Point of view from the USA, from both a Lupus patient and GP (I'm them)

Since the medical system in the US is irretrievably broken and I have no idea how or when it will be fixed (and no energy left after nearly 20 years of GP practice [and now, in the past 30 months a triple diagnosis or SLE, Sjogren's and Hashimoto's thyroiditis] to go lobbying our useless government, I love reading the U.K. Lupus blogs.

I know that your medical and social system is not perfect or foolproof but the fact that you have a social safety-net largely free of gaping holes and a medical system that at the very least provides good affordable care makes me simultaneously thrilled for you and so angry I could punch someone in the gut. I have been a provider of care in this demented system since I entered Medical school in 1994 and over the past few years I have simultaneously become its patient and watched my career end because there is no room for a doctor who can't keep up with the assembly line care we provide here: 24-28 or more patients a day on top of mounds of insurance, bureaucractic, and compliance paperwork, patient calls and requests and so on.

I've tried to return to work 6 separate times, at increasingly easier (read lower paying) and easier jobs, and each time I end up hospitalized and completely wrecked. I'm on a lovely cocktail right now of Plaquenil, Prednisone and CellCept so my immunity is shot, and so is my energy. I'm in a great deal of pain but I'm trying to stay away from anything narcotic (as our lovely new "president" is on the warpath against all narcotics) despite the fact that they did help me. Instead I'm taking methadone at very low doses which does practically nothing and just try to meditate a lot... my quality of life has dropped significantly. I was being given infusions of the drug Benlysta but my monthly copay was going to run me anywhere from $500-800/month and that was just plain impossible for someone now living on short term state disability payments that barely cover my mortgage (and believe me my house is nothing to get excited about), the long term disability payments I lucked into getting through the job I had at the time of my diagnosis (although I had to sue them to get it and now lose 35% of my monthly payment to my lawyers and always will, until I hit 65, and the criminally low child support checks I receive from my Ex (who I admit, I divorced) for our fantastic 14 and 9 year old. I have 70% custody and do absolutely everything that pertains to them but he holds the purse strings and keeps me roped in with them. He's a multi-millionaire, sub-specialist physician, who my family and I helped put through 7 years of training, helped pay off his student loans, paid for cars and vacations and yet... he sees my illness and my suffering and my near poverty as my just deserts. He even tries to hold to paying for half of the kids' school expenses but you cannot get blood from a stone. The saddest part is that he has confused the living hell out of his children who go to a posh private (that would be called public there) school with kids who are forever jetting off to the Maldives and the condo in Aspen (which ex-dad-douche does pay for in order to look like he is doing the right thing) but he won't pay for them to go to a decent summer camp, or music lessons, or travel opportunities, or the musical theater camp my daughter so badly wants to attend. He could afford all of it and more but he won't do it and the kids are so confounded- they are slowly realizing that their father is a stingy, money hoarding asshole and they don't what to do with it or how it intersects with his love for them and so on.... truly breaks my heart. If I had it to give so many of those possibilities would be reality and that is what makes me so frustrated about being sick and not getting better after three years and stuck...

So anyway, back to the system here... Right now I have to pay 1,200$ out of pocket monthly for my health insurance because I've had to leave my most recent job and wait 36 months minimum for my Medicare case to wend its way through the system (another lawyer-but at least he takes his cut at the end and it is capped at 6,000$ total and is a one time thing). If you don't know what Medicare is you are lucky... it is usually used by people of retirement age 62 and above to pay for medical services, medications and so on, BUT, it is also for the disabled and proving that you are disabled is a high bar to clear. It basically cannot be done without a legal specialist working for and with you. Unless you are blind or on dialysis you have to wait 365 days, minimum, to receive benefits, and the normal time is closer to 2-3 years. Even transplant patients can be denied, unless they've hit total poverty and then they can apply for a humiliating thing called Medicaid- care for the poor- which is another set of unnecessary, demanding, and soul crushing hoops.

The saddest thing is that I want to work so badly but there is no place that can accommodate me. I can't perform the duties of my job description and I am not "reliable" as I can miss work at times for up to three days in a weeks, and all that's left for me at my current level of pain, malaise, fatigue and depression, and immunosuppression is to stay home.

My paternal grandfather was born in London around 1907 but my father never applied for his own citizenship and from what I can tell I am out of luck... and I keep hoping that there is some road to U.K. citizenship for me eventually... I am going to get out of this US suckhole somehow...

9 Replies

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  • Dear Lupusandmore3. What a tragedy it is that's unfolding in your country and for you personally. Thanks for putting it all down in a post here for those of us in the UK to better understand.

