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Open Letter to NICE

payam7777777

Member
Messages
19
Type of diabetes
Family member
Treatment type
Pump
I'm entranced. From what I understand, pumps are funded by the NHS recommended by NICE if:
  • you're having frequent hypos or hypers without warning
  • your HbA1c is 69mmol/mol or above even though you have tried to manage your blood glucose level
this is analogus to saying: (the geniuses at NICE might as well have expressed the criteria like this)
  • If you are maintaining good control with good A1C, good TIR, then evidently you dont deserve better technology.
  • Sizable mismanagement, will invariably get you a pump/cgms.
  • Successful diligent efforts to have good blood sugars is inconsequential and means nothing to us.
that's real nice!

NICE criteria:

Type 1 diabetes – Insulin pumps

Read about insulin pumps, which are used to reduce hypoglycaemia (hypos) and improve blood glucose levels.
www.nhs.uk
 
That is certainly one way of interpreting the guidelines.
The other way is that the funding is very limited and those who are able to get most benefit from the extra expense are prioritised.

I would definitely not interpret a challenge managing our diabetes with MDI as "sizeable mismanagement". There are many reasons why some find MDI difficult both physical and mental. For example, I was eligible for a pump due to frequent hypos when exercising. I exercise more than most but over many years trying many different techniques, I was not able to find a method that allowed me to exercise at my peak whist avoiding hypos with a long term basal insulin. Others need the smaller bolus dose to avoid hypos.

And, in my experience, a pump is not an easy option.

I consider a funded pump a huge privilege not something I expect.
Maybe I would say that because I am one of the "lucky" ones who have a pump ... although I did not consider myself lucky when I was expeciencing all those hypos when trying to keep myself fit.
 
As a T2 who would LOVE funded access to a CGM, I feel your pain. Those of us who try to be pro-active seem to suffer because we want better control, (and I know some T1's struggle to get them too) If I could only win the lottery .........
 
I guess what Im trying to say behind all this frustration and anger is that:

1. It would make sense to at least consider an insentive for those of us insignificant people! who are not worthy of good technology! but manage to obtain better control, to be considered a little bit worthy of pumps/cgms.

2. When those geniuses at NICE say one can have a pump if they have frequent hypos/hypers it's just self-evident that they have NO IDEA! what type one diabetes is. Frequent hypers and hypos is the very nature of type one diabetes. not something that might happen to certain people with diabetes. They simply dont GET IT!?
 
Hello @payam7777777

These are simply NICE guidelines - you need to talk to your DSN about pump access, each hospital has it's own criteria, if you build a good relationship with your team they will understand what effort your putting in to manage your T1d control and what effect this is having on you. T1d is not simply about NICE guidelines, each T1d has their own set of struggles/challenges which can't be categorised, if your team feels that you would benefit from pump therapy then they will support you.
 
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