Us Health Care Costs

If you’ve read much of my blog you will know that I am from England where health care is free at the point of delivery, it is not free, people pay a tax so that when they really need health care they don’t have to decide whether or not to see a doctor and lose their house in fees or to accept that they will die earlier than they would if they could afford medical care. You will also know that when I got diagnosed with Hodgkin’s Lymphoma I was completely baffled by the US health insurance system with people talking about co-pays, deductibles, in-scheme and all sorts of other words and phrases I’d just never come across. Without my wife doing everything for me I couldn’t have navigated my way through the maze because, along the way I discovered that there were several billing mistakes which had to be rectified, and, wouldn’t you just know it, none of them were in our favor.

This week I got another shock from the industry known as U.S. medicine and health care. I saw my surgeon for a pre-op meeting so that he could ask how long I’d had my port in my body, prod it a couple of times, speak to the two trainee doctors who trailed around after him and then shake my hand. At the maximum he spent 8 minutes with me; his receptionist somewhat less and I’d already seen the guy who arranged the surgical appointment. I’d payed my co-pay when I was in his office and then, this week, I received an invoice for $485.00, the remainder of his fee after deduction of my $50.00 co-pay. The letter did threaten that “If this matter is not resolved in a timely manner, serious collection activity may be initiated:. Naturally I spoke to my insurance company but I ended up passing the phone to my wife as I couldn’t make head nor tale of what the insurance company wanted to know let alone what it had done simply because none of the figures they were giving matched with the ones I knew of. It turned out that the reason none of the figures matched was because the deal between my insurance company and my surgeon means that instead of receiving $485.00 from me he actually received just $90.00 from my insurer, that’s right, a reduction of $395.00!!! I find that amazing. Either he’s now working for next to nothing or his office has bloated the fee to a standard which is acceptable here in the U.S. To some extent it doesn’t affect me as I have insurance, but, if I didn’t have that insurance, I’d now owe nearly $500.00 when the physician group would have settled for less than $100.00. It seems reasonably obvious that one of the two main groups which don’t have medical insurance are the poor and unemployed and yet it would seem that they are likely to get hit with a bill almost 500% larger than the bill paid by an insurer. Yes, the U.S. clearly wants to take care of the poor and impoverished who have turned up on its shores.

I read and hear a lot about Obama care, and while I think it is better than nothing, it doesn’t go far enough. The U.S. needs to stop worrying about socialism in medicine, about government interference in making people take out medical insurance, it should, in my opinion, and I realize that I am only a guest here, move towards a system such as that in the UK, where people are taxed to pay for health care, surely the government can’t object to taxing its citizens can it?

The US Health Insurance Arrangements Suck

Those of you who read my previous blog will know that by now I should have had my chemotherapy port removed. Those of you who are astute readers may now be inferring that I still have it firmly in place and that this is so because of health insurance. My astute readers, you are correct.

From coming to the US the entire health insurance set up has been as clear to me as London smog. Co-pays, deductibles and so on were notions which were so alien to me coming from England with the NHS to which we all contribute and which is free at point of service. I always thought that to be a great scheme and think it an even better one now that I have experienced the US system. Since arriving in the US I have been on my wife’s health insurance, for which she pays a small fortune because, obviously, if I claim under it she is still working so the health policy won’t lapse, whereas if she claims under it for anything serious there is every chance that she might not be able to continue working and the policy would lapse thereby meaning that the insurance company’s responsibilities would be terminated and liability limited. In September I completed application forms for insurance through my employer and subsequently discovered that my insurance had been backdated which meant that we were not able to cancel the insurance I had under my wife’s policy as they require 3 months notice to cancel or some such. This has meant that I have had double insurance.

When I went to the outpatient center for my port removing this became a problem as the Center told us that they couldn’t accept the insurance under my wife because that wasn’t my primary insurance and we couldn’t use my own insurance because the doctor wasn’t on my insurance. The consequence is that the surgery was cancelled, I still have my port and now we are concerned in case this revelation means that the insurance we had used will now be cancelled retrospectively and we will be billed for the cost of things such as my CT scan.

American health care is good, the NHS is good, the difference is that people in the UK don’t have to sorry about how they will pay for health care when they are ill, neither do they have to spend hours worrying about which policy to select by trying to predict a year in advance just what health care they might need in order to find a policy which will cover them if that happens without having to pay out a large proportion of their income to cover events which they consider to be unlikely.

“I don’t think it’s the cancer I’m feeling.”

Those were the words of my oncologist Dr Taché yesterday before the start of my third cycle of chemotherapy. The suggestion is that, perhaps, what Dr Taché was able to feel, is the healing of the incision from my biopsy. It’s difficult not to get excited about the possibility that maybe, just maybe, the Hodgkin’s Lymphoma has been killed but the reality is we don’t know, and as Dr Taché was quick to point out we need scans to know what is going on. I suppose the lymphoma could have shrunk and be hiding beneath, or perhaps even within the biopsy healing, so at the moment I’m working hard at containing my excitement as I would prefer continuing darkness to a false dawn at this stage.

In the run up to yesterday’s appointment I’d been experiencing both daytime cold sweats and night sweats for the previous four or five nights, both of which I associate with the onset of the cancer and its development from Stage 2 to Stage 2B. In addition I’ve had sore throats and tightness in my chest, coughing when breathing deeply or encountering cooler/moist air. I’ve also been feeling shaky several times a day, and from time I’ve been getting hand tremors: it’s this last which I’ve had most difficulty in accepting with any degree of calmness. So to find that maybe, just maybe, the lymphoma has gone may be a great relief, but only if it actually has. Anyway Dr Taché’s office is now involved in the usual discussions with our health insurance provider to get approval for the scans, and so there’s the tension of will they approve them or won’t they? Clearly time is of the essence as I need to have these scans done and the results evaluated and back with Dr Tache within a fortnight and I know that the last time we went through this it was touch and go. Of the scans the most important is probably the one which will reveal any damage to my lungs from the bleomycin as there is the possibility that the cough etc are the result of damage from that drug. If there is excessive damage then the bleomycin will be dropped from any future treatment – hence the need to get the results before the next infusion. It won’t be replaced by any other drug. The protocol says to just carry on with whatever other drugs are being used so that will be AVD instead of ABVD.

