NHS   

LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST

                                                                                                     

Mental Health Act Administration Office

                                                                                                                Trust Headquarters

                                                                                                                St Georges

                                                                                                                Long Leys Road

                                                                                                                LINCOLN    LN1 1FS

                                                                                                                20 October 2023

In Confidence

Mrs Susan Bevis

Dear Mrs Bevis

We have been informed about an incident that took place in Reception at Trust Headquarters, St Georges Site on Wednesday 18^th October 2023, in which you presented as hostile and aggressive, demanding immediate access to a senior manager

As an employer LPFT has a duty of care for the health,  safety and wellbeing of its staff.   We also have a legal responsibility to provide a safe and secure working environment for staff.  Staff mental health is as important as their physical health.  Any incident in which an employee is abused, threatened or assaulted in circumstances relating to their work is unacceptable and not tolerated.  This includes the serious or persistent use of verbal abuse, aggressive tone or language and swearing.

In accordance with NHS guidance, such behaviour is not acceptable and you are now formally warned that if there is a repeat of this or similar behaviour again in the future at any LPFT site the Police will be called to escort you from Trust premises.

Going forward please ensure that you only attend Castle Ward for your pre-booked appointment times once a week.  This will allow ward staff to facilitate the visits as directed by Elizabeth’s Responsible Clinician as part of the plan for her care and treatment;  please be assured that these decisions have not been made by staff in Trust Headquarters or other teams and will be reviewed regularly.  Unannounced visits to Castle Ward to see Elizabeth will not be able to be facilitated.

Yours sincerely

THE MENTAL HEALTH ACT AND LEGAL TEAM

CHAIR  KEVIN LOCKYER

CHIEF EXECUTIVE:  SARAH CONNERY    

WWW.LPFT.NHS.UK 

The above letter has no signature so naturally I would like to know who is conducting the case against me. I have therefore written as follows:

From: susan bevis
Sent: 25 October 2023 21:50
To: CONNERY, Sarah (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); kevin.lockyer@nhs.net; lpft.lpftrecords@nhs.net; PALS(LPT) (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST);
Subject: Letter dated 20.10.2023 My Visit to Trust Offices 18.10.2023 ATTENTION OF H. S. LPFT RECORDS

Dear Ms Connery and Mr Lockyer

It is with sad regret I am having to write directly to yourselves.

I am attaching letter that is completely unsigned and would be grateful if you would give me the name of the person conducting the ‘criminal case’ against me.

Under GDPR Rules I therefore request all CCTV footage and recordings of the alleged “threatening behaviour”.  This will be needed for court proceedings.

Previous allegations of a similar nature at Ash Villa would have also had CCTV footage, especially my ‘alleged assault’ (this was verbal and resulted in 3 x Police cars being called to Ash Villa) of a member of staff but Ms S./records at LPFT have failed to produce evidence.

If there is no such evidence I therefore request an apology for the misunderstanding and the removal of such threatening allegations mentioned in the most recent letter and going back to Ash Villa.

I therefore look forward to receiving all recordings, CCTV footage relating to my alleged conduct and the name of the person who is conducting the case against me as per the attached unsigned letter.

I would finally point out that I was accompanied by a friend who may also require CCTV footage under GDPR Rules.

Look forward to receiving this as soon as possible

Yours sincerely

SUSAN BEVIS   POA

When I visited Trust Headquarters on the 18 October I was refused a meeting with anyone there to discuss my concerns regarding leave being supervised and all S17 leave cancelled. I have had contradictory information regarding who actually imposed the complete ban because when myself and a friend came back in the evening to visit my daughter we were told a decision had been made at Executive level from Trust HQ. The earlier ban had been by Dr Khokhar who has overall control as RC.

There was no argument about not being able to see anyone. I simply asked politely for a piece of paper to write the following:

“Dr K is refusing 17 leave to my daughter and imposing supervised visits only. The visit I had last week was for 2 hours that went well.    

What is meant by denying leave on account of me being “bad influence?”

In what way am I a “bad influence?”

How does banning S17 leave tie in with the law? Is this not a violation of HRA 1998 Art 8 and Right to Family Contact?

Dr K mentioned that everything was being done in line with your Policy (words to that effect)?

Please supply your policy on deprivation of S17 leave with family.

Please supply CP11 rapid tranquilisation Policy and log

There was an accident at Ash Villa where Elizabeth banged her head on the floor of the seclusion room after rapid tranquilisation.

I would like to share the private MRI scan with the Consultant Neurologist Dr S. I need his email address please.

Matters will go before Ct of Protection if something is not done about the leave

In the meantime I look forward to your urgent attention.

To deprive leave with family is violation of Human Rights Art 8

Yours sincerely

Susan A Bevis Mother and POA

Because I was busy writing a letter I hardly spoke a word in that building.

I would like to share the footage of my behaviour so that everyone on X can comment and I am all for honesty and transparency and respect the views of people who might read my blog and I am sure there are others who have come across such bullying. At least give me the footage which has of course been denied previously because there simply is not any.

