Amanda Ferguson, 45, was suspected of taking drugs in the emergency room. Jesse North, meanwhile, was initially diagnosed with vertigo but, like Amanda, was also suffering with an early onset brainstem stroke. He was 25.
With 20-year-old model Kati, a clinical assessment pointed to either drugs or epilepsy. In the 20 years since, she has lived with long-term Locked-In Syndrome. Pre-judgements can be catastrophic, especially when it comes to stroke.
Rachel Capps was a bit of an enigma when she presented with her symptoms to A+E staff, so they gave her a shot of adrenalin and, by doing so, inadvertently sped up a full-blown and devastating stroke.
Brin Helliwell, 47, had a bike accident so his shoulder was treated and stitched before he was discharged as fit and healthy.
Eight hours later, he survived a massive right hemispshere aeschaemic stroke. Linda Jones said her son (37) “made several trips to his doctor and the emergency room but no one suggested his were early onset stroke symptoms until after he had had the stroke”.
My own story started with a catastrophic misdiagnosis by a junior doctor in A+E on 7 February 2010. I presented with slurring and the most piercing headache. I had a severe pain in the base of my head and was unable to look at light. I was 39, an obsessive fell runner, business owner and married mother of three dependent children.
Clearly, my stress diagnosis seemed reasonable didn’t it? I wasn’t offered a CT or MRI scan. My blood pressure was in normal range, though very high indeed for a very fit runner.
The doctor told me to “go home to rest and take some cocodamol”. This was despite having never had a migraine in my life. Five hours later, I collapsed at my home, half an hour away from hospital, with a right vertebral artery dissection, occlusion and infarction and required months of hospital rehabilitation, followed by years of my private convalescence.
I could go on and on with case studies from stroke survivors whose misdiagnoses include complex migraine, vertigo, dizziness, double-vision, stress, being drunk or on drugs, food poisoning, epilepsy, pinched nerves and meningitis.
But what about potential solutions to the problem? I have my own opinions on how to reduce early onset young stroke misdiagnosis in emergency departments too. I also accept stroke is tricky to diagnose, however.
Firstly, could we have an independent systematic review of younger stroke survivor case studies? We stroke campaigners often feel fobbed off that our many anecdotal stories are not admissible, yet there is a lack of evidence-based research of case studies.
Secondly, what about making MRI testing/results available 24/7 in A+E for patients who present with persistent headaches which haven’t abated with paracetamol but have lasted more than 72 hours?
Also, A+E doctors should perform intra-arterial thrombolysis (t-PA) treatments within the first three hours of stroke symptoms in the emergency room or ambulance.
Furthermore, there still appears to be a clinical stroke age bias which discriminates against young people in A+E.
Anyone with a brain can have a stroke. The F.A.S.T. stroke awareness tool works well for the public, but it’s far too simple as a clinical diagnostic tool in A+E. I believe the ROSIER assessment tool was also age-biased, so I came up with my own acronym which I think would be more accurate in a clinical setting.
B.Y.E.F.A.S.T or Balance, eYesight, hEadache, Face, Arm, Slurring and Time (to call 999) would be more thorough. Instead of using hospital posters to raise awareness with hospital staff, I would suggest exploiting social media channels – where clinicians actually hang out – to spread this message to frontline medical professionals.
Tweetchats, forums, Facebook groups and Linkedin professional networks could all be used to raise clinical awareness. We are generally poor at exploiting social media to reduce health costs and improve outcomes. Let’s address that while stopping more young lives being ruined by stroke misdiagnosis.
Kate Allatt suffered a severe brain stem stroke at 39 and locked-in syndrome (LIS) as a result. She has since battled back to independence, recovering her speech and the ability to walk and has a best-selling memoir under her belt. She campaigns for greater awareness of stroke symptoms in young people and supports LIS patients around world.