After being a Lupus & Sjogren's patient for 14 yrs at St. Thomas they are discharging me?!

I cannot for the life of me understand why? Mind you the consultant I saw said that seeing I had a rheumy at my local hosp I would be o.k with him. She said that i'm usually put in for the next available appoint which is always a 1 yr to wait!!! She said that I was on all the correct meds & at the moment there was nothing she could do for me! But she told me if my Dr thought I needed to see them, to get in touch with them & they would see me in 2 wks time? Can you believe that? Because I can't ..... i've got so many medical problems it just doesn't make sense to me! Apart from the 2 mentioned, i've got fibro, APS, RA, MVR, Osteoporosis, Osteoarthritis, Degenerative disc disease, 2 major strokes, 5 t.i.a.'s, Angina, Temporal Arteritis, Vasculitis, Raynauds syndrome, Asthma, & I had stage 3 Breast Cancer & had a radical mastectomy with node clearance, also have a significant curve at the base of my spine & damaged discs had to have surgery, now i'm wheelchair all the time & have had several falls in my bathroom & lounge usually when transfering! 3 mths ago had a fall & landed awkwardly against the toilet, had to go to A & E which showed a had a crushed vertebrae of L2, a couple of mths ago I had cracked my ribs on the left side & 2 wks ago I hurt them again & cracked another one! Then to my horror had to have x - ray on my neck as been getting terrible pains in it! Got a message my Dr wants to see me to discuss them. She said the report said I had significant changes in the vertebraes of C5, C6, C7 where they're jutting out & the discs had more or less gone! I've had a couple of bad accidents in the past where cars have shunted in to the back of me & had severe whiplash! Now with all of this going on & have several other medical probs but not going to push my luck LOL. I'm on a massive amounts of meds, my pain meds are huge ...... very huge but after having this i'm in pain constantly! Getting to the point I don't know what do about myself! I'm so sorry for going on like this, it's nice to let it all go! Thanks for reading this.

20 Replies

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  • This beggars belief, what is the world coming to?!?

    For once i'm gobsmacked!

  • I've been feeling a bit like that myself!

  • Lost for words............

    take care.

  • Thank you & you take care too.

  • Oh my, I really feel for you, I've never read a list like that! you deserve the best care...x

  • Thank you I really appreciate you saying that. x

  • Gobsmacked

    ........... omg so disgusting...... :-(

  • It is isn't it? I feel like i'm going round in circles!

  • so sorry, but this is what is happening across the NHS, specialist units are transferring care back to your local hospital, yet keeping an overview and an emergency referral in case its needed.

    when you think about it it could be argued that by doing this people may get a triage consultation faster with a specialist in that field. the major concern is that people may be referred back to poor quality care due to a variety of problems. just playing devils advocate on this one, can see both sides. take care Mark.

  • Scoobydoo1 I totally understand where you're coming from, this is something that I have spoken to my G.P about & we are thinking that this may be a good thing in the end. Well that's the best way to look at it, for me anyway. You take care aswell Mark & thank you for replying to me.

  • I have read quite a bit about patients being discharged from that particular hospital, it must be an organisational thing. Don't take it personally. It must be very worrying for you.

  • It is happening a lot at St. Thomas's. They take a lot of patients from all over the country so much so that they seem fit to bursting at times. It does worry me too, but what can I do?

  • So Sorry to hear all this but realistically we all should try to understand that it is not possible to be seen by only the Medical team attached to Lupus Centre in London , all the time.. Our local Consultants should be our prime leads .They will get written updates from other doctors and if they don't we have to ask them to get them! With so many problems as listed by goldengirl 101- not lupus alone-I would feel it's important to have medical management as close as possible .The more local Doctors know you the better it should be .Most of us are under the care of the NHS. Without them I'd be lost. We ,too ,have to understand the dilemmas and difficulties that face them too. If people disagree that is your right .Lupus sucks but I don't have the energy or money to go further my local consultant and his good managment keeps things on an even keel. Try speaking to your local Medics about this if possible-it may be better than you think . Best of luck-don't despair

  • I do understand that it's not always possible to see only the medical team attached to the Lupus Cinic all the time. I also know that these days our local consultants should be our prime leads! You also say that the many problems i've got not just Lupus alone you feel it's important to have medical management close as poss & the more local Dr's know me the better it should be! Now .... when I first attended St. Thomas's clinic they were excellent & nothing was too much bother, infact they themselves wanted me to see their own consultants at St. Thomas's as this made it easier for them in the respect of having everything under one roof (their words). Because they have a lot more resources to hand than the local hospitals have! I don't think I complained about the NHS itself in anyway with regarding any treatment i've received! I'm very grateful for the help I get & I do understand the dilemas that they face. I was off loading a lot of worries not meaning to disrespect anyone! You are extremely lucky to have such an excellent consultant. But you say if nobody agrees thats their right, then you say Lupus sucks & you don't have the energy or money to go further than your local hospital. I don't always want to travel & don't think I said anything about money?! You are right Lupus does suck & it's an awful disease. Thank you for your reply & will speak to my local medics. I wish you all the very best.I would like to apologise if i've offended anyone regarding my post.I am sorry if I have as that has not been my intention. :( :(

  • The NHS just gets worse I'm nowhere near the stages of u apart from APS and lupus so far and if I heard that news I would struggle st Thomas is like the biggest support they are the ones who know what's going on with me its a comfort place I'm very sorry to hear the dreaded news like that I pray nothing goes wrong for u and hopeful that u shall get some different treatment elsewhere good luck

  • Thank you very much for being so understanding of my post & what i've been trying to say. I just wanted to air my worries & concerns. You saying you would struggle if you didn't have their support & they know what's going on with you ..... this is exactly how i'm feeling & right from the start they wanted me to see their own hospitals consultants as they wanted evrything to be under one roof. This was started by Professor Hughes himself & I was always given an appointment for 3 mths at a time. Not having that any more has been hard for me! But i'm sure I will get used to it, well I shall have to! lol I wish you all the very best.

  • hi do you take statins or have you done at any time i have and have muscle pain ,cramp and lots more things check this out

    and have you tried this

    i will never take another statin i now do intermittent fasting 11am -7pm and feel so much better i take ubiquinol ,vitamin d and calcium

  • I do take Statins & shall check that out a bit later & I appreciate you telling me this. Many thanks :)

  • i took simvastatin ,rosuvastatin and pravastatin and had swelling to knees ,ankles and back ,cramp ,bones sore, very low feeling useless,muscles very sore and limited with left arm ,loss of feeling in my arms ,leg cramp ,numbness ,tingling and theres more this is all since taking statins

    try intermittent fasting 11am till 7pm

  • Yes I can believe this and know that they do this for a very good reason! Travelling into London is a risk for many of us lupies and if they can keep us in our local communities it is better for us, a lot of us have to travel very long distances to travel to St Thomas' and with an impaired immune system on a train or buses we are at risk from all the nasties floating about on the journey especially if you are using trains in rush hour! Another thing is many of us have difficulty walking sometimes and so a trip to a local hospital is easier and thse who work take less time off work by just staying local.

    One more thing - don't forget that St Thomas see people from all over the country who don't have a local hospital with a rheumatology department near them so they have to fit all of them in at some point as they are so specialised where as you are lucky enough to have that option of a local hospital with the right department to see you so maybe you should count your blessings as fitting you in at St Thomas in a two week slot if you need it is pretty good, fingers crossed you won't need it. I'm sorry if I sound like I'm nagging or having a go but see things from both sides of the fence having had the NHS as an employer as well as using their services regularly.

    Good luck

    Madmagz x

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