Thursday, 16 March 2017

A Tale of Two Healthcare Systems

Six days from now, at University Hospital of North Durham, just up the road from Dave’s and my house, I’ll be having a hysterectomy – Lord willing and the creek don’t rise, as they say in the part of the world where I grew up and which, to this day, I cannot help sometimes repeating. Lord willing and the creek don’t rise. It’s quite the caveat, isn’t it? As if you need to hedge your bets not once but twice. As I look ahead to next week’s surgery, however, it seems an apt precaution; here in England, I receive my health care through the National Health Service (NHS), and this surgery of mine – originally scheduled for early February – has been postponed once already.

Departing the US for the UK, August 2015.
(We totally got bumped up to first class!) 
If this sounds like I’m getting ready to bash the NHS, let me quickly say that I’m not. When Dave and I moved to England in August 2015, it was almost one year to the day after my double mastectomy – the procedure which, for me, marked the end of my having breast cancer. I still get regular check-ups and tests, however, as a follow-up; I will have these for years yet to come. As part of that follow-up, too, I still take a daily medication. The hysterectomy that I am (ostensibly) having next week is a result of that medication. (It’s Tamoxifen, which does a great job at preventing a recurrence of breast cancer but can simultaneously do some funny stuff to other parts of your body.)

For these various reasons, in the 19 months that I’ve lived in the UK, I’ve had quite a lot of interaction with the NHS already. I am, on the whole, a happy fan of the system.

One of the first things I did when Dave and I moved to Durham was to enroll myself with the general practitioners’ group here in town. How did this happen? I walked down to their office and showed them my resident visa and proof that I live in Durham. I filled out 2 pages of basic paperwork. That was all.

North Road of Durham, on the way
to the pharmacy.
I saw a doctor, a GP, the following day. That doctor, after reviewing my recent history, referred me to a local oncologist to do some follow-up work. In my first appointment with the oncologist, I had a regular physical check-up with her, as well as an ultrasound (to make sure I was still cancer-free). She also wrote me a new prescription for Tamoxifen and got me signed up at a nearby pharmacy so that every 2 months my new dose would be ready and waiting for me.

Picking up my medication at the Boots Pharmacy down the street was, initially, a startling moment. 

“Now, do you pay for your medicines, luv?” asked the woman at the pharmacist’s counter.

I had to stammer around in response. Being used not only to paying for prescription drugs in the US but paying in fact quite a lot – even with decent insurance – I had no idea what she meant.

In the UK, however, as I soon learned, all prescriptions are free to those who make below a certain income level. After a little asking around, I found that Dave and I don’t qualify for the free drugs, and at the Boots counter, I braced myself for the fee. And how much did a 2 months’ prescription of Tamoxifen cost? A grand total of £8.00. (Just under $10.00.)

Since then, I’ve seen my oncologist, Dr. Taylor, every 6 months for a checkup. I’ve also visited my local GP for a few minor concerns; to get an appointment, all I have to do is call the medical center and ask -- almost always, they have an appointment available on that same day. Once I arrive, I’ve never waited for the doctor for more than 10 minutes. Most times, I’ve barely sat down and cracked open the latest Living North magazine before the nurse calls my name.

University Hospital of North Durham,
where I'll have my surgery.
At my last visit with Dr. Taylor, I told her that I’d had a little unusual bleeding. I thought I should mention it, since I knew that Tamoxifen could thicken my uterine wall and increase the size of a relatively small fibroid I had. (Neither of these developments are optimal.)

“It doesn’t sound like anything to be worried about,” said Dr. Taylor, “but would it make you feel better to have it checked out? We can do that, for your peace of mind.”

Ever since I had cancer, I’m all about checking everything out, so I said Yes. As a result, I had another ultrasound, this time obviously of my uterus, as well as an MRI. Following these procedures and a 40-minute consultation with a specialist in gynecological surgery, I opted to have the hysterectomy that will (probably) now happen next week. I’ve been told that I’ll be in the hospital after this surgery for between 4 and 6 days.

