Category Archives: Patient problems

What Fiona Did …. or Didn’t Do

There is one thing about being a patient that I generally battle with more than almost anything else. It’s not the pain, the inconvenience, the boredom or even the lack of dignity. What I find takes real effort … and I suspect this is true for many patients …is in the Staying Cheerful.

Katy Carr managed it. If you never read What Katy Did,  here’s a quick summary. In schmaltzy American 1872 style, Katy began life as an active teenager, fell off a swing, was as miserable as sin for a few weeks until Invalid Cousin Helen arrived and showed her how to deal with what she described as the School of Pain. Katy bucked up, and despite the inconvenience of being paralysed in 1872 (they didn’t even carry her downstairs), she stayed cheerful ….. And learnt lots of helpful lessons about Patience and Making The Best of Things along the way.

Fast forward 144 years. Fiona began last week as an active 46 year old looking forward to a skiing weekend away. She fell off a mountain, tore a knee ligament and was miserable as sin. No Cousin Helen on hand to gently wipe her brow with ‘the sweetest smile’ but she did have Sister Moira to point out the attractiveness of the Mountain Rescue Man, BFF Carol to take her to lunch and buy her weird presents and BFF Sarah to give her wine and take the mick. On top of that she had 5 other wonderful women to jump to attention every time she dropped a crutch,   and a husband and friends waiting at home to carry on the job.

But all that support – which, luckily for me, I’ve had every time I’ve been ill or injured – means you feel a bit ungrateful if then you become a whinging, whiny patient. So you try your best not to be. It’s hard though. Really hard.

Some people don’t try at all of course. They put a miserable status up on Facebook about their third cold this year, and are a little put out if they don’t get at least 10 comments saying ‘Poor you, hope you get better soon’. Others complain vociferously to nurses, doctors, cleaners, anyone who will listen, about their plight and how it is worse than anyone else’s. And when you are low, a little wallowing in the rubbish situation you find yourself in is tempting…. And let’s be honest, we all do it every now and then.

Overall though I think Katy ( and Cousin Helen) got it right.  No-one wants to hang round with a grumpy, bad tempered, miserable-as-sin  patient,  however sorry they feel for them.  It’s blinking difficult being the healthy one too, constantly having to consider someone else, feeling sad at what the patient is missing and watching your tongue. (Remember – no one talk about the brilliant sunny ski-ing in front of Fiona.)

And Staying Cheerful has got to be better for your recovery. Sister Moira, as well as providing useful distraction on the attractiveness of rescuers, occasionally provides a bit of sound therapeutic advice. ‘If crying is going to make you feel better, go ahead and cry your eyes out. But if you keep crying and just feel worse afterwards, then don’t bother. Distract yourself instead.’

Staying Cheerful. Making the Best of Things. Katy probably would have put #countyourblessings on her Twitter feed. And posted very schmaltzy quotes on Facebook. Ultimately though she was happier because of what she did. Probably a good lesson for anyone in the School of Pain.

Boredom in hospital

In case you haven’t realised it yet, your time in hospital will be split as follows.   1% Treatment.   99% Waiting for Treatment.

If you are very seriously ill then the 99% will pass in a blur and it won’t matter.  But for most of us, while being in hospital can be depressing, painful, stressful, and so on,  the worst thing about it is the tedium.  If your ailments don’t get you, then there is a real possibility you could actually end up being bored to death.

You might think ‘Ah well.  I can use the time to do something worthwhile.  Write a book.  Learn how to crochet.  Become fluent in Mandarin.’  Forget it.  You simply don’t have the brainpower because of all the depression, pain and stress in the last paragraph.    Even reading something really simple can just feel like too much effort.

You know you’re in the grips of tediumitis when you start taking an unhealthy interest in the slightest movement in the ward.  When you find yourself putting down Take a Break magazine to watch someone empty the bin,  you need help.

So in the fine tradition of blogging lists,  here is my list of  five ways to keep yourself occupied on the ward without putting too much effort into it.

