Taking your own drugs in hospital is a right…

Regular readers, or even those who have just read my last post, will be aware that my stay in Arrowe Park Hospital, Wirral, was not a happy one, the main bone of contention being my insistence on taking my own medication according to my own timetable – something with which the hospital could not comply (they have their own timetable, which was no use to me). I had a perfect right to do that, something the nursing staff were ignorant of. Or just bloody-minded!

So to avoid a repetition, I’ve put together the following document, which will be handed to the staff nurse when I am (almost inevitably, I’m afraid), admitted to Arrowe Park in the future. I suggest anyone else who has to take a lot of medication over a long period writes something similar – hell you can copy and personalise this if you like. Because if you want to continue to take your own meds at the times when you have become accustomed to taking them, you’ll have to be prepared to stand up for your rights. And you need to because the ward drugs rounds, which might have been OK 60 years ago, are hopelessly incapable of providing medication at need which, let’s face it, is dangerous – I need my meds when they’re due, not when some bureaucrat says I can have them.

Whatever horror stories they tell you – that you’ll overdose (why should you, you don’t at home!), or deranged people from the psych ward will steal your drugs and kill themselves (they tried both on me), don’t listen, and don’t allow them to lock up your drugs. They don’t have the right, and when someone, apparently a matron, came along to try and lean on me, I told her if she touched my meds she’d be talking to my lawyers; she smartly buggered off

Then there’s the question of whether hospitals can supply your drugs – in my case, they hadn’t a prayer, and if I hadn’t taken my own along, I’d have been screwed because, despite all their bitching and whining, they couldn’t have supplied most of my drugs.

This, then, is what they’ll be getting next time they see me. I doubt it’ll make me any more popular than last time, but I couldn’t give a bugger.

By the way, the “The following dosages (inhalers), are as determined by…” section is because an awful lot of medical people, especially those with bugger all in the way of knowledge of my condition, seem to have an overwhelming urge to tell me my doses are too high. The doses were set by people with a bloody sight more expertise than they have!

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Medication Timetable.

GRAVES, Ronald

DOB 12-10-1944

NHS No. 442-XXX-XXX

MRN: 40XXXXX

Obviously, the original shows the full NHS and Medical Record Number but it would be foolish to post them here.

Please insert this document into my file in a prominent position, so that all who need to be aware of it can be. I have taken legal advice, confirmed by APH administration today, that it is my right to take my own medication if I so wish, without being constantly harassed by nursing staff (see below), as a result.

The medication schedule is one which I have devised, and used for the better part of 20 years, and which maintains my stability (it also ensures that blood plasma levels of Aminophylline do not fluctuate undesirably – with this drug, the differences between therapeutic, toxic and ineffective can be tiny. In this context the fact that it is a sustained release product is irrelevant – it most certainly does not mean that I can wait for my dose until someone chooses to give it to me, as has been the case in the past at APH.

The ward drugs rounds are useless to me in the light of my normal medication routine, which starts at 05.00 (or, in hospital, on waking, which might be a little later – setting an alarm isn’t feasible), and goes through to midnight, or thereabouts. It follows, then, that the normal drugs rounds at 10.00 and 22.00, a system that might have been appropriate 50 years ago, but most certainly is not these days, is no use to me.

My schedule is clearly not compatible with the ward schedule, which is why I have my own supply of drugs which will remain in my possession, to be taken as detailed below. They will not be surrendered, to be locked away where I cannot get at them when needed. This, I have verified, is my legal right.

It was also the case that the pharmacy was unable to supply the one drug I had come without (because I was anticipating a delivery the day I was admitted). If you cannot supply ALL my drugs, never mind supply them when needed, then any objections to my taking my own are baseless.

The drugs will remain in my close care, and the claim, made last time, that there are disturbed patients who might steal them, will be treated with the contempt it deserves. If disturbed patients really are wandering around unsupervised, and stealing, then somebody isn’t doing their job, though it’s worth saying that I saw no evidence of this, and believe it to have been a lie.

I have an in-depth knowledge of my medical conditions and the treatment required, based on long experience and extensive study. I know exactly what I am doing. The fact that I am admitted to hospital does not mean that I leave my faculties at the door.

There seems, too, to be a blanket assumption, among nursing staff, that self-medicating patients are cretins, just waiting to cause trouble by overdosing and dying on the ward – an attitude I find extremely offensive. I conspicuously fail to over-dose every day of my life – why on earth should I do so just because I am in hospital?

Please be further advised that it is my decision not to accept anti-clotting injections unless I am proven to be at risk. It is my right, as long as I am conscious and competent, to refuse any treatment, should I disapprove of it or feel, as here, that it is unnecessary, and I do not want to have to debate this position several times a day, as happened previously, with staff who clearly have no idea of the rights of the patient. I do not accept drugs without question, simply because everybody else is doing so… Your staff seem to have no idea of the concept of informed consent. That needs to change.

