medical

The Importance of Patient Involvement – and How to Get It Right

sam — Thu, 21 Jun 2018 15:15:20 +0000

The Importance of Patient Involvement – and How to Get It Right

sam Thu, 21/06/2018 - 15:15

It might seem strange that I feel the need to write about this now, when it's such a trendy idea in medicine in this country, but just because something is trendy doesn't mean it's being done for the right reasons – or in the right way.

Patient involvement (or service user involvement, if you prefer), like patient centred care (or person centred care), is something people find easy to agree with. At least, they agree with the principle. Of course patients should be at the centre of their own care; care is about them, and should be focussed on them and their needs. Of course patients should be involved in planning, in policy, even in ongoing management; how else can we get a clear idea of patients' needs and how they will be affected? There are ways and ways of doing these things, and different reasons for doing them, that affect how much impact they can have. Sometimes the choice of terms, as with the alternatives mentioned above, reflect differences in attitude and approach; sometimes they reflect an intent to create a certain impression, rather than reflect a real difference.

I've known people who served as patient representatives on their local Clinical Commissioning Group. I've served on NICE committees, and been involved in other projects, with the brief of representing the patient point-of-view. I know other people involved in patient involvement and patient advocacy in any number of ways, as well as people involved in representing the views and needs of disabled people in various contexts. It's a complex area that can be done well, and can be done badly. I'm going to explain why it's important to be done right, and some of the things to do (and to avoid) to get it right.

Everyone interfaces with the health service somewhere, at some points in their life. It is unavoidable, though some people through luck or obstinacy manage to avoid it a lot of the time. Some of us are less lucky, and have to engage with it quite often, in several places. Many people engage with some specific part of the health service with which few have a reason to engage; there are many different such parts. It is these sorts of people that can give some of the best, most important insights. You can't rely on clinical or administrative staff to have experienced any particular service from a patient's perspective – though they will all have had some contact from that angle – and you certainly can't rely on them to have engaged about particular things, or with particular less-used services. More importantly, even if they have had that experience, the fact they have seen things from the other side of the fence so much more means that their experience of being a patient will be coloured by their experience of running or providing services.

A good person to be involved as a patient representative will have, or can readily gain, a reasonable understanding of the provider's perspective, but their engagement will stay rooted in their experience of a patient – and the experiences of others that they can draw in to supplement their own. They may learn to speak the clinicians' language, but they won't lose their understanding of how patients see things. Patient involvement is inherently a form a patient advocacy – patients usually being uniquely placed to advocate for patients – where the “involved” patient is advocating for the interests and needs of all patients. Without that, we find ourselves designing and managing services in a paternalistic, “doctor knows best” way. It seems that the consensus is coming around to agreeing that such paternalism is a bad thing.

Patient advocacy and patient involvement usually go wrong in one of two main ways, of which there are many variations. Either the wrong person is involved, or it's not taken seriously. Representing patient interests doesn't just require one to have experience of being a patient. It requires an analytical mind, communication skills, and a strong learning capacity, because you are going to have to learn to understand clinical staff when they speak their own language. It requires empathy and sympathy, to be able to represent the interests of patients other than yourself. It requires time, and it requires commitment.

Getting the right person can be helped by doing another thing that demonstrates that you are taking it seriously – paying people appropriately. I once spoke to a patient representative on a CCG; they had trouble persuading them to pay travel costs, never mind pay them for their time. The other CCG board members are generally there in relation to a job they're being paid for already. The patient representatives aren't. So often we, as patients, are asked to get involved but offered nothing in return except the hope of better services. Sometimes there's a nominal payment, or some High Street Vouchers. The better-run research projects, NICE committees, and some others pay service user/patient members a reasonable fee, but too often these are the exception rather than the rule. Sometimes you can get a fee for speaking at a conference, but sometimes organisers seem to expect patients to be willing to give up a whole day, if not more, to come and talk to relatively well-paid clinicians – and get nothing back for it but out-of-pocket expenses. If you are taking patient perspectives seriously, you need to pay for it. When we're involved, it's not just the time you have us in front of you and talking that we're devoting to it. It takes time, it takes planning, it takes work. The skills that make a good patient representative are skills that are useful in a lot of other lines of work. While some of us, due to the very health conditions we want to improve care for, find the conventional workplace difficult, that doesn't mean those skills should be valued less than they would be in a regular job. If you want to make use of our skills, our abilities, the expertise we have gained through lived experience, you need to pay for it.

Of course, conference organisers aren't used to the idea that speakers need to be paid. Speaking at a conference, for a professional, is in some senses part of the job they're already doing – especially for academics – and is significant kudos. The same is not true for the vast majority of patient experts. Sometimes my speaking engagements have paid, and sometimes they haven't. I don't like this, because it may well not be sustainable for me; I need to make a living. However, a certain amount of this seems to be necessary if I want to be able to do good. I shouldn't be in that position.

The other big thing that can go wrong with patient involvement is that it becomes a matter of box-ticking. You have patients/service users involved, and you've ticked that box… but you don't actually listen to what they have to say. Oh, you compile reports, you mention their input, you're aware of what we have to say – but you don't actually allow it to influence your activities, policies or decisions. A particularly pernicious form of this is where you restrict patient involvement to a special “patient involvement group”, who meet separately from other stakeholders, and all their input is digested by the staff whose job it is to interface with them. Patient involvement that is direct, at the highest levels, is much harder to ignore.

The peril of box-ticking also applies to choice of language. There's a very meaningful reason to prefer “service-user involvement” and “person-centred care”, but that reason is not satisfied just by using those different terms. What matters much more than the words you use is the attitude behind them, and it's better to have the attitude and not the on-message language than vice versa.

That attitude is one of seeing patients as people, not as subjects. Co-creation and co-management of care on the individual level. We are service-users rather than patients because what matters for our involvement is our use of the service, not just the experience of illness (though the experience of illness should not be neglected). As far as I'm concerned, you can call it what you like if you think of it in these terms, and no amount of rote use of “better” language will magically change the way people think (though there is evidence that it can help, in general).

The key point about both ideas is to break down the “them and us” view of medical professionals and patients, and instead see us as partners. A good doctor is working with their patients, not on their patients. Decisions are co-produced, not dictated. When it comes to organisational or policy-related patient involvement, we are not just consulted but actually involved in management, in policy formulation, and in evaluating the delivery.

Medicine has come a long way in breaking down paternalism and frankly dehumanising attitudes to patients. To keep this up, and make more of the progress we still need to make, keeping us involved is vital, and it's vital to do it right.

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.

medical

The Importance of Patient Involvement – and How to Get It Right

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Life Juggling Tablets

The struggles of managing meds in multimorbidity

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