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Guest Post: Nor Shall My Pump Sleep In My Pocket

I'm traveling again today, but thanks to the musings of my type 1 friend across the pond, there's something popping up here on SUM today.  Actually, I love this guest post, because Tom Hrebren gives a Brit's-eye-view of the American health care system, and it surprised me a little bit.  And he opens with a little William Blake ...
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Tom of Brighton.  Not Maine.These feet (ulcer free) walk upon England’s mountains green. Albeit in not so ancient times but the present times and unlike those mentioned in that hymn which is an anthem to public schoolboys such as I; they still carry me from A to B unlike the feet of Mr William Blake who now spins in his grave thanks to me hijacking his hymn.

Kerri has graciously invited me to do a little waffling here thanks to a few choice comments of mine on a link she posted on Facebook in relation to her post “Need vs. Want”. She doesn’t know what she’s let herself in for. (Cue evil laughter.)

I’m here to give an Englishman’s, therefore an NHS patient’s, views on the care received by Americans.

Where to begin? Well, I suppose that I had best start with the quality of care. Here in the UK, where you live very much influences the standard of care that you receive from the nearest hospital to you. it’s called “The Postcode Lottery.” I myself have been a victim of it. My paediatric care was shocking. However, I am still under the same adult team at the same hospital yet my care is now fantastic. There are five DSNs (diabetes specialist nurse) for all the adult patients and two consultants. The two consultants have both cared for me and have been wonderful. The nurses are damn good, too. Compare this to the paediatric service: At the moment there is one dire consultant under whose care I was once under. There is one paediatric DSN who has to split her time between that hospital and its sister hospital. She is also abominable.

In America, where you live seems to have little or no bearing upon the standard of care you receive as you can pretty much pick and choose who you see. If you want to do that in the UK, you have to get a referral to the team which you want to see. This is now much easier under Patient Choice than it used to be. Many parents of kids with diabetes that I know are referred (not without struggle) to Professor Hindmarsh and his team at University College Hospital, London, or other centres of excellence such as Leeds. This is because the care in their local area is dire and totally unsatisfactory.

Technology is my next one. Many more type 1s in America are insulin pumpers than there are in the UK. This is because it seems to much easier in America for a consultant to get the insurance companies to hand over the cash for pumps and CGMs. Here in the UK it is vastly different. Pumpers such as I are fewer in number. Many have to fight tooth, claw, and nail to get them. This is for many reasons; number one amongst those is the interpretation of the NICE (National Institute of Clinical Excellence) guidelines on insulin pumping. In essence, if a consultant states that you are suitable for a pump and would benefit from it then by law the PCT (Primary Care Trust, an organisational unit of the NHS, soon to be abolished) has to pay for one. It’s all nice in theory, however in reality it is much harder as PCTs have been known to put pressure on consultants as they don’t like paying for them due to the costs of the initial outlay and maintenance of a pump. That’s the second reason. Thirdly, consultants can be positively anti-pump and their interpretations of the NICE guidelines can be horrible.

Money, something that everyone understands easily. As an NHS patient I pay nothing towards my care directly. It is all paid for in my taxes. Americans are obliged to pay for private health insurance. Here some people choose to go private as they can afford to do so. Americans are obliged to. Sometimes the accountants seem to know what’s best for you, at least it feels like that. My major bone of contention is test strips for my BG meter. I get three hundred per prescription. This was upped last year from two hundred and fifty. When I suggested that to my GP (general pillock, whoops, practitioner I mean) she mentioned money and it being very expensive. Almost as if I was asking her to pay for my treatment herself. She gave in at the end. Had she put up more of a fight I would have asked for her to compare the cost of having me blue lighted to A&E by ambulance owing to DKA or an unnoticed hypo because I had run out of strips and the admission A&E, possibly HDU and ward after A&E. That usually gets the buggers. However, I will happily admit that the care I receive at the moment is the best that I have ever had.

That said, ultimately you get what you pay for. If an American can’t afford a good insurance deal then they ultimately get substandard care which never fails to shock each time I hear a horror story about health care in America. What is nice to know is if I ever need to roll into A&E I will never be asked to provide my insurance documents. I have been told hair raising stories by former colleagues who have holidayed in America and been forced to fall onto the hospitals there.

How am I to end this before I drop into the “I’m going to rant all night” mode? It’s a sad note for me to end on but from what I understand and what I have learned of American health care over the years it is more of a profit generating industry. It seems to revolve more around the money than the patient than the NHS does. I fully understand that the NHS has its own financial issues, however, they are in different areas and sometimes less prominent. I’m glad that I pay for my health care through my taxes as then the government is the only person shafting me. To my mind the government is more accountable than a health insurance company and less likely to try rob you blind. I would hate to have to fight against a commercial giant. I just have to fight against a government, the playing field is more level and I find that I can use more back doors than I suppose I would if I were tussling with a private company. It’s pitiable, at least in my eyes, that something which is so vital to every person on the planet seems to be so greatly orientated by money.

