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Expert patients and repeat medications

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It's rare that I post personal information of any kind on a website such as this, but this really irked me so felt it was worth sharing.

Context: I've been an Asthma sufferer since the age of 3 years old. I know exactly how to manage my condition having had it for over 50 years, and have always used a blue ventolin inhaler as and when necessary (perhaps once every 2-3 months). I have not had any serious issues with my Asthma for at least 20 years, and then only in Hayfever season.

Issue: I only renew my inhaler when it expires, every 2 years or so. Therefore it is not listed on my repeat medications list. My most recent one had just run out, so I needed a replacement.

Action: I emailed the GP's website as I knew I was meant to, and received an automated email back saying that I would receive a response within 5 working days. So far so good.

Response: I received another email response 2 days later (pretty good!) saying that the GP would have to call me to run through why I needed a new inhaler.

GP call: The GP rang on the set day and within the allocated time window and started asking me how often I used the inhaler, for what, and did I really need that or the preventative one (which I've had before). At the end of our 10 minute call, she agreed that I just needed a replacement blue ventolin inhaler, as I had asked for in the first place.

What a waste of the GP's time, and mine!!

It made me think that it would be a helpful thing if certain patients with decades of experience in managing their condition(s) in a very stable way could be classed as 'expert patients' on their GP record. This could save a huge amount of wasted time on both sides!!

This blog post first appeared on Linkedin on 30 October 2022. I will post some of the responses to it below for added insight.

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A response from @HelenH, CEO of Patient Safety Learning:
"I have the same issue. Also I have monthly repeat medications for another long term condition, but have rather weirdly started getting monthly asthma inhalers - prevention and treatment. More than I need. I’ll have to go back and get them to change that. Not a very flexible or customer responsive system."

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A response from Saira Arif, from ORCHA:
"I am also an asthma sufferer Clive...another thing in common 🙂 since the age of 4 ... I think what you are suggesting is spot on. We must catch up one day, I've got some stories!"

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A response from Jonathan Gregory, an Oncologist:
"Hi Clive, I couldn't agree more. It sounds like my asthma is very similar to yours. I have an identical interaction with the GP when I need a repeat prescription every 2 years or so, despite being a hospital clinician.
There is also the issue of more regular repeat prescriptions, I appreciate there is a need for some medication review - side effect checks, are they still needed etc, but there are long term patients who are also 'experts' who have to chase about for repeat prescriptions every 4-8 weeks for years on end and a GP has to sign them off (probably not really considering the issue) - do we really want to use GP's for such low value tasks that also do not deliver value for patients?"

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A response by Hisham Haq, co-founder at SLOSH AI Solutions:
"Hey Clive, the vast majority are not as qued on. On a real basis had someone use their inhaler like a perfume!
What will help is when your GP knows you and even then you need to see the people to make sure they come in for their review. Everyone can learn all the time and things change."

I responded: "I guess the trust is a two way street, and continuation of care with the same GP is an element of that, and increasingly rare these days."

Hisham responded: "Clive, true and not valued or appreciated where it is delivered. Hence a dying art."

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A response by Vijay Luthra, from Capita Healthcare:
"Spot on Clive. Globally, clinicians and administrators in healthcare systems need to take account of patient literacy and digital inclusion.
There are some patients who are perfectly capable of managing significant aspects of their own care and with the burden of chronic disease increasing, these people should be empowered and equipped to do so and thereby relieve some of the burden on clinicians and health ecosystems."

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A response by Ayelet Baron, futurologist and author:
"Imagine a future where the doctor is no longer at the center of sickcare ... it's coming. And we need you fully breathing!"

A response to her by Dr Gyles Morrison, a clinical UX expert:
"Yep, this is the sort of products I work on. We need to shift the power from clinicians to patients."

A further response by Ayelet Baron:
"Gyles, only when we each step into our power. And wouldn't it be amazing when we no longer call people patients once they step into the system. One of the conscious leaders in my first book shares a story of how dehumanizing it is when we visit a doctor and put on a gown. We are immediately seen as a patient and we can be perfectly healthy.

We need healthy language to support healthy people and not just focus on disease. Pioneers in health and wellness who are focusing on our holistic four bodies are putting the human in the center. I've experienced some incredible new systems that are preventive.

But it takes us, like Clive, to see the opportunity in everything and imagine a healthy reality that supports the vast majority of us, not the few.

It's insane that in the US the first question you are asked when contacting the system is what's your insurance and what pharmacy are you at. For those of us who take no pharmaceuticals, it's quite bizarre."

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A response by Loy Lobo, past president of the Digital Health Section of the Royal Society of Medicine:
"This is what happens when tech is used to make healthcare more "efficient" and it ends up making the relationship between the doctor and patient transactional. If the GP really knew you, either as a person as they used to, or from your data as they ought to now, maybe this would not happen."

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A response by Jono Broad, digital QI lead for Primary Care at NHS England:
"I fully understand the situation and would agree with you with one caveat I would want this checked at an annual review and if agreed I would then want the patient to be able to self prescribe from a list of medication that is approved so we would not then have to use this important resource at all within an agreed framework. One day we will be able to manage our own care better."

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A response by Elaine Bousefield, digital mental health founder:
"Yep that would make sense except there would need to be a protocol written to define what is meant by an ‘expert patient.’ It is doable though"

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A response by Lisa Rickers, a nurse specialist:
"Yes the one size fits all approach is rarely effective. It would be great to personalise this with a shared agreement between you and your GP with review dates and how you can collect a repeat prescriptions between each review."

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I guess we need to find a way to distinguish between genuine experts and those who, for example, think it is a good idea to give left-over antibiotics to friends.  (https://www.theguardian.com/society/2022/oct/16/therese-coffey-criticised-for-giving-leftover-antibiotics-to-a-friend).

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Ugh, that sounds frustrating! Dealing with unnecessary hoops for a simple inhaler replacement can be a real hassle. The idea of classifying experienced patients as 'expert patients' is brilliant – could save a lot of time and streamline the process

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