What Are Your Opinions Of The Louise Coote Lupus Unit Since It Moved To Guys Under Rheumatology? (This is for UK Members only)

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  • Thanks for doing this, I don't go to that one any more, I go elsewhere in the hospital, so I can't comment personally on my own case, other than when I did used to go there, before it changed. I found it great before the move. I can now only go by the dissatisfaction, and disappointed feedback we get on here, let alone the endless private messages we receive from distressed patients! MaryF

  • Hence this poll! If we get the sort of result I think we will, I intend making sure it goes to the appropriate place!

  • We can hand deliver it together! MaryF

  • It was so bad, waited over 3 hrs x 2 visits. As I travel from outside London, it made it a very long day.

    Docters were embaressed - in the end moved me to a clinic back at St Thomas's.

    Now I have no issues.

  • I am new to the clinic so can't compare to prev service. However from what I have read on here and experienced at the guys clinic it is very much a lottery we attitude and treatment.

    I have repeatedly tested high on all 3 tests, fortunately no strokes etc so my consultant says I only have antiobodies and not the syndrome therefore my symptoms are unrelated. Only treatment aspirin

    Not due to be seen now for 12 months.

  • Confused with your answer - if you have symptoms then you have the syndrome! The only way you would not have it would be is if you were symptom free. Is aspirin controlling them? If not I'd hazard a guess that again things are not as they should be.

  • Well that's what I had understood from leaflet I was given at local hospital but consultant at guys is adamant that I can only have syndrome if I have had stroke, clot, miscarriage up until that point only antibodies so symptoms must be caused by something or just normal as he said at one point!

    had a really bad flare up end of last year - extreme fatigue, joint pain, brain fog etc etc but wondered if this had been triggered by the hip replacement surgery I had earlier in the year. Symptoms have lessened over last few months although never totally go so maybe the aspirin is just about controlling things.

  • I'm really sorry you have been given this information by a Consultant at Guys of all places. It's ludicrous that they are expecting you to have a clot before they accept you have the syndrome! I'm also concerned you were given this advice and then had a hip replacement. I'm assuming they put you on Anticoagulation for awhile after that - did you notice if your APS symptoms improved by any chance? They seem to be churning out some strange individual advice instead of a consistent message which seems to be down to the beliefs and views of individual Dr's. This will be one of the subjects that we will raise if we find that enough people are having issues.

    We have advised other patients to complain and demand new appointments with other Consultants whose views have overturned previous advice and been more mainstream. If you are worried and are continuing to have symptoms, don't wait, ask your GP to get you an urgent appointment or write to PALS and demand your seen by one of the more senior Consultants. If you would be willing to PM me with the name of the person you saw that would be kind so we have it for our records. Thanks

  • Hi APSnotfab

    So sorry to barge in here

    I too test very high triple positive with symptoms but no confirmed clots and only 2 miscarriages. I was told by guys that either a clot or another miscarriage would confirm everything! Was told that aspirin is my treatment but heparin for long haul flights.

    I believe I had a mini clot back in July, d dimer was elevated but they couldn't find a clot in leg, next day I believe I had a Tia but was on holiday in Scotland and saw a GP who said no, but no further testing was done even though I showed a pic of the side of my face dropped.

    My GP was concerned spoke to Louise coote clinic and stated his concerns but again they said no, nothing's confirmed! Because they couldn't find a clot. I am so angry and worried.

    I am constantly dizzy and have headaches among other stuff.

    I have an apt on 27th and I am going to try and stand my ground but I have no one to come with me this time, so hope I can convince them for a heparin trial at least 😀

  • I've been discharged as I was told that I no longer have aps, so I've stopped my meds and all the symptoms have come back. I was even told my symptoms weren't as a result of aps even though I was previously.

  • Hi APSnotfab, You may already know that I am the lead assessor for LUPUS UK Centres of Excellence, which includes the Louise Coote Lupus Unit, now at Guys. There are issues which need following up and It will be much more effective if we can work together on this. I will be grateful if you will contact me (e-mail will be best) regarding your poll. Look forward to hearing from you.

  • I will email you :)

  • I hope all this feedback helps for things to change for do there to be consistent approach to help help all of us feel less scared, worried, anxious among a few of the feelings.

  • I was only seen once at louise coote, was then transferred to Beverley hunt on haematology at St Thomas's and very happy with treatment there

  • I shall add my own comment now given I went last week. I waited 4 hours to be seen by my consultant who I won't name because we don't name and shame on here. However having been told there was only 2 people before me I sat and watched far more going in to be seen by him before me! After two and a half hours I had to go and say something because my husband was in hospital, I had food shopping to do and numerous other things besides the fact of two dogs who would need letting out and whose red lights would be on!!

    The next minute I was told they were arranging for me to be seen by another consultant to which I responded by saying I had not waited almost 3 hours and had the appointment changed 3 times only to see someone else!! With that I was told to go and get my bloods done first. While waiting the consultant came over to apologise and explain that he had to also see other consultants patients and discuss their patients with them. He said he would see me after he'd seen another patient to which I responded by asking why he could not see me first given my appointment should have been at 11.00am!! I was told NO get my bloods done first! So I waited in line for that and then saw him, then had to go back to see the specialty nurse. I eventually got out at 3pm! It took another 1.5 hours to get out of London!

    Personally I think it's totally unacceptable that Consultants are seeing other Consultants in the middle of a clinic, which can mean that other patients get pushed in ahead of patients that are booked on the day. By the time I came out of his room it would have meant anyone booked after me for a 11.15 appointment would also have waited 3 hours. Consultants should see the patients that are booked for them BEFORE they see any consultants or agree to see any of their patients. In my case it was clear that people were arriving a long time after me and were being seen by him and leaving while I was still sitting there. This is not fair. Either that or he was picking who he wanted to see rather than sticking to the patient timing and who arrived first.

    I am now going to be asking to be referred elsewhere because I think it's getting personal! I shall also be sending the results of this poll to the hospital as a complaint, there is and was no reason that I could see for me to be treated as I was on that day. I left being given no explanation about further appointments either so don't even know if I'm discharged or not!