Painting By Numbers
There is an African proverb that translated means something like
‘Ask one who has experience rather than an expert.’
The kitchen has a new, matt, black toaster, a four-slice, cool-wall, pop-up version, with chrome finishes. Which is interesting only because I asked more questions when buying that toaster than I did when accepting a prescription for our son.
I know what we needed a toaster for, what I wanted it to do, how I was going to use it. Whether it should be a two-slice or four-slice, take thick and thin, have a defrost button, cool wall, crumb tray or lift-up option. I knew which bread, from white to multigrain or malted, we prefer, and how long a slice takes to brown to our taste.
Most of all, I knew the toaster would only toast.
We ask questions and we spend time reading labels in supermarkets. We’ve taken control of our shopping.
So why not medication?
When Ben was first put on his conventional regime, I noticed, for all the doctors threw down him, Ben was not getting better. I did everything I had been told. I understood and I didn’t miss a thing.
Except I had not realised we were the ones with the experience.
I was the one who was living with Ben and Harry, who knew what was going on in their lives, what their environment was like, their personalities and characters and moods. I knew their past, their capabilities, their hopes, beliefs and their real and unfounded fears.
I had the experiences that put things in a context.
I had a choice: to trust others because they had the knowledge, or wise up because I understood our sons.
If we examine the environment of the medical system we are then able to be more constructive in our thinking. Learn all you can and then make sense of it for yourself. It is a more productive way to make decisions than a simplistic self-help idea of recognition and positive thinking, acceptance without understanding. The experts agree that any effective treatment only works because it treats a person in a way that matters to them. Most of the time you will be treated by a physician who is taught to be a straightforward mechanic. As Bernie Siegel says, ‘In medical school we learn all about disease, but we learn nothing about what the disease means to the person who has it.’
In their book Trust Me, (I’m a Doctor): A Consumer’s Guide to How The System Works, Dr Phil Hammond and Michael Mosley point out: ‘Doctors cannot keep track of every disease whereas you, as the patient, with relatively few diseases, can easily learn as much if not more than your doctor.’3
So I piled the books up and began to read.
There were atlases of the body, with chapters on the ear, nose, throat and chest. I pored over gross pictures of growths in dermatology guides and overly intimate illustrations from anatomy books. I learnt about the HPA axis – the hypothalamus, pituitary and adrenal glands – and the thyroid and primary lymphoid organs, lymph nodes, and the Mucosal Associated Lymphoid Tissue.
I read papers which seemed more like traffic reports, about the Eustachian tube, airways, congestion and pollution.
I learnt about the circulatory, respiratory, musculo-skeletal, endocrine, hormone, digestive and neuro-systems. Then I began on the immune system.
B-cells, T-cells, Cytotoxic Th helpers and Self cells. Proteins, peptides, lymphokines or cytokines IL4, 5, 6, 10 and 13. Stimulated B cells lead to IgA and IgE which make histamine and mucosal defence.
Lymphocytes and leukotrines, antigens, pathogens, antibodies or immunoglobins IgEs, Gs, Ds, As, amino acids, MHC molecules in classes I and II, macrophages and ligunds.
I read myself into a stupor about coughs, colds, hayfever, eczema, asthma and, of course, allergic rhinitis.
I read all about allergies: what are allergies? who gets allergies? The symptoms of allergies, diagnosis of allergies, how allergies are treated.
I learnt about tests: skin prick tests, patch tests, radio allergo sorbent tests and immunoelectrophoresis-serum tests.
I learnt statistics. One in three people in the UK will develop an allergy at some time. If you have one parent who suffers from allergies, the chance of you being the one in three is a further one in three. If both parents are affected, the chance is increased to two in three. Four out of ten school children have at least one allergy. One child in five has asthma. Over one million people have a food allergy. An estimated six million people have eczema. Over nine million people have hayfever.4
A staggering 30 million of us live with one or more of The Big Three: asthma, eczema, or allergies. One in three people in the UK suffer from a chronic (meaning long-term or frequently recurring) illness or disability.5 One hundred and fifty thousand asthma attacks a year are severe enough to be admitted to hospital in the UK every year and more than 1,600 people die. There were 35 million prescriptions for inhalers in 1996–7, at a cost of £400 million to the NHS.6
After all the anatomical explanations, diagnosis methods and numbers, do you know what I started to pick up?
One word started to bother me.
They know all about the physiology, immunology and endocrinology of the whole issue, and the bottom line – the last amazing thing they can do for you – they can tell you how to manage allergic rhinitis.
After all that, we can do no better than just live with it.