I am supposed to write only to one email address only but because of the serious allegations of a criminal nature I felt this had to go to the very top as the person who wrote this could not even be bothered to sign the letter or put a reference on it. This shows there is unaccountability and a bullying approach at the MH Administration Office Trust HQ not forgetting the Legal Team.

BUILDING UP A CRIMINAL PROFILE

Unsigned letter dated 20.10.2023 from Trust Headquarters unsigned by The Mental Health Act and Legal Team received on 25.10.23 threatening to call Police and a warning alleging “hostile, aggressive behaviour demanding immediate access to a senior manager all witnessed by an accompanying friend. GDPR request submitted 26.10.2023.

Letter dated 6th June 2023 from Hayley Sandford Senior Records Officer where I requested CCTV footage from Ash Villa. I will feature below selected paragraphs as per below:

“I write in response to your correspondence relating to CCTV footage at Ash Villa. “Your visit to Ash Villa on 3 April 2022 had been authorised by the Consultant who emailed you. You are right you were entitled to attend site that day”. “Unfortunately this had not been communicated to ward staff causing them to challenge your visit. We will take steps to ensure this does not happen again.” “The ward was in Covid outbreak and you could not be entered onto the ward. It was agreed a discussion through the window was a reasonable compromise made on the basis none of the patients were returning a positive result. Staff continued to make their rounds completing observation sheets on other patients whilst monitoring to ensure no items which could pose a risk to patients were passed through the window. I understand Police were called to site when you became verbally hostile towards staff and would not leave site when requested. No allegation of assault was made to police. Police make their own judgement as to how may police attend reported concerns. Accounts of events on 3 April differ greatly provided by our employees. I was asked to leave but wanted to hand things I had bought and she was entitled to ground leave yet this was refused. I have driven 1.5 hours and had another 1.5 hours to drive back home and all I wanted was to ensure she had got the things I brought which would have taken 5 minutes, hence them taking her to the front window so I could witness this. The RC said they were wrong so Police time wasted.

Data Subject Access Requests – I note you have mentioned GDPR Right of Access which entitles an individual or an otherwise authorised third party to a copy of their personal data alongside information relating to how their personal data is processed. This right applies to the individual not to personal data of any third parties. I had asked for footage of me standing outside Ash Villa underneath the CCTV camera. There was no-one else around just me alone so that is no excuse and having operated the cameras there would have been good footage including the voice of a member of staff shouting “you have just assaulted a member of staff Ms Bevis”. Elizabeth was witness to this and was very distressed. I also had another independent witness.

CCTV footage – I have arranged for all CCTV footage (inclusive of the camera you took a photograph of) from Ash Villa on 3 April to be downloaded for reviewed. The days’ footage has been reviewed and shows no meaningful footage of any incident.

Telephone logs – our telephone calls are not recorded for me to provide you with a copy but we could never guarantee we would provided you with a copy if they were, due to third party personal data which would be captured within it. This extends to providing you with call logs from Ash Villa.

The Trust cannot provide you with the information you have requested due to third party rights or lack of footage. This has been reviewed to be as our Senior Records Officer Alison Bartle as Ward Manager of Ash Villa and our Team Coordinator within Information Governance and Records Management.

COMPLAINT REF FOR/23/2503 14.04.2023

“Barnet, Enfield & Haringey MH NHS Trust would determine what health and social care provision is appropriate. We are aware Enfield have been involving you within the Care Act and 117 Assessment.

This is currently going on behind my back right now according to Elizabeth who says she was feeling to ill to discuss with her advocate from Voiceability yesterday. There was never any “care” under Enfield or provisions that were needed for the independent flat which is why I moved hoping to at least provide the right environment and an independent home that had the right

There was a period in 2022 when Elizabeth was exhibiting significant distress following excessive phone calls from yourself and her phone was stored in staff office for periods during the day. Staff maintained logs of her phone use which included details of when she declined to use it.

We paid a contract on the phone. They took the phone away and put it in the office and noone in the family could get through. Was given only 1 point of contact and told not to phone the office as phone would be put down. That point of contact was the Carer’s Champion who was not always around. Around this time Elizabeth had been constantly calling the Police in desperation and I have all the details of the many calls she made for help during that time. That is the real reason they took the phone away.

