patient experience

The Pandemic, Mental Health, and Me

sam — Fri, 25 Mar 2022 17:26:03 +0000

The Pandemic, Mental Health, and Me

sam Fri, 25/03/2022 - 17:26

I’m not going to add to the huge number of people who’ve commented on the impact of the Covid-19 pandemic, and the public health measures that resulted, on mental health. I don’t have data, and there are a lot of people more qualified to talk about it, as a general proposition, than I am.

I’m going to talk about something that only I am qualified to talk about, even if its value in learning about the more general situation is limited. I’m going to talk about me.

I have a severe and enduring mental health condition, albeit a more ‘mild’ sort than others (though perhaps better terms might be ‘subtle’, ‘easy to conceal’, or, as may become evident, ‘insidious’). Several years ago (I forget how long, though it was certainly after I completed my bachelor’s degree, and that was 2007), I was diagnosed with bipolar 2 disorder. Before that, I’d been diagnosed with depression, with various qualifiers – ‘recurrent’ being one of the most common.

For the benefit of those less familiar with mental health terminology, bipolar disorder is, in many ways, a spectrum condition. Also known as ‘bipolar affective disorder’, it is a mood disorder – as is depression; ‘affective’ in fact means ‘related to mood/emotion’. It is characterised by episodes informally referred to as ‘up’ and ‘down’. The ‘down’ episodes are depressive episodes, with the same sort of symptoms one would expect from depression, but being episodes they often end fairly spontaneously, and may start spontaneously as well as in reaction to circumstance. The ‘up’ episodes are more complicated, and less familiar to most people.

(I would also note that ‘depression’ and ‘depressed’ have become overused terms in everyday speech, and sometimes even in medical contexts, but that is a subject for another day.)

The ‘up’ episodes come in two forms, manic and hypomanic. The difference between mania and hypomania is partly one of degree, in that the features they have in common are more extreme in mania than in hypomania. There is also a qualitative difference, in that mania tends to have features that aren’t present in hypomania. For instance, mania can include psychotic features – beliefs at odds with the world in general, paranoid thoughts, hallucinations, to give the classic examples. However, the difference according to some authorities is primarily that mania tends to be such that one might consider hospitalisation, while hypomania doesn’t.

Here’s where the ‘2’ in ‘bipolar 2 disorder’ comes in. There are two diagnoses for bipolar disorder itself; bipolar 1 disorder, and bipolar 2 disorder. People with bipolar 1 disorder have had at least one episode of mania, while those with bipolar 2 disorder have had at least one episode of hypomania, but no mania. Both can also have ‘mixed features’ episodes, which are episodes of altered mood that have elements of both depression and hypomania/mania, as I’ll describe further shortly.

Diagnoses of bipolar 1 frequently occur during or following a first episode of mania, often while a person is hospitalised. Diagnoses of bipolar 2 are harder to make – hypomania is not always obvious, so it can just look like a person keeps getting depression and mostly recovering, over and over again – and even when they are made, they are permanently provisional. I could have a first episode of mania any time, and then my diagnosis would change. I really hope that doesn’t happen.

Mixed features episodes make things even more complicated. They’re basically just what they say on the tin – episodes where you have features of depression, and features of mania/hypomania. The easiest example to imagine is where you have the low mood, poor motivation and diminished self-worth that is common with depression, coupled with the agitation and racing thoughts of hypomania. Hypomania or mania can include something called grandiosity, a view of oneself as special, better than others, more capable than others. It can, but doesn’t always, lead to treating other people disdainfully. It can lead one to think that one has little in common with others, that you can only be understood by a few, special people.

One way I’ve seen this personally, though not in myself, is people who are genuinely exceptionally intelligent who develop the view that only people of similar intelligence – a group they think is much smaller than it really is – can really understand them (fairly common in grandiosity associated with narcissistic personality disorder, less so with hypomania), and that it is pointless or demeaning to interact with people who are less intelligent. In a mixed features episode, that can tie in to low mood by creating a sense of isolation, even though the isolation is brought on only by your own distorted view of yourself and the world.

