RAPID TRANQUILISATION UNDER LINCOLNSHIRE PARTNERSHIP TRUST

I have requested CP11 Policy Protocol on the above and Rapid Tranquilisation Log going back to Ash Villa to date. I am very concerned at the level of over-drugging of RT on top of prescribed drugs.

Elizabeth is a poor/non metaboliser as proven by P450 liver enzyme tests, not that that means anything to Lincolnshire Partnership Trust. This means she should be on a low dosage but doctors will not budge on the high dosage currently prescribed. I am concerned at frequent ‘episodes’ lasting hours on end and resulting in A&E admission on several occasions. It is like someone have an epileptic fit but the difference is staff rapidly inject her on each occasion and I am concerned that CP11 Policy Protocol is not always implemented. There are certain procedures that should be carried out before RT is given for instance. Unlike some other Trusts LPFT’s Rapid Tranquilisation Policy is not so readily available. I have had to do a FOI request as I am being met with a wall of silence.

On 2nd October Elizabeth was in a bad way on Castle Ward and suffered an episode lasting from 2.00 pm until 7.30pm and taken to Lincoln County Hospital’s A&E. I am concerned that it is possible that RT logs are not being properly observed. Lorazepam has a 12 hr half life – if someone else takes over a different shift and injects again then this could be very harmful and maybe that is occurring resulting in these ‘episodes’ – is the serum count being calculated? I have proven from private scans there is something else wrong of a physical nature but under Lincolnshire Partnership Trust it has taken them two years to finally agree for Elizabeth to see a Neurologist. According to Elizabeth, Dr Selina came yesterday on the ward and claimed to be a Neurologist. I particularly wanted to speak to Dr Selina because I have had private scans done when they were refused as “unnecessary”. I hope this Dr is a Consultant Neurologist who is going to look at Elizabeth’s physical health.

I was completely cut out of ward round this week. No-one bothered to let me know. My name is on a list amongst about thirty others, most of whom are complete strangers. So many people invited yet no-one from the family. It is no wonder that Elizabeth does not like to attend and tells them that she does not like so many at her ward round. She then informed me that they descended upon her during her art group but it does not take a minute to ring me and I wasted time on the computer, phoning the ward waiting to be let into the Teams meeting. Next week I shall come in person to the ward for this meeting as this is not the first time there have been such problems.

On 2nd October (same day Elizabeth was rushed to A&E) there was an important meeting with Directors of Nursing from Trust and ICB. The meeting was as a result of a culmination of complaints unanswered satisfactorily by Pals going back months on end. The outcome was promising. The CTR i had requested previously refused has now been agreed. This will be independently chaired and also a fresh completely independent capacity assessment was offered. The most important thing of all was not resolved and that is the enormous dosage of “medication”, which is staying the same. They have also introduced Procyclidine injected as well. This is causing headaches to Elizabeth and she is complaining about her eyes yet no-one takes a blind bit of notice. Most concerning is the frequent rapid tranquilisations administered at times when she is not even in distress at random for no reason other than for the convenience of nursing staff. I do not think correct procedures have been carried out from/during the time at Ash Villa to date and not forgetting Cygnet either.

Elizabeth has complained that rapid tranquilisations are given sometimes for no reason and informed me that a nurse from Ash Villa told her this is a normal occurrence done “for the convenience of staff”.

When I have tried to discuss my concerns on medication at Ward round I was told it was not the time to discuss by Dr Khokhar and it would seem there someone above him – a Dr Greenall and possibly someone above him – could that be a Dr Kumar. I need to check. Some of these doctors have different trust email addresses so I have noted. I was told I would have to discuss medication on a 1-1 basis rather than openly at ward round. I cannot understand this when there seems to be many student doctors in attendance that could benefit from hearing my concerns. Why hide things which should be discussed openly and honestly like I am doing right now.

Various members of staff have played down the side effects that Elizabeth complains about. I am not even relieved or comforted by the fact a Neurologist came yesterday after all this time. My questions are is this a Consultant Neurologist or a Neuro Psychiatrist? Noone is giving any information apart from Elizabeth.

Elizabeth has told me that a nursing member of staff spoke of them trying to make her better but she quite rightly says she will never get better in there and I would agree because it is noisy, possessions go missing without explanation. Clothes missing from Ward 12 and the blanket I bought missing but if only there was good communication. The carer’s champion found out that the blanket was taken away because staff thought it was not fireproof. In that case I will look for a blanket that is in fact fireproof as how can anyone feel well if they are suffering from cold.