As for the MRI – none of the consultants wanted her to have it “no clinical indication for further imaging. They were reliant on a scan marked “normal” in 2015 however I have had the scans done privately following the discharge note stating “abnormal findings on a scan. It is only now after 2 years finally they are taking seriously the fact that Elizabeth has as Neurological condition they are treating as a mental illness with antipsychotics. She has only just been referred to a Consultant Neurologist because of the evidence produced. “It would be difficult to differentiate autism from someone with chronic schizophrenia” – so in that case what is the real diagnosis?? I have proven there is something else wrong and I am just a mother to prove this whilst a string of doctors have stood in the way and could not be bothered to look for reasons why the discharge note said “abnormal findings on a scan pointing to CNS”. Again they got it wrong when they say borderline IQ – No! Huntercombe got it right there “high functioning aspergers”

Letter from Alison Bartle Ward Manager via lpft.PALS@nhs.net sent special delivery on 10.03.22 AIP/AB/LJCA “I am referring specifically to your rudeness o the phones and rudeness and intimidation whilst on site at Ash Villa” “I must ask you to stop any rudeness or intimidating behaviour in the future.” “staff have been instructed to terminate calls when caller is rude or abusive and to call the Police if they consider breech of peace or other such behaviours in the grounds of Ash Villa. Planned outings will have to be pre-approved and agreed by the RC. Yes they always were but because of lack of communication was told to go away by staff on arrival despite ground leave granted outside so even if there was short staffing on the ward just to come out for 5 minutes to collect Birthday presents or to collect money and possessions surely should not have been such a big deal. Visits to ward can be planned and limited to one hour due to Covid visiting restrictions and should be booked in advance. If your behaviour is rude or intimidating you will be asked to leave. I do hope you acknowledge it and manage your behaviours better in the future. PATIENT EXPERIENCE TEAM LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST UNIT 9 THE POINT LIONS WAY SLEAFORD LINCS NG34 8GG

LETTER FROM DAVID FROM INSPECTION TEAM OF CQC WHOM HE REFERS TO AS A “BUSINESS”

From: HSCA_Compliance <hsca_compliance@cqc.org.uk>
Sent: Thursday, July 28, 2022 3:40:29 PM
To: susanb255@outlook.com <susanb255@outlook.com>
Subject: FAO Susan Bevis – Correspondence – Ash Villa – ENQ1-13580144066 – DB

Dear Mrs Bevis,

Please find attached your Correspondence regarding Ash Villa. If you have any queries please do not hesitate to contact us.

Mrs Susan Bevis Delivered by email Ref: ENQ1-13580144066 28 July 2022   Dear Mrs Bevis I am writing to inform you the frequency, duration and nature of your communications has caused disruption to our business and distress for CQC team colleagues. Notably David refers to the CQC as a “business” and so this is how the CQC view requests for them to intervene in concerns and how they dismiss them.  Surely that is what they are assigned to do and that is investigate concerns. Between January 2022 and June 2022you raised a significant number of enquiries with the Care Quality Commission regarding the care of your daughter Miss EB staying at Ash Villa a rehabilitation ward within Lincolnshire Partnership NHS Foundation Trust (LPFT). The Call handlers who you have contacted have passed on your concerns to the Inspector for review; in turn the Inspector has passed your concerns to the trust. In many cases the trust were already aware as you have copied them and were already dealing with your concerns. The information you have shared is repetitive and similar information to that you sent to us previously. Our Inspector has liaised extensively with the trust and is satisfied the service have taken steps to address your concerns.    The calls did not come from just myself but from Elizabeth herself and others. We understand Miss EB consistently says that she does not want staff to share information about her care and treatment with yourself or any concerned parties. Miss EB does share information herself with you. The trust have set up an identified single point of access at Ash Villa; and a dedicated email box with the trust. The CQC cannot investigate your individual concerns further. We are sorry that we were unable to assist you further on this matter, and now consider it closed.  You can however contact The Parliamentary and Health Service Ombudsman who will be able to offer advice and assistance to you regarding your complaint. Their contact details for ease are on the phone via 0345 015 4033, or www.ombudsman.org.uk/making-complaint. In view of the previous communications between yourself and CQC, if you do need to contact CQC in the future, we ask that you make any communications in writing initially by letter. If you do telephone the CQC there will be a voicemail service where you will be able to leave your concerns via voicemail. Based on the new information shared we will decide whether to respond directly to you, or instead may approach the relevant healthcare provider. This decision will be as appropriate to follow up on the information shared.  I will not be bothering.  The only time the CQC respond effectively to facilities they rate as good is when abuse is revealed by TV programmes like Panorama.  Noone has signed the letter that David has sent notably. Yours sincerely,  Inspection Team (completely unsigned)

There is one other letter I think from Pals listing four occasions where my “behaviour” has been reported as “hostile, intimidating, aggressive – you name it. There would have been ample CCTV coverage and evidence from where I was standing but absolutely nothing has been supplied as evidence therefore I have requested the defamatory comments to be taken out of file papers and records and it is essential for anyone else who is targeted to ask for evidence under GDPR Rules. If no evidence can be provided to back up claims then they should request removal of such comments from records. In actual fact it is the Trust who is causing intimidation and threats and have used Police on two occasions wasting their time in order to build up a profile that could amount to criminal prosecution on my part which is why I am recording everything in anticipation for any future legal actions on their part. It is truly horrible to have to go through this and there has been complete justification of my concerns all along when it comes to Elizabeth’s care and treatment. Several letters have been completely unsigned whilst certain Trust personnel hide and this is very wrong indeed.

