Hospital Appointment- or lack of....

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bushydougie

bushydougie

Joined
Jun 24, 2010
Messages
446
I am so very annoyed!!!
I last saw my GI on 1st December and was supposed to see him again in 2 months time. Normally they are really good and my appointment letter gets sent out super quickly. So a couple of weeks ago, when I hadn't got my letter yet, I phoned up to check. They said I should be getting it through anytime soon.
Today I phoned up my GI's secretary again as I still haven't got an appointment and she told me that the waiting time is now 5 months!!!! I almost fell of my chair!
Apparently the hospital has changed their system and if you have an appointment for 6 weeks time or less you get an appointment straight away if it's over 6 weeks you get added to the waiting list. How on earth does this make any sense?
I tried to explain that I was coming off my medication (Entocort) and the GI wanted to see me before I came off it as the next step could be aza but apparently the only thing I can do to get an earlier appointment is to get my GP to write to them and ask.
I'm so annoyed as I was hoping to see him before finishing the meds. Now I'm probably going to finish them and still not see him for ages. I shall be phoning my GP tomorrow and trying to explain the situation...
Sorry for the vent!
 
That sucks bushy!!!!

And sure as hell makes no sense at all. Can the GP ring the GI, writing a letter seems a bit archiac, or any chance you can ring and speak with him??

Dusty. :hug:
 
It is ridiculous. I think his secretary thinks it's bonkers too as she said that if the GP writes a letter (and if others do too) then they might realise the system isn't working. Argh!!!! I could scream
I'll phone my GP tomorrow and see what he can do but letters seem to be the only way forwards (how retro!)
 
Aww bushy I really feel for you. I wish I was there to go in and bat for you!

I so hope the GP can get this sorted for you. Good luck hun and keep us posted!

Lots of love, :hug:
Dusty
 
That is ludicrous, I bet the hospital consultants are hopping as will the gp when he/she learns of his/her new role as appointment clerk. At my hospital you make your appointment on the way out from the appointment with a card which the consultant has written on when to see next. Though I am still on 2-4 weekly reviews so that may change if I ever get to a longer interval.
All these changes get made by non clinical staff who frankly know nothing about patient care.
 
get his email address from the hospital register or google it and write to him, I did this a few times (not all the time) didn't want him to think I was stalking him, but it's a great way of getting quick advice without an appointment. Hope it works for you
 
hey busheydougie,i know how you feel.i only see my GI every 6mnths and got a letter just before i was due my visit to say that due to clinical whatevers the app was rescheduled.now from last october to this march.that means it'll be nearly a year.feck ridiculous.only saving grace is i have a number for a gastric nurse that i can access easier,just as bloody well.
 
Hi Sam, what a nightmare!
Do you happen to have an IBD nurse that you can get hold of to explain the problem? Mine's pretty good, in that she will try and fit me in to the next weeks out patients as what she calls an 'add on'- speaking of which she's done for next Weds. Just a thought..
What I would say though, if it's not possible to get an earlier apt before you stop the Entocort, then ring them as soon as thing's start to get bad again (hoping it doesn't for you), but don't allow yourself to be fobbed off until you see/speak to someone at your Gastro dept.
I'm counting myself lucky here that we don't seem to have your apt system...YET!
Hope thing's continue to go well for you once you've stopped the meds,
And x
 
Thank you to all of you for your help and support!
I phoned up my GP's surgery today and the secretary is going to write a letter to the GI to try and speed up my appointment. The GI even sent a letter to my GP saying I will be seeing him in 2 months!!
I don't have an IBD nurse or anything like that. It's never been mentioned in clinic. Up to now they have always been excellent at sending out appointments etc. This new way is definately not working!
If I do get more symptoms returning I can phone up my GI's secretary and she will email my GI. I did this when tapering pred so I know I have that as a back up.
Still fuming mind ;)
 
Definately dont stand for it and harrass them until you get an appointment.

Would also be worth asking about an IBD nurse, which are normally used to monitor how you are. May have more chance in seeing them
 
Wow Sam, that's crazy! Sounds like a bad system if it involves letter-writing! I hope your GP or the GI nurse is able to get you bumped up sooner. If not, you might want to try crying on the phone, that worked for me when I was told I had to wait 3 months for my colonoscopy. I called back in tears (genuine tears, I really was upset, didn't just force myself to cry for sympathy or anything like that) and told them that I was in pain and couldn't wait that long - and I got bumped up to having my scope the following week. So that really does work, at least it did for me. Worth a try anyway if nothing else works.

I hope you're able to get in to your GI soon! If you can't and your symptoms return, could your GP do anything like prescribe more Ento or pred?
 
Thanks for your support Rygon and Cat. I'm going to wait a week or so and see what happens with the gps letter. I've got 10 more days on Entocort. If after that I decline at all I'll be on the phone to my GI's secretary. My gp doesn't like sorting out my meds as that's the GI's job (?) and anyhow they've said the next stage would be aza anyhow so I'm guessin I'll have to see my GI before starting that...
Hopefully I'll get an appointment sometime in the next month so I can feel more relaxed about being steroid free ;)
 
Sam, if it makes you feel any better about stopping Entocort, I've been off of it since Thursday and I'm still doing pretty well. I had some d on Saturday but normal BMs since then. And as you know, I went from 6 mg to nothing without tapering to 3 mg first, so I was sure I'd flare - but so far, I still feel okay! So I'm really hoping you are able to get off the Entocort with no problems also, especially since you did taper to 3 mg. Good luck, I hope it goes well AND I hope you can see your GI soon! Fingers crossed for you!
 