As a kid, I loved to watch a comic troop of guinea fowl blustering through the tall dry grass to nowhere in particular. African folk tales always cast this plump, scurrying chicken as the most ridiculous bird and the butt of everyone’s trickery. They are like polkadot balloons that burst into flurries of panic even at the sight of their own shadows. Mystified by their own actions, their reaper-black eyes blink blankly in their vivid scarlet and electric blue, bony casque heads. Like a town council meeting, they squawk indignantly all day about how ‘it shouldn’t be allowed’.
Knowing they were called guinea fowl did not make either them or me any smarter. They were still dinner.
Cataloguing, categorising and collating are strangely human activities; no other species keeps journals or index lists. Knowing what something is called is nowhere near to understanding it for what it is or being able to deal with it.
Information is not insight.
Analysis also creates a distance, a lack of engagement, like spitting into a glass. We swallow several hundred times a day but if you spit into a glass and examine your saliva are you then going to be able to drink it? You could find out what its chemical make-up is and be able to make an accurate, detailed, objective record of it, but this won’t help you swallow it again. And yet we do all the time.
Doctors have learnt to classify rhinitis into categories: seasonal, perennial, perennial nonallergic and vasomotor rhinopathy.
They can discuss the disease processes – from the inhalation of the antigen to the discomforting signs and symptoms. Sneezing, both blocked and runny nose, itching of the nose, mouth, eyes, skin, impaired smell, sore throat, headache, loss of concentration, chronic cough, wheezing, and so on.
They can identify precipitating factors: irritants, inhalants, household allergens (dust, dust mite, feather, animal dander), outdoor allergens (pollution, mould spores or tree, grass and weed pollens).
They can summarise the natural history of allergic rhinitis and list the complications – sinusitis, orthodontic problems, otitis media (middle ear infection), the list goes on.
Doctors can describe different ‘treatment modalities’ (ways to treat) such as environmental controls (lots of lovely housework and special bedding), inhaled and systemic steroids, decongestants and antihistamines – with various different classes each of them.
They can talk the talk of topical applications, speak of cromolyn sodium and, in addition, tell you of its use in patients with ‘concomitant’ asthma. They can discuss everything from indications for immunotherapy down to allergic/non-allergic conjunctivitis at great length. They can even give you their view of the impact of allergic rhinitis on the quality of your life.
But, whatever paper or guide or advice I listened to, they all ended the same, with a system or process of managing the condition, to manage the impact on the life of our child.
There’s that word again: manage.
I looked up the word.
‘Ma’nag/e v.t. & i. Handle, wield control, regulate (with can or be able to) cope with’ – Oxford English Dictionary.
But coping is not a solution, let alone a cure.
Imagine what it’s like to know all that we know and it still amounts to nothing more than a management programme.
Then they mention, almost in passing, ‘judicious use’.
‘Don’t over-use the medications; they become less effective the more you use them.’
‘But my child needs them, you said that’s what you have for him.’
‘Use your judgment and don’t over-use them.’
‘So, the more serious an attack becomes, the more I’ll have to use the treatments, and the less effective they will become. This will make the symptoms less manageable and therefore they will get worse?’
‘You also have to bear in mind the comparative acceptability of the side effects over the damage the condition is doing to the child.’
‘His name is Ben . . . Sorry, what’s that about side effects again?’
‘As with everything, nothing to worry about. Not everybody suffers all of them at any one time. There is a list in the small print at the end of the leaflet included in the packet, if you are interested . . . Oh, don’t let it worry you; most reactions are mild, if they occur at all.’
Have you ever read the possible side effects just on a bottle of decongestant from a high street chemist? Feeling sleepy or unable to think clearly, dry mouth, burning, stinging, redness or itching. Headaches, runny nose, appetite stimulation, weight gain, hormonal disruption, growth retardation, not advised for patients with epilepsy – the list goes on.
And somewhere in there is something known as benign prostatic hypertrophy. Which I am fairly sure is not a prize you can put on a shelf along with your school swimming cup.
Progress has been swift and, at times, great. Our grandparents grew up in an age without antibiotics, open-heart surgery, organ transplantation, pacemakers, kidney dialysis, hip replacements, keyhole surgery, MRI or ultrasound scanning. The range of treatments, diagnostic techniques and methods of preventing disease that we now take for granted was simply unknown.
This is progress, but the age old question ‘Do we really do this with full knowledge, wisely and judiciously?’ needs asking.
