Disappointed yet again!

[EllieLou]

Ive been told by professionals that the pump would be benefical for me and I really want to try it out but my hospital have said that its too expensive so right now they cant consider it an option! I feel like I have no support from them, is there really a price on my health?

 

[jack412]

can you put it back to the professional to fight your case with the hospital? change hospital?

if you feel like a chat and they may have an idea
http://www.diabetes.org.uk/Guide-to-diabetes/Teens/Help-and-support/We-can-help/Careline/
http://www.diabetes.org.uk/careline

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if you feel like a read this might help your BG in the meantime as a refresher
most recommend you start with, miss a meal Basal testing http://www.diabetes-support.org.uk/info/?page_id=120

There is an online course for background and an idea to it. Free to register http://www.bdec-e-learning.com/

This set of workbooks are worth reading and practising working examples of carbs and doses and corrections
Don't change dose without nurse approval
Workbook 1 http://www.diabetesinscotland.org.uk/Publications/9225 Carbohydrate Counting.pdf
Workbook 2 http://www.diabetesinscotland.org.uk/Publications/9226 Carbohydrate Counting the Next Steps.pdf

Carb list http://www.diabetesinscotland.org.uk/Publications/9227 Carbohydrate Tables A6.pdf

Diary http://www.diabetesinscotland.org.uk/Publications/9228 Free Diary Portrait A4.pdf

Sick day rules http://www.diabetes-healthnet.ac.uk...flet_-_Sick_Day_Rules_for_Type_1_-_Nov_13.pdf
Sick day rules flowchart http://www.leicestershirediabetes.org.uk/uploads//documents/Type1 Sick_day_rules_InsulinV3.pdf


A workbook with USA numbers and math rules, but it has a good trouble shoot at the end
http://www.bd.com/us/diabetes/download/insulin_adjustment_workbook_complete.pdf

 

[donnellysdogs]

Ive been told by professionals that the pump would be benefical for me and I really want to try it out but my hospital have said that its too expensive so right now they cant consider it an option! I feel like I have no support from them, is there really a price on my health?

You need to get hold of INPUT. @iHs knows more details of folk that can help in your case. You cannot be denied one if your health would benefit

 

[EllieLou]

Thanks Jack412 I will take a lot

Donnellysdogs whats this input thing? How do I contact them? Thanks

 

[donnellysdogs]

www.inputdiabetes.org.uk/

 

[donnellysdogs]

They can help

 

[Engineer88]

@EllieLou Lots of us have had to fight for pumps, Your not alone.

What have they cited as the reason for refusal? just price?

 

[EllieLou]

Thanks donnellysdogs

Engineer88 the price is all that they have said is the problem, which is why im so mad.

 

[donnellysdogs]

Worthwhile speaking to somebody from INPUT. I didn't have to fight, but know of others that have and the help and advice has helped them enormously.

 

[noblehead]

Such a shame that the cost has been a deciding factor, the INPUT route that DD has suggested sounds like your next step.

 

[Minnie45]

I went for years trying to get a pump, I met the NICE criteria and my DN agreed but the consultant was very anti pump and put so many obstacles in my way, including a 4 week (!) carb counting course. I ended up changing to a pro pump hospital, 3 months after my first appointment I had confirmation my funding had been approved and 2 months after that I had my pump.

It makes me so cross when I hear of others having issues accessing the pump.

 

[CarbsRok]

Such a shame that the cost has been a deciding factor, the INPUT route that DD has suggested sounds like your next step.

Costs are not allowed to be a factor.

 

[noblehead]

Costs are not allowed to be a factor.

Good to hear CarbsRok

 

[Spiker]

Ive been told by professionals that the pump would be benefical for me and I really want to try it out but my hospital have said that its too expensive so right now they cant consider it an option! I feel like I have no support from them, is there really a price on my health?

Yes, there is a price on everyone's health, and budgets are tight, so like everyone you must make your case.
You will have an easier time if you meet the NICE criteria, either

- a young person
- high Hba1c despite being trained on MDI
- problems with hypo awareness (?)

But INPUT will fight your corner regardless of whether you meet these criteria or not. Give Lesley a call.

 

[ConradJ]

Thanks donnellysdogs

Engineer88 the price is all that they have said is the problem, which is why im so mad.

Hi @EllieLou ,

Firstly, you need that response in writing.

Secondly, write to those "professionals" asking them to clarify why the pump would be in your benefit - e,g, is your HbA1c too high, or are your suffering regular night-time lows that can't be evened out with different insulins and which a pump would resolve?

Thirdly, go back to the nay-sayers with the following questions:
1) What is the current cost of photocoagulation in the trust?
2) What is the current cost of kidney dialysis in the trust?
3) What is the current cost of an A&E trip / overnight stay in the trust?

Once you have that written evidence, go see your GP (with a copy of it all for his/her records) and ask for their support for this: GP's are the budget holders for your health and therefore have significant clout with how the NHS budget is spent in your area.

Come back if you have problems.

Good luck and best wishes.

Conrad

P.s. As per @donnellysdogs, see Input for advice and links to various bits of statutory (i.e. NICE) guidance on pumps.

 

[EllieLou]

Hey, just a quick update!
I have gone to my gp and they decided to refer me to a more pump friendly hospital, I have an apppointment on the 12th of January! Finally feeling hopeful!

 

[ConradJ]

That's fantastic news @EllieLou ... while you're thinking about your reasons for needing a pump, draw up another list for getting a CGM funded as well - for the first at least - it will do wonders for starting you off on a new balanced playing field (like normalised night-time BGs).

 

[EllieLou]

Whats a CGM?

 

[ConradJ]

Continuous Glucose Monitor - it comprises a sensor (which is implant under the skin, like the catheter in a pump) and a receiver.

Some pumps - like the Animas Vibe - will receive the CGM signals directly, the Medtronic Paradigm Veo has its own system, others just work as standalones.

The benefit of a CGM is that it measures your glucose levels (via the interstitial tissue) every 5 minutes, thereby allowing you and the Health Care team to see what's happening to your blood sugars in between your usual blood tests. This data can help everyone make better decisions about your basal rates, etc.

See this link:
http://www.diabetes.co.uk/cgm/continuous-glucose-monitoring.html

 

[EllieLou]

Ahh great thanks, been struggling a bit recently and something like that would really help so will look in to it