  1. Listen in to other people’s conversations. It’s unavoidable, so for the only time in your life , completely guilt-free.  Be as nosey as you like.   People have really  in-depth, interesting discussions in hospital, ranging from   ‘What’s wrong with my bowels?’ to whispered ‘ What ARE we going to do with Grandma when she gets out?’   If the curtains are drawn around the bed,  strain your ears as much as you like.  If they are open,  try to show a little discretion. I once had a family of six who were visiting the next bed, actually turn their chairs round so they could hear better what my doctor was saying.
  2. Hospital Bingo. You can make up your own list of phrases to tick off of course but here are a few to start you off. Have you got good veins? (Normally said by a nervous nurse with a needle.) Are my pills ready to take home? (Normally said at 7pm by a patient who was told he could go home at 10am.). Here’s your toast and it’s warm.  (Never comes up).
  3. Read your hospital notes. If they’ll let you. If  you manage to get past the ridiculous hospital procedures about whether you can or not, (another blog post pending), then reading your notes is extremely interesting.  Not only do you find out what you’ve got (which is often difficult to get out of the doctors themselves), you also sometimes find out what they actually think of you in their letters to each other.  I once read one which started ‘Thank you for referring this extremely pleasant lady to me.’ Really?  Of course if you’re a cantankous old moaner then you might not like what you read.  But then you could always write a few complaint letters.  That would use up a bit of time.
  4. Work out who is the most irritating patient on the ward. Points for snoring, whinging, not using their headphones for the TV, telling you over and over again about the intricacies of their illness, being unfortunate enough to be hooked up to a constantly beeping machine ( not their fault but hey), taking an hour in the shower,  having more pillows than you, and generally just staring at you across the ward alot.  Playing the game won’t make them less irritating ..but at least in conducting a scientific study, you can tell your visitors emphatically ‘The most irritating person on here is that woman over there.’
  5. Finally if all those fail, there’s one more thing to try to avoid boredom in hospital. Next time the nurse comes round, try playing dead.  That should liven things up.

Living on a NHS ward

Everyone should be made to live for a week on a NHS ward.  Especially our politicians.  No, not to see how over stretched the staff are. Not to experience how bad the food can be. Not even to see how long you sometimes wait for treatment. But for the simple reason that when you live on a NHS ward you’re forced into close contact with ‘people who are not like you.’

Let’s be honest, we all have our tribes and we all have our prejudices about people who aren’t like us.  For most of us – I hope – it’s not based on colour of skin or sexuality anymore but the prejudices are still there. Perhaps nowadays it’s more about what someone is wearing, the newspaper they read, the television show they watch, the way they vote, the place they live, the school they went to.

And for most of our lives we succeed in spending time with people like us.  Our families often, though not always, have a similar outlook.  We pick our friends.  Our work colleagues, if not from the same tribe, are often from a similar one.  We live our lives most of the time within a common consensus about what is ‘right’.

And then we get ill and we’re forced to live with total strangers, thrown together because of similarities in the ways our bodies have let us down, rather than similarities in education or income.  We eat together, sleep together.   We’re together 24 hours a day, sometimes for weeks on end.

We don’t just share magazines and bathrooms; we share nurses, doctors, healthcare assistants.  We share knowledge about which ones to ask for help, and which ones seem like they couldn’t care less.  We know intimate secrets about each other’s bodies; we hear hushed conversations through thin green curtains, telling us things about our bed neighbours we’d rather not hear.  We notice who has regular, loving visitors ..and who doesn’t.  Even when one of us retreats behind the curtains, desperate for privacy,  we can see the red eyes when they return to view.

I’ll be honest.  I often arrive in a ward in a foul mood.  Depressed and frustrated at being back in hospital, worried about my illness, my husband and kids, I retreat into non-communication with my fellow patients.  No eye contact, monosyllabic answers to those who pry too much, I pull the curtains and lie alone, trying to avoid the reality of what is happening to me.

