Tag Archives: patient

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.

When an NHS relationship ends

Oh how sad it is when a relationship ends.  The pain of losing that one person who understands you more than anyone else.     No more chats as you lie in bed.  No-one around who you really trust as much as you trusted him.   Having to start a new relationship with someone else who might not prove to be as reliable, or thoughtful .

I have lost my consultant.   And I am grieving.

It sounds daft doesn’t it?  But for us NHS patients, having a long term  relationship with a doctor who we really trust makes a  difference.   I met my consultant  11 years ago.  I’d spent 2 or 3 years being passed around the NHS, short term dates with doctors who knew very little about my immune system problem and often couldn’t even remember my name.   I remember hearing his voice for the first time outside my  room, telling a cluster of junior doctors about my condition.   ‘This might actually be someone who can help’, I thought.

And he did.  I’d been warned to have no more children, but he said I could.   I’d been told there was nothing that could be done to stop the damage to my kidneys, but he said there was.  I’d been left with no hope but he gave me bundles of it.

Over the past decade, he has fought to get me the best,  and often very expensive,  treatment.  He has rushed me into hospital on a few occasions, insisted I got a bed on the right ward.   He’s overridden hospital procedure when it’s not in my best interests.   He’s been blunt with me about the future when I’ve been scared about new therapies. He’s given me his mobile for whenever  I needed to talk directly to him ( I’ve used it twice in 10 years).  He’s been the only person in a long line of medics who asked me how I felt emotionally after being put under sedation for five days in intensive care.  Without doubt he has saved my life on a couple of occasions, and without him my cheeky, lovely 9 year old son would not be here.

And now he’s gone.    And unlike most normal break-ups, I’m given no warning and no reasons.  I turn up to clinic a few times and he’s not there.  I ask and I am told that he’s taking leave, and then it’s extended leave, and then it’s ‘no we don’t think he’s coming back’.

It has to be this way of course.  Anyone is free to move jobs, retire, take a break.    You can’t have patients knowing about a doctor’s personal life.  It’s just not appropriate for anyone in the NHS to tell me why he’s no longer my doctor.  I completely understand and accept that.

But I am bereft.  And worried about him and his sudden departure.  I hope he is well.  I can’t even write him a note to thank him.  To point out to him the immeasurable effect he has had on our family.

Instead, somewhat wearily, I start the search for a new relationship.

Careless Words

I have an amazing friend.  After years of struggling with alcohol, she’s managed through a great deal of pain and endurance, and a little help from AA, to stay off the booze for 4 years.  She pointed this out to her GP recently.  His response? “Good .  Now you need to lose some weight.”

Another friend tells a tale of talking to a doctor about fibroids.  They discussed whether it could affect her fertility.  On finding out she was 35, the doctor said, “Well, what have you been waiting for? You need to get on with it.” She promptly burst into tears.

I can tell a couple of stories too.  The time a midwife gave me an injection just before I was due to have a D and C to remove my miscarried baby.  ‘Injection done.  That’s the worst over with.” Really?  The time a doctor berated me for putting on weight before realising I’d been on a large dose of steroids for six months.  The time a consultant who’d never met me before insisted I was facing the rest of my life on dialysis.  He was wrong.

Everyone can put their foot in it now and then.  I’ve dropped some right clangers in my time.  But I think working with patients requires an extra effort in choosing the words you use.

I have another story of a junior doctor, who came across me in tears after I’d received bad news.  “Fiona,” he said.  “This time will pass.”  He was right, and like the ill chosen words above,  those 4 words he uttered have stuck with me and helped me through the darkest of times.

Dear NHS staff.  Us patients are really vulnerable.  We’re often at one of the most difficult points in our lives.  Our conversations with you are about intensely personal subjects.   We’ve waited for hours for the doctors round on the ward.  Or months for the outpatient appointment.  You are the person who we think can cure us.  Or who we trust to care for us when we can’t care for ourselves.  We hang on your every word and analyse them after you’ve gone.

