Don't seem to have any quick access to healthcare prof!

[Jbo16]

Hi , feel stupid saying this but I struggle to see/ talk to anyone and when I do get rheumy appt he only wants to take bloods and that's it.

I am lucky that generally I am well, mild symptoms. The rheumy said he would see me annually but gave me a number I could call if I needed advice or an appointment. A few months ago I had a big flare up. It completely floored me so I phoned the number....it was a general booking line who said the nurse would call be back. Th following day I received a phone call. Started explaining my symptoms to be told she doesn't deal with lupus...i would need a.rheumy appointment...it would be sent in post. Letter came with appointment in2 months. So I tried calling my doctor...they couldn't see me either. I stupidly said it wasn't an emergency!

Went to rheumy appointment, explained all symptoms I had during flare up and he ttok bloods. Said he would write to me in 2 weeks. That is 2 months ago. My doctors have said they have no letter and I have no contact number.

What am I doing wrong?

[DJK99]

Hey jbo16 - why not call Lupus UK for advice on Monday - theyll really help you learn how to navigate the system. All the best x

[Jbo16 in reply to DJK99]

Thanks. Didn't realise that was possible. Will do they on Monday.

[Polly2Cats]

The hospital should also have a patient advice and liaison service (pals). Details will be on the website. They can liaise with constant for/with you. I’ve found a good short cut it phone the hospital switchboard or main number and ask to speak to your consultants secretary. You GP should be coordinating your care (I know I know that’s rare) but perhaps phoning the secretary at your surgery for advice and to ask them to chase might help. I found it hard to navigate and I work with GPs it’s mine field and saps so much energy. Best of luck

[DJK99 in reply to Polly2Cats]

Big up to that Polly!! Had forgotten about PALS...

[Jbo16 in reply to Polly2Cats]

Thanks for that. Never thought about ringing the Secretary or pals. I'll start with those tomorrow and also lupus uk helpline. Feel like I should know these things, but as you say everything is a minefield.

[alice_sportyauthor]

I would say, you are doing nothing wrong, my rheum is only really interested in what the blood tests tell him.

Remember you can phone that help line again, and again and AGAIN, like to tell them you were told there would be a letter, but you and your GP have not received one. (Everyone makes mistakes, but if you don’t tell them no one in the hospital system will know you haven’t received it).

Also if you don’t tell them you are still suffering they don’t know that either.

Also, get to know one of your GPS that you think is alright. If they know you a bit when you are relatively well, they will understand better when you are unwell.

I know that’s not easy, but if you have none urgent stuff from time to time, ask to see the same Dr even if it means waiting a little longer, so you get to know each other a bit.

My GP has recently retired, as have others I knew, so I’m in the process of doing that with the GP who currently receives my letters from the rheumy!