NOTHING IN THE DIARY – CASTLE WARD, PETER HODGKINSON UNIT LINCOLN COUNTY HOSPITAL

I have been regularly visiting my daughter on Sundays recently at around 2.30 pm. This week due to my error in typing April instead of May in my email and only realising this too late to rectify, sadly I am not allowed to see my daughter this Bank Holiday weekend. It is bad enough having heavy restrictions in place infringing on human rights on telephone and visiting than to be deprived of seeing her altogther as her only regular visitor this weekend. I had promised to bring some things that she requested to the ward and will still make the journey to bring her the shopping I would normally do even though I will not be allowed to see her.

I have just tried to ring the ward. I did not argue that it was protected meal-time but you cannot just ring her mobile phone number as the phone is clearly not with her and has been taken away and the team then have to organise someone to sit in and listen to all phone calls and make notes when it is me who makes contact. Others in the family not treated quite as bad but still cannot get through. It is normally a Healthcare Assistant who is put in charge of the supervision and note taking and God knows what they are writing behind my back. I am sure it is not nice.

This kind of treatment has been going on for a long time now with all staff loyally sticking together regardless of their own Code of Conduct which portrays a culture of bullying and one of non-accountability. There is only one person in charge overall imposing these rules as only a Responsible Clinician can, namely Dr W K.

From: susan bevis
Sent: Thursday, May 2, 2024 2:01:30 PM
To: CARECONCERNS (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) lpft.careconcerns@nhs.net
Subject: Elizabeth BEVIS 12.02.1987 Visit to see Elizabeth
 

For the Attention of Ms A Munro

Is Sunday 5th April OK to visit Elizabeth?   Has there been any change in the restrictions on leave?

Please can you respond to the queries mentioned in my former email.

Yours sincerely

Susan A Bevis
Mother POA and Litigation Friend

No answer whatsoever to the above email from the Management.

So tonight I will ensure that I phone Elizabeth to let her know what is going on. I will reassure her that I will come all the way to Lincoln which is an hour there and back just for the purpose of dropping in a few bits of shopping as I would normally do and was doing throughout the many weeks I was banned completely from visiting.

It is sad the way patients under the MH in this area of Lincolnshire are treated but then again most are treated differently to Elizabeth who is being deprived of meaningful family contact and leave and this has been going on for quite some time by a Responsible Clinician who will not budge and says “I am concerned for my patient” Carers too can be subject to severe bullying also if they dare to complain and it is a waste of time complaining when they are all well-in with the CQC.

Elizabeth says she is autistic which they choose to ignore completely. They say they cannot assess her on a ward but how comes Huntercombe could? For all the criticism some of the private sector institutions get, the very worst experience I have ever encountered has to be the current and this is NHS not private. Even Huntercombe all diagnosed her with high functioning Aspergers but now all of this is in question with the MRI scan results done privately and the constant seizures that can be life threatening as well as frequent rapid tranquilisations with benzodiazepam which should never be given in respect of epileptic fits.

Elizabeth has definitely deteriorated under LPFT’s appalling treatment and her hands could not stop shaking when I visited last. I have been told there is no management on duty during the long weekend. The Manager of this ward is Kashmir Moon and not once have I ever spoken with her. I have only one point of contact now and that is the email address of care concerns and I have featured already what kind of response you get from them. Normally, it is either a wall of silence or else it is a heartless letter devoid of any compassion by a designated member of staff – mostly unsigned completely as no-one wishes to take the slightest bit of responsibility.

Here are extracts of an email I sent today to Care Concerns:

From: susan bevis
Sent: 03 May 2024 11:15
To: CARECONCERNS (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) lpft.careconcerns@nhs.net

Subject: Paralegal’s Visit
 
For the Attention of Ms Ann Munro and LA Voiceability

 A paralegal came to see Elizabeth on 02.05.2024 accompanied by LA. Please explain.

The paralegal did all of the talking according to Elizabeth and it was all about her going into supported living.

Elizabeth was promised she could have her cat there in the supported living scheme but was not told where it is.

Please can you inform Nearest Relative C and S, other Attorney who need to know.

 Who arranged the paralegal?   How could Elizabeth have done this with her phone locked away still.

Elizabeth said very clearly she does not wish to go into supported living and that she wants to come home.

Elizabeth has made it very clear to all of us that she wishes to be close to her family not move out of area.

Elizabeth’s capacity is heavily disputed and as someone with capacity, Elizabeth’s wishes need to be heard.

Since LPFT rely on three “flawed” capacity assessments for displacement of me as NR a fresh capacity assessment is in need.

A fresh capacity assessment cannot be done unless the causative nexus is determined via Sheffield.

The cause of seizures is vital as Elizabeth’s life is at risk

What risk assessments are being done re supported living in regard to the seizures when full pathological tests not conducted

30th July has been arranged for MRI scan under Tesla 3 scanner.  Elizabeth needs to go for a few days to have proper EEG tests done.

If Elizabeth has epilepsy she should not be treated with prn benzos for rapid tranquilisation.