How do I feel about all this? On one level I’m trying very hard not to feel anything in case it turns out that although the lymphoma has shrunk it is still there in hiding, or that the sweats indicate that it has metastasized and we should be looking somewhere else, in which case the treatment may not be working and we might have to change treatment which I think would be a huge blow to my moral. On another level I am desperate for good news. I know that the infusion before this one has caused me to react more strongly than any of the previous ones and I therefore want to believe that it is kicking the lymphoma as hard as it possibly can, but, another part of me thinks that maybe, just maybe, the lymphoma is fighting back and causing the effects rather than them being side-effects of the chemo. I don’t know what to think really. Maybe I’m like a young child on Christmas Eve, knowing I’ve been good all year and hoping that I’ll get that brand new shiny bike from Father Christmas but aware that it costs a lot of money and that not all little boys can get everything they really, really, really want just because it is Christmas.

Fingers crossed!

NHS V Private Health Care

I’m English so I’ve been able to rely on the NHS, which, much to the surprise of many Americans I have spoken to is “free at point of service”. This doesn’t mean we get it for nothing, oh no, no, no. We pay a National Insurance contribution from our wages which means that when we need a doctor we go and see one or alternatively the doctor comes to us. It means that when we need a hospital we go to one. It means our medication and drugs and scans and tests and a whole battery of other things are paid for already because of our National Insurance contribution. It also means the unemployed are covered to the same level as everyone else

Over here, in the US, it is different. If you work for a good employer you may have an excellent health insurance package. A less good employer and a less good package and so on, but many people have no medical insurance at all and this causes fear. Even people with insurance policies are terrified of losing their home because of the size of the bills which very rapidly mount up. If you are too ill to work then you’ll lose your insurance through your employer just when you need it.

In England the parties are coming together to fight the proposed changes to the NHS, and with good cause too I think. For those of my friends in the UK who are in any doubt whether the NHS should be kept or privatised please read this blog by the wife of a cancer patient who, with colleagues, left his job as a matter of principal. For those of you who may not read it I’ve copied the horrifying bit below:

“He’s going to die from this, all because he quit his job almost 5 years ago. If he hadn’t walked out, he’d have insurance. He could have seen a doctor when he noticed something wrong. He wouldn’t be going to die.”

Please read the comment from nadeaucaron which explains just why her husband finds himself in this position.

If this had been happening a year ago.

Something made me think, last night, about how different this entire cancer experience would have been had it happened twelve months ago.

A year ago I was living in England with my mother who was, and still is, suffering from both Alzheimer’s Disease and Dementia while sustaining a very long distance relationship with my fiancee in Florida. A year ago the process had been started for assessments to be made of Mum which would, ultimately, lead to her being placed in full-time residential care. I was working at a job which I didn’t find particularly satisfying, which, in winter, meant leaving the house before dawn and returning after dark. The pay was poor (though in line with other companies) and I did the job basically because it was undemanding, as I had little energy left to do anything after long sequences of broken nights and energy sapping arguments with Mum, who was clearly slipping into the other world of dementia.

Had the cancer been identified at that point in my life then I would have found myself having to deal with it in a very different way to the way I can now. Now, I can rely upon my wife, had I been living with Mum then she, my mum, would have been relying on me and there would have been no way of getting her to understand and remember anything about the cancer. Perhaps the situation would have speeded up the reporting and evaluation process needed for Mum to go into care but these things seem to have a life-cycle all of their own, and I can’t say that I have any belief that things would have progressed more quickly on that front.

From what I understand, the treatment for Hodgkin’s Lymphoma is pretty standard, which, I presume, means I would have been prescribed the same course of drugs and infusions in the UK as in the US. One of the instructions which goes with that treatment is that I shouldn’t mix with groups of people, e.g. in a theatre, as the chemotherapy drugs will suppress my immune system. So, it’s very doubtful that I would have been able to continue working, particularly as my journey to work involved a peak time commuter train in both directions as well as a tram ride. Then there would have been the difficulties of working with groups of people, shift rotations of staff and an appreciable number of visitors to the site as well. It seems pretty obvious that I would have had to leave the job as being, physically, not capable of doing it. This would have left me without an income. Mum going into full time care would have left me without a home, so I would have had neither home nor job. Not a great prospect!

I am sure my daughters would have given me all the support, both physically and emotionally, which they could, but they each have their own lives to lead and family commitments to meet, as well as working themselves.

Instead of all the above problems I’m being looked after by my wife who is the one who goes to work and is making no real demands upon me other than that I put my energies into recovering as quickly as I can.

The only downside is that in the UK my treatment would have been free under the NHS, whereas here, in the US, we have to pay for every visit and every treatment.

It may seem strange to say it, but, I think I am a very lucky man for a number of reasons:

• I have Hodgkin’s Lymphoma which, statistically, is unlikely to kill me;
• I have a home and the love of a really good woman;
• I have the love and support of my daughters;
• I have the support of friends;
• My wife’s job includes health care which minimises the costs borne by us though they are still substantial.

Another change in diagnosis!!

