"SPFT - missed diagnosis - limbic encephalitis"

I was discharged from 10 nights in ITU with multiple organ failure (failure to breathe spontaneously, slow heart rate 40bpm, low sodium). I was inappropriately discharged out of ITU to psychiatrists. I was unable to stand or walk initially and had an arm tremor - these are neurological issues, not psychiatric, but I was not assessed by a neurologist.

I have since seen private neurologists - including a professor of neurology - and been advised the diagnosis was limbic encephalitis. I am a textbook case of this. The encephalitis was likely triggered by Covid in the month preceding. The covid was confirmed with a positive PCR test at that time.

During my stay in ITU a number of clear neurological issues were found - opsoclonus (eye jerks), myoclonus (leg jerks), altered limb reflexes, not breathing spontaneously, confused, ataxia (in a wheelchair initially then staggering gait needing two physios to stand). Despite these neurological signs I was not assessed by a neurologist or given standard tests for encephalitis. I was instead discharged inappropriately to SPFT psychiatrists.

The psychiatrists made no effort to consider my actual documented neurological symptoms, and refused to discuss with me what the diagnosis was. I asked in person and sent complaints by email but these were ignored.

Unanswered questions about my care:

1) SPFT psychiatrists sent demonstrably false information to my GP under a letter headed “Do not share with patient”. They sent a different version of the letter to me. Why?

2) Despite neurological findings (documented in my NHS medical records), various standard tests such as MRI brain scan, lumbar puncture and neuronal antibodies were not done. Why?

3) Despite documented neurological findings, I was not reviewed by a neurologist. Why?

4) Despite 10 nights in ITU with multiple organ failure and documented evidence of encephalitis I was transferred to psychiatrists without any neurological assessment. Why?

5) The psychiatrists prescribed clinically inappropriate drugs. There is no medical condition listed in the British National Formulary with licence indications requiring a cocktail of 14 + drugs - antipsychotics, anxiolytics, antidepressants, benzodiazepines, gabapentin and more. The risk of harm outweighed the benefits of each drug. Gabapentin is addictive and was in my opinion clinically inappropriate. Antipsychotics permanently damage the body’s metabolism and give people type 2 diabetes. Antipsychotics cannot be tolerated by patients with encephalitis, and in my opinion are clinically inappropriate given the 10 days in ITU with organ failure and neurological findings. I was given one dose of olanzapine and passed out and refused to take any more. My concerns about lack of diagnosis were ignored. I asked questions about what diagnosis each drug was being prescribed for. No one was able or willing to answer. Why?

6) Forcing patients to take drugs. The psychiatrists tried to coerce me in various ways to take drugs against my stated wishes. Why?

7) A senior nurse was aggressive to me and shouted at me to take the drugs. This was witnessed by doctors in that consultation. Why is this behaviour to patients allowed?

8) The psychiatrist mocked me instead of listening to me. Why is this behaviour to patients allowed?

9) I have since spoken to a ESHT neurologist who tells me there are poor relationships with ITU and they don’t have access to acute neurology beds. Why?

In my experience the SPFT service is not fit for purpose; and is institutionally sexist where drugging a woman to shut her up is the preferred option rather than making an effort to make a clinical diagnosis, or to communicate that diagnosis honestly and transparently if the doctors knew the diagnosis.

Having sought independent opinions the diagnosis is so clear cut in my case that SPFT clinical staff involved in my care either have an astonishing lack of knowledge about a well-known condition (limbic encephalitis) or they knew the diagnosis but chose not to tell me in an astonishing lack of candour.

Please retrain SPFT staff to diagnose limbic encephalitis and to communicate honestly with patients