I so understand, Nicole. Navigating the NHS is exhausting all on its own, irrespective of how crappy you feel because you have PsA. The whole thing can be just so overwhelming, even though you’ve got such a positive outlook. I’d be really happy to chat it all through with you if that helped. Although Sybil is far, far more experienced than me in all this.
And Sybil is also right, CCG cash is short supply. I got lucky and transferred my treatment out of Kent to what I consder to be a centre of excellence within the NHS for PsA before everyone decided cash etc was in short supply.
However all rheumatologists have to negotiate the same NICE funding issues, irrespective of how specialised they are in one disease or another or how they’re rated by their peers or where they may be based in NHS England (as against Scotland or Wales). What’s bothering me is the method your rheumatologist appears to think is appropriate. Ethically that raises big issues for me.
As an aside Bath apologised to me (unasked) for making me try mxt again given it so doesn’t like me. That was so refreshing as at the time, I was finding the treatment paths I was being told to follow, something akin to a horrid form of unnecessary torture that so didn’t seem right. And Bath agreed wholeheartedly. That felt so much better emotionally, if nothing else, I can tell you.
I was lucky me and sulfasalazine got along so well. But I whinged on the phone after three months starting it that it wasn’t doing enough in my view and was told then at my next appintment (about 3 weeks away), that they would consider biologics. However in the meantime I was to up the sulfalsalazine to 6 per day. That worked like a magic spell, So my point is, my treatment wasn’t left hanging in the method your rheumatologist seems to think is appropriate.
I also didn’t exhibit much that could be seen in either blood tests etc or swollen joints. But the rheumatologist could feel the inflammation in the joints anyway. Properly trained hands I’m guessing. So she seemed to satisfy herself on ‘swollen/tender’ joint issue anyway. And I had photos to show her of what I could be like which are thankfully quite gross.
But knowingly leaving you for 8 weeks to most likely flare badly so doesn’t seem right. Either the mxt helped or it didn’t and surely he doesn’t have to have you prove your disease to him yet again, or indeed prove the extent of it? After all he’s given the diagnosis, he’s treated you, that treatment isn’t doing enough, it seems that’s clear, so obviously needs to be changed, so why make you suffer for a further 8 weeks? NICE is tough on its requirements but even it doesn’t require patients to reprove their disease in this way. What were you like before mxt was prescribed? Obviously you required it then?
Do you see my point? I hope so. Unlike Katie @Katie909 above you’re not preparing yourself for a clinical trial, you’re just needing different meds. And whatever the hurdles from NICE, as Sybil says, he needs to be employing his ‘wriggle room’ potentially more intelligently.
However it could be I’m just not experienced enough yet since my treatment is doing its stuff for now. But I’d be raising hell on water, if I was told to effectively allow this disease to blow up again before I got the next tranche of meds. Why risk the further damage it does? Any damage it does, rarely can be undone as we all know so well.
Sorry I know you’re exhausted presently and me ranting on is probably not hugely helpful, but this truly makes me see red. Bug hugs. x
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