A Stay at an NHS Hospital

I've heard a lot of complaints about the NHS from both Americans and Brits. I was in the hospital for five days a few weeks ago, and have this to report. (Then back to you, Peter Jennings, in New York.)

A brief background: Last spring, I was diagnosed with a degenerative bone disease called osteonecrosis (or avascular necrosis--AVN). I had had an aching hip for over six months after slipping in the tub, and when it first happened, had X-rays (in the States, Christmastime 2002) that showed nothing. The doctor there said there was no fracture that he could see, and that I must have just very badly bruised the area. I played stoic until it got to be too much, and went to my GP here, who ordered further X-rays. The radiologist said there was something seriously wrong with my hip, but he couldn't say what--he hadn't seen anything like it before. So he referred me to an NHS orthopedist, but rather than wait three months, I went to a private orthopedist, who diagnosed me with AVN after looking at the X-rays. (Yes, I hadn't heard of it either--it's relatively rare.) It affects joints--the blood vessels in the joint die off completely, and the bone subsequently starts to collapse. It can attack a single joint at one time, multiple joints at one time, or any joint at any time. When I had the X-rays in the States, it was too soon for it to show up. Then (here) I had an MRI (also privately), to see just how far it had progressed. We're saving money so that I can get a procedure done either here or in the States that doesn't require a total hip replacement, which is all the NHS will cover with this particular ailment. Anyway, that was a year ago, and I've been trying to avoid painkillers and limping around since.

Anyway, to fast forward to July 4th evening: AVN symptoms consist of both a constant ache in the joint, and periodic incredibly sharp jolts of pain in the joint (I can't really adequately describe it--a spear being stabbed into the joint comes to mind). I had a jolt like that July 4th, tripped over the edge of a rug, and landed with all my weight on my elbow, which broke in two places (I heard it--it was sickening). My bone, though not piercing my skin, was sticking out. I could barely breathe, much less stand. My husband (Andrew) called an ambulance, they gave me morphine on the spot before taking me to the hospital, and I was supposed to have surgery at 10 a.m. Monday morning (July 5). That didn't happen. In the meantime, I wasn't allowed any water, just in case I was supposed to go to surgery, and by 10 p.m. that night I insisted that I have something to drink. (It had been 24 hours of no fluid--not even ice chips.) The next afternoon, I finally went to surgery. In the meantime, I was on a morphine drip. The surgeon, whom I've yet to meet, put a metal plate in my arm and at least ten pins (the area looks like a railroad track in the X-rays), trying to fuse the bone back together. I'll never regain full use of this arm again, I've been told. But on the up side, it was the first time in over a year and a half that I wasn't in pain with my hip (due to the morphine). I was there five nights, and they wanted me to stay another two (bear in mind--they usually want patients in and out ASAP), but I was fed up and just wanted to go home and possibly get some sleep. (This is turning out to be a longer story than planned.) Anyway, I called my GP and told him it was a godsend to me to realize that I didn't have to live in constant pain, and told him that people in the States (on the two online support groups I'm in) were prescribed meds stronger than the paracetamol and small doses of codeine typically prescribed here, and I specifically asked him to put me on OxyContin, which has helped a lot of the people on those sites. I told him I was aware of the high risk of addiction, but that I was tired of living like a hermit until I could have my hip operated on. Amazingly enough, he wrote me a prescription and let my husband (who's also a patient of his) pick it up. I've had to double up on it here and there, but again, it's been a blessing. When Andrew went to get the scrip filled, the pharmacist acted as if it were a scrip for heroin (it was a two-day wait to get it filled, for them to scrounge around the area and find enough of it--56 pills--two a day for a month). Anyway, all in all, other than the surgery delay, the NHS wasn't  that bad. Now I just want to get the pins that are protruding from underneath my skin taken out, and am further dreading the inevitable hassles going through airport security.