Prolonged and repeated use of benzodiaepines can increase the risk of rebound seizures or interictal epileptiform discharges (IEDs) in some individuals. Schizophrenia-like symptoms are observed in some patients and are associated with epileptiform discharges but not overt seizures. The good response to antiepileptic treatment could be interpreted in the context of a (para)epileptic pathomechanism.

“The EEG alterations might be due to a polygenetic effect due to different genes”.

This is why accurate diagnosis is so important. You will see in the case below that a patient with schizophrenia like symptoms had epilepsy and recovered when taken off antipsychotics and treated with anti-convulsants.

The idea that schizophrenia is ‘confirmed’ by daily observations conducted by unqualified staff is absurd. Care assistants cannot possibly know how to differentiate between IEDs and psychosis induced by other causes. This is why PANSS and associated physiological testing is crucial.  LPFT are in the dark ages when it comes to diagnosing and treating psychiatric patients. They neglect proper investigation of genetic markers in psychosis, they neglect EEG examination, they neglect genetic testing for treatment refractivity, they neglect investigation the potential inflammatory causes of brain disturbances and the ignore ADRs.

This indicates an ideological approach to diagnosing and treating psychosis rather than a medical one. Belief based medicine, not evidence based medicine.

Clozapine can actually induce epilepsy in some patients due to a genetic polymorphism. LPFT do not test for that either.

Schizophrenia Associated with Epileptiform Discharges without Seizures Successfully Treated with Levetiracetam

Dominique Endres1 Evgeniy Perlov1 Bernd Feige1 Dirk-Matthias Altenmüller2 Nils Venhoff3 Ludger Tebartz van Elst1*

1Section for Experimental Neuropsychiatry, Department of Psychiatry, Faculty of Medicine, University of Freiburg, Freiburg, Germany

2Freiburg Epilepsy Center, Department of Neurosurgery, Faculty of Medicine, University of Freiburg, Freiburg, Germany

3Department of Rheumatology and Clinical Immunology, Faculty of Medicine, University of Freiburg, Freiburg, Germany

Background: Schizophrenia-like disorders can be divided into endogenic or primary, idiopathic, polygenetic forms, and different secondary, organic subgroups [e.g., (para)epileptic, immunological, degenerative]. Epileptic and paraepileptic explanatory approaches have a long tradition due to the high rate of electroencephalography (EEG) alterations in patients with schizophrenia.

Case presentation: We present the case of a 23-year-old female patient suffering, since the age of 14 years, from a fluctuating paranoid hallucinatory syndrome with formal thought disorder, fear, delusions of persecution, auditory, visual, and tactile hallucinations, as well as negative and cognitive symptoms. Laboratory measurements showed increased titers of antinuclear antibodies (ANAs) in the context of ulcerative colitis. While there was no clear history or evidence of epileptic seizures, the EEG showed generalized 3 Hz polyspike wave complexes. Under treatment with levetiracetam, the symptoms disappeared and the patient was able to complete vocational training.

Conclusion: The schizophrenia-like symptoms associated with epileptiform discharges but not overt seizures and the good response to antiepileptic treatment could be interpreted in the context of a (para)epileptic pathomechanism. The EEG alterations might be due to a  polygenetic effect due to different genes. Mild immunological mechanisms in the framework of ulcerative colitis and increased ANA titers might have supported the network instability. This case report illustrates (1) the importance of EEG screenings in schizophrenia, (2) a potential pathogenetic role of epileptiform discharges in a subgroup of patients with schizophrenia-like symptoms, and (3) that antiepileptic medication with levetiracetam could be a successful treatment alternative in schizophrenia-like disorders with EEG alterations.

Background

Schizophrenia-like disorders are characterized by delusional perception and delusions of control, hallucinations (e.g., commenting or discussing voices), thought insertion or withdrawal, cognitive impairment, thought disorders, or social withdrawal.1 In addition to primary, endogenic or idiopathic, polygenetic forms, different secondary pathophysiological mechanisms [e.g., (para)epileptic, immunological, degenerative] can be assumed. Because of the high rates of electroencephalography (EEG) alterations, ranging from 7 to 60% in patients with schizophreniform syndromes, epileptic and paraepileptic explanatory approaches have a long tradition (1–3). In line with this assumption, we reported the first case of a young patient with a schizophrenia-like disorder, generalized spike-and-slow-wave complexes without epileptic seizures but with remission under treatment with valproate (4, 5). Immunological reasons might be due to autoantibody-associated autoimmune encephalitis, cerebral vasculitis, or collagenosis e.g., systemic lupus erythematosus (SLE). Immunological effects might lead to network instability and therefore cause (para)epileptic phenomena (7). The detection of a (para)epileptic or immunological mechanism opens new treatment perspectives, in that antiepileptics or immunomodulators may be helpful (4, 5, 7–10).