Statutory requests for information made under access to information legislation such as the GDPR and the Freedom of Information Act 2000 should be sent to: information.access@cqc.org.uk

Kind Regards

David

Inspection Support Team Co-Ordinator

For information about CQC, including contact details, information about how we use and protect personal data, and how to request information from us, go to https://www.cqc.org.uk/contact-us

Letter attachment below dated 28 July 2022

Care Quality CommissionCitygateGallowgateNewcastle upon TyneNE1 4PA Telephone: 03000 616161 http://www.cqc.org.uk

 

“Our inspector has liaised extensively with the trust and is satisfied the service have taken steps to address your concerns. We understand EB does not wish to share information with you. CQC cannot investigate individual concerns further. Consider it closed. You can contact the PHSO. IN VIEW OF PREVIOUS CORRESPONDENCE IF YOU DO NEED TO CONTACT CQC IN FUTURE MAKE COMMUNICATIONS IN WRITING INITISALLY. IF YOU DO TELEPLHOLNE THERE WILL BE A VOICEMAIL SERVICE AND WE WILL DECIDE WHETHER TO RESPOND DIRECTLY.

I

After being cut out of two ward rounds via Microsoft Teams recently I asked if I could come in person to ward round today on Castle Ward, Peter Hodgkinson Centre, Lincoln County Hospital. I was hoping to tie this in with a visit to see Elizabeth afterwards who was being allowed out for two hours off hospital grounds unescorted for the first time in a long while since Ash Villa, Sleaford. Most of these doctors below have denied any S17 leave. We were both looking forward to going back to the Carlton Shopping Centre in Lincoln like we did last week as the visit was a great success but everything has suddenly changed. I am no longer able to take her out. I am no longer able to see my daughter as it stands and all this under a Trust rated “Good” by the CQC.

Dr Waqqas KHOKHAR is Responsible Clinician to Elizabeth. There were two others that came into the visitor’s room (Nurse PT) , Carer’s Champion was present – the other doctor was Dr Lake. Four people and just me. Dr Khokhar told Elizabeth she would have to be seen separately for ward round and I asked why she could not be included in this meeting because after all Elizabeth feels very uncomfortable attending meetings where so many people are included and some on a screen. I am not sure she is being represented by any advocate at such meetings and wishes not to attend. The meeting had started without Elizabeth present. I was told behind her back by Dr Khokhar that I could no longer take Elizabeth out. I was told the reason for this was because he felt I was a “bad influence” on Elizabeth but would not emphasise further. Elizabeth came to join us and Dr Khokhar was pressurising her to answer his questions. Elizabeth would say things like “I’m not answering you“. She clearly felt uncomfortable and he persistently asked “why” and she clearly did not like being put on the spot and it was awful to watch. Elizabeth claims to be autistic but they just will not listen however on the care plan it now says autism instead of personality disorder.

I proceeded to ask a few questions. I was cut short of everything I wanted to ask. When I asked about the recent Tribunal that no-one from family was invited to I was told what I already knew. There does not seem to be any plan in place to ever release Elizabeth and to deprive S17 seems to be LPFT’s protocol. I know I am not alone in this kind of treatment throughout the UK this is going on to others. A team of strangers who have stated I am not suitable as a mother in not so many words but behind your back they go to town and write such nasty things about you and present this to courts in evidence against you. Anyway I have no idea whether Dr Khokhar is demanding this ban to be permanent and once again we are back to square 1 like at Ash Villa. All we wanted was to go back to the Carlton Centre and have a coffee. I could see Elizabeth was very upset. Our lives have been turned upside down since coming to Lincolnshire. We did not expect treatment like this and I purposely did not want to challenge anything to begin with and get on the wrong side of people in a new area where we wanted to make a fresh start. However now I feel I have lost everything and my life has been ruined by people who are supposed to be in a caring profession who have to obey orders from Trust Office Headquarters. I told Elizabeth “do not react please” because I am forced now to look into the legal route as this seems the only way because surely this is in breach of HR law.

I went to the Trust Office accompanied by a friend. Noone wanted to see me at their offices below:

Trust Headquarters. St George’s Hospital, Long Leys Road, Lincoln, Lincolnshire, LN1 1FS. 01522 309 202 ·

I just wrote a letter and asked for specific reasons as to why I could no longer visit/take my daughter out and spend two hours of quality time with her in the fresh air.

I feel I am being punished for speaking out for revealing the truth because I know something that happened at Ash Villa. There was an accident no-one was informed about in the seclusion room and I know all about it. I feel that is why I am being bullied because I had asked for Neurologist appointments to resume and for other pathological tests to be carried out.

Elizabeth is being frequently rapidly injected and one of the questions Dr Khokhar threw in her face was how she wanted to be treated when she had an ‘episode’. We, her family know the answer to that and that is just to be left alone. Her Advance Declaration explains. Not that this would make any different to LPFT. The Advance Declaration clearly sets out how she wants to be treated and says “no invasive psychiatric treatment” but what they are doing is pushing her up against a wall and injecting her and at times there has been no reason for doing this and another nurse from Ash Villa confirmed this goes on all the time because it is “for the convenience of nursing staff”.

