The Constant Patient

Loss of Innocence-It Goes On.

I left the saga last with J' having gained control of her Diabetes and progressing to a more 'normal' lifestyle, but of course once the NHS has it's claws into you it never wants to let go. Between us we decided that we did not want to participate in any of their 'educashun' (sic) programmes for Diabetes, nor did we want to return to that hospital for any tests for osteoporosis, or X-rays or indeed for anything. Whilst both of us had a jaundiced view about DXA scans for bone density, on balance we thought it was justifiable to have at least one done to determine whether any such condition really existed. As a consequence we decided to pay for one at another location. So we did.

The results were pretty much as predicted; her hip and spine were slightly less dense than optimal and she was defined as 'osteopenic', which is pretty much what any post-menopausal woman is likely to be, especially in our Vitamin D deprived country with it's aversion to sunlight, love of sunscreens and paranoia about cholesterol. All these, for those who do not know, contribute to the density of the human skeletal structure or rather don't, if you employ any of the above.

A year down the line from the accident we also saw a 'new' Consultant who X-rayed the hip in which the prosthetic 'lurked' to ascertain the extent of any acetebular erosion or protrusion. There wasn't any; well not that could be seen, but frankly a normal X-ray is unlikely to show any until progression was reasonably advanced. It did provide some assurance however and the Consultant was at least honest and didn't treat either of us like children, probably because I talked the 'language' of his profession, in that I utilised medical terminology. In the meantime, we had both changed to a new (for us) GP practise. Because J' was now a registered Diabetic she then began to receive constant entreaties both in the mail and on the 'phone to attend for this test, that vaccination, sundry assessments most of which were largely pointless, or were largely encompassed by our own protocols.


Out of interest, we eventually gave in to a 'diabetic assessment' more out of curiosity than anything else. Of course it was undertaken by a Diabetic Nurse, which presumably did not describe her condition (it was a woman) but her vocation. Looking as she did I was prepared to revise that view because she embodied the 'don't do as I do, but as I say', philosophy in the NHS of appointing those who look sicker than their patients to advise them of the error of their ways. She looked as if she had been a Diabetic herself for many years, bordering on obese, with a florid face and that constant frown, common in those that have little understanding of  what they are doing because they have no idea of why they were doing it,  (I think she probably drowned puppies for a hobby).

She took J's blood pressure (132/65), weighed her, which was the same as it always was (now) took some  bloods for analysis including for a 25(OHD) that I had requested and laid her on the couch and prodded her feet with a short bristle device. As she weighs herself weekly, I take her blood pressure, and often 'tickle' her feet (it makes her jump) it all seemed pretty pointless to be frank, but she did suggest we come along to the 'club' they have for Diabetics, and also a training session where we would have likely had the virtues of low calorie/low fat dieting, extolled in glowing terms and of course be told that there was no need to 'test' constantly (because test strips cost money and the NHS doesn't have any). We declined I'm afraid. She looked crestfallen at this news, but we had seen the pictures on the leaflet and certainly did not want to emulate any of the antics therein portrayed (watching paint dry seemed more attractive).We left then to await the blood test results which were to be available in about 5 days.

Four days later, whilst we were whiling away the time at the 'hovel' counting the cobwebs on the ceiling, the 'phone rang and lo' it was the lead partner in the GP practise wanting to speak with J' about the test results. As we did not have them as yet I found this curious, but not wanting to prejudge the situation, I put her on the 'phone and listened in on the speaker. After praising J's HbA1c result, of 6.3% (the achievement of which he had no hand in, but would be rewarded anyway on the Quality Outcomes Framework) he raised the question of her Cholesterol level of  7mmo/L and suggested she take a statin. J' then asked me to respond to this so I took over the conversation after she gave permission to the Doc' on the 'phone. I pointed out to him that there was no evidence to support such a protocol for any woman, and that it would likely be injurious to her health, along with a few choice references that supported my view, and perhaps he might do a bit more research? At that point he fell back on the "I am only carrying out orders" defence and then told me how the QOF meant he had to do things that he did not always agree with, just to earn a 'crust'. Forcing back a tear, I expressed my heartfelt regret at such appalling treatment meted out by the PCT Commissars and we left it at that, after he promised to let me have a copy of all the test results.

What then are we to make of this? Well, GP's are paid to monitor Diabetics under the QOF protocols and ours had earned 44 points by undertaking the Diabetes examination and recording the findings. This includes achievement of some points from blood pressure, HbA1c and certain levels in the blood of various components, all of which he had no hand in at all! But of course that is never enough. We already had refused the tests for Retinopathy, because our Optician included it in J's annual eye test, the annual flu' vaccination, because it's counterproductive and now of course we had refused statins'. One gets the idea that curing sick people is merely an adjunct to the more important task of fulfilling certain criteria within QOF that invoke payments. Is this what Primary Care has become? Well err... yes.