I told that story because the NHS can actually be worthwhile sometimes, waiting aside. It's too bad that a similar national health care program seems practically impossible in the States. And I even got out of there without contracting MRSA.

Wow, Suzanne, thanks for sharing your story!  I'm sorry to hear you've been having such difficulties.  I'm glad to hear you've found something that helps though.  Here's to hoping you will be able to have the surgery you need sooner rather than later. 

I've not had any overnight hospital stays, but have to say I'm pretty pleased with my GP.  I was his patient at another surgery for a year and a half and had never met him and always saw someone else.  He finally left that practice to begin his own practice and I'm glad he did because it was nice to finally meet him and he's been wonderful.  I did see him a few months ago and told him about the carpal tunnel symptoms in my wrist.  I told him I was telling him now because I knew there'd be a wait.  He happily referred me to an orthopedist.  I've received a letter saying there's approximately a 4 month wait to see one.  I don't mind since I'm not living in constant pain yet, but can't imagine waiting that long if I was! 

Take care, Suzanne and I hope that things continue to get better.

Oh Suzanne, I'm sending you good thoughts.  Chronic pain is a terrible thing to go through and live with.  I'm glad you found something that finally helps.  Commiserations about the elbow-my Dad did the same thing to his when he was younger. 
Take care of yourself. 

Oh Suzanne!  I'm so sorry that you even had to find out what the NHS was all about! 

Myself, I have a "rare blood disease" that had been in remission for a few years.  Sadly, I found that I'd come out of remission (on my birthday no less) and had to learn all about the NHS.  I was a bit worried to begin with, having heard all the "horror" stories from other people.  But they were great.  I suppose I was lucky in that they concider my "disease" (I hate that word) to be highly dangerous, because I was given tests immediatly and was seen every week by a specialist.  While I am still not back in "remission", I now just have to have blood work done on a monthly basis and only have to see the specialists if things aren't in a "reasonably safe" zone. 

I was certainly impressed with everyone I met durring my stay in the hospital and subsequent visits.  There are a lot of things I could critique in the NHS (and in the States) but there are so many great things that they offer as well...it certainly outweighs the small amount of negative

Again, thanks Mindy. Does your dad still have problems with his elbow?

He does I'm afraid.  A result of not having good insurance and not being able to afford to take time off work when we were kids.  He did have a further operation on it to 'tidy it up' a couple of years ago-but has never really had mobility.  I hope you have better luck with yours. 

Wow Suzanne,  what an ordeal!
I just wanted to send along my good wishes for a speedy recovery as well! I'm so glad you've found the NHS a useful system for you- I, too, have also found our local hospital to be a godsend- they are professional and very helpful- it's also really clean- which thrilled me-especially good at a time when we have used it a lot in the last few months! My hubby also broke his elbow and was in great pain- morphine sure did the trick for him, too. Best wishes that you are able to get a really good program of pain management in place!

Jen

Well Suzanne and Frances I'm sorry you're having health problems but I'm very glad to hear the NHS is working well for you on the whole.  I wsh you both the best with your recoveries - keep us posted.

take care

Liz

I've been very pleased with the information from and patience shown by nurses here in this country...even though running ragged, when they are with you they have all the time in the world. I've only spoken with one doctor and I left him with mixed feelings. I basically told him what I had and what medicine works. (I'd had strep before.) He said "fine" and wrote out the 'scrip. "Next!"

*hugs* for speedy recoveries!

Thanks, elle. Are you wearing any kind of wrist brace? How did you end up with CTS?

I have a thermal wrist thingy that is meant for sewers that I wear sometimes.  I actually saw a doctor about the carpal tunnel probably about 5 or 6 years ago (this was in the US though).  I saw an orthapedist who gave me a wrist brace that went up to my elbow.  It was so uncomfortable I hated wearing it.  So really I try to use preventive measures by having wrist support on my mouse pad if possible and sometimes wearing the thermal thingy.  The brace is so restricting, it's difficult to want to wear it because I go from typing to mouse to writing and typing and writing are difficult with the brace.  It's a job hazard though and I'm looking to get out of secretarial work eventually.

