Peoples experience with IBD nurse teams

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

 

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?

Hi 

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

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. 

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.

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.

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 😢