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.

Regulation 20 requires the healthcare provider (in this case LPFT) to notify patients and their families of any unintended consequences caused by a regulated activity such as rapid tranquilisation.

If QT prolongation or reduced oxygen saturation below 90% is discovered the healthcare provider must inform the patient and their relatives that this unintended consequence has occurred. This is known as “duty of candour”

Failure to comply with the HSCA 2008 is a fitness to practice/hold office issue.

Zuclopenthixol acetate should never be prescribed for the following Appendix 2: Physical Health Monitoring Record

Patients who accept oral medication to treat agitation or psychosis eg antipsychotics. Patients who are neuroleptic naive.

Zuclopenthixol Acetate Physical Health Monitoring Form:

Patients who are sensitive to extrapyramidal symptoms (EPS)

Patients who are pregnant

Patients who are unconscious

Patients who have advanced hepatic or renal impairment

Patients with cardiac disease eg QT prolongation, recent MI, heart failure, cardiac arrhythmia, bradycardia (see SPC for further information)

Patients with history of seizures or epilepsy.

Appropriate S62 MHA paperwork should be completed to enable legal administration of zuclopenthixol acetate and other prescribed medications eg procyclidine, benzodiazepines. Unfortunately I am cut out of everything and I do not think from what Elizabeth has said that she has been given informed consent.

Rapid Tranquilisations

How many other family members have not been informed of frequent rapid tranquilisations involving restraint likewise. At Cygnet this seemed to be quite a frequent occurrence too.  Therefore a record of all this surely needs to be given to the family as per the above legislation.

Legal Duties: All staff should be aware of the legal framework that authorises the use of these interventions.  The guidance of the Mental Health Act Code of Practice (chapter 19) and the· Mental Capacity Act Code of Practice chapter 13 should be followed.  Any departures from the guidance should be clearly recorded and justified as· being in the service user’s best interest.

The problem is how can they say a treatment at enormous dosage is “best interest” when it leads to frequent rapid tranquilisation and no attempt is really looked at to explore pathological causes.

6.3.8 (LPFT) Guidelines for Medication Administration for Out of Area Patients Occasionally LPFT patients who have moved out of area may need medication both supplying and administering. There may also be patients who are not known to LPFT services that require medication whilst they are residing within Lincolnshire. The pathways for dealing with both of these circumstances can be found in Appendix 7.   Please supply Appendix 7. This I have requested.

Only medicines that are licensed in the UK may be prescribed, and only at doses listed in the British National Formulary (BNF) Occasionally a consultant may wish to use a medicine at a dose not listed in the BNF, or for an indication not covered by the terms of its UK licence, or use a medicine with no UK licence. In such cases the consultant MUST first complete an unlicensed medicine request form (Appendix 9) by completing this form the consultant accepts responsibility for all outcomes resulting from this use of the medicine. Pharmacy will NOT supply an unlicensed medicine, or a medicine being used outside the terms of its UK licence, or a medicine outside of BNF dosing recommendations unless the unlicensed medicines request form has first been completed. Where prescribing occurs outside of a UK licence of BNF dose limits, this will be highlighted to the relevant consultant (Appendix 9). So in that case why was Elizabeth told about being sent to London to put on a drug totally ineffective and not even licensed in this country and why is that allowed to go on? ie Clozapine IM injections.

Prescribing should be informed by evidenced based practice, local and national guidelines and formularies. Prescribing decisions should be made in reference to local policy; PACEF guidance and the Lincolnshire joint formulary.

Unlicensed Medicines / off label prescribing – see Appendix 9 for guidelines • Unlicensed medicines refer to a product that does not hold a UK marketing authorisation (product licence). • Off label prescribing is where medicines are prescribed outside of their licensed indications. • Consideration should be given to any obvious licensed medicines available to meet the patient’s need, there should be sufficient evidence base to support the prescribing and the Prescriber takes responsibility for any prescription that is unlicensed or off license use. Documenting the rationale clearly for the medicinal product choice.

Adverse Reaction Reporting • If a patient becomes aware of a severe or unexpected reaction to a prescribed medication the Prescriber should complete the Adverse Drug Reaction (ADR) reporting form or ‘yellow card scheme’. • The ADR must also be documented on the patient’s electronic notes, any prescription charts, and the GP informed. Informing Patients • Professionals must ensure that patients are aware they are being treated by a Prescriber and the scope and limitations of their prescribing. • If the patient is being cared for under a clinical management plan then the patient should be involved in the review of the plan. Well perhaps they can look thoroughly into the facts below:

Elizabeth has a large sebaceous cyst on her head.  This 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

Elizabeth needs monitoring for QT prolongation & blood oxygen saturation levels.  If oxygen sats fall below 90%, remedial action should state, “seek urgent medical review”.

Rapid tranquillisation is a regulated activity under  The Health and Social Care Act 2008 (Regulated Activities) Regulations 2014.

Yesterday i received a distressing text message from Elizabeth to say she was injected again and I found out that this injection was Procyclydine, a drug being prescribed “off label” under Lincolnshire Partnership Trust who have not once taken into consideration the fact that she is a poor/non metaboliser or bothered to look into pathological causes for non-metabolisation. None of the many drugs prescribed to Elizabeth have ever worked so why is this? So many doctors and even the CQC’s very own SOADs have neglected to look into reasons why and have sanctioned the raising of drugs to enormously high levels and on top recommend frequent transquilisations and as a parent I am quite frankly appalled by this reckless prescribing and concerned for my daughter’s life. This could lead to further injury to my daughter who I suspect is already injured because so many doctors have prescribed at high levels, ignored the P450 liver enzyume tests and gone down the route of polypharmacy even prescribing contra indicated drugs that are a harmful combination as is procyclidine and clopixol. I have had to turn to leading experts in the field of pharmacology who have great expertise as I am just a mother but every parent should have the right to be listened to and granted second completely independent opinions and so should vulnerable patients who complain of terrible side effects instead of being dismissed like rubbish. I could not sleep tonight as so concerned for my daughter’s wellbeing currently held on a never-ending section under Castle Ward, Lincolnshire County Hospital (LPFT) where they have introduced Parkinsons Drug Procyclydine on top of an already high dosage of clopixol and I bet they not told her anything about these drugs under the Informed Consent Act and treated her like a vegetable as they have carried out countless capacity assessments that are completely flawed which I have no choice but to challenge as when someone is deemed by a team of so many under an MDT to have no capacity this means they can control everything without any regard to the vulnerable person who is claiming she is being abused and I have been cut out of everything in the most dishonest manner – how many other parents who show concern have been treated in such a manner under MH.

