Disclaimer: This post about NHS Lothian is not an attack on individual clinicians. It is raising awareness about the dangers of systemic discrimination and delayed care in the public interest so that no one else endures what I have survived.

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Summary

NHS Lothian was, by far, the worst experience I have had of an NHS trust. I have been deeply impacted by the harsh and dehumanising treatment I received while I was a patient at NHS Lothian.

A surgeon at NHS Lothian stonewalled and silenced me. I faced outrageous prejudice and discrimination, and I experienced a lack of duty of candour in response to my complaint. This is what happened at NHS Lothian:

The odds were not in my favour

The ENT department at NHS Fife referred me to head and neck services at NHS Lothian about my left facial pain. They had found an enlarged masseter muscle on my left side. The odds were stacked up against me before I even arrived at NHS Lothian. The referring surgeon at NHS Fife sent the new surgeon at Lothian the discriminatory letter that a psychiatrist in Fife had written about me. I knew I was heading for trouble. I could feel it in my bones.

It’s important to say that at this time my left ear pain was acute. I was in agony with a feeling of fullness in that ear. I also developed a banging sound in that ear, pulsatile tinnitus, which was like sound attacks in my head.

Stonewalled & Silenced

I saw the surgeon at NHS Lothian in July 2020. He planned to perform some scans to look at my parotid gland. The surgeon told me that he would see me again after the scans to find ‘a way forward’. I asked him if he would refer me to ophthalmology about my periocular pain and infectious diseases. He said he would do both.

One week after I saw the consultant, I had an MRI scan of the brain, an MRI of the neck, a CT scan of the neck and a bone scan. I never heard from him again. The surgeon ignored me for 18 weeks. It was horrific and so painful. I wrote to him three times. I requested a follow-up consultation from him; however, he did not respond.

He did refer me to NHS Fife pain management, but they refused to see me. He also referred me to the infectious diseases team, who discharged me after two appointments despite finding abnormality in two blood tests. Being ignored by this surgeon for eighteen weeks was so painful, and it was made worse by the fact that I was living with worsening ear pain.

 Obscene Discrimination

The ENT surgeon, who I saw, wrote an inappropriate and discriminatory comment about me on a radiology request form. On the request form for a CT scan, which he sent to the radiology team, the surgeon wrote, ‘Be careful with this one. The patient has significant psychiatric problems.’

The dehumanising way that NHS Lothian treated me was fundamentally rooted in this comment.

I was absolutely horrified and appalled when I saw this comment. Firstly, this man had met me once. He didn’t know me, and secondly, whatever his judgements were about me, they had no place to be written on a radiology form that was to investigate pathology in my parotid gland, where pathology had previously been found both at Guy’s Hospital and North Manchester General Hospital.

The surgeon’s discriminatory comment is also a breach of the Equality Act 2010, which protects certain groups from discrimination.

No Duty of Candour

The biggest punch from NHS Lothian came in their response to my complaint. I complained to them that the surgeon had promised to see me again to find a way forward but that he refused to give me a follow-up consultation. I complained that he had left me with worsening ear pain and no resolution for eighteen weeks.

After a long delay, they replied by telling me they were closing my file. NHS Lothian told me to go to NHS Fife pain management to deal with my pain. They gave me this instruction knowing that NHS pain management had refused to see me. It was their surgeon who had referred me to NHS Fife pain management. He had received their refusal letter, so he knew.

 

I was left with no options for care or future steps after this trust led me down a dead end. It was just devastating. I was stuck in a corner with no way to get help, helpless.

Professional Duty of Candour

Their response to my complaint was a breach of the Professional Duty of Candour, published by the General Medical Council and the Nursing and Midwifery Council.

The Professional Duty of Candour states that:

• Every health and care professional must be open and honest with patients and people in their care when something that goes wrong with their treatment or care causes, or has the potential to cause, harm or distress.

This means that health and care professionals must:

• tell the person (or, where appropriate, their advocate, carer or family) when something has gone wrong
• apologise to the person (or, where appropriate, their advocate, carer or family)
• offer an appropriate remedy or support to put matters right (if possible)
• Explain fully to the person (or, where appropriate, their advocate, carer or family) the short- and long-term effects of what has happened.[i]

NHS Lothian did not do any of the above. Critically, they did not offer any support or explain why the surgeon refused to offer me a follow-up consultation, which is a basic tenet when delivering care to a patient. It is unreasonable to refuse to see a patient again, especially when the patient has written to you three times with questions about their condition.

The surgeon’s refusal to answer my questions was also a breach of Good Medical Practice, which states that doctors must:

• 23. (a) Answer questions honestly.
• 28. Give patients information they need and want in a way they can understand. [ii]

He did neither.

My Request to NHS Lothian

I am making a request to NHS Lothian to remove the discriminatory comment from the radiology request form. I am requesting this because the comment has no place there, and it is breeding systemic bias against me. That comment is now on my radiology records. If a new NHS trust requests those scans from NHS Lothian, they will see the surgeon’s comment, and it will cause them to view me negatively.

I am also asking NHS Lothian to answer my questions about the scans that they did. I did not get any answers to my questions because of the surgeon’s refusal to give me a follow-up consultation.

My questions are:

What is the visible asymmetry in my face?

What are the large areas of intense white around my cheekbone? Is it calcified tissue?

Has my nasalis tissue and muscle now started to wear away?

Is my orbital and cheekbone now damaged, as it looks different on the left side?

Conclusion

My experiences at NHS Lothian were not only dehumanising. They were damning. They involved denial of care for no reason, discrimination, silencing and a violation of guidelines about candour. Their conduct left me feeling alone and with nowhere to turn.

Delays in care, outright discrimination, and a lack of accountability pose significant risks. They force a patient to live with undiagnosed pain for longer than is necessary, which deepens both physical and mental suffering. This conduct is cruel, and it is not what healthcare is about. Healthcare is about curing people of illness and disease, and their ruthless treatment of me serves as a critical warning for them to re-evaluate how they treat patients.

FootNotes

[i] The General Medical Council and The Nursing and Midwifery Council, (joint guidance): Openness and Honesty when Things go Wrong; The Professional Duty of Candour, June, 2015

[ii] The General Medical Council: Good Medical Practice, January, 2024.

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Photo Credits: Thirdman and Mart Production on Pexels. Alexis Fauvat, Andreia Cunha and Milos Tomsevic on Unsplash.