Thanks Cat. I'm so glad to have an update from you too. I've been wondering how you've been getting on.
I had many trips to the toilet yesterday and had awful stomach pains this morn but it seems to have settled down now. You just never know what's round the corner. As you well know it's hard to stay positive when it's so unknown but I've got my fingers crossed for the pair of us. Luckily I'm on holiday next week when I stop so at least I can rest
 
Hiya Sam
hope you're feeling a bit better, have you got end of termitis as well as feeling poorly?
Lucky me, I've broke up.
Just a thought, if you've got 10 days left of Entocort, then phone GI secretary tomorrow and get an appt that will co inside with the finished meds? And get the ball rolling, And tell said secretary that you're feeling ill, need an emergency appt. Waiting for a letter will take ages, Hope that makes sense, I'm tired!
xxx
 
Thank Joan. Deffo looking forward to the hols. Kids are so tired. Still only got 2 more days left!
Hope you're enjoying your holiday.
I'm feeling a lot better thanks. Hopefully it was just a blip. Don't feel I could ask for an emergency appointment at the mo as I don't feel that ill and would hate to take the appointment from someone who needs it. However if I feel any worse I shall definitely be phoning up and requesting to be seen. Hopefully I won't need to :)
 
In my experience, GP's letters to consultants seldom provoke a sensible response. If you are not doing well get on the phone to the GI's secretary sooner rather than later.

Mark
 
Thanks Mark. I shall give it another week and then check the letters been sent but if I decline I shall definitely get in touch and plead for an appointment. I do not want to go backwards and feel ill again!!
 
Yay! I phoned the hospital today and I have an appointment for 17th March!
I'm so happy! And relieved.
I also found out that my GPs secretary sent the letter off the same day as I phoned up so I can't complain ;)
I'm hoping that the wait in getting an appointment is a good thing as I will have been off Entocort for 3 weeks then so hopefully I'll be able to tell how my body is without the medication.
Am having difficulty (again) telling how I'm doing without meds and if how I'm feeling is normal, part of coming off the Entocort or problems returning. It's so hard!
Thanks again to you all for your support and ideas :)
 
Great news Sam!
Just over a fortnight to wait now, hope you're feeling ok
xxx
 
Yay Sam, so glad you finally got an appointment! I hope you feel well in the meantime or at least are able to figure out if what you're feeling is steroid withdrawal or symptoms returning or what (I hope it's none of those things!). As you know I was put right back on Entocort after being off for just one week, and I'll likely be coming off it again in May so that I can undergo more testing. Are you going to have any more tests now that you're off of Ento? Maybe we can be like twins again and go through more tests at the same time. ;) My GI mentioned MR-Enteroscopy (which is apparently an MRI but it looks specifically at the guts - I had an MRI a few months back but that was to check on my liver as the CT scan had detected a lesion on it - fortunately it was benign). I've never had barium swallow or barium enema either so I think those are in my future as well. I think you've had a barium swallow, right? Have you had the pill cam?

I'm babbling, but anyway, I hope you feel well and I hope you have a productive GI appointment in 2 weeks. Let us know how it goes and what the next step is for you!
 
Thanks Joan and Cat :)
It's certainly a relief to know Ive got an appointment
My GI said they're not going to put me through any more tests last time I saw him. Am not sure how long this will last but I'm quite happy about that ;)
I'm feeling increasingly tired again which was one of my worst symptoms pre steroids so I'm hoping it's just a blip or something. It's so hard to get in tune with your body and to work out what is going on!!
 
Hi Sam,
Glad you have a GI appt booked, sometimes we have to jump through circus hoops to get things going.

"I do not want to go backwards and feel ill again!! "
Ya, you said it, but many of us feel that way!
Sometimes it feels like one step forward and two steps back.
Other times it can just feel back. sigh

A vacation from unpleasant medical tests sounds nyice! (deliberate mispell)
If travel agents ran ads for that in the paper, I'd pay dearly for a ticket!
Being tired all the time can make life feel like we are marching uphill.
Hope you get some good answers,
be as well as you can be
Walt

ps enjoy your time off
:D
 
Hi Walt,
Thanks for your advice.
I know what you mean about not having any more tests (but it can be a little frustrating too when I don't yet have a "proper" diagnosis)
Hopefully I'll know more next week after seeing the GI...
Fatigue sucks big time!!
Hope you are doing ok?

Sam
 
So...
I saw my GI on Thursday after the stupid wait and GP's letter.
He has complained to his boss at the hospital about the new appointment system. He said he wants to see me in another 2 months but it might be a bit longer than that with regards to the new system.
And yet yesterday, in the post, I got a letter for my next appointment. 11th May! I nearly fell over with excitement ;) ;)
I can't complain at that
 
Good news :thumleft:

When I see my GI, or more likely one of his team, he fills in a form saying in how many months he'd like to see me again. I then take that to the reception and they book in my next appointment there and then.
I am surprised you have to go away and wait for another letter. If anything that is a waste of time, stationery and postage :confused:

Still, it's great news and I hope all goes well for you :)
 
I agree. The system where you make your appointment on the way out works well and you get a time and date that works best for you.
Good news that you got your next appointment as recommended!
 
My GI fills in a similar form which I hand to his secretary however unlike you I then leave that with them and the letter comes out. Two days later is a real record!
I agree that it is a total waste of resources but compared to the complete hastle from last time I am just so happy to have the follow up appointment when it was requested for :)
I guess each nhs trust does things differently...
 
Maybe next time ask his secretary if you can make the next appointment while you're there :) The worst she/he can say is no ;)

I hope all goes well :thumright:
 
Sometimes I can book my next appointment but usually the receptionist has left, or I love this one "I am not logged on"!

Since I had a huge delay once when I left it with secretary (see me June/July, app through for August) I always try my hardest to squeeze an appointment out of them before I go, so I can argue the toss if they try and book me in later than Dr says!
 

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