The Polypharmacy Challenge Blog
Polypharmacy perspectives: the polypharmacy challenge for patients
Our second guest blog post is from Jennifer Bostock, with a polypharmacy story from the patient perspective.
"Why sometimes having too many drugs is not enough and why having enough is sometimes too many"
This is a quote from my friend Pat. She is 80 years old and lives at the sunny seaside where I live in Kent. She lives alone, apart from an array of not so exotic animals. She is jolly and she enjoys life. There is nothing Pat would not do for me or for anyone else; she’s a truly kind soul and would never ever bother the doctor unless it was absolutely necessary. For the last ten years, Pat cared for her husband who had motor neurone disease. She watched as he became more and more like the child she never had and less and less like the man she married. It was exhausting. And it came at a price to Pat’s own health.
Since her husband’s death, Pat has had a catalogue of her own medical matters to deal with: trips to hospital, stays in hospital and a calendar now filled with what seems to be never ending appointments to one NHS facility or another. For someone who didn’t visit the doctor for ten years (other than to take her husband), this new found ‘sick status’ has come as a shock to Pat. She remembers a time before her husband’s illness when she used to get up, get washed, get dressed, and go out for the day, all in about ten minutes. It now takes her more than ten minutes to count out her daily pills. Last time she looked she had 14 different pills to take.
Apart from the endless doctors’ appointments and the tediousness of her aging body, what really bothers Pat is the medication she’s been given. Not content with telling her what she ‘can’t do’ - smoke, drink and eat all the things she loves - her doctors also insist that she fills her once chocolate-filled stomach with endless tablets. They taste horrid, are difficult to swallow, and she’s pretty sure that at best they do nothing and at worse they make her feel lousy. So what’s the point of them all?
Periodically she’ll quiz her doctor about the need for them all. But the appointment is short. There are other things to talk about. And by the time she gets home she’s forgotten which ones, if any, are important or indeed what most of them are for. She’s tried various methods to simplify her pill taking; putting them in labelled egg cups, keeping them in their boxes, and decanting them into saucers. But it’s all so time consuming and in the absence of feeling better, or of a clear reason for why she has been given all these pills, Pat often does not take many of them. Of course admitting this to her doctor is quite another story.
Pat has realised over her years, both caring for her husband and herself, that ‘good enough’ is all she can expect, both from herself and from her doctors. And she’s fine with that. But she’s worried about the money that the NHS is wasting on her pills especially as she doesn’t take half of them. She sees stories on the news about children dying because the NHS can’t afford drugs for them and she can’t understand why she’s being given all these pills that as far as she knows don’t do any good. Pat thinks what would really help would be to have someone, anyone, come with her to her medical appointments, sit at the back and just be another pair of eyes. Someone who’ll listen to what the doctor says and what she says and then go away and work out if all this giving out of pills really is worth it. It would also be good if her doctor could see what it’s actually like at home for her trying to manage all these drugs whilst also trying to live a life. Pat thinks it would be nice to have something that she could take with her like a checklist of questions to ask the doctor when discussing her medication. Or a kind of diary so she and her doctor could check if she’s taking the pills she needs and why. But in the meantime, Pat muddles along, rattling with pills some days when she decides and remembers to take them. And not rattling at all on others. She’s decided that what it all comes down to is that when she does feel really unwell no matter how many pills she has she still feels ill, and when she feels fine she really shouldn’t be taking any. In other words, sometimes having too many drugs is not enough and having enough is sometimes too many.
About the Author
Jennifer is lay chair of APOLLO-MM Expert Advisory Group. She has been working in Research Ethics and Patient and Public Involvement for over 10 years. Her interest in polypharmacy comes from caring for her elderly parents and as a patient with a complex genetic condition. You can read more about Jennifer here.