Dangerous Discrimination at NHS Fife
Disclaimer: This post about my experiences at NHS Fife is not a personal attack on clinicians or institutions. It raises the serious issue of systemic mental health discrimination in healthcare in the public interest. This post is calling for the end to stigmatisation in healthcare and equal access for all to healthcare services.
Summary
In 2020, I experienced an incident of dangerous discrimination at NHS Fife that not only shattered my trust in the system but which has profoundly affected me and my outlook on the world and people.
What happened was a devastating violation of my integrity at NHS Fife. A psychiatrist—who had never met or spoken to me—accessed my records and wrote a letter claiming I have factitious disorder, stating my facial pain is “made up to feed the need to have a sick role”.
Context
In 2019, I fell into a mental health crisis. My crisis was caused by living with unrelenting facial pain for years. The incessant obstacles with NHS trusts who refused to see me about my facial pain condition also prompted my crisis. On top of my pain was the frustration regarding clinicians finding abnormal pathology but refusing to act on those findings. The combination of all three factors pushed me into a crisis state that I had never experienced before.
In 2020, I made a naive and foolish decision. I moved up to Fife, thinking that I may get a better shot of receiving medical treatment from surgeons up in Scotland. I arrived in Fife in crisis and accepted a two-week respite admission into Whyteman’s Brae Hospital from the mental health team.
Upon returning to the community, I received support from a community psychiatric nurse (CPN), who visited me on a weekly basis. This support was instrumental in helping me cope with the distress I was experiencing due to my untreated facial pain. I did not have a psychiatrist.
A Cruel Twist of Fate
My GP referred me to head and neck services at NHS Fife for my facial pain. I saw an ENT consultant in November 2020 at The Victoria Hospital in Kirkcaldy. He agreed to do some scans and refer me to tertiary head and neck services in Lothian. After I had the MRI scan in November 2020, I returned to see him in January 2021.
I could never, in a million years, have seen this stab in the back coming. This consultant told me that he had a letter from my psychiatrist. I had no psychiatrist.
He received a letter claiming that my facial pain was purely “fictionalised”. I asked the ENT consultant who this psychiatrist was, and I had never heard of the person. It transpires that a psychiatrist in Fife who had never met me or spoken to me accessed my records and wrote and published a letter that said that I am making up my facial pain ‘to feed the need to have a sick role’.
He sent this letter to multiple agencies in Fife.
Denial of Care
As a result of this letter, both NHS Fife and NHS Lothian denied me access to care for my facial pain. NHS Fife Pain Management refused to see me. They rejected a referral from Head and Neck Services at NHS Lothian. And an infectious diseases consultant also discharged me and took no action regarding two blood tests which both showed raised infection markers.
Letter from NHS Fife Pain Management stating that they refused to see me following a referral from NHS Lothian.
A blood test done by infectious diseases at NHS Fife in November 2021, which showed raised infection markers. No action taken.
A blood test done by infectious diseases in November 2021 at NHS Fife, which showed raised infection markers. No action taken.
This denial of care from NHS Fife left me to live not only with unresolved physical pain, but it also left me lost in a cloud of fear, confusion and victimisation that is difficult to put into words.
My Medical Records
Thankfully, this psychiatrist’s discriminatory diagnosis has not been entered onto my record summary in England or Scotland. However, having that discriminatory letter on my records whilst I was living in Scotland was terrifying.
In Scotland, their system of digital record keeping is called Sci-Gateway, and it is different from System One in England. Sci Gateway allows any medical consultant in secondary care to have instant access to all of your records and correspondences. This ability to see a patient’s full records is more challenging for secondary clinicians to do in England. This means that when I went to Accident and Emergency, called 111, or attended any outpatient appointments in Scotland in secondary care, clinicians could easily see that letter.
This reality made living in Scotland terrifying. Whenever I attended any medical appointments, the stigmatisation and discrimination were a given. As soon as the second lockdown lifted, I left and moved back to England.
