My lived experience of gastric cancer (inoperable, poorly differentiated adenocarcinoma) as seen through the eyes, ears, mouth, anus, fingers, nose, and muscles and nerves of Director, Dean, Vice President, Professor of Teaching and Learning, Director of Learning and Teaching Development, Senior Lecturer in Biomedical Sciences (Haematology) and those of these same senses of family, friends, colleagues and ex-colleagues and new acquaintenances.
The term originates from an episode of the 1950s radio comedy “The Goon Show” in which an epidemic of “The Dreaded Lurgi” was said to be about to sweep across Britain. It turned out that the lurgi was in fact a fictitious disease created by brass instrument makers who had claimed that no brass band player had ever died of the lurgi (thereby increasing sales hugely). “The Goon Show” was an anarchic and surreal radio comedy series that starred Peter Sellers, Spike Milligan and Harry Secombe. It was written by Spike Milligan and Eric Sykes. by mammon_the_source August 03, 2009
In this case Elaine’s condition has been completely debilitating, and though we set off on our sojourn on Sunday, following her birthday on Saturday and travelled to Ellen’s flat in Glasgow we finally acceded to illness winning, and came home to Ceres on Tuesday afternoon. We had planned our “Thelma and Louise – style” road trip that was to take us via Glasgow to Newcastle, Malham, Bradford, Bingley, Burley-in-Warfedale and Ilkley, and home again, seeing as many relatives and friends as we could during the whirlwind visit. Sadly, it will be postponed, perhaps until a similar time in my next cycle of Chemo. That damned Cancer – is always a factor in any forward planning. This is the worse news!
I am just coming through the first week blues period (for me anyway) and having had my couple of steroid-supported good days on days 1 and 2 after the Combo Chemo Cocktail I succumbed to the now-third time repeated pattern of nausea and loss of appetite characteristically appearing sometime on days 4-7. Day seven, yesterday, was not good.
Apart from me having to do the driving as Elaine was not even well enough to share it, I then felt lousy all afternoon and was eventually struck down by own version of the dreaded lurgy – diarrhoea! This isn’t the worst news! I could barely leave the vicinity of our downstairs loo for more than 3 minutes, or dice with death and risk brown trousers syndrome, if I did. Fortunately, this episode lasted only 4 hours! I recovered sufficiently by 9:00pm to be able to have my second bowl of porridge for the day.
This was also just in time to watch the third episode of “Happy Valley” – a murder mystery/detective featuring Sarah Lancashire (second series) and fortunately for us, set in Yorkshire, specifically the Halifax/Bradford area. The language is perfect. “I’ll tek owt for nowt”. By the way, living in Yorkshire then Scotland sometimes makes me wonder whether my subconscious has more say than I do about my approach to money (and not wanting to spend it – unless on LPs, CDs and posh Hi-Fi to play them on). So, you’ve no doubt heard about the definition of a Scotsman, “someone with short arms and long pockets”; and a Yorkshireman, “A Scotsman with the generosity squeezed out of him!”. Apologies to those who would have preferred gender neutrality!
Speaking of music, hi-fi and guitars (I know we weren’t, actually, but I need only the slightest invitation!), I bought the most recent issue (403) of “Guitarist” monthly magazine which featured a forthcoming sale of some of Gary Moore’s enormous collection of vintage as well as contemporary guitars including, possibly, the restored Gibson Les Paul of Peter Green, his earlier mentor and good friend.
Now only Peter himself can make the transcendent tones of songs such as, “I Loved Another Woman”, (Peter Green’s Fleetwood Mac) or “Love that Burns” (Mr Wonderful), sound any better than Gary’s versions, on for example, “Blues for Greeny”.
The article, celebrating the fifth anniversary of his death, is fabulous, drawing on Gary’s own guitar technician’s recollections and his own (newly discovered interview) stories about his early career with Thin Lizzy and Peter Green’s influence upon him. For example, did you know that he would have on stage a series of guitars ready to select for particular tracks, and for each guitar there would be a back-up and a further back-up to the back-up, just in case!
So, many of these guitars have never been played on tour or on a recording. Consequently, they are not as valuable as those that have or vintage guitars such as Peter Green’s original or the 1959 Gibson Les Paul used on “Still Got the Blues”. The guitar sound is ultimately only as good as the weakest link in the chain so Gary’s awesome sound was also due to his Marshall JTM45 amp – 1989 and a Marshall Guv’nor pedal.
In summary the auction sale – some on line – so that ‘Joe Public” like me may even become an owner, perhaps of the less expensive, small stuff, anyway. No worries, I say! Though I suspect I can’t even afford the tiny stuff let alone the small stuff. This is the worst news!
Guitars like the“Peter Green refurb” will probably not be on sale at all in the first round.
Now back to my “Primary”, my latest NHS reforms paper. I have probably said this elsewhere, but I am beginning to lose track of what was blogged where, so bear with me.
My paper, or at least the abstract, has been accepted for the conference on the Future of the NHS 5 Year Plan. My abstract and personal details were added to the web site for the conference a couple of days ago. Here is the abstract link:
Sorry, if anyone has been left wondering, was that Glen Frey blog his last one, or not? Clearly it wasn’t. This is one of those more mundane updates – what I ate, what I ate next… you know the sort of thing! However, the interim has not been uneventful so read on if you don’t mind a preponderance of domestic-type stuff.
The administration of my Chemo cocktail went like a dream: cannula – straight in; flushing – all good; first up – the red stuff (Epirubicin), and ‘cos you can see it you know you are now less likely to die from excessive, trapped air bubbles; more successful flushing and then on to the arch-enemy, Oxaliplatin (it wins every time, by the way). I reach the last 30 minutes of the 2-hour administration and by then I need a heat pack to protect my injection site, and I’m already feeling a little queasy. Here we go again! However, before I know it out comes the cannula, Elastoplast affixed and I’m good to go. Only three hours in total expended, so we are on our way by 13:00h – yippee!
The next two days were pretty good, probably due to the 4 dexamethasone pills (strong steroid) I am given to take first thing on both mornings, ostensibly to boost my resistance to the Chemo onslaught. They seem to work! Friday morning is a little dodgier, and I’m now on my own as Elaine headed off, via Edinburgh (for more shopping), to pick up daughter, Ellen, in Glasgow to bring her ‘home’ for the weekend. They duly arrive at around 8:30pm together with a Chinese take-away for three of us. They get a shock as they suddenly realise they haven’t catered for four and yet, larger than life, there sits Brad (my best friend who had called around for a chat) sipping a nice Single Malt whilst we “right the world”, listening to Robin Trower (another blast from my 70s past). I reassure them their share of the food spoils is safe, as Brad has already eaten. Phew!
Robin Trower, ex- Procol Harum, and leader of his own trio. l to r: in his young days, his later years, Live in 1974 playing “Bridge of Sighs”, a UK TV Appearance. Accessed at https://www.youtube.com/watch?v=0tLsFsGxLmE on 27 January 2016.
We were enjoying the second album, “Bridge of Sighs” from the first volume of a bargain-priced 5 album collection which was playing at the time – and very nice too. If you like your music loud and heavy (I do too!) then AC-DC is your band (“Highway to Hell” comes to mind).
But if you like your guitar sounds, as I often prefer them, with “space and air” around the notes, then look no further than Robin Trower – just brilliant. And interestingly, King King seem to have adopted a not dissimilar style – hence, I suspect, they lead my favourite new Blues-Rock band of the 2010 decade, for now!
Returning to matters in hand – Friday Night. Eating the takeaway was put on hold and all four of us then put even more of the “world to rights” for another half hour prior to Brad leaving to re-unite with his family, most of which were now in bed and the other tapping her foot, no doubt! Afterwards we did our best to complicate sharing three main meal takeaways where Meal A and B appealed to only one person; Meal B and C appealed to another and Meal C and A looked more than attractive to the other. No-one wanted less than half of the main meal they had ordered for themselves but no one wanted any less than a proper third of the total spoils. To achieve this was some feat given that A was Chicken Chow Mein; B was Chicken Satay and C was Chicken Egg Foo Yong. And there were two portions of egg-fried rice as well as the soft noodles (from the Chow Mein) also to be shared. But we did it!
I met up with a couple of Masons (not my namesake ones) in Lodge 25 on South Street, St Andrews to be ‘screen-interviewed’ for potential membership of this very ancient lodge (25th Oldest in Scotland). The Grand Lodge in Edinburgh is Number 1 and the Kilwinning Lodge is Number 2, and so on. I am also considering the Cupar ‘O Fife Freemasons’ Lodge (Number 19), at least it is a few miles closer to home here in Ceres.
I have become intrigued with Masons and Freemasonry since I researched the history of my name (Blog 31). And I have subsequently bought a Mason Tartan kilt – second hand of course!
But maybe they will have the last word as two of the criteria for entry trouble me quite a bit (A belief in one’s own Universal Spirit – God (any flavour will do!) to me and you – as well as being very charitable. Now I do believe in the awesomeness of the universe, and I buy a lot of stuff from the Salvation Army, Dr Barnardo’s, The Heart Foundation, Cancer Research UK, and any number of other charity shops, but I’m sure that’s not what they mean!
The rest of Saturday was a “slob out” day – great! We were up very early on Sunday morning. Elaine was to drive to Edinburgh to pick up her sister, Jacqueline from Australia. Meantime, Ellen, Craig (her boyfriend) and I head out to the Dundee centre for the Creative Arts (DCA) to take advantage of the Sunday morning (matinee) offer of a Film, Coffee and Bacon-butty, all for £6! We have decided on Quentin Tarantino’s, “The Hateful Eight”. As ever, Tarantino doesn’t disappoint, though you’ll have to stay awake for a good three hours to reach the “piece de resistance”!
Jacqueline is here mainly to spend time with her daughter and her family who live in London. We all meet for a late brunch at the Balgove Larder café and country produce shop, just outside St Andrews where we avail ourselves of roast beef, Dauphinoise potatoes (though most of us end up with roast ones – they ran out!) and seasonal vegetables. Despite the jet-lag, we all get the benefits of Jacqueline’s descriptions of what she has just left behind in the Antipodes: sun, sea and surf of Sydney! Lucky her, and it brings back memories.
To bring you up to date, on Monday we went back to St Andrews (more shopping) and I visited my GP (Dr M) who advised me on a couple of queries: to keep taking the stomach ulcer medicine, Omeprazole (that PPI, remember?); but to cease taking Finasteride, my medicine used to treat my enlarged prostate gland – hurray! One fewer pill to take every morning.
Finally, yesterday, Tuesday, 26 February, I attended Ninewells Hospital, Dundee for my second Computerised Tomography (CT) scan. On the way in I counted the number of “No Smoking” signs in and around the ‘fresh-air’ garden at the main entrance – no fewer than 28, by the way! Still no effect on the smokers ‘lighting-up’ whilst reading one of them, I despair! I book in and am quickly greeted by an “InHealth” staff member who takes me to a CT scanning room – actually a mobile storage container containing about a million-quid’s-worth of very sophisticated kit including very fast computers that must handle transfers of 5 MB of data per second – billions of 0s and 1s representing 1mm slices of my upper chest through to my lower abdomen. I’ll discuss the results with Dr P at our next meeting in a couple of weeks time just prior to my next round of Combo Chemo Cocktail. Got to admit- I’m excited (if tumours have gone or at least shrunk) and scared (if tumours are still there or new and/or bigger ones have appeared) in equal measure.