But after a couple of hours sulking,  I have no choice.  I’m forced to engage with those around me whoever they are, whatever life they lead, however old they are, whatever their faith, whichever newspaper they choose … and life on the ward is generally better when I do.

And it does broaden your view of the world.   We all know in our heads that there are people who are poorer than us or posher than us,  less or better educated, or who vote for parties we might consider unthinkable …but until we actually meet those people, it’s the differences that stand out rather than the similarities.  Living on a ward can make you more tolerant, less sure of exactly what is ‘right’ and ‘wrong’, more appreciative of the difficulties other tribes face.

And that’s got to be a good thing. Hasn’t it?

A visit from St NHS

‘Twas the night before Christmas, when all through the ward,

Not a patient was sleeping, just one who snored,

The charts were hung on the bed end with care,

In the hope a consultant soon would be there,

We shivered cold under thin blankets in bed

While visions of warm toast danced in our head

One overworked nurse and a health care assistant

Ran ragged while machines beeped with relentless persistence,

I lay in bed wondering if sleep would arrive

The night stretched ahead, so hard staying alive

When out in the car park there arose such a clatter

I sprang from my bed to see what was the matter

Away to the window I flew in my gown

Gaping cotton, bare back, with loose ties hanging down

When what to my wondering eyes did appear

But a tinsel-clad ambulance with lights blue and clear

With a little old doctor so lively and quick

I thought for a moment he must be St Nick,

But with a voice full of cheer he did loudly proclaim

‘Santa’s old hat.    St NHS is my name!’

Then with garb crisp and bright as the new fallen snow

His troops from the sky he did call to come low

‘Now Doctors! Now nurses! Now healthcare assistants!

Come cleaners. Come caterers.  Give your commitment!

To the ward! To the ward! Give it your all!’

And with that,  they all flew right through the wall.

And then, in a twinkling, I heard by the stair

A clumping of boots; St NHS was there.

He was dressed all in white from his head to his foot

With a stethoscope hanging down from his hood

A bundle of pills he had flung on his back

A thousand new treatments peeping out of his sack

His eyes – how they twinkled! His dimples how merry

A hundred clear drip tubes tied round his belly

A glistening syringe he held tight in his hand

To pump us with painkillers if we’d so demand

He spoke not a word but went straight to the job

His troops filled the ward, armed with pillow and swab

They tended, they cleaned, the doctors knew all our names

The toast on the trolley was warm when it came

Three pillows appeared at each of our heads

A duvet was laid with care on the bed

In a flash waiting lists were a thing of the past

And the dirt in the washroom was cleaned up at last

Even the ward nutters stopped shouting their ills

And for once everyone in there got the right pills

We all had our own nurse, firm but kind as can be

The TVs were working, the car park was free.

And then with a nod, and a burst of hand gel

He was off with naught but a short farewell

His blue lights flashing and tinsel glistening

Patients asleep, just me still listening

And I heard him exclaim ‘ere he drove out of sight

“Happy Christmas to all, and to all a good night”

 

 

With a little help from Clement Clarke Moore (1779-1863)

 

 

 

 

 

 

 

 

 

Thoughts of mortality at the kitchen sink

I always thought the hardest thing about getting older would be having to confront your own mortality. Turns out I was wrong. It’s confronting the mortality of those around you that causes the dagger to your heart.

You’re forced to confront death in hospital. Sometimes it’s a conversation you overhear about making the woman in the next bed ‘comfortable’. Sometimes you’re still there, in the next bed, when she dies and the nurse suggests ‘You might want to go to the day room for a bit while we sort things out.’

It’s upsetting when these things happen..but strangely it’s mostly because you feel you know her family. You’ve never really spoken to them of course, just the occasional ‘Are you using that chair?’ conversation. But you’ve seen them, every day for three or four weeks, coming in, straightening mums’ bedclothes or changing her nightie, hushed conversations as she sleeps, disappearing from the ward for a half hour and returning with red eyes. They don’t notice you but you know them. And you grieve quietly for them – and her – when she goes.