Personal Impact
This incident was a violation of my integrity and a deep betrayal. It took courage to leave a home of 16 years in England and move up to Fife in search of medical help. This letter scuppered my chances of receiving that medical help. The medical profession viewed me as a fruitcake after he published that letter. The publication of the letter resulted in systemic discrimination and stigmatisation, which is a very frightening form of bullying and exclusion to experience. I felt trapped and alone, like I had nowhere to turn.
Legislation Against Discrimination
The Equality Act 2010 is in place to shield protected characteristics from direct and indirect discrimination. My experience of being denied medical treatment for a physical condition due to discrimination was a breach of this legislation.
The Equality and Human Rights Commission also confirmed that this letter is potentially a breach of two of my human rights. They confirmed that it was potentially a breach of Article 8: The Right to Privacy (which includes protection of one’s personal and psychological integrity) and Article 14: The Right to Protection from Discrimination.
The General Medical Council
General Medical Council in central London. They regulate and discipline the country’s doctors.
I raised a complaint about the psychiatrist’s actions with the GMC. My complaint was simple: the psychiatrist wrote a damaging and discriminatory letter without ever meeting or speaking to me. His letter had led to NHS trusts denying me treatment for my facial pain.
The GMC opened a provisional enquiry into my complaint. This is an initial investigation.
They found that the psychiatrist who wrote this letter had gone through my notes. He had noticed that when I had been in Whyteman’s Brae for the two-week respite break, the duty psychiatrist, whom I saw twice, had written in my notes that he thought I was making up my facial pain. That is where I got the information from.
The GMC did not find the psychiatrist unfit to practise. That wasn’t an issue for me.
Lack of Transparency
My issue was that the GMC was not fully transparent with me. I complained to the GMC that the psychiatrist wrote this discriminatory letter without ever meeting me or speaking to me.
My complaint to the GMC about the psychiatrist Fife, stating he wrote a letter about me without having met me or spoken to me.
They found that he had taken his information from my notes. In their final report, the GMC stated in their summary that I had complained that the psychiatrist wrote this letter without evaluating my clinical records.
The final report from the GMC demonstrates how they reworded my complaint to state that I said he “wrote a letter without adequate assessment of records.” This is not what I said.
This was not what I said. I said that the psychiatrist wrote this discriminatory letter without ever meeting me or speaking to me.
The GMC’s conclusion that the psychiatrist had based his information on an earlier record did not bother me. It was their lack of transparency regarding the details of my complaint that concerned and upset me. They changed my wording.
The GMC’s alteration of the wording in my complaint—specifically, their assertion that I had complained about the psychiatrist ‘not looking in my records’—was inaccurate and appeared to manipulate my complaint to align with their narrative. I found this alteration to be disheartening and dishonest.
Duty of Candour
The General Medical Council are the publishers of The Professional Duty of Candour. The GMC set the standards for doctors behaving honestly. They are not setting an example if they are not completely open and honest with the public. If the GMC asks medical professionals to respond to complaints with candour, then it is critical that they act openly and honestly with the public. I would hesitate to approach them again now.
Conclusion
Discrimination and misdiagnosis in healthcare are dangerous. They lead, as in my case, to denial of healthcare for physical conditions that need intervention and treatment.
The Department of Health must tackle stigmatisation in healthcare. It’s not enough for Good Medical Practice to say that doctors must not ‘discriminate against patients’.
Integrating stigma awareness training in hospitals and GP practices is an essential pathway to tackling discrimination. It will ensure that everybody within the protected groups of the Equality Act has equal access to healthcare.
The elimination of stigmatisation and discrimination will also ensure that we have a fully inclusive healthcare system that does not marginalise patients based on bias and prejudice.
It’s time for change.
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Photo Credits: John, Elliot FZ, Alexas Fotos, Ekaterina Bolovtsova and Pavel Danilyuk on Pexels. Irwan on Unsplash.