I wrote a blog some six months ago about how a talk by Harold Shipman’s successor had convinced me that I should get access. I do most of my work online, complete my tax return online, make all my travel arrangements online, bank online, and buy books and CDs online, so surely I should be able to access my medical records online and ideally interact with my doctor and other specialists.
It’s been a long and complicated journey to get online. First, it wasn’t easy to find the email address of my GP. Eventually I rang the practice and was given an email address, which I used. It took her a long time for her to answer as her email address had changed and she rarely accessed the old one, which I’d been given.
(GPs have to be careful emailing patients as unless they are using a secure system they don’t know that the person emailing them is the person they say they are. I might have been a journalist from the News of the World trying to get access to my medical records. If so, I’d have been very disappointed by what I found.)
My GP said that she would ask the practice manager to help me. The practice manager confirmed that the practice used the EMIS system, which does have a way to allow patients access to their medical records. She also said that I was the first of the 8000 patients in the practice to ask for access. I was the earliest of the early adopters. The practice manager was keen to give me access as she assumed that others would follow, and she wanted to learn the process. She also applied for access to her records in her own practice—and still hasn’t been successful.
A few weeks later I was sent a letter with all the information I needed to access my records. I rushed to my computer and entered all the passwords. I did succeed in getting access to the system that allowed me to make an appointment and get a repeat prescription. But I couldn’t access my records.
So began months of going backwards and forwards, visiting the practice, and ringing EMIS. But after a few false dawns I finally gained access last week.
It was an anticlimax. My records contain almost no information about me. You’d have no idea from these records who I was, what I did, what I thought, or what I care about. You’d know more about me after two minutes on the world wide web than you would from reading everything in my medical record. It’s probably unreasonable of me to expect my medical records to say much about me, but I’d like them to say more. I would, for example, like them to say something about my values. If, for example, this train I’m writing on crashes and I’m severely brain damaged should the doctors do everything possible to keep me alive? The answer’s no, and I like that to be in my records. I’m also happy for every bit of me that’s usable to be put into others. That should be there too, and the doctors in Cheltenham, where the train might crash, should be able to access the records.
Then much of what was in my records was garbled and mis-spelt, presumably because the doctors are not very good at typing while they consult. That doesn’t bother me.
There was a note saying they should find out if I smoked for the QOF record. I don’t but once did, while doing the hippy trail in 1973.
And some of the most important information was wrong. It said that I took no drugs, and I do: I take the five ingredients of the polypill. These were prescribed by a cardiologist not the GP, but he had written to the practice. Unsurprisingly the information hadn’t made it into my notes. (I hadn’t been to the practice for a long time, and the last time I went I saw the nurse for malaria tablets.)
Despite the deficiencies of the records, I was very pleased to have online access and grateful to the practice manager for all the patience and persistence she’d shown. I emailed the GP saying how grateful I was, and I pointed out that I was actually taking five drugs. She was horrified and said that I had to be monitored if I was on all those drugs. I said that I didn’t think that was the case, and emailed the cardiologist to see what he thought. So began a mutual education process, which I hope will be useful.
In my email to the GP I confessed that many of my GP friends had told me how relieved they were that I was not their patient. She emailed me back and said that the practice felt “blessed” that I was a patient. I thought I detected sarcasm but was pleased all the same.