Last night I phoned Castle Ward and spoke to a nurse called Elizabeth. I was told that if I had any concerns I needed to contact Dr Khochar, the RC. I then told her that I had written a letter to Dr Khochar and to the ward (hand delivered) during my visit last Friday about by my grave concerns on the introduction of Procyclidine on top of an already high dosage of Clopixol depot of 500mg per fortnight. I am quite frankly worried for her life right now and I would also urge other parents to look into prescribing of their relatives and find out the facts because it would appear under Lincolnshire Partnership Trust (just one example of many) the solution is to raise the drugs to a poor (or could it be completely non metaboliser) proven by scientific P450 liver enzyme tests that have now been adopted by the NHS and should be available to everyone so other parents need to ask why haven’t their sons and daughters had such tests done that recommend the lowest dosage quite rightly so. The problem is that the NHS are ignoring the scientific test results done on Elizabeth and I do not like that one bit especially since that could lead to serious injury for which I want there to be full accountability. I cannot believe their arrogance – I have a meeting coming up with those at the top of the Trust on 2nd October. I have had a short email trying to reassure me they are doing everything possible for good but I am far from reassured as I prefer to turn to leading experts in pharmacology.

I was asked last night what I knew about the drug Procyclidine and so I told Elizabeth (the nurse concerned) this was a drug for Parkinsons – could this be the real reason why the drug is being prescribed? – could this be the Central nervous system condition mentioned on the discharge note from former area Enfield? There is a wall of silence every time I have asked this question. There seems to be some sort of cover- up as it is twice mentioned “abnormal findings on scan”. This is being played down and so is the fact that since the Clopixol has been raised to 500mg a fortnight Elizabeth has been complaining about having difficulty in walking and asking me to bring in walking aids because she is struggling. I am fed up with the feeble playing down by members of staff of the fact Elizabeth has told me more than once she feels unstable on her feet and feels she is going to fall. This was not a matter of concern prior to the dosage of clopixol being raised to 500mg a fortnight. I am most certainly not reassured by anything I am told by LPFT to play matters down. If it is not correct that the Procyclidine is being prescribed for Parkinsons then why is it being prescribed? could it be that the Clopixol has been raised to high level and causing terrible side effects affecting her ability to walk etc. What is this …….torture springs to mind! Elizabeth, the nurse on duty tonight, then commented she could not speak to me or give me any information as I had asked for the amount of the Procyclidine prescribed. She said that she could not speak any more to me – that I could be anyone. The fact is when you contact a bank you have to verify who you are but at least you get dealt with and listened to – this does not apply to any concerned parent contacting a ward under the NHS MH. If there was openness and transparency there would have been no need for my call last night out of concern or for me to be writing this blog. It is all about proper communication which seems to be non-existent under LPFT apart from 2 carers leads. It is a weekend so I was not expecting a solution immediately upon my call but my call is out of sheer concern for my daughter’s wellbeing and at first upon moving I sat back and did nothing as I did not want to start off on the wrong foot but after 2 years and no improvement I now want some answers and there is no way you as a parent /carer should be dismissed. She was not even sectioned before so Elizabeth has been “stolen” – taken away and incarcerated forever by way of stealth. It is shameful the way this has been achieved and not about care at all. If the right care and environment were provided then I along with many other carers would not have a complaint and when you complain this is when you see the ugly side of the NHS and staff they employ who try to tarnish your character and make you out to be coercive, domineering, aggressive, intimidating and even mentally ill. It is cowardly to do this behind your back in file papers and reports for court purposes and this is why the court system needs to be open and transparent and as this is public funding despite the fact a vulnerable person is in the centre of this, if there is no transparency there is no justice and human rights are breached/violated. So Elizabeth and I have made the decision to go public as she is so distressed at the way she is being treated right now and SHE HAS FULL CAPACITY. This will be challenged in an open and honest court for everyone to see.

I had requested in my letter to Dr Khochar RC of Castle Ward Lincoln County Hospital to hear his reasons for the raised high dosage of clopixol per fortnight plus now procyclidine being injected on top and then on top of this God knows how many rapid tranquilisations. I have written to Dr Khochar about this and handed in a letter on Friday last. The current treatment sounds to me like a chemical straightjacket and not care. The injections hurt her and the treatment does not even work and is affecting her physical health. Not once has any psychological input been given under LPFT with the excuse “it is not the right time”. Well I think I think it most certainly is the right time to look into this reckless prescribing without any pathological investigation into the scientific tests already done indicating “poor or could it be completely non metabolising” inability on Elizabeth’s part. The P450 liver enzyme tests are now available to everyone on the NHS so why aren’t patients on MH wards being given these tests BEFORE prescribing if the drugs are not working instead of raising them to enormous levels which can cause serious injury.

There has also been threat of sending her to London for the purpose of Clozapine – another useless drug that gave serious side effects and in the injection form is NOT EVEN APPROVED under the UK so why on earth are some areas prescribing it? Why is this being allowed under the UK???

HERE ARE THE PATHOLOGICAL TEST DETAILS I AM REQUESTING:

“it is very important that Elizabeth is tested for Multi drug resistance associated protein 1 (MRP1). If these transport proteins are not correctly expressed she could have serious adverse effects caused by an inability to efflux drug substrates from brain tissue and this can lead to neurotoxicity, another organic brain disorder.  This is the transport protein for clopixol P-GTLY;COPROTEIN (P-gp).

If the above tests are carried out by second opinion doctors from NHS England or GMC I will be reassured. I cannot however trust the SOADs of the CQC having read the files and seen how these doctors can allow T3 prescribing to someone at enormous levels who is a POOR OR IS IT NON METABOLISER? Even I as just a mother would know this is wrong which is why I have turned to leading experts (pharmacologists) as there does not seem to be any such expertise on the wards or anyone who could care less about pathological causes and this needs to be changed to avoid serious injury to those vulnerable people and to reassure their caring parents and families properly instead of making feeble excuses.