Walking back from the makeshift CT facility to the waiting room where Elaine and Jacqueline await I engage briefly with the “InHealth” guy, who informs me that his company is privately-owned, but that the NHS gets a much better deal from them than when the NHS funds these facilities themselves. For example, Ninewell’s waiting list for CT scans is too long for their existing complement of ‘in-house’ facilities but not so long to justify purchase of another machine, a new building in which to house it, and all the vital staffing and maintenance costs (maybe several millions of pounds’ worth of investment). Hence, Ninewells, like many hospitals including large ones like at Dundee, have to rely on ‘privatisation’ to bridge the gap.
My gut reaction is to commence a considered debate (read: have an argument!) about the merits, or otherwise, of NHS privatisation. In principle, I’m against it. However, I bite my tongue, and reflect for a while before just nodding and agreeing how daft it is that the NHS prices itself out its own markets sometimes.
Later, I recall how we had devolved budgets at all the higher education institutions where I have worked. I controlled several millions of Aussie dollars whilst I was at Deakin University in Melbourne. Also, all these universities had very long-winded, complex procedures and rules for purchasing equipment and services. These included using “preferred suppliers” and getting at least three quotations on any proposed purchase of equipment priced above a minimum threshold. Now this is a very frustrating business. Often, the preferred supplier provided the most expensive quotation, and at other times we could nearly always find a supplier via an internet quick search that was the cheapest. We were not supposed to place orders with such companies if they did not appear on the university’s preferred supplier list. How frustrating is that?
Needless to say, I went ahead and authorised purchase of what we needed, at the lowest cost to the university, regardless of our university rules! The rules were either wrong or, at best, out of date, and needed to be revised. Consequently, they deserved to be ignored. I faced the “eventual music” on more than one occasion throughout my career. But if the NHS UK-wide is tied up with similar kinds of red tape, it is no surprise that both ‘insiders’ and ‘government’ believe that there are ‘savings’ to be made in the NHS, though, whose fault it is that these can’t be made by devolving budgets fully to those that manage them on the front line, is beyond my understanding! This ‘problem’ will need to be addressed in my New NHS.
Well, that’s all folks. I promise to chunk my blogs a little more in future, if you’d rather read a little less, but a little more frequently. However, please let me know what you think – via the comments box at the end of this blog.
What on earth is happening to us baby-boomers (1946-1966)? First it was David Bowie, then Alan Rickman (both died because of cancer) and now another of my musical heroes, Glen Frey, of my favourite Country-Rock band- the Eagles, kicks the bucket, all three of them in the space of less than two weeks. At least Glen Frey’s death was not attributable to cancer; now that would have been even scarier, given my present predicament. What do you think? We are devastated. We have seen the Eagles, albeit in later years, 2007, at Hampden Park, Glasgow (and a long way from the stage), but also 2014, at the 02 arena in Leeds (and thankfully much closer to the stage, but also with better nay, fantastic acoustics!).
Thank goodness for those stage screens – in Glasgow, but curses on them – in Leeds, where they acted as a complete distraction when not required on that occasion. I suppose the cheap seats still needed them, but one gets fairly picky having splashed out for posh seats! The Eagles’ Leeds concert was preceded by our visit the previous night to the same venue to experience Dolly Parton (also our second viewing – we saw her in Belfast in 2007 too – busy year prior to migrating to New Zealand in September). She was brilliant on both visits but a problem with the PA system for the first half of the concert in Leeds spoilt things even though Dolly added repeat performances of a couple “first half songs” in the second part of the show. No worries we thought, still have the Eagles to come tomorrow, and we were more than compensated!
A later version of the Eagles.
Alan Rickman as the Sherriff of Nottingham in my favourite role of his:
However, Glen did die of multiple disorders including pneumonia, and this is my link between him and those vital little buggers that circulate in our blood stream: our neutrophilic, granulocytic white blood cell (WBC) (or abbreviated to neutrophil and sometimes called Poly-Morphonuclear Neutrophil, PMN, because of their multi-lobed nucleus). These cells get their name from their appearance under a light microscope at high resolution and magnification (>500x) from a combination of their staining and the presence of distinct ‘granules’ that are in fact vesicles containing packets of chemicals (eg, hydrogen peroxide) as well as highly specific enzymes that assist in the killing and elimination of bacteria associated with infections such as pneumonia.
To see one of these tremendously hard-working little gems of the blood system a small drop of freshly-drawn blood is placed upon a microscope slide (or at least it was, way back when as a haematologist I prepared my own) and a thin film is created by drawing out this drop with another slide. The blood-covered slide is allowed to air dry and then it is (was) placed in a Coplin jar for staining.
Coplin is just one of the many offerings I get from word-processor auto spellcheckers for my first name – others include colon, coin, Collin, Coppin, Copland and on and on. A Coplin jar is a small, beautifully crafted glass vessel with an accompanying lid, containing the stain, Giemsa. Giemsa is like a combo of Haematoxylin (Alkaline blue dye) and Eosin (Acidic red dye). The Haematoxylin-like component is attracted to alkali-loving cell structures such as Nuclear Chromatin as well as alkali-loving components found in some white blood cell granulocyte vesicles. Eosin is attracted to acid loving components, including those in WBC vesicles or ‘granules’.
The granulocytes get their name because their granules are easily visible and distinctively coloured. All three types of these WBCs mount their attack rapidly on infectious organisms or damaged cells and tissues. In fact, the three types of granulocytic WBC are not equally represented. Alphabetically, they are the acidophil, actually eosinophil (about 5-10%), the basophil (about 0.1-2.0%) and the neutrophil (about 60-90%). Clearly the neutrophil is boss in this subcategory of WBCs. The names of all three granulocyte cell types is associated with the staining of their ‘granules’ in this dye combo: under the light microscope eosinophils have bright red-orange granules; basophils have dark blue-purple, nearly black ones, and neutrophils, you’ve guessed it, have the middle ground – they appear purple-mauve-lilac (at least they did to my eye), and are thus ‘neutral’ or between blue and red. Hence the neutrophil is named, and now finally you know what I was on about in my previous cancer blog entry.
White blood cells in a stained blood film.
Top l to r: Eosinophil (Acidophil), Basophil, Neutrophil, also known as a Poly-Morphonuclear Neutrophil (PMN); Bottom l to r: Lymphocyte, Monocyte
The other category of WBCs is the non-granulocytic population comprising round or oval shaped lymphocytes and the similarly shaped but larger monocytes. These two functionally different cell types look similar to one another in the blood-stained images seen under the microscope, partly because the lymphocyte population is diverse in size and sometimes a lymphocyte is nearly as large as a monocyte. Nevertheless, they can be differentiated (distinguished). Both types have a nucleus that occupies much of the cell volume, though the monocyte nucleus often appears indented. For better financed haematology labs fortunate to have better microscopes (such as the German Leitz, or even better, a German-again Zeiss) small ‘granules’ can sometimes be seen in monocytes. Mobilisation of lymphocytes and monocytes is somewhat slower than for granulocytes, though this can depend upon whether a person has been infected previously with the same organism, and in which case these cells can respond quicker, though again usually not as rapidly as the granulocytic WBCs mount their attack.
Complicated stuff, eh? Just to add a little more to your headache then, neutrophils often work in close collaboration with monocytes against some infectious bacteria. Monocytes are the longest lived of the WBCs. Further, after the initial attacks, predominantly by granulocytes, breakdown products released from the devastation of battle with bacteria may attract lymphocytes to the scene and it is these cells that then initiate or kick start the immune response, and it is this and subsequent reproduction of these cells that ‘prime’ and equip us to be better armed against the specific (or sometimes related) organisms. On a subsequent exposure to the infectious organism (bacteria already mentioned, but also viruses, fungi and parasites) lymphocytes particularly get to the site of action quicker than on the first infection and further, these already ‘primed’ cells receive intercellular signals that trigger cell division, and proliferation through exponential reproduction.
The total population of lymphocytes may have different activities, particularly during this ‘second exposure’ phase of the immune response. Some, the so-called B-Lymphocytes (or B cells), produce specific antibodies against the target infection whilst T-Lymphocytes (or T cells) mount direct cell attacks on the enemy. Also, some T cells form a repository of ‘helper’ cells that also assist B cells in producing more antibody as well as helping initiate cell-cell recognition. It is the T cell lymphocyte population that is gradually destroyed in Human Immunodeficiency Virus (HIV) infections and ultimtely (without treatment) leads to Acquired Immune Deficiency Syndrome (AIDS).
Returning togranulocytes, it is eosinophils that cooperate (and often fail) with neutrophils in attempting to destroy parasites, and can be often seen in great numbers in thin sections of human tissue plus parasite-infected tissues from sampled areas of the body when viewed under a light microscope by histopathologists. Basophils often appear at the site of inflammatory reactions, and may even attract eosinophils to the action as they release histamine from their ‘granules’ – and so also can be seen, though not exclusively, at the site of a particularly resistant parasitic infections.
Once again you deserve a bonus, and I guess it was a little remiss of me not to give you my favourite Bowie track, “Golden Years” after he died. So, with apologies here he is now. You also qualify on further grounds of putting up with some more biology or biomedical science stuff. So here goes:
Though please read below if you are an addict for punishment as well as more critical information about using blood-borne human stem cells for treatment of various cancers.(A late addendum!)
[“In addition to their distinctive cytochemical staining characteristics (Giemsa staining), blood cells can be distinguished on a gross level by their average size and granularity as measured by flow cytometry. With a flow cytometer, the optical effects of passing a single cell through a laser light beam can be measured in terms of light scattered by the cell in two directions – parallel to the beam (“forward scattering” or FSC) and perpendicular to the beam (“side scattering” or SSC). Greater FSC correlates with larger cell size while greater SSC correlates with more granularity in the cytoplasm and nucleus of a cell. A two-dimensional plot of FSC versus SSC for human blood cells, reveals that different cell types exhibit distinct average ranges of size and granularity. Thus, flow cytometry can be used to analyze and even physically isolate different blood cell populations. With a modified flow cytometer designed to detect fluorescent light stimulated by the laser beam, i.e., a fluorescence-activated cell sorter (FACS), even finer distinctions between different cell populations can be made if they have been treated with fluorescently tagged monoclonal antibodies directed against specific cell surface molecules, generically referred to as cluster of differentiation (CD) antigens.”]
The various WBCs are not only recognised through this automated ‘differentiating’ process, but they can also be harvested by setting ‘gate’ windows around particular regions on the screen visualisation after a first run, then repeating the procedure with the ‘harvest’ button activated. This differentation procedure mimicks the ‘old-fashioned’ WBC diff-count (differentiation count of at least a hundred cells and preferably more) on a stained blood film or smear, though using staining characteristics and morphology (colour of ‘granules’ particulaly,overall cell size, shape of nuclei and size and density of granules). The absolute count of each WBC type is determined simply by mutiplying the Total WBC by the percentage of cell types present in each category – easy as pie, eh?
