Is NHS care slipping or is it me?

I am sooooo frustratrated at the level of care given to us Diabetics :x

I've been a Type 1 for 28 years out of 30 and on a pump for 3 years now. Most of my life I have struggled to control it and it has been described as Brittle/non-text book Diabetic. Two name a few problems; I've been in ITU twice with Ketoacidosis caused by a cold and a urine infection. I can't remember how many types of insulin I have been through and just stopped responding to it, result back in hospital.

In April this year they swapped me to the new pump Medtronic VEO because of it's CGM capability but it has made no difference to my life because it is only half working. It seems that the NHS won't fund the CGM part on an ongoing basis. I can borrow it for 30 days and then give the CGM equipment back but there is a waiting list and no one will give me a straight answer. From what I have read about them it could help to improve my life when used regularly and seeing as I have no hypo awareness and wanting to start a family I agreed to the swap in the first place.

Now I have this new pump but I can't use it properly and then only for 30 days. What I would really like to know is what is the point in using a Continuous Glucose Monitor only for 30 days? And what was the point in having a CGM ready pump if there isn't a CGM available?

And that's not all I am frustrated about.

I am just back from yet another clinic with a consultant (last one was three weeks ago). After waiting 15 minutes to get in (5 of which she spent reading my file) I then had to wait while she read it again in front of me while trying to work out where she should put her comments! She didn't want me to explain what had been happening this last six months, or last six days! Nor was she interested in the fact that I had had 10 hypos in the last month and that I have no hypo awareness which is why I do so many tests.

She did look at my BG printouts long enough to ask if she could keep them and then said that I didn't need to stay while she typed them into the computer which would take 25 minutes!!! :twisted: I had to ask her to look at them and then ask again if she thought I was doing the right thing because not a lot seemed to have changed since my last clinic on 4th June.

I don't like bad mouthing people and I hate the fact that I am doing it now but I feel so frustrated that I could cry :cry: I went to the clinic hoping to get help but instead feel that I wasn't needed their. It takes a couple of hours for me to get to the clinic each time and as I don't drive because I can't control my Diabeties for long (that and I can't work out roundabouts!) it has cost me a lot of money. I think my time and theirs would have been better spent if I had simply emailed them my results.

I probably should have said something at the clinic but I just couldn't believe how I was being treated :shock: I now have another appointment in August, wonder if that will be a waste of time as well...

Out of the eight appointments I have had this year I have found that the nurses are more willing to listen and offer help than the Consultants but then you go to the next appointment and see a Consultant who then changes everything around. I feel like a yoyo at times when one method is suggested by a nurse and then changed the next month by a Consultant that doesn't agree!

Sorry for ranting but I am sure that care was better a couple of years back when you would see the same Consultant and they would actually talk ideas through with you on how to help or how you could change things in a way that actually worked.

Has anyone else had these problems?

Molewitters

Type 1 28 years
Medtonic pump Novorapid
Stable for about 5 minutes and feeling sorry for herself. :cry:

Hi Ebony

Thank you.

That's similar to what my husband keeps saying; he tells me I should just refuse to see that particular Consultant and ask to see another there. Being the un-confident person I am I don't have the courage to do it. Afraid of what they will say. It's stupid of me but...

I'm in Devon and I have no idea where the other clinics are or how to find out, let alone move to another. I've always lived in the same area and haven't even moved GP.

As for continually having a CGM - it seems the PCT don't fund them continuously which is what I had been led to believe. Reading up on some other forums and journals on CGMs it has been proven that the Diabetic's control is improved 100% during the use of it. It's the difference between taking a snapshot picture of what your body is doing and using a video to record what it is doing. Yes it is expensive but if you way up the costs of getting things right against getting it wrong and dealing with the complications that come from getting it wrong... Here I go again, sorry I am sore on this. 30 days will have to do if I can get someone to talk to me about it again and not fob me off.

I'd like to do the Dafne course as I think that would help me; I've was taught the principles in one 15 minute appointment four years ago. They all seem to think that I have been on it now and are very surprised when I said I hadn't done it. There probably isn't any funding for it anyway :?

I need some help and I am sure that I will get more help from another Diabetic at this point than I would the NHS. At least we understand what it feels like.

Has you ever tried alternative medicines or know someone who has?
Do you know if changing the times you eat make any difference?

Molewitters

Type 1 28 years
Pumper for 3 years Medtronic VEO on Novarapid
Stable for 5 minutes but determined to fix it one way or the other.