Well the results of the second opinion by Dr Jaffe of NIH Maryland were back with my oncologist Dr Jason Tache today when my wife and I arrived for my first chemotherapy infusion. Dr Jaffe’s opinion is that the cells previously identified as +20 are actually -20, which meant that my oncologist, Dr Jason Tache, decided not to include the Rituxan in my personalised cocktail of chemotherapy drugs aimed at killing this cancer as quickly as possible. The diagnosis is now Lymphocite Rich Calssic Hodgkins Lymphoma, so I’ve gone from having a rare cancer to having the second most common – I suppose that’s good news – well probably. The less good news is that I’m now classed as stage 2B lymphoma rather than 2A. From what I’ve read and been told this isn’t really likely to make any difference to my treatment or recovery. The significance of the change of diagnosis to Lymphocite Rich Classic Hodgkins is that Rituxan wouldn’t make a proven improvement to the chemo cocktail but would have side effects, so, the logic goes, why impose potential side effects when there is unlikely to be any gain? This position means that Dr Tache could not, in conscience, use the insurer’s approval for eight treatments at a cost of around $8,000, and presumably thought that if he were to do the professional thing and notify the insurer of the change of diagnosis, then the insurer would cancel the authorisation. Do I trust Dr Tache’s diagnosis? Yes, absolutely, he strikes me as a very knowledgable and professional man. That level of trust was supported by the comment of one of the nurses that the doctors at this particular centre are world class. That’s certainly good enough for me!!

So, the chemotherapy itself went well. The nurse who worked with me was Lisa Doyle-Frank and I cannot commend her enough. She was friendly, supportive, professional, available and informative. Lisa was there the second that I showed any sign of needing her and very willing to leave paperwork to come and support me. Lisa was also really good at giving my wife information. Not to leave out the other nurses in the chemo room, I just don’t know their names – they were all very friendly to me and the other patients who pass through the room on their way to good health. There is a feeling of professional enthusiasm and good humour in the room which was tangible from the moment I walked in, and believe me, that atmosphere feels very good and is very, very reassuring. The relationships between patients and nursing staff were obviously excellent and I felt very secure.

Lisa approved of the quality of work performed by Dr Todd Schwartz, the interventional radiologist who implanted my “port” that comment was also very reassuring! After watching Not as I Pictured: Lymphoma and hearing the comments of John Kaplan about how painful the hook was as it was pushed through his skin and into his port, I was expecting the worst, but it wasn’t at all bad. Yes, I felt Lisa push it in, but I have to say I’ve had more discomfort from IVs pushed into a vein. Lisa started off by giving me a sedative just to relax me and boy did it work! All I wanted to do was sit back, close my eyes, and bring on the rest of the treatment! I wasn’t out of it by any means and I was able to join in the conversation when I wanted to, but I was very, very, very relaxed. After that came a test sample of bleomycin, just to make sure that there was no reaction. After the rest of the drugs were administered through the drip into port there had been no evident reaction and so Lisa gave me the rest of the bleomycin dose. After that we were done, a quick chat with Dr Tache to let him know that my wife had spoken with the insurer today and they had confirmed approval of the Rituxan should he at any time change his mind and decide it should be incorporated, and we were done. The advice from Dr Tache was to eat soup just in case I should suffer nausea. The advice of my wife’s pediatrican friend Henry, who has survived cancer himself, was that I should avoid eating my favourite soup! No, I don’t want to explain why he gave that particular advice!!! Anyway we decided that, before my immune system gets suppressed, we would have one last meal out so it was soup for me at Denny’s, and very enjoyable it was. During the “meal” I wasn’t sure whether or not I felt nauseous because of the chemo or because my stomach was empty after not having eaten for around 10 hours. Happily it turned out to be the latter and, so far, I’ve not been nauseous. Lisa thinks there is a good chance that I will not be nauseous at all and I want to believe Lisa is correct! Actually Lisa did say that it is often the second day after treatment that nausea hits but another lady in the chemo room said that it’s usually Saturday when she feels nauseous after a Tuesday infusion, so, I guess, it’s just a case of wait and see and hope the anti-nausea pills I have for the next three days will work and I won’t need to start using the back-up pills for the week afterwards.

Anyway it’s been a long day and midnight has just slid past while I write this, so I really ought to take the first of my pills, which may make me drowsy, and take myself of to bed – to dream perhaps!

I Will Get Rituxan

Today’s task was to track down the person who would be making a decision about whether or not I am to receive rituxan. It sounds a simple task doesn’t it? Mmmm I thought it would be too but, I’ve been wrong before and I’m sure I will be again. My first problem was in navigating the menu with Cygna. It seems my ID doesn’t include the last two digits, but, of course I didn’t know that so it took several attempts to get through to a real person. Eventually I was put through to one lady who clearly failed to grasp what I was telling her – a request for an off-list drug, rituxan has been made by my oncologist, it won’t show on your system because the request is, or at least was, being evaluated, so can you transfer me to the people who will be making that decision please? No, that’s no good apparently. It seems that the system works if I have a battery of numbers which the doctor’s office provides to Cygna and without which the lady to whom I was speaking couldn’t help me, though she did tell me she would try to connect me with someone who could and then put me on hold. When she hadn’t come back to me after around 20 minutes I did the obvious thing and rang off, after all, she had my phone number so she could call me back, right? Wrong! No return phone call. I then phoned the doctor’s office where Sheena was able to tell me that they still hadn’t had approval and the request was still with “clinical review”. These two words were clearly magical and could convey in an instant the department to which I needed to speak – eternal optimist me!

