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.

 

 

Cystic Fibrosis – a good news story?

I do love it when I hear a good news story.  The medical breakthrough, the new therapy that’s going to save lives, or if not, at least improve them.

There was one such story doing the rounds last week.  A new gene therapy for Cystic Fibrosis, a debilitating lung condition which leads to an average life expectancy of 41. In the trial the lungs of patients who took the drug improved over the period by about 3% while those who didn’t take the gene therapy saw their lungs decline.

We were introduced to a lively 16 year old, Mary, on the Today programme on Radio 4. She’d taken part in the trials without knowing whether she was part of a control group or actually taking the drug.  Within a month she’d noticed an increase in energy.  She was able to do more school work and activities with her family.  Her mum, Debbie, said it was ‘like a magic trick’ and pointed out, by the time the trial ended, her condition had improved so much that they could leave her wheelchair in the car.

Brilliant.  Fantastic.  What an amazing good news story.  Except of course it turns out it’s not such good news for Mary.  Yes it’s a significant breakthrough, but in scientific terms, the effects were ‘variable and modest’.   Her doctors  can’t just put her on the drug without more research.  And the universities that did this research have run out of funding.  Prof Eric Alton from Imperial College London says the group is “in negotiation with a large number of companies to say we need a rapid study”.

But rapid isn’t exactly the word I would use.  Even if one of the pharmaceutical companies takes it on, the earliest Professor Alton can see a study happening is ‘the end of next year’.  18 months away.  And that’s just the next study.  It’ll be at least five years until the therapy will be available to patients.

Isn’t it time to speed this stuff up a bit? Mary’s cystic fibrosis  is getting worse.  Since she came off the trial she’s gone downhill, had recurrent infections, been hospitalised.  And yet it’s a full year and a half before another study might even start.

We can all imagine why.  Endless emails, meetings, reports which take a month to write and then another month for someone to read, medical bodies to consult.  And of course we’re relying on a pharmaceutical company deciding the drug is commercially viable.  That the drug will make enough profit.  That the NHS will be able to afford to buy it.    All this talk takes time.  Meanwhile  Mary is struggling to breathe.

I’m not a red-tape whinger.  Sometimes what others call red tape, I think is sensible health and safety.  But I object to a system which seems to accept this type of delay.  What can’t the Medical Research Council, the National Institute of Health Research and the pharmaceutical companies get into a room together next week and work this out?  Let’s start the next trial next month not next year.

Debbie, Mary’s mum ended her BBC interview talking about the second study.  “Anything that can be done to help the second phase is …….” She paused, straining to find the right word.  “Paramount” is what she came up with.   But what word do you pick to describe the urgency when you’re looking at your 16 year old daughter gasping for air?

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.