Going round in circles

Hello all, thank you for your replies, had a bad few days. Been to my GP today with information regarding my local specialist, he told me "no need see specialist as not had blood clot or episode? 18 months and current enlarged spleen etc not related". I rang and spoke to specialist secretary seemed really nice and caring but I must be referred by GP. I also asked for sick note for week as so tired but refused as said if I took painkillers would not stop me working. Any thoughts how I could ask GP to refer me? I took books recommend with notes but not interested.

9 Replies

  • I think you should change GP!! He does not understand and does not want to help you.

    I suppose you have a diagnose on a paper!? If you have a diagnose of Hughes Syndrome I think you have a right to get a Specialist who can help you to get the right treatment.

    Yesterday LEDLEGS wrote that you could get a referral by yourself. Hope others can help you further.

    Good Luck!


  • Hi, I agree totally with Kirsten, the fact that you have enlarged spleen (Who said it was unrelated?) and that you are in pain and feel so unwell should be enough to see a specialist. Did your GP even take notice of the notes you took with you?

    You shouldn't be made to feel worse by this, please change your GP. Hopefully you will see a specialist soon. Keep trying. x

  • Change GP without a doubt x

  • Hi Sue

    Where are you from?

    If you are in the UK you could self refer to one of Prof Hughes' team at The London Lupus Centre, London Bridge Hospital.


  • Dave

    Can you self refer under the NHS or does it have to be private


  • Hi you can't self refer under NHS, I have spoke to local specialist secretary gave brief background, she was really nice said would be appropriate to be seen but my own GP must give me code to book appointment.

  • Thanks SueH21, I didn't think you could self refer under the NHS and our PCT won't refer to London Bridge or St Thomas's, they have referred me to a local rheumatologist (who thankfully has a research interest in Hughes)

  • I would print notes off about APS that a blood clot or episode relating to that is not needed and show your GP.I have APS and have not had either

  • I would attend again and this time take your most trusted friend, relative, colleague or neighbour to help fight your case, failing that change GP. Sorry this is so difficult for you, I have been in your situation previously. MaryF

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