Bureaucracy is disabling me.

Ok, bear with me, this could be a bit whiny and it’s probably going to be longer than normal.

I take meds four times a day; morning, lunch, 4pm and 7pm including controlled drugs at morning and 7pm and liquid morphine as and when I need it.

About a month ago, my care agency told me they absolutely cannot keep doing my meds. By which I mean, transferring them from the weekly blister pack which I can’t get into to the little daily meds box which I can open. This also means I only have to carry one day at a time each time I leave the home. And we can also add in the controlled drugs which can’t go in the blister pack. All seems sensible to me. Except transferring meds, or leaving them for me to take later, is secondary dispensing and that’s not allowed.

So, being a problem solver, I started trying to figure out how we fix this. And I’ve thought and thought and there are no sensible options. I’ve been shown a telecare medication dispenser. Which to be fair, would give me (some of) the medication without carers having to get involved. It couldn’t dispense the controlled drugs or the as and when morphine.

It is also huge.

And I would have to take the whole thing with me if I wanted to leave the house over meds time (you know, to do something wild like go to work).

As I can’t get it out my bag I will still need help taking my meds.

When it’s time, it’ll beep away until I take the tablets. Which is great if I happen to be in a meeting – sorry, don’t mind the beeping, could someone grab the giant meds thing out my bag as I can’t do it myself – nothing like having a giant sign on your head saying disabled.

I’ll also have to carry about a week’s worth of meds if I go out which will be great for thieves – nice stash of tramadol there…

It will need filling weekly which means I need to be home at the same time each week so the pharmacy (there’s only one which will fill it) can drop a filled box off and take away the old box. But that’s ok because I’m probably going to be tied to my house by the meds box anyway…

Plus the controlled drugs can’t go in it.  That’s ok in the morning as my carers are with me but they aren’t currently at 7pm (they do 5.30-6.30 as that’s when I have my tea, any later and I’m too tired and can’t be bothered and anorexia says nah, not tonight).  And I’ve just heard from the social worker that they wouldn’t extend my evening call.  So I would have to have 6-7 instead meaning I will struggle with my tea and I’ll be going to bed straight after I’ve eaten (I’m in bed by 7.30 at the latest).

And there’s the as and when liquid…Even if we can replace it with a tablet, I still won’t be able to get it out of the packaging. And I take it any time of the day or night. 3am is not unheard of… In fact the middle of the night and when I’m at work are the most common times for me to take it…  One of the ‘solutions’ social services suggested was that I get my team to dispense my medication.  They do at the moment because we haven’t got a choice but it’s not appropriate and I can’t rely on them being there or me being with them at the right time (you know, meetings and such get in the way).

And social services keep saying it’s not their responsibility… it’s health’s…

I’m off to see my GP with my care manager on Tuesday… I have a sinking feeling they will tell me it’s not their responsibility, it’s health’s…

Wish me luck… the alternative is i have to be at home 8am,12pm,4pm and 7pm unfailingly and having my evening meal screwed up.

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9 thoughts on “Bureaucracy is disabling me.”

  1. Hi, new follower here. This is all faintly ridiculous, except that it causes you so much harm. I’m sending good thoughts that someone in this loop of “it’s not my job” folks will step up and offer a reasonable solution. I hate that you are essentially being criminalized for having an illness. I fervently wish you the best.

    1. Thanks. I keep coming up against utterly ridiculous barriers, this being the latest. Before my pain was this bad, I really hadn’t appreciated just how much bureaucracy there was around being ill or disabled and how little common sense there is… as an example I can only get a one bed flat through the council until I get overnight care but I can’t get overnight care until I have somewhere suitable for them to sleep… In many ways, that’s why I blog about it – I’m not sure where you live but the UK government is saying everyone, including people who are ill or disabled, should be in work. Without any appreciation of the barriers that the system they run puts up. I have a feeling there might be a ‘Being disabled is a full time job’ part 2 post coming soon (https://unlockingwords.wordpress.com/2015/11/15/being-disabled-is-a-full-time-job/)

      1. I live in the US, where assistance for folks with chronic illness varies depending on what state you’re in – we don’t have a national health service. I would imagine, though, that the issues you face would be similar here – and indeed, in any country where any drugs are criminalized for any reason. Just as a matter of curiosity, I’d be very interested to know what countries like Portugal and the Netherlands do in situations like yours. Not that this helps you at all!!! Again, I wish you the very best.

  2. It’s so frustrating isn’t it? I’m in the UK and the help is so ridged & they don’t expect you to be working. I’m usually met with either surprise having assumed I didn’t work, or that lovely patronising “aren’t you brave”.
    I hope you get a decent compromise xx

    1. Yep, I’ve had strangers congratulate me for working… Eugh… Managed to find a way round the box of doom by changing meds, dosages etc so only have to take them morning and night when my carers are there. But unsurprisingly the gp had no idea what to do about the as needed morphine….

      1. Could you get someone to put it into a set of Calpol / calprofen syringes & cover the ends in cling film?
        Then you could self administer without that flipping childproof lid? (Note the word I use when I’m trying to open it!)

      2. I’m assuming you normally use the word fantastic? 😛 yes, I’m working on some ways round with a neighbour as she’d probably end up being the person to dispense it. Which is OK now but I’m also desperately waiting to move into somewhere without a step and where I can wash… Which could end up being anywhere in york so less convenient for my helpful neighbour… It’s so unnecessarily complicated… Sigh

  3. I’m reliant on someone putting my temporary ramp up if I want to leave or enter the house. It’s a bit like being a teenager again where you have to ask to go out & you have to tell everyone where you’re going “just in case”. It’s. … fantastic?

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