Appointments - anyone else had issues?

[Pilzy-89]

Hi all - just need to rant a touch. I had an annual review in January this year and was told I would be sent a letter with a 6 month check up and next years annual review. So I received a letter with Jan 2015 on - annual review. Great. Didn't receive anything else until last month when I got a letter saying my appointment had changed to Dec 14 - I kind of skim read this and thought it was my annual review that had been moved. I phoned up this week as I haven't had a 6 month check up - which is annoying because I had finally been honest in January and said I was struggling, reeeeally struggling to keep on top of things. They had said that they would arrange more regular hospital visits if needed. So anyway, I phoned up and asked why I hadn't had an appointment yet and I was told that Dec isn't my annual review but my 6 month appointment (apparently made in Jan - although the letter arrived a month ago?) and due to bank holidays, Tour de France, staff holidays, patient capacity; this was the soonest they could of booked me in for...11 months after my last appointment?! I just wanted to know if anyone else anywhere, but mainly Addenbrookes Cambridge, has had this as it seems to me like I have been fobbed off some what.

 

[semiphonic]

Hi @Pilzy-89 and welcome to the forum

I'm not a T1 and haven't needed any hospital appointments yet (not for diabetes anyway!), I've answered your post to bump it up, hopefully someone who has been in this position can answer soon.
My opinion is that you've been treated very unfairly and your 6 month appointment should be just that!

Totally off topic, I lived in Cambridge for 30 years or so, lots of family still live there and we were there last weekend visiting my parents

 

[Hooked]

I've had the consultant tell me he wants to see me in 3 months time only to finally get an appointment with him again 10 months later. The diabetic team at my hospital are great; but well and truly overstretched!

ETA: That's 10 months later after my mum took matters into her own hands and rang his secretary directly.

 

[robert72]

My consultant said he wanted to see me in 3 months and I had an appointment for August, but it has since been moved to November. A few of my non-diabetic appts have also been rescheduled during this last year, so I think that most hospitals are being squeezed (UCLH in my case).

I used to go to Addenbrookes when first diagnosed but that was way back in the 70s so obviously different today

It would be worth calling your consultant's secretary to explain your situation.

 

[Pilzy-89]

Thanks for all your replies glad I'm not the only one but not glad that it's happening. Shame that hospitals can't cope with the number of patients needing to be seen. I can't believe it's that busy...I used to phone up and arrange an appointment for the next month...blimey.

One worry though, it won't affect anything to do with having a driving license? I thought you had to attend regular appointments - or can this just be yearly? But they would have no way of knowing then if you are fit for a license or not? :\

Well @Hooked my mum is getting involved (uh oh) even though I am 24...she has been annoyed since they put me on a pump had a chat for half an hour, gave me a folder with a few instructions in and sent me on my merry way to learn it all by my self. I wasn't offered DAPHNE and a few years ago when I asked I was told, "you really do need to go on it but we can't because it wouldn't be fair on the other people attending the course - it would make them uncomfortable because you already have a pump." So no thoughts as to how it made me feel or the help it might have given me...just everyone else. Then I had regular meetings with the diabetes nurse, until she went on maternity leave and the person taking over didn't really get the issues I have had and never made the appointments (even when asked) so I just stopped bothering to try.

I just want to start caring for myself, finally dealt with a lot of **** and am looking to future for once and want to make the most of it! Guess all I can do now is do my best and bring my HbA1c down to normal...most recent was something ridiculous like 15%. Oops.

@semiphonic I can't imagine not living in Cambridge, me and the bf are trying to move house atm, house prices are so high...even the housing schemes are not all that affordable!! But I refuse to live anywhere else so just got to work harder and save harder! All the stress might help lower my blood sugar!

 

[Hooked]

Well @Hooked my mum is getting involved (uh oh) even though I am 24...she has been annoyed since they put me on a pump had a chat for half an hour, gave me a folder with a few instructions in and sent me on my merry way to learn it all by my self. I wasn't offered DAPHNE and a few years ago when I asked I was told, "you really do need to go on it but we can't because it wouldn't be fair on the other people attending the course - it would make them uncomfortable because you already have a pump." So no thoughts as to how it made me feel or the help it might have given me...just everyone else. Then I had regular meetings with the diabetes nurse, until she went on maternity leave and the person taking over didn't really get the issues I have had and never made the appointments (even when asked) so I just stopped bothering to try.

I just want to start caring for myself, finally dealt with a lot of **** and am looking to future for once and want to make the most of it! Guess all I can do now is do my best and bring my HbA1c down to normal...most recent was something ridiculous like 15%. Oops.

