Lupus anticoagulant : Hi. I posted a few weeks ago... - LUPUS UK

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Lupus anticoagulant

Suecon profile image
11 Replies

Hi. I posted a few weeks ago when I tested positive for lupus anticoagulant. My GP referred me to rheumatology in Broadgreen, Liverpool. I've just received a letter from them saying that they believe their department is not the right place for me and have cancelled the appointment. Has anyone had this happen to them or can throw any light on this?

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Suecon profile image
Suecon
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11 Replies

Are you actually based IN Liverpool?

Suecon profile image
Suecon in reply to

Yes

whisperit profile image
whisperit

Hello Suecon

I haven't been in this specific situation, but am aware that sometimes secondary care departments might write back to a referrer in primary care to say that they feel the referral is inappropriate. It might be that the referral does not meet the acceptance threshold, or it might have been direccted tot eh wrong specialty. In any case, they should explain why, and suggest an alternative course of action. It would be most odd if they have sent you a letter saying you've been inappropriately referred without letting your GP (i.e. the referrer) know why.

Maybe speaking with her/him is the next step? x

Suecon profile image
Suecon in reply towhisperit

Thanx for replying. The letter does state that they've written to my GP, and I will certainly make an app to see him. The letter states that they will not discuss it with me or explain their reasons to me. I too have heard of it happening when waiting lists are long. It seems to be almost a dismissal of people they decide don't qualify. I'm very surprised it's happened in the light if my recent lupus anticoagulant results, though

eekt profile image
eekt

Hi Suecon, could it be your GP hasn't made it clear in his referral that he/she would like you seen about connective tissue disease/lupus?

If GP only put 'positive for lupus anticoagulant' on the referral, Rheumatology might have thought 'that's one for haematology'?? xxx

Suecon profile image
Suecon in reply toeekt

Hi eekt. It is possible, of course, but surely only a trawl through notes would be warranted before rejecting patients

eekt profile image
eekt in reply toSuecon

As whisperit hinted at (and as I learnt from wise Whisperit posts, worth following! 🦉), referrals go through a triage system - and some Trusts in England outsource this work to a private 'Referral Management Service' - so it is entirely possible that a 16-year-old with 'training' has looked up lupus anticoagulant on the system and it's said 'haemotology', and the company's earned a tenner for rejecting it. 😫

However, maybe even a phone call with a message for your GP will sort it out! 😁

Let us know what happens! xxx

Suecon profile image
Suecon in reply toeekt

Well, that's something I'd not heard about before but makes sense considering the profusion of outsourcing going on now. Perhaps my GP will know whether this is the case it not. You've given me some interesting points to raise, thank you

eekt profile image
eekt in reply toSuecon

'Liverpool CCG have a Choice Team, and admin team who offer choice and book

appointments, they are not a referral management team and they do not triage

referrals.'...so possibly an admin error.

Liverpool had no RMS @ April 2017: liverpoolccg.nhs.uk/media/2...

🤞 xxx

sarahsch profile image
sarahsch

Hi Suecon,

You are aware that Lupus anticoagulant isn't an antibody for Lupus but for a blood clotting condition called antiphospholipid syndrome (also called Hughes syndrome I think). The name causes confusion, but I would have thought GP should know this.

That's not to say you don't have SLE as antiphospholipid syndrome is AI and can be secondary to SLE.

I'd go back to GP for an explanation (& and apology - do post if you get one of these!!!)

Take care,

Sarah

Suecon profile image
Suecon in reply tosarahsch

Thank you. Yes, I am aware but I doubt my GP is. I will be making appointment to see him asap

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