Suzanne - thank you for sharing your story - and I'd just like to add some additional hugs to the store of hugs you've already received. I'm glad that you are getting the care you need - and also to hear a good story about the NHS! Theya ren't my favorite people in the world, but then again sometimes it is all down the the people you get. Like many things, wouldn't it be nice to find some kind of blend between the US and UK system? Anyway - my thoughts are truly with you... ((hug))

You poor thing Suzanne! I hope you can feel better soon. I am glad the paramedics gave you morphine. My sister-in-law broke her leg and they wouldn't give her morphine until she got to hospital (this was in the US--don't know if it varies by state).
The op that is an alternative to a hip replacement--might it be worth finding out if it is available privately in any other country if not the UK? The US is the most expensive country in the world, whereas I know places like France are more than 1/3 cheaper than here in the UK (for example cataract op £3000 UK, £900 France). Lots of people get ops abroad to save money and healthcare in France is usually excellent (you may even get part of the cost paid.  think you have to get a form E112 from the Post Office).

Squirrel,

I hadn't thought of France because I'm not an EU citizen. Also, there are two surgeons here who've been taught about AVN procedures by doctors in the States (Johns Hopkins and Duke University). One's in Birmingham, and the other has the London Harley Street address. She said it would cost £14,000 (it was definitely one of those moments that fit the saying, "If you have to ask, you can't afford it.") My husband and I both work for ourselves, so that's a lot of money to try to fit into your budget. He's had a longtime private GP, but I don't have health insurance either here or in the States. So It's honestly going to boil down to savings. Thanks so much for your advice, though.

Suzanne

P.S. I think it's hilarious you go by the name Squirrel on here. One of my nicknames for my English husband is Squirrel, due to his insatiable love of peanuts, pistachios, etc. He cracked up when I said there was a Brit (also married to an American woman) going by the name of Squirrel on here. Do you guys hold conventions of which I'm not aware?

Hi Suzanne,
It's OK you thought I was male    Actually Squirrel is my real name, I changed it by deed poll in 1997. It says that on my passport now. My American husband (we weren't married then) thought it was hilarious. Of course he's used to it now-we didn't meet until I was already 'Squirrel.'
Maybe the docs you talked about would set you up with a payment plan; £5000 down and the rest monthly payments?

I don't think you have to be an EU citizen for that Suzanne. The treatment is paid for by the NHS so you just have to be an NHS patient. Might be worth further investigation:

http://www.dh.gov.uk/PolicyAndGuidance/International/OverseasTreatmentGuidanceForNHS/GuidanceForNHSArticle1/fs/en?CONTENT_ID=4074778&chk=Hz6Fj6

Thanks, britwife. I'm so confused about which procedure to have done, where to have it done, how to budget the money, etc., that I'm stuck in limbo. My life's been on hold because of this, for almost two years, simply because if I have a hip replacement, I'll have to have another in 10 to 15 years (that's the average), whereas another procedure that doesn't require a THR (it's sad how you pick up the lingo when you're ill--THR means total hip replacement) is much more expensive, but iffy. I think my biggest fear is walking with a permanent limp, if my left leg ends up shorter after surgery. I walk with a limp here and there now, but I can attribute that to the illness--it's not written in stone yet. But surgery would make it permanent (does that make any sense?). The elbow break has left me petrified, not because of the pain--it's still painful and I still don't have full range--but because of the length of the very visible scar and pins poking out).

I wish I could hire a personal professional decision-maker (you know, similar to people who hire personal shoppers to get their clothes), because I'm shite at making major decisions (I think it's a perfectionism thing--terrified of making the wrong choice). I can let minana turn into weeks, then months, then years. There's no cure for AVN, and there's no one procedure for it. I wish there were. It would simplify things. Anyway, enough with my free-associating.