I don't know if anyone else has a problem with their gp. On my last rheumatology letter (had to ask my doctor for a copy as I wasn't sent one). On there it said I had blood and leucocytes in my urine. I rang rheumatology and they said my gp is supposed to follow it up, so when I eventually got an appointment I mentioned this to her and she said it wasn't her responsibility it is the hospitals, is she right. She did give me a form to have it checked out but only because I pointed it out to her.

Also on my next blood test form it has random urine ticked, so do I take a specimen? there is no separate form, I did ask gp but she didn't know (doesn't know a lot).

I'm sure someone on here will know.



16 Replies

  • This is shocking! Of course, this is the GP's responsibility. You need regular blood and urine tests, monitoring your kidneys.

    I am not at my PC, so this is just a quick response!

    I will try to gather some information for you later.

    With good wishes,


  • Thanks

  • Try a different GP at your practice or a different practice altogether? Groan.

  • I think I will have to change, but it seems none of the surgeries in my area are any good.

    Thanks Leesy

  • Leesy there's one other way and if you are stuck in an area where all surgeries are lacking ( been there got t-shirt) then you could possibly explore a 'private consult' with a GP of your choice? Other than that, it's pack up your troubles in your old kit bag and move, like I did lol

  • Good to ask for your letters at all times. I have had this problem. Nag your GP PRACTICE - I had to go back twice. All my Hospital Consultants discharged me back to the GP - who didn't follow up - I have to go in and remind them what I need. I have DLE and Sjogren's. I am going to change my GP. after over a year of struggling and no one taking responsibility for my future care. Good luck

  • I am going to ask the consultant next time to send a copy to me and explain that the doctor will not follow up unless I ask. I did ask my GP to refer me to a specialist in London but the say they can't, I am trying to get referred by my rheumatologist but they are away at the moment. Just wish I had a doctor like the ones on GPs behind closed doors :)

    Thanks Leesy

  • You are entitled, under the NHS, to ask for an immediate referral to see (and I would recommend) Dr David D'Cruz, Consultant and Director at St Thomas' Hospital Lupus Clinic, London. If you live a long way away, you can even stay over night at the Simon hotel, under the NHS, which can be arranged when you get an appointment.

    St Thomas are obligated to see you within a period of time. There is still a long waiting list for follow up appointment, but this is the best place, IMHO.

    Changing a GP is a pain, but you cannot be treated poorly. All the GP has to do is to arrange blood and urine tests and then review the results and contact your rheumatologist. All rheumatologists are NOT lupus specialists, which is why St Thomas' is the best referral.

    With good wishes,


  • Thanks for the information, I have emailed rheumatology again, asking to be referred and also asking for some advice regarding the pleural effusion I have as I am still waiting for a CT scan and I am supposed to be flying to Italy the end of the month and I have read that you shouldn't fly if you have this condition, it's just one thing after another.

    Just wondered if you know what the random urine meant on my next blood test form, do I have to provide a sample at the hospital? I should have mentioned that on my email to the rheumatologist.

    Thanks again for your help.


  • IF the pleural effusion is the result of lupus - and depending on its severity ie how much fluid and whether this is severely affecting your breathing - this can be dealt with via medication. Your GP should be competent to treat this condition. If it is not from SLE, its causes must be determined. Pleural effusion is not uncommon in lupus; I have had this many times.

    Pleuritis, also known as pleurisy, is characterized by inflammation of the pleura, the two-layered membrane surrounding the lungs. If fluid forms and escapes the membrane, the condition is referred to as pleural effusion. Since inflammation of the pleura puts pressure on the lungs, people with pleuritis often experience pain when taking deep breaths. A pleural effusion is detectable on an x-ray, and pleurisy or a pleural effusion can be treated with NSAIDs or steroid medications. Antimalarials like Plaquenil may also be effective in preventing or fending off the condition.

    I would not think it sensible to fly until this has gone. You may need to get a doctor's letter to say whether you can fly or not. How long have you been waiting for a CT scan? I would have thought this should have been done pretty quickly, although it can be seen on an x-ray, the CT will give a better "view" of your lungs, which is a good idea.

    The majority of SLE-related pleural effusions are not life threatening and respond favourably to treatment with non-steroidal anti-inflammatory drugs, for mild or asymptomatic effusions, and/or oral corticosteroids at a dose of 20 to 40 mg daily, for moderate to severe effusions.

    IMHO, you should have your urine and blood tests results BEFORE you see your rheumatologist else s/he will not have the latest results and a waste of an appointment. All you have to do is to see your GP. In many GP surgeries, blood can be taken there; and you provide a sample (mid-stream) of your urine. They send it to the lab/hospital and you get the results via your GP surgery, however long that takes eg 10 days etc. Actually, they don't really take 10 days, but you will be one of thousands etc etc. Your GP can even order an "urgent" order, but I don't think that would be necessary. Just make sure you leave sufficient time to have those results for your rheumatologist.

    The "random urine" test just means you give a sample at any time of the day. Sometimes, you need to have "fasted" for blood tests etc. Your urine will be tested for all sorts of things such as diabetes, protein, blood etc

    I hope the above is helpful.

    Please remember, I am not a medical doctor and you should always consult your GP and rheumatologist. No one can "diagnose" you other than your own physician. The information I give is always based on up to date medical information from reliable sources either in the UK, the US or elsewhere. Here are two sources:

    (NHS Choices is a general explanation and does NOT include lupus related pleurisy.)

    With good wishes,


  • I can see me doing this also so thank you Ros..

  • A pleasure to help.

  • You have more than your share and you don't need lazy minded over paid under Performing GPs to muddy the waters - it's your health they are playing with so you go!

  • I don't believe this to be true! We are entitled to choose where we are treated. After pushing I got an appointment with the only sympathetic dermatologist I saw over a year ago. Try again and get to St Thomas's Lupus Clinic which is actually at Barts now. Look it up. Awful the way we are treated ( or not really). Good luck - do keep me posted. Cas

  • Thank you, I have emailed the rheumatology department again, and will have to chase them up if I don't get a reply.

    I am just grateful to all the people on these forums, as you find out more on here than anywhere else.


  • Please let us know how you get on!

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