Somehow the thought of my own death gets easier the more time I spend in hospital and the older I get. In intensive care this year, under sedation for five days, I slipped in and out of consciousness, vaguely aware that I was close to death. I found in that moment that I was quite at peace with the idea. I remember thinking ‘Well 45 years wasn’t as quite long as I’d have liked….but it’s been a really good 45 years. So be it.’

I certainly didn’t rail against it. I was very happy to go gently into that good night. And yet, when confronted with the idea that someone close to me could die, my heart falters, my stomach turns over, my head tries desperately to think of something else. And the terrible thought of how those closest to me would feel if I did die, is enough to have me fighting with every breath to survive.

In my teens and twenties I used to look at ‘old people’ and wonder how they could bear the idea of death. The nothingness that awaits. I used to imagine them screaming inside, violently struggling internally against the inevitable while placidly doing the washing up. Either that, or they’d filled their lives with so many distractions, a hundred to-do lists, that they’d forgotten the brutal truth of what awaited them. But as I stand here, with my hands in the kitchen sink, when I allow my mind to wander away from life’s distractions, I know the real dagger that awaits is in losing those I love, not in losing life itself.

It would be so much easier if we lived a life alone wouldn’t it? Except with no one else to worry about, I suspect we would indeed be obsessed with our own mortality.

Sleep in hospital

Sleep.  The great healer. The time when our bodies recharge and mend themselves.  Without it we quickly feel poorly.  Scientists have linked lack of sleep to, among other things, diabetes, obesity, and even speeding cancer growth.  It is without doubt a great natural cure for our ailments and the reason our doctors, and our mothers, tell us to ‘Get a good night’s sleep.  You’ll feel better in the morning.”

Why then does the NHS put so little value on it?

It’s a recognised fact among us patients that we won’t get much sleep in hospital.  The staff from consultants to porters seem to recognise that too.  The cause is generally put down to other patients, snoring, the crazy ones who shout all night, those who simply weep, loudly.

But as much as other patients do sometimes keep me awake, without doubt, it’s more often the hospital staff and procedures that leave me tossing and turning in frustration at 3am.

Let’s talk about last night.  Lights off about 11pm.  I’d shoved in my headphones to drown out the sound of the two elderly, confused ladies alternately crying for help and ranting at the poor care worker on shift.   Then I’d managed to drop off to sleep.  Until, at 11.58pm,  I heard a voice. “Fiona.  Sorry love but can you wake up?  We need to move you to another ward.  Can you get up and pack please? The porter will be here in a few minutes.”   I travelled down some cold corridors, porter commiserating with me, (“It’s not bloody fair love, they shouldn’t move you at this time”), and probably woke everyone else on the new ward as I clumsily tried to unpack in the dark.  I was not surprisingly then a tad unrelaxed and didn’t manage to get to sleep until about 4.30am.  And of course they woke me at 6.30am to take my blood pressure.

Now if this was a rare occurrence I’d accept it as inevitable in a busy  hospital that has to admit patients through A and E in the middle of the night.  But in some wards, in some trusts, it seems to be an  acceptable, common way of behaving.  The night before last I’d been woken from my slumber by first one patient moving out at 2am and another moving on half an hour later.

And it’s not just the procedures but sometimes the staff themselves. There are those who seem to understand that it is in fact nighttime, who get on with the stuff they have to do but at a lower decibel level than they’d use during the day.  But there are many who carry on as if it’s the middle of the afternoon, switching bright lights on, talking in hearty, loud voices, waking us all up to ask a patient a few questions which could perhaps wait a few hours until morning.

So, NHS, here’s what I propose.  Let’s introduce sleep-protected time zones in the same way we have protected times for meals.  A period between midnight and 7am when everyone talks in whispers, lights are dimmed and no-one should have to move beds.  Of course there will be times when these rules will have to be broken for essential medical care.  Most patients would recognise that.   But if it’s not essential, let’s keep the ward quiet and dark so we can get a few hours uninterrupted kip.   We’re ill for goodness sake.  We need our sleep.