The Tribunal apparently took place on 5 October without any family members present. I was not surprised to hear the result from Elizabeth who did not want to attend her own tribunal and now the section is renewable annually. When I first moved I did not wish to challenge anything but now I cannot even if I wanted to because of sheer dishonesty by Council and Trust which enables the trapping of a vulnerable person for life. No mention on the care plan of any initiative to return to community care/living. Imagine being on a never ending prison sentence and desperately wanting to come home and be with family in peaceful quiet environment unlike the acute ward where Elizabeth has been for over 2 years now. Totally unsuitable environment despite the fact there are activities going on. Nothing is provided in the community and that is why my daughter is trapped for life. It is most certainly not because she is a risk to self or others because despite these episodes it is no worse than an epileptic fit so the reason they do not want her to come home is because of me. Because these people judge you as though they know you when they clearly do not. They write horrible things behind your back and get away with it. There is no accountability. We had hoped for a fresh start but Enfield are still responsible for S117 aftercare which they never provided previously. The discharge note from Enfield stated only physical health concerns but now I have proven there are indeed abnormal findings on the scan and I took part in a fabulous zoom conference with the wonderful Cavernoma Alliance the other day. So many people are being misdiagnosed with a mental illness when they have Cavernomas, lesions and inflammation of the brain. Because I have had private tests done the NHS can no longer ignore my claims and state that seeing a Neurologist is unnecessary but only a Consultant Neurologist should be involved in assessing Elizabeth regarding her underlying physical health conditions – there is NO WAY Elizabeth has Schizophrenia and I have proven it. I wish to share the findings of the scan with a Consultant Neurologist. I am going to take part in regular zoom meetings with the Cavernoma Alliance as it was very comforting to know we are not alone and to hear the experiences of so many others.

Anyway, I thought I would share with you the points of discussion and remedies of the recent meeting with Directors of Nursing for Trust and ICB as there are details of important tests that others may well like to request from their Trusts.

