Does anybody else feel that they are totally on their own? I feel like I am my own doctor...I go in to my GP tell them what I need and then leave. No questions asked....When I have a flare up I go downhill pretty fast and need to take steroids. So I now keep a stock pile. I am meant to get blood taken at the start of a flare but I can't even get an appointment for that without waiting days and by then I am really ill. I just think what's the point, I'd be as well buying my meds online and never going the docs again. My consultant is not bad but I only see him every 6 to 10 months.
Sorry just needed a rant! 😖
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Stouffer666
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Well it does seem like the patients are more clued up on how the illness affects them than the doctors so at least you know you're in safe hands....your very own safe hands in fact!😘
That was really difficult for me to get my head round at the start; I guess I hoped I would get treatment or even find a way to be in remission or even just some diagnosis and answers. However as time went by, I realised the best I could get would be for symptoms to be treated, but for the most part I am on my own. I never see my GP unless I need a referral; they just can't do much of anything for me.
On the downside, I ended up being my own doctor, and I don't have a degree. So I often made a lot of mistakes and when trying to ask for help I tended to have issues with 'self-diagnosis' that got some GPs backs up. On the whole, I've found trial and error works best, finding things that worked, things that didn't, and (thankfully) having the finances and time to be my own specialist.
I would very much encourage you to get the bloods taken, even if you're really ill. Even if you need to ask for a home visit to do so. The point of it is to leave a 'paper trail' of how things are progressing for you. I know when you feel awful, it can be hard to find the motivation to go in, but what I discovered early on is if nothing else, the bloodwork results proved I wasn't mad! With consistent bloodwork, they could see my inflammation levels going through the roof, and then I eventually started getting actual treatment.
Be brave, be strong, but also, be your own advocate. I wish you courage.
I feel very much this way just now too. I'm in the process of relocating for the third time in 18 months and at last I have a long term GP practice again. But I can't get appointments for weeks ahead, and when I go and see the one GP whom I quite like, she offers me very little by way of checks or questions although is only too happy to dispense prescription meds at my request - no questions asked.
My old gp practice of 28 years did seem to care. They contacted my rheumy for me, let me email to ask them questions or report symptoms and usually responded promptly. Equally my old rheumy let me email him and responded promptly too, although consultations were very few and far between. I could usually see a gp on the same day as I phoned - no matter how busy they were - they would always squeeze me in somehow.
I hadn't realised how good this practice was until now when I don't yet have a named rheumy - no nurse helpline or GP I can contact directly. They are all perfectly friendly but it's all booked online and very impersonal and DIY. I know it's not just me because I have friends nearby who both have chronic conditions and they are so upset by the lack of care or interest that they are considering registering in a practice outside this catchment area.
I think GPs do matter very much for those of us juggling with autoimmunity and medications. As highly trained professionals they should care enough about their patients to treat us as individuals and listen to our concerns about symptoms and medications and give our problems proper thought. I have had GPs who do give their jobs this extra dimension because they are highly committed to their patients so I know it's possible, even if the current financial climate and huge pressures on the NHS makes this much more difficult.
I am so sorry you are having the same issues with care as so many of us here. The symptoms of Lupus are so varied and constant that I found Doctors just switch off after a while as if I am a hypochondriac. No one is monitoring me at all - research if you can through this sight and British Sjogren's Syndrome website for a hospital or clinic within travelling distance. I found St Thomas's Hospital in London and then Brighton University Hospital- look on line for Rheumatologist or Immunologist who specialise in this area of Immune problems and asked to get referred, in fact DEMAND to be referred. They tend to "palm us off as they are less informed than us ". A Doctor who suffers from Lupus told me that! Good luck.
I am literally on my own and seriously considering just giving up. my latest insult front the NHS really made me think about just not bothering to go again.
I recently visited the world's worst rheumatologist. He ignored all my symptoms and simply waisted my time. He actually said "as you merely don't want painkillers then you obviously have a low to no pain threshold for any pain " WHAT AN #@$/^^'$. I am deadly allergic to any painkillers. Then not only said I had simply cold knees and need to just rub them. I now have to use an electric wheelchair to get about as my joints just give way and I'm in permanent agony. Then topped himself by giving me a prescription for meds that clearly say not to be taken by a female let alone one with heart problems. That man was deadly dangerous let alone the fact I was in agony after the so called appointment and have photos of the hand marks and finger prints on my knees and hands/wrists. Bruised badly and was in agony for days. That man should be struck off.
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