Sometimes such episodes can even seem contradictory, with both diminished self-worth and an inflated sense of your own capabilities or specialness as found in grandiosity. That version I know well, because my hypomania often includes elements of grandiosity (though usually in a relatively pro-social way – I must use my special capabilities to benefit others, and without disdain for ‘less special’ people), and my depression almost always includes low self-worth (not the same thing as low self-esteem, but I’ll save the difference between the two for another post).

I don’t have solid empirical data about the circumstances that lead to diagnosis of bipolar 2, so I can’t say what is most common or least common, and what I say is, I’m sure, not exhaustive, but there are a few situations which seem to be common enough situations that make doctors look at it and potentially diagnose. The diagnosis can be very helpful, because there are treatments – pharmaceutical and otherwise – that are specific to bipolar, treating it as you would depression can be counterproductive, and even just knowing about the pattern and possibilities can make it easier to live your life. Some people are diagnosed after reading about it, seeing the description of hypomania, and feeling like it seems very familiar. Some might be having some form of analytical or cognitive therapy that leads to identifying potentially problematic ‘up’ patterns as well as ‘down’ patterns (which is what happened to me). Occasionally, a doctor or mental health professional might notice an unusual response to starting anti-depressant treatment, which is indicative of bipolar disorder, though that doesn’t seem to happen as much; if people were more on the lookout for this, I might have been diagnosed correctly at 16.

This unusual response is why treating bipolar as you would depression can be counterproductive – antidepressants tend to increase the frequency of episodes, often but not always reducing their duration, and particularly triggering hypomanic or manic episodes. It is not uncommon for a person with undiagnosed bipolar disorder to be started on antidepressants and to have what appears to be a remarkably quick and pronounced positive response to the treatment. That’s because a hypomanic episode has been triggered by starting the meds. Mood stabilisers – many of which were originally developed to treat other conditions, including anti-epileptic and antipsychotic medications – reduce the frequency and severity of episodes, and if a person tends to the depressive or has a more dysthymic (low mood) base state, sometimes antidepressants are used as well.

I was diagnosed with bipolar 2 years ago, but I wasn’t given mood stabilisers. I was even left on antidepressants. This wasn’t a result of poor care. It was, really, a good example of early shared decision making – I have a high number of comorbidities, and was managing quite well at the time with support from my wife (we weren’t married at the time, but I’m going to keep it simple and just call her my wife in any case). The other meds I was taking made adding another more risky. The psychiatrist and I discussed all of this and came to a decision together not to add in a mood stabiliser at the time. As to non-pharmaceutical treatment, I don’t know if any was on offer for community patients in my area at the time, but I wasn’t offered any.

So, there’s the key background. One more bit of pre-pandemic background I need to cover so you can understand what’s happened to me in the last couple of years. For a few years now I’ve had occasional exacerbations of my mental health that weren’t the ‘usual’ hypomanic or depressive episodes. They were mainly anxiety, and very debilitating, but usually restricted to one part of my life. I would be behind on some sort of commitment, usually voluntary, and the whole part of my life that that commitment was connected to would become a massive font of anxiety. It would eventually get better, and I’d catch up on the work or not. Mostly this has happened in relation to Quaker voluntary commitments, but I think that’s just because I’ve had so many of them.

So, we come to the pandemic. There were rumblings of something going on towards the end of 2019, and, gradually, confirmed cases were showing up everywhere. The potential seriousness of infection with SARS-CoV-2, the severity of the symptoms of Covid-19, became clearer and clearer. England went into ‘lockdown’ on the 23^rd of March 2020, a little more than two years ago. It seems much longer ago, in some ways, and much more recent in others. Due to treatment for other health conditions, I was put on the ‘shielding’ list (an overabundance of caution, in my opinion, but I wasn’t going to take chances my specialists said I shouldn’t). I barely left the flat for months, just for medical appointments. My wife, whose physical mobility is more limited than mine, had to do all errands out.

(The fact that she had to do so may have had some insidious negative impact in itself, of course - it was physically and psychologically challenging for her, so she had less ability to care for me. She was less able to notice that I was acting differently, and even when she did she was less able to do anything constructive about it. This is not her fault, however much she might feel guilt over it - the circumstances were forced upon us, and even if she weren’t also physically and mentally limited the extra burdens would have impacted her in a similar way, if less severely.)