So, armed with the phrase, “clinical review”, I called Cygna back but this time took a different menu option and spoke with Tammy (Tammi?) who was really helpful, understood what I was saying, what I wanted, and set out to put me through to the person I needed. Really helpfully, Tammy kept coming back to me to let me know that she was still there and still trying to help. (The downside is that the beeps I kept hearing on the phone and which I thought were Tammy trying other phones turned out to be my stepdaughter calling, but I didn’t find that out for a few hours!) Eventually Tammy was able to transfer me to Brandy who grasped things really quickly, knew that she wasn’t the correct person for me to speak to as I needed the “injectible department” (I kid you not), and transferred me to Angelina who was the correct person to talk to and who was able to resolve things for me very quickly by liaising with someone and asking me a couple of simple questions i.e. is this a new treatment or a continuation and is the treatment at a hospital or the doctor’s office? Such simple questions that you might have thought the paperwork would have covered them, but, clearly not. Anyway, armed with my two answers, Angelina was able to complete the liaison and came back after only a few minutes to tell me that the request had been approved for eight treatments and confirmation would be faxed to my doctor for me for Monday. Like my wife, I can’t help but wonder whether this would have happened had I not phoned. Anyway, thank you, Tammy, Brandy and Angelina – you really were very friendly and helpful.

That apart things seem to be going ok. I’ve had a couple of nights of good sleep without the night sweats and I feel much less tired which is great.

Last night my wife and I watched a documentary “Not as I Pictured: Lymphoma” a film by John Kaplan who is an award winning photographer. The film tells the story of John’s own journey and is very, very involving. There were quite a few things in it which struck home to me, but one of them jumped out today when I accidentally touched “my triangular lump” which John said he was reluctant to do. I think I can understand why – it just doesn’t feel natural! Well, obviously, you might think, but the skin just doesn’t feel natural over it either. The other things he said about the port were that although the doctor gives some cream to numb it there is still pain when what he described as “a meat hook” is pushed through the skin and into the port. Mmmm, now there’s something for me to look forward to on Tuesday!

Is cancer cuckoo?

If you’ve read any of my earlier blogs you’ll have picked up on the facts that I’m an Englishman in America, have Lymphocytic Classic Hodgkin’s Lymphoma (well, probably, that’s what I have) and that, without the assistance of my wife, I’d be lost in this maelstrom of insurance cover, co-pays, insurance authorisations, private hospitals, doctors’ offices and so on. The more of this I experience the more I appreciate the NHS and its simplicity. Today has, once again, reinforced that appreciation.

It’s now a full week since I last saw my oncologist at which time he, or his office, were to request that my biopsy be sent to Washington for a definitive second opinion and were also going to get clearance of from my health insurer that the drugs programme would be within policy – or whatever the phrase is. I’m a US Health Insurance virgin and am beginning to feel that, rather than losing my virginity to someone I will remember all my life, I’m being heavily mauled by a biker gang prior to sexual assault. It’s not the fault of my insurer, they’ve responded relatively speedily to every request, well, with my wife chasing them they’ve not had much choice but to be speedy. It’s just that the system is so seemingly random with nothing being co-ordinated anywhere along the line by anyone other than us, and by ‘us’ I actually mean my wife who has taken on the burden of chasing all of this up and keeping on top of things. It’s a destructive and brutalising battle for her as she wants to give me time and support, and, indeed needs time to recuperate herself and deal with other issues in her life, but instead her time is often taken up in conversations with the insurer and with doctors. Today, a week after seeing my oncologist, it turns out that the results of the biopsy have yet to be received by the oncologist’s office from Washington where they were sent for a second, or third, or fourth (depending upon how you define these things seemingly) opinion, at least we were told a week ago by the hospital that the request had been received from the oncologist’s office. Will the opinion be back before I start treatment next Tuesday? Who knows? The next fly in the ointment, though it’s not ointment and the thing which is in it is far, far too big to be a fly, is that the insurance company hasn’t yet authorised the treatment. After several phone calls my wife seems to have been able to track down the reason that there is as yet no medical insurance approval: one the drugs (I think, rituxan) has yet to be given FDA approval and so the request will sit with a different department within the insurance company. We are now back in a position of racing time for the treatment to start, although the doctor’s office assures my wife the remainder of the cocktail will be given to me on schedule even if there is no approval for redoxin. Will the results be back in the next three working days? Will three working days be sufficient for the doctor’s office to send/re-send the information to the insurance company, deal with any queries which the insurance company might wish to raise and still get a positive response from the the insurance company? I don’t know, and the really scary thing is that no-one can tell me. Should I be concerned if there is a further delay or not? It’s human nature to worry about this sort of thing isn’t it? I mean, after all, I have something growing inside of me which is feeding off my body and which is intent on killing me. It’s a little bit like being a bird which has a nest full of eggs destroyed by a cuckoo and yet has to go on feeding the cuckoo. It’s all very well to tell me “It’s a slow growing cancer”. While it is good that it is slow growing it is not at all good, perhaps even fatally bad, for me that it is growing at all!!

Unlike the bird unable to distinguish the cuckoo from its own eggs and chicks, I am all too aware of this cancerous mass in my neck, of the still red scar from the biopsy, of the incisions for the port in my chest and the triangular mass of the port itself, of the resistance in my neck every time I turn my head to the right. It’s hard not to be so aware. Whenever I touch my neck I feel the remainder of the cancer mass, when I wash I see the still raw marks on my chest from the insertion of the port, I put my hand to my chest in an habitual movement and pull it away quickly as my fingers encounter either the enlarged vein where the “pipe” has been placed, or the mass of the port itself. When I awake in a morning I can feel where the unhealed wounds for the port have rubbed against the bed-sheets. On top of this my symptoms seem to be progressing. A short while ago I listed symptoms and mentioned that I seemed not to be having these: well things are changing. I’ve gone through a period where my feet itched badly at night and I’m now getting night sweats most nights. On top of that I tire very quickly. For instance yesterday I visited the educational center at which my wife works, to say my farewells to some of the students I have worked with down the years who will have left education and moved, hopefully, into gainful employment by the time I am next able to mix with groups of people. I also wanted to say “see you later” to the other students whom I will, hopefully, see in six months or so. It’s important to say these things so that these students know that I haven’t just turned my back on them and walked away as many others have done in their lives. The class teacher has worked hard to build a feeling of community, family if you will, and one doesn’t just disappear from a community without a goodbye. I really did nothing physical at all, interacting slightly with a group discussing friendship in the morning and then for perhaps thirty minutes in the afternoon at the party, but when I got home I went to bed and slept for two hours.