Since Elizabeth was rushed to A&E she has just been referred to a “Neurologist” but no-one would give his name. So a “Neurologist” has been onto Castle Ward called a Dr Solinas. Today everyone present at the meeting would not give the name of the Neurologist or contact details. I asked where he is based so I was told Lincolnshire United Hospital Trust – the main hospital. I was keen for Elizabeth to see a Consultant Neurologist because it has come to light that there was a really bad accident at Ash Villa in the Seclusion Room that no-one has told us anything about and we knew she was attacked and hit around the head in a hospital in the previous area.

Elizabeth advised clearly and her story does not change. She told us that she felt dizzy because no doubt she had been injected and that she fell hitting her head on the hard floor in the seclusion room. Well this might well explain all the “episodes”. This is probably why Ash Villa did not want her to have a Neurologist appointment or have an MRI scan done.

Here are the Doctors who have refused proper pathological tests and leave apart from 1 regarding leave only and no wonder why because the images on the scan reveal lesions, cavernoma and inflammation and they are treating with the following and ignoring her physical health:

500mg Clopixol fortnightly plus Procyclydine which is being injected regularly 5mg breakfast, 10mg lunch and 10mg tea. I would not be at all surprised if covert medication is given. What I was worried about was all the frequent rapid tranquilisations and so I asked for their CP11 protocol and rapid tranquilisation log. Of course no-one wants me to see this. I asked again for this at the Trust Offices but being a caring parent I feel that it is not the right approach and Elizabeth said she wants to be left alone.

Dr Ismail from Charlesworth Ward

Dr Shahpasandy who refused his own research into Limbic System

Dr Ismail yet again

Dr Kumar

Dr Islam

Dr Suleman

Dr Greenall

Dr Memons (actually I liked Dr Memons from Cygnet because he did not talk down to me in a patronising manner).

Dr Mohammed

Dr Khokhar

I felt today’s ward round was a complete disaster and the result was like going back to square 1. I was made to feel like absolutely nothing and how do patients feel when communicated like I experienced today.

Worse was to come I had arranged to visit Elizabeth in the evening as because of the ward round and not being allowed out I hardly had any time with her. Also it was totally degrading to be told first of all my visits must be supervised once again and then refused visits. This is a violation of human rights and bullying. Then on return to the ward two nurses came to the door. They said they had been instructed by Trust office not to allow me on the ward and so I have been banned from visiting my daughter on Castle Ward Peter Hodgkinson Centre, Lincoln County Hospital.

I also have only this email address where I can write: lpft.careconcerns@nhs.net. I was told not to expect any replies. I was accompanied by a friend – there were a group of three visiting someone else on the ward who were allowed on. Elizabeth came to the door. All I could see was her face smiling through the glass, witnessed by my friend. Leading up to the visit she had been texting me. looking forward to seeing me and meeting my friend for the first time. I brought her dinner I would have provided if she was allowed out because all they get is a sandwich in the evening but nurses would not accept this on the ward. I was then told to stay away from the glass door where Elizabeth was peering through and told me that I was upsetting her and we were told to leave the premises.

There are Carer’s Representatives working for all different wards who are supposed to give you the impression that you are being looked after in your caring role. It is very clear who they are working for in my opinion. I spent half an hour waiting to be let into the last ward round. I clearly was not welcome and it was totally deliberate I was cut out and no phone call or any kind of apology.

The feeling of losing your relative, being denied contact is dreadful and the greatest punishment. I cant describe that feeling and to think this is how the NHS treat people and I feel this is done in defense when something has gone wrong such as the accident and denial of proper pathological tests for physical health for so very long as opposed to the huge dosage of psychiatric drugs with Procyclydine forced upon her by injections. Not one has taken a bit of notice of the P450 liver enzyme tests and Elizabeth mentioned this today.

All I wanted was to share images with the Neurologist Dr Solinas but was refused contact details.

I know I am not alone in this situation as I am in touch with several others who are deprived of contact with their relatives.

My only hope is that new legislation will be passed soon as to deprive contact with family and treat a vulnerable person in the most restrictive manner is a violation of human rights.

https://www.gov.uk/government/news/government-to-legally-make-visiting-a-part-of-care

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.

Since moving from London to Lincolnshire it has been a disaster. No-one is giving any answers about the discharge note that points only to physical health. Because of the way scans have been refused and Neurologist appointments cancelled I decided to book a private scan as I was quite suspicious. Elizabeth is on a very high dosage of clopixol depot administered fortnightly and on top of that they are now giving procyclidine for Parkinsons off label. She constantly says she does not feel well and that is understandable as she is subject to constant rapid tranquilisations. Imagine being pinned up against a wall and some hospitals such as Elysium give face down restraint which is life threatening.

