Email.

[donnabrain]

Has anyone else contacted the lupus unit at Guys and St Thomas?

How long should I give them to reply?

Will they reply?

[lupus-support1 Administrator]

Sadly, I can't comment. It as been my experience that this is difficult to reach someone who knows your clinical history.

If you get no response, may I suggest you see your GP to intervene if you are unwell & need help.

With good wishes,

Ros

[HollyHeski Administrator]

Everything is taking much longer than usual!!

Did you write or email and if so, did you address it to your specialist?

I wouldn't give them longer than 3-4 weeks before politely repeating and requesting acknowledgment?

[MaryF Administrator]

Hi, perhaps ring up and ask for the PA to somebody you know, in that team, and the redirect a copy of your email to them, that is what I would do. If no answer you will be directed to an answering service be ready to give your details in bullet points, hospital number, your date of birth and reference to the fact that you have sent an email, leave all phone numbers relevant, and I am sure somebody will call you back. MaryF

[donnabrain in reply to MaryF]

I tried that, but was only given the main email address.

I have marked it for the secretary to my previous consultant

[donnabrain]

Sorry, Mary, I,m a bit dim sometimes lol, after re reading your reply I understood.

I had previously rung reception and asked for her email address and they would only give me the general one.

I have just taken your advice and rung in asked for her by name, got an answer phone .essage, which Bingo! gave the direct email address that I required 😀

[donnabrain]

Wasn't expecting a reply so quickly, but got one this afternoon.

I emailed explaining the problems I have been having trying to get some blood into a tube.

I have been trying to collect a sample for a blood test that I ordered through superdrug to check my B12 levels.

After two attempts they sent a third, saying that would be the last try.

I was going to give Mary's tip of using a rubber band a go, but Superdrug contacted me asking if I had a blood disorder, so I explained and they asked was I not having treatment and I explained.

They said I should hang on to the third test until I get treated.

With no plan for me to be treated, I emailed the unit explaining what Superdrug have said.

They have replied stating that as my antibodies have been consistently negative since 2010 my blood is not really sticky.

I had two positive tests three months apart in end of 2006 and beginning of 2007 which led to my diagnosis, but they did alter in 2010, which is why I am now untreated and discharged.

They questioned my wanting to check my B12 as apparently that was normal in 2006!!

[Apspain]

Yes I emailed my consultants secretary and got a response following day.