That’s a fair amount of medical care, yes? That’s a fair of amount of medical practitioners’ time and resources used up by little ole moi. And how much, you might ask, has it cost me? How much is it going to cost me?

The answer is: 0, and 0.

If you’re a US American, this will likely stagger your brain. It staggers mine, anyway.

All I have to do to receive this array of healthcare – for free – is be a legal resident of the UK. That’s all it takes for me – or anyone – to receive healthcare from the NHS. As much healthcare as I ever need.

Dave and I have not bought medical insurance in the UK. We don’t need it. We’re enrolled in the national health system, which is enough. And – I have to say this just one more time – it is free.

Yes, we pay taxes. But our personal income tax rate here in the UK is surprisingly similar to what we’d be paying in the US: 23.4 % as opposed to 20.7%.[i] A difference, in other words, of less than 3%. It’s worth pointing out, too, that while the UK spends 9% of GDP on health care and covers every individual in the country, the US spends almost twice that on health care – 17% of GDP – but, even with Obamacare, still fails to cover 10% of the population. (This has something to do with US doctors being paid per number of tests they run and US drug companies wielding a lot of power, in a way they do not in the UK. Thus endeth my economic analysis, but if you want to read more on the topic, the Kaiser Family Foundation provides helpful and in-depth information.)

A friend of mine here in Durham, a physician who works for the NHS, had this to say recently: “I’m really proud of the NHS. I love it that it covers everyone, that I can treat any patient who walks through my door with exactly the treatment I think she needs without worrying about whether her insurance will cover it – whether she’ll be able to afford it. It gives me real freedom as a doctor. And it works for the best interest of my patients, too.”[ii]

My friend went on to describe colleagues of hers in the US, who have to scramble around looking for alternatives for some of their patients – looking for second- or third-best treatment choices – because those patients cannot afford the best option.

This is LITERALLY how happy I felt
when I heard that my white blood cell count
had gone up again.
It reminded me of my own experience in the US, when I was going through cancer treatment. Early on, my oncologist at the University of Wisconsin Health Center (UW Health) told me, “We’ll need to watch your white blood cell count as you go through chemo. It can really take out the white blood cells.” Indeed, it did. After my first round of chemotherapy, my white blood cell count dropped so low, I couldn’t get my second round of chemo on schedule. I had to wait an additional week, to get the white blood cell count back up. “But we don’t want to keep delaying your treatment like that, with every new round of chemo,” my oncologist cautioned. I’d need a new drug, to boost my white blood cells, the day after each chemo treatment.

But what was the price tag on this magic, much-needed drug, called Neulasta? Well, it came in the form of an injection. I’d need 5 such injections, from start to finish. Even with the price that Dave’s and my insurance company had negotiated, each cost injection cost $2,500.

My kind doctor in Wisconsin took the time to look this information up for me, while I sat in his consultation room. I remember him being very distressed on my behalf. I remember him and his nurse doing just what my NHS-employed friend described of her US colleagues: scrambling around on their databases, trying to find an alternate, less-expensive solution.

The best they could come up with was this. My doctor could write a Neulasta prescription for me, and I could buy it (at a lower cost) from my local pharmacy. Then I, or one of my loved ones, could administer this shot at home.

When I first heard that this was our finest possible solution, I felt mildly hysterical. I mean, if you know either Dave or me even a little, you’ll also know that giving ourselves or each other shots is about as far outside our bailiwick as launching our own flight to the moon.

Dave and I, summer 2014.
Dave, bless his heart, read up on the subject. He reassured me that it would be fine. And, despite much fear and trembling on my own part, I soon found that Dave was an excellent giver of shots. It became one more bonding moment between us in the long, strange journey of treatment for cancer.

But what happens to cancer patients in the US who can’t afford even to buy the Neulasta shot for themselves? What happens to cancer patients in the US who don’t have a loved one who is willing and able to jab the needle into their arm?

