PSYCHIATRIC DISORDER OR COULD IT BE NEUROLOGICAL?

When I phoned Headway some time ago I questioned what it meant in file notes going way back from UCL “anterior region medial temporal compromise”. I spoke to a MH nurse who said training when she was a MH nurse did not go anywhere far enough when it came to expertise of neurological conditions and I thought at the time something should be done about this. How many who end up on MH wards long term with a psychiatric disorder may instead have a physical health condition yet they are all lumped together on one ward that does not cater for the specialism of Neurological conditions and when these patients may be displaying ‘symptoms’ they are wrongly mistaken for ‘schizophrenia’ (which is just an umbrella label for other causes) leading to very wrong/harmful treatment which results in some patients never showing any sign of improvement/recovery like Elizabeth. This has been going on for years in her case now and there has been absolutely no improvement – not one of the drugs has worked and no investigation has ever been carried out into underlying causes when scientific genetic tests have proven she is a poor/non metaboliser. In fact under LPFT they ignored the P450 liver enzyme tests and raised the “medication” to enormous levels but now I am concerned at the extra drugs and constant prn every few days or so. Looking back, perhaps this was done for a reason ie to lose capacity for certain reasons but it did not work.

Whilst I agree with the Oliver McGowan training programme I feel professionals also need to be much better informed/educated in underlying neurological conditions of a physical health nature. There have been occasions when professionals state “you have schizophrenia” in response to Elizabeth saying “no I have autism” and this I feel is coercive. When treatment is not working based upon observation of “symptoms” there could be numerous reasons for behaviour displayed that may resemble schizophrenia when the condition is in fact of a physical nature. Comments such as “mother does not agree with diagnosis” un-medically trained professionals label you as being confrontational/”unsuitable” yet they should not be commenting in such a way or challenging expert opinion brought before them by a parent who has turned to various experts in desperation.

Vulnerable people held under MH on never-ending sections such as Elizabeth because nothing has worked re treatment need to be given the correct assessments to rule out other underlying causes which could be anything from endocrine dysfunction, inflammation of the brain and referrals need to be made to neurologists, immunologists, endocrinologists, geneticists and this is not being done leading to long term institutional care and harmful wrong treatment with excessive prn and seclusion in completely the wrong environment of a MH ward.

ENCEPHALITIS

Symptoms of encephalitis vary depending on the affected area of the brain, but often include headache, sensitivity to light, stiff neck, mental confusion and seizures. It’s important to see a doctor promptly if you are experiencing symptoms, which may not seem troubling at the time.

What is the life expectancy with encephalitis?

As with treatment, autoimmune encephalitis recovery depends mainly on the specific clinical case, the form of encephalitis, and the after-effects of the disease. However, the autoimmune encephalitis life expectancy after encephalitis, in general, ranges from 60 to 90 years in different countries.

Encephalitis can damage the brain and cause long-term problems including: memory loss (amnesia) personality and behavioural changes. speech and language problems (aphasia)

How many people have died from encephalitis?

Results. Globally, 1,444,720 incident cases, 89,900 deaths, and 4.80 million DALYs related to encephalitis were estimated in 2019. The age-standardized incidence rate and age-standardized mortality rate (ASMR) decreased from 23.17 and 2.18 to 19.33 and 1.19 per 100,000 person-years over the past 30 years, respectively.

What happens if encephalitis goes untreated?

Left untreated, autoimmune encephalitis can quickly become serious. It may lead to coma or permanent brain injury. In rare cases, it can be fatal.

Can encephalitis go undiagnosed?

There are also non-infectious causes such as autoimmune/rheumatological diseases and certain medications. Up to 60 percent of cases of encephalitis remain undiagnosed.14 Feb 2023

How does encephalitis affect behavior?

Following encephalitis, some people may experience emotional and behavioural changes including low mood, anxiety, depression, frustration, aggression, impulsivity, disinhibition, and/or poor emotional regulation.22 Jun 2017

Can encephalitis lead to dementia?

Most cases of encephalitis in adults are related to viral infection by HSV-1. This scenario enables the clinical evolution to neuroinflammatory and glial damage processes, ¹⁰ mostly threatening immunocompromised or immunosuppressed patients, whose possible unfavorable prognosis are cognitive impairment and dementia.

Does encephalitis cause altered mental status?

Important elements of history include immune status, exposure to insects or animals, travel history, vaccination history, geography, and time of year. The most common sign and symptoms are fever, headache, seizures, and altered mental status.

Seizures – this appears to be what Elizabeth is experiencing and I have read the care plan where it states “of high risk of mortality and choking”.

Elizabeth needs an endocrinology assessment (particularly since I have already proven in private tests that she has an endocrine dysfunction). She needs to see an immunologist and a geneticist because nothing is working with her care and treatment and she is stuck on a drug which is expensive and a complete waste of money. She has not shown any improvement whatsoever in nearly two years under LPFT and prior under BEHMHTNHS – it even states in file records listing all the useless drugs that she has not responded to “treatment resistant” ie as confirmed in scientific tests “poor/non metaboliser”

I have questioned whether Elizabeth could possibly have a rare genetic condition such as “Huntingdons” or similar but this, along with everything else, has not been explored:

HUNTINGDON’S DISEASE:

Huntington’s disease is an illness caused by a faulty gene in your DNA (the biological ‘instructions’ you inherit which tell your cells what to do).

