Annual review worry.

Status
Not open for further replies.
rachelha

rachelha

Well-Known Member
Relationship to Diabetes
Type 1
Grrrrr

I have my annual review tomorrow. I hate these things. I get really stressed out by it and often end up crying at the consultant. I am now attending what they call the "complicated type 1" clinic. I guess I should be glad of this, as it means they are acknowledging that I need more support.

I want to try and remain calm and go in with a list of questions relating to pump funding, but I have a feeling I will just turn into a snivelling wreck like normal.

I think they will also be asking me how I have got on since going on a DAFNE course about 3 months ago. I had v v high hopes for DAFNE having first read about it years ago, but as I already carb count, test like a maniac and record everything it did not provide the answer to alot of my problems. I don't want to be negative about the course as I know they are struggling for continuing funding for them, and alot of people on the course with me found it v helpful, but for me I dont think it made much difference. Maybe there was just no way it could have lived up to my expectations.

I also don't really want to hear what my Hba1c is. It was not awful last time 7.6 (good for me) but it is not within the recommended range for pregnancy, and my blood glucose varies wildly. We have been given the go ahead to start trying for kids despite this, but I do worry that I am being v selfish trying for a child when I can not provide it with a healthy body to grow in.

sorry needed to vent
 
I'm sure your annual review wont be so bad. Hopefully you will get more support, especially as you want a child.

Good luck with everything and let us know how you get on.
 
Rachel,

Hope tomorrow goes well, and the results are better than you expect:D

Give them a moan about the pump, go-on!

Hope you walk out of there positively!

Rossi 🙂
 
Hi Rachel,

I do empathise with you - in a very similar situation! I hope tomorrow goes ok - dont worry, I cry in front of the consultant too! (last time it was also in front of the student nurse so I felt really great! not!) Are you getting a pump? My DSN says I may be eligible for one as my husband and I would like to conceive, but I dont know enough about them to judge whether I should push for this. My last hba1c was 8% last time, but I have been trying SO hard to get it down so we can have a family, that im quite nervous about the results next Tues.

Im also jealous you went on DAFNE - Worcs doesnt do it so im trying to apply to get sent to nearby county, and im just going round in circles - now the PALS (patient advice and liaison service) are involved; seems such an uphill struggle to me. I am now questioning the value...

It sounds as if you monitor yourself quite closely so surely thats a really good start for having a family. I will cross my fingers for you tomorrow.

Fe x
 
Fe 82 said:
Hi Rachel,

I do empathise with you - in a very similar situation! I hope tomorrow goes ok - dont worry, I cry in front of the consultant too! (last time it was also in front of the student nurse so I felt really great! not!) Are you getting a pump? My DSN says I may be eligible for one as my husband and I would like to conceive, but I dont know enough about them to judge whether I should push for this. My last hba1c was 8% last time, but I have been trying SO hard to get it down so we can have a family, that im quite nervous about the results next Tues.

Im also jealous you went on DAFNE - Worcs doesnt do it so im trying to apply to get sent to nearby county, and im just going round in circles - now the PALS (patient advice and liaison service) are involved; seems such an uphill struggle to me. I am now questioning the value...

It sounds as if you monitor yourself quite closely so surely thats a really good start for having a family. I will cross my fingers for you tomorrow.

Fe x
Click to expand...

Fe - I was approved for a pump back in May, but the waiting list here is 18 months long. I dont know if it is as bad where you are but I would start the process of getting on the pump sooner rather than later. As I am 35 I dont feel that I can wait to get the pump before starting to try, but I am constantly worrying about whether this is a wise decision, or if I am putting my need for a child before the potential problems I could cause it by poor control. I have been going to a pre-pregnancy clinic for over a year now which has helped. My Hba1c was over 8 this time last year, so it is better now, but still not good enough (my last check was about 2 months ago and I doubt it has come down since then).
I hope you get good results next week - let me know how you get on
 
Good luck with your annual review - but it's not really a question of luck. You're doing the best you can - and that's good enough! Worry affects both blood sugars and developing foeuses / babies - but it's hard not to worry...
I'm not advocating irresponsible behaviour in pregnancy, but if you think about recommendations for alcohol intake during pregancy, and then think how many babies are conceived when one or both parents have some alcohol in their blood stream, but turn out fine, usually after mother has given up alcohol for the remainer of the pregnancy, while envying father and friends...
 
Well as predicted I ended up snivelling at the Doctor. My Hba1c is down to 7.4 which I am pleased with, but this is with having my life completely ruled by diabetes and having a lot of problems.

Every time I asked for advice about any of the problems I have the answer I got was there is nothing you can do about that at the moment, but the pump will help. That is not a lot of use when the pump is a year away.

Eventually he realised how desperate (his words) I am for the pump, and they have agreed to provide the training if I self fund it. I am not sure how I feel about this, I know it is not an answer at all to the bigger picture. My work have said they will give me a salary advance I could pay off over 18 months so financially it is just about feasible. I am annoyed that they did not let me do this when I first asked about self-funding 6 months ago. I could be on the pump by now if they had. It has all been getting to me so much that the diabetic clinic have referred me to a psychiatrist, I have seen her once and am going back next week. She wants to put me back on anti-depressants - don't know how I feel about this either.