After all, I have no idea whether the injection will conflict with anything I’m already taking – nor, I’ll wager, does anyone else on the ward. It appeared to be administered purely as a matter of routine, even to one patient who was so active he was mostly absent from the ward for much of the day.

The reason I will refuse the injection, incidentally, is that unless I am in bed, and/or unconscious, I am no more sedentary in APH than I would be at home. In fact, I was, last time anyway, on ward 32, more active at APH because it is much further to the toilets etc than at home (10 paces to the bathroom at home, 40 yards or more at APH). Any risk, therefore, is lessened, not worsened.

Any drugs on the following list will not, of course, be taken if alternates are prescribed in hospital – assuming I actually get them which, last time, I often did not. Nor was I alone – it was a constant bone of contention on the bay, and I see no reason to assume that the rest of the ward was any better.

The only time I got the full raft of prescribed medication was to bring home with me on discharge. Such laxity simply is not acceptable. For example, the consultant prescribed dihydrocodeine, 60mg every 8 hours. The staff nurse told me that as drugs were issued only twice a day (and we’re back to the inadequate drugs rounds again), I could have only 2 doses, not three, per day. The consultant, when made aware of this, by me, was far from amused. Me too.

I apologise if this document seems confrontational, but on my last stay in APH (January 20-24, 20011), I experienced little but argument and antagonism, to a degree that was positively disgraceful and highly unprofessional, multiple times every day, at a time when I was seriously, and extremely painfully ill with pneumonia and empyema (and as it turned out, heart failure), and what I needed in addition to the correct medication, was peace and quiet – not confrontation and harassment. I have since been informed by APH administration that this should not have happened at all, and it is every patients’ right to take their own routine medication, as long as the ward staff know which, in my case, they did.

The purpose of this document is to try and ensure that none of this happens again. Ever.

Ronald W. Graves, April 1st 2011

* * * * * * * * * * * * * * * * * * * *

The following dosages (inhalers), are as determined by the Wirral Pulmonary Function Laboratory. The dose for Phyllocontin Continus was determined at Fazakerley Hospital.

As needed throughout the day.

Salbutamol inhaler 2 puffs (I also have a nebuliser)

Codeine linctus, 5ml

Scheduled:-

06.00

Phyllocontin Continus, 225mg x 2

Ramipril, 5mg, x 1

Co-codamol, 30/500, x 2

09.00

Serevent inhaler 2 puffs

Clenil Modulite inhaler 2 puffs (steroid)

Atrovent inhaler, 2 puffs

Furosemide, 40mg

12.00

Co-codamol, 30/500, x 2

13.00 (omitted if not really needed – this leaves me with a fall-back position in the event of a deterioration)

Serevent inhaler 2 puffs

Clenil Modulite inhaler 2 puffs

Atrovent inhaler, 2 puffs

17.00

Phyllocontin Continus, 225mg x 2

Omeprazole, 40mg x 2

Serevent inhaler 2 puffs

Clenil Modulite inhaler 2 puffs

Atrovent inhaler, 2 puffs

18.00

Co-codamol, 30/500, x 2

23.00

Co-codamol, 30/500, x 2

Amitryptilline 10mg, x 2 or 3 as required

Midnight (or on retiring).

Serevent inhaler 2 puffs

Clenil Modulite inhaler 2 puffs

Atrovent inhaler, 2 puffs

Codeine linctus if required

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10 thoughts on “Taking your own drugs in hospital is a right…

  1. It is really some terrible experiences you have had at that hospital….

    It is very hard to fight for your rights when you are so ill. I have also battled with hospital staff regarding medications and my right to take/bring my own, especially when they are totally incompetent regarding my diagnosis and treatment. So much that I’m avoiding hospitals and deny to be admitted unless I am unconscious or in an accident that necessitates immediate surgery or similar.

    • I’ve thought of that too, but then you have no control (and, of course, it might well be too late). Better, perhaps, to find out what the law is in Norway (if you don’t already know), and if it’s on your side, put together something along the lines of my declaration.

      I intend to put a whole batch of them in my hospital kit, and anyone involved in my treatment (excluding transients, like x-ray or ECG), gets a copy.

      I don’t expect the system to be infallible, but “Go and read that document I gave you – I’m not arguing with you!” should save an awful lot of time and aggravation. And if it doesn’t well, somebody might just get thumped!

      Ron.

  2. I have made a medical “curriculum vitae” and a folder of documents that my husband has promised to bring if I have to be admitted. It might help some I think.

    I have been quite angry with some of the Doctors in the hospital who didn’t even bother to read my file. Once I chased a Doctor on the night-shift who was totally clueless about my conditon(s) out of the room and told him not to come back unless he had read my file and patient records first. He never showed up again…

    So making a sort of declaration and your own information and demanding that the doctors read it might be the best solution.

