Chronicles of the Heart, Part 29…

Some weeks ago, I wrote to my cardiologist, explaining my reasons for declining diagnostic tests which carried too high a risk. He was on holiday at the time.

Now he’s apparently returned, and I’ve had a reply to my letter that I can only perceive as needlessly snotty “I look forward to seeing the results of your non-invasive tests.”

OK, I know it’s unwise to attribute tone to the written word, but all he needed to say was “Thank you. I’ve noted your comments.” That’s all. And, of course, he’s ignored the rest of the letter.

So, yes, I think he’s having a pop at me; perhaps he forgets that I have a right to refuse any procedure or medication if I feel the risk is too high, or it’s pointless. I wrote a 4 or 5 page letter, detailing the heart-related problems that I’ve had over the past 20-odd years,  which have been routinely rubbished by my GP and, on one occasion, by APH,  and all he took from it was my objection to a high-risk, invasive procedure.

He’ll be even more disenchanted, then, when I couldn’t keep my appointment, today** for an ambulant ECG, or Tuesday’s to have the gadget removed (because the delivery of my new powerchair has been screwed up!). Mind you, Tuesday’s was for 09.00, so that would have had to be rearranged as there’s not a hope in hell of me being able to keep an appointment at that time (or get a taxi, as they’re tied up taking people to work or even kids to school).

** As it’s turned out, I felt so appallingly awful today, I couldtn’t even cobble the words together to phone the hospital and tell them (yes, I know I can type – sort of – you should see it before it’s corrected!). And I was so tired, this morning, I was hallucinating (or dreaming while awake which, from my perspective, is little different).

The problem is, as I’ve said before, Arrowe Park Hospital’s appointment system (other hospitals too, maybe, I don’t know), pays absolutely no heed to the out-patient’s physical condition or to their ability to actually keep an appointment which is physically beyond them (nor, based on my experience, does telling them actually make any difference). In my case, apart from serious mobility problems (hence the powerchair), I’m doing well if I actually stop coughing my nuts off much before midday! Additionally, today, after a more or less sleepless night, I have an IBS flare-up, a killer headache, and for some unknown reason, my eyes hurt. A lot. (It’s evening now and my eyes no longer hurt. They burn.)

I know hospitals like patients to turn up to suit their timetable, but it would save time, and cancelled/missed appointments, if they actually talked to patients and ascertained what times were good for them, and if/how they could physically get there.

Obviously there’s a downside – too many patients wanting the same time slot –  but it would be a step in the right direction. Saying to a patient who is seriously ill, turn up and this or that time, especially if it’s early in the day, doesn’t work – find out what times we can actually get there with any degree of certainty first.

For example, if I have an appointment around midday, then I need to start getting ready no later than 08.00 on a very good day, and on a bad day maybe 06.00, as frequent rests are needed – the worse I am, the greater the ratio of rest time to activity time. It follows, then, that for early appointments, say the entirely too optimistic 09.00, I need to start getting ready about 05.00 or even 03.00, which is absolutely out of the question. Hell, I might not even be asleep by 03.00 as, indeed, I wasn’t last night.

Hospital administrators and, indeed, consultants, appear to assume that patients fall into two groups – in-patients, mostly tucked up in bed and needing care (good luck with that at APH, ward 32), and available for whatever testing they need, and out-patients, who are fully mobile and at their beck and call. Those of us whom they know, from their records, cannot possibly be at their beck and call are simply ignored.

That group, of course, includes me, and we are not mobile, except with considerable difficulty and expense, have a very restricted window of opportunity for doing anything at all beyond the absolute minimum, and cannot plan because we don’t know, until it arrives, exactly what we are going to be capable of on any given day. Which, very often is bugger all.

To compound the problem, my consultant seems not to understand – or simply doesn’t care, in which case I badly misjudged him – that last time I was there, being forced to hike halfway across the goddamned hospital, because no-one would help me, is entirely responsible for the relapse in which I find myself now.