EVERYONE SHOULD BE ASKING FOR MARTHA’S RULE. I have yet to find out if Lincolnshire is an area where this is adopted and if not my question would be Why not! and I will be contacting NHS England about this. MARTHA’S RULE MUST BE MANDATORY TO ALL TRUSTS!

Martha’s Rule: giving hospital patients and their families direct access to a second opinion

Richard Money-Kyrle

The parents of a teenage girl who died needlessly in hospital are calling for NHS patients to be given the right to an urgent second opinion, if they feel their concerns are not being taken seriously by medical staff.

Martha Mills died after multiple failures in the treatment of her deteriorating condition from sepsis following internal injuries in a cycling accident. A coroner’s inquest found that she could have survived if she had received better care, including timely transfer to the paediatric intensive care unit. During her time at King’s College Hospital, her parents repeatedly expressed their concerns about her condition, such as bleeding and a rash, and raised the possibility of septic shock, but their concerns were dismissed as being overly anxious.

The hospital has admitted that there were mistakes in Martha’s care. Investigators criticised the failure to move the child to the paediatric intensive care unit (ICU) sooner as indefensible, given her symptoms which included persistent fever, bleeding from her tubes, extremely low blood pressure and rash. If she had been moved to the ICU, special steps would have been taken to control the infection and she would have received specialist observation and treatment.

Martha’s mother recalls expressing her anxiety and trying to find ways to communicate to the hospital staff that something was not right as she became increasingly worried about her daughter’s condition. She found out later that her daughter’s risk of sepsis had been flagged by the nurses and her severe sepsis was known to her doctors who were perplexed by her condition but did not seek help from sepsis specialists within the same hospital. No sense of emergency or gravity was communicated to Martha’s mother until, after a seizure, Martha was finally admitted to intensive care at high risk of death.

Despite having done all that she could, Martha’s mother has spoken out about her feelings of regret for having trusted the clinicians against her own instincts. She wishes that she had felt able, “with no fear of being the target of ill-temper or condescension”, to ask for a second opinion from outside her daughter’s healthcare team when she became concerned about her deterioration. Instead, she was left with no choice but to accept what she was being told.

How would Martha’s Rule work?

Systems which allow hospital patients and their families to call directly for a second opinion (escalation) from a separate team of clinicians if they feel they are not being heard or receiving a response have been proven successful in hospitals in areas of the UK and abroad.

A system called Condition H(elp), which was developed in Pittsburgh and now operates in various hospitals across the USA, allows patients and their families to summon directly the Rapid Response Team (RRT), using a 911 call within the hospital. Two years after the system was launched the Children’s Hospital of Pittsburgh found that it had responded to 42 calls from patients and parents, all arising from communication breakdowns between the patient or parent and the patient’s doctor or nurse. The system had not been abused by patients and had not led to any significant increase in workload, but had consistently led to better patient outcomes, including at one hospital a significant reduction in cardiac arrests and associated deaths, and increased numbers of patient transfers to higher levels of care, such as intensive care. In addition, it had led to wider benefits as the trends in calls were understood and addressed.

In Australia, an escalation process known as ‘Ryan’s Rule’ arose from parents’ concerns being dismissed leading to their son’s death from undiagnosed infection and toxic shock syndrome. Ryan’s Rule allows families to call a dedicated telephone number and ask for a ‘Ryan’s Rule Review’ by a Ryan’s Rule nurse.

In 2009, the Royal Berkshire Hospital pioneered a patient escalation scheme called Call 4 Concern or C4C. The scheme allows patients and their families to call or bleep the hospital’s in-house Critical Care Outreach Team at any time of day if they are concerned about a change in the patient’s condition which they feel their care team is not recognising. The scheme is publicised by posters and leaflets around the hospital and on every bedside locker. Reviews show that over a seven-year period, 534 calls to C4C led to significant interventions in a fifth (114) of cases, including further specialist review and admission to higher levels of care, with additional safety benefits resulting from the other referrals. They also found that 11 calls were made by staff on behalf of a patient’s relative, demonstrating how C4C had become an established service and was accepted by clinical staff. The C4C scheme has subsequently been adopted by various other NHS hospitals.

These successes have led Martha’s family (via a Demos report) to call for NHS England to introduce into more hospitals ‘Martha’s Rule’, a standardised, system-wide, family or staff-activated rapid response team call out, which would empower patients to voice their concerns and encourage clinicians to listen to them more. If properly implemented, it would enable families or carers to call easily for a rapid review or second opinion from an independent ICU or HDU (high dependency unit) doctor within the same hospital in the event of a suspected deterioration or serious concern on the part of a patient on a hospital ward.

Improving patients’ access whilst maintaining doctors’ responsibility

Commenting on the circumstances of Martha’s death, an NHS spokesperson is reported to have reiterated that patients and families can seek a second opinion if they have concerns about their care and that doctors’ professional guidance makes clear that it is essential that any patient’s wishes for a second opinion are respected. However, countless inquiries and reviews have highlighted the NHS’s inability to address the entrenched cultural problems which so often result in preventable harm to patients. Escalation of the patient’s or parents’ concerns is often made impossible in practical terms by hierarchical professional structures, teamwork and communication failures, confirmation bias, and failure to risk assess, review, recognise and then escalate deterioration in the patient’s condition.

We see these problems reflected in fatal and severe injury claims following delayed diagnosis, escalation, senior review and treatment of life-threatening conditions across all specialities, but particularly in time critical treatment of spinal injury/CES, birth injury, meningitis and sepsis.

In too many cases, patients and families’ justifiable concerns, questions or challenges are dismissed by the clinicians who are responsible for their loved ones’ care, leaving them shamed into doubting their own instincts or powerless to prevent an evolving catastrophe. Parents want to put their trust in their medical professionals in extreme and life-threatening situations involving their child but often have an intuitive sense of their child’s deterioration which a doctor with overlapping responsibilities for multiple patients may not readily see. Feeling powerlessness to challenge decisions or delays which result in serious harm or death to a child leaves parents with feelings of guilt and self-blame, often resulting in psychological injury, when the burden of responsibility was not theirs to carry.

