By which I mean what steps are taken to prevent a seriously ill outpatient who is too sick to attend an appointment, falling through the holes in the system?
Today, I have a cardiology appointment, one I have been waiting 8 months for – but there’s a problem – I’m too ill to go. I have a respiratory infection, a killer headache, nausea, my kidneys hurt (long-term diuretic problem, presumably), and all the problems I’d blamed my heart meds for are back with a vengeance, plus a whole load of ME/CFS-related shit, like a 15-pint hangover, without having had the fun part first!
And my arthritis has flared up because I had the temerity to cook yesterday – when I feel able I cook for the freezer. My hips are killing me so walking is out, ditto my hands, so can’t use my chair. I am seriously screwed.
Oh, and I’ve restarted the Candesartan – it seems, and I have tried before, that I can’t get by without it. This drug is specifically for heart failure and, if I stop taking it, I deteriorate dramatically. To me, that confirms I have heart failure – if it looks like a duck, walks like a duck, and bloody well quacks like a duck, it’s a goddamned duck!
There’s another problem too – the hospital appointments department is inaccessible due to “the high level of calls” so, as yet, I’ve not been able to tell anyone. Last attempt, shortly after 10.00, I was asked to leave my name and number and they’d call me back. If they had the foresight to include a fax number on their letter, or an email address, there wouldn’t be a problem.
As regular readers will know, I have a heart problem that may well prove fatal pretty damn quickly (2-year life expectancy is 50% and one year is almost gone). Yes, I know that doesn’t mean I’ll definitely die during the next year, but add in all the other things that are wrong with me, and it kinda does mean my life expectancy will be curtailed.
The hospital appointment is for a second opinion. All I want to happen is that a consultant cardiologist reviews my case, particularly the echocardiogram results, and gives me a sensible, unbiased answer to the question how long have I got? (And yes, I do realise that expecting precision is unreasonable – I’ll settle for a ball-park figure, which is more than I have now.)
I know what’s wrong with me, it’s the interpretation of the prognosis that I’m questioning as I have reason to believe the previous doctor – not a consultant, but a GP with “a special interest in cardiology”** – deliberately skewed the results to “prove” I don’t have heart failure when all the evidence says I do.
**That sucks – I have a special interest in beer – doesn’t make me a master brewer though!
The thing is, though, that without me, my case isn’t going to be reviewed, which is insane – the documentation is there, it doesn’t need my presence. My situation cannot be unique – I have a life-threatening illness but am too ill to attend the OPD – yet there appears to be no mechanism in place to deal with this. Why not? Hospitals, by their very nature, must encounter patients not ill enough to be admitted, but too ill to attend outpatients, yet there is no system in place to deal with this eventuality. How many deaths per year does this cause, I wonder?
Right now, given the inaccessibility of the appointments office, I have no idea whether they will be able to reschedule my appointment or whether I’ll have to start the whole tedious referral crap all over again. I’d like to be able to sleep, or at least just slob out, until I feel better, but I can’t, I have to wait for the bloody hospital to call, which is why I’m typing this.
It’s now past noon – no call-back from Arrow Park, still can’t get through if I call them. This is bloody ridiculous. Just been rummaging through their website, there is simply no way of accessing the appointments office except by phone, which is so short-sighted it beggars belief.
And to add insult to injury, I’ve just discovered that the consultant to whom I was referred isn’t even at Arrowe Park Hospital (according to their website), so there’s no telling who I’d have seen.
I am officially sick of this shit! I am instructed to contact the appointments office in the event I’m unable to keep my appointment. The only way of doing this at short notice is by phone (the only alternative is by post), and that simply doesn’t work.
hi ron i know how you feel,i have been ringing the dental hospital all frid and all today its either engaged ,or it just rings as long as your arm will support the phone, like you, they said they would ring back last thurs still waitting. good luck pal.adgeboy
Wound up emailing the bastards, one to Complaints, telling them their system sucked, and they should publish email address and fax number for the appointments office, as they simply can’t deal with the phone calls they get, and one to the general enquiries address, asking both to pass it on to cardiology and appointments. No reply from either.
Time was when you could actually phone the bloody clinic and say sorry, I can’t come. Not any more.
Can totally relate. It’s a huge problem where I live that if you’re too ill to attend your appointment – for whatever reason – there is no mechanism to enable you to access support or even get in touch.
The hospitals here claim the are “not on email” which I have reason to believe is untrue and also, if it is true, is utterly ludicrous. It’s also a breach of the Equality Act – as someone who is only partially verbal and who has also worked with the Deaf community, it is pretty obvious to me that insisting on phone communication is excluding certain sections of the population, especially as textphones are pretty pricey and not just the initial outlay, but also you get increased phone bills due to the way they are charged for by phone companies.
And woe betide that people with autism or mental health issues say they can’t use a phone, because we just need to stop being silly and try harder, because those disabilities aren’t real, right? Argh!
There’s also an issue here of out of hours services insisting that you go to A&E if you are ill after office hours.
Well, again, A&E is not accessible if you are autistic and the local hospital won’t make any reasonable adjustments (Equality Act and Autism Act 2010 anyone?) for this and won’t even take it seriously. Apparently autism is not a disabling neurodevelopmental condition, it is just ‘diva’ behaviour.
So again, you either go to A&E or you go without help, or you wait until your condition deteriorates enough that you call an ambulance (and they are generally reluctant to come out here for any reason at alll) or you get sectioned on a 136 by the police!
Like you say, utterly ridiculous situation, whatever the type and nature of your needs.
Then if you can’t go to appointments and can’t contact them or get through their busy phone lines, you get a letter having a go at you for not bothering to turn up. *sigh*
It seems the complaints department can’t be bothered either, as they – unbelievably – passed the buck to PALS. To their credit they contacted cardio, explained, and they’re sending out a new appointment, but whether they were told before my appointment I have no idea, so I might have been flagged as a no-show anyway.
I wouldn’t mind, but many departments have published email addresses, but not the clinics and not appointments, and probably they need to be contacted on a regular basis by patients.
I won’t use the phone if it’s anything important. Since I developed ME (or maybe the lightning strike fried a few synapses like it fried everything else), I simply can’t remember conversations so, if it matters, I use email or fax. In fact my memory, except for a few outstanding events, is pretty much a blur after a few days. On Tuesday, for example, I found a u-v filter attached to the lens of my DSLR. I know I ordered it, I have absolutely no memory of receiving it, or fitting it! Perversely, my learning ability remains unimpaired. Go figure . . .