The problem is that conditions such as this are for specialists to look into and under LPFT even an MRI scan has been denied despite the discharge note stating “abnormal findings pointing to CNS” and so have they ignored the extensive private endocrinology tests which is highly negligent. The top priority was to try to take away the POA from us. I know and have proven that there are underlying physical health conditions but when I asked for an endocrine assessment to check on what was already revealed privately, this was refused by doctors under LPFT. So was the MRI so I paid for the MRI scan to be done privately in Sleaford because I felt it was highly negligent on the part of doctors (especially one who did research into the Limbic system on another patient) to deprive his own research when it was discovered his former patient had inflammation of the brain not schizophrenia and had to be taken off the clopixal depot. He was displaying all the “symptoms” of schizophrenia by the way yet he did not have schizophrenia.

When a patient is admitted to a MH ward they are given very basic information on the drugs. It is not right/fair that patients are being misled in this respect to take treatment for life that does not even work for the sake of convenience without being offered the chance of proper assessments. It is wrong to do things on a trial and error basis and experiment on lots of different drugs when they should be doing assessments instead and they could be causing injury by such experimentation. It is no wonder some have anger issues because they are being ignored for the sake of convenience and besides anger is not a MH disorder whatsoever. It is not psychosis either. In fact it is quite understandable. Imagine if you were told you have schizophrenia and have to take drugs for life. This is a load of rubbish when what condition does the patient really have of a physical nature which might need a completely different treatment.

“Excessive use of prn is scandalous and indicates appallingly bad levels of patient care. If a patient remains in crisis for more than 48 hours they should have the drugs reviewed immediately as the failure to respond is cause by inability to metabolise. The episodes you describe are almost certainly caused by physical disruption in the meso-limbic pathway and prn medication will not work if receptors and pathways are blocked due to inflammation. A simple blood test will indicate inflammatory markers and if they are detected they should carry out a brain scan in the temporal lobe area. Elizabeth is quite right that if they left her alone during episodes with observation from a careful non invasive distance she would probably recover within hours or even minutes.

“Neuroleptic medications will cause signs resembling Chorea and they will normally subside if the medication is withdrawn. Frequent prn medication by injection will cause this effect to be manifested and too frequent use can cause severe neuronal damage by constantly blocking receptors and pathways. Inflammation in the mesolimbic pathway will interfere seriously with cognitition and make psychotic rebound states more frequent and pronounced.

The use of prn medication simply to quieten down a patient is coercion not medical treatment and a violation of just about all of the principlist medical ethics.

Elizabeth has had countless rapid tranquilisations on Ash Villa and Cygnet and already two on Castle Ward though I am checking on this right now and I will report each time. Message from Elizabeth: Received today (13.08.2023 at 17:18) “Hello some nurses gave me an injection two days ago. One with blue hair from Charlesworth Ward – one was a depot so what was the other one for???”

The P450 liver enzyme tests have been adopted by the NHS but how many people know about this. The results were “poor/non metaboliser”. The tests should be offered to everyone before prescribing rather than trial and error for many years.

What is disturbing is that not all file records are passed on from one hospital to another. For instance, Cygnet to Ward 12 and to Castle Ward and I said this was extremely wrong. I said that the NHS were paying for Cygnet a huge amount and so should have all the file notes/records. How on earth can they provide accurate care without reading the notes of a former hospital?

For any mother whose son/daughter is having frequent injections of prn then they should turn to the CQC and to Maria Caulfield and Steve Barclay who I feel has been dismissive of my complaint referring to MH rather than physical health. I as a parent want to know how many times Elizabeth has been injected under Ash Villa and Cygnet Meadowfield and I am keeping a close watch on Castle Ward. She was injected once on Ward 12, When you look at the highlighted comments above The episodes you describe are almost certainly caused by physical disruption in the meso-limbic pathway and prn medication will not work if receptors and pathways are blocked due to inflammation. I want some answers as I feel Elizabeth’s life is at risk under LPFT.

In fact the more mothers and fathers who get together on this the better as then the CQC cannot say “we cannot investigate individual cases” . The DOH need to look into this matter urgently and not respond with their standard letters to say they cannot intervene in individual cases when there are many cases involved and I would like to be contacted by any mothers and fathers concerned as no way should a vulnerable person be subjected to frequent prn which is torture and this is something I want the CQC to investigate especially in the case of Ash Villa where patients reported to me as well as Cygnet Meadowfield although I was pleased with Dr Memons who is a Neuro Psychiatrist and seemed to take a genuine interest. However, even a Neuro-psychiatrist has limitations as he is not an expert on genetics or other fields such as endocrinology or immunology and to check on Metabolic metabolism dysfunction is why I am turning to the SWAN CLINIC.

In terms of stigmatising words – the word ‘disorder‘ should be dropped as it may not be a mh disorder but a physical health condition awaiting extensive tests that the UK is failing to give to so many vulnerable people trapped forever on MH wards which are not even the correct environment which I think is absolutely disgusting when you think of the vast sums of money being wasted by the UK on wrong treatment for people who never get better because they have been given a label for life that is completely inaccurate – look at the waste of money and impact on the NHS when those people then go on to suffer injury and this is of public interest along with Local Authorities and their unregulated legal services departments, stealth and putting someone into care against their wishes instead of provision in the community- I will be featuring that another time.

In the meantime, I look forward to hearing from any other cases of a similar nature who would like to write their own experiences of Trusts on this blog in respect of frequent rapid tranquilisation and misdiagnosis.

I am also copying in some doctors who are taking the correct approach unlike the UK Government and this matter is of public interest as the UK are wasting vast sums of public money in this respect.