Is NHS care slipping or is it me?

[Molewitters]

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:

 

[ebony321]

awwwe! bless you.

How awful that all this is happening but nobody seems to be consistent enough or helping you.

i'm definately no expert but i just wanted to say hi to maybe make you feel a little better and i'm sure your not the only one being treated this way..

it certainly does seem very silly to give you only have the equipment (pump and no CGM)

maybe if you 'borrowed' it for 30 days then the results would be even more proof a permenant one would be extremely beneficial for you!

They should have had red lights flashing when you mention no hypo awareness as far as my thinking goes!

Can you request to be treated somewhere else? be transferred to another clinic, this may result in travelling far but certainly worth having the right treatment for you?

I know not everyoe is perfect and i think most people can recite a bad experience with the NHS but it sounds like your getting a really bad time with them!

I'm sorry if i can;t be more helpful and i'm sure some of the super knowledgable diabetes members will be here to help you out..

Hope it gets better for you and you find a way around it all.

ebony

 

[Molewitters]

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.

 

[jopar]

Not sure where in Devon where you get your treatment, but there's Plymouth, Exeter (very good diabetic research etc) Moving into somerset you've got Taunton, Bristol onto Dorset you've got Bournmouth Royal (another very forward diabetic clinic)...

CGM's aren't governed by NICE guidelines so it's extremely difficult to get funding, so you have to make a case to the special funding comittee/board of your PCT, INPUT will have the information on the process, plus the names of pump consultants for each clinic...

Is there any possibility that you could self fund the CGM part of your pump, many pumpers do, most who do this decide not to use it 24/7 but use it in periods of perhaps a week or so at a time etc.. Many have found ways of extending the senors working times so they reduce the cost a little further..

I'm not sure whether NICE has started to avaluate the CGM yet, but they were due to start so hopefully were not too far of from having some NICE guidelines to ensure that CGM are avaiable for PCT funding..

 

[ebony321]

I definately agree with the cost of a CGM is nothing compared to the cost of hospital stays or dialasis or other costs that can be brought on by not having good control of diabetes.

I'm the same as you when it comes to medical doctors i'm a bit scared to say when i think something is wrong, do you have someone who would be willing to come with you and not take no for an answer?

i take my mum even though im 22! she definately fights for something for me.

Jopar's post will be very useful with the clinic you could change to, i know i've read on here before that some people haven't had access to the DAFNE course in their area but have successfully been able to do it somewhere else.

It's definately useful and if anyone would benefit im sure you would be at the top of the list.

I've only had diabetes for about 18 months now so i have had changes of medication apart from going from mixed insulin to the basal/bolus regime and when i insisted i wanted to swap my team was hesitant but agreed and i still stand by my decision,

but i guess thats a small comparision to the difference of wanting a CGM...

i also agree with Jopar about making a case to the comitee/board of your PCT.

If your doctor won't allow one then go to the person above until someone will sit down with you and let you tell your situation.


I really do hope you get one, i know CGM's can be very useful from what i've read and i've also seen someone on here who states in their signature that they have one but i can't remember who and i think they may pay for the equipment needed but had the monitor paid for by the NHS.

good luck and don't give up!!

Update us on how your getting along and i'm sure there's people like Jopar who can assist you really well, and i can just be here to add my little piece and say keep going!

 

[losrosales]

i know exactly how you feel .I have been a type 1 for 30 yrs and have been on a pump for 5yrs this year was given the new VEO.Like you i am from Devon and i thought why give me a supposed brilliant new piece of equipment but without the bit that makes it that good the minilink transmitter and sensor.You know i have been having trouble with night time hypos and getting no warning so they become severe leaving me feeling quite ill for a day after .The hospital say the same thing no money but surely it is less money if im going into hospital regularly for appointments to try and find out just what the problem is .Three times in June and the same answer "ergh dont know what the prob is come back in a month"