And then there’s cost, which I’ve covered previously, though I think it was just on Twitter, as I can’t find it here. I have (because tomorrow and Tuesday will doubtless be reinstated at some point), £75 worth of taxi fares to find (alternatives to taxis have fallen to pieces because no-one can guarantee they’ll be able to accommodate my powerchair at the appropriate time, space being limited), so taxis are the only way I can be sure of getting there on time. If it was summer, I’d go the whole way in  my powerchair – it’s a tad under 4 miles – but it’s not, it’s winter and it’s cold and wet (mind you, there’s every chance of summer being warmer and just as wet!).

Again, hospital admin spares not a thought for how patients get there, or whether they can afford frequent appointments. Arranging several O P appointments in one day seems to be beyond their ability (look, you lot, if you have a bunch of tests to run on one patient, admit them for the day, don’t have them repeatedly coming to the hospital – or repeatedly cancelling).

Arranging an ambulance transfer has been hived off to GPs (and needs to be taken back in-house by hospitals), but ambulances take ambulant patients, with limited space for manual wheelchairs, never mind powerchairs. And, of course, it’s impossible for everyone on board to be there at the right time for their appointment.

But – and here we are back, more or less, where we came in – even if free or reasonable-cost transport could be arranged, I don’t still don’t know, until the day arrives, what sort of condition I’m going to be in and whether I can keep my appointment. Like today.

Ideally, I need an appointment as close to noon as possible. At that point I’m as good – for a given value of good – as I’m going to be, and there’s a narrow window of an hour or two, before I start to deteriorate again.

And even if the hospital co-operated in arranging that, there would still be no guarantee I could be there – such guarantees just aren’t possible in my world. Even if I’d had my powerchair in time, today’s appointment simply would not have happened – I didn’t actually wake up, in any meaningful way, until after midday

I don’t know what the answer is, but I do know that without some co-operation and thought on the part of the appointments staff, or a radical change in OPD appointment procedures, then I’m screwed. And I doubt I’m alone.

I am, right now, seriously considering just opting out of the whole affair. I wanted the appointment with this consultant to establish once and for all whether I really had heart failure. I do, that’s no longer a matter for debate.

As for the tests, they won’t change anything (well, OK, the ones I’ve refused might have turned me into a vegetable, which is my I declined them). I’ve already decided that surgery (aortic valve replacement, for example), isn’t a viable option, as it would have little effect on my life-expectancy, and relatively minimal impact on my quality of life, as my COPD and heart failure will remain, so the stress and pain wouldn’t be worthwhile even if I survived the surgery, which is by no means a certainty. Nor would I contemplate for one moment a heart-lung transplant not, I think, that I would I be offered one at my age.

If I can I’ll go along with the tests in the hope they might lead to better meds. Other than that I have no expectations at all. And let’s face it, if my GP wasn’t such an utterly useless bugger, we could work out the meds between us, and both sides would save time and money.

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4 thoughts on “Chronicles of the Heart, Part 29…

  1. Dear Ron,

    I really feel for you going through such a dreadful ordeal. Love your blogs, you put me to shame getting so much done. I hope you have better days soon.

    So much that you describe with regards to the practical difficulties of life I totally recognize through caring for my son (cerebral palsy) and me (leaking mitral and aortic valves, with regurgitation and vagel syncopy, though it’s nothing compared to your health problems). We recently had to go to Eye Dept at local hospital. Anyway the nightmare with appointments very similar to yours. We got an appointment for 9am. With son’s many problems(swallowing/ eating/washing/dressing etc…) I worked out we would have to get up a 5am to make such an early appointment. The appointments hitler would not change it, had to complain to get it moved. Then appointment included a bad attack of “does he take sugar with his tea” whilst ignoring my son. Despite repeatedly telling the doctor to ask my son how he was feeling, he continued to ignore him and talk to me. Next the doctor committed something close to assault of my son, having not asked his permission or giving any pain relief or explanation first, a stick with a swab was pushed into his eye without warning, very painful. I can’t see the point in this as his eye has been drenched in antibiotics for 2 weeks so, surely no bacteria will grow. Idiotic. Offensive, behaving as if son has no rights. Very unhappy.