The patient’s family can provide vitally important insight to the clinical team about the patient’s medical history, but nothing should take the place of adequate medical examinations, investigations to rule out differential diagnoses, risk assessments and treatment plans, all of which should be kept under review and be flexible enough to change or be escalated in response to changes in the patient’s condition.

Alongside the clinicians’ responsibilities, having a well-publicised, standardised means to call independently for a second opinion would provide parents and partners with a way to raise serious concerns and have them considered, without confrontation, and whilst bypassing many of the hierarchical or cultural barriers to escalation or review. But it is also vitally important that escalation is not perceived primarily as the patient, parent or family’s responsibility and that the duty to review, continually risk assess, escalate and correctly manage the patient’s deteriorating condition remains with the healthcare team. The aim must be to facilitate patients’ families’ access to a second opinion, rather than shift the responsibility for taking action from the doctor to the family or patient. Correct and timely care is the doctor’s responsibility and cannot be left, particularly in times of staffing and workforce shortages, to the patient’s family.

What happens next?

The Parliamentary and Health Service Ombudsman (PHSO) and patient safety charities, such as Healthwatch, have expressed their support for the proposed introduction of Martha’s Rule in hospitals in England. The Secretary of State for Health and Social Care, Steve Barclay, has indicated that the government intends to consider the proposals.

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BENZODIAZEPINES

Is there any possibility that Lincolnshire County Council have similar involvement, since Elizabeth has had frequent rapid tranquilisations and even though she is on a ward it would seem that non-medically trained “professionals” get involved legally when it comes to treatment. We have experienced gaslighting and bullying for being outspoken and then you are portrayed wrongly for being assertive out of valid concerns as someone who is awkward, unsuitable and risk to a vulnerable patient when that parent has turned to leading experts for advice. They try to label/ put blame upon you as a parent as being way harmful or reckless even abusive when my daughter is complaining to me she is being abused under the MH and she is where she is and on a never- ending section achieved through dishonesty thanks to LINCOLNSHIRE COUNTY COUNCIL whose non- trained medical “professionals” even comment on “treatment”.

See below an interesting article and I am pleased to read that this has been looked into but would suggest that EVERY council is investigated in our case LINCOLNSHIRE COUNTY COUNCIL:

“A review of prescriptions given to hundreds of people with drug and alcohol dependencies across England has been triggered after an investigation revealed that a charity breached national guidelines for prescribing diazepam.

The Local Government and Social Care Ombudsman found that Change Grow Live (CGL), on behalf of Cambridgeshire County Council, had been prescribing benzodiazepines to people long-term, against national guidance.

CGL is a national charity that provides drug and alcohol services for 50 other councils.

The NHS recommends that diazepam should not be used for longer than 4 weeks. People should have their prescriptions reviewed regularly, and those reviews should consider the benefits and risks of continuing with the current dose, reducing or stopping it, with a management plan put in place after each review.

Prescriptions Issued Contrary to Agreed Policy

However, in its investigation, the Local Government and Social Care Ombudsman found that CGL had been prescribing benzodiazepines to people long-term, “against national guidance and not in line with its own prescribing policy”. 

During the course of an investigation relating to a client of CGL in Cambridgeshire, the Ombudsman discovered there were others receiving prescriptions for benzodiazepines long-term who were not part of any complaints procedure.

For the latest investigation, a CGL clinician audited the records of nine clients in its Cambridgeshire service who were prescribed long-term benzodiazepines. The audit uncovered that although six of the cases had a clear rationale for their long-term prescription, three cases did not.

The Ombudsman asked CGL to provide an anonymised breakdown of the number of clients on long-term benzodiazepines for each council area where it ran services. This identified that 343 clients were on long-term benzodiazepine prescriptions in the services commissioned by 50 other councils in England. Subsequently, CGL’s medical director commenced a national clinical audit focussing on benzodiazepine prescribing across the organisation.

Patients to Receive Comprehensive Reviews

The ombudsman found CGL was either not reviewing people’s prescriptions regularly enough or not keeping proper records of reviews, and concluded that there was “fault” by CGL which acted for the Council. This had caused “avoidable uncertainty” about the management of clients prescribed long-term benzodiazepines, the report emphasised. 

The ombudsman recommended that CGL and the Council provided a report of the national clinical audit currently being undertaken by CGL. The Council was also required to ensure CGL improved record keeping, updated its policy to include recent guidance from NHS England, and completed yearly audits of Cambridgeshire CGL clients who are on long-term prescriptions of benzodiazepines.

The Council must consider the report and confirm within 3 months the action it has taken or proposes to take, ordered the Ombudsman.

Nigel Ellis, Local Government and Social Care Ombudsman chief executive, said he was “pleased that patients in these vulnerable groups will now have their cases reviewed more regularly and comprehensively”.

Mr Ellis stressed that both CGL and the council had “co-operated fully” with the investigation, and had provided “ready acceptance” of the recommendations.”

Medscape News UK has asked CGL to comment.

Moving to Lincolnshire, hoping to provide a nice home for Elizabeth of her very own in the right environment has been a huge mistake. She was not sectioned previously.

We moved on 15 September 2021 and Elizabeth is still held a prisoner forever on a locked acute ward where rules are strict and rigid and even the prison opposite offer more choice in visiting hours and all the time over many months on end we did not know of Enfield’s involvement in this. I believe the provision of care through LPFT was being funded all the time by Enfield and no wonder why there was no incentive to do anything about the situation other than keep Elizabeth on a never ending section and treat her like a restricted prisoner on DoLs whilst at Ash Villa.

In order to achieve a never-ending section all you need is Trust and Council to work together and be totally dishonest. They do this by abuse of power and process and through the legal system in hearings that go on behind your back at public expense and with threat of huge costs amounting to SLAPPS, using their unregulated legal services department to aid their intentions. They then gang up against you and what chance do you have against a multidisciplinary team backed by a team of dishonest AMHPs who will stop at nothing to present as many untruthful statements as possible. They well and truly have their own agenda.

The council has been dishonest and achieved their ends by a multitude of means playing on of completely flawed capacity assessments not done in line with Masterman- Lister and not fit for purpose. The MCA2005 is used to take control from patients and their families. In most cases this really is in the best interest of the patient but is open to abuse as is everything else. The best interest of the institution are often “factored in” even though that is entirely contradictory to the spirit of the legislation and code of practice. The system is rife with abuse played on by capacity and what they think is best interest. There have been about 5 capacity assessments done and two by the CoP that did not go their way. To achieve their aims doctors raised the drugs around this time to enormous levels:

From 300mg a fortnight to 400mg weekly with 10mg clopixol tablet on top and on top of all this countless rapid tranquilisations occurring every few days which prompted other patients to complain out of concern. Where then was the social services who did nothing?