I was very touched to discover that I was guest of honour at the monthly birthday party, and that some of the students had written me good luck cards. I’m sufficiently egotistical to want to share some of the comments!

“I am sorry that you are sick. I hope that you feel better soon. Your wife will take good care of you. Take good care my friend.”

“I heard about your illness and I hope you get better soon. We love you.”

“I am sorry that you are sick. I wish that you feel better soon so that you can help us.”

“I hope that you come to see us soon because you are a really cool teacher and you showed us your really cool experiences. I’m glad you came kayaking with us and hope you come back soon.”

“I hope you feel better soon. We miss you.”

“I am sorry that you are sick. I hope that you feel better and come back soon. We miss you so much. Feel great.”

“I hope feel (sic) you feel better soon you are a nice man and we miss you very much.” This one is from the student who’d previously asked me if I’d been shot when I’d shown him the incision from the biopsy.

They really are simple words for the most part, but, perhaps, the more touching for all of that. Most of these students are simple people – not in the sense of being stupid, but, rather, in the sense of seeing things in an uncomplicated and simple way. All of these students have learning difficulties in some degree and I know that the effort which went into drafting and then writing their message and then their envelopes was much greater than the number of words themselves reveal, and that the time taken to draft and then write the messages and the envelopes was substantially longer than it took me, or probably you, to read them and record them above. What I can say, however, is that I’m sure the amount of time I give to remembering these words, particularly when I feel down, will match and possibly exceed the time given to me by the students. It’s good to know that you have touched someone’s life isn’t it?

NHS Part 3

A friend of mine in the UK sent me this link to an article in The Guardian “NHS plans for credit rating agencies to vet hospitals” – it’s an interesting article and well worth reading.

So, what’s it all about? Perhaps it is my own personal view of politicians being unwilling to accept responsibility but, it seems to me, that this is another one of those “we’re only responsible for the funding and not the quality of the delivery” moves. My guess is that we’ll see hospitals declared to be a financial risk by organisations which Joe Farrington Douglas (an Associate Fellow of The Institute for Public Policy Research) termed “key enablers of the financial meltdown” and then what? Surely the options after such a declaration are few and far between.
(1) The Government could simply say “So what? It is doing an excellent clinical job and we will fund it regardless of the financial risk as assessed by these bodies!” Yes, you can just see that happening can’t you?
(2) The hospital is closed, staff loose their jobs and patients have to travel to a hospital in another town or city. It has to be said this sort of thing has happened before and politicians have ridden out the storm, but then it’s generally just been a department that has closed, such as the stroke unit at Darlington. The headline in The Northern Echo is “Darlington hospital stroke unit closure ignites fresh row“, or residents of Rochdale being told not to go their own hospital in an emergency but to one in Bury, Oldham or Manchester.
(3) The private sector might just be invited to step in and take over the facility along the lines of “failing schools”. This extract from a NASUWT publication is, perhaps, an indication of the way things might also progress in the NHS
“Currently, in the state education service, the private sector is involved in:
• sponsorship of and direct investment in schools and their activities;
• the provision and management of local authority services;
• the provision of services for schools;
• Private Finance Initiative (PFI) and Public Private Partnerships (PPP);
• the management of state-funded schools – Academies”

So, which of these are possible in terms of NHS hospitals? Clearly sponsorship is a possibility. With that sponsorship could well come a specialty within the hospital, such as, cancer, or diabetes or pretty much anything else. Would that be good or bad? As with most things, it may depend, and we should perhaps not make a decision too early. It would, surely, be “a good thing” if there was increasing expertise within a hospital, but if that expertise came at the expense of a reduction in the width of other provision, say the Accident and Emergency facility, would that still be a good thing? Presumably it wouldn’t be a good thing if, like the citizens of Rochdale you have to take your injured child several miles further than you otherwise would, particularly if, as is often the case, time is of the essence in effecting a treatment. Paramedics are very well trained and do an excellent job but they simply don’t have the resources of a hospital available to them as they make the 5 miles journey along the B6222 on a wet February night. Maybe it would be the provision and management of the hospital services themselves, but, isn;t this already something that can happen? The provision of services for the hospital might well an alternative along the lines of “We no longer provide x-ray scans here madam, please take your child to the XYA clinic five miles away”. It sounds ridiculous doesn’t it? Maybe but that’s effectively what my wife’s health insurance policy provides for us. We can use an in-hospital facility but if we do then we are charged significantly more than our co-pay in an in-policy but not hospital facility down the road.

My guess, and that’s all it can be as I am certainly not aware of ongoing government thoughts on this, is that there will be two main possibilities, the first being that the hospital is simply taken over by another provider which charges the NHS for the services it renders, or that expensive services are contracted out and the hospital/NHS is charged accordingly. Is there anything really wrong in this? In one sense, no, there’s nothing wrong with it as might well enable a higher standard of care than the NHS is funded to provide at the present time, but in another sense, yes, there is something very wrong with it, and, until you’ve experienced the wrongness of being told you have a potentially life threatening problem and you should go home, consult your insurance company, the internet and then make an appointment to see a doctor, you probably won’t think of it, but believe me, that scenario is about as wrong as it gets. I couldn’t have done it – well I suppose I could but as a total novice in this system I freely acknowledge that I was out of my depth.

Something of a follow-up

This report by the BBC caught my eye yesterday. It seems to be clearly stating that the NHS got a bad report because only a limited data-set was examined! No-one seems to have been willing to stand up and criticise the original report. I wonder why?

