Sticky Blood-Hughes Syndrome Support
8,083 members8,322 posts

what the heck is going on in Wales?

Saw consultant today (who has been very helpful) and he is refering me to the London Lupus Centre, as he seems to think that APS is the most likely explanation for the unexplained symptoms.

But he is still looking at scleroderma on account of raynaud's, GERD, swollen fingers etc. What is unbelievable is that he requested an anti-polymerase III test over a month ago along with other tests. And nothing came back for anti-polymerase III. Turns out that they dont do these tests in Wales! Maybe the Welsh NHS thinks that nobody in wales get this (the second most common scleroderma anti-body). Maybe they think it doesnt make it over the Seven Bridge, perhaps isnt prepared to pay the toll.

If that is not bad enough, also turns out u cant get a high magnification capiloscopy in Wales (which is used to detect early scleroderma). What the heck is going on in Wales!?

Anyway, thanks for kind help and support that people on this forum have given. Will report back on wht happens at the London Lupus Centre.

8 Replies
oldestnewest

Good Luck with that appointment!

1 like
Reply

Thanks

Reply

I know its awful waiting for answers. You just want something doing don't you. Hope you get more help at London.I have been and found answer to my problem .Very thorough

1 like
Reply

Thanks Fra22-57. The consultant did say to me yesterday that he knew it had been a long journey but I was nearing the end. Though hope he didnt mean THE end!

1 like
Reply

Afraid NHS in Wales has been --expletive deleted-- awful for years, pretty sure the problems go back to before devolution but devolution sure as heck hasn't done anything to fix it. Oh, you get free prescriptions, if you can stay alive long enough to collect them. On the other hand people in North Wales are now told to go hundreds of miles to Cardiff to see specialists, when there are multiple English hospitals (as good or better) far closer.

Two of my relatives have had strokes in Wales, one was left undiagnosed (not scanned, sent home with antibiotics) to have a much larger stroke weeks later, one was basically left without treatment (or food, or water) for days until it was clear she was refusing to die and they grudgingly started to do something that might be called care.

Lovely place Wales - for the healthy - but if I go there again my family will have standing instructions that if I get ill put me in the car and drive back over the border, it is that bad.

2 likes
Reply

Not the first time we have heard this! MaryF

Reply

I wish I could disagree.

Reply

Let us know how it goes, they will be thorough with you. MaryF

Reply

You may also like...