers to contact?

Thanks again,

Connal

 

[cmcilwraith]

Me again,

I should have also said that I have also contacted INPUT for their thoughts (though I think they are more England oriented). Keep the suggestions coming, though!

 

[Alba37]

Hi Connal

Sorry to read about the problems you are experiencing getting a pump for your son. I am surprised to read that there is no funding in the Borders as the recently published Diabetes Action Plan doesn't give that impression at all!!

I would be asking questions (to the Health Board and Government) as it says for 2010-2011:

The Borders Diabetes Service has run its own pump therapy service since 2005. Pumps have been offered to more patients than have taken up pumps. The people who have declined the use of pumps have done so for individual and personal reasons.

The pump service will become an integrated service incorporating adult and paediatric pump services.

Currently 23 patients (19 adults and 4 children) in total on insulin pump therapy (3.8%)
Proposals for future investment will be considered within the standard Local Delivery Planning process The proposed additional investment would support an additional 10 adults and 4 children, bringing the total number of people on pump therapy to 37 (6.1%) in the first year, with year-on-year increase of 1 adult per year.

http://www.scotland.gov.uk/Publications ... 7095311/10

I am in iPAG and would be interested in hearing how you get on,

Aileen

 

[Hobs]

I would definately recommend keeping your MP involved. It was not diabetes related and in England, but my wife was having all sorts of problems with our main general hospital (lack of cooperation etc) so our MP wrote internally directly to Simon Burns MP, Minister of State within the Department of Health. Within the following week all the issues had been resolved to her satisfaction and now there is to be a full investigation.

 

[Alanem]

When I read posts like this it puts everything into perspective and I realise what brilliant work this forum does. It should be NHS funded never mind about the paintings and statues.
Alan