Finally, it is also possible using CD markers to distinguish lymphocyte sub-populations including all of those previously mentioned, the T cell variations, B cells and more recently a population of lymphocyte-like cells (size and morphology) called bone marrow-derived but now blood-bornestem cells. The identification and harvesting of these cells is now almost a routine procedure and has revolutionised treatment of many haematological diseases such as leukaemias and lymphomas as well as other cancers. Sometimes patients are exposed to lethal doses of radiation and then donor-harvested stem cells are given back to the recipient patient. This is a more complicated procedure than donor bone marrow transplants following total ablation of recipient marrow once again, but it carries a much lower risk of donor-versus-graft disease, where the donor bone marrow cells and their subsequent progeny, mature blood WBCs, can recognise and subsequently attempt to destroy recipient cells and tissues that are recognised as ‘foreign’. Blood-harvested stem cell transplants are costlier, certainly short term, but treatment with immuno-suppressant drugs for prolonged periods of illness is far from cheap either! This is yet another topic for my New NHS, but not as we know it!
On Friday (15 January 2016) Elaine and I visited Ninewells hospital, Dundee to do the usual stuff as part of my Pre-Chemo assessment. I donated an armful of blood for tests; had my blood pressure, heart rate and temperature taken; provided my personal, oral account of the highs (not many of them!) – and the lows (but plenty of them!) of the last three weeks as well as handing over my daily diary. In addition to the foregoing all my carefully crafted, oral and volunteered minor complaints (severe skin itching, typical Oxaliplatin-cold interaction side effects: runny nose, eyes and mouth; tingling and numbness in fingers and toes as well as feeling the shivers, occasional constipation and an overwhelming irritability and need to walk around the house in short, staccato steps – to no good purpose), were dismissed as not significant by my angel nurse – so much for that bit of attempted “flattery gets you everywhere” nonsense- it doesn’t! I was assured I’d be contacted if my blood tests showed anything that needed to be dealt with promptly.
I pointed out that I had secured a special meeting with Dr P on Monday, 18 January (today), and I agreed to return to the ward following the meeting if there was to be any ‘change of the plan’. As it happens, there wasn’t, so I didn’t! However, Dr P did notice that, whilst my haemoglobin level had taken another step closer, albeit a small one (now 102.4 g/l compared) to ‘normal’ (150-170 g/l for us men), I did have a low neutrophil (a white blood cell that fights infection) count, and that I should have this checked to see whether there had been any further recovery over the weekend, before arriving for my Combo Chemo Cocktail early tomorrow morning. I’m not allowed to proceed to the Combo Chemo cocktail unless my neutrophil count reaches a ‘magic, safe’ number. So, a quick but impromptu full blood count was proscribed and different angel nurse arrived from nowhere with an armful of phlebotomy tools, swabs, towels and of course blood containers! Damn! Yet another armful of blood goes to the NHS. I’m not sure who is more indebted to whom here! I strongly suspect it is still me, but I have to try every angle to build up my current (or currency?) account with which I can do my bargaining, wouldn’t you? I had an approximately one-hour-long chat (again) with Dr P, this time straight to the chase, “how could I get a PET-CT scan if this might help more with my prognosis?”.
Once again Dr P did a brilliant job at explaining his reasoning for believing that a CT scan would be sufficient at this stage. He felt strongly that I should continue with further rounds of chemotherapy (between 6-8 cycles in total) unless the CT scan revealed a different course of action, such as increasing the dose of the current chemo or a switch to a different drug if my side-effects worsened. He also reiterated his strong view that surgery would not be an option for me, even if a PET-CT scan revealed dormancy of the cancer since it was still likely that some or even the last cancer cell, if remaining, could still re-kick-start the metastatic cancer growth. This is a real fear about surgical intervention for patients such as me, as he has seen the consequences (poor or even completely disrupted healing) of contamination of surgical sites (eg the joined faces of a surgically-reduced stomach) with such ‘feeder’ peritoneal cancer cells. Furthermore, we already have strong evidence (my first, though only CT scan, to date) of spread of my cancer to my abdominal cavity organs – at least pancreas, adrenal gland and a few lymph nodes- as well as possible, additional omental ‘seedlings’ of my peritoneal organs. Dr P believes that this could have occurred via peritoneal cancer cells. We can’t know otherwise, I guess.
The only minor flaw in this argument, however, is that we have no way of ‘knowing’ rather than ‘intimating’ such cells are present. Peritoneal samples were not taken nor examined for the presence of poorly differentiated adeno-carcinoma cells with characteristics of close proximity to my primary gastric cancer. It is possible, again in my view, even if less likely, that all my secondary cancer deposits could have been blood or lymph fluid borne, carried via the vascular or lymphatic vessels, respectively. Notwithstanding this latter point (which I couldn’t raise in the meeting since I only thought of it when we were driving back home over the Tay Bridge!), and despite all of my slight objections or queries, I have realized better now the merits of Dr P’s arguments and his stance – he fundamentally thinks it is in my best interests, and I am appreciative of his concern for my overall and long-term well-being.
Well folks, that’s it. I have to be back again in Ward 32 at 9:30 am tomorrow for my next cycle of intra-venous Chemo (Epirubicin followed by my dastardly Oxaliplatin!), assuming those little neutrophils have returned in adequate quantities to permit it safely. Now, I think you have deserved a bit of music for your bother of checking my blog (and the cupboard was bare – for three days) and for putting up with some of this medicine and biomedical science stuff. So here goes:
Paul Weller’s live acoustic performance, “Days of Speed”, 2001. Do try either Track 2, “The Loved” or Track 16, “Wild Wood”; just amazing, though you could equally put your i-pod, i-phone, i-pad (or similar android facility) on shuffle and you’d turn up something brilliant, a new version or acoustic rendition of one of his key songs.
I’ll briefly repeat my 6 point (bullet) plan for the NHS to preface my focus for today’s section on 5. Research.
Education – underpinned by philosophy
Screening – underpinned by data
Testing – from birth to death
Preventative treatment – promotion of healthy life styles
Research –on preventative medical conditions
Evaluation – led by self-scrutiny
Research on preventative medical conditions
It is a not well kept secret that most medical or biomedical research is aimed at finding treatments or (hopefully) cures for one condition or another, for example, heart disease, cancer or more specifically, Diabetes Type 1. The system is underpinned by vested interest, and clamour for any major change will no doubt be met with “deathly silence” or covert hostility. The current approach to research is admirable and one to which I, myselfhave contributed.
No, I won’t re-iterate my fondness for Joan Armatrading (Me, myself, I – remember?) with musical or visual illustrations. Now bear with me folks, this blog entry is a serious piece of writing, so there won’t be any visual, musical, film, comedy or poetic interludes, and you are going to have to be grown-ups and read through to the end to find the couple of musical “Easter-eggs” I have buried herein. But I promise you, there’s “light at the end of the tunnel”, “gold at the end of the rainbow”, and a “couple of new artists” to discover, but only if you continue reading from here and preferably, make a comment in the ‘reply here’ box at the end of the whole blog!
…so, to continue with the serious stuff.
My PhD thesis was entitled, “The anaemia of chronic renal disease”. Also, I worked with many clinicians and research students to discover more about, for example:
interactions between platelets and prosthetic materials used in venous grafting;
binding of platelets to defective connective tissue in Ehlers-Danlos syndrome;
levels of platelet Adenosine Tri-Phosphate (ATP), and Adenosine Di-Phosphate (ADP), an intra-cellular biochemical as well as an extra-cellular aggregator of platelets (causes platelets to clump or clot together to prevent blood loss normally), in unexplained minor bleeding disorders; and
effects of human immunodeficiency virus (HIV) on blood coagulation factor interactions.
With hindsight, I now see that although these and the many thousands of medical discoveries that lead to better treatment of patients’ suffering are admirable; and ironically, contribute to the very success of improved health and social care in an expanded global population, through substantially reduced infectious disease in some parts of the world, and increasing longevity in both western and developing societies. However, this will not be a sustainable strategy for the future.
The aim of research is totranslate laboratory or pilot studies to serious clinical trials and eventually to practice. This is the challenge, as this translation process does not always materialise, but can’t be avoided as part of an overall experiment. Similarly, research designed basically as a “treatment of disease” approach is not likely to translate easily to a “proactive, prevention of disease” approach, designed to reduce incidence and prevalence of illness and disease. Accordingly, I suspect, a new overall strategy will be required for the New NHS despite many proactive, preventative efforts and projects already being pursued.
For example, intense efforts are being made to develop better blood-taking and drug-giving devices for new-born babies and for insulin-dependent diabetics (Type 1). The so-called Velcro-type patch comprising hundreds of micro-needles on a small Elastoplast-sized backing pad which when applied can be used to take ‘heel-prick’ blood samples in neonates without pain and much less tissue damage. The hope is also to be able to administer drugs or biological therapies for example in diabetics, such as recombinant human Insulin (rhu-Insulin) through the same device which can be similarly used to withdraw blood, at least for blood glucose-level testing. After treatment the patch can be removed much like a current Elastoplast with minimal inconvenience. This would be a major improvement over the current methodology for daily multiple testing and treatment of Type 1 diabetics.
Early death diseases
There’s a raft of relatively rare but ‘killer’ diseases that are predominantly genetic, requiring both parents to have contributed a recessive gene to generate a homozygous (both copies of genes are similar) condition or phenotype (both recessive genes are needed for the expression of the disease state). The disease state may be immediately apparent after birth of the affected child or the symptoms may be delayed and for some diseases early death may ensue. These conditions include Multiple Sclerosis, Huntingdon’s Chorea. Much research and funding is already aimed at discovering preventative measures but much more is required. ‘Minority’ diseases would be given a definitive slice of the research pie in my new NHS.
The cause of Diabetes type 1 is still not fully understood but the cause of the massive increase in Diabetes Type 2 can be largely attributed to life-style choices, in this case over-eating and the development of over-weight/obesity. There’s still a small proportion of type 2 diabetics where the cause may be known or even not known, but they are not in this new life-style category. The impact, particularly of this in childhood and young adults as well as older people (those previously and mainly affected), is that the treatment bill and cost to patient health is not only attributable to diabetes itself but also all of the usual suspects, side-effects, obesity, heart disease including heart attack and stroke, and thrombosis leading to poor circulation of especially the extremities (hands and feet) and potentially resulting in amputations. The cost to all health care bills is enormous and growing worldwide. Preventative research would surely pay huge dividends as a long term investment?
As genetic profiling becomes a ‘norm’ in the future NHSit will be possible to determine whether there are links between phenotypes or even ‘carriers of particular genes‘ and the incidence of major diseases such as heart disease, cancer, lung disease as well as rarer diseases. This would open further potential anticipatory interventions as medicine became more confident in its approach to proactive medicine based upon research findings such as these – better predictors of future, potential patients.
Researching Disease and ‘the money’
One of the barriers to adopting a proactive, preventative approach is that it ‘costs too much‘. In the new NHS we would need to reverse this mind-set. A key question will be, “is it not more expensive to continue with old approaches?” This may well be the case, especially longer term. Often however, the answer is not known. So, research to answer these questions will be required more and more as NHS funding becomes ever more limited as spending per capita rises and overall budgets stagnate or are cut. This can be summarised as “retrospective analysis of treatment costs for diseases, particularly late-onset, though not only” and cost of early intervention.
