Disclaimer: This post is not a personal attack on individuals or institutions. I am exposing a serious and systemic pattern of neglect in the public interest. My campaign is for systemic reform so that no one endures what I have survived.

Summary

My medical story begins at the Leeds Teaching Hospitals. It was also the beginning of the legacy of medical neglect and the beginning of my medical journey. In 2014, a professor of ophthalmology found and diagnosed an infection. He admitted me for 48 hours of IV antibiotics, but he then discharged me without doing a blood test first to see if the infection had improved.

He also ordered my GP to stop my antibiotics. Because of his carelessness, doctors have denied for years that my illness is due to an infection. Also, his actions have had a knock-on effect on the way future ophthalmologists have viewed me. Numerous ophthalmologists around the UK have dismissed me. This one decision that the professor made has set off a cycle of years of neglect.

This is what happened at Leeds Teaching Hospitals:

Ophthalmology

My facial pain condition began in 2013. It was triggered by a flea bite to my left eyelid. Orbital cellulitis was the initial diagnosis, and severe orbital pain was my main issue. I saw a professor of ophthalmology, an oculoplastic surgeon at Leeds Teaching Hospital, in January 2014. He detected and diagnosed me with an infection via two blood tests. Both showed raised infection markers. His clinic letter to my GP clearly states that infection is the cause of my pain.

A clinic letter from 2014, written by a professor of ophthalmology, stating that infection is the cause of my condition.

One of the 2014 blood tests that revealed infection was performed by the ophthalmology professor.

The professor of ophthalmology admitted me for 48 hours of IV ciprofloxacin and oral linezolid. At the end of those 48 hours, he discharged me, and he provided me with no follow-up care. He didn’t do a repeat blood test to see if the infection had improved before he discharged me. The surgeon also wrote to my GP at the time and told them to prescribe no more antibiotics. After he discharged me, my condition severely worsened. I got very sick, and my pain worsened.

I was also forced to seek help privately, and this care cost me £18000 of borrowed money, which bought me antibiotics and blood tests under the care of a private rheumatologist in London for two years. After receiving treatment at a private hospital, my condition stabilised.

Domino Effect

Since this incident in 2014, I have seen over five ophthalmologists about my periocular pain. I have seen them at different clinics at various NHS Trusts, but they have all discharged me after one appointment with no treatment or answers even when they have identified and detected abnormal clinical findings.

Oral Maxillofacial Surgery

In 2022, my GP referred me to oral maxillofacial surgery at Leeds Teaching Hospitals for my left-sided facial pain in the remaining left parotid gland. My GP sent the referral to a named clinician at the oral maxillofacial department. It was York Hospital who instructed him to refer me there.

Leeds Teaching Hospitals refused the referral and did not give me a reason why they would not see me. Oral maxillofacial surgery discharged me without even seeing me.

Accountability

This is how one poor decision can lead to a systemic failure of care. These decisions that Leeds Teaching Hospital made have had a critical impact on how my medical journey has unfolded. If they had made different decisions back in 2014, I am convinced that I would not have faced this 12-year diagnostic delay.

I would like answers and accountability from Leeds Teaching Hospital about why they made these poor decisions. Accountability and openness are crucial to a patient’s healing after they have been harmed by the healthcare system.

In order to guarantee safe healthcare and patient safety, accountability and transparency are also essential. I am therefore asking Leeds Teaching Hospital to be accountable for their actions and decisions.

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Photo Credits: Tom Wilson on Unsplash. Fernando Capetillo and Brett Jordan on Pexels