22. Harry Potter and the “Chamber of Secret Decisions”

Harry Potter Chamber Secrets
The Second Harry Potter novel by J K Rowling (2000)

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.

  1. Education – underpinned by philosophy
  2. Screening – underpinned by data
  3. Testing – from birth to death
  4. Preventative treatment – promotion of healthy life styles
  5. Research –on preventative medical conditions
  6. 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.

Lump Sequence

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 (Prof John), 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

 

Banting Best Toronto

Banting and Best at the University of Toronto, Canada, 1921

(Accessed from http://bbdc.org/ 11 December 2015).

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, recall Blog 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 all National 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 application of my work on Na-K pumps in erythrocytes in chronic renal failure anaemia and 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

to

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 practice whenever we see it in nour NHS. Only the best is good enough. So once again:-

Total Defiance

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.

Deans_Court_01

Deans Court Montage

 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),

“Scotland’s first University”

Web site Accessed via http//:st-andrews.ac.uk/ on 12 December 2015.

Long live the NHS, But not as we know it!

But before I go here’s one of my favourite New Music People.  A little bit Rock and Roll, a bit Jazz, a bit Celtic and a bit damned good – Hozier!

Hozier Singing

 

 Accessed from https://www.youtube.com/watch?v=PVjiKRfKpPI on 11 December 2015.

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