There is so much to think, and decide about, my head is a spin.
 
Oh Rachel, I'm so sorry you've had it so rough.. I hope that you get the help that you need. I can't begin to imagine how much frustration and confusion you must be feeling and can only hope that it gets sorted soon.

Take care

Karina
 
Is there anyway you could pay for the pump and then the PCT will pay for the consumables? I really don't think you should have to pay for anything yourself, it is really disgraceful.

I hope you find the psychiatrist helpful, I was offered to see the psychologist at my clinic before but declined at that time. As for the antidepressants, only you can decide. You can always give yourself some time to think about it.

Hope things start to look up for you soon
 
Well - after some very confusing emails from the DSN which completely contradicted what the consultant said, I managed to speak to the DSN and it turns out I can not self-fund the pump because of there would be no-one to train me on it.

I wish the consultant had never mentioned it as it got my hopes up, I spent quite a while trying to work out if we could afford it, including asking my work if I could have a salary advance towards some of it (which they agreed to, really good of them), and had a very stressful few days.


grrrrr
 
Can the reps from the pump company train people to use the pump? And then the DSN's take over the long term care.
Or could you get referred to another hospital which has DSN's avalible to do the training?
Have you made complaints to the PCT, PALS etc ?
Does sound very stressful for you
 
sofaraway said:
Can the reps from the pump company train people to use the pump? And then the DSN's take over the long term care.
Or could you get referred to another hospital which has DSN's avalible to do the training?
Have you made complaints to the PCT, PALS etc ?
Does sound very stressful for you
Click to expand...


Sofaraway - Thanks for your comments
I asked about the pump company doing the training, but I would not get any support from the clinic at all until I reach the top of the list. Apparently this will be around August (which is not as bad as I thought it might be). I had not tought of getting trained by a different hospital, I know my hospital do the training for all of the Lothians and the rest of Scotland is even worse, so dont think this would be possible either, but I will ask.

I have just put letters in the post to my MSP, Nicola Sturgeon and the head of the PCT. I will add PALS to the list too.
 
Sorry can't be of more help, seems like have/are exploring all avenues.

What are your team doing in the meantime to help you? Have they suggested possible ways to get around the problems you are experiencing? Although the pump might provide solutions to the difficulties you are having, they should be looking at how they can help now. I hope they are supporting you now and not just saying wait for the pump.
 
That is what is so annoying, they are pretty much saying just wait for the pump. I asked if I could use the CGMS they loan out, but was told there was not really any point, as until I get the pump I would not be able to do anything to correct the problems I saw in the results of it. Very, very frustrating. I am not sure what they will do if/when I get pregnant.
 
Hi Rachel,

the CGMS at least would give you and your DSN, consultant etc an idea of where your highs and lows are over a 24 hour period then you can make adjustments then repeat it to see what effact it has had on your control. To say that it is not useful now is ludicrous and sounds like a brush off to me.
It might highlight areas where you didn't realise you wre going high or that other things were affecting your control that you didn't realise, such as stress(which you appear to be under alot at the moment!) exercise etc.
The sensors cost the providers around ?40 each and can be worn for 3 days maximum but that records your blood glucose every 5 minutes over that period of time so should give enough info to help fine tune your blood glucose.
It takes 5 mins if that to download the info you just need one of your team to go through it with you.
Feel so frustrated for you, hope this of some help.:confused:🙂
Big hug on its way to you.
 
Hello all

It was the psychiatrist appointment today, I am going to get an assessment with a CPN who I saw a while back which should be helpful. I actually scored higher on the questionnaire for anxiety than depression which does not suprise me at all. I am going to go back on the anti-depressants though as they help with anxiety too. The consultant has assured us there is no problem with being on anti-depressants and getting pregnancy, but it does feel a bit weird. She says that my high stress levels are probably hindering conception and would be more harmful for a baby than the anti-depressants.
 
I have just had a CGMS since Monday, gave it back this morning. That is ridiculous they told you its not worth it. I have had to do one of these before I can apply for the pump. Good to see the NHS are operating their yoyo decision making again. Get my results in a couple of days.
I had an hba1c of 6.7% on Tuesday. However because Im hypoing early in the mornings, they dont want me to conceive until I stop going so low.
Another waiting game!
I really hope you at least can get a CGMS. It is rubbish to say you cant do anything about the results - I intend to! My DSN is equally as positive about this.
x
 
Hi Fe 82

I did have a go on a CGMS about a year ago, which I think proved to them that although my Hba1c was not awful (about 8.2 then) it went up and down like a yoyo, and there were very few patterns to it. I would like another go on it now, as I think I have probably improved my carb counting in the last year and I vary what I eat a lot less, so I think there would be more chance of it showing some patterns that I could do something with - unfortuntely the clinic do not agree with me. Very annoying, and they wonder why I am so stressed out.

I hope your results show something useful, I will be interested to hear how it goes.
 
Status
Not open for further replies.
Back
Top