dispatches from the healthcare trenches
currently i am having fun researching doctors in the 1600s, and less fun on the phone to the doctor in the 2000s
It’s grey and it’s raining in Oxford, and I’m on the phone to the doctor for the second time this week, pleading.
It is an act I have failed to get better at with time — not just in the five days since I last rang the muscular-skeletal services to ask for an MRI, but over a lifetime of begging to be taken seriously by a medical system that seems intent on ignoring those it claims to care for. A lifetime of watching my family and friends face the same neglect.
If anything, my capacity to grovel has diminished. Now I just get angry.
Previously, the person at the end of the line has been a GP, a gynaecologist, mental health services. This time, its physio. Or rather, it isn’t. It’s the second layer of the apparently never-ending labyrinth of referral and triage required to see a physio, that illusive treasure at the centre of the maze. I should have brought my red string. Or a subscription to a rage room.
The first stage was a GP appointment. Easy enough. Surprisingly, the wait wasn’t too long, with GP appointments more or less back at pre-covid levels — not that you get to see anyone in person. As of last October, 29% of GP appointments were still carried out remotely.1 In many ways this is great for access after the pandemic, but it has changed the way doctors and patients interact, and risks problems slipping through without an in person screening or the face-to-face intimacy of a regular appointment. Plus, the story isn’t the same everywhere — London GP service provision has fallen dramatically despite an increase in patients, according to the Standard, with the highest proportion of patients waiting 2+ weeks in South West London.2 My mother’s GP in the area failed to see her promptly in person or refer her for adequate scans for a twisted ankle last year. It turned out to be a dirty break which healed incorrectly after a online physio gave her misguided advice, leaving her with debilitating chronic pain. Especially for women, already prone to understate their pain levels and equivocate to please others, a brusque and brief online phone call can lead serious issues like her’s to go unaddressed.
Once you’ve made it passed the sphinx’s riddle (erratic call time of a phone-call GP appointment) you reach the next stage. The referral. I have lived in Oxford for three and a half years now, in which I must have had about six or seven referrals to medical specialists. Of those, maybe two or three have led to a hospital appointment, and none of them to any meaningful diagnosis or treatment for my chronic issues. Mostly, the sphinx spits me back out with a referral letter and a bile-tinged promise of follow up.
What happens to these referrals? Where do they go? Do they even leave the GP’s office, or does she just role her eyes and stick them in the bin as soon as I leave? Why had the NHS not instituted a meaningful way to track them, to stay updated as to waiting times and request progression? Why do we allow for our genuine medical concerns, many of them serious, to be flung into the void, flushed away whilst our pains and anxieties only increase, sometimes with disastrous repercussions? We talk a lot about misdiagnosis and neglect when it comes to women’s health in particular, whether it’s in terms of gynaecological conditions like endometriosis or the scandalous lack of awareness about women’s heart attack symptoms — one study showed that UK women have a fifty per cent higher chance than men of receiving the wrong initial diagnosis following a heart attack.3 But is anyone really being listened to in the NHS right now? From ordinary patients to the neglected elderly or those trapped in exploitative and dehumanising ‘care’ systems, to underpaid junior doctors and unpaid medical students, it seems that no one is really being heard at all. Genuine, well-founded concerns about the NHS and calls for change are rebuffed with calls for privatisation or simply float down to join all our discarded referral letters in the waste paper bin.
Post-covid NHS backlog data shows that as of 2023, there are around 7.22 million people in the UK waiting for hospital treatment, with nearly 3.0 million of these waiting over 18 weeks. Hospitals present ‘a median waiting time for treatment of 14.5 weeks – nearly double the pre-Covid median wait of 7.5 weeks in February 2020’.4 It’s easy to pass this off as a pandemic problem, but the issue is a long-standing one — every winter for as long as I can remember, the news has been saturated with images of beds in corridors and ambulances stuck in the snow, with patients failing to get help for critical or chronic health conditions.
For my physio appointment, the referral was self-guided, an online AI which asked me to pinpoint my pain on a body map and then answer multiple choice questions. Leaving aside the question of internet accessibility, the process was frustrating and limited, about as fun as any AI ‘help’ chat. I suffer from bad TMJ syndrome, a long standing issue currently so painful I’m struggling to eat anything harder than porridge (I could live on porridge, but would really rather not). Anyway. The body map tool failed to let me select above my shoulders. The AI booked me a triage appointment — yes, there are more stages! I knew it was going to go brilliantly when I started reeling off my list of ailments and the caller stopped me to inform me that they could only deal with one issue per call. Which is all very well, except it’s called a muscular-skeletal system for a reason. On my second triage call, which began as the first with me begging for an MRI scan to assess the extent of the wear in my jaw and my inexplicable knee injury, I was refused any tests or scans as apparently the issue didn't sound serious. I understand the need for prioritising traumatic injuries in an overloaded system, but the neglect and belittling of chronic, lifelong issues which can flare up agonisingly with a mistaken bite seems misguided at best and cruel at worst. I was then advised to try some 'psychological therapy’ and ‘manage my stress’ — before the caller informed me he was ‘not an expert’. Which begged the question of exactly why I’d spent half an hour standing in the rain talking to him.