Capacity is played upon by the team with numerous capacity assessments geared to fail – Shame on you – especially two doctors and 1 SW. Once they have this as ammunition they can make sure that any applications in Elizabeth’s own right will fail on the basis of capacity and what they see as BI. Elizabeth will never be able to challenge – it is designed to shut down any chances of appealing a decision. How corrupt is that! How many more councils and trusts act in this dishonest manner and get away with things?

Elizabeth’s comments “I dont know why this is happening but I reckon it’s social and the services. I do not want the official solicitor to represent me at any time.” Elizabeth had sent this email to me with her views.

Social services then set about destroying the family putting one relative up against the other and cutting others out of everything including Elizabeth herself. It is one thing doing that to me but to my vulnerable daughter it is an absolute disgrace on the part of LINCOLNSHIRE COUNTY COUNCIL AND LINCOLNSHIRE PARTNERSHIP TRUST.

Held like a restricted prisoner for so many months on end whilst at Ash Villa and continuing at various other institutions thereafter, not allowed any leave for months on end, and flanked by staff listening to every word of conversation sometimes only half an hour was given in the grounds outside made me enquire as to whether there was DoLs in place. I always thought it should be the least restrictive care but that is not how Lincolnshire Partnership Trust work.

The care and treatment of my daughter amounted to torture at one particular hospital and this continued at others. Frequent rapid tranquilisations and seclusion with the excuse that this is done to ensure her safety when she is of high risk of mortality and choking. This is not treatment at all when you think about it. It is torture.

There was such frequency in the rapid tranquilisations and seclusion that patients told me they slept with their door open/complained and said they were doing the safeguarding. Patients would approach me in the grounds outside to tell me what was going on and about their concerns that she was being over-drugged. She is a poor/non metaboliser, proven by scientific tests. So the excuse is that it is necessary for seclusion and rapid tranquilisation every few days to ensure safety in line with Trust Policy being adhered to but other patients told me that she was being picked on and the injections were very frequent and for the slightest reason and therefore this “treatment” could even be life-threatening because Elizabeth is a poor/non metaboliser as proven by scientific P450 liver enzyme tests but the CQC’s response is featured in my previous blog and it is quite a threatening letter from someone called David from the Inspection Team.

So you get cut out of everything and excluded, then a string of different doctors are appointed, none of whom have stayed long in their position or offered any leave. These ‘episodes’ were frequent at the time, triggered by fear and the thought of dying in hospital. It is so wicked/cruel and it is no wonder why anyone would have moments of extreme distress as there is no end in sight and all they could do was pin her down and inject her on every occasion. On one occasion Elizabeth was taken to a room to be rapidly injected at Charlesworth Ward, the walls splattered with blood that had not been cleaned off. She described it all to me. This is not treatment at all. Priority on the part of the Council and their Employees was to get rid of the nearest relative and this has been the same case in the previous area and they achieved this simply by ripping you to pieces with their words and criticisms, undermining you in character and person. They will try and say you are of risk to the vulnerable person. They will try and say you act against the best interest of that person and absolutely hate the fact I have this blog which is highlighting the awful treatment my daughter is getting and at least this blog is open and honest and open to criticism from anyone and all the time Elizabeth knew about it and has written on it herself. The words and comments they use amount to defamation of character. When they say a patient has no capacity their capacity assessments have been no fit for purpose and how many more affected. It suits themselves to conclude this but they are protected and seem to be above the law and there is plenty of taxpayer’s money to do what they like with and there is no accountability. That is why my blog is so important in highlighting exactly what is going on under the MH and every blog I write goes to Elizabeth for her approval. I now want a full enquiry into everything as we have not been treated fairly and others can also be affected which is why it is important this is challenged and made public.

Elizabeth had a small room with no wardrobe just a locker. Conditions were described as squalid and she was described as unkempt. She used to spend much of her time in bed in her room missing meal times. I never got to see the room but from the description it sounds almost like a cubicle. She contracted covid twice at Ash Villa. She loves animals and especially birds but was desprived of fresh air and exercise and being able to enjoy the sight of birds in the sky. She was treated very differently to other patients and I was told “she is on “a different kind of section” by a staff member.

Elizabeth was described as “isolating and uncommunicative” “the most complex case ever seen” when in fact she could not in fact stand the noise and kept saying “I am autistic” only to be gaslighted by various staff putting words into her head that she had schizophrenia. She had hurt her back once in a moment of extreme distress rolling on and off the bed. Again the excuse was rapid tranquilisation was necessary for health and safety. The episode, one I saw at home the day before we had to see the crisis team, looked like someone having an epileptic fit and she appeared to be delirious. She was not lashing out at people. All that was needed was just a few adaptions to the annex but nothing has ever been done to help us since we moved and yet they knew. The difference is that staff do not inject people if they are having an epileptic fit. It would be much safer for her to be at home as at least there are carpets.

The episodes were said to be early evening. Elizabeth was abused at a scheme in the former area at night but this was never acknowledged and simply covered up. An ‘episode’ was not lashing out at staff but just contained in one room, rolling about on the floor, screaming and talking in a delirious manner yet is referred to as “challenging behaviour”. In two years not once has Elizabeth ever seen a psychologist. All physical health appointments Enfield were suddenly taking seriously were cancelled as unnecessary by Lincolnshire Partnership Trust.

Castle Ward where Elizabeth is right now is a brand new ward that has ensuite shower rooms and I think because of the better environment Elizabeth has become settled more but what ever possessed the new doctor to raise medication from I think it was 300mg to 500mg a fortnight to the point she can barely walk. I think this is being done once again to tamper with Elizabeth’s capacity and I am very concerned for her life right now.

They want to put her back on a drug she nearly died on ie Clozapine. They want to send her back to London, a place I was glad to move away from. It could be because the Clozapine clinic are not happy with blood tests in which case this is really alarming. I have heard all this information from Elizabeth.