Evidence-based medicine as well as research will require awkward questions to be asked. For example, despite some claims that gastric banding is an effective treatment for overweight and obesity, to me, it sends the wrong message ie treating the patient’s symptoms and not the cause. Plus, my own stereotyping of overweight patients has maybe clouded my view. I say this now since my gastric cancer which largely occluded the whole of my stomach lumen possibly acted like a gastric band. My appetite diminished progressively as the cancer presumably grew until I commenced chemotherapy. But it also continued since and overall I have lost four stones. Whilst not all of this is likely to be due to ‘gastric banding effects of the cancerous lump’, it is undoubtedly a component. So, I now see how and why gastric banding works. Will it be less costly than other interventions either short or long term? Do we know the answers already? If not, this may be research for the future.
Where is the money coming from for research and new approaches to medicine? This may be a major research question itself, but there are a few other questions or approaches that can be addressed. Can savings be made from not treating preventable ill-health and reduced treatment of age-related diseases? Who pays and how, when ill patients rather than healthy(ier) populations still predominate? Treatment may have to be front-loaded initially and then gradually scaled back in say, a five to ten-year transition period. Also, maybe there should be more direct links between those gaining most from national profits on curative treatments and drug sales from suppliers and vendors (Pharmaceutical companies, medical device manufacturers and sales companies) and the raising of revenue to be spent on the New NHS?
Finally, maybe further revenue should be raised through levies and taxeson harmful products eg sugar in soft drinks, nicotine in smoking products (cigarettes, cigars, pipes) as well as reduced and non-nicotine products (E-cigarettes) that simulate or prolong coming-off nicotine containing items. The present Government has already proposed such a tax – a 10p premium on sugar-containing soft drinks, particularly those aimed at the child and young adult markets. Governments will simply need to be bold (tell truth to power) when they deal with opposition from vested interest groups. Researching the impact of such levies and taxes might also become a more acceptable or legitimate activity in future, though probably it would fall into my category 2 or 3 (see below) in a new classification scheme for defining research.
The Future of Medical Research?
We require more forward-thinking or anticipatory approaches such as these. While we focus on treating current illness, and not on future health as well as current health, the imbalance in ‘treatment-focused’ versus ‘health-focused’ research will persist.
Individualised health care utilising complete personalised genotypic data may well be the future; and it is not just me that thinks so. Mark Beggs (quoted below) is already leading an innovative approach to the use of informatics to assist, where appropriate, in the treatment of patients utilising genomic data (gene profiling based on the Human Genome Project).
[Mark Beggs: “AnalytiXagility extends its services to industrialise the ability to link and analyse sequence and other data sources to support precision medicine research and initiatives.
The platform provides capability for national genomics facilities, genomics initiatives in the NHS, stratified medicine research, bioinformatics start-ups and annotation service providers.
These services are made available through the Stratified Medicine Scotland Innovation Centre (SMS-IC). This unique centre brings together experts from academia, industry and the NHS in Scotland to implement a biomedical informatics service to aid clinical and translational research, and enable stratified medicine. As the lead industrial informatics partner, Aridhia is able to offer immediate solutions on a monthly subscription, without the need for investment in infrastructure.”]
Now I am not quite sure what “stratified medicine research” (Begg, 2015 – see above) actually is or could entail, but if it is about defining different types or classes of research (such as say,new-proactive; current-substantiateand old-modify) and then prioritising these differently, then I am fully supportive of stratified medicine research. Furthermore, I’d favour the following prioritisation for clinical and scientific research projects:
New-Proactive (focus on genomics and approaches that have long term health benefits or reduce costs long term, though there may even be increased short term costs)
Current-Substantiate (focus on demonstrating effectiveness of newly adopted protocols; further validation of current protocols; and collection of side-effect data on drug or procedural interventions, especially multiple-drug interactions)
Old-Modify (focus on minor improvements or reducing known non-life threatening side effects of treatment, especially for those diseases that are preventable by life-style interventions and may also be classified as age-related diseases or conditions)
If research could be classified in this way (or similar) and that it was prioritised as 1 > 2 > 3, then this would be a positive ‘driver’ for a switch to ‘preventative-type research’. Both Governments and Industry could further incentivise a shift-over by making research or development grant funding available using a similar order of priorities, or by allocations of specific percentages of ‘winning grants’ in line with world-agreed priorities eg 1 (60%) > 2 (30%) > 3 (10%). This would further promote a shift but also keep the ‘old model’ going as older researchers and research projects continue or are gently phased out. In addition, some research and its funding would still be required to monitor, evaluate and ‘tweak’ the previous ‘new’ work as it became the ‘old’ research and practice. This would be necessary even if monitoring and evaluation were embedded in new proposals for research or development grants.
In summary, in theNew NHSproactive and speculative research will play an increasingly important role in sub-serving the aim of decreasing the incidence and prevalence of disease. It will also aim to reduce the impact on patients of specific diseases that may have no cure or limited treatment potential. It will also be geared to seeking how to minimise the costs of diagnosis, screening and treatment, particularly of life-style related diseases.
The current trends in research funding will be reversed and research based on data and hard evidence (the numbers) and derived information should and will also be more prominent. Research funding and priorities will lead to the re-alignment of rewards for those undertaking research. The present categories of ‘weighted’ and ‘recognised’ (Citation compendia and ‘top-ranked’ journal articles) will need to be challenged. The use of big data (eg the genotypic library from the human genome project) and informatics will play an increasingly important role not only in new, personalised treatment but also in leading as well as intimating at research and potential research projects.
A methodology for determining the priority of these new categories of research will be needed, though at least two suggestions have been made here. Financing research and development will probably require more money than at present, and several options have been presented and explored. This will not necessarily be ‘new money’ though in the first and early years of transition this may be true. However, as the New NHSmatures and (hopefully) fewer patients develop diseases, or, at least, the same number of patients with fewer and less harmful symptoms should release ‘old money’ for newer treatments and new research.
And now, your prize (for reading the article).
As promised, here are your Easter eggs. They’re not exactly buried well, but I trusted you not to just skip to the end of the article after my tip-off earlier since you’d probably think that I would have a nefarious plan to ensure your uptake of my offer of “goodies for reading” wouldn’t be easy. If you are here already and haven’t read the rest of the forgoing text, then perhaps you’ll amuse me and read it anyway?
Those of you who have read all my blog entries may be aware that I have already briefly mentioned Keb’ Mo’, by name only (no music titles or sound bites offered). So, he is my first offering today.
Keb Mo from a little later than his first album (also Keb Mo, 1994).
Here’s a little background.Elaine and I first encountered Keb Mo (I’ve dropped full spelling from now on!) at Coromandel Blues festival in 2008, on North Island, Coromandel Peninsula, New Zealand. He was billed at about six down the list, on the main stage, on the last night which also featured Buddy Guy (top billing) and K T Tunstall (second up). It is fair to say that Keb, standing alone with an acoustic guitar and just the PA, absolutely ‘blew us away’ as well as all the other acts, in my opinion. We saw Keb play again in Melbourne in 2011, by which time I had purchased about 8 CDs from his back catalogue. There’s lots of goodies, but as a key sampler do have a listen to, “Am I wrong”, a fast moving track from his first and eponymous album. It’s amazing – again, in my opinion – though you may need to like blues music, at least somewhat, to even begin to agree!
My second choice is more straight forward, but only a little. We returned to the UK from Australia in 2012. Three months later I bought a sampler, triple CD album (“Latest & Greatest ACOUSTIC SONGS”, 2013) for only £5.99 from Tesco. It was going to be some further four months before we would be unpacking my precious hi-fi and collections of LPs and CDs and I simply couldn’t wait! Now who would have guessed that I would come to fall in love with three tracks, in particular from disc one, and that one of these would become my favourite on the whole album. Even I wouldn’t have believed it, in advance of listening anyway. However, the proof is in the listening: try Pixie Lott’s “Mama Do (uh oh, uh oh)”, Ryan Adam’s “Wonderwall” and Duffy’s “Mercy”. And the winner is… very difficult to pick!
Seriously, who would have thought an American could do a better version of “Wonderwall” than Oasis themselves, but it’s true! However, I give the prize to Pixie Lott for just surprizing me with an acoustic version of a song I know well but kept me wanting this version of “Mama Do” to continue just that little bit longer!
Today I thought I might be able to give science and Medicine a rest – after yesterday’s marathon on preventative treatment. My topic today is just as important – Menus and what flows from them, inevitably data and statistics. So first, why bother? Well actually, menus and the food we eat (or can’t eat) is pretty important to us cancer patients. When you are told you are going on a 4-6 months course of chemotherapy you attend briefings for all sorts of things. One of these is given by your own assigned dietician. Mine is called S and she is marvellous, very commonly exhorting me to drink my Ensure high calorie diet drinks as often as possible, especially immediately after I have had my Chemo day’s worth of intravenous medication, the E and O (Epirubicin and Oxaliplatin) of my EOX combo cocktail. Here’s what a bottle of Ensure looks like:
This one is vanilla flavoured and ‘milky’ to the taste buds (what’s left of them after being poisoned for about a fortnight after taking EOX). Doesn’t it look a harmless, inviting little thing? Well it’s not. Two days after you start consuming these things you become overwhelmed – they start to taste foul and sickly and the last thing you want to do is consume at least 1000-1500 calories-worth (about 4 -5 bottles). What do I do? You mean apart from skive and lie? Well now, I think I have found the answer, for me anyway. I pretend my ‘creamy’ ones are milk and then warm them up and pour the vanilla (Ensure) ‘milk’ over my Ready Brek, sprinkled randomly with Weetabix (my double blind controlled trial remember – c’mon, keep up!). Mix, et voila!, instant porridge with chemotherapeutic properties (kidding really!). But at least I get a shot of Ensure with least damage to appetite.
What else do I do? My dietician recommended I try pineapple which contains an ingredient that revives flagging taste buds. Mine flag from morning to night, let me tell you. If I’m eating pasta (in a tasty sauce, like bolognaise), with a plastic fork (to cut down on cold steel of an ordinary fork-induced cold, tingling sensational aftershocks from the side effect of Oxaliplatin), then if I ate the fork rather than a piece of pasta I wouldn’t be able to tell the difference! However, both the pineapple and plastic cutlery tips work – especially during the first 10 days of seriously bad after effects of Combo Chemo.
Effects on your partner are just as devastating. How would you feel after cooking a wonderful chicken gourmet meal in sauce with golden crispy, hand-crafted chips and beautiful freshly compiled salad and plonked it down in front of loved-one, to be then told, “I’m not keen on that smell; I’m not hungry now; could you take about two thirds of that off my plate”? You’d be pretty p****d-off, right? A small conflagration the size of the second world war might ensue, and a truce will be a long time in the offing? Am I right, am I right? Well who’s to blame – no-one, see! It’s that damned cancer again, and this time, it’s treatment with Chemo that is causing the grief. Trouble is, you can’t take it outside and give it what it’s been asking for. Nope, you both grin and bear it, and hope the other two thirds of that meal are not where the threat of being was – in the pooch’s belly (if you have one) or the back of fire (if you have one – we nearly do – a multi-fuel wood burner instead). But it does the job of being a threat alright! The rest of my menu? See below for stuff that works for me!