    Also there is a complete failure to take into account difficulties with disability and journey, we have to take 3 buses to get to hospital including many opportunities for stranger abuse, which has become a normal part of life. Sometimes I despair but there’s nothing to be gained by that.

    Wishing you many better days. Best wishes from
    Rebecca (Carbonised)

    • Hi Rebecca,

      No shame – we all handle life’s crap the best way we can. Some people get drunk, I write.

      Have they not offered mitral and/or aortic valve replacement? They’re pretty routine these days. I wouldn’t have it, as I said – at my age, and with the other stuff that’s wrong, it’s just not worth it even if I survived, but I’m assuming you’re a lot younger than me.

      That doctor sounds like an idiot. I can’t abide having my eyes touched (unless I do it; same with needles, I can happily dig a splinter out with one, but can’t abide anyone sticking a hypo sticking them in me), but done properly a swab is completely painless, as any puss will gather, by gravity, under the bottom lid, just roll it down and gently swab the “gutter” between the lid and eyeball – no pain, no hassle.

      Anyway, gonna write to my consultant tomorrow, explaining why I wasn’t there and asking if there’s any chance he can rearrange it while I’m picking up a sleep apnoea CPAP monitoring kit next week – in both cases they’re 10-15 minute jobs so how hard can it be to squeeze in? Save me 15 quid too!

      He’s investigating why I wake up breathless in the night – I have stage 4 COPD and heart failure – what’s to investigate? It’s a given!

      Anyway, try not to take numb-nuts doctors too personally – there’s just too many of the buggers! The problem is very, very, few doctors have any experience of pain – it’s something that happens to other people. Personally, I think every junior doctor, in their final year, should be sent off to backpack the Pennine Way, carrying camping gear, clothes and food for two weeks, and no mobile phone or money. Teach them the meaning of pain (especially as for a novice the PW takes almost 3 weeks, so they’ll learn about hunger too!). I think it’d be great experience. (Backpacking always hurts, no matter how long you do it – but for newbies, it hurts more as they haven’t figured out ways to make it hurt less – or shut it out, which works better.)

      That might all sound a bit pretentious, but if you never experience your own pain, you simply can’t relate to other people’s – and doctors need to – badly.

      Right, getting late and time to wind down – after a day like today, I don’t think staying online until the small hours is wise. I’m frazzled.

      Take it easy, and I hope things pick up for you, and your son.

      Ron.

  2. Hi Ron,you may have been asked this before,do APH have a pals service no harm in trying them let them know how ill you are and with regards to transport problems you face, also can you not speak to the north west ambulance dept;direct? they may offer some good advice.
    Hope this is of some help mate.
    Good Luck and take care.
    Regards
    Tom

    • Hi Tom,

      PALS answer was “We don’t know,” in which case, just what good are they? I checked out all the available options, but none can guarantee either having room for my chair or getting me there on time. Some can reserve chair space, but I’m still stuck with the time problem as they have multiple passengers to collect.

      I only once used the ambulance service, and that was 26 years ago when I was a hell of a lot better than I am now, and they picked me up about 2 hours before my appointment, did a tour of Wirral picking up more people, before finally getting to the hospital. The possibility of my being ready 2 hours or even more, depending on my position on the route, before my appointment time now is effectively zero.

      And that was when arranging it was simple, as it was organised by the hospital. Now I’d have to persuade my GP who, until very recently, didn’t even believe I had a heart problem, and has no clue as to the scale of the problem as he never shows his face, despite knowing I’m housebound and, also, being in the building several times a week – how hard would it be just to give me a knock?

      The only way I can guarantee getting there on time is shoving my chair in a black cab. And as with everything else, convenience costs.

      Ron.

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