Careless words might not cost lives, but they can cost peace of mind.   And a loss of confidence in those who are treating us.   But well chosen words can bring hope too.  Remember that when you talk to us , and remember that your words will stay with us long, long after you’ve moved onto the next patient.

 

 

An NHS waiting List

Ok.  I have an NHS waiting list for you.  Oh.  Not that type.  That’s a completely different blog. I haven’t written it yet.  Too busy harassing my consultant’s secretary to find out when I’ll get the treatment I need.

No, I’m referring to that other type of waiting, which is just as prevalent in the NHS but doesn’t get talked about half as much.  The one in outpatients where we sit for hours on uncomfortable plastic chairs, waiting for our name to be called, staring at posters reminding us of all the ailments we may yet succumb to.

It seems to be accepted behaviour within the NHS that patients will have to wait for anything from 45 minutes to 3 hours at outpatient clinics.  A consultant at once said to me, “You know how most people bring a book to clinics?  At this clinic we suggest you bring a tent!”  Ho ho ho.

If a clinic has an average waiting time of over 90 mins, (which mine does), surely there is something wrong with the way it’s set up.   And yet no-one within the NHS seems to take responsibility for it.  Us patients don’t complain of course; we’re too desperate to see our doctors.  And most of us accept that in our stretched-to-bursting NHS, there are too many patients, waiting to see too few medics, getting squeezed into clinics that are full already.

What to do then? The obvious answer is just not to put as many patients in the clinics.  But I want everyone who needs to see their doctor to get an appointment.   And I’ve been squeezed myself into too many clinics that are already full to complain about that.  But I do have an NHS waiting list, designed if not to solve the problem, perhaps to make the process of being ill, a little less painful.

  1. Information is everything. If I know my clinic is overrunning by two hours, and the reason why e.g. my consultant has had to attend an emergency, then I can decide to come later, nip to the supermarket on the way in etc.  My mobile phone number is checked by the receptionist every time I go to clinic.  Why then does no-one ever phone me?
  2. At the very least tell me when I get there. Take a tip from the train companies who have now mostly learnt this lesson. At the moment the only way I can work out how long I’ve got to wait is by eyeing up the pile of medical notes and the people around me.  Massive pile of files and 20 people scrunched up on the flip-down chairs with their legs being tripped over in the corridor equals a long time to wait.  Small pile and just a couple of people not looking too fed up, equals  I might be seen within the hour.   A more scientific means would better so I can choose to go and get a coffee or at least text my lunch meeting to tell them I’m going to be late.
  3. Barring emergencies, insist every clinic, yes every clinic, starts on time. It’s a tad frustrating to fight through rush hour traffic to get in for 0830, only to see your consultant arrive at 0915 and start making coffee for every member of staff there.   First patient is seen at 0930, an hour after they were told to arrive.   I love the fact my consultant is the human type  who would make coffee for everyone,  but frankly his brain is so huge it should be used for curing patients rather than checking who wants milk.   Get someone else to make the coffee.
  4. Treat us as human beings and make it as comfortable as possible for us to wait.  I’m not suggesting sofas and smart TVs but an apology,  updates on our place in the queue and some comfortable chairs for the elderly and infirm wouldn’t go amiss.
  5. So we wait 90 minutes to see the consultant, and then another 30 to get our blood taken. Guess what?  We’ve gone over two hours in the car park.  So not only have we spent all morning sat on plastic chairs with no one telling us how long we’ll be there, but the hospital trust is actually going to charge us an extra couple of quid in parking for the privilege.   There’s an easy solution to stop us muttering as we head to our cars.  Put in the sort of system that shopping centres have where you can get your car park charge reduced by getting it stamped by reception.  Job done.

A final thought.   If we’re not careful, we patients can head down into a spiral of self-pity.  The ‘why me’ thoughts.  Most of the time we try to forget our illnesses, make them fit around our lives rather than fitting our lives around our illness.  But an outpatient appointment is a stark reminder that all is not well and a long wait can lead to thoughts we’d rather not contemplate.  Keeping us cheerful as we squirm on the plastic seats might just help.