When I was first diagnosed with breast cancer (and, to be fair, still freaking out), the social worker in the oncology ward thought I should be hooked up with a “buddy.” Someone, in other words, who lived locally and who’d had a similar diagnosis – who had already been through the same treatment I’d have. Perhaps because the database in Wisconsin was relatively small or perhaps because the exact kind of breast cancer I had was somewhat rare, the social worker struggled to find an exact “match” for me. When she did, the woman I spoke with, over the phone – my new “buddy” – was a 70-year-old living alone outside Milwaukee. Her name was Pat, and she was nothing but kind to me. But I also realized, by the end of that phone conversation, that while Pat’s initial diagnosis had been the same as mine, everything else that followed was about as different as two people’s experience of cancer treatment in the developed world could be. In short, I think she was a woman with few resources, personal or monetary.

Q: How could I could look happy,
in the
midst of chemo?

A: In large part, it was because I had my friend
Janet Thielke with me, making me laugh.
Pat had no one to take her to her chemo treatments. She traveled to them by bus or a taxi, and she sat through her treatments alone. When she was home, she was also alone. She remembered feeling cold all of the time. “Get yourself a nice warm wool hat to wear in the bed,” she said to me. “But even then, you know, it seemed like I still was cold.” Over the course of her chemo treatments, Pat became so run-down that she had to move in with her daughter, “and we don’t get along very well.” Surely the people in charge of this “buddy” system would have encouraged Pat to be comforting when she spoke to me. But she seemed to have little comfort to offer. To sum up, she said, “It was a hard time for me. But I’m sure you’ll do better, honey.”

I did, thank God, do better. I did much better. But I was lucky in many ways, not the least of which is that I came to cancer already equipped with the resources that would help me get through it: a regular, decent income; adequate insurance; a good baseline of health; a wide and loving community.

I think of Pat now as someone who, though she’d made use of the US healthcare system, had in some ways fallen down through its cracks.

But what of my own recent, somewhat unsettling experience with the NHS – the postponement, last month, of my surgery? It could be argued that the healthcare system of the UK has let me down, too.

When I learned of my surgery’s postponement and started telling others about, my friends in the US were at least as astonished as I. Some seemed to be even enraged. (We’re used to paying a lot of money for healthcare, and we think we should get what we pay for.) My UK friends, on the other hand, were all very sanguine about it. “Of course you’re disappointed,” they said, kindly. “You get your adrenaline up for the event, and then you have to come back down.” But it happens, they said; they weren’t very surprised. Some of them spoke from experience. “It’s because it was winter,” they said of my delayed surgery.

It seems there is limited bed space in the NHS hospitals, and in the winter, when the older population is at its most vulnerable, those beds tend to get filled up fast. Another friend of mine, who works in public health here in the North East, explained that no patient is released from the hospital until a team of healthcare providers have assessed the patient together and determined that she can leave in a healthy way. This assessment is not just about the patient’s physical condition but also includes the network of social support she’ll have back in her home territory. Elderly patients in fragile health won’t be returned home until it’s certain that they’ll have a local home health nurse available to pay daily visits, and a local social worker to ensure that the patient’s living conditions are safe.

Dave's and my street, here in Durham.
As a result, my friend said, all non-emergency cases take lower precedence during the winter months, and sometimes get pushed back a bit.

I never called Pat, my breast cancer “buddy” from outside Milwaukee, after that first phone conversation. I found her, through absolutely no fault of her own, to be too depressing for me. But I’ve thought of her fairly often since then. I think of her again now, as my thoughts return to the Durham  hospital, just up the road – as I think of entering its doors next Wednesday morning, Lord willing and the creek don’t rise. However many hundreds of elderly, unhealthy people that hospital took care of throughout our recent dark chilly winter, I hope many of them are safely home now. I like thinking that, here in Durham and its environs, those people have more and better resources to comfort and sustain them than a wool hat they might wear to bed.

[i] This is the average amount of federal and payroll taxes for a single-earning couple with no children.
[ii] On the flip side, UK doctors receive no remuneration or reward for prescribing additional treatments or tests. So, as my NHS-employed friend pointed out, you don’t see or fear physicians “milking” a patient with slews of procedures that aren’t necessarily needed.