Wait 10 days – and all will be better with the world. Meantime, don’t weigh yourself, you will lose weight, it’s inevitable but your aim is to minimise the rate of loss. I like to think I’ll be at my last Pre-chemo body weight by about day 14 – gaining a fair bit from days 10 – 14. Weighing yourself is scary – another tip I learnt from my dietician, S. So, don’t do it – just eat what you can (and then some) whenever you can – even taking aboard another Ensure drink – this time a ‘juicy one’.
These are marginally better than the ‘milky’ ones, in my opinion. I try them neat (Yuk!); diluted like a cordial – better; and after 10 days are up and I can start on ‘cold’ stuff again – so, I might even try a ‘frozen lolly’ variant – neat tricks eh?
I take most of my calories as soup – home made, canned, pureed mealeven as I move to solids. But I really just long for the last ten days of the Chemo cycle when I can get back to ‘normal’ food as soon as possible. The one shining light I have to look forward to during this phase is that I am encouraged to eat as much chocolate as I like. Well, I do like, and I have just consumed the best treat of the last 3 months – a Cadbury’s Crème egg – courtesy of an Elaine treat on her return from her Saturday morning ‘Jazz’ exercise class. Damn -her, she’s so good and conscientious!
I think I’ll skip the statistics now – for today anyway. All this talk of food has made me feel like an early lunch! But, I’ll whet your appetites for numbers for tomorrow:
My reminder of a couple of days ago has certainly done wonders for visits to the Cancer Blog site. Yesterday (8 January) brought 21 visitors (from the UK, New Zealand, Vietnam, Australia, USA, Mexico and Spain) and 90 viewings of different blogs (an average of 4.6 per visitor). This is the second highest ever! Must be Ruthie Foster’s music, eh?
Well that’s all folks but here’s another female music artist I like a lot, Shawn Colvin. Try her early albums first and then work forwards. I’d recommend the 1992 CD “Fat City”, and the tracks 1, “Polaroids”, 3, “Tenderness On The Block, and 8, “Set The Prairie On Fire” as exemplars.
I’ll briefly repeat my 6 point (bullet) plan for the NHS to preface my focus for today’s section on 4. Preventative treatment.
Education – underpinned by philosophy
Screening – underpinned by data
Testing – from birth to death
Preventative treatment – promotion of healthy life styles
Research –on preventative medical conditions
Evaluation – led by self-scrutiny
4. Preventative treatment – promotion of healthy life styles
We are now moving into the phase of considering solutionsto the problems posed by the current inadequately designed NHS system. I want to explore some of these solutions in some detail whilst eliciting a longer list that I and you together are able to compile for further consideration.
Did you know that between 1 and 10% of the population may not have the father they think they do? This includes many whose mother is aware of the facts but also some who are equally in the dark! How do we know this? Well, in the heat of the scare of the threat of Acquired Immunodeficiency Syndrome (AIDS) quite a few facts that probably shouldn’t did emerge, including some blood grouping data (legitimately undertaken for obvious reasons) but which revealed that some haemophiliacs and other ‘high risk’ groups tested for Human Immunodeficiency Virus (HIV) and AIDS had ‘impossible blood group types’, based upon parental blood group matching. I will not insult you by explaining why this is possible, but look to nature’s driving forces for a clue!
So what, you say? I say this is a big deal. Without accurate genetic data on individuals it is very easy to make errors of judgement when making decisions about treatments of people with illnesses. I think this strengthens my case for global genetic typing of individuals at birth and providing this information as accessibly as possible (to relevant parties (eg Medical professionals) but keeping it well away from others (eg Health and actuarial insurance companies).
I say these things because I believe we need desperately to move to a system of preventative medicine coupled to promotion of healthy life styles, and mass screening, where relevant. Let’s look at a couple of examples but before we do it’s time for a tune!
I have noticed I have been very amiss in representing the female side of even my own record collection so I’d like to put the record (pardon the pun!) straight by sharing my enthusiasm for three female artists from the last six decades of rock and popular music. First, Joni Mitchell. I particularly like her Jazz era but I’ll start instead with one of her 60s hits (“Chelsea Morning”, Track 2, Side one from the album, “Clouds”, 1969). Marvellous song and brings to mind a trip to London only a year later I took to protest about cuts in government spending on higher education. Whatever happened to politicised students and student unions that did things?
My second choice is Joan Armatrading from the 80s onwards who inspired a generation including Tracy Chapman (sadly not one of my three) – but is one of three black women who I admire greatly. The third is Ruthie Foster whom most of you will not know but has become my favourite female artist of all time (not an easy decision) for her range of eclectic music tastes, her vocal range and the range of her resilience to be almost unknown in her country (USA) and yet admired by a select bunch of us, who think she should be better recognised. I have seen her play live in Melbourne and in Glasgow – brilliant.
Returning to Joan Armatrading, what track would you choose– again not easy? I am going for “Me, Myself, I”, from her eponymous LP of 1980. This song has particular poignancy right now, as whilst I am totally committed to team work, there comes a point, like now for me and this damned cancer, where all you have to rely on is yourself. I think the triple assertion of the title of Joan Armatrading’s song underpins my current views precisely. So, despite all the wonderful assistance and well wishes from all of you I am, unfortunately, going to have to rely on me, myself and I to get over the final hurdle.
And so, to Ruthie Foster – only one track represents the lot – blues, jazz rock, guitar solos, pathos and her own song writing: “Lost In the City”, from her compilation CD, “Stages”, 2004). And if her range isn’t wide enough take a listen to her definitive (in my opinion) Reggae track (“Real Love”) and an amazingly insightful gospel song, “Church” (both on the same album, “Stages”).
And so, back to Section 4.
Preventative treatment and promotion of healthy life styles.
As you will note, although I have divided this plan into six sections they are all intimately linked and the integrated plan should be read as a whole. I’ll provide a summary (with diagram) at the end. Hence, this section should be read very closely together with sections 2, 3 and 6 as screening and a more open, personal approach to evaluation will provide underpinnings to the basis for adopting a preventative treatment programme.
Early diagnosis for a healthy population – the key.
Let us take one of my own examples (I have or have had plenty to chose from!) to commence. During the course of my stomach illness prior to being diagnosed with stomach cancer I was variously treated for over-acid production and gastric reflux into my oesophagus, gastric ulcer or suspected ulcers, and helicobacter pylori. In the early part of this phase of what now turns out to be gastric cancer, I was never once given a physical examination involving palpation or feeling for lumps. Even if present, they may have been too small to detect and my treatment would have proceeded the same way. However, this simple procedure would have detected much larger lumps and I could have been on my way to an early diagnosis – something the government and NHS say they want to happen – for patient health and to make financial savings.
I was given Omeprazole, a Proton Pump Inhibitor (PPI), but not the one that scares banks (Payment Protection Insurance). This seemed to work (for a short time) and I was quickly taken off it. However, the pain recurred some few weeks later and I was put back on it. At the time I was told that I might have helicobacter pylori and a schedule of treatment would be designed so that this could also be screened for. I was also told that I could also have endoscopy which would be confirmatory. Now, as I have said before I am not saying that mistakes were made, so that is not my point here, but in the end I had to have an endoscopy as well as a CT scan, no doubt at some cost, and this was already in addition to the cost of drugs as well as GP time (three visits) to my surgery. This, in my view, is a classic case where an apparently expensive investment up front (gastroscopy in this case) might have not only been a better medical decision (for me) but also a cheaper one if it had detected my cancer or early lesions in a timely manner – in other words, early detection of disease. This is the key.
Early detection is good for all concerned– most importantly the patient, but secondly doctors and GPs (their success rates are better), the NHS (it is cheaper in the long term) and governments – it saves money and the service is both more effective and efficient (normally nearly impossible to achieve) in the long run. As little as a month later I visited the surgery again (my own actual GP this time) overwhelmed with pain. Dr M reviewed my case and treatment and then gave me a physical examination and immediately detected a large lump in my abdomen. He pointed for me to feel it (which I did) and he said that we have to consider this may be a tumour and ordered a CT scan and gastroscopy immediately. These took 2-3 weeks to be scheduled but at least I was now on my way – with the right diagnosis, but too late in my opinion, and after other costly treatments.
Please see Appendix I for supportive government information regarding proactive approaches to healthcare.
Education, education education
My second example focuses on education. I have already mentioned the many patients that accumulate in a very attractive outdoor garden at the main entrance to Ninewells hospital smoking in a very clearly demarcated area designated as ‘non-smoking’. These same people are often visited and supported by friends and relatives that also smoke and who both with their loved-one or family member, the “patient”, may already be an amputee. Now, I have not checked and there may be other reasons for the amputation but it is common that smoking is associated with heart and circulatory disease which my lead to blood clotting, particularly in the leg veins, and even result in amputation if the leg cannot recover from treatment with clot-busting drugs.
Is this not a case for more education for family membersas well as patients to warn of the dangers of continuing with bad or even life-threatening behaviours and habits particularly when good options for reducing the offending behaviour are available (eg reducing smoke/nicoteen dependence through patches or nicorette gum; using e-cigarettes; stop being a poor role model for family members, especially young impressionable minds of off-spring). None of this is easy and maybe other measures are required such as a ‘one-off warnings’ that continued bad habits might (would definitely?) limit further treatment and access to both GP and hospital medical services, and social services. This may sound drastic or draconian but what else will our increasingly ‘pushed’ NHS do anyway?
As demand not only rises but places unfair decisions at the door of overworked medical, nursing and other carer staff then not all demands will be met, not only short term but also long term. Prioritisation and limiting access to ‘deserving’ patients may become the norm. Making decisions about such cases will increase tensions on medical services, particulaly consultants, who will have to deal with an increasing ethical workload as well as a medical one. This has implications for the medical curriculum as all doctors, including established GPs and hospital staff as well as those in training (students, house officers, senior house officers, registrars, senior registrars) will need to be better equipped to be able to take decisions that save lives and others that may cost them.
My third example draws on the link of this programme with the sixth step:
“Evaluation – led by self scrutiny”.
In higher education we have been wrestling with learning and teaching evaluation for more than two decades – at institutional level with Enhancement-Led Institutional Review (ELIR) and more locally at Departmental review and course and module reviews. The most difficult topic remains at a personal level through teaching reviews. These might include 360 degree appraisal, peer review of teaching, self review of teaching and even the preparation of teaching profiles and portfolios for ‘probation’, ‘continuation’ and ‘promotion’ and even accreditation (eg the Higher Education Academy HEA membership and fellowship schemes). There is still no requirement for a teacher in higher education (HE) to have a teaching qualification (or experience) before taking their first class!