POINTS OF DISCUSSION – DIRECTOR OF NURSING & QUALITY LPFT AND DIRECTOR OF NURSING LICB

LEAVE	ONLY TWO HOURS ON WARD NOT ALLOWED EVEN IN THE GROUNDS OUTSIDE THE HOSPITAL.  VERY RESTRICTING.  WAS PREVIOUSLY ALLOCATED 6 HOURS OUTSIDE OF HOSPITAL   I have now got 2 hours outside the ward and took Elizabeth to the wonderful Carlton Centre nearby to the hospital. She had a great time and it all went well.
MEDICATION	VERY CONCERNING –  HIGH LEVEL REMAINS UNCHANGED.    ENFIELD WERE DOING EXTENSIVE TESTS PATHOLOGICALLY AND THEY WERE TAKING PHYSICAL HEALTH VERY SERIOUSLY BY MAKING REFERRALS TO NEUROLOGIST ETC.   ELIZABETH WAS REFUSED AN MRI SCAN PROMPTING ME TO HAVE TO GET THIS DONE PRIVATELY.  THE SCAN HAS BEEN EXAMINED BY EXPERTS AND THIS NEEDS DISCUSSING WITH THE NEUROLOGIST.   ENDOCRINOLOGIST PRIVATE TESTS REVEALED INSULIN RESISTANCE AND PCOS WHY HAS THERE NOT BEEN ANY REFERRALS? I am waiting to hear the answer to my question still and have requested referrals to Endocrinologist and Immunologist.   My concerns on medication have not been addressed and the “medication” remains at a high dosage and on top frequent RT following the‘ ‘episode’ on 2 October. A Neurologist (I hope it was a Consultant Neurologist) – Dr Selina came yesterday to see Elizabeth on Castle Ward so she told me.
TEMPORAL LOBES	ELIZABETH NEEDS CLOSE EXAMINATION. HOW IS THIS BEING FACILITATED? IT IS ANTI-PSYCHOTICS WHICH CAUSE INFLAMMATION AND ELIZABETH THEREFORE NEEDS ANTI-INFLAMMATORY DRUGS AS A CONSEQUENCE.  ELIZABETH WAS DENIED DR SHAHPASANDY’S LIMBIC TESTS IN CONNECTION WITH HIS RESEARCH AS BEING UNNECESSARY.   INFLAMMATION CAUSES MOOD CHANGES AND ALTERATION ON SUBGENUAL CINGULATE ACTIVITY AND MESOLIMBIC CONNECTIVITY.
BLOOD OXYGEN LEVELS	ELIZABETH NEEDS BLOOD OXYGEN LEVELS TESTED REGULARLY.  DANGEROUS BLOOD OXYGEN LEVELS RESULT IN BRAIN DAMAGE AND ORGAN DAMAGE.
QT PROLONGATION	MONITORING FOR QT PROLONGATION NEEDS TO BE DONE REGULARLY AND THIS APPEARS NOT TO BE DONE FREQUENTLY
RAPID TRANQUILIATION	IS A REGULATED ACTIVITY UNDER THE HEALTH AND SOCIAL CARE ACT 2008 REGULATED ACTIVITIES 2014.  THE TRUST MUST INFORM RELATIVES UNDER DUTY OF CANDOUR OF THIS AND ANY ADVERSE REACTION/OCCURRENCES AS A MATTER OF COURSE.
TESTS- C-REACTIVE PROTEIN	TESTS TO SEE IF C-REACTIVE PROTEIN (CRP) AND INTERLEUKIN – 6  (IL-6)  Are present
SEBACEOUS CYST	THIS IS WELL ASSOCIATED WITH LONG TERM USE OF NEUROLPTIC MEDICATIONS.  IT IS A POTENTIAL ENDOCRINE DISORDER LINKED TO INABILITY TO METABOLISE DRUGS  (Both endocrine tests and P450 liver enzyme tests) have proven this.  THE CYST IS NOT BENIGN.   THE CYST NEEDS REMOVING AND ELIZABETH NEEDS TO BE GIVEN ADVICE ON THIS UNDER THE INFORMED CONSENT ACT AND HER MOTHER SHOULD BE INCLUDED IN ASSISTING IE TAKING HER TO A NECESSARY APPOINTMENT IF ELIZABETH REFUSES VIA STAFF AS HER MOTHER HAS ALREADY SUCCEEDED WHERE STAFF FAILED TO TAKE HER TO THE PRIVATE MRI SCAN.
GLYMPHATIC SYSTEM TESTS   SLEEP DISRUPTION	It is suspected that Elizabeth has a dysfunctional glymphatic system after years of neuroleptic medication.  Has Elizabeth been tested for this?  If these tests have not been done then they need doing urgently.       LPFT are giving benzodiazepine tranquillisers to sedate rather than facilitate NREM and REM sleep.  That makes the neuro-degeneration worse.     Abstract:    The glymphatic system is a unique pathway that utilises end-feet Aquaporin 4 (AQP4) channels within perivascular astrocytes, which is believed to cause cerebrospinal fluid (CSF) inflow into perivascular space (PVS), providing nutrients and waste disposal of the brain parenchyma.   If nutrients are not provided and waste proteins build up brain atrophy will occur causing cognitive and memory dysfunction.    It is now recognised that the bulk flow of CSF within the PVS removes waste products, soluble proteins, and products of metabolic activity, such as amyloid-β (Aβ). In the experimental model, the glymphatic system is selectively active during slow-wave sleep, and its activity is affected by both sleep dysfunction and deprivation.    Sleep dysfunction can and is caused by rapid tranquillisation.  The glymphatic system will not function while the patient is tranquillised causing waste proteins to build up between the nerve axons and in the intracellular structure of the cell.  This causes brain atrophy (brain cell death).   Dysfunction of the glymphatic system has been established as a potential key driver of neurodegeneration. This hypothesis is indirectly supported by the close relationship between neurodegenerative diseases and sleep alterations, frequently occurring years before the clinical diagnosis.    Neurodegeneration causes the patient to slowly lose cognitive function leading to an increased lack of capacity.    Therefore, a detailed characterisation of the function of the glymphatic system in human physiology and disease would shed light on its early stage pathophysiology.    The study of the glymphatic system is also critical to identifying means for its pharmacological modulation, which may have the potential for disease modification. This review will critically outline the primary evidence from literature about the dysfunction of the glymphatic system in neurodegeneration and discuss the rationale and current knowledge about pharmacological modulation of the glymphatic system in the animal model and its potential clinical applications in human clinical trials.
