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

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16 Replies

  • Posted

    Sorry to hear that you've been messed around so much.. Bet you feel better for getting it of your chest though? He, he!

    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


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    • Posted

      Bong, it's like mine in a nutshell! However, I did expect you to be seen following your surgery!!! 

      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

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  • Posted

    Can you phone the appointments people?  I've found more recently that that is the best way to get an appointment quickly.  I don't know if the IBD nurses are being stretched further that in the past but I have struggled to get hold of them in the last 18 months.

    If all else fails, could you ask your GP to refer you elsewhere?

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    • Posted

      thank you for your reply!

      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 

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  • 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.  


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  • Posted

    I am so sorry to hear of your problems.  Each hospital seems to be total different.  I have always had good service, so to speak, from my Consultant but I must admit that the nurse that  I am supposed to contact is not very good.  In 5 years since my diagnosis I have had cause to phone her only twice.  Once I left a message to ask her to contact me, which she never did and I solved the problem on my own, the 2nd time she did return my call but several days later, which was a bit pointless.  Thank goodness that is the only times I have needed to speak to her. I am very lucky that I am managing my illness myself and I only see my consultant once a year, although this year an appointment has yet to be made and when I tried a month ago to get  the follow up appointment made I was told to ring back in 3 months time, so perhaps I am going to have the same problem.  However, my brother, who has the same illness but is under a different hospital cannot praise his team from Consultant to Nurse enough.  So it just goes to show.  Anyway, I do hope you get yourself sorted soon and I wish you well. 
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    • Posted

      Wow that really is 2 ends of the spectrum! I'm sorry to hear that both you and your brother have crohns. It's not a nice thing to deal with.

      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.


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  • Posted

    I changed hospitals 2 years ago and couldn't fault my surgeon or the in patient care at my new one. My old hospital was scarily bad, I actually was concerned for my health being in there and I'm not someone who scares easily.

    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.

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    • Posted

      If I remember rightly, we are both West Country?

      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?


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  • Posted

    I'm also from the West Country, you may want to look at this: MORE IBD NURSES - BETTER CARE' CAMPAIGN

    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.

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    • Posted

      that is not good, I take it you weren't given notice that the service was going?

      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.


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  • Posted

    I am also from the west country.i was diagnosed with suspected crohns last November after 2 years of tests. I was started on steroids and aza which I had horrible side effects from so was told to just take steroids and they would review my medication on my follow up 2 weeks after finishing the steroids. That should of been end of February. My appointment was cancelled 5 times over 5 weeks. I was in really bad pain so phone consultants secretary and demanded an appointment. She gave me a emergency appointment a week later but the big before the appointment I collapsed due to exhaustion due to pain according to the consultant. They have also confirmed i have definetley got crohns now. Also because I had gone 6 weeks with no medication they said I had to start course again so here I am on steroids again and mercaptopurine this time which is making me extremely tired. I have now been given ibd nurse number and have tried phoning her due to the side effects and all she has said is to go to see my gp. So now have an appointment with gp tomorrow but not sure what he can do as he has told me before he knows nothing about crohns and it's pointless me seeing him. Don't know what to do for the best as I am still in pain even though im on the medication now 😢
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    • Posted

      Ahhh bella, that's really awful for you.

      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.


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    • Posted

      Gp has said to me that the ibd nurses are to busy and that I need to give meds more time. He has confirmed my iron is low and has prescribed me tablets for this so am hoping these will help with my tiredness. Besides that he has told me to see him again in a month and a month after that I have a consultants appointment as long as they don't cancel it again. I have been given 2 more weeks off work as well. Just seems like they are fobbing me off just to bide some more time with me. Gp hasn't made situation any better for me and not really much help. Only thing I can do is go along and see him again in a month. 😢
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    • Posted

      Too busy?????? For what? Doing their job??

      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

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