Medical treatment in The States

[FletchingStraight]

Does anyone have any experience of travelling to the US for medical treatment?

My DD has been unwell for a number of years & getting progressively worse to the point where she can no longer attend school (yr8). She's under a variety of specialists & although some tests done are out of range they're not hugely so. So she doesn't fit into a nice neat box for the Drs & they're scratching their heads & just offering lifestyle & psychological support - it's NOT anxiety.

We're all fed up & just want to help our girl have a more normal life so are seriously considering whether the US can offer anything different. I've researched where we may go but haven't contacted them yet - I've asked for some tests to be updated here as not done for nearly a year so want that data first.

Anyone have any experience of accessing healthcare there? I know it'll be expensive but we as a family can't continue like this.

I've lived in the US and needed significant medical procedures and the care was extremely good. However I saw the bills before the insurance did their bit and I think you just need to be aware of quite how expensive treatment there is.

Thanks @tilestoclean I'm going to contact the hospital that I think can offer some help, I'm hoping I can give them some of the history & test results we have so they'll be able to see if they can help & maybe give a ballpark as to what they may need to do & likely costs. We're expecting it'll be several thousand pounds

Very hard to know without having an idea as to what sort of symptoms / diagnoses are being considered....

A full set of neurological investigations for example could easily cost £20k - a PET CT alone can cost up to £10k in the USA, then the cost of appointments etc. And that's before even considering treatment costs....

I'd start by looking at likely or possible diagnoses and working back, and researching european providers that specialise in the possible issue that are likely to be equally as good and probably cheaper.

That's good advice @FixTheBone
It's looking like an immune issue, not autoimmune but a malfunctioning immune system. We have 1 further consultant to see her, recommended by an immunologist we've seen privately, but he's already stated he's not sure if he can help. Whatever's going on it's rare.
There's possibly somewhere in France that may be the right route. I wasn't sure how easy it would be to access healthcare in Europe, we are European passport holders but i guess if we're paying anywhere will take our money!

My sister's daughter was in hospital recently and the bill was $200,000 - she has good insurance but still had to pay a few thousand. I had to take my son to A&E there snd the bill for four hours and some steroids was $1,200 over six years ago. An epipen was prescribed-$500!!!
And don't forget travel expenses.
Now of course we'd do anything for our child's health, but be sure the US is really going to offer more than here.

Have you thought of checking out some reputable alternative medicine providers first? I have friends who have been cured by naturopaths of conditions that are incurable as far as allopathy is concerned while my dd's health improved wonderfully with the help of an excellent acupuncturist.

I work in healthcare in NY. Hosptials all have what's called a charge master. It's a list of prices for services that's intentionally inflated over what they expect to receive. They do this as a negotiating tactic with insurance companies. I recently had a treatment that was billed at $40,000 but was adjusted down to $8,000 based on their contract with my insurance company. I paid nothing as I have already reached my out of pocket maximum for the year. I only mention all this to indicate how unrealistic the billed amounts are.

Foreign patients pay far less than charge master prices too, as they are paying cash up front for services. Large hospitals have departments that do nothing but accommodate patients from overseas. Like this one:

International Patient Services

So you contact them ahead of time, one of their medical staff develops a diagnosis and treatment plan, and they give you a price. NYU Langone is an outstanding hospital that treats many patients from the UK, but I have no idea if they are the best choice for your daughter. If you can, get a recommendation or referral from your specialist in the UK for someone in New York or Boston.

I'm happy to answer any questions you might have.

@mondaytosunday wow that's a huge bill 

@Coyoacan we were working with a functional medicine practitioner before it all went to hell. We had spent thousands on testing & her fees & it didn't make a blind bit of difference in 18months she just ended up worse. I have no faith in alternative practices now, not much in allopathic medicine but at least it's science based

@MissConductUS thanks for the information that's really useful. Huge markup for Insurance!
We really don't know what to do right now but need to do something - so even if it's just researching & then we rule it out at least I feel like I'm doing

I hadn't heard of functional medicine.

