Tag Archives: patient

Cancer again, and finding out by accident

A week ago I had a completely appalling conversation. Short, but devastating. I suspect it’s something that happens fairly frequently. As an indicator of where we are with person-centred care, and ‘great conversations’, it leaves a little to be desired. It went like this.image

Last autumn, after a regular scan and Oncology appointment, we set a date for the next appointment. I’ve had lots of scans since my first diagnosis in 2001 (50+), so we set a bigger interval than usual, and the appointment was made for August 5th. A couple of months ago the CT date came through and it was for Friday July 1st, five weeks before the appointment with the consultant.

So, I had the scan at the beginning of July, and I got a call week later from the Oncolcogist’s secretary, asking would I like to come in on July 15th, instead of waiting until August 5th? This set alarm bells ringing, so I asked:  ‘Should I be concerned about the appointment being brought forward?’ ‘Oh, no,’ said the Oncolcogist’s secretary, ‘we haven’t had the report yet.’

Relieved, and re-assured, I didn’t pursue this, and assumed that someone somewhere had noticed the 5-week gap. So we negotiated a date for July 15th, at 4pm, at the end of a long Friday afternoon clinic.

So far so good.

The conversation

On the Monday – the next working day – it all went pear-shaped. I got a call late morning, from a young women, from admin: ‘I understand that a colleague called you on Friday to arrange an appointment for 4pm this coming Friday?’

Me: ‘Yes…’

‘Well, the doctor now has to leave at 2.30pm…’

Now, there wasn’t actually a break in the conversation at this point, but in Fiona World, time stopped and in my head I was shouting: ‘If the doctor has to leave early, bounce my appointment. Let it be put back a couple of weeks. Please let it not be a priority. Bounce me, bounce me, bounce me.’

‘So…’ she said, ‘Could you come in at 2 o’clock so that the doctor can see you?’

Shit. So, really not ‘bounceable’. I had already (and I think innocently) been jemmied into the back end of a busy Friday afternoon clinic. Now the busy clinic was being curtailed, and loads of people would be getting postponed, moved, cancelled. And I – the Johnny-come-lately who wasn’t originally going to be seen until August – was suddenly the appalled owner of  one of a tiny handful of ‘golden tickets.’

I knew there was no point trying to get any more info or reassurance out of the young woman, who had clearly been given a task and a list, and had neither the knowledge nor the authority to disclose anything further. I didn’t try.

So I accepted the appointment. She said something like ‘That’s lovely then. Good bye.’

And that was that.

There isn’t a cancer patient in the world who wouldn’t jump to the same conclusion I did: that the scan result was ‘significant’. Discussions had to be had. Possibilities weighed up. Plans needed to be made. Clearly my renal cancer had returned.

The consequence of the call

How can this happen? How can anyone think that this is a good way of getting information to a patient? A useful conversation to have with a patient? And hasn’t anyone considered what this looks like from the patient perspective?

I – we, thank goodness – were left to sit out four days until the appointment, with no option but to speculate on the precise scale of the shit-storm that was about to be visited on us. You can imagine what was going throug our heads: from the worst – untreatable tumours everywhere, through more ‘challenging’ or multiple tumours in my bones/head/liver; and difficult/risky surgery (again)  followed by lots of shite; down to the best outcome in this surreal world – a single lesion that’s reasonably easily-get-at-able.

The level of completely unintentional carelessness that this conversation emelodies is difficult to describe.

This is an example not of ‘person-centred care’ but something you could only call ‘patient-orientated carelessness‘.

  • Either no-one considered the effect this type of conversation would have on a patient, which you could characterise as a ‘not thinking’, ‘careless’ type of carelessness. Like teenagers with a stash of dirty plates in their bedrooms, because it just hasn’t occurred to them to bring the stuff downstairs. No-one had even considered what impact the conversation might have on a patient.
  • Or the effect was considered, but no one thought it mattered, which amounts to an actual ‘lack-of care’ kind of carelessness. Worse, in fact.

But either way, I t’s actually a complete absence of care, or of caring.

The rational for the process

I completely understand the policy that says that you don’t want to impart bad news to a patient over the phone – distressed patients, no support, no-one with them. That you really want a proper conversation in appropriate surroundings with support and information on hand.

But the way that this was done – and I’m sure this wasn’t a rare occurrence – meant that I might as well have been phoned with the stark news. Even the most difficult conversation with an oncologist or a nurse over the phone has to be better than effectively getting the same news from a poor lass in admin, via a conversation about appointment times.

Because the way that this was done meant that I was, effectively given the bad news, but accidentally, by a poor lass from admin who almost certainly had no idea what the conversation meant at my end of the phone line.

So I got the bad news anyway, by accident, without any input from a professional, or any support. Lose-lose.

To reiterate, it was perfectly clear and unambiguous to me what the call meant. But the system, the process, the pathway, maintains a pretence that it’s ‘just a call about an appointment time’.

Does the system think I haven’t got a brain???  That I can’t put two and two together?

What’s the solution?

So how should we be reallocating and prioritising appointments without letting the cat out of the bag? As far as I can see, the only solution is to ensure that all patients are seen in a timely way after a scan, so that no-one – regardless of the outcome – has to be ‘brought forward’ and alarmed in the process.

The result of the scan

Yeah, my cancer has recurred. It wasn’t entirely unexpected, because we’ve always known the cancer – characterised as ‘oligometastatic’ – was more than likely to come back and bite me. It’s a small-ish lesion, just one (at the time of writing, at least), in my right, remaining, kidney. It’s one of the strange things about Cancer World (CancerIsUs?) that it comes as a relief when it looks as though there’s only one tumour.

