Has anyone had to change consultants? (I’m in the UK) I got diagnosed with Crohn’s recently this year and I was given steroids and azathioprine and sent on my way with no information, no ibd nurse helpline and not even my MRI results sent to me via post confirming my diagnosis (no idea if I should of been to be honest) I’ve been told to get weekly blood tests for 8 weeks since starting azathioprine but was told this 5 weeks already into taking them so just been to get my bloods done and the lady doing them said my consultant hadn’t even put them on the system so I wasted my time driving half an hour to get them done to be told he hasn’t even bothered to add them on to my file so I walked round to the gastro department to be told to call the secretary who then told me she can pass on a message to my consultant but he’s very busy so wasn’t sure when he would add my blood tests to my file. (What the hell so I’ve now been on azathioprine for nearly 7 weeks with no blood tests) I just feel I’m not getting the right care ! Anyone had any trouble switching to another consultant on the NHS ? Thank you any input would be great!
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maceyukk
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You need to report your GI consultant. To do this you should contact PALS at the hospital, and they will give you all the appropriate information. If you ask them they should also advise you how to change consultants, if they don't contact your GP and they will advise you. I have done it, it feels like a slow slog through thick mud, but it will get done, you may even consider reporting your GI consultant to the GMC as he has failed on a "never" event (blood test with Azathioprine).
Your treatment has been very poor! I had a batch of tests before starting azathioprine and careful monitoring ever since. You should have the same, so PALS is the way to go. Good luck!
Thank you I have finally asked for an ibd nurse telephone number (I hadn’t been given it I had to ask I’m so new to this I didn’t even realise their was an ibd nurse helpline until recently!) they have called my straight back and have been brilliant
How frustrating for you. When first diagnosed, I was totally unprepared for the lack of communication between the hospital and my surgery. Almost like the hospital was slightly surprised by my interest in blood test results! You most certainly need a good relationship with a health care provider. Mine is my ibd nurse at the hospital. I think you should have a good talk to your GP about this first, tell them all your concerns and take their advice. Only as a very last step report your GI consultant or try to change consultants. I have a feeling that the medical profession will close ranks, and it could get uncomfortable for you. Good luck anyway.
Thank you I now know not to contact my consultant as it falls on deaf ears completely! I have contact with my ibd nurses now luckily and they have been really good so far! At least they call me back unlike my consultant ! 😕
Think you have been unlucky. It should nt be such a big deal though . Don't panic I was on them for best part of 20 years on and off they do help reducing any steroid dose provided your fine with them. I have had no issues on NHS in over 27 years with UC. Perhaps ask if there are any gastro nurses you can contact. As most consultants have a team. Good luck
Thank you! I was only concerned about azathioprine because I’ve had pancreatitis before and I know these tablets can cause this too so I raised my concerns and it fell on deaf ears ..... but hopefully I will just deal with the ibd nurses from now on as I finally have a number for them!
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