I believe the sequence described lies at the heart of the difficulty in getting all evaluation right. Perhaps if we focused more on self-evaluation with a strong emphasis on openness, honesty and critical friends to corroborate or verify (or deny) these self diagnoses then the flow back up the sequence to ELIR or institutional level review would be much easier and testable. I think the latter is still true in Medicine although the concept of the reflective practitioner and critical friends whether pairs (eg Mentors and line managers) or groups (eg Multi-disciplinary Teams, MDTs) is much more established. Perhaps it still isn’t working as well as it should.
There is a lot of past as well as current evidence that this is the case. The example of Harold Shipman springs to mind. Also, there is the disturbing fictional series, “Bodies”, featuring a Consultant surgeon and a keen, honest junior doctor working alongside him. His attempts to whistle-blow on his superior, the surgeon, were thwarted by the power differential of the boss-report relationship and by the fear of other staff, well aware of the situation, to do anything about the errant consultant or even support their junior colleague. The abuse from above by the consultant was astonishing. Surely, it can’t be like this in real life, can it?
The culture must change. Honest, blunt communication sometimes is what is needed. This must be a responsibility of patients and medical and social care staff alike if the system is to work. Hierarchies are inherently non-permissive for such exchanges but this must be tackled and changed in the New NHS. Staff need to be able to self-diagnose their own mistakes, listen to feedback from others (patients as well as colleagues) and then act upon it. Rewards for staff for their openness and honesty need to be geared towards this approach rather than only rewarding good work or excellence. The latter must still happen but it needs re-balancing. My own consultant, thus far, has demonstrated these qualities aplenty, though I do hope still to persuade him that I should be considered to be a “curative care” rather than a “palliative care” patient. Also, I do wonder what discussions, if any, have taken place at my own GP surgery amongst all the doctors who dealt with my case.
In the last three days I have just become aware of the government’s own review of the NHS and its intention to provide a more proactive, health and well-being oriented service. These are the key issues and the date and agenda for the first conference arising from the review.
[NHS Five Year Plan: Responding to the Prevention Challenge -22nd March 2016, Royal National Hotel London
One year on since the NHS Five Year Forward View was published, the roadmap for change is taking traction with new initiatives and projects helping to secure the future of the nation’s healthcare system. The NHS Five Year Plan: Responding to the Prevention Challenge conference will explore how to make the NHS sustainable by incentivising and supporting healthier lifestyles. A key element at the heart of the 5YFV is prevention of long term conditions and promotion of good health and wellbeing. Our agenda aims to support the NHS and wider health economy, at a local and national level, to build a more proactive society, prioritising health and wellbeing and reducing the impact of lifestyle related health problems.
The future of the NHS, improving the quality and access to health services and supporting a healthier population all depend on a radical upgrade in prevention and public health strategies. NHS England recognises that more needs to be done to respond to the prevention challenge. The NHS Prevention Programme Board, which was established in January 2015, has made a strong start in getting serious about prevention. Evidence shows that by investing in early interventions greater costs can be reduced further down the care pathway, however, this approach requires joined-up care and treatment, often across a range of service providers, that is centred around a patient’s needs. Following the Five Year Forward View how will new models of care drive better outcomes for patients and for the health system?
Join us for the opportunity to learn about the key activities and priorities for responding to the prevention and public health agenda, providing strategic direction and oversight to stimulate national action on the wider determinants of health. The NHS Five Year Plan: Responding to the Prevention Challenge will give you the opportunity to build contacts and benefit from knowledge sharing and networking to respond to the prevention challenge.]
09:30 Keynote Address
Simon Stevens, Chief Executive, NHS England (invited)
‘Getting Serious about Prevention’
NHS England recognises that more needs to be done to respond to the prevention challenge. The NHS Prevention Programme Board, which was established in January 2015, has made a strong start in getting serious about prevention. Evidence shows that by investing in early interventions greater costs can be reduced further down the care pathway, however, this approach requires joined-up care and treatment, often across a range of service providers, that is centred around a patient’s needs.
09:50 Professor Kate Ardern, Director of Public Health, Wigan Council (invited)
‘Prevention Policy in Practice’
A key element at the heart of the 5YFV is prevention of long term conditions and promotion of good health and wellbeing. The key for stakeholders, at a local and national level, is to build a more proactive society, prioritising health and wellbeing and reducing the impact of lifestyle related health problems.
10:10 Sharing Best Practice
Dr Diane Reeves, Chief Accountable Officer, Birmingham South Central Clinical Commissioning Group (CCG) (confirmed)
‘Diabetes, an Early Priority’
More people in Birmingham are set to avoid developing diabetes as a local clinical commissioning group has been chosen to pilot a national diabetes prevention scheme. The NHS Diabetes Prevention Programme was an early priority for the Prevention Board. Type 2 diabetes is one the biggest public health challenges of our time, costing the NHS £8.8bn a year. However, the World Health Organisation (WHO) estimates that 80% of Type 2 diabetes cases are preventable.
10:30 Main Sponsor
10:50 Question and Answer Session
11:00 Coffee in the Networking Area
11:45 Case Study
12:05 Dr Debbie Smith, Lecturer in Health Psychology, University of Manchester (confirmed)
‘Behaviour and Lifestyle Change’
This presentation will explore the benefits that a behavioural change could have in terms of improve outcomes and reduce costs in the short-medium term. Supporting healthier lifestyles could help to reduce risk factors through a focus on healthy eating, physical activity and positive mental health.
12:25 Sharing Best Practice
Phil Veasey, Public Health and Community Engagement Associate, C3 Collaborating for Health (confirmed)
‘The Realities and Practicalities in Exercise for Health’
A key element at the heart of the 5YFV is prevention of long term conditions and promotion of good health and wellbeing. Our agenda aims to support the NHS and wider health economy, at a local and national level, to build a more proactive society, prioritising health and wellbeing and reducing the impact of lifestyle related health problems.
12:45 Case Study
13:05 Question and Answer Session
13:15 Lunch in the Networking Area
14:15 Chair’s Afternoon Address
14:20 Case Study
14:40 Pinki Sahota, Chair, Association for the Study of Obesity (invited)
‘Bringing Obesity Up the National Agenda’
Action on obesity can have short-term and well as long-term benefits, underlining the importance of bringing obesity up the national agenda. The NHS Prevention Board will continue to play an active role in the wider prevention debate, providing strategic direction and oversight to stimulate national action on obesity.
15:00 Danny Mortimer, Chief Executive of NHS Employers (invited)
‘NHS Workforce – Role Models for Healthy Lifestyles’
Improving the health of the workforce of the NHS is another key priority with NHS England pledging £5 million for a programme of work designed to develop and support new workplace incentives to promote employee health and to cut sickness-related absence. Prevention is cheaper than cure and supporting people to manage their own health and healthcare can both improve outcomes and reduce costs.
15:20 Question and Answer Session
15:30 Panel Discussion
‘Collaboration to Promote Healthier Communities’
The 5YFV argues that large scale system change can only be achieved in collaboration with other key players. Delivery of a successful prevention strategy will require concerted action from individuals, local government and other public, private and third sector bodies alongside the health service. How can such integrated working be achieved?
Michele Moran, Chief Executive, Manchester Mental Health Social Care Trust (invited)
Councillor Richard Leese, Leader Manchester City Council (invited)
Alistair Smyth, Head of Policy, National Housing Federation (confirmed)
Dr Diane Reeves, Chief Accountable Officer, Birmingham South Central Clinical Commissioning Group (CCG) (confirmed)
Professor Kate Ardern,Director of Public Health, Wigan Council (invited)
How are the Four Musketeers coping now with the celebrity and high of Christmas coming? My guess is D’Artagnan (Ian) is still in search of the elusive, American dream (no bad thing). Athos (Will) will still be seeking a women of a certain age (usually 20 years younger than his good self – she’d better not be any less than 18 but he wisely picks his third wife as a stabiliser. His own natural pick (and shovel !) – his type, has long gone, so maybe the settled, relaxed life is more for him than he cares to admit. It’s pointless now anyway, the “brownie pointless” striving for what doesn’t really exist, it is much more smoke and mirrors and life seems to be getting too short for mistakes that last too long ie ‘Pointless’. “Pointless”, now there’s a little game show I couldn’t get in to for a while and now I’m hooked! Lovely Alexander Armstrong and the gigantic (6 Ft 9in) and brainy, Richard Osman.
As for Porthos (Nigel), age and multiple episodes of unfortunate ill health have left Nig as adorable as ever, but treading carefully with heart issues. However, after the reviving banter of the weekend and the re-union, the 4 Mouseketeers do indeed ride again. Here’s some photographic proof! A summer re-reunion may be on the cards!
Everyone of my musical heroes apart from the 27 year old “early death club” (Brian Jones, Janis Joplin, Jimi Hendrix, Nick Drake, Jim Morrison, Keith Moon, Kurt Cobain, Amy Winehouse), have found a means of cracking some code for survival, often in what now looks like a transfused, cadaverous shell, perhaps rejuvenated by the smell of, the taste of, and actual blood!) Come to think of it, I could do with a little haemoglobin top-up myself.
Here’s a few of these long term survivors:
BB King, Bob Dylan, Hank Marvin, Cliff Richard, Tom Jones,John Mayall, Jeff Beck, Eric Clapton, Ginger Baker, Jack Bruce (d. 2015), Spencer Davis and Stevie Winwood,(Traffic, Blind Faith) Eric Burden, Long John Baldry, Rod Stewart, Ron Wood, Stevie Marriot (The Small Faces and Faces), Georgie Fame, Mick Jagger, Paul McCartney, Van Morrison, Brian Wilson, Dave Crosby, Stephen Stills, Graham Nash, Neil Young, (CSNY), Linda Rondstat, Jimmy Page, Peter Green(baum), Ian Anderson (Jethro Tull) and Mick Abrahams (Jethro Tull and Blodwyn Pig), Paul Rogers, Andy Fraser (d, 2015) both of Free, Chris Rea, Mark Knopfler, Nanci Griffiths, Brian Ferry, The Who’s Pete Townshend and Roger Daltry, Sting, Eric Bibb, Keb’ ‘Mo’, Joni Mitchell, Jackson Browne, The Eagles, etc… where do you stop?
Peter Green(baum) in his Peter Green’s Fleetwood Mac days (1968)
I’ll briefly repeat my 6 point (bullet) plan for the NHS to preface my focus for today’s section on 3 Testing.
Education – underpinned by philosophy
Screening – underpinned by data
Testing – from birth to death
Preventative treatment – promotion of healthy life styles
Research –on preventative medical conditions
Evaluation – led by self-scrutiny
“Testing – from distinction (birth) to extinction (death)”
Well, what I want to try to do today is to explore the theoretical, practical, ethical and moral issues, as well as the financial implications for the people, (patients, doctors and scientists, test developers, manufacturers and distributors, and those further downstream companies, governments and crucially, the people being asked to pay for all such services and other off-shoots, some of which are yet to be even dreamt about) , that do or could shape a framework for what has become one of Medicine’s 20th and 21st Centuries’ most controversial topics, and will become an even greater debate –Testing. Some sentence, eh?
What is testing?
