Life Juggling Tablets

sam — Tue, 04 Jul 2017 17:52:59 +0000

sam Tue, 04/07/2017 - 17:52

The struggles of managing meds in multimorbidity

When I was working with the National Clinical Guideline Centre on the NICE Clinical Guideline on multimorbidity, I learned how much of a growing “problem” this is for healthcare, not just in the UK but across the global economic north.

Multimorbidity is just what it sounds like – having multiple illnesses. You have to remember that “illness” here has to be considered broadly, in the sense that things other than actual diseases might count, and slightly narrowly, in that we're not necessarily talking about someone with one long-term condition who then has 'flu (though depending on the long-term condition, that can be something to worry about). A person might have depression along with a chronic pain syndrome like fibromyalgia, or might have diabetes, heart disease and a learning disability.

The increasing numbers of people living with multiple long-term conditions is partly driven by the ageing population, and by increasing medicalisation of things that might have been considered normal variation, but that certainly isn't all of it. It's certainly true that the population is ageing, and that modern healthcare means most people over a certain age are living with multiple conditions, usually being given medication for them. It's also certainly true that more conditions have been identified, either as well-defined medical disorders or as syndromes of undetermined aetiology, and more conditions are more-or-less effectively treated. What I think is also important in this is that more people are surviving things that used to kill them – more conditions have become life-long and chronic that used to be terminal, or at least shorten lives by a lot. Deaths from asthma used to be a lot higher than they are now, though you have to go back a few generations. Effective mental health treatment reduces deaths from suicide and misadventure, though current struggles to provide such care means that isn't doing as much as it might. Similar stories can be told about lots of different conditions, and it means that people with these conditions are living long enough to develop more conditions.

So now we have people like me – a motley collection of diagnoses, without advanced age. This all serves as a protracted introduction to what I actually want to tell you about – taking lots of drugs.

I'm a fairly extreme case, though there are people with much more complex and unforgiving regimens. 8 times a day, I take one or more regular medications in tablet form – 6 of them. Some have to be taken a set time before food, some “with or after” food, and most (thankfully) have no food requirements at all. Then there's the tablets I take “as needed”, mostly for migraines. Then there's inhalers – a combined preventer/protector (steroid and long-acting β₂ agonist), twice a day, and a reliever when needed. And my topical treatments – steroid creams, emollients and antiseptic creams. I have two straight emollients, one antiseptic/emollient, one antiseptic that isn't so emollient, and one emollient with menthol (it's actually really good at calming some sorts of itch). Oh, and some funky-smelling dressings for when eczema gets really bad on my lower legs and arms (ichthammol is effective stuff, but boy does it stink).

It can get hard to keep track of. Dosette boxes mean I can tell whether or not I've taken most of my regular tablets, but as I only want to have one set of boxes, it won't allow me to keep track of everything. For my before-food tablets (mebeverine), I just try to remember to take them before meals. If I forget them, then they don't do any good taken later, so I guess it works out okay. But without the dosette boxes, I would have a lot of trouble knowing whether or not I'd taken the other tablets. With some of them, you don't want to accidentally double-dose – but the consequences of missing doses can be a real problem as well. With my narcolepsy meds, if I forget the afternoon dose and don't notice for a couple of hours, I can't take it; I live with being dozy all afternoon in order to actually sleep properly at night.

With all that in a steady-state, though, I manage. With the right strategies, and support from my long-suffering partner, it mostly works out. The odd hiccup is unavoidable, but usually it's not disastrous. It gets a lot more complicated, though, when the routine is disrupted. Sometimes the disruption is because of me, because of what I'm doing – I'm travelling, I'm eating at odd times, I'm keeping strange hours. Then we can work it out in advance and usually figure something out, though I'm not always sure my doctors would approve.

Sometimes, though, the disruption is medical. My life got thrown upside down once by a drug interaction causing serotonin syndrome. That can be life-threatening, though fortunately mine didn't get that bad. It was pretty distressing at the time, though, though now I can laugh about the out-of-hours doctors repeatedly asking “are you sure you haven't been taking any amphetamines?” I think they were surprised by the answer “not since I had it prescribed a few years ago”, but then familiarity with narcolepsy treatment isn't as good as you'd hope. That meant a lot of changes to medication, which meant getting used to things all over again, and it was a couple of years before everything was properly settled again.

Disruptions are a lot more frequent than that, though. Everyone gets an infection from time to time, especially people with eczema, and treatment of them is more enthusiastic when you're on immunosuppressants, so I don't usually go too long between courses of antibiotics. Some of them aren't too disruptive, I just have to remember to take them. Others, though, especially the most popular one for skin infections, have food-related instructions – and they never match any of my regular meds. Flucloxacillin, commonly used as a first-line antibiotic for skin infections, has awkward instructions that I'm still not sure I've been interpreting correctly. “Take on an empty stomach. This means two hours after eating or one hour before eating.” Does that mean that I can eat immediately after taking it, if I hadn't eaten for two hours before? And that I can take it immediately after eating, as long as I don't eat for an hour after? I usually aim for the first, because there's another wrinkle the leaflet doesn't tell you about – sometimes, after taking it, you can get horrible taste burps. I mean, not nauseating, but very unpleasant, so I like to eat something with good, strong flavour soon after taking it. If I do that, there's other flavours in the burps, which means I have a much nicer time of it.

And, of course, there's managing prescriptions. All of my regular treatments, including “as needed” ones, are on repeat prescription, except the ones I'm expected by buy over the counter. It used to be that they were all prescribed in the units that manufacturers package them in – some multiples of 28, some of 30, and some in boxes of 100. Now all that can be are prescribed as 28 days worth, which makes my life easier – though I'm not sure my pharmacist is a fan, with all the partial boxes he's left with. My creams and ointments, though, and the “as needed” medications, I don't consume at a consistent rate, and my regular inhaler holds enough for 30 days. So I need to know when I should be ordering what, and spend too much of my life in the pharmacy, either getting my prescriptions (and my partner's) filled, or getting the medicines doctors have told us to use but won't prescribe, or getting the odds and ends that everyone needs sometimes – painkillers, decongestants, whatever.

This is just an idea about what managing all of this is like for one person – me. There are far more people with complicated medical lives, and while some of it will be familiar to a lot of them, there's also a lot of difference out there. I would urge medical professionals that work with people like me to really think about this, and get to know what it's like for your patients. That's the only way you'll make their lives easier, at least when it comes to medication. And for fellow people who are complicated, difficult patients, don't be backward about letting your doctors and other health professionals know about these things. They aren't psychic, and at the moment, in the NHS, they're probably pretty over-worked.

Patients and professionals need to work together, both in developing and building the systems of healthcare, and in every individual healthcare interaction. That's how we'll make life better for everyone.

medication

Life Juggling Tablets

The struggles of managing meds in multimorbidity

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