When I turned up for an important meeting on Monday 2nd October I was told an emergency ambulance had been called again. It was 2.00 pm when I came onto the ward. There were about 5 people in her bedroom. I did not pick up the message covid was on the ward but too late by this time. I was for the first time in Elizabeth’s room and there were five others including the RC. As witnessed myself on one previous occasion Elizabeth was in an inconsolable state. Rolling on and off the bed, shaking with tremors all over her body and her skin felt cold and clammy. The first thing they do is inject her known as “rapid tranquilisation” (a chemical straightjacket). They were waiting for an ambulance to take her to A&E at Lincoln County Hospital. I had to go into the meeting where I met with two Directors of Nursing for the Trust and ICB. It was around about 5.00 pm when the meeting ended and I went over to A&E and Elizabeth was still in an ongoing state of distress which reminded me of one other occasion when she had Akathisia. I thought it might be NMS she was suffering. It could not have been a worse time to be in A&E with a strike on. There were two healthcare assistants with Elizabeth but when they had to go back to the ward two men took over standing just outside the room. It was not until about 7.00 pm that the main consultant came to see Elizabeth. It took her until 7.30pm to calm down and when I have asked she said she could hardly remember anything other than being strapped to a bed in the ambulance. The episodes I had hoped had subsided but were a frequent occurrence at previous hospital Ash Villa and at Cygnet Durham which always resulted in rapid tranquilisation. Pulse rate high at 138 /157. You could not speak or communicate with Elizabeth during the episode. After briefly seeing the Consultant she was then sent back to the ward in a wheelchair. It was quite upsetting as this has been going on a while now and I do not like the fact she is being injected as it is life threatening. Never before coming to Lincolnshire did she have these episodes but we have both been treated like criminals.

I have scientific data that the clinicians are ignoring.  I have two papers (from impeccable sources) of major significance in showing that a non-psychiatric intervention may relieve some of the pathophysiological causes of the psychosis they call schizophrenia.  If interventions were targeted at immune dysfunctions and inflammatory markers a whole new approach could be taken that did not involve a lifetime of incarceration and neuroleptic drugging.

An early intervention targeted at these two physiological causes/contributors to psychosis might eliminate most patients from this hideous ritual that has been going on for many decades.

It is eminently probable that Elizabeth, when she first presented with psychotic symptoms had an injury or infection causing inflammation, that had it been properly treated would have been fully recovered from.

That clinicians will not listen to this is unfathomable.  Literally millions of people may have been subjected to psycho pharmaceutical treatment unnecessarily resulting in untold levels of suffering for them and their families. How shocking this is.

When the drug companies got control of our health service the future became very bleak for patients. Drug companies don’t want cures they want sales.  Keeping patients on drugs for life makes them fortunes.  Cured well patients do not generate profits for drug companies and private sector mental health provision making fortunes from the NHS.    

The orthodox medical obsession with so called chemical imbalances ‘treated’ with neuroleptics completely blocks out numerous pathophysiological contributing factors and possibly even causes of psychosis.  It is virtually medieval in its approach and shares more in common with cult beliefs than with science.  

Ignoring pathophysiological symptoms and markers is utterly absurd in any diagnostic system let alone the potential for consequences of ignoring them when administering medication. 

Refusing Elizabeth and other patients access to properly conducted tests and analysis is a scandal on a huge scale.  But of course they find it much easier to label people with catch-all and non specific stigmatising terms like schizophrenia.   

It is entirely possible that Elizabeth suffered a decrease in cerebral glucose metabolism at the time she was originally wrongly diagnosed with schizophrenia. 

That has been shown in the medial temporal lobe and increases have been seen in the subgenual anterior cingulate cortex in conjunction with reductions in mesolimbic connectivity, following an induced inflammatory response.  Trauma can induce this inflammatory response.

It is further possible that millions of young people have been so diagnosed because the NHS is obsessed with focussing solely on the psychiatric symptoms while positively avoiding pathophysiological and trauma induced causes of psychosis.

The mesolimbic system is precisely where dopaminergic activity is taking place and inflammation will obviously interfere with that, causing manifestations of psychosis.  If the inflammation had been addressed with anti-inflammatory drugs at onset a lifetime of psychosis and consequent drugging could have been avoided.

I suspect that Elizabeth will express C-reactive proteins and interleukin 6, just as she was shown to be a poor metaboliser.  Both of these are a result of her genotype and her treatment should have been based on these.  Undoubtedly the NHS will refuse to test her for these markers.

Instead they cling on to the outdated and hideous system of labelling people with schizophrenia and dosing them with anti-psychotic medication.   

If any of the scans show these effects it would be seriously negligent not to investigate them further.  At the very least anti-inflammatory drugs should be used to reduce the inflammation.  Even over the counter NSAIDS would have some effect on this.

Steroids are used in more serious cases.  

It is well established that brain inflammation is caused by neuroleptics.  The medical literature, including top high impact journals is full of studies.    Some of the drug companies claim that the drugs actually reduce inflammation but the evidence here is highly questionable.

