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Can't get an Insulin Pump.......

A

alaric

Member
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15
Hey all, I need some help. I'm having an absolute mare with my control, name it & I have tried it out. My diabetic nurse & diabetic consultant advised me 6 months that I go onto a Pump. Today I went to see them again to clarify all the details and finalise a few bits but was told, " Pump?, no, we can't afford those I'm afraid, sorry, we know we said you could have 1 but now it's a no go". My BM's fly up & down all day, I'm really struggling, the Pump could be the key to my nearly 6 years of struggle with this thing. I live in South Wales ( where it appears the local NHS is skint! ) & have the good fortune of working for a company that has a works doctor that told me if I could give her the costing of one of these things she may be able to get funding, things ARE getting desperate!!. So, how much do these bloody things cost?.
 
Hi

To get the exact cost involved for pump therapy you need to contact INPUT (google Input Me). They will be able to tell you everything you need to know on how to go about getting yourself on a pump.
In general they are around £3000 to buy and about £1000 per year for consumables like infusion sets and reservoirs.

Although you say that your bg levels are up and down, have you found out about adjusting your bolus insulin to a carb ratio. Also, one of the very best ways to improve control is to test your bg levels 6 times a day - Breakfast, mid morning, lunch, mid afternoon, dinner, bedtime. By doing so you can adjust your insulin for the carb that you eat so that your bg remain within healthy targets.
 
Hi there, yeah, I'm testing my BM's 6-10 times a day!, I'm now taking 1 1/2 units of NovoRapid per 10 grams of carbs. I take one big jab in the morning, 60 units of Levermir (long acting) and then take 'X' amount of Novorapid (shortacting) before every meal depending on my BM. It's a constant battle!. My practice nurse, GP, diabetic nurse & diabetic consultant all agree that I need a pump & that I am a very good candidate, I can't argue with 4 exact points of view, however I can't have one from the NHS. Hence the Question!, lol!. Thanks for the google tip, I'm about to look @ that now. Cheers mate, much appreciated!
 
Hi Alaric

Where abouts are you in South Wales?

I live in South Wales, and my DSN has stacks of Pumps sat in her office waiting for 1 person a week to go on them. Every Monday morning they have a new patient go on....I didn't even see a consultant before I got mine.

My Hospital and PCT is within Carmarthenshire....
 
Its awful the postcode lottery. My 2 year old should have been starting on a pump next week but our local NHS bunch haven't decided yet if we can have funding and they've had months to make the decision.
 
If you fit NICE guidelines for a pump, then the following applies:

Primary Care Trusts are obliged by law to provide funding for however many insulin pumps are needed. They are not allowed to cap the number of pumps they fund. They may have set a number so that they can plan a budget but that number is not a cap. Your consultant may have misunderstood, or the PCT may be putting pressure on the consultant not to prescribe too many pumps. If your consultant has misunderstood, you can advise him or ask him to contact INPUT. If it is the latter, INPUT needs to know about it so that we can challenge the PCT and make them aware of their legal obligation.
Click to expand...

So don't let them get away with saying yes you need one, you can have one and then turning round and saying we can't afford one now. They can't do that if you fit the guidelines.
 
Wow, I'm amazed!. I honestly thought that these things were so expensive that it was prohibitive. I have chased another option for funding on this, as I am an ex serviceman, the British Legion could help however I'm loathe to do this as there are a lot more ex-sercimen who need the help more than I do. But in view of the very useful info you have all given me, I'm going to start asking questions of some people. My consultant told me that he is only allowed to give 2 of these a year to the most deserving cases!!!, I can't believe that their is a nurse with a pile sat in her office after all that I have been told, it's unbelievable!!!!. I live in the county of Neath Port Talbot so it does appear that it is a local NHS thing, still, it seems that their is hope for me yet, I think!.
 
Hi

It does take some time to learn to figure out your correct carb ratios. Do you adjust them at different times of the day or do you just use the same ratio for all your meals?

Rather than push for a pump, I think it would probably be more helpful for you to book an appt with your DSN and take with you your bg monitoring book so that she will be able to see what your bg levels are doing throughout the day along with the amounts of carb that you eat at each meal time. Many people do find themselves having to adjust ratios as the basal insulin doesn't always keep bg levels steady all day.
 
Google INPUT and contact John Davis, they will be able to help you they are very good when it comes to things like this... Please contact them..
 
I'm going to look up INPUT straight away. As for the carb thing, my diet is good & healthy however, thats not the answer is it!. I've identified that this is the area that I need to work on & thats where my struggle is, trying to suss out the amount of Insulin per amount of carbs ( perhaps a carb free diet is the answer!!! ). I am now in the queue to see the Dietetic specialist so am looking forward to getting some good nutritional info. I'll be completely honest, I'm not 100% sure on a pump, I don't expect it to be the answer to the problem & I am unsure of having something attatched to me all day. So with that that in mind, INPUT here I come!!.........
 
Alaric

To work out ratio's...

Two methods..

Dish your normal meal, weight and calculated the carb content, then take your usual amount of insulin and monitor what happens, by 2 hours you should be just above your starting point, as at this point 80% of your quick insulin has been used, but the remaining 20% will drop your bg slightly over the next 2 or 3 hours, depending on the the duration of your insulin..

or

You could weight 10g of carbs, then inject the insulin you think should cover this, and as above monitor to see what is happening

If your BG rises to much you need more insulin, if it drops to much you need less insulin...

Two good books worth getting one of these..

Think Like A Pancreas by Gary Scindler (sp)

Using Insulin by John Walsh..

Here's a couple of links you might find helpful

For DAFNE


http://www.dafne.uk.com/

http://www.dafneonline.co.uk/

And Bournmouth hospital diabetic department has a on line carb counting learning course found here

http://www.bdec-e-learning.com/welcome. ... -839850473
 
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