 

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 single room in hospital

 

Okay, let me first of all put you straight on a notion that I was once stupid enough to hold.   You might think that being allocated a single room in hospital,  i.e. a room to yourself, is good news.  In most cases, it’s really not.

I remember  being wheeled on a stretcher to my first single room.  ‘Never mind love.  At least you’ve got a single’ said a kindly porter.  Oh yes, I thought, how lucky.  Privacy.  No snorers. No other patient listening in on my so-called private conversations with my consultant.  All true.  All good.  But completely offset by the following.   Unless you are very,  very lucky, there are generally only two reasons why you might be given a single room in the NHS today.

1) You are deemed to be officially just too irritating for other patients to bear.   You can of course take advantage of this premise.  Find yourself in a mixed ward with a snorer on one side and an incessant talker on the other, then by all means have a go ….pretend you’re a nutter for a couple of days and you might just get moved (or sectioned).  But singing Kylie on a loop for 48 hours or taking off all your clothes every time a nurse comes in, can be a bit debillitating in itself.  And the staff aren’t daft.    Anyway watch out for the other patients if you decide to take this path.  We’re an unforgiving lot what with our confined space and bad food.  I once found myself in a single room opposite another single room whose occupant  had such issues.    At first I was sympathetic  to his shouts of Help every 3 seconds.  When it continued remorselessly for 24 hours, I was less sympathetic  and raging at the system that had put someone with drastic mental health issues in a room next to me.  When ‘Help’ turned into racist taunts of the staff, smearing his excrement on the food trolley, and throwing furniture into my room once a day, I lost all sympathy and am ashamed to admit I spent the days that followed planning a detailed operation to pass on my superbug by spitting into his water jug.  (Didn’t actually carry that one out).

2)  Single room in hospital equals superbug.  Most commonly MRSA or C Difficile (which I had).   OK so you might be vomiting for England but hey, at least you can do it in peace.  And you get to amuse yourself by watching the various means the staff come in and out of your room.  First we have what I call the Stormtrooper approach.    Masked, hooded, gloved – is there a nurse in there?   You watch the major dressing up operation just outside your door and wonder if you’ve actually got leprosy rather than a vomiting bug.    Then we have the Indiana Jones types.  Minimum apparel, a quick push on the handgel, and then before you have chance to say MRSA, somehow Indy has got across the room, retrieved your full bed pan and got it outside with barely any surfaces touched and  nothing more than a whipcrack of the plastic gloves.    And then sadly we still very occasionally get the parliamentary candidate approach.  Press the flesh as much as possible without thinking of the consequences and then sally forth into the next ward, without so much of a glance at the handgel, to press yet more flesh.   In my years in the NHS I thankfully see fewer of these types but they’re not extinct quite yet.

I’ve always felt quite isolated and vulnerable in a single room.  The reason you’re in hospital in the first place is because you’re pretty poorly and you need some attention.   In a single room, unless you’re in intensive care,  you will spend large swathes of the day alone, trying not to be a needy type and pressing the call bell too much.     If you’re on a ward with other people at least you can grab a nurse as she walks past, have a bit of conversation with the other beds, listen in to everyone else’s ward round consultation.    And the staff glance at you when they walk past, a quick check to make sure you’re ok.  I once spent three weeks in a single room.  I’d got into the habit at night of shutting the door so I could ignore my mad neighbour and sleep. Then they let me home for a night during which I had several seizures, fell out of bed and had to be blue lighted back to hospital.  My husband was there in the room with me.   Had I been on the ward in my single room, I’m not sure anyone would have found me until the next morning.

So when you’re sat on your bed, desperate for some privacy,  irritated by the woman in the next door bed,  fed up of sharing a loo …just be careful what you wish for.   A single room in hospital isn’t always worth a supplement.