I've had a million and one tests in past year for ra. Dr is convinced that's what I've got so at beginning of year referred for specialist. Today was (well should have been) my saving grace app (Dr won't prescribe more than codydramol without specialist say so) but I turn up only to be told that the Dr and actual clinic stopped coming to my area over a month that ago (literally could have cried) so they rang his secretary to find out what was going on. The Dr has been off sick for a while and won't be back anytime soon (fair enough) they aren't even thinking of sending out new apps for at least 11 months so they suggested to go back to gp and start all over again but refer to different hospital and as you all know these apps are like gold dust! I can't take another year (at least) of the pain and total exhaustion. I have a lot going on at home ( 3 kids under 5 one special needs teen and a disabled husband who is having surgery tomorrow so care will have to up a level Wednesday onwards for at least 3 months)
Any advise on what to do? Oh and I obviously wasn't told my app had been cancelled in the first place.
Thanks in advance
Written by
Free_Spirit
To view profiles and participate in discussions please or .
Appalling treatment. You must go back to your GP and demand a new referral to another rheumatologist urgently as if it is RA it needs treating asap. He could also give you some steroids to help you until the appointment.
I would find your local NHS complaints advocacy service and start the complaint process. Those pain in the butt patients get sorted much quicker as people don't want to have to keep dealing with them. Sad but true
Absolutely agree. However painful, tidious, and time consuming it is, STAY ON THEIR CASE! And have plenty cups of tea + watch funny tv programs in between to keep your smile going.
Also ask to be referred to the pain clinic as rheumatologist couldn't give me strong enough pain killers , they have been a god send for helping manage the pain for me .
It’s probably going to take a bit of emotional energy but you may need to be demanding or if you do what I did and wait you could end up with irreversible damage. I would start ringing and writing and make complaints. Health Board, Rheumatology department, Complaints department, MP. Ring and ask about cancellations and ring the rheum secretary. The alternative is do nothing or and I hate the thought pay private to get the diagnosis confirmed so you can start proper meds, the sooner you get meds the better
I don't know I suppose it depends on where you are. Your GP should make it clear that the appointment is urgent. You could always get referred for a private appointment which would be almost immediate, but of course there is a cost. I did this initially then when I was diagnosed I went straight to the NHS.
Hiya Goodie86 & welcome. I'm sorry for the disgraceful way you've been treated so far. The hospital really should have reappointed your appointment, my Rheumy went on long-term leave & the other Rheumy's took her appointments so there should be a way round this. Anyway, I'd go back to your GP, inform him of your situation if he's unaware, home life position, your husband having an op, SN teen etc & request an urgent appointment at another hospital. Remind him that the NICE guidance for initial referral is as set out in this link cks.nice.org.uk/rheumatoid-...
To be waiting for to see a Rheumy to be diagnosed 9 months in the first instance is just not on, he should also have been informed about the long-term leave situation when he referred you & another hospital suggested if the other Rheumy's can't take up the slack. If it's not offered request an NSAID & appropriate pain relief.
I'm so cross for you but you need to start getting cross too, in the nicest possible way. Your GP needs to do some searching on your behalf, I'm not sure involving PALS will be helpful as you're needing results now. If you can afford it a private appointment is another solution but you'll need to ensure the Rheumy selected can transfer you to his NHS clinic once you're diagnosed.
He had no idea. My youngest had an app with the same Dr so I mentioned it to him and he was utterly disgusted and is complaining etc.
Im trying to make an app to speak to him but as usual the damn phone line is always engaged. ATM im on codydramol and tbh they're not doing much to help. It's so annoying as the pain is in back hips knees ankles and wrists mainly- makes it so hard to just badger through it. It's making me so agittated (sorry can't spell that word even auto correct is like 'ive got nothing man your on your own here') and argumentative. Don't even start me on the fatigue and lack of motivation. Urgh such great fun fighting to be able to play with my kids properly in 2017
I think you're entitled to rant! But bear mind, as is often said here, it's the squeaky wheel that gets the oil. Saying nothing gets nothing so badger in a polite but forceful manner.
Thank you for advice ref nice guidelines I have looked at them and should have been two week referral in mid august. My appointment is early November. Left message with gp demanding two week referral hopefully it helps. X
Unfortunately food-lover Rheumy departments are notoriously understaffed & so overworked maybe 2 weeks isn't feasible but you can push either your GP or directly via the Rheumy's secretary for an earlier appointment than the 2 months you're at now notwithstanding the appointment you should have from August.
Thank you we have been looking at private but it would cost a fortune. I have left a message at drs should hear tomorrow. We have already spent a lot with aids it should at least be diagnosed so other help could be sought if needed. Your help to a speedy result greatly appreciated. X
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Help Please; advise req'd
New treatment plans advise needed please
Hydroxychloroquine