	Sleep disruption can cause the build up of both amyloid plaques and tau proteins in the brain and breach the blood brain barrier.  Both of these effects are capable of causing significant brain atrophy and potentially severe psychiatric disturbance.  Studies carried out in the last decade show that disturbances in circadian sleep can cause psychosis indistinguishable from schizophrenia.     Amyloid plaques block neuronal synapses preventing signalling and tau tangles inside the nerve axon itself will destroy the microtubules that direct neurotransmitters such as dopamine and serotonin.  The damaged microtubules form tangles in the nerve itself (intraneuronal) and both plaques and tangles will destroy the cell leading to more damaged protein fragments in the brain and to brain atrophy.     These protein fragments are usually removed via the blood brain barrier by cerebrospinal fluid during quiescent sleep (NREM).  Neuroleptic medication (antipsychotics and anti-depressants) disrupt both NREM and REM sleep.     This has a doubly detrimental effect in that the disturbed REM sleep is associated with cognitive dysfunction and eventual psychotic symptoms. Disruption to NREM sleep prevents the glymphatic system from removing amyloid plaques and tau protein fragments.   A normally functioning brain will remove Aβ plaques and tau proteins, one subjected to neuroleptic medication will not be functioning ‘normally’ and the latest research links this directly to disturbed sleep.       Blood oxygen levels are also crucial to efficient brain functioning and blood oxygen levels falling below 88% are potentially fatal because irreversible damage will be caused to heart muscle and other internal organs.  Oxygen starvation to the brain causes very rapid cellular apoptosis (brain cell death) and potentially severe and irreversible brain damage.  There is a very strong body of medical literature on all of these effects but unfortunately most psychiatrists don’t want to know.     There is research taking place dealing mainly with patients who have Parkinson’s Disease.  The drugs used to treat it are notorious for causing seriously disrupted sleep because of course they are targeted at eurotransmitters.   The involvement of Aβ and tau proteins in the aetiology of Alzheimer’s Disease is being looked at as well as ADRs.  There is a need much more research on how they may be involved in psychiatric disorders as we already know that both of these potentially toxic proteins can be triggered by trauma and disrupted sleep.
TESTS FOR MULTI DRUG RESISTANCE ASSOCIATED PROTEIN 1 (MRP1)	It is important for Elizabeth to be tested for multi -drug resistance associated protein 1 (MRP1).   If transport proteins are not correctly expressed she could have serious adverse effects caused by inability to efflux drug substrates from brain tissue and this can lead to neurotovicity, another organic brain disorder.  This is the transport proten for Clopixol P-GTLYCOPROTEIN (p)-GP).   Please ensure these tests are carried out as a matter of urgency.
TRIBUNAL	05  OCTOBER RE EXPIRING SECTION 3 ON 27 OCTOBER 2023   I LOOK FORWARD TO MY INVITATION AS A POA FOR HEALTH AND WELFARE I SHOULD BE PRESENT IN ACCORDANCE WITH ELIZABETH’S WISHES. I was not invited and neither was anyone else present in the family and the result according to Elizabeth is that section renewed for another year with no end in sight. No wonder Elizabeth did not want to attend and was not feeling well enough due to having the episode prior.
OBSERVATION   AND EPISODES	IS THIS STILL 30 MINUTES  AND HOW MANY EPISODES HAS ELIZABETH HAD ON THE WARD SO FAR SINCE ASH VILLA.   THIS INFORMATION WILL BHE NEEDED FOR COURT.  IN ORDER TO SAVE TIME I AM ASKING FOR THIS INFORMATION IN ADVANCE PLUS THE UNREDACTED COPY OF DR BRADSHAW’S CAPACITY ASSESSMENT UNDER GDPR RULES AS THERE ARE COMMENTS RELATING TO ME CONTAINED THEREIN. I am still waiting for this and I am still waiting to hear about when all these tests will be carried out and I thought I would share the tests with everyone so that everyone can be asking their Trusts for pathological tests that should be given automatically not allowing patients to suffer for years on end because their concerns on physical health are being ignored under mental health.

