Disclaimer: This post about Guy’s and St Thomas’ is not a personal attack on individual clinicians or institutions. I am exposing a serious and systemic pattern of neglect in the public interest. I am campaigning for systemic reform so that no one endures what I have survived.

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Summary

My experience at Guy’s and St Thomas’ NHS Foundation Trust was a missed opportunity to receive an accurate diagnosis and appropriate medical treatment for my condition. In 2016, three departments—Ophthalmology, Oral Maxillofacial Surgery, and Infectious Diseases—all identified abnormalities related to my facial pain.

However, they all disregarded the clinical findings and took no action. They all discharged me prematurely, leaving me in pain and providing me with no answers, care, or treatment options. This is what happened:

Ophthalmology

I saw a professor of ophthalmology in 2015 at St Thomas’ Hospital. He diagnosed my left ptosis. He told me that my left levitator had collapsed, but he took no action to look at what had caused this collapse to happen.

The professor also told me that my periocular pain is a problem with the soft tissue. His comment indicated that he knew that I have an infection or inflammatory problem around my left eye, but he did not do anything to help me. Despite this knowledge, he did nothing.

The professor discharged me after three appointments, advising me to ask my GP to refer me again for corrective ptosis surgery once my symptoms had subsided. However, my symptoms have yet to improve.

Infectious Diseases

I saw an infectious diseases consultant in October 2016 at St Thomas’ Hospital. He was rude and aggressive with me; I remember that. I also remember having severe pain, a stiff neck, and chills at the time. He did two blood tests; both showed high infection markers, notably, raised neutrophils.

However, he disregarded the clinical findings. The consultant gave me no answers or treatment options. He ignored the findings and belittled my symptoms. He also had the evidence on file that ophthalmology had diagnosed my left ptosis. However, he made no enquiries about this abnormal finding or the links between those findings and his blood tests.

Instead, the consultant made a futile suggestion that I see a chronic fatigue specialist, which had no relation to the clinical findings or to my symptoms. I wasn’t suffering with fatigue. I was in pain. It is my belief that the consultant knew that this was a complicated soft tissue infection (SSTI.)

Oral Maxillofacial Surgery

The biggest issue occurred at the Salivary Gland Unit at Guy’s Hospital, where I was a patient from January 2015 to February 2017. I saw an oral maxillofacial surgeon in January 2015 who found glandular malfunction in my left parotid gland. He found an obstruction in my gland and duct via sialography. They washed the obstruction away, which gave me four days of relief, but my symptoms returned shortly after that.

He also did a blood test which showed raised infection markers, notably with my neutrophils, and an MRI scan which detected enlargement of my left parotid gland.

In July 2015, an ultrasound showed mucous plugging in my gland, which is a thickening of saliva and a form of obstruction. A registrar then performed a sialendoscopy in December 2016, which showed a heavy thickening of saliva and obstruction. The registrar washed out my gland and put me forward for ongoing washouts every six weeks.

A Strange Turn of Events

There was then a strange unfolding of events that has left me with unresolved questions.

One month after I had seen the registrar, the lead dental radiologist at the Salivary Gland Unit carried out a second sialendoscopy in January 2017. The radiologist reported that “everything was normal.” The Salivary Gland Unit then discharged me from the clinic, having promised me regular washouts only one month previously.

Lack of Transparency

I am not making any accusations. However, I think that it is a possibility that the lead dental radiologist wasn’t transparent about the clinical findings from that sialendoscopy in January 2017. Here’s why I think that: The salivary gland unit found obstruction and mucous plugging in my parotid gland in 2015. The clinic letter from the Salivary Gland Unit in 2015 states this. The registrar then found further obstruction in 2016.

The histology report from my superficial parotidectomy at The North Manchester General Hospital in 2018, one year after Guy’s Hospital discharged me, showed abnormality in my parotid gland tissue. One of the anomalous findings was the presence of dense secretions in the ducts. The abnormality discovered by the salivary gland unit at Guy’s in 2015 and 2016 is exactly the same as this clinical finding. It’s therefore odd that the investigation that the dental radiologist conducted in 2017 was deemed “normal”.

I also think that it’s possible that if the radiologist has been telling the oral and maxillofacial surgeons I have been seeing that “everything was normal”, that could be the reason they discharged me after just one visit. This potential lack of transparency has possibly created a form of collusion around the ‘there is nothing wrong’ narrative.

A Missed Opportunity

My experience at Guy’s and St Thomas’ NHS Foundation Trust was heartbreaking. They missed an opportunity to diagnose and treat my condition. The trust could have diagnosed and resolved my condition back in 2016. Three departments had clinical information at their disposal that showed there was something clinically wrong. However, instead of communicating across departments and acting, they discharged me and left me in pain.

Accountability

I am seeking answers and accountability from Guy’s and St Thomas’ about why all three departments discharged me from their care when they found abnormal clinical findings. It is important for me to know why they did not do more to help me. I am also asking the Salivary Gland Unit for their transparency about those clinical findings from January 2017.

Being honest about clinical findings isn’t just a matter of professionalism – it’s a cornerstone of patient safety. When clinicians withhold or distort diagnostic information, it delays treatment, deepens suffering, and erodes trust in the entire healthcare system. This isn’t about an administrative error – it’s about integrity, accountability, and the right of every patient to receive timely, accurate care. As this article from Patient Safety Learning explains, diagnostic delays are often rooted in poor communication and cognitive bias, and the consequences can be life-altering

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Photo Credits: Claudio Shwartz and Chad Stembridge on Unsplash. Markus Winkler and Fotios Photos on Pexels.