Disclaimer: This post about the Manchester Royal Infirmary is not an attack on individual clinicians or institutions. It is exposing a pattern of systemic neglect and institutional harm that I have suffered. I am campaigning for systemic reform and an end to systemic neglect.

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Summary

The Manchester Royal Infirmary, like many other NHS trusts, failed to help me when they could have. Like all the other trusts, I saw three relevant departments: ophthalmology, oral maxillofacial surgery and ENT.

However, in spite of being one of the best hospitals in the country for head and neck services, they deflected responsibility back to Guy’s Hospital and the North Manchester General and did nothing. The Manchester Royal Infirmary was the hospital of neutrality and deliberate inaction. Here’s what happened:

Ophthalmology

The surgeon who performed my superficial parotidectomy asked my GP to refer me to ophthalmology regarding my ongoing periocular pain. I was also suffering from post-parotidectomy facial nerve palsy at the time and was unable to close my left eye.

In 2019, I consulted a highly regarded ocular plastic surgeon at the Manchester Royal Infirmary. I was really hopeful that she might help me because of her extensive experience and her reputation.

However, this oculoplastic surgeon saw me once and discharged me. She did no investigations: scans or blood tests regarding my periocular pain. She did diagnose my left astigmatism which was due to failed eye closure. However, regarding my longstanding eye pain, she deflected responsibility to the oral maxillofacial surgery department and included North Manchester General in the internal referral.

The Legacy from Leeds

It was palpable from the first and only meeting that she wanted to get rid of the case. She noted from the medical records that I had previously consulted a highly regarded professor at St Thomas’ Hospital regarding my ptosis, a matter she seemed reluctant to discuss.

She was also aware that the UK’s leading oculoplastic surgeon at Leeds Teaching Hospitals had dismissed me in 2014. As I state in both my video and blog post, that incident at Leeds Teaching Hospital accounts for why future ophthalmologists dismiss me so quickly. That professor set the precedent for the narrative of medical neglect that has played out, particularly with ophthalmology. The Manchester Royal Infirmary was a classic example of this.

I was disappointed. I liked her. She was a pleasant individual, and I genuinely believed that she had the potential to assist me. It was another lost opportunity.

Oral and Maxillofacial Surgery

I saw two oral and maxillofacial surgeons in a joint consultation at the Manchester Royal Infirmary. Again, they were both very experienced head and neck surgeons who had the potential to assist me with the ongoing pain in my remaining parotid gland. Either of them had the experience necessary to remove the rest of my gland.

The issue of my post-parotidectomy paralysis was less prominent. Thanks to the input of a physiotherapist at The Lindens Clinic in Timperley, my facial function was slowly returning.

Deflection of Responsibility

However, regarding my ongoing facial pain, their response was devastating. They spent two hours aggressively quizzing me about my symptoms. I felt intimidated and disbelieved about my facial pain. They offered me no treatment solutions or were willing to do any investigations. Firstly, they recommended that I return to the Salivary Gland Unit at Guy’s Hospital, which they said should perform a new sialogram and compare it to the one they did in 2017.

The oral maxillofacial team at the Manchester Royal Infirmary also referred me back to the North Manchester General, to the infectious diseases department. They requested that the team at North Manchester General conduct further diagnostic testing on my parotid tissue, which they had stored in their fridge. They asked them to test my tissue for rare infectious diseases like Bartonella and stated that I needed to remain under this team for my care.

However, the infectious diseases team at the NMG refused to do those tests on my tissue and discharged me after one appointment. Both hospitals left me with no care or treatment options.

Head and Neck Services, ENT

It was the head and neck team at Chorley Hospital (Lancashire Teaching Hospitals) that referred me to the head and neck team at the Manchester Royal Infirmary. Among the many NHS trusts that saw me once and subsequently referred me onwards was Lancashire Teaching Hospitals.

Once more, the head and neck surgeon I saw at the Manchester Royal Infirmary in late 2019 was a very skilled medical professional who had more than he needed to assist me.

Things got off to a strange start. While I was waiting for the surgeon to collect me, the nurse passed me. I was sitting in the corridor outside his consulting room, and she dropped my notes by accident.

My notes landed face up, and I saw a green medico-legal form that the Manchester Royal Infirmary had filled in. This is a form that medical teams fill out to defend themselves against a medical negligence claim. I had not seen a solicitor about any claim. I became aware that this trust was already on the defensive when I saw that medico-legal form. I felt cautious as I entered the consultation. The surgeon did not know I had seen this, but I had. And I couldn’t unsee it.

Botulinum Toxin Injections

The surgeon did have a glint of compassion in his eye, but I could also sense the guilt in his demeanour. He was aware that both his colleagues and the system had failed me.

The consultant gave me a token gesture instead. He didn’t do any investigations, but he offered me botulinum toxin injections for my facial pain. Botulinum toxin is used in the treatment of many facial pain disorders by producing temporary skeletal muscle relaxation. In pain management, botulinum toxin has an analgesic effect by reducing muscle hyperactivity. I have refused Botox injections for clear reasons.

My Reasons For Refusal

I have no diagnosis. Therefore, we do not know what we are treating. Botox is a dangerous chemical that can have serious side effects. I do not, therefore, want a clinician injecting chemicals into my face when we do not know what the cause of my pain is.

If you walk into a doctor’s surgery with a rash on your hand and the doctor says, ‘I don’t know what it is, but we’ll try lavender oil.’ The oil has the potential to help, but it also has the potential to exacerbate the rash. This is because the doctor is suggesting lavender oil for a rash that hasn’t been identified or diagnosed.

There is a high chance that Botox injections could make my condition worse. If infection is the cause of my pain, then there is a high probability that Botox would worsen my symptoms.

The rheumatologist who I saw in 2015 tried oral prednisolone, which is a steroid. Oral prednisolone made my symptoms far worse, so I do not want to take this risk. I am not being an ‘obstructive’ or ‘difficult’ patient. I have refused Botox injections because I do not want to accept chemical injections when we do not know what the injections are treating.

Conclusion

The Manchester Royal Infirmary did nothing. It was deliberate inaction. They chose, like many others, deflection and neutrality. As I mentioned in my post about York Hospital, I think that the MRI took no action, because to diagnose and intervene would have meant getting their hands dirty in a messy case.

It would have meant acknowledging the harm and neglect not just within their trust but across the entire network of NHS trusts, so they chose neutrality and left me in pain. It was easier.

My story is a political one. It’s not about me. It’s not about my pain, my suffering, or a human being asking for urgent help. It’s about politics – policy crossfire – about large institutions protecting reputations, shielding failures, and refusing to act because action would expose the scale of neglect.

Manchester Royal Infirmary didn’t fail to help. They chose not to help because helping would have meant shining a light on the system itself: a system that puts self-protectionism and silence before patient care and patient safety.

Photo Credits: Drew Beamer and Olga Guryanova on Unsplash. Tima Miroshnichenko, Isa QuePereira, Thirdman and Pixabay on Pexels.