Why not?

[T1D Sarah]

Hello!

For a while now I have been asking for an insulin pump.

I have explained that I'm struggling with all these injections everyday and that with Millie being a very active toddler I really need to get my sugars under control so I have the energy to look after her.

However, my nurse has told me no. That the criteria is too strict and I don't qualify. She told me pumps are for children or for those who have bad hypo awareness.

My sugars aren't so bad that I cannot care for my daughter but I defiantly have to take a backseat when it comes to playtime.

What can I do?
Any advice??


T1D Sarah

 

[Juicyj]

@T1D Sarah - It's a tough one as it's down to each trust in regards to their policies for who can get one and who can't. I appreciate you may think that having a pump is easier than injections but each comes with it's own self management principles. So although MDI requires testing and injecting, managing a pump also requires testing and pump management and changing infusion sets every 3 days. Having a pump doesn't automatically grant you perfect control which is a misconception, it can take a good few months before control can be mastered, it requires vigilance and the results need to be reviewed frequently, insulin requirements change frequently and so will the ratios on the pump also. I think if you pin all your hopes on getting one then you will be disappointed, and even if your DSN agrees then it can take up to a year before getting it.

Very often you will be required to show that you have done the DAFNE course and taken every step possible to manage your control first, I would suggest if you haven't done DAFNE yet that you get your DSN to refer you for this and in the meantime focus on becoming the best you can be so your DSN can see you are doing your best which will help you ultimately in getting referred for a pump

 

[himtoo]

it would be worth having a look at this link
Have a look around INPUT - http://www.inputdiabetes.org.uk - it's an great resource for information on how to obtain a pump on the NHS.

I agree completely with @Juicyj on living with a pump.
it is a good tool for good control but requires a lot of patient effort.

 

[noblehead]

However, my nurse has told me no. That the criteria is too strict and I don't qualify. She told me pumps are for children or for those who have bad hypo awareness.

If you don't meet the NICE criteria for a insulin pump @T1D Sarah your consultant can still make a case under the ABCD recommendations (Association of British Clinical Diabetologists), the following is taken from the INPUT link:

ABCD recommends that insulin pump therapy is also considered in the following situations:
• Pregnancy
• Acute painful neuropathy or symptomatic autonomic neuropathy if
conventional treatment fails to enable adequate blood glucose control
• Hypoglycaemia unawareness
• Extreme insulin sensitivity
• Needle phobia
• Severe insulin resistance with poor blood glucose control
(especially if type 2)
• Specific quality of life issues:
– Pathological fear of hypoglycaemia
– Marked glycaemic excursions/dawn phenomenon
– Excessive number of injections for optimised control
– Impaired exercise capacity, abnormal eating behaviour or an unacceptable number of sick days
– Shift work or frequent travel across time zones
– In children: sub-optimal school performance, exclusion from aspects of a full school life; behavioural problems (for example, mealtimes); adverse impact on family dynamics

 

[BeccyB]

I think I would be more worried about catching tubing while running around after them, or it being pulled by little hands!

But it really is a shame that the way pumps are funded means all those that want one can't get one. I have a clinic appointment next week and am going to bring up the subject so I'll be keeping my fingers crossed too

 

[CarbsRok]

I think I would be more worried about catching tubing while running around after them, or it being pulled by little hands!

There is no tubing on show and there defiantly is no issue with tubing and young children around.

 

[Pitsgate]

A child would indeed have to yank the tubing pretty **** hard in order to do any damage. I find door handles are my enemy number one in ripping sets off... And I definitely prefer my toddler fiddling with the pump rather than insulin pens, tho she doesn't as she's not interested in the slightest unless it's a phone or an ipad.
Regards getting a pump: My previous hospital was very unhelpful - had no chance of getting it through them (even tho I fitted the NICE criteria). Within 2 months or so of changing to another hospital (asked my GP for a referral), I had one. So maybe worth having a look at other hospitals, if possible?

 

[Charisma_1630]

I had a long hard fight with my local hospital. I was refered, which was lost and they only realised 12 months later then rereferred after this the consultant really messed me around for a long time, over 2 years later I ended up contacting input who gave me a list of "pro pump" hospitals and said if possible to self refer myself to one on that list. I did this and was approved for my pump at the very first session and pushed up the waiting list due to my previous hospital making me wait so long. I also have a young child and am a single parent which gives me massive anxiety about lows and has a major impact on my quality of life. If possible I would suggest contacting input and consider changing hospitals.