Life on the other side… my patient journey

Anjali Vaidyanathan is a GP in Manchester. She is also a GP Medical Student Tutor and recently became a Widening Participation Champion for Manchester University. She is Mum to a 3 year old Thomas the Tank enthusiast.

Another day another scan… this time it’s a bone mineral density scan (or DEXA as we more affectionately call it). As I sit alone and wait in the crowded waiting room, buzzing with an array of visions and noises, I start to ponder my own ‘patient journey’ and life on the other side of the doctor’s chair.

It’s certainly made me think a lot. About everything. From the constant waiting, to the unanswered questions, the consultation process, the umpteen tests that get ordered as a snowball effect (turns out once you start seeing doctors, we like to find things and do even more tests), and more waiting.

As doctors we are often quite happy to fill in a form, request a repeat test, refer for further investigation, but up until now, (maternity care aside) I have rarely as an adult been on the other side of the table. I say “as an adult” because as a child I was actually quite accustomed to receiving healthcare: open heart surgery, a hernia operation, fractured elbow. But all of that, thankfully, came to a finish by the time I was about 10. So I don’t really remember an awful lot of it. Which is probably for the best.

But now, at the ripe old age of 37, I find myself back on the consulting room couch. It’s nothing serious, which is something to be grateful for. I foolishly fractured my cuboid bone while walking down the street (and no, I didn’t sue the council). A trip and twist of my ankle on an icy December afternoon, and since then it’s been a whistle stop tour of life as a patient.

The journey began in A&E. A five hour wait with husband and 3 year old in tow, I was mainly feeling extremely grateful for the large flat screen TV in Minors showing CBeebies and for the lovely vending machine. Never has a constant stream of Milky bar buttons been so needed. Eventually, after some painful prodding and poking, and an X-ray,  I’m given a provisional diagnosis of fractured cuboid. Ah yes, the cuboid. I think it might be time to revisit the anatomy books. Which I’ll certainly have time to do, as I’ve been advised not to weight bear at all for two weeks. Which is probably what they used to call bed rest in the olden days. So it’s off to bed for me, armed with anatomy books and the latest heat magazine. Boredom? What’s that? I’ve got back-to-back Kardashian’s for company.

Two weeks later, and I’m in fracture clinic. A zoo-like experience consisting of vast numbers of mummified humans, hobbling around in casts and bandages. Crowded, over-stuffed, and chaotic. It can’t have helped that it was Christmas week and the world and his wife has also decided to also fall over in the ice or after their Christmas do. How inconsiderate of them. Anyway, after my long wait, a repeat X-ray and some further prodding, I was out. And confused. Had I broken my foot? Was it soft tissue? What do I do next? I clearly hadn’t absorbed all the information. Help! Should I weight bear? Should I not weight bear? Agghh! I cant remember!! Lesson learned. Must pay better attention….

So a further few fracture clinic appointments over the next two months, differing diagnoses being pondered, and much head scratching, and I’m still hopping around on one foot like the mad March hare. My foot is agony and I can barely press it to the floor, even lightly. I probably should take those pain killers they gave me. And weight bear less. And rest. Which, as it turns out, is more boring than I had anticipated.

So, next step, the scanner.

Ah, the scan. That wonderful diagnostic tool much loved by patients and doctors alike. Everyone wants a scan don’t they!?  “I need a scan”, “get me a scan”, “I demand a scan” – phrases I often hear but I never thought I’d be using for myself. Turns out I might be a nightmare patient. Or not. Who knows? Anyway, I got, not one, but two scans in the end.  First stop CT. A bit weird but a manageable experience. Apparently I have bone oedema. Which sounds pretty horrid.

And then the big one, the MRI scan. Yikes. This should come with a health warning. Not to be taken lightly. This is enough to put anyone off going to see a doctor ever again. Like being trapped in a cave whilst having horrible techno beats blasted in your ears. Luckily I have an amazing narcoleptic ability to fall sleep anywhere, so I used the time to catch up on a few zeds. So not all bad I guess, but still an experience I will avoid in future.