I really hope you find a cure for your child's problems.

I'm not here to sell you anything, there are charlatans in all fields of medicine and sometimes doctors just don't manage to find the solution.

@Coyoacan sorry it wasn't a dig at you I'm just frustrated by the whole situation.

Drs here are being so pedestrian but yet her life is in tatters. She's been unwell for years but getting progressively worse the last three years & the sense we're getting from some of them is it's anxiety based. It really really isn't but we cant yet PROVE it with a fecking test result. 😔

@FletchingStraight, how are her current doctors connecting her immune system dysfunction with anxiety? Of course she's anxious, she has a chronic disease they can't diagnose!

This list of the best hospitals in NYC is pretty spot on. You might also consider a children's hospital.

Best Hospitals in New York, NY

What hospital are you considering? PM me if you don't want to state it here.

@MissConductUS so the immunologist has found evidence of immune dysfunction & feels it's relevant but her symptoms now are predominantly gastric based. Gastro's, who think they're God, are ignoring all of that & saying basically IBS (read anxiety). Despite the fact it doesn't explain away all her symptoms, nor the severity of them & the findings of the immunologist.
We've jumped through every hoop they've put in front of us & nothing is helping but still they're preaching from their pedestals.
I feel like I have a huge lump on my head from banging against a brick wall.

Thanks also for the children's list of hospitals, much appreciated

Have they done a colonoscopy to look at her lower GI tract? Immune system disorders can cause GI problems. Incipient Crohn's disease or ulcerative colitis can be misdiagnosed as IBS. She may also have two separate disorders.

I'd start with a pediatric immunologist, then look at the GI issue.

I'm sorry your doctors are dismissing you. As a mum myself, I can imagine how frustrating that is.

@FletchingStraight I never dreamed you were getting at me. You have all my sympathy. I still think you could try an acupuncturist though. I took my teenage daughter to one for what turned out to be a hormonal problem and there was a huge improvement with just the first treatment.

So sorry to hear about your daughter. Look into MCAS - Mast Cell Activation Syndrome and see if it fits. There are doctors in the UK that can help if you think this fits.

If you are wealthy and can afford it I would definitely try the US.

If you have financial limits, then obviously you need to ensure costs don't spiral out of the range you can afford.

That's how I would decide. I do believe the US can diagnose and treat a wider range of medical issues than the UK can.

I do believe the US can diagnose and treat a wider range of medical issues than the UK can.

A hospital I used to work at had so many British patients the catering department put fish and chips on the menu.😀

It's true, especially in the teaching hospitals. That's where the cutting edge research is being done. New treatments and diagnostics tools are available here before the NHS adopts them, often years sooner.

The medical system can be great and they do try to get to the bottom of things because they just keep testing for things, they get paid for it so why not. You will likely be looking at a few thousand for basic things like scans and tests, if she needs to stay in hospital that will be expensive too, all before treatment. I would be interested in what prices they come back with for some things.

How funny about the fish and chips!

It doesn't surprise me what you're saying.

I know that the US is running a lot of amazing studies that aren't taking place in the UK. Greenwich Life Sciences, for example, is executing a ground breaking phase 3 cancer vaccine with centres across the States and in the EU, but none in the UK because Brexit has made it too difficult.

I really don't get it why people think the NHS is so great. It's so slow and behind.

If OP's daughter isn't hospitalized in the UK, she won't be in the US either. It won't be cheap, but competition keeps prices down for international patients coming to NY. I think it's wise to discuss treatment costs with two or three hospitals (NYU, NY Presbyterian, and Mount Sinai, for example) before scheduling treatment. Attracting international patients is incremental revenue for these hospitals, and they do compete for it.

I dont know why you would think a doctor in the USA is going to be better at diagnosing your daughter than a doctor in the UK

because they often are? Because they have more advanced treatments, more clinical studies etc?

It was more if she needs a hospital stay for their tests or treatment rather than because she is sick if you see what I mean.