Discharged from Lupus unit !

Hi there I was diagnosed with APS three years ago by Professor Khamashta. I was put on daily Fragmin injections which really helped with my symptoms ! I went to my appointment last week and seen by a Dr Sangle who I haven't seen before because Professor Khamashta is on a years leave. Dr Sangle basically told me I don't have APS as I only had one positive lupus anti coagulant,one positive anticardiolipin test and a couple borderline. He basically laughed off professor Khamashtas diagnosis and told me I no longer need Fragmin injections or any other blood thinning therapy.He failed to take into consideration the two positive anticardiolipin ,one lupus anti coagulant tests and other related clotting blood tests I had done at Kings college hospital. Because I don't test positive everytime he is saying I don't have APS,whatever happened to Professor Hughes and Professor Khamashtas theory that some patients have irregular blood work and some are completely Seronegative ! I am left feeling really scared and wondering if anyone else has had the same experience ? Thank you x

22 Replies

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  • Unfortunately I have heard this happening, do make sure you contact PALS and also give feedback on NHS choices/or hospital feedback if private, in other words fight your corner, I know this is hard, but it is clearly not on. Make sure you inform this doctor that if anything should happen to you, you will be holding them directly responsible. MaryF

  • This is very alarming not least for you. I can't understand why Dr Sangle would undermine Prof. Khamashta's diagnosis. I saw Dr Sangle and he was lovely and very knowledgeable, he has even written a book with Prof. Hughes so this is puzzling, as he must be aware that bloods fluctuate or can be seronegative.

    Mary is right you have to question this after all if you come off your medication who is responsible if you have a clotting episode?

    Let's all hope it isn't part of a bigger agenda to Cull patients from the unit!

    Sorry you have this worry thinkin of you, let us know how you get on xx

  • It is part of a bigger agenda. I know through personal experience. They must take the matter further, and put an official complaint to the CEO. If no satisfaction there, then you take it to the ombudsman. I did, and St Thomas's was found to have failed me.

  • Sorry to hear that. I replied to a separate post to you. Do complain to the pals at Guys. This is happening too often.

    The important thing is your medication and keeping you safe.

    Do let us all know how you get on if you take things further.

  • Thank you everyone for your kind replies ! Im lucky enough to have a good Neurologist fighting my corner but I still think it's going to be a long hard fight !

    Hugs to you all x

  • This is EXACTLY the reason why I refused to be seen by Dr Sangle as I did a background check on him and asked to be moved to Prof D'Cruz who I had actually seen once before. I could find no evidence that Dr Sangle had experience in APS - Lupus but not APS.

    I wrote to Pals and firmly requested being moved which was accommodated, I stated the reasons above. You must do what others have suggested and write to Pals, tell them that you do not accept your discharge and you want an immediate appointment with an APS specialist like either Prof D'Cruz or one of the other APS specialists. Tell them you will not come off your anticoagulant medication until this happens but if your GP cant continue to prescribe it because of any letter that has been written by Dr Sangle and anything happens to you as a result, you will hold the Hospital and Dr Sangle personally and directly responsible.

    He had no right to discharge you with positive results and Prof Khamashta puts no one on Fragmin for no good reason.

    For anyone else going to their appointments you must be ready to counter what these Dr's tell you and fight your corner. The NHS guidelines clearly state that a patient MUST agree with the pathway that they are being put on and that means if the specialist intends discharging back to a GP's care. They have to discuss with a patient and agree with them what they intend to do. So if you a) have not been part of a discussion and been discharged without the opportunity to discuss it and give your opinion b) you do not agree with what is being presented to you and want a different course of action, say so at the time BEFORE you leave the appointment and make sure it is documented on your notes. Then if you are still discharged COMPLAIN!

    Many people do not know their rights and the Hospitals are so strapped for cash they just blindly think they can cut corners without following the rules.

    As hard as it is we all need to become informed as well as expert patients of our condition and this very scenario proves why.

    Good Luck and please let us know how you progress.

  • All what you have said is correct. They have to adhere to a critical which was set out by CQC after I went to the Ombudsman. It would appear they are still discharging patients leaving them without care. It's appauling.

    Bernadette

  • Hi APSNOTFAB, Thank you for your lovely and very helpful reply ! I will get onto Pals first thing Monday morning and request to see someone else. Thank you again your a Star !

    Best wishes x

  • As I've posted here before, I had an issue with the Duke hematologist I saw as a condition of having a hip replacement at. Duke in 2013. The Duke heme thinks I do not have APS and wants me off warfarin. Fortunately, though he told me he did agree with the Duke hematologists theory that I do not have APS, my local heme agreed to keep me on warfarin because " you seem to be doing just fine on it." This local heme is retiring soon so I think I will move my treatment back to the far away Kentucky heme who first diagnosed me. after all -- I'll only make the drive once or twice a year and there is a great restaurant and a pretty good bookstore nearby.