Diabetics are treated very poorly by the NHS, and outcomes continue to worsen, mainly I believe because the diets, drugs and lifestyle advice is founded upon poor science, dogma and the touching (but wrong) view that 'Pharma' is a benevolent edifice, searching endlessly for cures and life enhancing drugs to make the lot of Diabetics as 'normal' as possible.The truth is that they only want to 'treat' the condition and symptoms with a cocktail of their products, in ever increasing number and volume to make a profit! Virtually all of the evidence that backs their products as efficacious is funded by them. Diabetes UK is heavily dependent on their largess as is the US equivalent the ADA.

It is not inevitable that Diabetes is progressive and life shortening unless the 'mainstream' treatments are pursued. Many know this and either overtly or covertly follow their own agenda and are considerably healthier as a result. When J' gets a day when her three times a day tests, all come out as normoglycemic purely by gist of diet, a little exercise and a few supplements, it is a cause for celebration. It can be difficult some days, there are pitfalls in many foodstuffs that are not evident at first analysis but by testing rigorously they are soon found. But if you are not taking a hypoglycemic drug they are not funded by the NHS. So you have to buy them yourself. So you save the NHS lots of money by being responsible for your Diabetic destiny and the mealy mouthed idiots then penalise you for so doing. Crock of s**t or what?

I will continue to post the continuing saga as and when it happens. J' is somewhat handicapped as a Diabetic because her piss poor prosthesis is not conducive to vigorous exercise and that is a useful protocol for any diabetic to lower insulin resistance and 'burn off' excess glucose. So she has been doubly damned by the arrogance and stupidity of a system that is incapable of factoring in individual needs in treatment. Thank you NHS for making sure the law of unintended consequences rules!

Loss of Innocence (The Complaint).

I left the story last at the juncture where I was trying to fathom what had happened to J' whilst she was in Hospital, and why so many things had gone wrong. I had been trying to convince her, that we needed to both find out exactly what her prosthetic hip, was and to ascertain why she had been so ill postoperatively, at least.

It took some convincing, on my behalf as J' wanted to put it all behind her; to forget all about it completely, whereas I did not. I did quite a lot of soul searching, as I knew that J' continued to display stress when talking about events that had occurred and I did not want to coerce her into anything. It was painful for me too, but I felt it imperative at least to garner some information, so as to guide any action in the future. So the first step was taken; that of requesting all the notes about her Hospital treatment.

What may seem a simple request, turned out to be more difficult than anticipated and I sought the help of the Patient Advocacy Service to assist me in this. I was not confident that they would be of any use but was pleasantly surprised by the case officer appointed, Andrew (not his real name, which I never knew) whose knowledge and understanding was of great help. So we submitted a request for the medical notes and sat back and waited, and waited. Well it took an age, cost some £50 and came in instalments. And of course you have no proof that what you receive is comprehensive, because you do not know what may have been omitted. Some two months later we actually had them all and I commenced the task of review.

Despite my knowledge of Human Biology and Biochemistry, I admit to floundering somewhat; well quite a lot actually. I had not looked into science in this area for more than thirty years (my how time flies) and I found that I not only had to hit the books, but had to buy some more contemporary ones. But of course we now had the Internet, except I had not used it much before, being a bit of a 'luddite' in a way although I had embraced microprocessor logic quite extensively. So now I had to embrace that as well. But after a few hiccups I was soon getting up to speed.

My review of the various tests conducted proved to be the most illuminating element of J' treatment and the memory I had of the Paramedics question, about controlling her Diabetes soon became understood. Her preop' blood glucose was 19.50 mmol/L ! That is severe, uncontrolled hyperglycemia, a situation that could only indicate Type 11 Diabetes. In addition she had been given a 'bolus' of several antibiotics including several penicillin's. She has a well documented adverse reaction to this type of antibiotic, which was advised to the Hospital on admission and it was clearly stated on the notes. There was also strangely, a copy of an ECG trace together with a chest X-ray copy (on disc). These were 'ghosts', because no such procedures were undertaken, and let's face it it would be extremely difficult to 'sneak' an ECG onto a patient, with ten electrodes having to be placed onto various parts of the body and the machine, being wheeled into the cubicle, especially as I was there too. Bizarre is the only word I can use for this.

So the first thing I had to do was to address the distinct possibility of Diabetes. I knew that high blood sugar is symptomatic in trauma patients, it's part of the human stress reaction, but not anything like the levels reported (and ignored!). So I purchased a blood glucose monitor and some test strips and tested J' for both fasting and post prandial (after a meal) levels. I did this on three days to be absolutely certain and the figures were indeed well above normoglycemic levels, in the region of 10mmol/L (fasting). So whilst I was by then sure she was a Type 11 Diabetic, it has to verified by a Doctor for this to be 'official' so we had to make an appointment to see the GP which we did. When we talked to her (the GP) she was also convinced of the same and immediately wrote out a 'scrip' for Metformin. And she gave us a blood test instruction to be fulfilled at either of the two local Hospitals. I viewed this as somewhat premature, but she dismissed totally the concept of diet and exercise as a protocol for containment of the Diabetes. A rush to judgement? Well pretty much I felt, so we did not fill the prescription and never did.