Case Presentation

Clinical Presentation

We present the case of a 23-year-old female office clerk suffering from fluctuating paranoid-hallucinatory symptoms since the age of 14 years (2007). Therefore, the diagnosis of paranoid schizophrenia was made by different psychiatrists. Although taking neuroleptics, in the course of the disease, the patient developed five episodes (for several weeks) with paranoid-hallucinatory exacerbation. In these episodes, the patient suffered from formal thought disorder, fear, delusions of persecution, auditory hallucinations with commenting, discussing, and commanding voices, visual hallucinations with seeing maggots in her room, and tactile hallucinations with the feeling of being touched from behind. In parallel to these exacerbations, the patient developed severe negative and cognitive symptoms including attention and memory deficits, fatigue, depressive mood, and sleep disturbances thus completing the psychopathological features of comprehensive schizophrenia. Neurological and medical examinations were normal.

Family History

There was a positive family history for unipolar depression, which was diagnosed earlier in two sisters, both parents, and both grandmothers. There was no history for schizophrenia-like psychopathology, bipolar disorder, or epilepsy.

Somatic and Developmental History

Symptoms started 6 weeks after pain of the large joints. Therefore, a rheumatological disease was discussed. During an external work-up of repeated diarrhea, a chronic inflammation gut disease (ulcerative colitis) was diagnosed in 2014 and treated with mesalazine. No birth complications or in utero abnormalities were remembered; the birth was performed by cesarean section. The early childhood development was normal. No febrile convulsions or inflammatory brain diseases were remembered. The patient suffered mild cerebral contusions at the age of 4 and 12 years.

Diagnostic Findings

The diagnostic findings are summarized in Table 1. Taken together, the immunological alterations were compatible with the previously known ulcerative colitis (11). The electrophysiological findings (Figure 1) would be compatible with primary (idiopathic) generalized epilepsy; however, the history for epileptic seizures including absences and myoclonic jerks was negative.

Table 1

On 08 February 2024 16:42 LPFT Mental Health Act Team sent an email regarding a question the NR (Elizabeth’s sister) put to them about Elizabeth’s PANSS score.

The PANSS score is a long established test approved by the Royal College of Psychiatrists and used by NHS Mental Health Teams in many of the trusts to determine the severity of the schizophrenia the patient is suffering from. Its purpose is to confirm diagnosis, to guide the treatment regimen and to determine suitability for matters such as section 17 leave, suitability of the patient for post-discharge accommodation and eventual discharge from mental health care.

This was the reply the NR received:

“LPFT does not use the PANSS scale for various reasons but does use the Glasgow Antipsychotic side effect scale (GASS). This measures the side effects of antipsychotics rather than the efficacy of antipsychotics”.

This is totally unsatisfactory for the following reasons. To begin with to quote their own words “for various reasons” gives no explanation at all why this scale is not used by LPFT and is a cursory and unhelpful excuse.

The PANSS scale as mentioned above is crucial in determining not only treatment but deprivation of liberty and the ability of Elizabeth to enjoy leave and to have quality time off the ward. Her stifling detention without hope of even the chance to have a day out or to spend time with her family on important occasions like Christmas and her birthday are a contribution to her state of mind and a detriment to her eventual recovery.

The scale is also used to determine an appropriate treatment regimen which goes beyond the simple use or rapid tranquillisation and isolation preferred by the staff of the hospital in which she is detained. The hospital has obstructed all attempts to have Elizabeth’s mental health condition based on a determination that their ‘diagnosis ‘ of schizophrenia would be the only option. Elizabeth is now seeing a neurologist but that has only happened because that intervention was sought by her mother and was indeed actively discouraged and obstructed by the Responsible Clinician and the Clinical Lead on the ward.

The Glasgow Antipsychotic Side effect (GASS) scale that they refer to in their email has an entirely different purpose to the PANSS scale and they are well aware of that. The GASS effect scale is for detecting adverse drug reactions and it has to be said if they are indeed using this they have ignored a number of these over the last two and a half years in spite of them being pointed out to them.

LPFT are fully aware that the GASS scale is not a substitute for PANSS but an entirely different test and the reply to the NR was disingenuous and unhelpful. To date no detailed explanation of why PANSS is not being used has been given and the Mental Health Act Team (notably the email does not identify its author) have failed to help once again.

In the absence of proper monitoring by the people entrusted with Elizabeth’s care is it hardly surprising that after two and a half years subjected to a deprivation of liberty regime more restrictive than a section 37/41 order and constant prn rapid tranquillisation that she has made no improvement and is as far away from discharge as she very has been.

The improvement and recovery of patients is higher with PANSS than with the informant based observation that LPFT use.

That, along with random selection of medication, failure to carry out tests and the ignoring of test results already established, failure to involve other healthcare professionals and even to obstruct Elizabeth from seeing them, oppressive deprivation of liberty including denial of her human rights and repeated use of rapid tranquillisation for their benefit and not hers has resulted in absolutely no improvement in 30 months of being held under the Mental Health Act in an acute admission setting.

LPFT have totally failed Elizabeth and tried to blame me for their failures. Dr K has even said I am contributive towards the seizures. Their admission that they don’t effectively observe patients but still continue oppressive deprivation of liberty just about sums up their failure.

Yours sincerely

Susan Bevis