    But I still want to stay away from the hospital if possible!

    • Hospitals are no place for sick people!

      My hospital file, which in this town goes back to 1955, disappeared in the mid eighties (and it was huge – monthly appointments, tests and x-rays, plus emergencies (I was a biker, we tend to get banged up), for 30 years – how they can lose something that size is beyond me). So they started a new one – then the old one reappeared after a couple of years. For a while, at appointments, there was no telling which one would be issued – nobody ever had the brains to combine them – and eventually the old one disappeared permanently. So, although my illness and disability date back to 1946, officially there was nothing wrong with me prior to about 1985 – which gives a completely wrong impression, not least because a crucial event – being struck by lightning in 1983, the source of many of my current problems, is now deemed not to have happened, as there is now no record. And yes – that was all the same hospital as the current fiasco.

      You couldn’t make it up.

      Ron

    • Ah – I’ll treasure that!

      Thing is, though, I’m just one person – hundreds of thousands pass through that hospital every year – how many have died through sheer incompetence?

      They had a go at killing me – seriously (you might have read this elsewhere). On my second night, when I was spending the days taking diuretics to try and reduce the fluid in my lungs, some lunatic connected me to what would have been 2 litres of i-v saline (connected via the cannula than had been inserted in A&E, so I didn’t notice). By the time I did notice, after over half a litre had gone in, and my breathing was severely compromised. If I’d not woken up, and they’d gone ahead with the full 2 litres, I strongly suspect I’d be a “Died from pulmonary oedema in his sleep” entry in the coroner’s records.

      Ron.

  3. It’s so surreal that being in a hospital can actually kill you!!

    I know several ME-patients who have actually escaped from the hospital, because the “treatment” and lack of understanding regarding the need for special care… fearing from their life…

    If you want to read, this post I made is about the problems of being in the hospital, via Google Translate:

    http://translate.google.com/translate?js=n&prev=_t&hl=en&
    ie=UTF-8&layout=2&eotf=1&sl=no&tl=en&u=http%3A%2F%2Fwww.serendipitycat.no%2F%3Fp%3D5755&act=url

    • Thanks Cathrine, I’ll have a look at that later. I’m just getting ready to go to the pub for lunch and quite possibly an absurd amount of beer – I feel I need a treat!

      I didn’t fear for my life in hospital – that came with hindsight – but I did fear for my sanity after 4 days and 5 nights almost totally without sleep. I was becoming seriously unravelled, which is why I negotiated an early discharge

      I’ve also written a post on the right to die – don’t worry, I’m not suicidal or depressed, nor am I planning to kill myself any time soon – as it’s something I suspect most chronically sick people contemplate at some point. I hope to publish it before I go out, if not, it’ll be later tonight or tomorrow morning.

      Take care.

      Ron.

  4. This is a really great idea, and I think I will adapt it and do something similar. My two routine prescriptions are fairly flexible (a sedative for sleep, which means I need it at bedtime, or a little before, and a fibromyalgia medication, which also causes a little drowsiness and because of work, I take it within a certain “window” rather than at an exact time). But I also have a ton of vitamins and supplements that I take. And the hospital I go to doesn’t usually consider these a “vital” part of routine drugs. But for me, they’re very important. And I’m sure that going from taking 5 different ‘vitamins’ to not taking them at all (last time I was in the hospital for a week) would result in more battle and frustration for my body. Also, should they actually provide them, I want them on my own time, not when it’s best for the nurse trying to get through morning rounds….I crush my vitamins and mix them in applesauce, and chase it all with a slice of white toast and lemon lime soda to make sure it doesn’t upset my stomach….first med rounds of the hospital I go to is between 0500 and 0630, a time when breakfast isn’t even served.
    And yes, the right to refuse care is absolutely a realistic idea. When I refused an evening dose of a steroid, I was scowled at for a couple hours…..but given the fact that the steroid was so upsetting to my stomach and I had just spent the last few hours expelling my stomach contents (and I was sure part of my stomach lining as well), I was willing to risk it (that particular nurse made it seem like I would die if I missed a single pill of the stepdown pack….where what really would have killed me was not getting any sleep and throwing up more – I stop breathing for long periods of time when I vomit…it’s scary).
    So I’ll be making sure my bases are covered next time it happens again, because I’m sure there will be a next time eventually. And I don’t want to go through the struggle again.
    Thank you for sharing this. It’s very helpful.

    • Hi Stacey,

      Beware of steroids – always insist on enteric-coated Prednisolone (Prednisone in the US), the default steroid in both countries. Uncoated tablets will cause gastric pain in many people and, if continued, can cause a gastric bleed. I refused uncoated tabs, and it took 3 days for the hospital to scare up some coated ones! Coated tabs are red (5mg) or brown (2.5mg), here in the UK. Not sure about the US.

      Ron.

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