I believe strongly in the mind-body connection, the holistic and reciprocal relationship between our mental and physical states. In many ways, I’m convinced our early modern forebears, whose ideas about medicine I study, had it right in some respects. Prior to the advent of Cartesian dualism’s vision of the self as a brain with or in a body, mind and body were treated as one unit, with our emotions and impressions as physical as our injuries and vice versa. The Six Non Naturals of air, exercise, sleep, food and drink, excretion, and emotion were understood as vital to one’s overall wellbeing, and medical or dietary treatments had to be personalised to the individual constitution. Ironically, a popular plant-based brand in the UK lists its ‘five pillars of wellness’ as foods, exercise , water, mindfulness, and sleep. Intuitively, we still understand that our bodies are not machines and our brains are not disembodied computers. Yet our modern mainstream healthcare system isn't holistic and doesn’t acknowledge the delicate relationship between our brains and bodies. Rather, it pays lip service to the current emphasis on mental health, slapping ‘manage your stress’ or ‘go to therapy’ like a fraying plaster over every wound that isn't literally dripping blood. Besides, the idea that going to therapy is easy is laughable, especially on the NHS. Once you get past the waiting lists, there’s no guarantee you’ll receive an adequate standard of care. I was in CAMHS from age 13-18. The quality of treatment I received was wildly variable, including at least two therapists who did far more harm than help. Satisfaction with UK mental health services is particularly low, with less than half of patients surveyed last year reporting that they “definitely” got the help they needed.5 I know my chronic pain is partly psychological; I make a serious effort to manage my anxiety. Who knows, maybe this time a course of CBT would help (…). But in the meantime, the pain is still pain, and all I want is for it to go away.
I am incredibly lucky. My family can afford the occasional foray into private healthcare that many can’t. I might be able to book an MRI scan eventually, or find an osteopath who’s willing to treat my body as a complete unit. But that access shouldn’t only be restricted to those with a certain family income. In the 1600s, medical conflicts over status were rife, and fraudulent practitioners an issue — plus, most of the treatments fail to hold a candle to our modern drugs and therapies. But there were also those like Richard Napier, the physician whose casebooks are at the heart of my research. Napier treated people of all classes, genders, the mentally and physically unwell alike, treating tens of thousands of cases. He may prove the adage about doctors’ handwriting correct, but the attention to detail in the casebooks I’ve studied suggests he did one thing our modern practitioners are incapable of. He listened.
I’m nowhere near the front line, but navigating the healthcare system feels like being in the trenches. A kind of murky no-man’s-land where referral letters vanish into smoke and if you need urgent treatment it’s more likely to be in a car park than a private ward. A battlefield where waiting times for ambulances are so long and strikes so frequent that hospitals this winter warned people to be extra careful to avoid 999 calls on icy days. A war where the casualties are the marginalised and underrepresented, but where everyone is at risk, because all of us are human. Our bodies, the early moderns knew, are the medium through which we experience the world. We’re not just disembodied minds floating in automated flesh-bags — we are our bodies, their actions, pleasures, pains. We deserve to live in a world where such pains are not a life sentence. Where accessible, effective healthcare and social care systems are not a far off fantasy or a rhetorical battering ram for politicians, but a reality.
Maybe I’m expecting too much from our struggling healthcare services. Maybe my expectations were shaped by plastic stethoscopes and storybook doctors with white coats and stickers rewarding me for being well-behaved (when I was a toddler, I used to collect them proudly at the end of my bed). But I don’t think it should be too much to ask that our healthcare system functions better than those plastic children’s stethoscopes. I don’t think it’s too much to hope that when we ask for help, someone is listening.
https://digital.nhs.uk/data-and-information/publications/statistical/appointments-in-general-practice/october-2022
https://www.standard.co.uk/news/health/london-areas-with-longest-gp-wait-times-nhs-b1042336.html
https://www.bhf.org.uk/informationsupport/heart-matters-magazine/medical/women/misdiagnosis-of-heart-attacks-in-women
https://www.bma.org.uk/advice-and-support/nhs-delivery-and-workforce/pressures/nhs-backlog-data-analysis