If grey and white matter is inflamed it will interfere with the brain’s system of removing waste proteins (Glymphatic system) That will cause nerve atrophy by blocking neural signalling and depositing protein waste in the form of amyloid beta plaques and Tau tangles both inside the cell and between cells in the synapse.  That causes failing cognition, memory and cell death in the brain.  Inflammation in the brain can breach the blood brain barrier endothelial cells allowing in both toxins and pathogens that would otherwise be stopped by the BBB.  That can cause infections and toxicity leading to brain damage.  If the doctors ignore that they are either negligent or stupid or both.   

As the sulcus closes, the Cerebrospinal Fluid is pushed out of the sulcus. Since the CSF is part of the Glymphatic system responsible for clearing the brain of damaged protein fragments these can build up and cause atrophy in grey matter.  Amyloid beta proteins and tau protein tangles cause brain atrophy leading to neurodegenerative disorders. 

•       In the human body waste matter is cleared from the system to lymph nodes

•       Where proteins are filtered out and destroyed

•       The more active the organ, the more vessels there are to evacuate the waste proteins 

•       Except in the most active organ of all, the Brain.

•       The brain has no lymphatic vessels

•       It was originally believed that was products in the brain were destroyed in situ

•       Accumulating proteins such as Aβ and tau are identified as major factors in Alzheimer’s Disease

•       Nedergaard’s research observed that the brain has its own mechanism for clearing out waste 

•       Ten years after Nedergaad’s work this is now known as the Glymphatic System

•       Cerebrospinal fluid is a liquid that acts as a cushion protecting the brain from direct contact with the skull.   Closed sulci push CSF away possibly leading to less cushioning 

•       The fluid has been observed ‘washing’ through the brain induced by the pulsing of arteries as the heart beats

•       The fluid was picking up waste proteins and transporting it to the lymph nodes for destruction 

•       This involves brain cells known as the glia

•       Giving a new avenue for potential treatments by improving the flow of glymphatic fluid

•       A normally functioning brain will flush out Aβ and tau proteins

•       As a person gets older this process becomes less efficient

•       Leaving potentially harmful proteins behind where they may accumulate

•       Accumulating Aβ proteins can reach a tipping point causing tau to spread throughout the brain

•       As the accumulation increase the axons and synapses are compromised

•       And cognitive function, especially memory declines

•       Unlike the lymph system the glymphatic system only operates during sleep

•       The system is disabled during waking hours 

•       It is most active during deep sleep, initiated by slow-brain wave activity

•       Lack of sleep in early life as associated with increased risk of Alzheimer’s  

•       Aβ can increase noticeably even following short episodes of sleep deprivation

Before leaving I wanted to pick up the Rapid Tranquilisation log from Castle Ward but this was not granted so I wrote an email to Sarah Connery CEO:

“I also look forward to the CP11 on RT for LPFT and logs of RT during and thereafter from Ash Villa.”

I thought I might as well get the Policy document CP11 on Rapid tranquilisation as I had been reading very carefully another Trust’s Policy protocol document CP11. I then decided to ask for all the rapid tranquilisation logs to date. I would recommend all carers whose relatives are subject to rapid tranquilisation get the Policy document of their Trust CP11. I could not find this so I have had to ask for it.

Elizabeth is being given drugs that disrupt sleep and this can result in a low B/O ratio during the night. Dangerously low blood oxygen will result in brain damage and organ damage.

In the short term it will seriously impact on cognitive function and that should have been taken into account when they conducted the capacity assessment.  Patients treated for sleep problems with CBT-1 experience increased cognitive ability while those treated with sedatives or anxiolytics such as benzos experience their cognitive function deteriorating further.

  

Blood Oxygen Level	Interpretation
96 to 100%	Normal range
93 to 95%	Borderline low
89 to 92%	Low
88% or lower	Dangerously low

The patient should be examined 30 minutes after IM is administered. 

If respiratory rate falls by 10 points following IM administration of drugs or the blood oxygen levels (SpO₂) fall below 90% the patient should be given oxygen. 

Symptoms of mild cerebral hypoxia include:

• Change in attention (inattentiveness)
• Poor judgment
• Speech disorder
• Uncoordinated movement

Brain cells are very sensitive to a lack of oxygen. Some brain cells start dying less than 5 minutes after their oxygen supply disappears. As a result, brain hypoxia can rapidly cause severe brain damage or death.

Lack of sleep can cause brain inflammation and where that occurs the drug metabolism will be affected adversely.  

It is a failing of mental health providers that they do not pay sufficient (if any) attention to patient sleep.  Conditions on wards are not conducive to proper sleep with lights on and severe disruption throughout the night, including forced medication. 

Doping patients up with Benzodiazepines does not provide the proper circadian sleep they require and contributes to brain dysfunctions exacerbating underlying medical conditions. 

High levels of neutrophils have been associated with schizophrenia and there are methods of treating them as you will see below.  I consider it highly unlikely that Elizabeth has been tested for neutrophil count so that is another test she might need.

I have the paper on neutrophils and schizophrenia.