I had already completed some research into Diabetes prior to the GP visit as the only thing that I could recall from College was that the 'Islets of Langerhans' become non-functional and thus produce little to no insulin. J' also had more practical experience than I, as her father had Non Insulin Dependent Diabetes Mellitus (NIDDM) for a large part of his life. But his condition was treated with diet and exercise. That frankly was my take as well because that had been the protocol for most, thirty or more years ago. What had changed it seemed, was the fear of fat and meats, as the diet route dictated that little to no carbohydrate be consumed. As all carbohydrates convert to glucose in the digestive system somewhat rapidly, it also made biological sense to shun them. What had changed then since my studies in the 1960's? Well quite a lot it seemed.

'Big Pharma' in it's ceaseless pursuit of money had become all powerful along with Diabetes UK, an alleged patient advocacy organisation, and their dominance of  the treatment paradigm now in place dictated that Diabetics take a cocktail of drugs including it seems Insulin. Insulin Dependent, Non Insulin Dependent Diabetics? Well that seemed somewhat nonsensical. More research was obviously needed and urgently, but we did concentrate our efforts, (for by this time J' was 'onside' about this, if little else), on reducing carbohydrates with a view to elimination.

After more heart searching J' finally agreed that we should also register a formal complaint with the Trust about her treatment and now, because of the notes, we also had (at last) found out what 'they' had put inside her (hip). It was a bi-polar hemiarthroplasty, which is a 'hemi' with a plastic cup added to the top of the head (ball), that was 'stuffed' (no other word describes it better) into her acetabulum. Research sadly does not attribute this with any better outcomes than a simple 'hemi' and the recipient also has more plastic debris to cope with together with little in the way of less acetabular erosion or protrusion. So it is little better than a simple 'hemi', just a bit more expensive. It had taken more than four months to determine the presence of this prosthesis, which somewhat flies in the face of so-called 'informed consent' we were alleged to have given.

And so the Complaint System rumbled forward, until we at last had a meeting. I have written about this in detail a while ago and do not propose to go over it again. Suffice to say we were both devastated by the outcome and resolved to pursue things further, but frankly the ground rules kept moving throughout the procedure making it difficult to find our way. The Brown Government, overseen by that most useless of all Health Secretaries, Andy Burnham decided that a change was needed halfway through our complaint, and we were now left with no choice than to complain that we thought we had been dealt with unfairly, and that the 'Local Resolution' system should review the case once more. The response to this was a refusal, leaving the 'last hope', a referral to Parliamentary and Health Service Ombudsman as our final port of call. But at this stage we decided to concentrate on J's various problems and look for as many solutions as we could.

These were; the need to restore her mobility as much as reasonably practicable with the poor prosthesis she had been given.
To control her Diabetes and achieve normoglycemia as much as possible with the minimum of side effects.
And to investigate the pronouncement about her having osteoporosis we found in the notes.

She had a pronounced limp, termed Trendelenburg's Sign, which was placing some strain on her left leg. We needed some physiotherapy intervention for this and, luckily the PCT in the area had a a policy of self-referral, so we did not have to see the GP for this. Using a bit of 'leverage' in my circle of  friends, I was able to get her an appointment quickly and we got one of the best in the area. He agreed that J' needed help and devised a work plan that involved resistance exercises that I had to help with, that rebuilt the muscles damaged by the operation. It was hard for her and sometimes painful to see, and often I felt terrible for driving her efforts. But after three long months, it bore fruit and the limp was gone. It also helped with her Diabetes by gist of the exercise needed which reduces insulin resistance in the muscles that helps to lower blood glucose.

Her Diabetes gradually came under control with a low carbohydrate diet, regular exercise with walking and an exercise bicycle, together with a few carefully targeted supplements. Her Hba1c reduced from 8.5 to 6.5 in three months, she lost some weight and the youthfulness she formerly displayed, gradually returned. There was a lot more to achieve as yet, but the walks along the canals helped to keep us both reasonably fit and sane. J' had gone from a vibrant, youthful woman, holding down a well paid job to a partially disabled Diabetic with alleged 'brittle' bones, needing help with at least some aspects of life. She had to have an automatic car, help with getting in and out of bath and could only work part-time.

No one person or organisation was responsible for the accident or the Diabetes, but what the Trust did was to ignore many obvious and relatively simple measures that prejudiced her recovery, her future, her very life even at one point, without any sense of responsibility for their actions and lack of them. No sense of danger in their lax and supine protocols; no remorse, no empathy, but above all no candour and no justice.  I had lost my innocence about 'our' NHS, an organisation I had championed in the past, even been grateful to for saving the lives of two of my children. Yet now, after the injection of extra billions in funding, it was actually worse than when it was a service for the poor 'proles' back in 1948. It was devoid of humanity, and the primary tenet governing all that medicine stands for, 'do no harm', because it was doing great harm and 'selling' it as care. It had made an enemy of me and I was to learn in the coming months, many others too. I was no longer 'Winston Smith' and I no longer loved Big Brother.

This saga continues shortly, after I catch my literary breath.