(This is relatively personal but I’m sure you won’t hold that against me. If you don’t like thinking about medical things, press the back button now).
Right.
I was diagnosed with Fibroadenoma and had surgery in my early 20s. So when I found a new lump in my breast last month I was immediately referred to Guy’s & St Thomas’s Hospital. This wasn’t my first visit. I’d had two ultrasounds there in the last 15 years (in the interest of keeping an eye on things). So I wasn’t really worried about having to ‘advocate for myself’ because they’d have my patient record. Except they didn’t.
I didn’t wait at all and was seen within 10 minutes of arriving. I saw a clinical fellow who told me ‘they changed their IT system some years ago’ and I found myself explaining my entire history over again. I took my top off, she inspected me and marked me up with a white pen. I put my clothes back on and was sent back to the waiting room.
I was then called in by someone new, took my top off again and had my first ever mammogram (someone please innovate this torture device out of the market). I put my clothes back on for the second time and returned to the waiting room. My scans were sent to someone who wasn’t satisfied so I was called into a different room to take a 3D mammogram for which I took my top off again. I got dressed again and was back in the waiting room with a very crumpled shirt.
I eventually made it into a dark room with 3 women staring at a computer. I was going to get an ultrasound (the initial aim of the referral). But as I took my top off for the fourth time, the most senior doctor saw my 20 year old scar and said ‘oh you’ve had surgery before, that’s probably what we’ve been picking up on the mammograms’. Uhm.
I’d been in this process for almost an hour and it sounds like noone had listened to what i had to say and noone had written anything down. They ended up identifying some cysts (the new lump I felt) which I opted not to have drained but conducted a biopsy to make sure my old fibroadenoma was still benign.
As I left the hospital, 2 hours after I’d arrived, feeling worse for wear, I wondered whether we would have bothered if someone had seen my scans from my last visit. I don’t mind preventative measures but I mind feeling like health data is a myth.
The next day, I remembered the high profile 2024 cyber-incident. I can’t know for sure whether they lost my file or have an aggressive GDPR deletion policy. Either way, I will be adopting my late mother’s habit of having a binder ready with a comprehensive medical history because we can’t and shouldn’t trust the machines.