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08-24-2017, 04:42 PM   #1
Sophabulous
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Location: Cheshire, United Kingdom

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Arrrrgh!

So about 3 months ago I asked to be referred to a different hospital. The place I'm currently treated at has a myriad of staffing issues and quite frankly, it's got to the point where I'm not willing to gamble with waiting 6 months + if I'm lucky for an appointment anymore.

My GP was very understanding, and referred me to another local hospital just over an hour away which recently had a new gastroenterology unit put in. In the meantime I started to develop some new symptoms, by far the worst of which is a stabbing, crampy pain which doesn't subside.

I called the original hospital, and they told me I needed to start a biologic and sent out forms for blood work. They also said they would put me on an urgent recall for an appointment with my consultant. It took a month for this to come through, and even then it was still a 2 month wait.

I wasn't worried, because I was confident that at my appointment at the new hospital (next Thursday), they would agree and say I could have the same treatment there instead. That is until 2 days ago when I got home to a letter from them saying they had cancelled my appointment due to 'unforeseen circumstances,' with just over a week to go. I've been waiting weeks, why now?!

Not only that, it looks as though the consultant I was supposed to see there is the very same one who I first saw at my current hospital in 2015 who insisted there was nothing wrong with me! He refused to do all the tests my GP requested and only proceeded with one, which the result of was a misdiagnosis and waiting another 12 months to be taken seriously and re-tested. Guess what, the tests that diagnosed me correctly were the ones my GP had requested in the first place!! So I really don't want to see that man's smug little face again thank you very much.

I'm beyond gutted, I had been counting down the days. I called them as there was no mention of an alternative appointment, and they basically said they don't know when they can see me, but 'hopefully' October. Well that's what my current hospital say too, and then when said month rolls around and you call again you've been pushed back another 2 months. On and on it goes, until 6+ months have gone by and you're still nowhere near knowing what's going on.

I'm SO sick of this. I love the NHS and God knows I can't afford to pay for private treatment, so what can I do? This service isn't fit for purpose anymore due to government cuts and it's failing people and wasting money on every level. I've tried to get in touch with my GP but she's off this week, and the next available appointment is 3 weeks from now.

Honestly, I'm just so fed up of it all. I told my GP when I asked to be referred somewhere else that I was worried I was going to develop complications and end up in A&E before I would ever be seen through normal channels. It looks like that's all I can expect from anywhere! This has just really ground me down, to the point that I exploded at work yesterday after calling them. We've all been under a lot of pressure recently, the only reason I've been able to carry on is knowing I'll be feeling better on a biologic soon. Now the rug had been completely pulled from underneath me

Rant over, apologies for having a meltdown! Normal service will resume from tomorrow, I can't dwell but I can still be extremely p*ssed off!
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Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
08-24-2017, 04:56 PM   #2
ronroush7
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I am so sorry.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
08-25-2017, 06:01 PM   #3
Tuff
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Location: Ontario

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I'm sorry you're going through this. Our health care system is also going from bad to worse. I currently have no doctor, one retired and one moved out of town. I have to go to a walk in clinic when necessary, for now. Is no one covering for your doctor? There's always the ER if things get worse, and maybe they could speed up your appointment. On the plus side, without our health care system, I'd be dead already. Hang in there.
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Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
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Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
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