At last November's BMMS Science Day Chris Smith spoke brilliantly about her work putting together the hugely popular Travel at High Altitude booklet and led to us hearing about her experiences of being a subject on countless medical research expeditions. With this in mind we asked her to take a look at the coronavirus pandemic from a different perspective. Here's what she wrote...
"Picture the scene…
Yesterday I took ‘A’ to hospital - they said he’s got Covid-19. He’s now in an ‘Isolation ward’. I’m ‘Isolating’ alone at home.
I imagine the hospital - rows of sick people, machines, zombies in white suits and masked faces. The TV, papers and internet stories scare me. Is my ‘A’ dying a horrible death alone?
Questions swirl around my head; who, what, when, where, how, why?
I am sick too - with worry.
“Please phone for an update”…
Nervously I dial the number …
You answer. You have ‘A’s’ notes clearly written. You realise Covid-19 wards are ’normal’ to you, but alien to me. Your ‘Plain English’ crib sheet has worked well before. You know taking time now should save time later.
“Hello…my name is…”
How will you come across?
It’s our chance to talk about ‘A’. Will I ‘hear’ what you say?
I have no sensory clues to help my understanding.
Your confidence and ‘control’ will make a lasting impression. I need your full, un-distracted attention and minimal background noise. Please talk slowly and clearly - into the phone - so I can hear what you say. Tell me I can have time to take in what you have said, silence is fine, you want to help me understand and I can ask as many questions as I need. Listen to what I say without interrupting. Be honest, be realistic and positive (where possible).
We need to get to ‘know’ each other. What’s my preferred name and who I am (if you call me Christine and ‘A’ by his ‘proper name’ I am already uncomfortable). Tell me your name and what you do for ‘A’ (not your job title).
What language will you use?
I heard about ventilators? What do they do? Pneumonia? What’s that? Covid-19 is a killer cold isn’t it?!
Use my language, not ‘hospital’ language;
- avoid long sentences (< 30 words), big words (< 4 syllables), jargon and acronyms.
- if you use medical terms, follow with a ‘Plain English’ explanation.
- use words an 11 year old would understand (or non-medical friends on a night out).
- keep it short and simple. You can add more information if I ask for it.
How am I doing?
Keep checking that I understand. Pause to give me time to process the information and chance to ask questions or clarify things. My silence is thinking time. If I don’t understand, try different words.
Beware questions with yes / no answers - am I saying ‘yes’ or ‘no’ as the ‘easy’ option - because I can’t hear, didn’t understand, I know you’re too busy…?
I am tired, stressed and emotional. I need your care too. Can you help me understand my feelings? Knowing my ‘grief’ symptoms are normal could be reassuring. Can I call again if I need to?
“Thank you for doing everything you can for ‘A’ and taking time to explain things clearly”
Digital flashcards are a new way to communicate clearly with patients. These can be freely downloaded here.
Are you repeating the same things call after call, a ‘Plain English’ crib sheet may help, i.e.
ICU (Intensive Care Unit) / ITU (Intensive Treatment Unit) / (CCU) Critical Care Units - the place where very ill people are looked after in hospital. People will be attached to machines to help keep them alive - some work the heart, lungs or kidneys.
Covid-19 - an infection caused by a virus which spreads easily. You catch it from people when they cough or touch things with dirty hands. It is new in humans, so we don’t have any medicines or vaccines to stop it.
Virus - a tiny (microscopic) parasite (nasty bug / germ) – it can only stay alive if it is inside another living thing. A tiny number of viruses cause illness in humans.
Pneumonia - happens when lungs become infected. The inside swells and the air sacs fill up with liquid. This makes breathing hard. The lungs start to cave in. The body can’t get enough oxygen.
Ventilator - a machine that helps people who can’t breathe. It pushes air into the lungs. It helps to stop the lungs collapsing.
Intubated - the air from the ventilator goes though a tube in to the windpipe through the mouth (or nose). Sometimes the tube is fitted to a hole made in the neck.
CPAP (Continuous positive airway pressure) - a special mask which fits tightly over their mouth and nose. Air from a ventilator is breathed in through the mask.
Sedation - a drug is given to a person to make them feel sleepy, calm or so they can’t feel pain. When they are very ill it makes them totally unconscious / ‘knocked out’.
AND FROM ME ON THE OTHER SIDE - THANK YOU EVERYONE FOR WHAT YOU ARE DOING. If there is anything I can do to help – please ask. Chris Smith."
Future events will be advertised here first!