Oddly enough, I don’t really feel like that bothered me. I certainly don’t think it was a trigger for the mental health decline that I’m about to describe. I consider myself what some call an ‘ambivert’, neither introvert or extravert, but rather one who enjoys company but can happily do without it – and in any case, I wasn’t totally isolated, I still had my wife, and I still had the internet. You see, I wasn’t actually having that much contact outside the home for a little while before the pandemic began.

This is partly why I don’t think the pandemic, lockdown or shielding was much of a trigger. I think, rather, that it provided a cover, a way of not noticing how things were going. We had moved home in the summer of 2019, and that reduced in-person contact a bit. I was rarely going to Quaker Meeting for Worship, having previously lived around the corner from the Meeting House and now living far enough that, for me, there was no choice but to get a bus (or a taxi, or a lift, though both of those are awkward with a rollator). So I didn’t go very often. My contact with other people in person had never been that frequent, but at that stage I was still volunteering at a local intercepted food club, and I still had in-person meetings for Quaker volunteer roles.

The intercepted food club stopped, of course. It has begun again now, and I hope to get involved again. I feel behind in some of my Quaker voluntary work, and that started my usual spiral, or so it seemed to me. I think, in hindsight, there had been some slippage in mental stability since the move in summer 2019. I don’t know why, but moving home is often described as one of the most stressful things people experience, so I guess that it would make sense.

Anyway, my anxiety around Quaker things grew. And then, unusually for me, it spread. It reached out into other parts of my life. My main paid work was just about the only thing unaffected. I stopped coping properly with personal administration, not responding to mail, not picking up voicemail, scared to answer the phone. I jumped at everything. My sleep became awful, which is something for someone with narcolepsy.

In the end I was convinced to reach out for help. My GP gave me some short-term anxiety meds, and urged me to contact the local IAPT service (‘Improving Access to Psychological Therapies’, a category of NHS service commissioned in all areas of England, though details differ, they provide basic psychological therapies like CBT, and sometimes more). I had an assessment call with the IAPT service, and they noted that I had a bipolar diagnosis but had never had any specific treatment. They offered a programme specifically for bipolar, and thought it might be appropriate, but it was only available to people currently under the care of community secondary care mental health services (known here, as in most areas of England, as the ‘community mental health team’, or CMHT), so they referred me across to the CMHT, mostly so they could put me on the list so I could have therapy from the IAPT service.

I had a call from the START team (they call themselves that, though it is redundant, START standing for ‘specialist triage and referral team’), who screen and triage CMHT referrals, sometimes diverting to other teams. They booked me in for an assessment call. Then they phoned back saying “uh, I just read your file, don’t worry about the assessment call, we’ll be recommending your referral go ahead”.

I do wonder what the file said…

I ended up under the care of the CMHT, was assigned a psychiatric nurse as care coordinator, saw a psychiatrist, was prescribed a mood stabiliser. While this was happening I was diagnosed with ADHD, following a long wait from referral to assessment (more on which is to come in a later post). I was offered talking treatments from both services at the same time, and you can’t be doing two at the same time from different services, so I had to choose, and did the ADHD psychoeducation course first – thinking that it might be helpful for the bipolar course. I’m now waiting for the bipolar course. The whole time I’ve also had support from my care coordinator in terms of strategies for coping with the anxiety.

Anyway, so far so rambling (but I hope informative). Now I want to look back, even if the journey isn’t complete (I’m still far from back at baseline-for-me levels of function), and see what I have learned – and so, what other people can learn from my difficult experience.

Firstly, bipolar disorder isn’t just about depressive and hypomanic/manic episodes. Anxiety is a big part of it for a lot of people, and, apparently, not always associated with obvious ‘up’ or ‘down’ moods. While the anxiety got me down, when I managed it by avoiding all the things that triggered it (which was not practical, as so much triggered it), I didn’t feel so bad. Until I thought about how restricted I was, anyway. This has just been a long, long period of heightened anxiety, that feeds on itself until I break the cycle. I’ve had depressive and hypomanic episodes during it, but they didn’t really affect the anxiety so much. Hypomanic episodes sometimes make it easier to face the anxiety, but sometimes make it harder. Depressive episodes can reduce the sharpness of the anxiety, along with other emotions, or can feed off the anxiety such that the anxiety becomes a focus of the negative feelings of depression.

