There I am ticking along nicely about 8 months into my first Biologic Enbrel backed up with 400mg of Hydroxychloroquine daily. Getting my deliveries once a month and organised it finally with Health Care at Home that my delivery ties in with my days off from work abroad. Consultant pleased at last appointment says I am getting close to remission, next appointment in September. All in all quite standard.
On June 30th I received a letter from H C@Home saying my deliveries going forward would be every 8 weeks or twelve weeks and not to worry I need do nothing as they would contact me with news of my new delivery schedule.
Last week with two doses left in my fridge I thought I had better phone them.
Well they said my prescription hadn't been sent 'you are on Benepali right? '
'No' I said I'm on Enbrel but I have received this letter yada yada yada........
'Please phone back next week' they said.
So I take my last remaining injection on Wednesday last week and phone them again last Thursday.
' Here' I say a bit narked.
' I thought you were going to contact me about my new delivery schedule?'
I said ' If I am going onto Benepali then I expect at the very least a letter from the Hospital explaining as much'
The woman from Health Care at Home, says ' how do you know about Benepali? '
' Because last week someone mentioned it on the phone and I do my research I say'
The upshot of all this is that there has been a mix up between hospital and Health Care at home.
If I hadn't contacted them but just done what the letter said then I definitely wouldn't be getting any drugs at all.
The lady I spoke to on Thursday was going on holiday and was passing my problem to the Pharmacist apparently my notes said the prescription is in the post. Whether it's a prescription for Enbrel or Benepali who can possibly tell. No one phoned me back on Friday, I emailed them on Friday afternoon but the response was that it takes one business day to respond to queries ( big sigh)
Anyway, what I'm asking you kind folks is whether I should stick to my guns and refuse the Benepali (if that's what I'm going onto) as no one has told me I am being switched, no letter, no phone call, or just accept it as of course the NHS are going to go for the cheaper option.
Plus as I sit here on Sunday evening my fridge is empty of drugs and I'm due to inject on Wednesday and through no fault of my own or through no lack of trying it's looking like I shall be without my regular dose of Enbrel this week unless they can rush it to me. You would think they would understand that breaks in treatment are undesirable.
Me thinks Mandalou will be having a busy day on the phone tomorrow!