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    ‘Don’t Google this’, the doctor told me when I got my daughter’s test results

    5 May 2015

    ‘Don’t Google this’, the doctor ordered.

    The command – with its authoritarian tone; implied threat (if I did, I’d find out something sinister); distrust in my ability to sift and understand information; suspicion of uncontrollable emotion – would have raised my hackles in any circumstances. As it was, I’d already been shocked by the GP’s telephone speculations and could not reply.

    The casual, unthinking cruelty of medical professionals is something I’d encountered before, in caring for my elderly parents. The media regularly uncover evidence of nurses chatting while their patients plead for help and hospital administrators pushing out the ‘bed-blocking’ elderly and infirm.

    But this time it hit me really hard. Because the doctor was talking about my daughter.

    Just before Easter we decided to test Izzy, 11, for anaemia: she was looking pale and thin and was complaining about being tired. The condition ran in my husband’s family.

    A GP at our local NHS surgery saw her and ordered a blood test. A week later my mobile phone rang in the office: ‘Hello is this the mother of Isabel Lucas? This is Dr X.’

    The male voice slipped into the automatic mode of someone who is reading from a text: ‘You came into our surgery with your daughter Isabel on April 3. You wanted her to undergo a blood test to determine whether she was anaemic.

    ‘You were sent to Chelsea and Westminster Hospital where they took her blood on April 4. The blood test measured other indicators as well. I have now received the blood test result.

    ‘Your daughter is not anaemic. Her Vitamin D level is fine. Her neutrophil count is normal. Her ESR and CRP are low. Her kidney and thyroid functions are normal.’ Yes, yes, come to the point!

    ‘There is however a spike in one of the liver enzymes.’ He paused. ‘Are you following me?’ ‘Yes’, I mumbled, suddenly fearful.

    ‘We measured for two liver enzymes, AST and ALT. Her AST is slightly raised – but the ALT enzyme is unusually high – 285. Normally this enzyme measures at 40. In one so young this is serious.’

    ‘Oh.’ I felt as if the GP had punched me. My legs started trembling. My silence prompted the invisible doctor to ask again, gruffly: ‘Mrs, er, Lucas, you follow? You understand what I am saying?’

    He sounded impatient rather than concerned. as I say, I’d come across such callous treatment at the hands of the hospital nurses looking after my elderly mother and father; this was the first time I’d found it in a doctor.

    ‘Ye-es’, I stammered.

    ‘We recommend you see a liver specialist immediately. We will make an appointment for you at the hospital. We’ll notify you…’

    ‘What can cause this?’ I interrupted him.

    ‘Well, Mrs Lucas, I am not a liver specialist.’

    ‘Could it be’, my voice broke, ‘cancer?’

    ‘There can be all sorts of causes.’ Again, the voice betrayed no emotion. He refused to engage with me.

    My mind seized on the fact that he was not denying the possibility of the dread disease. I suddenly saw before me my beloved Izzy, ghostly white, battling the tumours that had grown in her liver.

    ‘Don’t Google this.’

    My heart was pounding hard. The doctor was refusing to reassure me. And when he said not to Google the symptoms, surely that meant he was worried about what I’d discover.

    I got off the phone and immediately painful memories filled me. I’d seen my father and stepmother take their son Lorenzo for a routine check-up at the doctor’s – only to find that he was not losing his hearing, as they’d feared, but losing all his faculties because of a neurological disorder, Adrenoleukodystrophy.

    More recently, one of my oldest friends had had her little daughter Blossom, Izzy’s great chum, tested because of a chronic stomach ache: again, the diagnosis had been merciless – neuroplastoma.

    The doctor on the telephone had not actually examined Izzy. Although he hadn’t diagnosed anything, it felt to me that he was (at least in spirit) breaking a cardinal rule of medical training: diagnose the patient, not the test. He also had no idea that Izzy was the only child of an anxious older mother whose life revolved around her little girl.

    He could have easily calmed my anxiety by saying that many minor ailments can cause irregularities in liver tests and that even the rare exceptions to this are usually easily treatable. He could have said that all the other indicators showed that the liver was functioning normally and that there was nothing directly pointing to a life-threatening or serious condition. All of which happened to be true.

    Yet here he was, soaking up my fears and issuing bans.

    I rang my husband. He could hardly make out my words – but he did hear the key term, ALT. I repeated the doctor’s orders: do not Google this condition. Thankfully, Edward ignored him (and also telephoned a relative who is an experienced GP) and by the time we met outside my office he could reassure me that a virus or a reaction to an antibiotic were far, far more likely causes of a spike in our child’s ALT than some cancerous growth. I couldn’t be sure, of course, but my husband’s explanation restored my sanity.

    Days later, when a second blood test showed that Izzy’s ALT had decreased, and a second (private) doctor explained that the first result was almost certainly caused by a transient virus, I allowed relief to flood me.

    Anger swiftly followed. Why did that doctor needly turn that phone call into a nightmare? And how dare he prevent me from researching the test findings?

    I shared my experience with friends. Everyone seemed to have a similar tale: one had been diagnosed with cancer just before Christmas – and warned not to Google his condition – only to be told after a very miserable holiday that he actually had an ulcer.

    Another friend, a gay man, had been told by his GP over the phone, that he should take an Aids test because his virus was ‘consistent with HIV – though let me check with a colleague’. Later the GP rang back and said, casually: ‘Apparently the blood test just means you have one of any numbers of viruses. Best to take the test anyway.’

    My friend rushed to St Mary’s Paddington, where a specialist told him: ‘There are thousands of viruses out there and based on these tests and your lifestyle I’d be very surprised if it was HIV. No harm in taking the test, but there’s no hurry – you can take it when you’ve recovered from this virus.’

    Sure enough, it wasn’t HIV; more like an extremely nasty flu. My friend never found out precisely what it was, because that would have required extensive testing, and   within weeks it had gone completely.

    Another horror story, though not involving a doctor: a woman friend had been telephoned by a surgery receptionist, chasing her after her mammogram results suggested breast cancer. Half way through the conversation, my friend, by now thoroughly agitated, discovered they were discussing another patient’s mammogram.

    Doctors can spot symptoms of a disease before ordinary mortals can; diagnose the causes of many ailments; heal us. Or not. Medical conditions that scare the wits out of patients become part of their routine – and this is true of nurses and even receptionists.

    That’s understandable – but routine can all too easily turn callousness when they break bad or worrying news over the phone with all the sensitivity of a speaking clock. The NHS must do something about this torture-by-telephone, which is happening more and more often.

    Izzy, by the way, is doing just fine.