I know they ultimately want to destroy my family completely and put her into care and on DoLs so she can never come home in accordance with her wishes and play on best interests so they get what they want. How vile – I could never work in a profession that is intent on destroying families and that goes about matters in the most underhand dishonest way.

I am her only visitor and I bet they have not even read she is gluten intolerant yet in the evening just a sandwich is given.

Elizabeth said “I am sorry for putting you through all of this“. However it is Lincolnshire Partnership Trust and Lincolnshire County Council with the involvement of Enfield behind everything.

There are many similar cases that come before the Court of Protection who I cannot praise highly enough. Back in 2014 following release from Cambian after 18 months Elizabeth was sent to an awful care home rated good by the CQC. I have got all the CQC inspector’s comments and they are clearly not on your side but that of the institution. One day Elizabeth came home and did not want to return. When I heard why she was unhappy I said “you are not on a CTO – you can come home if you want”. There followed enormous abuse because the care home called Phoenix House Stepping Stones refused to release the treatment and local social services refused to help get it in place leaving me to have to go to Harley Street and for us to appoint Irwin Mitchell in a case called “deprivation of medication – community care”. Suddenly social services in Enfield were taking me to court for DoLs, severance of contact and return of Elizabeth to Phoenix House in Northampton. I had no representation in court myself. I think it is wrong that there is no representation for families in cases where Council’s/ Trusts seek by way of stealth to take control of a vulnerable person’s life when all along they have capacity. Even those who cannot speak have capacity and specialist speech and language experts should be involved in determining the wishes of those people who may want to come home instead of go into a care home.

Our experience of council provisions of care has been so atrocious that I decided to move to provide a nice living accommodation and there is enough room for carers to live in.

MESSAGE TO LINCOLNSHIRE PARTNERSHIP TRUST AND COUNCIL

You have subjected us to months and months of absolute hell. You have been dishonest in doing what you have done and set out to achieve at the expense of the wellbeing of my vulnerable daughter. You have neglected her needs all along and failed to work with the family who would not have stood in the way of visitors for Elizabeth on home premises. You never intended for her to come home because of lack of provision in the community of East Lindsay district. However the environment alone would have been great and this is a caring community. You have achieved your ends by bullying and threatening and tried to destabilise Elizabeth by sending her to so many acute facilities that are completely wrong after so very long with current threats of going back to London cutting us all out like we are nothing and do not exist. You are public organisations that need to be made accountable and should not seek to hide behind confidentiality when Elizabeth asked me to take matters to the High Court meaning her real name would be mentioned.

You know very well Elizabeth has capacity and nothing you have done in terms of this is worth the paper it is written on.

I truly respect the Court of Protection as it is transparent and no way do I want you to hide behind confidentiality and neither does Elizabeth who has requested I take matters to the High Court.

My last words are see you in court and every word I say in an open and transparent manner reflects the hell that other families are going through right now and that is why such a case should be of public interest. I would suggest both Council and Trust think very carefully about allowing Elizabeth to come home in accordance with her wishes.

Lincolnshire Partnership Trust’s website contains an article on the two new wards Ellis and Castle. “Welcome to Ellis and Castle Wards at the Peter Hodgkinson Centre, Lincoln County Hospital.

Just to skim through it states they are acute adult inpatient wards. Ellis is male and Castle female.

“Lincoln welcomes two state-of the art mental health wards who provide crisis support for adults at Peter Hodgkinson Centre” comprising a total of 19 beds with separate ensuite accommodation and access to a courtyard area for peace and quiet. “

The first thing I noticed was how noisy it was on the ward with constant alarms going off yesterday.

I would agree there are lots of light and open spaces.

The dining room was overlooked by staff office and the outside space was nice.

I did not see inside a bedroom and as for inside space to relax – quiet room where I was allowed to visit but even in the quiet room you could hear the commotion of the ward outside.

How we will work with you?

Allocated bedroom, named nurse and consultant.

I did not ask Elizabeth who the named nurse was but the consultant is a doctor called Dr Khochar. I will correct the spelling later if I have spelt his name wrong. There also seems to be another doctor in the background, namely Dr Toby Greenall from Ash Villa. I dont know what his involvement is as Elizabeth is no longer at Ash Villa, a hospital that requires complete and extensive refurbishment to give every single bedroom an en-suite and outside there is a tennis court that could be converted into a swimming pool which could be good for the patients and much more could be done with the grounds and facility to bring it up to standards.

So far the doctors under Lincolnshire Partnership Trust have been:

1. Dr Ismail Charlesworth Ward who wrongly tried to indicate Elizabeth needed some sort of nursing care which is nonsense.

2. Dr Shahpasandy – who refused his own research into the Limbic System. Under his reign Elizabeth was treated like a restricted prisonegs

3. Dr Ismail again

4. Dr Kumar drugs raised from 400mg fortnightly of Clopixol depot to 400mg weekly plus a tablet of 10mg of God knows what

5. Dr Islam

6. Dr Suleyman who did a flawed capacity assessment for court

7. Dr T Greenhall who is the only Dr to give any leave but then took away this leave after hearing Elizabeth had one of the frequent ‘episodes’ at home he had witnessed at Ash Villa triggered by having to visit crisis team next day, when all that was needed was a few adaptions for the little bungalow we provided. I wonder what his involvement is now apart from trying to push Clozapine without having read what happened when Elizabeth was put on this at the shocking Royal Bethlem (Bedlam) NPU Beckenham?

8. Dr Memon of Cygnet who I happened to like as he is a Neuropsychiatrist and was interested in Elizabeth’s physical health and called an ambulance after witnesses an ‘episode’.

9. Dr Mohammed of Ward 12

10. Dr Khochar of Castle Ward who is also trying to prescribe Clozapine according to Elizabeth. I have not met him yet so it is too early to comment. However Elizabeth was upset that he was trying to push clozapine as she can remember how ill she was on this chemical. It did not work anyway.