Another major lesson is that circumstances can have much more complex impacts on mental health than just triggering or exacerbating problems. They can also hide the early signs. The restrictions of lockdown and shielding meant that my anxieties, that I’m sure were already building, weren’t obvious. I felt fine at home, didn’t even have to think about going out, and was managing to keep getting stuff done for a while. If it weren’t for the pandemic, I honestly believe that the crisis point might have come much sooner.

It’s the old fallacy, post hoc ergo propter hoc – after it, therefore because of it. It’s a form a reasoning that is not generally true – just because B follows A, it doesn’t mean A causes B. A less pretentious way of saying it, without resorting to dead languages the use of which is associated with social elites, is “correlation does not imply causation”, though even in that case ‘imply’ is used in a technical sense, not the everyday sense. In this case, just because my crisis happened during the pandemic, it doesn’t mean it was caused by it, or even necessarily exacerbated by it.

The most important lesson, though, is one that is perhaps most important for clinicians and commissioners. In my experience, people with long-term conditions that are variable, or have a relapsing-remitting course – including those with symptom ‘flares’ – are often left to judge for themselves when they should tell a doctor about a particularly bad time. There are plenty of physical conditions that fit this description, including many autoimmune conditions, fibromyalgia and ME/CFS. It’s also inherent in bipolar disorder, and a common pattern even with good pharmaceutical treatment in schizophrenia.

A patient, once they are used to the condition, is largely left to themselves, learns to manage things, and only even lets a doctor know about a flare or relapse if it is beyond what they feel able to manage themselves – if they think they need, or would benefit from, extra treatment (even if it isn’t actually available – though if that happens a lot they won’t bother telling doctors about even a bad flare). For physical conditions, this works reasonably well – a person who is mentally largely the same as ever, except perhaps more fatigued, and low in mood as a consequence of physical symptoms, but who is in a lot more pain, or loses full use of a part of their body, or so on, probably will realise that the situation has gotten worse, and go to a doctor about it. Well, maybe not ‘probably’ on going to the doctor, but there’s a decent chance. Most importantly, the condition itself doesn’t usually impact their ability to do so.

A person with a mental health condition of this sort, as in bipolar disorder or schizophrenia, among others, is a whole other matter. The very nature of the relapse or variation is such that we are less likely to realise there’s a problem, or less able to do something about it. If it weren’t for my wife, or indeed the people I was working with in volunteer roles (though they might be fobbed off more easily), I don’t know how long it would have taken me to seek help. I’m not sure if I ever would have done, until perhaps I did something that brought me to the attention of health services who would then wonder why I didn’t get help sooner.

I wouldn’t have gotten help sooner because I couldn’t face the prospect of contacting people to get help. I didn’t get help as soon as there was a problem because it wasn’t obvious. I got help when I did because my wife, and a few others, all but forced me to – and I’m glad they did.

Perhaps, as a matter of policy, it’s not such a good idea to wait for people with severe and enduring mental health conditions to let you know things are getting bad. Yet that is what happens in most cases. Even people with schizophrenia are often discharged by secondary mental healthcare services once they are relatively ‘stable’, have been on a set dose of medication for a while, not having had relapses and without positive or negative symptoms that are having a major impact on them. Most people I’ve known who had ongoing CMHT contact once they were ‘stable on medication’ were those for whom it had been decided the best course was to have medication by depot injection, for example due to poor compliance. They see someone every time they have their depot done, and there’s often a brief check – fairly superficially – to see if there’s any problems brewing.

I don’t know whether this policy is a result of principle – which I can see some arguments for – or a result of cost-saving. But perhaps, in terms of value for money (and maybe in terms of total costs, given the greater resources needed if a relapse isn’t caught early), it would be best not to discharge us. We should stay under CMHT care, with infrequent proactive contact, and still have an allocated care coordinator. When care is being more active, we develop relationships with our care coordinators, and usually positive ones. If we know we can get in touch with someone who knows us and our problems, that makes it less daunting to reach out when we start to have some greater difficulty.

