I used to think that patients were generally sick, but if someone asks me how I am, I usually say, “really good”, and only rarely reply that I am under the weather. So, I don’t consider myself as sick — well mostly. In the past I considered myself as a healthy person who occasionally succumbed to a viral infection or headache etc. That was until I was diagnosed with adult-onset asthma. But being compliant with my inhaler regimen, I found myself reverting to the healthy mindset once again. That was over twenty years ago and suffice to say that I added a few more chronic illnesses to that single diagnosis in the interim. So, while I am definitely a patient, I also live a very full life involving family, volunteering, socialising and hobbies.
So where do I see my patient piece? The daily reminder is there every morning and evening when I take my medication, and there is a little subconscious anxiety about making sure not to forget it. Then the mindset is reinforced when I visit my GP, my consultants, the pharmacy, go for blood tests and scans. It is a very regular experience now.
And so, to medication. So far, I am on eight tablets daily plus an inhaler, a nasal spray and then my HRT, a couple of times weekly. And I have a separate list of medications to take in the event of an exacerbation of my asthma. Definitely polypharmacy, but I’m far from the worst case. The good news is that I’m able to interact with my prescribers pretty well as an informed colleague, which I have learned is not always the experience of patients; and I’m happy to say that what I’m prescribed is appropriate for me at this time.
This good news continues into my experience with my community pharmacist as they have been diligent in asking me appropriate questions as well as highlighting salient points; and from this I do know that they have taken my prescription as a whole into consideration, not just each item individually. Happy days!
The final part of medication management is my own piece, and I suppose now is a good time to casually mention that I am a retired hospital pharmacist. I will also admit that certain aspects of being a patient didn’t fully register with me during my working life. My role as a Chief Pharmacist was primarily management rather than in a patient-facing role, but I worked on the principle that the needs of the patient always came first. ‘Putting the patient at the centre’ was the mantra of our department and it served both myself and the staff I worked with really well, especially when difficult decisions presented.
Bearing that in mind, you would think that managing my own medication would be a breeze. Confession time — I have found it more difficult than I would have anticipated, but I think I’ve got it reasonably well sorted at this point in time. And I’m wondering that if the situation can be difficult for me, then it’s reasonable to assume that others may have even more difficulty than I do.
Firstly, I find it unsettling to leave my GP with no prescription; I simply have to trust that it transfers as discussed via healthmail to my pharmacy. If there is a query, it is so much easier to spot it before I leave my GP’s surgery, as to sort it out in retrospect can be complicated.
Every time I ask my pharmacy for a printout of my prescription it is provided with courtesy and ne’er a complaint; I just don’t think that I should have to trouble my community pharmacist to do what I consider is my prescribers job. In saying that, I know the advantages of healthmail and do not think that it should be discontinued. But having to ask for this information does make me feel a bit disempowered.
Despite unfailing courtesy and patience, the pharmacy end is not necessarily ideal either, but this is not the fault of community pharmacists. I’d really, really love it if someone could explain to me why there isn’t a standard dispensing period that is universally used.
Is it 28 or 30 days? Or as per the DPS, do I have to work on a calendar month? So, like me, patients may have to calculate when to visit for dispensing and this can necessitate more than one visit per month. I am a bit lazy, so now I collect my medication every 28 days across the board and then for the 30-day items I omit them when I realise that I still have a full item unopened. Now this works perfectly until I have a visit to one of my consultants and I get a new prescription (not on healthmail this time), which of course isn’t in sync with my perfectly organised system.
So, there is yet another visit to my community pharmacist. I do try to bring that into sync again when I get my prescription renewed every six months.
Maybe I should say something about ordering my prescription when it needs renewal. You will have noted that I am a polypharmacy patient and when all is added up the number of items is happily well into double figures. Well, I go to my GP and ask her to do it. Nothing could persuade me to do it online again barring another pandemic. During the pandemic I had to order online, and it was far from easy as I could only order one item at a time. For each item I had to enter the name, strength, dose, frequency and quantity required. It simply took ages.
All would have been fine except I had the experience of an item being omitted on healthmail. When I went back to reorder that item I had an extra fee. I could let the cynic in me pass a comment, but I’ll put it down to an oversight. Then they added in the facility to reorder the prescription as a ‘repeat all’. Problem solved. But no, that item was still missing; the reason being was that there was still one month left on the prescription for that item. This time I had to request it for five months to bring it into sync. As I said I’m lazy, so now I get my GP to do it all.
Shortages is another area of some difficulty that I have experienced, although this has been relatively smooth due to the proactive action of my community pharmacist in seeking an alternative prescription. This is not ideal as this medication may not work as well for me as the original item. Part of me would love to have a bigger safety margin in the amount of medication I hold so as not to feel so vulnerable, but I understand why stockpiling can be a problem from more than one perspective.
For food, toiletries or other items purchased regularly, I can keep an extra pack, find an alternative or do without and come to no harm. This is not the case with medication, which I have to take to stay well, and it leaves me with yet another sense of vulnerability and disempowerment; I have to rely on others to make decisions about me, which doesn’t come easily to me, and I can’t forward plan for myself.
“My lifesaver is the ‘My Medicines List’ which I update regularly when something changes.”
The final thing that I have found tricky is remembering all my medications when asked; I’m almost certain to leave something out. And I am asked in many clinical situations. I never thought that I would find myself forgetting but I am admitting that I occasionally do, especially as the number to recall increases. My lifesaver is the ‘My Medicines List’ which I update regularly when something changes. I would love it if this could be available for every patient in each pharmacy, each GP surgery, each hospital outpatient department and on hospital discharge . . . So why isn’t it?
So, there you have it, my current perspective on trying to manage my medications safely — for those who have endured til now, my thanks for staying the course!
I was asked to write this in my capacity as a patient advocate from Patients for Patient Safety Ireland. We are a small dynamic group affiliated to the World Health Organisation and work with all aspects of healthcare in Ireland to advocate for including the patient voice. I personally focus on Medication without Harm, but others are actively involved in other areas, for example health literacy, sepsis, open disclosure etc.
For myself I have learned much about being a patient from my colleagues and if I can bring this learning into making it easier for patients to manage their medication safely, then it will continue to be a real privilege.
Dublin Castle, Friday 29 November. See imsn.ie/conference for more information.
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