Peoples experience with IBD nurse teams
Posted , 7 users are following.
im just wondering what others experiences are with their teams.
so far I have
had my appts cancelled and rebooked months in advance, so a 2 week review became 10 months.
ive asked ibd nurses for a call back re flare and meds, never get a call back.
i was meant to start aza, but have only gone onto system now, even though I flounced out with the meds 6'weeks ago.
ive had a 5 min chat with the nurse when I was first diagnosed, given a lovely leaflet about medication support and all advice, just leave a message and we will call you back,,,never.
so, the aza, as yet again my 2 month review appt is ooooo 7 months henceforth, I've not started it.
get a call asking when I started, (obviously they panicked as it would have meant being unmonitored) got appt with the nurse,...erm....why can't I get this usually???? As I was ill, I cancelled, now I've been told I failed to show up!
im sorry for the moaning. When I was in hospital in Jan , they tell you the nurses get told you're there, so you expect some sort of follow up.
its never happened.
i feel literally like I am winging it. My last appt in April with the gi, he kept warning me about being steroid dependant, and I must ALWAYS tell the nurses I'm taking them. I've never swallowed one. Not once, not ever.
i was diagnosed in sept and not counting the surgeon as an inpatient and once at his clinic, I have had in total around 30 mins worth of 'time'
ive learned most of what I know from here and crohns uk.
ive been given so much conflicting advice between gi and surgeons too. Moan over sorry
1 like, 16 replies
Bong1968 Alfielefoo
Posted
I wish I could say that your experience was rare but unfortunately it isn't.
I won't see the IBD nurse anymore. If they say to make an appointment to see her instead of the specialist I refuse and say I'd rather not bother.
I can't understand why they say 'We're only a phone call away. Don't hesitate to call if you need us' only to make you feel like you're wasting their time and a complete nuisance when you do!
I only make the mistake of calling once - when I was desperate. This was the first time in 20 odd years that I really needed help. The reaction I got was less than helpful and borderline rude.
I have since told her to her face how that made me feel and, although I didn't hold back, I didn't expect her to burst into tears the way she did! Wimp!
As for cancelled appointments? The bane of my life!
I had surgery 31st March. Was told a follow up appointment would be sent to see the surgeon for 6 weeks after the op. First appointment was 7th July. This was then cancelled and the new one is for 13th October. Glad I'm not holding my breath! will cancel that one myself - for a change!
The specialist also regularly sends update letters with wrong information to my GP. From stating that I'm on medication that I've never been prescribed to my weight being 20kgs less than it is (in my dreams!).
Ah well! I've got to the stage where I can't be bothered with it all and go with the flow (like a dead fish!).
Sorry can't help up much here but wanted you to know you're not alone!
Try and have a good weekend!
Take care! X
Alfielefoo Bong1968
Posted
They often ten say stuff in the letters that I think they imagine after you've gone lol!
I'm glad I'm not alone, but I'm sad we all seem to be.
thanks for all the support on here. Xxxx
AMaria Alfielefoo
Posted
If all else fails, could you ask your GP to refer you elsewhere?
Alfielefoo AMaria
Posted
the appts people here, seem to not actually answer the phones, I've even tried main switchboard to see if I had right number!
i think the nurses are stretched, I really appreciate their plight, but it doesn't really help when you need someone.
sorry more moaning
Chrisor Alfielefoo
Posted
moan all you want. Crohn's is a serious disease . YOU are entitled to moan. Seriously I don't know what to say about how to get the attention you need and are entitled to. How about a new G.P. He might specialise in. crohns himself or know of a nurse who does. Anything is worth a try.
Chris
Alfielefoo Chrisor
Posted
maureen15717 Alfielefoo
Posted
Alfielefoo maureen15717
Posted
i guess maybe because I don't want medication it sort of becomes 'my fault' .
the surgeon whom I've seen is lovely, he has a complete different outlook, said meds won't treat the stricture so there's no point in taking them.
which makes sense to me too.
Stickinsect Alfielefoo
Posted
I had my first GI consultant appt Jan 2015 and was told I would be seen again 3 mths after. I then was sent appt for June 2015 which was then cancelled and rearranged 5 times, the last letter came to cancel my appt in October 2015 and no new one made. It just saI'd I would receive a new appt letter in the post.
After hearing nothing I emailed the IBD nurse team in March 2016 to say I hadn't had appt letter. She chased it up for me and had appt letter within a week for appt 1/6/16.
Surprise, surprise. Thus was been cancelled and reappointed 3 times now and latest one us for 1/7/16. I have to arrange for someone to drive me as husband is working and due to arthritis and joint & nerve pain problems can't drive myself that far. I haven't bothered my friend with all the date changes and she only has the latest one pencilled in on her calender as no doubt this will also be changed.
With my hospital it is dealing with a huge number of patients from outside it's normal catchment area as the one I should come under is completely useless and people won't go there.
Alfielefoo Stickinsect
Posted
id never considered the catchment area, but now you've said that I've realised the one here is massive. Plus the expansion of the area.
i did also notice they've advertised for a locum GI tonight on the job pages. So perhaps this is also part of it?
So youre 18 months into waiting for a 3 month review??? That's awful. It makes mine 'quick'.
i am now thinking that new patients (not just crohns) probably get seen quicker so they're off the 'target' list perhaps?
Twiglet12 Alfielefoo
Posted
Email the Chief Executive of your local hospital telling them how important Specialist IBD Nurses are.
On crohns UK, i have always found the nurses fantastic, there was one time when I rang the ibd nurse helpline, a message said the service was terminated until further notice
The service is now back on. I had a clinic appointment and told the next would be in 3 months, 4 months have past, I have rang the appointment telephone number and they keep
telling me to wait for appointment letter or give me a phone number for the clinic and no one answers.
Alfielefoo Twiglet12
Posted
i did go through pals last time, they were actually quite good.
i shall do the better nurses campaign letter. I did fill in the survey. Our message has changed, it now says if you've had no call in 24 hours, call back.
bella75 Alfielefoo
Posted
Alfielefoo bella75
Posted
maybe the GP can send a letter to consultant? Ask for you to be seen?
it puts you off the meds when you're alone for sure. If nothing else, he can get you sent up there for someone to see you.
good luck tomorrow, let us know how you get on.
so basically you've been sent in circles.
my GP asks if I've called the ibd nurse.
bella75 Alfielefoo
Posted
Alfielefoo bella75
Posted
you have been fobbed off it seems I agree.
and it's taken you chasing to find out about your iron...
i had a letter today saying I'd cancelled several appts because I don't want to take aza...erm...I cancelled 2 appts days apart because I had a throat virus. 'I won't rebook you for clinic, but look forward to seeing you in consultant clinic' how I chuckled, she isn't in his clinics. discussing aza could be done over the phone.
i hope the iron tablets make you feel somewhat better.
rest up. X