Plasma levels of systemic inflammatory markers (fibrinogen, albumin, white blood cell count, von Willebrand factor, and Factor VIII) need assessing.

Plasma fibrinogen is considered as a positive mediator between mental stress and cardiovascular disease because it is an acute-phase protein released in response to mental stress and a coagulation factor.

Mental stress can increase fibrinogen and increase the risk of cardiac disease via upregulated coagulation (Blood clots)

This assessment can be done by a routine blood test.  

On a positive note after 2 years finally we have this meeting. The CTR originally refused is now being granted. Because I dispute every capacity assessment done for court purposes they offered to arrange an independent one. I believe they should always be done independently however I am not sure I can trust them to choose and I would want to choose in the circumstances. I did say was it necessary because I needed to see two other capacity assessments done by completely independent assessors of the CoP.

I mentioned about leave. Every change of doctor meant things either were ignored or went back to scratch. A HCA told me that S17 leave was granted meaning escorted ground leave but I disputed that this was leave. Leave is when someone is granted time with their families and that has not happened in a long while.

Ward Round took place on Wednesday on Microsoft Teams and went better than the last one I could not get into. The RC kept saying “you have schizophrenia” Elizabeth just sat there – normally she would say “no I am autistic”. However, I was the one who spoke up as I had private scans done when they were refused by a former doctor of LPFT who even carried out research into the Limbic System. I said “my daughter’s condition is physical” I mentioned she needed to see a Neurologist, an Endocrinologist and an Immunologist. He said about a referral to a Neurologist but because so many appointments were cancelled and scans refused I am not leaving anything to chance. I have contacted today a leading expert in Neurology as I want a fair examination and not by a neurologist who may also be a psychiatrist as even with the evidence of the scans Elizabeth would not be treated fairly. Inflammation of the brain requires a very different kind of treatment to what Elizabeth is having at the moment. It is hard to trust anyone in the circumstances as noone likes to be proved wrong and from what I can see there has been nothing but attempts to ignore or brush aside.

Take the Sebaceous cyst for example on Elizabeth’s head. I as a mother was not convinced when they said it was benign.

A Sebaceous cyst is well associated with the long-term use of neuroleptic medications.

That also needs a medical appraisal done.  This is not simply a cosmetic ADR but indicates a potential endocrine disorder linked to her inability to metabolise drugs.

Incidentally this has also been known about for years.  Sebaceous cysts are NOT benign.  For one thing they may mask subdural lesions and inflammation making them difficult to define.

Just as I thought! – every time I have told the doctors – so many of them that I have had endocrine tests done for Elizabeth and they have ignored this and so I asked at ward round for an appointment/referral as I have already proven endocrine dysfunction. In fact it was Dr Moncrieff who recommended seeing an Endocrinologist and not any one of the many doctors involved in Elizabeth’s case

Cavernomas are vascular malformations that have been associated with psychosis as well, especially in the setting of haemorrhagic transformation.

That dark patch on Elizabeth’s temporal lobe looks suspiciously like one.

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 would be expected 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. It appears they are often overlooked in favour of psychiatric diagnosis.

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.

The attached article is about a young man presenting with psychosis and aggression.  He was found to have two cavernomas and you can see them on the scans in the article.

It is possible that the reason why cavernomas are relatively rare is that the misdiagnosis of schizophrenia is masking the actual incidence in the population.  Since psychiatrists are so reluctant to allow patients to have brain scans many of these may be going undetected.

Clearly proper examination by a neurologist to confirm it is indeed a cavernoma or any other type of lesion is needed. 

Neuroleptic medication will not treat these lesions and could potentially make them worse since it can cause inflammation.  

Limbic encephalitis is an inflammatory process mediated by antibodies that typically involve the limbic system, although it can also affect the white matter in other areas of the brain, the brainstem, or the basal ganglia. It can have paraneoplastic or non-neoplastic origins, paraneoplastic encephalitis showing little response to immunotherapy⁽⁴⁾. Clinical findings range from alterations in short-term memory to alterations in mental state and can include psychiatric symptoms.

I have placed below a brain scan done roughly in the same position of that of Elizabeth’s which I refer to as a comparator

Note the similarities between the brain scan on the right of the picture with Elizabeth’s on the left.  Although the comparator picture is taken from higher up in the skull at eye level and Elizabeth’s is in the area of the nasal sinuses below the eyes you will see the same pattern on the left.  The comparator shows a cavernoma, a definite lesion. 

On Elizabeth’s scan you can see the odd linear anomaly that does not show on the comparator but the dark patch on Elizabeth’s scan is directly below the position of the cavernoma on the comparator. 

I have just been reading to Elizabeth this blog for her approval and she wishes to let everyone know that she is “slowly recovering”. The thing she enjoyed most today was making pizzas. Oh and another good thing is that I have been granted two hours leave that does not have to be confined to hospital and its grounds. That is good news as Lincoln is a very nice place and eventually I would like to show Elizabeth some of the sights especially the Cathedral.