More on Cavernomas

The comparator scan sent shows a cavernoma in the patients brain and there is a similar indication at approximately the same position in Elizabeth’s brain. A woman on the Cavernoma Alliance UK website describes being misdiagnosed until brain surgeon Mr Mohsen Javadpour identified a cavernoma on her brain. It appears that they are often overlooked in favour of psychiatric diagnosis. The cavernoma is a cluster of blood vessels that can leak into the brain and in that respect is definitely a lesion. These lesions are associated with immunological problems and inflammation (see attached paper) The amount of damage it can do is largely dependent on where in the brain it is and if that is one in Elizabeth’s scan I would expect it to cause problems with neurotransmitter signalling and possibly neuroleptic efficacy. Cavernomas are not malignant but can be disabling and lesions in the temporal lobe can cause psychiatric symptoms, especially violent mood swings. Neuroleptic & antipsychotics medication will not effectively treat cavernomas. This paper is very interesting too. Sayadnasiri M., Fadai F. Multiple cavernous angiomas associated with psychotic symptoms: a case report. Zahedan Journal of Research in Medical Sciences . 2016;18 doi: 10.17795/zjrms-3479.

Today I have received a letter from Will Quince MP Minister of State via Victoria Atkins MP. I was requesting genomic healthcare. He writes “The Government is committed to delivering genomic healthcare in the NHS”. In 2020 the Government published its ten year strategy for genomic healthcare. Our latest implementation plan published in December 2022 sets out in detail the progress made on implementing the strategy, including progress on offering all patients with a rare genetic condition a definitive molecular diagnosis using tests that will support research into their condition wherever possible. In October 2022 NHS England published the first strategy on Accelerating genomic medicine in the NHS.

The NHS in England have world leading expertise in genomic assessments. Genomic testing in the NHS is provided through the NHS Genomic Medicine Service (GMS) established in 2018 and delivered by a national genomic testing network of seven NHS genomic laboratory hubs (GLHs) covering the entire geography of England.

The NHS GLHs deliver testing as directed by the National Genomic Test Directory, which is available online at http://www.england.nhs.uk/publication/national-genomic-test-directories. This outlines the full range of genomic testing offered by the NHS, including tests for 3,200 rare diseases and over 200 cancer clinical indications.

The directory sets out the eligibility criteria for patients to access genomic testing that is commissioned nationally by the NHS in England, including the genomic targets to be tested and the method that should be used, including reference to guidelines set by the National Institute of Health and Care Excellence (NICE). The Directory is applicable nationally, providing a standardised approach.

Testing is available for all eligible patients across the whole of England. Individuals should discuss with their healthcare professionals whether genomic testing is appropriate for them, such as their GP or other healthcare professionals if they are already being seen in a relevant service, such as endocrinology. Their healthcare professional will then make a decision whether to refer the individual either directly or via an NHS clinical genomics service (CGS) for genomic testing, following clinical review of their and their family’s medical history if known and the relevant genomic testing eligibility criteria. Any genomic testing data will also be interpreted by clinical scientists and medical professionals that are specialists in the relevant area of testing.

There are 17 NHS CGSs which are commissioned by NHS England. They deliver a comprehensive clinical genomic and counselling service that directs the diagnosis, risk assessment and lifelong clinical management of patients of all ages and their families who have, or are at risk of having a rare genetic or genomic condition.

The NHS CGSs have a key role in providing care and coordinating care being provided by other clinical specialities to patients and their families. As part of their work, the patient and their family will access diagnosis and management relevant to their condition. They will also receive support and guidance so that they are able to understand their condition, its implications, and their options in relation to reproduction, screening, prevention and clinical management.

To support the clinical management of urgent cases, clinicians are also able to classify cases as urgent when a patient has a deteriorating or unstable condition that requires a quicker diagnosis. Training for clinicians on how to use these urgent pathways is being undertaken across the NHS GMS.”

WILL GUINCE MP, MINISTER OF STATE

The last paragraph would apply to Elizabeth who is deteriorating and requires a quicker diagnosis. The problem is getting such a referral as all requested referrals have been refused and the attitude is “let’s do things bit by bit. This is typical under MH care where no-one wishes to budge on diagnosis even when treatment is not working. Elizabeth should be referred to an Endocrinologist but just like the Neurologist this has been refused also under psychiatric secondary care. I have had private tests done on metabolism and also genetics in addition to Endocrinology but this is all being ignored. For many years I have been trying to get Elizabeth the right assessments by specialists so I will be very happy when Martha’s Rule comes into effect. When treatment does not work and you witness someone going downhill there should not be a struggle to get pathological tests done but everything is stacked up against you and if you dare to challenge like I have done you come up against tremendous backlash and bullying with councils getting involved and then the law is stacked up against you in favour of the professionals who call you “unsuitable” and human rights are forgotten.