A total of 10 doctors

Hospitals under LPFT alone:

1. Charlesworth Ward PHU Lincoln County Hospital (dormitory accommodation)

2.Ash Villa Sleaford

3. Cygnet Appletree

4. Ward 12

5. Castle Ward Lincoln County Hospital

MY FIRST VISIT TO CASTLE WARD

I was in the area so my visit was unplanned. I had asked to briefly see the Carer’s Champion but was told she was in a meeting. I was then told visiting hours were between 6 – 8 pm. I asked if they could possibly accommodate me a bit earlier as I lived a fair distance away and I do not particularly like driving in the pitch dark but I was told firmly that those were set visiting hours and there would be no flexibility whatsoever. When I commented about visiting on lots of other wards was normally after 2 pm that this was not the case on Castle Ward except at weekends. The receptionist was suddenly joined by a male colleague from the crisis team who just stood there listening. It was as though they were expecting trouble from me as I had dared to criticise their rigid visiting hours. I was not demanding I saw Elizabeth there and then but found it a bit intimidating to suddenly have a witness appear from nowhere. I then said I wanted to go to the Trust office which address I was given but when I looked up how far it was, I could not be bothered as I had already walked a fair distance from where I parked. Instead I had to kill time as I had 6 hours wait to see Elizabeth so I went for a walk and looked around Wickes, then spent the rest of my time in the cafe inside hospital main entrance and then sat in the chapel where it is truly peaceful. Whilst there, I wrote a prayer and put it on their “tree” and spoke to someone inside to tell them how we had been treated and that I was at the chapel a year ago in the same position as now. I had asked if they visited patients on the mental health wards. I do not think Elizabeth’s religious needs are being met on Castle Ward. If she does not have any leave and cannot visit the chapel then this is very wrong.

I then made my way to the ward. I had earlier on dropped in a few things for Elizabeth who has said she is starving hungry in the evenings when they get just a sandwich. She has proved though she is capable of ordering on line and though they say she has no capacity this rubbishes their claims completely.

I was allowed right on to the ward and shown to the quiet room and Elizabeth was smiling and happy. The food I bought her earlier was healthy. I understand rules are rigid on this ward in that patients can only order a takeaway once a week at the weekend.

I then helped Elizabeth sort out the missing shopping orders through Deliveroo who to be fair promptly refunded her.

Elizabeth told me she could barely walk and needed help to walk and that her medication had been raised enormously and she felt her struggles to walk were associated. I thought not again! – don’t these doctors read the files properly and especially the Discharge Note pointing to only physical health as well as the scientific P450 liver enzyme results of “non metaboliser“. Elizabeth was not sure as to what level the Clopizol had been raised but said she was certainly suffering as a result. I accompanied Elizabeth to the nurses station in the centre of the dining room. Elizabeth asked the quantity of drugs prescribed and found out the depot had been raised to 500mg fortnightly. She also said that being administered these drugs was very painful. I complained about this raised level of drugs stating back in Enfield she was being taken off the drugs by 50mg every six weeks due to her discharge note stating only physical conditions ie “abnormal findings on scan pointing to cns”. She was due a reduction down to 250mg when we moved to Lincolnshire. One of the male nurses was taking it seriously that Elizabeth complained of pain to joints and not being able to walk because of the raised injection. There have been no incidents for weeks on end so why raise it! Before we came to Lincolnshire Elizabeth was not even sectioned but Lincolnshire Partnership Trust seized the opportunity to hold her prisoner on various acute wards with the intention of institutionalising her into care for the rest of her life, all paid for by Enfield, our former area (still involved administratively). Probably that means they are still paying. They have gone about things in the most disturbing and dishonest manner which I intend to expose as this applies to other areas too and is of public interest.

So what has been achieved by such lengthy two year imprisonment – the answer is absolutely nothing. Not once has Elizabeth seen a psychologist. How many times do I have to tell LPFT there are underlying physical health concerns and that I have had extensive tests done privately into Endocrinology on the advice of Dr Moncrieff and then there are the scientific tests done on metabolising and further genetic tests done that have prompted me to contact Professor Hanns Lochmuller and other leading professors. LPFT are negligent in ignoring underlying physical health and also on a legal basis in terms of their conduct.

So what has upset me about Castle Ward? ……

The visiting hours so rigid and un-flexible to carers like myself who live a fair distance away. Lincoln prison opposite give more consideration to visitors. (having said all this it is every bit possible that other carers and patients are treated better than us and there is flexibility towards them). I got this impression from talking to patients outside the unit.

Parking is all for staff with permits and no thought for carers whatsoever. It costs c£6 a day to park at Lincolnshire County Hospital. I could not see any disabled parking bays for any disabled carers. It is not like visiting someone in the general hospital as people under MH can be stuck there for months and months or years on end so no thought to carers of people stuck on never ending “sentences” under LPFT

There does not seem to be any leave arranged yet but I have not properly checked. Elizabeth had a CPA where 9 people attended and no advocate was present. I do not know if Voiceability were even aware of this but I will contact them. I was not invited myself yet am the only visitor for my daughter even though I have been ousted as her nearest relative in the most disturbing manner.

Elizabeth was told by RC Dr Khochar that “you are on an on-going section”. The only way you will get off is if you call for a tribunal. Several times now Elizabeth has tried to appoint solicitors for this purpose and they have not got back to her. Other patients on Ash Villa tried to help her but what about the advocates? An advocate has no power at a tribunal but surely the advocates should be helping towards getting a tribunal with solicitors in hand especially in the current disturbing circumstances which I cannot go into. There has not been a solicitor appointed for some time as there has been several changes in ward and since my displacement no-one appears to be helping. However it does make me wonder – clearly they have done what they did to make sure Elizabeth cannot make any applications in her own right. It will be interesting to see what happens as if Elizabeth did request a Tribunal only to have her application quashed on the grounds of best interest and best interest for whom exactly??? To me it is best interest of the institution! I wonder also if this is being paid for still by Enfield another area where we were bullied and Elizabeth was abused.

I think the whole process has been unlawful. There has been extreme dishonesty between Lincolnshire Partnership Trust and Lincolnshire County Council in terms of abuse of power and process. This has led to two years of ongoing imprisonment with decline to Elizabeth’s physical health and no end in sight when Elizabeth was not even on a section prior to moving and living peacefully in the community and compliant. Elizabeth has said her physical health has suffered irreparable damage. Whilst a nurse yesterday took seriously Elizabeth’s concerns and examined her in the treatment room with me present, he has promised to relay this to Dr Khochar and team. If nothing is done about reducing the drug to former levels it is affecting her ability to walk and causing sensitivity to her hands this needs to go to the CQC who rate them good.