This includes tests used in screening, or ‘speculation tests’ as I’d refer to them, as well as a vast array of actually deliberately used tests as applied to ‘a known patients’ screening profile or ‘work-up’. In other words, at least for patients receiving care or treatment already, tests are part what is done (blood, urine, sperm/semen, saliva, poo, commonly, and less commonly, bone marrow, respiratory aspirate, skin, spinal fluid, amniotic fluid and vaginal scrapings –only if you are female), to make up a range (incomplete) of such samples. For example, someone who suspects they may have become infected, perhaps with Human Immunodeficiency Virus (HIV), as a result of “a good night out and wanton appetite”, may decide to take themselves off for an “Acquired Immuno-Deficiency Syndrome” (AIDS) test to “re-assure themselves”. They’d be disappointed because they would be unlikely to show signs of AIDS at all, let alone after a couple of days, say! The HIV test, however, could be positive and this could predict the future, if not entirely accurately!
Early Government Advertising – warning about dangers of AIDS
Not all tests for every possible condition that could be tested would be tested, but you’d be surprised how much data is collected every time you meet and speak with a NHSHCP! Just ask F, finishing up her shift at the end of the working day. Just look at my notebook I have in hospital, making notes of every pulse, blood pressure and temperature reading, sometimes taken every 30 minutes, sometimes every 60 minutes – even during transfusion of packed red cells for alleviating my temporary (I hope!) anaemia, and to restore my haemoglobin levels and give me a little, if not entirely normal, increase in energy capacity for exercise, resisting the cancer growth or, walking down the corridor for No. 6/4 buzz cut, or whatever!
I have covered the issue of screen-testing specifically so I will try not to repeat this aspect again and focus instead on the broader implications. I have made specific mention of the idea of testing from Birth to Death. What again do I mean? Already, the new born are “tested”, usually a ‘heel prick to obtain a small sample of blood alright but also large enough to generate a lot of data but most often to obtain a bilirubin measurement to reveal whether there may be ongoing destruction of the child’s erythrocytes (red cells) because of maternal antibodies attacking the new born’s ‘foreign’ red cells via attachment to surface glycoproteins such as Rhesus (Rh) antigen, particularly when the mother is Rh -ve and the new baby is Rh +ve. Mum gets a shot in the ass (USA style) if this is the case and no. 2 or no. 3 etc babies become protected against subsequent mum attacks! Alternatively, the bilirubin could also indicate that there may be a liver problem – so, all that delayed onset crying is worth it! A good test – two potential shots (accurate and reliable ones) for the price of one!
A good test is one where “it does what it says on the tin”, measures what it is supposed to – say blood glucose, via a measuring device and ‘strips’ (Blog 23). This is a theoretical minimum, but it is not sufficient. For example, there’s a test that is often carried out on us men who feel that we may be having problems with our Prostate gland and water-works, (a walnut shaped object – no shell thankfully!) wrapped around our urethra which emerges from the urinary bladder. When it enlarges (most old men such as my good self!) it causes funny patterns of pissing! (Time variations, volume variations – including none – even when you think you are bursting silly), not “over the wall wins”!). One test that is used to check whether we may be having problems is the PSA test. Blood is taken and levels of Prostate Specific Antigen (PSA)are determined. I know, I have an enlarged prostate, and take yet another pill, Finastaride, for it every day – on top of my other 9 medications! Anyway, PSA levels are not sufficiently accurate or reliable. There’s a combination of too many false positives – worrying people unnecessarily, and too many false negatives – where too many people get re-assurance, in error, and may not follow up on other positive symptoms. This is the worst of both worlds and demonstrates that a test must have a high level of discrimination to be good; to be effective at what it is supposed to do and minimise the number of people potentially adversely affected.
So we have lots of tests already and there’s likely to be whole lot more coming (and many are already here though you may never have heard of them). For example, in a later Blog I’ll try to explain a little more about all the Scans I have already had, and even more about some of the ones I may yet have such as The PET scan, MRI scan, PET CT scan and so on. However, that is for later. What I want to focus on specifically is the idea of “routine” testing from birth (distinction) to death (extinction). I have already mentioned screening and testing.
What if testing of anyone’s DNA (our genetic code or ‘blueprint’) becomes so accurate, reliable and inexpensive that it becomes possible to produce a full profile of every individual on the planet (at birth) from a heel-blood collection device that looks like a piece of Velcro and baby doesn’t feel it even? The information can be recorded digitally and even placed on a chip which we could carry around with us on a Credit Card type device or a bracelet (like diabetics). This could be linked to our National Insurance, Hospital or ID card and with a swipe of entering a hospital a NHSHCP could access key information about us to help them treat us in an emergency, say! There’s a problem straight away! Why can’t we have only one means (alphanumeric symbols) of identifying ourselves? No mix ups -great! I am not with the il-liberal personal information protection lobby on this issue! One person, one card, one 12 digit encrypted digital signature!
Further data can be added throughout lifeand contribute to a rich source of our personal medical and scientific data all designed to predict, anticipate, determine and perhaps treat any likely future health condition. For example, about three years ago I finally returned to the UK from Australia and I was still being treated with Warfarin (yes, rat poison) to inhibit blood clotting (Blood thinners- though not like paint thinners!), that had caused me to have two DVTs in my same lower left leg. Deep Vein Thrombosis (DVT) can be lethal even after one event, especially if a small portion of blood clot detaches from the main site and is carried to the brain (stroke) or heart (attack) say. It turns out, after DNA testing on me that I had a genetic condition, Factor V Leiden – an abnormal type protein that contributes to the (abnormal in my case) clotting which follows cutting yourself shaving. I thought my favourite sister-in-law (for tonight only), Jacqueline, might say I was excluding the ladies there for a brief moment of panic (Good conscience, Jacqueline!). However, I realise how Neanderthal I was, of course ladies shave their bits too, and too much, too often, if you ask me?
Had I known that I had inherited one defective gene from either mum or Dad, (I am heterozygous for the condition), then I could have helped out the haematologists in the hospital deal with my own DVT better. But I wouldn’t have needed to under the new system. This information would have been entered onto my records shortly after birth. Of course there’ll be new stuff being discovered all the time, and we will need to have a global economy in sharing advances and for free! And this is my vision of the future.
What about the money I hear you say!?
So now we must mention the elephant in the room! As with screening, testing (especially, if as I suggest, we view this as a lifelong process), must be done, right? And it is going to cost someone!As one of my fellow Geordie travellers, Sting, would say (but I also take good ‘odds-on‘ for other Geordies Eric Burdon, Chas Chandler, Chris Rea, Mark Knofpler, and Brian Ferry), ‘If you love somebody, set them free’, (Best of Sting, Fields of Gold, 1984 – 1994). Protecting my own information is not a priority for me. Ask yourself, if you disagree with me, why isn’t it for me too? I’d be interested in your comments in the ‘leave a reply’ section of this blog!
Sting with it all on!
Yes, we still have a problem Houston. Everyone is dead or dying my be and who is gonnando what ? Could we get a philanthopist or several to club togethet and to underwritebsuch an task sponsored by Gloria Gaynor concerts maybe?), and remenber, somebody is gonna have to pay!
Gloria Gaynor “I will Survive”, Accessed: , 15 December 2015.
So what about the money!
Actually the circle can be drawn very tightly indeed but it is going to depend on reaching conclusions and then taking actions about defining who pays (and who dis’nee! – a wee bit of Scottish there), according to Kev.i.am Bridges, is an ongoing challenge to central UK as well as Scottish parliamentary parties and their policies to deal with the consequences of astronomic levels of debt (1.5 Trillion in the UK, that is 1,500,000,000,000,000,000 (I think, or give or take 3 noughts depending upon British or American definitions of billions!). Governments (of any persuasion) would much rather us not talk about this financial measure (disturbing as it is), but rather, talk about the British Deficit instead.
The ‘deficit’ is a quantum-sized amount of money compared to our total debt, but it is what all political parties across the whole UK were bickering about in their various political manifestos that were written to underpin the financing of ‘their government’ (if successfully elected as such) to implement their values, their mission, their spending, their ‘cuts’, ‘their balancing of the ‘books’’, and how quickly and/or deeply to hit different compartments of the nation’s population to pay for, or to receive it.
Let’s look at the simplest model. Most of us who have to manage a budget could envisage getting a ‘handle‘ on the job. My household has a total income. We spend that on the rent/mortgage, food, power, stuff – including on ‘bucket lists’ (Morgan Freeman and Jack Nicholson) as well as essentials and a few frills (tattoos, a download, cheese and chips or even savings, if we are really lucky!).
Morgan Freeman and Jack Nicholson in “Bucket List”, (2007).
Jack Nicholson getting his own Buzz cut – I’m guessing a No. 3 all over!
In summary, we have ‘outgoings’. In my traditional 1950s ‘mind-set’ my aim was always to ‘balance the books’ – only spend as much as I earn and save a bit towards a future mortgage to purchase a property (and some more power tools and a staple gun!). Of course even if I managed to secure a mortgage from a bank (orBuilding Society in my day), this then became (usually) my biggest ‘debt’ (though I had this rather nice BMW 520 series once!) and servicing that debt (my agreed interest payments, for how long etc) then contributed to my outgoings (as well as my big debt!), giving me my ‘overall’ debt (The British 1.5 Trillion GBP equivalent!). Now that is the one I worry about and governments should worry about theirs too!
At Government level, Chancellors and their teams juggle the income (Tax ‘gather’) and outgoing spending (Tax spend). The difference between these two measures is known as the deficit or surplus– again depending. Most British Governments have run a deficit. The most recent debate involves the newly elected Tory government’s intention to reduce spending and engage in debt reduction as quickly as possible. This ‘tinkering’ with the budget – especially when it affects ‘dear-to-heart’ items such as the Welfare state, Education, The National Health Service (NHS), Work and Pensions, Defence etc. is very controversial. The House of Lords recently sent the Chancellor, George Osborne, with his tail between his legs, to revise his budget statement to implement cuts ahead of compensation in his unfair tax on welfare payments!
So how do we go about it? Once again I want to hear more of your views but here is a starter:
We need a fully comprehensive insurance-based health plan for all global citizens. This is completely underwritten by Governments but money is raised in lots of creative ways. This would include raising levies (taxes or whatever) on known (or even suspected) harmful substances such as sugar in soft drinks, or smoking, to add extra funding to a much larger share of the tax spend for Health and Welfare. Positive measures could include giving all multi-national companies no choice but to pay their fair share of tax wherever they set up their Tax havens. There should be no escape. Global governments will take their 10% or 20% or 30% or whatever tax percentage ‘pays’ companies not to try and avoid or evade, or face the same bill in fines. And,it will not be possible to write it off against tax in future either! This is the original Parkinson’s Law on Tax. We can’t blame companies for working within the law on tax avoidance; I mean who likes to pay their taxes? Me right? No, me wrong! But I don’t have choice, I am a pensioner on a fixed income all sorted through the PAYE (Pay as You Earn) scheme.
Governments must not give Companies a choice either. Tax legislation needs to be changed and we must get Insurance and Investment Bankers and others out of the corridors of TAX haven power to influence legislation – like having a Vampire in charge of the blood bank. Yes, they have an interest alright – but an unhealthy one, in my view!