I’ve not covered everything as if I had, you’d be here well into the next century. Please don’t get me starting on overhauling the NHS as I have been known to go a bit mad at times …    
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Tom offered up his own bio, which I loved, and didn't want to change a word of it because something about "I start scaring people in September" sounds awesome.  Note:  He doesn't link to a blog, his Twitter account, or anything else social-media-y.  He's a true trailblazer.  :)

Tom's Bio:  What is there to say? My name’s Tom. I was diagnosed in August of 1996 (records have it as the tenth of that month). I’ve been pumping a year. Currently living in Brighton but soon to move to Oxford to become a student nurse, I start scaring people in September. I haven’t quite got a favourite tea, more a favourite beverage quite local to me – Harvey’s Sussex Bitter but I take my tea white with four sugars (twenty grams of carbohydrate). I apologise for the photo. It’s from my leaver’s ball at college and set the standard of photos of me for the next two years. I’m drunk.

Comments

It's very interesting to read an article about our own health service written for those of another nation.

Tom is correct when he talks of the Postcode Lottery. My wife and son, both type 1 diabetics, have brilliant support yet we live within 25 miles of Tom.

I have no idea how this works in America of course, but the biggest issue, particularly with my wife's treatment, relates to multidisciplinary care. With the NHS broken down in to various agencies it is next to impossible to obtain treatment when you require specialist treatment from various teams.

I am thinking in particular of my wife who is not only diabetic but has an eating disorder which has involved insulin omission.

We found that the medical team, i.e. the diabetic team were amazingly supportive and very focused in obtaining the treatment required by my wife.

However, the mental health team would often refuse to enter in to discussions with them and treatment was effectively refused for a little over a year during which time my wife's condition became very acute.

When I was arguing that the principal of the NHS, since its establishment, was free treatment for all I was rather pointedly told by the mental health team that "it doesn't work though, does it!?"

I agree with Tom I much rather have the system we have in the UK however I would echo the point that treatment can range from ground breaking, brilliant and efficient to dated, poor and detrimental to the patient. however there is little obvious reason for this other than perhaps the Trust it's self. Geographical location or the socio-economic breakdown of the area seems to have little impact for example.

On a postive note Tom is right Harvey's make a fine pint, I wish him luck with his study. Regards

I lived in London for 2 years (I'm Canadian) and was surprised that as soon as I had an address, I was on the NHS (even though I didn't have a job yet). I went to the local surgery and they referred me to a Diabetic clinic in a hospital nearby. In my experience, everything was first-rate on all fronts - the doctors, nurses, dieticians, ophthalmologists, etc. There is one thing that differs between my story and Tom's.

My first visit to the doctor resulted in all my prescriptions being written out and that included 400 strips. I took that to the pharmacy and they handed everything over the counter for free. If you have a chronic condition, the dispensing fee (of 7 pounds) is waived. After filling this prescription for a few months the doctor called and asked why I was using so many strips (~400/month). I explained how I found my control was much better if I tested 10-15 times/day. The doctor told me that the NHS would only pay for 100 strips/month and she cut me off. After that I had to buy ~300 strips/month over the counter for the remainder of my stay. I actually ended up cutting down on strip usage as a result.

In spite of that, I was totally impressed with the NHS. In Canada, the only diabetic coverage concerns I've ever had were around prescription drugs. Everything else is covered by government insurance similar to the NHS but in Canada I have to show my provincial insurance card every time I go to the doctor's office or blood lab but in the UK they never asked to see anything after the initial set up! In Canada, my employer's insurance has always covered my prescriptions and I can use as many strips as I want (dispensing fee ranges between $2-$5 depending on the insurance company). My only prescription issues occurred when I was self-employed and had to fend for myself. During that time I found a provincially-funded insurance plan that paid a fair portion of the prescription costs.