But on the plus side, I finally have a definitive diagnosis. Yay! I now know what patients mean now when they say they want answers. I feel more satisfied and my fracture is confirmed. And my sanity is temporarily restored. At least I wasn’t going mad after all. I was certain that this level of pain and swelling couldn’t all be fabricated.

But then reality hits. Oh no. I have a fracture. I’m told it can take 6-12 months to heal. I have to wear a massive air-boot, and I won’t be able to walk without crutches, drive my car, or skip around in beautiful summer wedges for ABSOLUTELY AGES! Disaster. And I don’t seem to be getting the answers I want. I want time-frames, prognostic likelihoods, quantitive data, but I don’t seem to be getting this. Rationally, I know that this is because they don’t actually know and can’t give me this information. But, in my fracture-addled head, this is not helpful.

I suspect the consultant doesn’t care too much for my heel obsession (me being vertically challenged and all) and how long it may be until I can swap the ugly boot for my only-worn-once-pink-suede-court-heels, but bizarrely that’s all I seem to be fixated on. That and being able to go for a lovely country stroll (which is normally my idea of hell)… I think the lack of sun exposure may be going to my head.

Which brings me onto vitamin D. So as my fracture is rare and unusual for the mechanism of injury, and the fact it’s taking a million years to heal, I am now under suspicion for osteopenia and low vitamin D. I love the word suspicion, it makes it sound like some sort of criminal act that my skin doesn’t want to absorb adequate UVB rays, and that it should be arrested for this. But thankfully this doesn’t happen. And instead I’m sent off to the blood clinic to be stabbed and jabbed.

Having bloods done is usually a pet hate of mine. I’m normally extremely needle phobic so this is quite daunting. The phlebotomy waiting area is reminiscent of the cheese counter in Asda. We all take a numbered ticket and sit and wait in the hope we don’t fall asleep into our crumpled copy of Readers Digest as our number is called. As I wait, I start to get flashbacks of having to be physically restrained by two midwives  while they tried to get my 28 week bloods (I blame the hormones), and I almost up and leave.

But then my name is called so I obligingly do as I’m told. And, rather surprisingly, I just hold out my arm and let her take blood. No fuss. No screaming. No restraining. Done. Wow. I’m really proud of myself. In my head I’m doing a victory dance a la Carlton Banks from the Fresh Prince of Bel Air. I  feel like I deserve a superhero sticker like you used to get at the dentist. But sadly I’m already being ushered out and the next person called in. One in one out. I guess I’ll have to make do with a piece of cotton wool and some surgical tape.

But the bloods bravery(!) was worth it. Turns out I am vitamin D deficient and another prescription awaits. As does a DEXA scan. Another test to add to the ever growing repertoire. Which brings me up to date. Four months down the line, I’m still recovering and still officially a ‘patient’, but hopefully I’ll be off this ride soon.

So what have I learned from being a patient? Most importantly the NHS is pretty damn good. The staff, the people, the efficiency. I’ve been thoroughly tested, treated, prodded and poked to the nth degree. Not bad for a ‘freebie’ service.

But there’s lots of waiting. And even more waiting. And we often don’t get told a lot. And when we do we probably aren’t listening. And when we are listening we probably don’t do as we are told. And you will definitely have to have tests. Lots of them. And find your way around various clinics and hospitals. But hospitals are big and you will get lost. And there’s lots of people in there who are also either waiting or lost. And if you arrive late you may be thrown out. So better to be on time and not lost. And be prepared to wait. And bring your own magazines. And a map.

But most of all, as a doctor, it has given me a new found respect for all my patients. It’s a difficult slog. Busy. Time consuming.  Stressful. Confusing. Not to mention the valuable time taken out of your ‘normal’ everyday  lives. So all hail the patient, we should all be proud of ourselves. Now where’s that superhero sticker?