Lol, I'm in my late 30s and it took my mum getting involved. Doesn't matter how old we get, we still need our mammies from time to time.
That's disgraceful about the DAFNE course. I would have been asking what makes me less important than their other patients that I couldn't have the same access to potentially life changing education as they do. No one would feel uncomfortable about someone else having a pump, curious or wanting to learn more about it more like!

Yes, you are right, at the end of the day it's about you and your health. Working at good numbers is never about impressing medical staff, it's about your quality of life. Good to see you are willing to do it for you. Fingers crossed the help from your diabetes team improves soon.

Regarding driving, I haven't a clue as I don't drive.

 

[Cloe-1992]

Hey pilzy .

Wow what a nightmare you sound as if you've had with appointments .
I'm very lucky and get seen regular and with in the correct length of time .
I'm not much younger than you I am 22 , and have had diabetes for 15 years now . I'm on mdi by choice haha . Never warmed to the idea of a pump . But hopefully with your plans to lower your hba1c the pump will help you out massively . Is so bad how they just let you get on with it basically with out a great deal of input on how to use it . I hope you can lower your hba1c . Good luck .
Always about if you ever want to talk .

Take care cloe .

 

[semiphonic]

I can't imagine not living in Cambridge, me and the bf are trying to move house atm, house prices are so high...even the housing schemes are not all that affordable!! But I refuse to live anywhere else so just got to work harder and save harder! All the stress might help lower my blood sugar!

I really sympathise, I couldn't afford to move back if I wanted to! Bad news, stress usually raises blood sugar......

 

[ElyDave]

Hi all - just need to rant a touch. I had an annual review in January this year and was told I would be sent a letter with a 6 month check up and next years annual review. So I received a letter with Jan 2015 on - annual review. Great. Didn't receive anything else until last month when I got a letter saying my appointment had changed to Dec 14 - I kind of skim read this and thought it was my annual review that had been moved. I phoned up this week as I haven't had a 6 month check up - which is annoying because I had finally been honest in January and said I was struggling, reeeeally struggling to keep on top of things. They had said that they would arrange more regular hospital visits if needed. So anyway, I phoned up and asked why I hadn't had an appointment yet and I was told that Dec isn't my annual review but my 6 month appointment (apparently made in Jan - although the letter arrived a month ago?) and due to bank holidays, Tour de France, staff holidays, patient capacity; this was the soonest they could of booked me in for...11 months after my last appointment?! I just wanted to know if anyone else anywhere, but mainly Addenbrookes Cambridge, has had this as it seems to me like I have been fobbed off some what.

yep, I'm at Addenbrookes as well and getting incredibl;y frustrated by their appointments system. To me it seems like a random number generator that just spits out appointments with no thought whatsoever.

The appointment times seem arranged entirely at the convenience of staff rather than patients. I can't tell you how many times I've explained that I travel a lot with work, usually Monday evening to Friday, so an appoinment early on a Monday would be a real help. So when do they send me appointments? 4pm Tuesday

For my pump days, I've been asking them to confirm the dates in October for the last 3-months as I need to plan ahead by 6-months and need to tell people I'll be unavailable. They finally told me last week.

Indivudually al the DSNs and docs are as helpful as they can be, but I think the admin folks live in their own little world and their own little system with no idea of the consequences.

 

[Pilzy-89]

@semiphonic how strange, stress and nerves and getting angry lower mine!

@ElyDave I completely agree with what you say about admin...I think they were having a laugh with me last week they put me through to two or three different extensions 1 of which was staff voicemail...go figure. I got a teeeeensy bit frustrated. The funny thing is that I know someone else who had their annual review after me and made their appointment after me but has managed to get an appointment next month!! Frustrating.

@Cloe-1992 hey the funny thing is is that I have been on the pump for 8 years (diabetic for 13)...my diabetes went a tad haywire before I was on it and was on near 10 injections a day. Sometimes I wonder if going to pump was the right choice or not. But now I have it I have been told I can't go back incase pump is the right choice and I can't go back onto it. Makes sense really, just a bit annoying.

 

[Cloe-1992]

Hello again
Oh wow didn't realise that sorry lol , you've been on it quiet a while then .
Wow that does sound a lot of injections needing to be done , but then I guess if that's what you needed it had to be done lol .
What are your reasons for questioning wether the pump was the right choice for you or not ? What do you feel you had better control on or hba1c results pump or mdi . Oh I see there , I can imagine must be very frustrating for you .
Stay strong