Governments must take charge and get a few (actually, make that a lot!) of unemployed people on these committees. If anyone knows how to exploit loopholes then, according to the Government, they do – cos they certainly disproportionally punish them! And having put in place a new legislation it must be ‘future-proofed’. We need an instantly enacted loop-hole closure clause for any future loop-hole discovered by a clever-dick insurance or (b?)anking person. We will have our fair share of company profits!
I don’t believe this will scatter bankers to other countries as claimed by right wing pundits whenever taxing the rich comes up. It is bluff! They want to live here alright, in close proximity to Government ministers, especially the teams surrounding tax legislation – check out, Owen Jones’, a left wing writer for the Guardian. For example,
Don’t sneer at redbrick revolutionaries – some of our best leaders were terrible students
How old is this Oxford trained, fresh-faced yet white hot Guardian politician, Owen Jones who wrote CHAVS , “whatever happenned to the working class?” as well as ,”The Establishment: And how they get away with it”, March, 2015.
Long live the NHS, But not as we know it!
Tomorrow I am having some me-time! Both Steeds are going to the Blacksmiths to be re-shod with smart new winter hooves’ protectors! And I get to drive the new BMW steed properly!
Au revoir! Bon Nuit – and all that Franglais stuff!
In the end I skipped yesterday’s blog (Friday), so very early good morning to y’all, folks – it’s only 02:50 am – but I can’t sleep so what the hell, write, eh?
I’ll briefly repeat my 6 point (bullet) plan for the NHS to preface my focus for today’s section on 2. Screening.
Education – underpinned by philosophy
Screening – underpinned by data
Testing – from birth to death
Preventative treatment – promotion of healthy life styles
Research –on preventative medical conditions
Evaluation – led by self-scrutiny
2. Screening – secret decision making?
Well, what I want to try to do today is to provide a few examples of where medical decisions about use of screening tests and procedures are made with the best of intentions, but in the long term may prove medically and technically inaccurate but also financially disastrous – even by ‘back of the envelope’ standards of accounting!
So, what do I mean by screening? Screening is a process usually used on large populations of people or patients to detect or determine whether disease already exists, or is likely in the near future, and designed to reduce the expensive costs of treatment very early on and before the onset of actual disease which is often more expensive to treat later – such as stomach cancer.
Cancer Research UK advert (Accessed 11 December 2015, https://www.youtube.com/watch?v=5JjA9XRT71c ) showing disregard for an obviously growing lump. Self-screening is not only possible but should be absolutely mandatory in our new liberal proactive NHS!
The presence or absence, or level, of a direct or an indirect marker of an illness or condition are used to determine patient management. You may be part of the National bowel cancer screening programme, I am! Every six months or so I receive a neatly wrapped pack from the NHS encouraging me to deposit a small knob of my mid-squeeze poo from a sterilised stick on to a little tray with a fold-over flap to cover it afterwards. I do this three days running and then send off the kit to the National Bowel Cancer screening programme. Some few weeks later, thus far, I get a letter telling me, “I’m clear”! No blood in my Poo, I suspect! Let’s look at a few other examples.
My darling daughter, Ellen, is a Type 1 diabetic, and has been since she was diagnosed as a 17 year old in 2001. She relies totally upon human – derived insulin, prepared using technology that owes its existence to early pioneering research commencing with Banting (Frederick G), a surgeon, and Best (Charles) a medical student (1921), though Banting and Macleod (ProfJohn), received the 1923 Nobel Laureate for their collective work, including that of the fourth member of the team, Collip (Bertram), Biochemist and purifier of insulin from pancreas extracts. Some things never change!
Banting and Best at the University of Toronto, Canada, 1921
The recombinant, human Deoxyribo-Nucleic Acid rhDNA -derived protein synthesised from the correct sequence of amino acids that comprise the 2 chains of three dimensional peptide monomers (proteins: 1 alpha- and 1 beta- chain) are now the ‘pure’ human protein insulin required to regulate blood glucose. It is much more effective than porcine –derived insulin, a more commonly used product when my own sister, Val, was diagnosed with Type 1 Diabetes whilst only 11 years old (1965).
Ellen has to test her blood sugar prior to the injection of insulin into subcutaneous connective tissue, in order to determine the correct insulin dose. It is now much easier and more convenient to do this using sophisticated blood glucose monitors which use ‘test-strips’. Now these are not cheap, £25-30 for 50 strips but are thankfully free to all diabetic patients on the NHS, as are all prescriptions for people living in Scotland.
A few years ago Ellen moved to a new flat in Glasgow and immediately joined her local clinic. When she called into register as a new patient/resident and to renew her prescription for these strips she asked for her usual amount (about 200, I think). She uses 5-8 per day following her consultant’s guidance.
Initially, she was told she couldn’t have this amount and was asked why she needed so many at one time. Ellen explained that she could use up to 10 strips in one day and had been previously told by her diabetic nurse that better quality monitoring of her blood sugar helps minimising elevated or wildly fluctuating blood sugar and thus reduces the risk of long term complications such as long term chronic heart disease and circulatory problems.
She was referred to the GP’s own diabetic nurse by the receptionist, who eventually agreed to the increased amount but the whole process seemed counter intuitive … And it is undoubtedly an example of simply postponing sensible investment in long term preventative care.
My own sister, Val, died needlessly young earlier this year following years of such complications including damage to limb extremities (Not Head, but Hands and Feet! – see Blog 6) ultimately requiring surgery; but also triple by-pass surgery on her heart, and not infrequent ischaemic heart attacks. She had a couple of strokes in her last fortnight, and died of a final heart attack on 27 August 2015 (b 3 September, 1955).
Such a waste, and guess what? If you do the sums (Math, for our USA colonial cousins!)on a spreadsheet like I have, (‘cos I’m pretty good at that, recallBlog 19!), then the all- too human reaction of rejecting an initial request for something that ‘appears’ expensive can be avoided. Honestly, the price differential is something like at least a 1000 fold. We could even devise an algorithm to determine the likely savings of providing patients with exactly what they need, right now – despite apparent additional, though often superficially higher, but not real costs; or at least compared to real costs that must be incurred because ‘normal routine’ situations become emergencies – and I find no complaint there, all the stops and probably money too, come out to save you from the brink then! So at best,costs are deferred, and at worst, well …. Do you really need me to spell it out!?
And who is making these decisions about patients’ requests on the front line? Often it is receptionists, in my experience. Classically, this is not their fault or responsibility. Rather, it is their implementation of a General Practice (GP) procedure or rule – and part of what I call ‘poor Screening attitudes towards genuine patients’. This inadvertent policy or practice (or both) probably includes more pain and suffering, and even less gain, eventually! So it sometimes seems nonsense to me and almost always results in conflict in GP surgeries and desk areas! Does it make sense to you? I doubt it is even recognisable amongst NHS senior managers and it is certainly not a formal “Policy”. May be, it is simply one of the things that just don’t get enough attention – Complacency should not rule, OK?
Patients generally do not want to cost the NHS a lot of money, but they do want common sense to be applied at all times, and also want their Consultant’s plans to be followed and implemented by allNational Health Service Care Staff (NHSCS) in the chain of command affecting them and their treatment!
Another example, my own, should suffice for now. I have referred to this already in Blog 4. Previously, I mentioned that I take responsibility for putting off discovering whether I had an stomach ulcer, Helicobacter pylori, gastric reflux, or some other such condition, or even worse. “Worse” it has turned out to be, and I am unclear how things might have been totally different, though in my vision of the New NHS, I would be certain!
My Medical colleagues at Bradford Royal Infirmary (BRI) were a constant source of information, opinions and inspiration to me as well as unknowing mentors and teachers. I learnt most of the clinical applicationof my work on Na-K pumps in erythrocytes in chronic renal failure anaemiaand other conditions, from Dr Liakat Parapia, Consultant Haematologist and my Co-Director of the joint BRI – Bradford University Haematology Research Unit (HRU).
My dear old friend Dr David Margerrison, Histopathologist, an inveterate smoker, and conjuror extraordinaire, could balance the ash from a whole cigarette on his Capstan Full Strength tip precariously over a cadaver whilst carrying out a post mortem – no drips,no probs! He mentioned one day that his first (and only) recollection of Lecture 1, Term 1 in Year 1, by the Dean and Head of the Medical School was that common diseases occur commonly. Not rocket science that, how come I didn’t get in to Medical School? This had served him well, he said, and I suspect it still does for both newly trained staff and those at the other end of the spectrum. Why do I mention this?
Well, it would also not be uncommon for medical colleagues to also think I’ll sort out the possibility of ‘this’ (condition) my patient is presenting with through a triage of thinking: what’s most likely going on? What’s next most likely , and so on? I have a suspicion I would, especially in a busy GP practice with 10 minutes per patient to play with. So, if you as a patient have a rare rather than a common illness, that is likely to be diagnosed second, rather than first, then you may indeed be unfortunate! After all, common diseases occur commonly!
Well the rest of my story is history now, but what of the future? In my new model for NHS screening practice, I’d love NHSHC professionals to think,“Uncommon diseases, whilst unlikely to be the explanation for my patient’s symptoms, could be an expensive mistake to misdiagnose in the long term”. I must check early and then reverse the usual pattern of thinking to something like”:-
Current thinking Disease explanation: “Most likely”
Common > Uncommon > Moderately Rare > Rare
New thinking Disease explanation: “Most costly and debilitating long term”
Rare > Moderately Rare > Uncommon > Common
Now in Medicine things are rarely this straight forward or simplistically dichotomous, so the judgement of panels of NHS care professionals, perhaps with the patient together, could consider the case and contribute to highest standards of decision making – but not behind closed doors. And, thus we arrive at the Chamber of Open Decisions.
So is that it? “Short-term gain, for long term pain” – the foundation of our present NHS Screening Policy?
I doubt it; and if it is I’d be surprised, but it may be how some people experience it. I do need more examples of this type of story as well as contradictory or counterfactual ones, to explore whether we really are in such poor shape (pardon the pun!) both bodily and financially!
Now it is vitally important that you do your bit here. I’ll need as many examples of similar things that you have experienced personally (preferable), or that you know about and can be verified. I can’t use hearsay or invented scenarios – sorry, because I’m sure we all could create some of the most dramatic stories possible. I really need to complete my foundations as broadly and deeply as possible – extending our cornerstone (Education) to support the rest of this edifice.
We must say “Nope” to beurocracy and ‘standard’ less good practicewhenever we see it in nour NHS. Only the best is good enough. So once again:-
So now it’s your turn. I’ll still be trying to find a special spot in the web site for your ideas and suggestions, but for now what about using the comments box? Maybe I can award prizes for those selections used to compile a final set of recommendations? What about three prizes per section (18 in all). So, come on help me out!
See you all tomorrow! (It’s actually today now, Saturday)
And specifically, I’ll be re-uniting with Ian Rule, my best friend at Bradford University 1970-1974, visiting all the way from San Diego, California, USA to Ceres, for a long weekend! Bet you didn’t know Ceres, Fife was such a draw, eh? And, we have just returned to Ceres from a visit to St Andrews – specifically we sought out Deans Court where I was Warden for several years before our departure for New Zealand.
Photo Montage of Deans Court where I was Warden from 1997-8 and again from 2002 – 2007, at the University of St Andrews (Founded 1413),