Something more of a follow-up

Here’s a petition you might like to check out http://www.38degrees.org.uk/NHS-petition

NHS v Privatisation Part 2

A while I go I wrote about the controversy of privatising the NHS and I made reference to the financial implications of insurance which expects the insured to make, in American parlance, a “co-pay”. So, I went for a biopsy which naturally involved the surgeon, anesthetist, nursing staff and the use of the hospital facilities, so, naturally, you’d expect to make a co-pay wouldn’t you? The question is, how many co-pays would you expect to make for one operation? To my, naive mind (I’d never call it an innocent mind!) I’d have expected to make just the one co-pay of $40 but it seems it isn’t going to work out that way and the bills will be individual to make it easier for us to make the several co-pays.

Don’t let them dismantle the NHS and replace it with American style health insurance. The increased choice and competition you get seems to me to be more apparent than real, the problem is that those pushing the changes would most probably subscribe to the phrase “Perception is more important than reality” – now doesn’t that just sound like a typical government approach?

NHS v Privatisation

This is a real biggy isn’t it, especially with privatisation of the NHS being sold as a change from being a provider to being an insurer, or to put it another way, “We provide the insurance and it’s up to you what you can get from it”. Key to this will be the notion that this will put health care into a competitive market where the quality of provision is driven up and the cost is driven down – a bit like buying a new computer which costs less than you paid a three or four years ago and yet can do so much more. Well, my so far relatively short experience of a health market driven by insurers here in the USA might give the lie to some of these presumptions.

Let’s start at the beginning. My wife is employed by the local education department and the quality of the insurance provided by the employer has gone down year on year – one of her colleagues actually insures through her husband who gets his insurance from a private school employer because it is better and cheaper. The cost is much greater than NI contributions in the UK. There is a need to actually understand and interpret your policy and have informed discussions not only with your health provider but also with your insurer to make sure that your provider is actually on the approved list as otherwise it will cost more to see them, or possibly, if I understand this correctly, the insurance company will not contribute a cent. So, here I am an Englishman in Miami and diagnosed with possible cancer. Do I understand the health insurance? No, not really. Am I in any kind of mental state to start understanding it? No, not really as I’ve just discovered that I may or may not have something fatal growing inside my body. Luckily my wife does understand these things and has been able to check out who is, or is not in-policy and believe me it takes time to do that. If you ask the doctor’s office they may or may not be correct when they say they are or are not in-policy, if you check the insurer’s website for the “latest” updates you find that it may be the latest which has been posted but that it is not necessarily up to date so you still have to talk with the insurer’s office which, it seems to me is an unnecessarily complicated process especially when a discussion with two different members of staff can give two different answers. There have been times when my wife’s conversations seem to have lead to some kind of formula to the effect that the number of answers is equal to the square of the number of employees questioned. All this, by the way, was after we’d overcome the inertia caused by our initial Primary Care Physician (PCP) who was intent on sending us to some organisation with which she was associated despite being told by my wife that the organisation was not within policy. Not only do you have the problem of finding someone who is in-policy but you also seem to have your own specification for what that doctor should be able to perform. We needed someone capable of doing a biopsy on the swellings in my neck. A simple task you’d think wouldn’t you? Well, the ENT doctor’s referral turned out not to do them though there was someone else in the office who did do them but we’d have to wait until he came back from holiday, sorry, vacation! My wife then got involved in perhaps a dozen phone calls to other offices before we could find an oncologist (whose office confirmed that he did not do biopsies though it turns out he does actually do bone marrow biospies) and another doctor whose office told us that he did do biopsies of the kind I needed. A good job we mentioned to the oncologist who we were going to see as he knew that the other chap “is the same as me. He does what I do.” Had Doctor Tache not known this then we’d have wasted more time in going to see someone who couldn’t do what we needed and being charged for the privilege. Instead Doctor Tache called Dr Dumorney who agreed to see me the next day, despite that being a day on which he would not normally have seen patients, and a couple of days later he’d had me in surgery and carried out the biopsy. Suddenly, in Doctor Tache we’d spoken with someone who knew and understood the situation and could help to organise things and we’d discovered him more or less at random from a combination of his being in-plan, having good reviews on the web and being available to see me quickly. I could see the relief on my wife’s face as the weight or organising and driving forward my medical care was taken from her. The NHS does that sort of thing without even thinking about it but it won’t if it becomes an insurer, instead it will come to function as the insurance companies do over here – after all they are the ones who are being set up to make bids for the new look health services – and will presumably make comments along the lines we heard of “We can’t make a recommendation. You need to see who is available on your plan and choose from them”. So, it will be up to you instead of supporting yourself or your loved one through a serious crisis to make all the enquiries and co-ordinate everything and to spend your time on that instead of giving the love and support you want to give. Don’t get me wrong, my wife has given me all of that, but I know she has found it exhausting to do so, and I also know she wanted to give me more.

Next let’s look at cash. The NHS is free at point of delivery. How long is that likely to continue in a market where companies compete to offer a better quality service. You will discover that treatment A is available within the insurance provision but treatment B is available for only fifty pounds more while treatment C which is the most effective or in the best respected hospital or uses the latest imaging machine is available for only another three hundred pounds. What this means is that as well as doing the research, organising the diary, supporting your loved one, trying to do your job and find time for you to deal with the impact on you, you also have to start juggling the money when, quite frankly, there are more important things which you should be doing, like looking after yourself and your loved one. Although we have, so far, only been seen by people who or in-policy, or rather, on-plan, each visit has been accompanied by a payment from my wife and it soon adds up to a considerable sum. Let me tell you that quite frankly those who are on low incomes cannot afford the co-payments even if they were insured.

