If you're not happy with hospital treatment...

[Panadbois]

what do you do?

DU has been in and out of hospital for over a year and a half, and the most recent diagnosis of stomach cancer has just been changed to Crohn's disease.

He was meant to have some treatment today, (beri something?) which meant swollowing a paste like substance which would allow doctors to investigate earlier. DM just phoned the hospital to be told that they we'ren't doing it today after all, because the doctor has forgotten to sign the prescription.

The list of complaint is huge by now, from mis diagnosis , to just not doing anything at all. DU has not been able to eat anything since before Christmas and has been on a drip.

So, I have looked throgh old post on MN looking for advice. I've given my DM a number for the local advocacy/ complaints people and she tells me that DU'n daughters has filled in forms to make a formal complaint (previously).

Trouble is my DM lives an hours drive from the hospital, and his daughters live more than 2 hrs away.

How do we go about transferring him to another hospital, in the next county? Is this allowed??

My DM is worried sick and they don't seem interested

I've a feeling Crohn's disease is something that is notoriously difficult to diagnose. Years back dm had a friend who went through the diagnosis for it, but she had half a dozen misdiagnosis first, which was apparently typical back then anyway.

What does DU stand for?

I haven't really got any advice, but hope things get better.

Was hoping tha DU means Darling Uncle

I'll have a look see what's what with Crohn's disease. Thanks for posting

Hello, I have Crohn's so really sympathise. It took about 18 months for a dx for me. The treatment was probably a barium meal, which is not very pleasant but does help diagnose.

The people you might want to speak to are the PALS service (kind of advocacy people), who might be able to mediate a conversation between you and the doctors involved.

Hope he gets the dx and treatment he needs, soon.

Thanks holo. DM won't contact local PALS ( live in Wales so similar support group over here) cos she doesn't want to interfere with what his daughters are doing. Thing is, because she lives closest, she's the one going to see him every other day, seeing him in pain and mostly being ignored by doctors. (and sent home untreated on occations)

He also has other health problems with his lungs and angina to boot

How are you now? Is it manageable?

Thanks. They diagnosed pancreasitus (?) then stomach cancer, now crohn's.

I'm not too bad thanks Panadbois, I've had Crohn's for about 18 years now, so I'm very used to it . I'm on some v. good medicine that is controlling my symptoms wonderfully. The only thing is, as time goes on (I'm 38 now) I am getting new problems - a while ago I was diagnosed with keratitis, which is an inflammatory eye condition, which is basically because of the Crohn's. I'm having some gynae problems at the moment and am waiting for a hospital appointment to find out whether that's Crohn's-related - you can get 'ovarian Crohn's Disease', so it might be that's what's causing me problems. I've also become aware that I'm likely to have an early menopause, and actually the meds that I take for Crohn's means that I can't have any more dc, so I'm not too bothered about an early menopause (I have 2 fab dc and no unfulfilled maternal longings, thankfully) - but I can really see that for other women my age, that could be pretty devastating.

So that's me, but of course your uncle's story will be completely different. Gentleness and a bit of a sense of humour go a long way in chronic illnesses like Crohn's. Has he joined NACC? They are v. good indeed. All the best to you, your family and him!

If your uncle wishes he could ask for a second opinion.

The thing about a prescription not being signed sounds slightly dubious to me. If an investigation was planned and that was the only thing standing in its way it isnt usually too hard to get a doctors signature in a hospital.

Thanks for posting holo and cats

He's had the bari meal thingy today, was able to keep that and a sandwich down. Because he feels more confident that they are on the right track, my DM also feels better. She's had a chat with the consultants' secretary today and feels that she's been listened to.

Cross fingers they wil be able to help now.