  • This is a tricky one. Different patients seem to either do well or do very badly with any consultants. I read a glowing review on Dr Sangle elsewhere but I am not surprised by the OP and things mentioned. One needs to be very cautious, even if one dr is suggested by someone else (who clearly had an excellent experience), you may not get the same results (not just Rheumatology). My advice is , "just be very careful" - you may get to hear something good about particular dr from another patient who had an excellent experience but you may not have the same experience. Assuming just because one dr was said to be "wonderful", he may not be, to someone else. It often helps to read bad reviews but rarely poor reviews come up on a public forum. I often wondered if it would be useful to have a facebook site for members where these sensitive info could be exchanged. I bet people's experience with a specific consultant may vary. Just because you read about one dr's glowing review, best not to assume you will get the same level of help. So thanks so much to jessie for certain. I admire your honesty. Hope you get this sorted out soon. Best, x

  • Hi. I've been goin to the lupus clinic since 1997.I've also been told that on my nxt appt I will be discharged.since it moved to guys from tommies and merged with rheumatology doesn't feel as personal as it did.And you are right they are trying to get patients off the books

  • They are, and I have the proof, as I have mentioned above.

    Bernadette.

  • Thank you everyone sounds as im not alone ! I will be contacting Pals on Monday !

    Best wishes to you all x

  • Do not be fobbed of with PAL'S I went straight to the chief executive and made a official complaint. It was then taken to the Ombudsman.

  • It could also be a monetary thing. Lovenox is very expensive, so is getting weekly INR testing. Perhaps they're trying to save the NHS money. I also fear the day when I will have to challenge my diagnosis with some punk doctor who wants to take me off of blood thinners. I have all of my medical records saved on my computer, on a disk drive, and printed out and filed away. I tested high positive for APS 4 months after my blood clots, and I tested a high positive again 12 months after the first test. They can't tell me that I had a 12 month long infection. The last thing I need to do is get a copy of the CT scan of my lungs that show the PE's, and then copy of the Doppler Ultrasound of my right leg with extensive DVT. I have the reports; the written reports from the radiologist, but I want the actual film of the scans. No one is ever going to mess with my diagnosis. I have an extra 30 days worth of Warfarin that I've saved up over the past two years just in case my doctor cuts me off of blood thinners. It's a shame when we the patients have to be on the defensive all of the time. But it is what it is. You really need to fight this. I hope you get a better consultant next time!

  • Hi Sirclotsalot,

    Oh bless you such a rough time and you still need to keep fighting against these people with such overwhelming evidence that you have APS ! I have done the same kept all my results of blood tests from other hospitals,MRI results and neurology letters. They told me at the Lupus unit I could only have 3 months supply of Fragmin at a time with six monthly appointments I was in fear of running out so I would miss days taking my medication. I used to ring up and try and get through to a nurse to get a Dr to write me a prescription,the nurses never reply to your messages so long journeys up to the hospital to try and get a Dr to write a prescription. Without Fragmin I am very ill,all the MS type symptoms with the risk of clots,i have been hospitalised twice before medication because I couldn't even walk and lost a lot of my memory. Thank you so much for sharing your experience I really feel for you all this poor treatment by the NHS is unexceptable . Keep up the fight the same as I will ! Take care Hugs x

  • I think we should all find out how to contact Prof. K and beg him to come back and look after us.

  • I wouldn't be surprised if Prof K had been given a hard time by these other "people", who call themselves "rheumatology consultants" and at times, other "professors" (what for?). They are clearly busy counting costs and looking at spreadsheets and listing which patients to single out / get rid of, to save more money by giving us some unscientific excuses devoid of medical science. It's rather suspicious the way Prof K left (it was quite sudden without much notice?) I often wondered if the whole "money, money, money" (ABBA's song lol ) culture of guy's /tommy's upset him? I wouldn't be shocked in fact, AT ALL. I have no respect to these people. The helpful post by sirclotsalot says it all. I agree, over the past few years, drs weren't the greatest helpers and some are in fact, killing us by their ego (except very few good drs-not many-who try to help downtrodden patients). Do I sound bitter and angry? I do feel that way... This is a rare disease most likely to be originated in genetic factors. I doubt "lupus unit" can begin to unravel as to what this condition is all about except very few decent (and ethical) consultants up and down the country. jessie, good luck!! Again, thank you for your great head's up. :-)

  • Hi Ashfordgreen,

    What a brilliant message,you are totally spot on ! Yes your right it's all about Money and figures at the end of the day and not forgetting those Drs with over inflated ego's as well ! No you don't sound Bitter and angry just very concerned by the way the NHS treats us patients. We should feel safe with these so called Drs not fighting just to keep the medication that potentially keeps us alive. Dr K was a good example of what a doctor should be and my guessing is the same as yours either he was forced out or he had enough of all the politics !

    Anyway thank you again for your message, keep strong and hugs x

  • Sue,

    This very same subject is being discussed on the Hughes_APS_Support group on Facebook and complaints have been forwarded via Lupus UK and St Thomas' Lupus Trust. It will be discussed at the next Lupus team meeting and there are two consultants in particular have had complaints made about them.

  • I think your right there Sue he was wonderful ! x

  • Just so you all know, there is still a petition on here which was started about 2 years ago when St Thomas was discharging patients from the unit. Go to the top of the page under "pinned posts" and scroll to the bottom where you will find it! We can keep adding comments to this and keep sending it to anyone who we feel needs to read them! 😱

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