There are a growing number of Multiple Drug Resistant (MDR) diseases. The miracle of antibiotics has been abused, making them less effective. Vaccines are an imperfect art and there has not yet been one successfully manufactured for a parasite – for example the malaria parasite, which kills 1.5 million people a year. Viruses don’t respond to conventional medication, there is no cure for chronic degenerative diseases and most forms of allergy or auto-immune disease, and no effective management of most kinds of mental or psychosomatic illness.7 The list grows of drugs which don’t work or cause equal problems to the disease. There is a growing concern about how many conflicting medications are building up in our bodies, needing more medication to treat the effects they cause.
Do we understand what exactly it is that doctors, the system and the drugs can actually offer? Food labelling is now rampant; not just content, calories and chemicals, but how it is produced and who produces it and whether they are paid fairly or not. Shouldn’t we be asking more questions about the drugs we dose ourselves with than what we wear, eat or plug into our kitchens?
In amongst all the reading I did I found one particular statistic interesting: despite there being more than 170 published clinical trials, there is no consensus on the best drug for the initial therapy for middle ear infection or acute otitis media (AOM).8 Which is what Ben had, and thousands of our children have, all over the country, and will continue to do so. This made me realise I didn’t know that much about the drugs being prescribed or why they were prescribed or what the chances were of them working.
Acute otitis media (AOM) is one of the most common reasons children end up at their GPs. Most children experience at least one ear infection by the time they are seven years old. AOM is one of the most common reasons for prescribing antibiotics. Ben had been prescribed antibiotics and we believed they had cleared out the infection. But research has proved it takes seven children with AOM to be treated with antibiotics for it to work for one kid. Six of every seven children with middle ear infection either do not need antibiotics as their first type of control or will not respond to antibiotic therapy.9 This is the figure officially known as the NNT, or Numbers Needed to Treat. There is no way of knowing which one it will work for, just that your child has a one in seven chance of antibiotics curing their earache. Our chances of benefiting from any treatment is often well below 50 per cent – now they don’t tell you that at the surgery door.
NNTs are of course relative figures; it is not always true that a high NNT is terrible, because it depends on context. An NNT of seven in a fatal condition could be good odds – one person in seven could be saved, but it is a handy piece of information and is all too often deliberately excluded. Of 359 articles published between 1989 and 1998 in five major journals, all included a relative measure of how the drug reduces health risks, say Jim Nuovo and Joy Melnikow at the University of California, Davis. But only eight reported the more significant figure of how many people a doctor would need to treat before one of those patients sees the benefit.10
French physiologist Claude Bernard (1813–78) also pointed out a statistical ratio ‘means literally nothing scientifically and gives us no certainty in performing the next operation’. His point is that there is no way to determine if the next person to be operated on, or treated, falls into the statistically advantaged group or not. There is no way to know if you are the one in seven, or ten, or one-hundred-and-eleven who will benefit from any procedure.
Despite a huge amount of data that proves women assimilate, process and respond to drugs differently from men, most drugs are tested on fit young men who, I am sure, pretty-up the place for the nurses who carry out the trials, but make a mockery of every trial for painkillers used in labour that have never been tested on women.
Every time I learnt something, got through a step or a stage, another one revealed itself, in an endless pursuit of a solution. The more I chased down the details, the more elusive it became. It becomes a game of reductionism, and in an attempt to define absolutely what it is you are dealing with, you find every account of allergies, eczema, asthma and their management excludes or omits others.
Until the result of knowing so much is not to have a more complete or accurate picture, but to see the gaps highlighted. Like painting-by-numbers with the red pot missing, at the end, when you hang it on the wall, the unpainted parts stand out.
Just knowing that the antibiotic we gave Ben only had a one in seven chance of being the right antibiotic for him, brought into relief how much we trust the drugs. You could put up with a GP having an off day, if you were sure you could get out of the system what you needed – a prescription you could have faith in. The last blanket of security is always that the drugs can be relied upon.
And yet, Lynne McTaggart, in her book What Doctors Don’t Tell You, points out that ‘after many years of wracking my brain, trawling through the information on thousands of drugs on the market, I cannot think of a single category of drug besides antibiotics that will do anything more than what drug companies call “maintenance”’.11. Certainly drugs developed to treat chronic diseases, such as asthma, eczema, allergies and arthritis, at best do no more than alleviate symptoms and usually prove to contribute to making many people worse off than they were before.
It seems that trying to match every patient’s needs, regardless of their creed, colour, age or gender, with a limited range of inflexible solutions is an exercise in gambling. Any success is at best random and unpredictable. At its worst we should remember that gambling is not a low-risk investment. The odds are always against winning.