Just need to rant!!!!!!!!!
Went to hospital today for 5th tysbari infusion – i only have funding for 7 infusions in total and next month i re-appeal to the PCT for further (hopefully permanent) funding which i am obviously nervous about as since starting tysabri i have been the most well that i have been for about 5 years and dread the thought of having to stop and possibly reverting back downhill again!
The nurse on the medical day unit (not an ms specialist nurse) forgot to take the necessary tests before hooking me up to the drip (until i reminded her) and she then proceeded to lecture me about the fact that i wouldn’t be on 6 months funding as that is ridiculous (tried explaining the situation and she basically said i was wrong and questioned why the hell i was on tysabri if i didn’t qualify via the normal route – that if active lesions were not showing on my mri scan i didn’t need tysabri (wrong again as the mri scan is not an infallible test which i again tried to explain to her that clinically i qualified all but for the mri scan result!) – i didn’t exactly make the decision lightly to have tysabri – after researching and mri scanning and making the appeal over an 18 month period and my Consultant is the one who really wanted me to start the treatment.
she continued on this vein for quite some time which has left me feeling rattled and upset – i keep trying to rationalise by saying she is not an ms specialist, she does not now my case history etc etc but it has really got to me – tried to explain how i am feeling to hubby who just shrugs it off…not sure why its got to me quite so much….ok rant over!! 🙁
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