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I don’t make the rules – but NHS should treat us with Dignity-Cancer Survivorship

Rude and Personal Comments from doctors and nurses unacceptable

They should know better

Everywhere you go in hospitals, notices announce that staff will treat patients with “Dignity”.

Yet a Macmillan online posting today has numerous comments about a patient being weighed in a crowded waiting room, then the nurse talking loudly about the results.  This is appalling, and all the comments agree.

One’s weight, along with medical information, should be a secret – and I am afraid if this happened to me I would be tempted to slap the nurse’s face – or worse.

Dignity has gone AWOL

If you query an unhelpful treatment plan, doctors shrug their shoulders and say they don’t make the rules. This makes me feel like screaming.  What’s to stop them changing rules then?  But it’s all part of today’s culture that thinks more of  ‘Team Players’ than the old-fashioned doctor or nurse, prepared to fight on  behalf of a patient for more appropriate care,..

  • Why won’t rules allow staff to change treatment if something might work better?  In the light of recent scandals, shouldn’t staff be challenging things on our behalf? 
  • Why aren’t patients supported to challenge something that doesn’t work?
  • Medical history is full of examples when medics had the guts to challenge the current thinking   Without things ‘going wrong’ we would never have had penincillin, etc. 
  • What if what we suggest might be cheaper for the NHS?  The NHS doesn’t  care  Ask why?  A shrug of the shoulders and you are told by the arrogant person that they don’t make the rules

So what…..

What DO they make? The tea? This takes us to the very heart of culture in the NHS;

  • handed down policies that don’t work
  • no-one challenges flawed thinking  (look at the hospital scandals)
  • giving us organisations that don’t work.

It happened to me

I was a polio patient in the RNOH Stanmore many years ago.  Told that I would never walk again, I wasn’t staying in such an environment for the rest of my life. I made plans for an exit strategy,  convinced recovery would depend on exercising every waking moment, even though medical thinking at that time advocated complete bed rest.

I was aided by the fact I was not popular with the Professor in charge.  When he told me I wouldn’t walk again, I said I wasn’t going to stay in that place for the rest of my life.  ‘That place’ was the hospital that was his pride and joy, so he passed my care over to the youngest doctor on his team, J.I.P. James.  He and I got on like a house on fire, I knew myself what would work for me, would suggest it to him, or sometimes even do it if it were too radical – and we worked together to get me out of Stanmore,  He went on to reach the top of his tree, became a professor, president of his discipline and was instrumental in training many doctors who went back to their country and eventually became head of their health services.  .

Nurses said they could always tell my bed as it had an arm or a leg waving.  .

I would question Mr. James about my treatment during weekly ward rounds; then ask if such-and-such might work.  Sister and her cohorts were horrified, but he listened, and usually let me do what I wanted.  Until the day, left alone to swim around in the pool, I was discovered walking on dry land.

Mr. James was obviously told what I had done, and during the next Ward round he suddenly said “let’s see you walk”.  And from that moment on I was allowed to break with tradition, do what I knew was best for me, and eventually walked out of Stanmore.

What a change today

At Stanmore I was able to discuss policy, have an opinion, and talk it over with the boss, to everyone’s benefit.  So when cancer hit I just went for what I knew would be best for me – and expected Oncologists to listen   It was a struggle, and when I was proven right, no-one would acknowledge this.  I often got the cold shoulder, and was made to feel I had ‘let the side down’.

When told my horrendous blood blisters that came up three days after I started on Tamoxifen, the head Dermatologist informed me this due to my age. I only wish I had reported him to hospital authorities, because he told me this whilst I was stripped stark naked, in front of his students.  But I was too polite to treat him as he had treated me.

That hospital had a horrid culture;  a friend sent me off to France where I received the correct treatment and lots of TLC.  And, after numerous tests, it was confirmed that my problems was a reaction to Tamoxifen.  I returned, only to be treated like a whistle-blower and told “you aren’t supportive of the hospital” !!!!

Changing culture is a huge job;  managers create their own eco-structure and their own climate. It’s your job to speak up and speak out if you genuinely feel something is/isn’t right for YOU.  It’s well worth contacting The Patients’ Association. 

Today, very often those treating you are scared to think outside the box.  Just make sure what you are doing is really working for you and STOP immediately if something goes wrong,

Good Luck!

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