Some time after my referral, for reasons not related to my own care, I learned that the START team, in their role as a single point of access (which was actually what they used to be called) actually accept referrals that don’t come from clinicians. Not only can people self-refer, but carers and relatives can ‘refer’ someone into the service. For those of us fortunate enough to have someone close to us who can spot when things are going downhill, this could be very useful, provided that the reaction leads to joined-up care making use of existing records, and especially provided that people actually know about it. My wife was never going to make contact with them, with or without my knowledge, when she didn’t even know it was possible. It could be made even easier, if it didn’t require a phone call – a simple web form would be ideal. It would be even better if she could do the same with the CMHT while I am under their care, so it doesn’t rely on me to tell them if things get worse again.

I don’t set healthcare policy, and maybe I’m not qualified to do so even if I had the opportunity. I think I am qualified to comment on it, though, and I do think that people who do set policy should have a good think about this. The disruption to a person’s life when they have a major crisis – suicide attempts, breakthrough active psychosis, acute mania, debilitating anxiety – is huge. The disruption to their loved ones is huge. The disruption to their neighbours or colleagues can be pretty huge. And the work by health services to bring things back under control are pretty huge. An ounce of prevention is worth a pound of cure, as the saying goes (some attribute this to Benjamin Franklin, but I’m sure the sentiment predates him by a long way). Perhaps more proactive prevention would lead to better outcomes without the costs being disproportionate. Perhaps mental health teams should be adequately resourced and managed to help us, people with severe and enduring mental health conditions, to need less care.

That’s not my call, but that’s what I think.

Shared Decision Making – What is it, and Why should I care?

sam — Thu, 24 Mar 2022 08:13:01 +0000

Shared Decision Making – What is it, and Why should I care?

sam Thu, 24/03/2022 - 08:13

Shared decision making (SDM) is a bit of a hot topic in medical circles. Well, it should be, but it mostly seems to be a hot topic among people who are researching clinician-patient interactions and people who have ‘caught the bug’ for it and are trying to drive change. It’s making a fair bit of headway here in Britain, with England’s National Institute for Health and Care Excellence (NICE) publishing a guideline on Shared Decision Making last summer calling for the “embedding of shared decision making across every organisation or system regardless of its size”. With increasing patient-facing roles for pharmacists, the European Association of Hospital Pharmacists Congress has a keynote today about it; I’m co-presenting, though couldn’t make it to Vienna, so my contribution was recorded as video used during the presentation.

The NICE Guideline is quite strongly put, with several ‘do’ recommendations (as opposed to ‘consider’ ones). This doesn’t mean these things will happen; NHS healthcare providers in England are only required to have regard to NICE Guidance, though the regulator and funding bodies will use them (and accompanying Quality Standards) as benchmarks. The guideline is clear that a senior leader should be accountable for embedding SDM, that there should be one or more organisation-wide ‘service user champions’ (“recruited from people who use services”, and it’s worrying that they had to make that explicit), one or more senior health professionals working as ‘professional champions’, and that organisations should consider appointing a patient director (“from a service user background”) to work with the senior leader, the professional and service user ‘champions’ being there to support both the patient director (if there is one) and the senior leader.

(If any organisation in my area is in the market for such a service user director or champion, I could be available, by the way)

There’s a lot of more bureaucratic stuff about implementation, supporting and training staff, and even what sort of posters should be up in areas where patients/service users spend time. It does go on to make some very specific points about how to ‘do’ shared decision making, focussed on a few areas – discussions, decision aids, involvement of family, friends, carers, advocates etc, the need to support people who have more difficulty with SDM or don’t have support from family etc, the importance of clear communication about risks and benefits, that sort of thing. It’s all very good, as far as it goes, though what I consider the most important thing to know about SDM is only really there by implication (more on which below), and it leaves a lot of detail up to interpretation.

That’s understandable, given NICE Guidelines aren’t there to tell clinicians how to be a clinician, but SDM is still a new way of doing things, and there are a lot of doctors and other health professionals who won’t know much about it, and won’t have confidence in doing it. The first wave of ‘involving patients in making decisions about their care’ resulted in a lot of doctors just asking patients what they thought the doctor should do, sometimes having provided options, sometimes not. I have to say, that’s not very helpful for the vast majority of patients, even knowledgeable ones like me. Before that, and still with some doctors, especially some specialisms, the approach is more paternalistic – the doctor knows best, tell the doctor things, they do tests, they tell you what is going to happen. Of course, patient consent is still important in that scenario, but doctors following that model tend to assume the patient will consent. The way some clinical guidelines are presented – particularly those with ‘pathways’ for care – can reinforce this approach, but rather than being driven by a paternalistic attitude it is driven by the algorithmic nature of guidance.

