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Dignity is fighting a losing battle in the NHS-Cancer Survivorship

The Big Hospital – a resounding TV success?

This programme followed 14 volunteers working in Derby Royal Hospital :

90% of the programme was a wonderful showcase highlighting dedicated NHS staff, passing on knowledge to a receptive and thoughtful group of volunteers. There was much ‘food for thought’, and some ideas that could be taken on board to help address the current staff shortages.

However, one small snippet showed a very undignified side – when a brave Stoma patient was filmed, as a volunteer attempted to change his bag.

We all know those involved with this side of medical care want the public to be more understanding, but one has to question what on earth the hospital’s Press Office, or the CEO, were doing to allow this section to be shown?

Yes, the patient would have been asked and given their consent, but didn’t anyone think about what happens in Society today? He obviously wanted to be helpful, but the hospital should have had more understanding of possible consequences. There are a lot of nasty people out there, and they should have thought about possible consequences.  What might happen on Social Media? What about the patient’s family and friends? Who is going to pick up the pieces if this patient becomes the victim of trolling?

The patient seemed a really nice person, but if you are a Press Officer, unless you keep your eyes permanently closed, you come across some weird and down-right nasty people.  They exist.  It’s a fact of life. But a hospital should know this and try and shield any patient from their actions.

Judging by comments online, not many people follow genuine news, or have taken note of the harm that can be done when one incident or event is ‘trolled’.  Let’s hope it raises awareness of problems around Stoma bags. I hope I am wrong, but sadly in today’s world one can imagine what might happen – and it’s not dignified.

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

I wince every time a nurse asks loudly “what’s your date of birth?” I can get stroppy and answer “over 21” – a small revolution to counter a demeaning question when voiced in a roomful of people with nothing else to interest them.

Then the humiliation of being overweight. A Macmillan online posting had 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 commenters agreed.

Those of an older generation often dislike being addressed by their first name.  In private hospitals you are always asked “how would you like to be addressed?” Yet when my Mother was in an NHS hospital, Sister asked why hadn’t I told her Mother was deaf?

She wasn’t deaf – just refused to answer when staff used her first name. But we can only take so much, and then we feel the loss of dignity.

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 penicillin, 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 my muscles 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 his pride and joy, so he passed my care over to the youngest doctor on his team, J.I.P. James.

Mr. James and I got on like a house on fire, I knew instinctively what would work for me, would suggest it to him, and we worked together to get me out of Stanmore, Nurses said they could always tell my bed as it had an arm or a leg waving.

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.  Google him. He was an inspiration.

During weekly ward rounds I would question Mr. James about my treatment; then ask if such-and-such might work.  Sister was 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 around it on dry land.

Obviously Mr. James was 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 my treatment, have an opinion, and talk it over with the boss, to my 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 of my horrendous blood blisters that sprouted 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.

A friend working there told me to go to France, where I received the correct treatment and lots of TLC.  And, after numerous tests, the French confirmed my problem was a reaction to Tamoxifen.  I returned to London, only to be treated like a whistle-blower and told “you aren’t supportive of the hospital” !!!!

You have the right to be treated with Dignity

– just make sure staff understand what this means

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 or isn’t right for YOU.  

Today, those treating you can follow a pattern that’s right for the majority.  But you have the right to ask them to STOP immediately if you are unhappy; especially if what is being done feels undignified. 

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