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Crohn's Disease
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Posted 11/15/2010 9:07 PM (GMT 0)
I just want to ask you something. At hospital appointments, do you usually see the same doctor every time or do you get presented with a new face regularly? For me, it's the latter and I hate it. Even if it's unrealistic to expect anything else on the NHS, I just don't think I am prepared to face being shunted from doctor to doctor any more.
Posted 11/15/2010 9:47 PM (GMT 0)
I usually see a few specialists, some are the registrars from the gastroenterologists department. Apparently they all have a meeting together once a week to discuss all the cases seen. I know it can be annoying though, because if you see another face, it means explaining everything over and over as well!!
I am just disgusted with the waits between appointments and any tests done too! I had a bowel follow through and have to wait 3 months before seeing the specialist after it. The only way I know that my crohns is active is I had a letter telling me as a result of the small bowel follow through they will be putting on more medication. Then about 3 weeks later get a phone call from x-ray department to say I need an x-ray, which at the time didnt know why, then I spoke to the gastro nurse specialist and she told me it was because of going on the Humira injections, and she would send blood forms out as well, which I did receive the following the day, which wasnt too bad, although two lots of blood forms, one arrived in the afternoon, so went the next morning for the blood tests, get home, an hour later , yet more blood forms, so had to go back to pathology again in the same day! I don't know why they didnt put it all in the post together!!
And if I have any problems, trying to phone some one is an impossibility!!!! The doctors surgery you can wait 3 days for a call back!! And the gastro nurse might get back to you the next day!
Fair enough if it was an extreme emergency I would go to A & E, but thats still not the point if there is just a concern and not in total agony, considering they want to cut down the amount of people that go to A & E, you can see why the figures are so high!!
Posted 11/16/2010 6:46 PM (GMT 0)
Thanks.

Yes, all that sounds pretty typical :/ The long waiting times, the being unable to contact anybody at the hospital, the right hand not knowing what the left hand is doing, etc. But to be honest, the single thing which annoys me the most is never getting to see the same person, the feeling that nobody cares unless you're so ill your life is in danger.

The reason I asked is because I'm going to write a letter to my GP. (Not going to mention anybody from here; in fact I won't mention HW at all.) There doesn't seem much point in whinging about never seeing the same doctor if that applies to all Crohn's patients. As it is, I don't have the first clue about it.
Posted 11/16/2010 7:12 PM (GMT 0)
Hey NCoT :)

Think you know answer to this one in son's case. He always sees the same consultant and same dietician. This consultant also did his colonoscopy etc(who also made time to discuss results immediately after)Any queries/questions I phone IBD nurse and have always managed to get hold of him.I guess we got extremely lucky!!

GP's surgery-that is another matter lol although must add that the pharmacists there are fab :)

Posted 11/16/2010 8:47 PM (GMT 0)
Nice cup of tea

I feel your frustration, the Hs can be a nightmare at times, I find it helps to be as pushy as possible in the niceist way.

I think I must be lucky. I have only ever seen the same gasterentologist in 5 years.  Sometime she has registrars, I then have a word with the nurse and ask for continuity of service and say i dont mind how long I wait so long as I see the doctor I want to see.  She calls me in by my first name and I have trust and faith in her.  I am lucky that I can ring her secretary if I am desperate and will get in to see her usually with 2 weeks or so, if this isnt possible I get an appointment with the IBD nurse.

Having said all that I often have to wait for tests, but never longer than say 5 weeks.  And I will already have a re appointment with my gasterentologist.  Often these get cancelled and re arranged, but sometime she writes a note on the appointment request that the appointment must not be moved, and then it isnt.  She got me an appointment to see a surgeon within a month, but I am now on a waiting list for surgery.

If I was you I would get one of the secretarys numbers and ring them if you need help.  I am quite proactive in pestering the hospital when I am waiting for tests etc.  I dont know if it helps but it makes me feel like I am doing something.

My partner has crohns and is more laid  back about it, he sees a different gasterentologist, he doesnt chase things up and has long gaps between his appointments.  He was in hospital in May and was prescribed new drugs in July but doesnt have a follow up until December. When I was first given the same drug my follow up was in 6 weeks.

Posted 11/16/2010 9:02 PM (GMT 0)
Hi, In the beginning I kept seeing different doc's and having to explain what had been going on with me  but, now I always say to the nurses that I request to see the surgeon/ GI who has been dealing with me over the last few years and since then I always do. Just ask the nurse to write at the top of the form that you request to see ... so when the doc's go to the pile of files they will leave yours for your doc Bev x 
Posted 11/16/2010 9:20 PM (GMT 0)
btw, NCOT, if you're not already doing this, now's a good time to start: the occasional token of appreciation, like a small egg at Easter or a Christmas card, can do wonders towards building a good working relationship with your doctor and his / her staff. And it might help burst the bubble of anonymity that you seem to be living in, and get them to start seeing and remembering you as a real person.
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