Addison's

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fredt

Member
Messages
10
Type of diabetes
Don't have diabetes
hi, i'm new here so i don't know what i'm doing!
my daughter has Addison's disease. She has been in hospital 3 times this month already.
How do i get a pump?
Any help would be useful.
i understand from my GP that hydrocortisol pumps are not funded by the NHS - but i need to buy one!
Nr King's Lynn UK
 
Liam1955

Liam1955

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Hello @fredt and Welcome to the Forum :).
 
F

fredt

Member
Messages
10
Type of diabetes
Don't have diabetes
Azure: Sorry i didn't use your name. Just found it and i'm new here and haven't learned how to use the replies yet!
 
azure

azure

Expert
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9,780
Type of diabetes
Type 1
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Pump
fredt said:
No she doesn't have diabetes. Want to use as an adrenal pump.
Click to expand...

Then I imagine you'd have to buy one. I'm not sure whether the pump companies would sell you one for use for that. Also, you'd need an expert to set up the correct doses of medication. I'm not sure how the amounts would coincide with the insulin units for which the pumps are set up.

Did the specialist suggest that that would be a possibility? You buying a pump and them setting it up?

Have you tried an Addisons forum to see if any other people are using this method in the UK?

Pumps aren't cheap and then there's an ongoing cost with the cannulas and tubing too, so a bit of an outlay.
 
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F

fredt

Member
Messages
10
Type of diabetes
Don't have diabetes
azure said:
Then I imagine you'd have to buy one. I'm not sure whether the pump companies would sell you one for use for that. Also, you'd need an expert to set up the correct doses of medication. I'm not sure how the amounts would coincide with the insulin units for which the pumps are set up.

Did the specialist suggest that that would be a possibility? You buying a pump and them setting it up?

Have you tried an Addisons forum to see if any other people are using this method in the UK?

Pumps aren't cheap and then there's an ongoing cost with the cannulas and tubing too, so a bit of an outlay.
Click to expand...
 
F

fredt

Member
Messages
10
Type of diabetes
Don't have diabetes
fredt said:
No she doesn't have diabetes. Want to use as an adrenal pump.
Click to expand...
Azure: Lost your last post! Read it first, then lost it! From memory: I'm aware it will cost: my GP will help set it up. I realise there may be 3 months or so before we get it balanced. Yes. in the USA they have insulin pumps which are use for hydrocortisone and the insurance pays for them. Not here though! It seems you can get a sex change on the NHS for free, but not life saving pumps! go figure!
 
azure

azure

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9,780
Type of diabetes
Type 1
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fredt said:
Azure: Lost your last post! Read it first, then lost it! From memory: I'm aware it will cost: my GP will help set it up. I realise there may be 3 months or so before we get it balanced. Yes. in the USA they have insulin pumps which are use for hydrocortisone and the insurance pays for them. Not here though! It seems you can get a sex change on the NHS for free, but not life saving pumps! go figure!
Click to expand...

Then perhaps you should check whether the pump companies will be happy to sell you a pump to use as an adrenal pump? You might need a consultants letter or to provide further information before they're happy to do so.

I've read a little about adrenal pumps and it does sound an excellent idea.
 
F

fredt

Member
Messages
10
Type of diabetes
Don't have diabetes
hi Azure. found the post now:
Both the GP and the specialist at the hospital said it was a good idea but they could not give me any further info? So there is an Addison's site in the uk? What's the url please?
 
azure

azure

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Messages
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Type of diabetes
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I don't know how good it is, but here's one :)


http://www.addisons.org.uk/forum/

Pump companies in the UK are Animas, Medtronic and AccuChek to start you off. You could contact them and ask about a private purchase.

I hope you get this sorted for you daughter and that it improves her life :)
 
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