We’re probably going to blast it, in a process called pulsed radiofrequency ablation. Should be do-able. Shouldn’t be as bad as the last go-round’, which involved a Whipple’s. Then we go back to scanning until the next little fecker turns up.

 

 

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28-day prescribing drives me barmy

Policies promoting 28-day prescribing by GPs ‘are likely to be a false economy as they cost at least as much as they are projected to save’. So said Pulse magazine (in October 2012).

What they didn’t say is that from a patient’s point of view – particularly if you have long-term conditions (LTCs) – the policy also drives you to distraction.

Minding the engine

There’s a certain amount of stuff I need, just to keep me ticking over. I’ve had a Whipple’s procedure, so my re-built upper GI tract resembles the air filter that the lads at Houston jury-rigged for the beleaguered crew of the Apollo 13 team; that is to say, it looks like something you’ve made out of the extra tools you get with a vacuum cleaner. As a result:

  • I need to take omeprazole and a low dose of aspirin every day.
  • The diabetes that you get thrown in free with a Whipple’s means I also need insulin, and the gear that goes with blood-glucose testing several times a day.
  • And the lack of pancreas (that rather zippily puts the pancreatico in ‘pancreaticoduodenectomy’) requires that, whenever I eat, I replace my absent digestive enzymes with Creon (used widely by people with cystic fibrosis).

I mostly only see the doctor, every three months, to get my prescription reviewed and signed off again.

So, what’s my beef?

I can only get 28 days supply. This is rubbish on a number of counts.

First, I’m not going to use any more drugs or paraphernalia, just for fun, just because it’s there. The arguments about wastage – that people throw away or stop taking their antibiotics because their cough has gone – don’t apply here. I’m not going to stop taking Creon with everything I eat (really). I’m not going to leave the insulin in the cabinet because I think the diabetes has cleared up. And you don’t finger-prick for fun. If you do, go to a more appropriate website. So giving me three month’s supply won’t lead to wastage, and that’s clear if you just look at what I’m taking.

Second, the article above makes it perfectly clear that surgery staff – GPs, receptionists, dispensers and clerical staff, as well as pharmacists – are spending an inordinate amount of time, doing an inordinate amount of paperwork reviewing and signing off regular prescriptions. I appreciate that it is important to review meds, for many reasons. But in my case, and I’m sure in that of many others, the requirement for this stuff is absolutely not going to go away. Not until, ahem, you know… This is stuff that we’re stuck with. So reviewing it monthly is pointless as well as expensive.

The third thing that bothers me is the sheer tedium of the process. It’s bad enough, as you may know yourself, taking drugs everyday. It’s even more tedious managing diabetes, every single time you eat or drink, and often in between. (Yes, yes, it’s the price of the life-preserving cancer surgery. I’m fine with that, and grateful, and happy to be alive. Sorry. I just dropped my zen there for a minute.) So it’d be a boon to me, it’d actually be a small glory, not to have to worry about my prescription quite so regularly. Not to have to calculate how soon to re-order. Are we running into a Bank Holiday? Can I get down there on Friday? Better explain that I’m going away, so ordering early. Having an LTC is inconvenient, but mainly it’s tedious. It is absolutely not fascinating, so try not to say that next time you’re tempted to pore over my gear. It’d be just a bit less tedious to be able to go three months instead of 28 days. It’d be, yer know, nice.

Now, to understand the fourth whinge, there’s a thing you have to get about rural practices*. What happens is that when I get a prescription – a regular one or one written during a consultation – it’s dispensed in-house. There is a policy that if you live in an outlying village your stuff is dispensed at the surgery. Mostly this is seen as a benefit but, honestly, I think it’s a bit weird and I’ve never really got it. The pharmacy is only a very short walk from from the GP surgery, and if you’ve made the trip from home (3 miles or so for me), whether it’s by car, bus-what-bus, or Shanks’s pony, going to the pharmacy as well is barely a hardship. But there you go. (There’s a downside to this, mind, because if, like today, I see a GP and they give me the script for my regular drugs, there won’t be any Creon in. They never have the Creon in because ‘it isn’t prescribed regularly’. You think? So I have to make a return trip anyway, always, thus negating any possible benefit of dispensing in-house.)  (* Don’t be grubby.)

Anyway, my fourth point is that, because of the above, I have to go to the surgery, every 28 days, to pick up my prescription and, in all likelihood, sit there and wait while it’s dispensed. It’s lovely, and the staff are nice. But just going, just parking there, just being there, with the institutional chairs, with the coughers and the dribbly, fevered children, every 28 days, make you feel… well…  like a patient. I know. I know, I am. But most of the time I’m not ill, I’m just managing my LTCs, with all the other bloody ‘expert patients’, and getting on with my life, which I happen to like and enjoy. And it always just makes me a bit miserable and to be honest a bit resentful, to be reeled in again to the bleeding surgery. If I had a 3-month prescription I’d honestly feel better, freer, less tethered to the service. Yes, less tethered.

Patient-centredness

Funny, isn’t it, how patient-centredness keeps coming up? Where is the patient-centredness in this unthinking blanket approach? Where is the self-management? The trust in ‘lived experience’? My message to the Royal College of General Practitioners would be short and sweet:

  • Don’t assume wastage. Look at what I’m actually taking and question whether it’s likely that I’ll leave it in the cabinet.
  • Don’t review stuff on a 28-day basis that I’m definitely going to need for ever.
  • Give me a break from the relentlessness. I’ve got so many better things to do.
  • Release me from this pointless umbilical cord and trust me.

Come on, guys. You were the bright ones in your class. Use some discretion.


Patient-centredness is close to my heart. If it’s close to yours, you might want to take a look at the Coalition for Collaborative Care, which is working to put patients front and centre of their own care.