This was really interesting. Thank you so much for posting. It can be hard here when I feel like I am constantly fighting with insurance companies etc. and I forget that I am still very lucky.

alright Tom me ol'mucker? (can you tell we're old friends and have shared a few pints down the pub ? true story!) - great post and agree with you quite a lot. I've had to fight tooth and nail for my pump - so much so I was pretty much laughed out of one clinic. Yet at the same time I'm glad I pay for my care in my taxes every month and don't have to pay tons on insurance - I don't think I could afford to pay for insurance if the system was brought in over here :(

Many thanks for sharing a different perspective. As I've moved up and down the US east coast, I've experienced as many good doctors as horrible ones. It's mind-boogling to me that patients continue to frequent those bad doctors, but they do... As a pumper and CGMer, I'm still completely dependent on my Endo and CDE and 8 test strips a day. I'm profusely appreciative of the healthcare available to me thru my husband's employer. We might be paying thru the nose for the covereage, but that is a decision we made together. Having access to supplies and the doctors I've deemed worthy is more valuable to us than most things upon which our income might be spent. I do, however, frequently worry that American PWDs are simply "cash cows" and that if it were up to American major medical insurers and various corporations, there might never be a cure discovered because that would cut their profits too much... It sounds like that might not be a fear with your system... Perhaps it's our job, wherever we live, to work within our various systems to receive the best care, support and tools available. Tom, I'm glad you are pleased with your care, that you are now pumping (welcome), and wish you luck in the fall.

Sam and I have indeed shared a stoup of ale or three at certain establishments. Shame we timed it with a Southampton FC match! Neither Sam nor I would be able to afford any cover. I'm soon to be a student at the bio says but even on my current, hideous salary of £13, 652 per year I can't even afford to think about private health insurance.

Paul, perhaps one day you and I will meet and share a few pints of Harveys. Blue Label is my favourite.

JKH, I can see precisely where you are coming from there. God help us all eh?

I must end on a quote from a consultant Accident and Emergency doctor from Kings College Hospital who speaks about the NHS but more specifically the NHS "...It's not the money, money, money and the rush, rush rush. It's your friends and family and one minute they are there and the next they might not be."

I don't like either system, but I must say that because I have the best insurance coverage plan EVER, I'm pretty okay with America's insurance. My insurance covers 100% of diabetic supplies, and they only ask for a certificate of medical necessity if you're using more than ten strips per day. And even after that, they'll still cover everything. Their policy on CGMs is a little fuzzy to me, but I'm working on it!

I don't like that you can get screwed over for care just because of where you live in England. I mean, you should choose your home for the neighborhood, not the doctors, right? With us Americans, it's not like everyone gets excluded from good care-no matter which plan you have, you can still find a decent doctor if you look hard enough.

Yes, there are issues with both systems, but I'll choose the evil I'm already acquainted with, thank you very much.

Tom is completely correct about the Postcode Lottery here in the UK.
For example, when I was first diagnosed (at 16) I was put in the paediatric department, which was absolutely fantastic. However, I am now in the adult clinic, and that is another story altogether. The consultants are rude and one I met with didn't even know the difference between Type 1 and 2 diabetes (I mean really). There are the odd exceptions to the rule, and for those doctors I am grateful, but the one I have at the moment won't even entertain the idea of a pump (even though he runs the pump clinic).

Ok rant over. :)

On the whole I think we are very lucky that we don't have to pay for our healthcare, and as much as people complain about the NHS, I am grateful that my family and I do not have to worry about the financial repercussions of falling unwell.

Great post Tom! I'm Canadian, living in Québec, the health care system is much like in the UK. Soon they will be paying pumps too! I love the way health care is here, free for everyone...as long as you pay your taxes! lol

That was really interesting! For the most part I am very happy with my care here in America, but I do wonder at the high cost of medical care. I think since in the UK your taxes cover care there is more of a push in preventive medicine...I suppose to save money...but I still think that's the right end to start on. I also just went through a period of unemployment, and that is when getting insured when you have a chronic condition can get really scary. I would be so happy to not have to worry about that.

This is interesting. Great article, Tom. I am a Brit, now living in Singapore. When my husband was diagnosed with T1 in October 2001 we were living in Lewisham, South London - and his care was on the NHS. Appalling. I would hesitate to call it "care". Nobody seemed to care at all. On diagnosis he was issued with a BG meter, two insulin pens, a repeat prescription and told to come back in 3 months for an HBA1C. That was after the massive lecture from the consultant about "young people today and their lifestyles causing an increase in diabetes". I nearly hit him. But at least it was free. And we have had good experiences with the NHS - both our Dads got exceptionally good care before they died, as did my mother-in-law and my brother-in-law throughout their recent illnesses. So it's not all bad, and the UK is very lucky to have the NHS, with all its flaws.

