Bring back curiosity 

Today, ask any NHS staff member a question and often up pop the shutters, or some other delaying tactic.  As I was told at The Marsden, “you are ONLY a patient”.  Doctors reach for prescription pads, as there is no time allocated for ‘old-fashioned’ curiosity, nor to answer questions, and no time to discuss alternatives.

What has happened to the old-fashioned spirit of curiosity amongst doctors?

Gone are the days when young doctors acted like tenacious terriers if something “wasn’t quite right”, asking you question after question whilst they probed for possible causes.  When I was treated for Polio in the ’50s, the whole team around me were open to suggestions, and spent hours discussing with ME what might work.

When was the last time you had a discussion with the MDT supposedly looking after you?  They are locked away behind the scenes, and I am often left thinking they must have been discussing somebody completely different, when the treatment proposed just doesn’t seem to make sense.  Last year, whilst a patient at Chelsea and Westminster hospital, I thought I had cystitis and the doctors treated me for this – only to discover when I was moved to a private hospital that I had picked up Staphyloccus Coagulas negative – a very nasty hospital infection. No-one came near me to ask questions.  They just took the word of a Health Care Assistant (HCA) allocated as my nurse.

At this hospital,  questioning a drug prescribed, I asked ‘my’ HCA why I was given this?  I knew it was a definite NO-NO as It was for Alendronic Acid, which can only be given if you can sit upright for 30 mins after taking.  Having fractured six bones I was flat on my back, unable to sit up, but the nurse’s  acceptance of the junior doctor’s prescription, without even listening to my concerns, was frightening.  Luckily I refused it, but they were not happy!

Bring back Matron

In the ‘old days’, Matron would have got to hear of this, and made absolutely certain that everyone involved knew why there had been queries.  Today. no-one seems to care.  A massive cat seems to have killed all attempts at curiosity, and all that happens is shrugged shoulders.

This is probably why we often get useless treatment for long term side effects of cancer drugs.  The NHS’s knowledge of symptoms, let alone how to deal with them, is abysmal.  Contrast this with the interest I always find when I am treated in Europe;  where Consultants, doctors and nurses always seem keen to know how I am being treated, and with what.  Then spend time discussing possible options.  Tell them about something that is working for me – and they always want to know more.

Sadly, if I wish for time to discuss possible options, I often have to pay and consult my doctors privately;  this is often the only way to have adequate time for discussion. 

Treatment of skin lesions

One nasty side effect from Tamoxifen were skin lesions;  described by my doctor at The Marsden as “due to your age”.  The Chaplain helped me go to France, where the centre at La Roche Posay had researched and found these lesions were definitely a side effect of Tamoxifen.

So I was curious why, when I come back from France,  samples and clinical trials reports that the French Cancer centre had given me were dumped in the Chief Nurse’s w.p.b.  No-one seemed the slightest bit interested in learning how this centre had cleared up my horrible skin lesions – which had baffled them.  All the ‘evidence’ I had gathered on my successful treatment was ignored, and dismissed.

I since learnt that the treatment  and products I had been prescribed are used in over 90 major cancer centres around the world;  the NHS still tells us skin lesions from Tamoxifen are down to our age!

Curious as to why, when I do my research and come up with info regarding my side effects which I have gleaned from ASCO (American Society Clinical Oncology), MD Anderson (probably world’s foremost cancer hospital), Livestrong and other American cancer charities (much more effective and pro-active than ours) and present it to my doctors, most of them just sit with closed ears?  They don’t seem to want to know what others are doing in reputable hospitals around the world.

This is really sad: where is their spirit of curiosity?  Why don’t they at least look up what I’ve told them, to check if perhaps what I have reported might be worthwhile looking at?

What used to happen

In the 50s I remember how, when I was told that I would never walk again, my young, very curious and receptive Consultant at Stanmore Royal National Orthoapeadic , J.I.P. James would listen to me, when I asked if something would help.  He would think about what I had said, and the next week would come back and say “let’s try it”.  I went on to walk out of the hospital; he went on to be appointed to many top posts; we could do with more like him.  Instead of the ‘tick box’ medics we suffer today.

I am very particular about who treats me medically;  it’s MY life, so I want to ensure I get the best health care possible.  I have 12 long-term conditions, and am being treated under consultants at eight NHS London hospitals and two private ones.  Looking through my list of consultants who treat me, when I moved to another GP practice my new GP looked down the list and said “you do have some top consultants”.

Yes, because I ensure that the best person treats me who understands all my co-morbidities.  They all have the curiosity gene, and will dig and dig until they find what’s wrong.

It’s my life, and I want to live as long as I can.

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