I’ve spoken with quite a few people over here about the proposal to introduce a private insurance scheme in the UK, and those people, including doctors, nurses, receptionists and the general public, have, unfailingly been shocked because they envy the UK’s NHS. They envy the ability of anyone in the UK to go and see a doctor when they need to in the full knowledge that the patient won’t have to wonder about the cost of getting treatment. One of my wife’s colleagues recently refused to allow an ambulance to be called for her when she was at work because if would have cost her $500, instead she drove to the hospital, in pain and a potential road traffic accident.

The Cost of Health

So, today we saw the surgeon, who, contrary to the information available about him on-line, was very helpful, very informative and very happy to spend as long with us as we needed. He’s arranged for surgery tomorrow morning to take a biopsy, though I suspect he may well remove as much material as possible at the same time so that any future chemical treatment has less to combat. On that basis I expect to come home tomorrow with a hole in my neck, a large bandage and lots of pain killers.

Once again I’m not sure how I feel about all this. On the surface I seem, and feel, calm, and yet this afternoon I found myself really snapping at my wife over absolutely nothing (and yes this is a public apology!), so, clearly, though the surface might be calm, there are swirling currents beneath and I’m not sure about their speed or depth.

What I did find difficult today was the physical distance from my daughters. Explaining something like this over Skype just isn’t enough. I couldn’t talk to my youngest daughter as she was out for the evening and leaving a message with her husband really isn’t the same thing at all – I’ve spent the past few hours imagining how she will feel when she walks in smiley and happy to be confronted by this. Talking to my eldest daughter was possible but it was hard to hear her tears when I am not able to physically reach out to her. What I do know is that both my daughters will be rooting for me and wishing they could actually pop round and visit to cheer me up but, that’s just not a possibility with 4,500 miles between us.

Today is the day on which the failings of the US medical health insurance process really struck me hard. Our insurance policy leaves us to pay 10% of the cost of doing this and I can only guess that it will get worse from here on in as, next up, assuming the biopsy shows cancer, is a specialist scan with radio-active material to check out my heart and then the injection of material directly into my bloodstream with the aim of killing the cancer. I am beginning to understand why people make the decision to forgo treatment for themselves in order to have money available for their children. It’s an invidious position and no-one should have to go through it.

Why does bad news often come at festive times?

I’ve often thought it strange how bad news, such as a loved one’s death, the loss of a job or serious injury, comes at a festive time, be that Christmas and New Year as now, another calendar event such as Easter, Halloween or Bonfire Night, or perhaps proximity to some family date such as a wedding anniversary or birthday, so that every year for the rest of your life as that event rolls around you are prompted to remember. This year the bad news for me came a week or so before the Christmas holiday.

A routine visit to a doctor for a check up. Routine in the sense that everyone should have one, far from routine in the sense that this is my first in a number of years and my first with a Primary Care Physician in America. It was going swimmingly to start with. Questions such as “What medication do you take?” were answered with “None” much to the seeming surprise of the intern asking the questions. I was tempted to think that maybe she’d never had anyone say “None” to any of her questions before let alone to all of them! Then the first hint of bad news when she moved her left hand back to take a second feel at my neck and said “You have a bit of a lump there”. “Yes, I’ve had it a long time, it comes and goes”, was my confident, almost flippant, reply. A short while later the doctor came in and homed in on my neck, saying the lump was about 3cm to 5cm in length. Mmm! Clearly this wasn’t the small spot I was thinking of! My wife began to turn pale. I’m not sure what happened to my face though I do remember thinking it was important for my wife that I didn’t look too worried. In response to my wife’s questions the doctor said at best it might be fatty tissue which had settled there but it might be something malignant.

Now, I’m new to all this, both the having cancer part and the dealing with the American medical insurance process, so I knew I would have to rely upon my wife for practical help as well as emotional support. The doctor suggested that we see an ENT specialist with an organisation which she recommended. My wife told her that that organisation was not an approved institution on our policy, and that the doctor would need to speak to our insurance provider before anything could happen. The doctor said she (the doctor) would need to put things in writing and would send a fax to the company she’d named. Once again my wife pointed out that the company was not on our approved list. The doctor went on to say that, depending on the ENT opinion it might be necessary to take a biopsy, and that, as they say, was pretty much it, apart from taking some blood and giving me the results of the EKG which seemed to suggest that at some point I’ve had a heart attack and not realised it. The PCP also wanted me to have a CT scan on my neck.

All of this happened late on the Thursday afternoon, a week before Christmas. My wife, being experienced in the ways of health insurance companies phoned ours when we got home to check whether or not the PCP’s suggestion were on our approved list. They weren’t. My wife phoned the doctor’s office on the Friday but was only able to leave a voicemail – no-one called us back. Before the end of the day my wife spoke with the insurance company again to ensure that they had received the information they needed from the doctor – they hadn’t. Saturday saw us in the doctor’s office where the doctor, somewhat glibly, told us that she had no idea what the insurance code was (our insurance company had asked for this when my wife phoned them) as her staff dealt with that so she couldn’t give it to us, but she would ensure the fax was sent to the insurance company. My wife again told the doctor that the company recommended by the doctor wasn’t on our plan and that the doctor would need to talk with the insurance company for things to move forwards. Saturday night came, more calls to the insurance company and still nothing had happened. Frustration levels were rapidly rising in our household. Not only did I potentially have life threatening cancer, not only were we trying to come to terms with the emotional side of trying not to contemplate my impending death a few months after we had married following a trans-Atlantic relationship of almost seven years, but we were also trying to understand why a doctor who was being paid to be my Primary Care Physician seemed not to be taking much action to ensure I got care. Sunday was a dead day so far as we were concerned. Monday morning dawned and the doctor’s office opened at 9.00 a.m. At 9.01 a.m. my wife was on the phone once more demanding that the doctor’s office make contact with our insurance company. The matter of contact was becoming more urgent as my wife had arranged a visit to an ENT specialist for Wednesday on the basis that my PCP would have given the insurance company all the information it needed and the insurance company would have had three or four days in which to complete it’s consideration of the position. The insurance company was now saying that it couldn’t guarantee having a decision, let alone an approval, in time for Wednesday morning. Tuesday dragged itself along. Contact with the insurance company was so frequent that staff there actually recognised my wife’s voice! The insurance company’s answer eventually changed from “We haven’t received anything” to, “We’ve received a fax but we need the PCP office to telephone us”. By now the PCP office was closed but the voice mail wasn’t so my wife again left a message. Tuesday morning arrived and saw us at the PCP’s office demanding that the PCP telephone the insurance company. The PCP was adamant that there was no need “They need it in writing and I’ve sent them a fax” was the sort of comment she was making. Eventually I started talking about negligence on her part and then, and only then, did she say she would make the phone call. Did we believe her? You bet we didn’t! We waited until she said she had phoned, and told me my blood tests were ok, and then we went home and phoned the insurance company to make sure they really had got everything they needed. My wife phoned them several times during the day to ensure that everything was being processed and eventually they gave an OK.