We emigrated in 2003 (India first, where our son was born, then Singapore, where our little daughter was born) and our daughter was diagnosed with T1 two years ago, aged 2. Here in Singapore we get no insurance - everything is out of pocket. Thankfully my husband has a good job (as do I) and we can afford to pay for his and Isabel's care, two insulin pumps and all the supplies. I am eternally grateful that right now I don't have to battle governments or insurance companies to get what they need. I can just go and buy it, and we make our own decisions about which consultant to see, how many strips we need to use for Isabel, etc. I know that although we may have been able to get a pump for Isabel in the UK, it is highly unlikely that Bob would get one - despite the fact that since he's had his, his HBA1C has come down and his control is a lot better. I know that we are extraordinarily lucky to be in that situation and that so many people are not, and have to rely on insurance companies, big business and/or government-generated postcode lotteries for their care. It does seem wrong that that should be the case - but what is the best solution? On the whole, I think I would rather live in the UK and 'chance it' on the NHS, than in the US and have to battle big business with all the paperwork that involves. For now, we are very happy here in Singapore and able to withstand the huge expenses involved in order to be able to stay here - long may that continue :)

Bob would agree with you on the Harvey's bitter - he's a fan, too! And I love the bio. Says it all!

I loved reading this post. While I understand the NHS is not perfect, it does seem loads better than the American privatized healthcare system. For the record, I was totally on board with the Healthcare Reform recently passed (albeit severely watered down from what it could have been). What most Americans don't understand is that if you cannot get insurance through a group coverage, you are paying an arm and a leg for healthcare. And if you have a low salary job, such as mine, you'd go bankrupt just trying to buy prescriptions out of pocket. Anyhow, off the soapbox, it was really nice to get another perspective on healthcare, public and private! Thanks for the post.

I really, really like Tom. :)

This was so interesting! Thanks for your honesty and perspective, Tom!!

Well, good and bad health professionals can be found everywhere. The biggest problem in the US is that there is a 3-tiered system that no one will admit exists. The first tier is those who are either wealthy enough to pay for every exigency themselves, OR have jobs with good health insurance. I have been lucky enough to fall into that first tier because of my job.

The second tier is those who are literally destitute AND have children -- they get Medicaid, which covers their basic needs, but no "luxuries" such as pumps. Medicare folks also fall into this tier, although their coverage is better than in Medicaid.

The third tier is the destitute WITHOUT children, the unemployed, low-income self-employed, employed people whose employers offer skimpy-to-no insurance benefits and/or impossibly high deductibles, and those with pre-existing conditions whose employers have a "waiting period". The only coverage they get is life-or-death emergency care. EVERYTHING else is out of pocket, and they don't tend to be among those who even have enough money to pay their basic bills.

So in comparison, the British and Canadian systems may be far from perfect, but I would forego "luxury" care for some (like cosmetic surgery!) coupled with death and misery for others in favor of a system that covers basic care for everyone.

Not a problem. A privilege to write such a post for Kerri. I have my own D blog - http://diabetesdramasetal.blogspot.com/

Perhaps Kerri may be interested in doing something similar for me.

Dearest Tom,

I'm a 30-year-old T1 American just about to celebrate my 1st anniversary living in England. I enjoyed your post more than the average reader, I would expect, as I've experienced health care on both sides of the pond. There are pros and cons to each, obviously, but I much prefer the quality of care in America. I feel like there's a serious lack of communication between all health care entities here (GPs, specialist, the NHS, the chemists, etc.). It took almost four months to get my supplies and insulin. Good thing I packed six months worth in my suitcase!

At the hospital a few days ago, I was expecting to get hooked up with a CGM, only to be told upon my arrival that I was on a waiting list. After reading your post and several more on your own blog, I don't expect I'll be getting one any time soon. After all, there are only 26 insulin pumpers in County Durham (unless you count me and my pump from Atlanta, Georgia, who would make lucky number 27).

There are several posts about diabetes, health care here and there, etc. under the tag "Diabetes" (fitting, eh?) on my blog, if you care to read.

Congrats on making it into the pumping world. It's FREEING! And congrats on being your own best advocate for your care.

Cheers!

Hi, Tom! So nice to meet you. Really enjoyed your post on Kerri's blog. I read on your blog that you switched from Novolog to Humalog earlier this month. But no updates since. How are you doing? Hope things are going better.

"In America, where you live seems to have little or no bearing upon the standard of care you receive as you can pretty much pick and choose who you see."

Wow. Nice post but I am sorry to say, you are so wrong about this. Those in poor neighborhoods struggle for care. See, they cannot afford private insurance, and many are unemployed or employed in jobs that don't provide health insurance. They have to go to emergency rooms (driving up costs for everyone and possibly delaying help for someone having a true emergency), or go to a public health clinic if they are lucky enough to have one near, or do without. Our system is so, so unequal, so, so expensive and so, so wasteful

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