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My partner has had Crohn's Disease for 3 years now (5 years but 2 years to diagnose).
I can honestly say that one of the worst parts about his disease is the poor out-treatment care he receives.
He has an ibd nurse who he is told to contact when he thinks he's having a flare up. However it often takes 2 weeks of continuous phoning and emails (I'm talking a LOT of emails and voicemails) before she actually bothers to reply. When she does, her tone is like he is making it up with sentences like
'Could just be a bug. Please go to GP' even though he has always accurately predicted when he's having a flare up in the past and is the least likely to over exaggerate symptoms.
He is only able to see the consultant twice a year and this never coincides with a flare up.
He has currently been off work and extremely ill for two weeks now. Yesterday was the first time the ibd nurse got in contact and there's no talk of the prednisolone he is usually prescribed (usually after a long battle of persuasion).
We have written an official complaint to the NHS Trust his hospital falls under the last time he had a flare up but this didn't get us anywhere.
What I want to know is whether you think this is pretty normal and I just have too high standards of the concept of 'care' or whether this does sound unusual.
We both work in public sector and know exactly what it feels like to be overstretched but his care just feels utterly neglectful and actually very damaging to his health.
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