Wednesday morning saw me go for my scan. Once again pages of information from me – does no-one use databases over here? A really helpful technician who told us it might take twenty minutes or so before he would be able to give us a copy of the scans but did it in about five. He explained the report could not be made until later when the radiologist had reviewed the scans.

Wednesday afternoon saw us visit the ENT specialist who proffered the opinion that the multiple lumps were not really an ENT issue and recommended we see a hematologist who would be able to arrange for blood tests which would identify the now “multiple lumps” with my big one having grown to 5cm to 6 cm. So, depending on the accuracy of the two doctors, my lump might have doubled from 3cm to 6cm, or just grown a little bit, or perhaps not at all. The ENT specialist did suggest that although the lumps might be malignant he thought they probably were not, but the hematologist would be able to give a diagnosis following receipt of the blood tests and a biopsy. I bet, like us, you are now thinking, if this thing can be tracked by blood tests why hadn’t my PCP ordered them when she did the others? Good question – I wish I had an answer! Anyway we were soon back home and ready to phone the hematologist recommended by the ENT specialist when our PCP phoned to say she’d heard from the radiologist to say there were “multiple masses” and they may be significant. The PCP now suggested we visit a surgical oncologist, in order to have a biopsy (as she’d previously mentioned the possibility of a biopsy you might have thought this would have been a definite recommendation to start with rather than a possibility after the ENT consultation. I share your opinion.), and made a recommendation. On checking out the specialist recommended by the PCP my wife discovered he’d had a sanction or some such and had paid out one unspecified claim in the sum of $250,000. Not a small sum so presumably a big mistake. Our faith in our PCP fell even further. My wife started phoning round to set up an appointment with a hematologist who could also do the biopsy as we didn’t really trust the PCPs suggestion and the ENT specialist recommended hematologist is on holiday for Christmas and although other capable doctors are available to see me there is no-one to take the biopsy. So, more phone calls then and a lot of internet research and a lot of cross-checking with our insurance company to see whether a particular doctor is or isn’t on the approved list as the lists available over the web aren’t actually up to date – does no-one use a database? Eventually my wife found someone whose reputation satisfies us and who is on the appropriate list, naturally we can’t see him until after the festive period, so our fears continue to grow, and assuming it takes a few days to get the results of the biopsy it is likely that another two weeks will have slid past with both of us feeling my neck and asking “Is it any bigger? What do you think? Is that really what you think?”

My wife has done, and, I’m sure, will continue to do a fantastic job of chasing and harrying in order to get me the best treatment we can, but for the first time since this news hit us out of nowhere, she is now impotent to arrange anything further and has no release for the stress and fear which build up in her, sometimes on a moment to moment basis. As for me. well, what can I say? Am I frightened of dying? At the moment I’m hoping not to die so in some senses my answer can only be speculative, and no, I don’t think I am frightened of death. Don’t get me wrong, I do not want to die yet, and there is much in this world which I would like to experience more of, my wife, my children and grandchildren, friendships, glorious sunrises and sunsets etc., but if the death itself is relatively painless then I’m probably OK with it if there really is no alternative.

What am I learning from all this? Well, medicine in the USA seems to happen faster than under the NHS but I think, perhaps, that is appearance rather than substance. Had my wife not harried and chased and then harried and chased again we really wouldn’t have made a great deal of progress. I’m also pretty sure that had we been unable to be assertive with the insurance company, unwilling or unable to challenge and pressure our PCP, or lacked the confidence to set up appointments in advance of the insurance company actually giving an authorisation then we really wouldn’t have made a great deal of progress. I keep seeing items on the news that around 50% of Americans now live in poverty as well as huge numbers without any insurance and I wonder how they could have dealt with the practicalities of dealing with something like this. Those people who have had their homes repossessed when the company which employed them folds, and who are living in motel rooms provided by charities must already be mentally and emotionally close to being overwhelmed, and as for those even less unfortunate who have no accommodation at all how on earth could they be expected to work their way through this minefield of apparent self-interest and lack of co-ordination. I read today that those on the streets of Britain die 30 years younger than those with a home. It’s not really surprising is it?

So, where does all this leave me right now? I don’t know really. I know the stress levels in the household have, at times, risen almost vertically, I also know that the stress has brought my wife and I closer together, but I’m already discovering that I need time alone, time away from other people so that I can just concentrate on me, on what I am feeling, and work out how to go about the rest of the day and I’m sure that this in itself is also capable of pushing the stress levels higher. I’m also sure that I’m going to have to keep on leaning on my wife and that she will be there for me no matter the cost to her. It really is good to know you are loved!