Shared decision making is different – it is based on the idea of the patient, the doctor (or other clinician, or several clinicians), and other people the patient wants involved, sharing information with one another, things going both ways, and making a decision together. While that principle can be discerned reading the Guideline as a whole, I’m not sure it is clearly stated. There are formulas for how to go about doing SDM, which if read correctly will lead to this happening, but it isn’t clearly stated – and it should be. The paternalistic model involves the patient telling the doctor things, and the doctor making decisions; patient-led decision making (as I shall call it, not being sure if there is a technical term) involves the doctor telling the patient what their test results mean, what their symptoms point to, what the implications of their diagnosis are, what the options are for treatment, what risks are involved – and the patient making decisions. Judging by some American medical YouTubers, the patient-led model is dominant and considered ‘best’ in America.

That isn’t shared decision making. You don’t even get shared decision making by combining elements of the two approaches, though you can see elements of both in well-done SDM. Shared decision making takes more time than either approach, and a level of empathy that one would hope was normal among clinicians (though experience suggests otherwise). Shared decision making is about back-and-forth, about clinicians understanding a patient’s life in ways they might not otherwise need, about high quality communication and making sure patients understand risks and benefits to the best of their ability.

Because of this dynamic, because of the wide scope of information exchanged, it allows patients who aren’t willing or able to really look at options in detail to still end up with a decision that is likely to match what they would choose if they did so. It allows curious patients who want to know as much as possible to learn it. It allows clinicians to incorporate patient priorities that they might not even realise were there. It can even optimise the involvement of patients in decision-making where they aren’t legally capable of making a decision.

I’ll be writing more in the near future about shared decision making, different aspects of the process and the great opportunities it presents for improved outcomes – especially subjective outcomes, patients getting what they want rather than what a policy-maker has decided is the best outcome. There’s far too much to it to do justice in one blog post, without making it so long that you would give up reading. What I hope to do is help clinicians and patients understand what shared decision making is, why it’s good, and how to do it properly, based on how patients experience such interactions – not from the clinical perspective. The ‘how’ is obviously more aimed at clinicians, but if patients understand as well then they will be more able to participate fully. I’ll just finish with a couple of examples where properly done SDM can lead to better outcomes for patients.

To take an obvious, and very emotive case, you may have a patient who is likely (or even definitely) going to die of some condition, and sooner (say in the order of years) rather than later. There may be some important life event coming up that they want to participate in fully, which might mean that their priorities lead to a path of treatment that doesn’t maximise the quantity of time they have left. Instead, they would be focused on quality of life, not now, not over the whole remaining time of their life, but over some short period of time in the future.

Pain management is always a difficult proposition, but it’s even harder for people who particularly value clarity of thought – for example, those whose work or recreational activities are intellectually-focused. Pain isn’t great for clarity of thought, but nor are a lot of pain relieving medications, whether they be opioids or gabapentinoids, among many others. Rather than pain management being about minimising both pain and the risks related to pain relief, such as tolerance, dependence, misuse, or side-effects in general, it becomes about balancing pain and pain relief to optimise cognitive function, an entirely different proposition.

As a final example for today, I’ll use myself. My wife and I are mutual carers, both disabled, both with long-term health conditions that affect us day-to-day. We each have limitations, some different, some shared. Together, we muddle through pretty well – alone, we would struggle massively, and it would be hard for someone else to substitute and provide a lot of the care. That means that both of us would very much rather avoid any sort of treatment that would prevent us caring for the other; elective surgery is something we would avoid more than your average person, and where we need a procedure that could be done with sedation or general anaesthetic, or could be done with only local anaesthetic, we’re usually going to choose the local. If our doctors, and other health professionals, know about our mutual caring role, and the implications of it, they can start off discussions from the basis of avoiding inpatient stays and similar. If they don’t, and if a good process of shared decision making isn’t followed, they may be quite confused (or draw incorrect conclusions) from the choices we end up making.

Life Juggling Tablets

sam — Tue, 04 Jul 2017 17:52:59 +0000

Life Juggling Tablets

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.

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