Cost of NHS treatment (or Why you shouldn’t complain about the toast)

There’s a photo of a hospital bill from the U.S. doing the rounds on Twitter this morning.  With the comment ‘The cost of my c-section’,  it details charges like $10,353 for Room and Bed, $7,275 for nursery, $2,270 for pharmacy, $326 for blood storage and processing.   Total bill for giving birth $42,347.  40 thousand dollars.  About 23 thousand pounds.

One of the great virtues of the NHS is that patients don’t need to worry about the cost of their treatment.  But perhaps our complete lack of knowledge on the subject makes us somewhat ungrateful for the amazing service we have.   A junior doctor told me recently he had to wait until the consultant came on the ward before he could write the prescription for a treatment I was having.  I naively thought it was to do with the fact it’s a fairly serious drug ..but no. It was of course the cost that he wasn’t allowed to authorise.  He left my bed and (having nothing better to do) I began to work out just what this particular bout of illness was costing the NHS.

About 3 weeks in intensive care.  At £1500 a day roughly.  About £31,000.  Then another six weeks on a normal ward at £250-£300 a day.  At least another £10,000.  That’s before I start having any investigations or treatment.  Plasma exchange – about 10 or so of them.  No idea what they cost ( and Google isn’t helping me)  but the nurse reckons it’s a few thousand each time, so even being conservative, that’s probably another £20,000 on the bill. Several courses of a pretty expensive drug ( Rituximab) – at least another £10,000.  I’m up to about £70,000 pounds before I even start on blood tests and transfusions, pills and ambulances.  It certainly makes me less inclined to complain about the food.

I wonder though whether the NHS should make more of this.  Maybe we should all be given a fake bill when we leave.  Here’s what it would have cost you.  So instead of us complaining when someone comes to take yet more blood from our arms, we’re grateful  a decision has been made to spend a bit more money on our care.

One of the nurses giving me a plasma exchange was from India. Quite rightly she pointed out  to me that if I lived there, plasma exchange  just wouldn’t be an option, because I simply wouldn’t have the money to pay for it.    And the same is true in so many other parts of the world.  It doesn’t mean we shouldn’t complain when things go wrong in the NHS. And we are of course paying for it in our taxes.  But thinking about the cost of NHS treatment might make us a little more understanding about there not being enough nurses on the ward, why the hospital charges us to park and why the toast is cold by the time it arrives at our bed.

 

Anyone got a funnel? The joy of providing a urine sample

Without wanting to put too fine a point on it, when us ladies have to provide a urine sample, it’s a tad more difficult to do so than for male patients. Put it this way, without a fair bit of limbering up, arm gymnastics and serious danger of an unpleasant splash zone, I have very little chance of hitting that specimen pot.   Luckily someone at some point had the bright idea of a specially shaped cardboard container to help. Made out of cardboard, small and triangular with a helpful handle and a pouring edge to get it into the bottle once you’ve done.    So far so good – except they’re like gold dust.  You can get the great big bedpan type ones, but getting your precious sample from one of them into a small sample jar without a funnel  is like trying to pour a large glass of red wine back into the bottle.  You’re heading for disaster and likely to end up with the urinary equivalent of a red stain on the carpet.   No, it’s the small ones we need but they seem to be in very short supply.   I once had an outpatients nurse look furtively around the department saying “Quick take that before anyone sees.  I’m not supposed to hand them out”.

Anyone know how much they cost? 3p? 4p? Surely not 10p? Tell you what, NHS, I’ll buy one off you.  It’ll save me getting wee on my best jumper.   How about a vending machine, strategically placed next to the loo? Or put them in as a free gift with Take a Break magazine?   Until this changes, women all over the land will continue to use kitchen bowls, saucepans,  flower vases , whatever comes to hand really.  Then we’ll watch silently in horror as our families make gravy in the measuring jug we last used in the bathroom.