21 September 2016

My laundry list of health conditions

Sam Barnett-Cormack, a patient who helped develop the multimorbidity guideline, blogs about what it's like to manage multiple long-term health conditions

Multimorbidity. I didn't know the word a few years ago, but it certainly fits me. I'm only 34 and I have a laundry list of long-term conditions: narcolepsy, bipolar disorder (type 2), migraine, eczema, asthma, mysterious balance problems, and irritable bowel syndrome.

My repeat prescription list has over 15 items on it. If you're thinking “that must make life complicated”, you're right.

It also makes my medical life complicated, with treatment for one thing getting in the way of another. And more medical appointments in a year than some people have in a decade.

It's hard to keep all that in sight at once, so I understand why doctors want to focus on one thing at a time. The problem is, when you have more than one thing affecting you, sometimes you can't understand any one of them if you don't look at all the others.

Doctors will think about whether a medicine they could give me for migraines will make my asthma worse, but they won't usually think about how my narcolepsy makes it harder to manage my eczema.

This is why it's important that those of us whose conditions affect each other, or who are seeing as many specialists as we've had mobile phones, have the opportunity to be seen as a whole person with all of our conditions by our doctors.

We can tell them what impact our conditions have on our lives, and how each complicates the others. We can tell them how we feel about our medicines. We can tell them if we struggle with appointments with different specialists, and we can tell them if there's anyone else we want involved in our care, like our family or a partner.

We can work with our doctor to produce a plan about how our care will be managed. And about how the various health professionals who are helping will keep each other updated, so we don't have to keep telling one doctor what another is doing. We can be seen as a whole person, not just one problem at a time, in and out in 10 minutes.

I know that when a doctor has really talked to me about my treatment options, about how they would affect me and my other conditions, and where we've made that decision together, well, that's made a real difference to me.

How much more of a difference will it make when we get to have a conversation like that, not about one treatment decision, but about all of our treatment, and how our conditions affect our lives?

And that’s what the new NICE guideline on multimorbidity aims to achieve – a real difference – and that’s why I chose to sit on the group the put the guideline together. It’s really important that your voice, a patient’s voice, is heard – particularly when your health and wellbeing is so complex.

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