    But please don't idealise things in the UK too much though because they are becoming increasingly awful - heading in a similar direction to your own country even.

    My sister in law is a management consultant for the NHS down in the southwest of England and reports to us that her large local hospital is being taken over by Virgin - meaning that NHS services will be commissioned or subcontracted by this UK based multinational company.

    Maybe this will work out better for users, but it hasn't with the trains or prisons. This is the tip of the iceberg I'm afraid because the NHS is falling apart just now in many areas of the UK. It is just a matter of time I feel although I do my personal best, here in Scotland, to try and improve things as a volunteer.

    Lack of energy and poor health have got seriously in the way of my own ambitions as an artist. But there are always jugs of lemonade to be made from landing lemons, no matter how sour. Being able to communicate here with others such as you and many wonderful HU friends is defintely one of them!

    There is another user of this community who feels much the same way as you and is also a doctor from the US - Vaderviper - Dr S.

    Twitchy 😏

  • I agree, our system is at breaking point. It's only a matter of time unfortunately. There is just not enough funding to cover the growing expense of an ageing population and the increase in dementia, cancer treatments, fertility treatments etc etc etc and social care. I wish we had a magic wand but we don't.

  • Just to add to TT's post - the UK isn't all rosy either. Not least because being a GP there isn't significantly different from your description. Too many patients, too short appointments and too much paper. There are people who fall through the gaps - though, to be fair, far fewer than in the US.

    I'm British but I live in the mainland EU - if it weren't Italy I'd be considering citizenship here when Mrs Maybe messes up Brexit as she will almost certainly do.

  • Grrrrreat post Lupusandmore3 🌟🌟🌟🌟🌟

    Am TOTALLY feeling for you on ALL fronts πŸ‘πŸ‘πŸ‘

    My own family is all on the eastern seaboard. I've been actively involved with their healthcare issues ever since I moved to the uk & became a British citizen 4 decades ago. Even though I know all too well just how imperfect the Brit health system is, I am vvvvvv glad to be here with the NHS rather than in care in the States.

    wish I could wave my Magic Wand πŸ’₯ on your behalf...

    Am so glad you're here

    πŸ€πŸ˜˜πŸ€πŸ˜˜πŸ€ coco

  • Yep, having a non-means tested, free-to-access health service is a huge thing.

    I've worked both in the NHS and as a self-employed private practitioner in children's mental health. The great thing about private practice is that the quality I could provide was very high; my clients were children in the care system who were funded by state social services, and they were generally very willing to fund whatever was needed. The downside was that there were far more children with equally intense needs who did not have that funding, and so might get no service at all.

    The opposite was true in my NHS role, where I saw hundreds of children whose families had no way of affording a private service. The downside was that I worked under strict guidelines that limited the quality and/or quantity of help I could offer.

    Over 35 years in the NHS, the worst changes have resulted from fragmentation as parts are contracted out to private agencies and the way clinical decisions have become increasingly dominated by financial considerations. One pet peeve is how it's become commonplace to see people who have been trained by the NHS leaving and then selling that training (or resources they developed whilst in the NHS) back to the NHS in their new role as "consultants".

    I won't bore you with more of my opinions, but do hope you are able to find a way of escaping any system that makes getting basic rights harder for the poor and less privileged. Mx

  • Thank you for this - you have made me realise again how lucky I am. My sister is in the States and envies me (not the Discoid Lupus or Sjogren's) the care I get.

    Can I suggest you track down your grandfathers birth certificate? Ancestry.com are good

    I wish you all the best

  • Thank you. Your sister has every reason to envy the care you receive. I can certainly find documentation that my paternal GF was born in the UK. I have almost all of the family documents. Do you think it would actually allow me to apply for U.K. Citizenship?

  • You can only ask - you have nothing to lose. I have been seeing a Medicinal Herbalist and I have improved a lot. I was recommended to him by a Doctor who has Lupus ! Good luck

  • OK, that's it, you need to come over here - we need your skills and compassion and your experience in being a patient yourself. This country is screaming for GPs, there aren't enough of them.

    You'll find a lot of complaints against GPs on this forum but also a lot of appreciation. Don't let yourself be swayed by the former.

    Your husband sounds like a nightmare to deal with, particularly when you're ill and foggy of brain. But it will come a point when you won't be able to take it anymore, despite the strings he seems to be manipulating all the time to keep you dancing.

    It's great to have you here. Until you can jump on a plane and come over, keep posting here, we're listening.

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