MDI Regime no longer works, but no funding for pump!

Michey

Member
Messages
16
Hi there,
I posted on here last week regarding my high morning readings, trust me when I say i've tried EVERYTHING - more levemir, less levemir, splitting dose, changing times, vinegar, nuts, red wine, cheese, testing every hour throughout the night, adding quick actings through the night..... you get the idea! Still eratic, no patterns and completely unmanageable.
Well, I saw my diabetic team this morning and they agree the basal, bolus regime is no longer working for me. Because i've had diabetes for 22 years my digestion is slow and my absorption is knackered, so trying to control my levels over night with an injection of background no longer works. They have referred me for pump which scares the hell out of me but it has to be better than this...........
Then i'm told even though I've been referred, I might not get a pump - it all depends on whether they can get the funding and because they've had to reduce staff levels its getting harder and harder. :cry: I can't win!!!
My husband and I can't afford private, I was made redundant this year and i'm on contract work. We wanted to try for a family, but with levels of 8.4 HBA1C on this regime, thats never gonna happen.

Has anyone else been in this situation? What did you do? Can I get help from anywhere other than the NHS? I need a pump, I can't afford it and neither can they so i'm stuck!!! And it means we can't have children as my levels will not improve without getting the morning reading down.
I appreciate ANY advice and thank you.
Feeling very low and disheartened by the whole system.
 

iHs

Well-Known Member
Messages
4,595
Hello Michey

I'm not sure what to make of your msg. As far as I am aware (unless things have now changed) if a consultant has applied to your PCT using the NICE criteria for them to fund you an insulin pump then the PCT can't say no. I would contact INPUT (google INPUT me) and tell them what has been said to you. Input might be able to fight on your behalf.
 

jopar

Well-Known Member
Messages
2,222
If your consultant says you need a pump, then the PCT got to cough up with funding... If you need help then as said contact www.input.me.uk they will be able to help you..

Concerning you morning readings..

Have you looked at the types of food your are eating the evening before such are you some days eating pasta other days not... How about exercise routines the day before?

These could be things that could be effecting your morning readings!

Are you sure you'll not sleeping through night-time hypo's?

And do you suffer from Dawn P, where your BG raises in the morning sometimes exercise/foods the previous day can aggervate Dawn P, as you hit insulin resistence so levels can increase more rapidly..

A good thing to do is a an intensive diary keeping exercise for a week or a couple of weeks, writing in it every morsal you eat, all the exercise/activity you've done whether you've felt stressed at work or stressed in general.. And at what part of the monthyly cycle you are running through.. Then compare these to your reading might through up some idea where you problems might lay
 

Vikki2

Well-Known Member
Messages
45
Oh, I'm so mad on your behalf...
Yes, we have experienced a very similar thing. When the 'honeymoon' period finished we lost all control of my 6 yr old daughter's diabetes (she was 5 then). It was an awful time. The consultant said she desperately needed to be on a pump but that there was an issue with funding. So we 'went into battle'.
Firstly, please don't be scared of the pump. All I can tell you is our experience but it has honestly been the best thing ever. She's been on the pump 1 yr now. It's brought back into our lives 'normality', spontaneity & flexibility. She has great control and an Hba1c under 7. You don't just 'hook up & go' though. Be prepared for a lot of hard work at the beginning to get it right but once you do you won't look back.
We 'fought' non stop for 6 months until they gave us a pump. We got good advice from Input and from IPAG (Scottish equivalent); contacted MSP's; Scottish Parliament; the press and anyone we could think of. In the week leading up to their decision to give us a pump they must have been receiving calls & emails every single day on our behalf. We had some back up plans: I spoke to my GP who was willing to refer us elsewhere. This included London – we live outside Edinburgh but were willing to travel anywhere. Basically, every single day I contacted someone for help.
I also have a friend in the middle of the same battle on behalf of her daughter and in addition to this she is contacting successful entrepreneurs & businesses in her area to see if they would be willing to sponsor them.
Plus I have heard of someone who got a pump the minute she said she wanted to start a family.
I wish you every luck in this.
Keep strong
Vikki
 

smidge

Well-Known Member
Messages
1,761
Type of diabetes
LADA
Treatment type
Insulin
Hi Michey!

Wish I could help you. I had a different situation, but being denied the tests I needed to diagnose me properly. I contacted my local PALS team (patient advisory and liaison). They were brilliant. Told me my rights. When I quoted my rights at the consultant/registrar, the test were funded instantly. Definitely worth a try contacting your PALS team.

Smidge
 

Twitterology

Active Member
Messages
41
In one sense this is straightforward. You are entitled to a pump based on NICE criteria or the equivalent in other healthcare systems. Ask your GP to refer you to a pump centre. This is your right.
 

Michey

Member
Messages
16
Thank you all so much for your replies. The information you have given me is so valuable. I really do think its a post code lottery sometimes and I promise to fight till the end, I won't give up.
In the meantime I'm still going to work hard on my MDI regime as I don't know how long it will take to get the pump and its the next best thing.
I've been keeping detailed diaries of everything I eat and any exercise I do etc.
An interesting pattern is evolving! If I have quick acting close to bedtime, my levels are much better during the night. So last night I tried an experiment........
As always my sugars were normal before bed (7mmol) and I always eat dinner at least 4 hours before bed so most quick acting will be out of my system and i'll be running on background. I've been eating the same meal at dinner for weeks so GI, food release times will always be the same - roasted veg, chicken and new potatoes.
I ate a bowl of cereal (measured) and injected some quick acting based on my evening ratio of 1:4.
I tested at 2am - 5.5mmol
I tested at 4am - 5.8mmol
On waking at 7.30am 6.1mmol
I was jumping around the bedroom!! The best levels throughout the night in years!!
I'm trying not to get too excited, but I will try the same again tonight and see if it works. I'm pretty sure I suffer from Dawn P so hopefully this could be my answer. Fingers crossed everyone!