When someone has an endocrine dysfunction this is physical and NOT MENTAL HEALTH and should not be ignored. Referrals to specialists need to be made. A medically untrained social worker described Elizabeth’s ‘symptoms’ as those observed in patients with hypothyroidism “bouts of emotional dysregulation – aggression towards others” “dissociation and disinhibition – struggles to manage her thoughts, feelings and behaviour.” He is not even qualified to adduce evidence of a clinical nature but all of these symptoms are associated with dysfunctional endocrine functions – defective thyroid function. Rapid tranquilisation and seclusion are not recognised treatment for hypo or hyperthyroidism. However in a slightly better environment of a new ward Elizabeth is more settled and there has been no incidents that would warrant a massive increase in medication.

ALL PSYCHIATRIC PATIENTS SHOULD HAVE REGULAR ENDOCRINE FUNCTION TESTS AND NEUROLOGICAL SCANS FOR DYSFUNCTIONS IN THE AMYGDALA HIPPOCAMPUS AND PRE-FRONTAL CORTEX. IT IS BLINDINGLY OBVIOUS (except to many psychiatrists) PRECAUTION THAT PATHOLOCAL DISORDERS SHOULD BE SCREENED FOR.

I am going to write to Dr Khochar asking for Endocrine tests to check on Elizabeth’s existing conditions and if he refuses I think he should put his decision in writing to me with a full explanation of why the endocrine tests and brain scans are not required. All parents and carers should consider this.

A leading expert has written about research on inflammation of the brain and how it affects medication efficacy. Apparently there were 20 cases where patients were prescribed clozapine and had concomitant inflammatory disorders including those caused by pathogen infections and autoimmune conditions. The inflammation increased the serum dose ratio and in 11 of the cases it was recommended to halve the dose in 5 others to reduce it by a third. Serum concentration is the major issue with this drug rather than dose and a high serum concentration can occur with a moderate dose. It is this ratio that creates the problems with ADR’s and metabolism failure due to cytochrome P450 down regulation.

The maximum dose in all cases had been 350mg and nowhere near maximum but still the serum dose ratio was adaversely affeced by the inflammatory disorder the patient had.

Any patient presenting with inflammatory conditions need close monitoring to avoid ADR’s and dose modification is almost certainly necessary. It should be noted that inflammatory conditions are commonly seen in patients with endocrine disorders like Elizabeth.

Elizabeth has twice had covid at Ash Villa

“Covid-19 can cross the blood brain barrier and has caused manifestations of psychiatric disorders in some patients.  It is a clear and up to date example of a physiological cause of mental illness.  Psych drugs and ECT can facilitate pathogens entering brain tissue.  The powers that be deny this in the face of mountains of evidence.”

Medical science is in the hands of powerful lobby groups and pays only lip service to research ethics.  If doctors looked for lesions, infections, inflammatory causes of poor neurotransmitter effectiveness and metabolism problems our psychiatric hospitals would be virtually empty.  They don’t of course.  They prefer the cosy myth of psychosis being a lifelong chronic condition and by doing that create a self fulfilling prophecy.

There is no decisive evidence supporting a gene theory of schizophrenia in spite of decades of biopsychs looking for one.  Over the same period it has been decisively proven that gene markers  for cytochromes have enormous influence on the efficacy of drugs.  We were right all along on this but the biopsychs still maintain that they are right on every aspect.

The knowledge of physiological causes of disturbed mental states is older than psychiatry itself.  The biopsychs (friends of the drug companies) have fought long and hard to maintain the mythology of genetic causeds of schizophrenia et al and never come top to the level of evidence needed.

Bob Johnson and Antony Forde who are both expert in determining interview responses vis-a-vis capacity  say that Elizabeth’s responses indicate not only capacity but clear insight.  This also brings the diagnosis into sharp focus.  Indeed it contradicts many of the diagnostic signs in schizophrenia.

Currently working on neurodegenerative disorders and research into potential treatments (prognosis currently very poor).  The psychiatrists  (apart from the enlightened ones) absolutely ignore brain lesions, BBB transmitted infections and drug related protein damage in the brain.  Most of them know nothing about the glympathic  system and how important it is in clearing the brain of protein detritus.  We know that neuroleptic medications can transport neurotoxins across the BBB.  Noone takes any notice of that either on the wards.  They are totally in the grip of Big Pharma and the Royal Colleges who take their coin.

Whilst idiotic diagnostic criteria still form the basis of the decision on capacity (also in contravention of the purpose of the legislation) short-sighted medical professionals will continue with their preposterous conclusions.  There is no such thing as schizophrenia or personality disorder.  Patients present with disordered behaviour for a huge number of reasons and the majority have physiological causes.  It has been discussed in great detail the effect of inflammation on neuroreceptors and neurotransmitter pathways.  The headshrinkers on the wards completely ignore this gigantic blue whale in the bathtub.

“The MCA2005 is used to take control from patients and their families.  In most cases this really is in the best interest of the patient but is open to abuse as is everything else.  The best interest of the institution are often ‘factored in’ even though that is entirely contradictory to the spirit of the legislation and code of practice. The MCA2005 is used to take control from patients and their families.  In most cases this really is in the best interest of the patient but is open to abuse as is everything else.  The best interest of the institution are often ‘factored in’ even though that is entirely contradictory to the spirit of the legislation and code of practice.”

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

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

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

ENCEPHALITIS

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

What is the life expectancy with encephalitis?

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

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

How many people have died from encephalitis?

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

What happens if encephalitis goes untreated?

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

Can encephalitis go undiagnosed?

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

How does encephalitis affect behavior?

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

Can encephalitis lead to dementia?

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

Does encephalitis cause altered mental status?

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

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

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

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

HUNTINGDON’S DISEASE:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The response below from Maria Caulfield was as a result of a letter from Victoria Atkins MP on my behalf.

“Thank you for taking time to contact me about the treatment of people with severe mental health problems.

Please see enclosed correspondence which I have received from Maria Caulfield MP Parliamentary Under-Secretary for Mental Health and Women’s Health Strategy, in response to enquiries which I have made on your behalf.

I hope you find the response from the Minister helpful.

Yours sincerely

Victoria Atkins MP

Member of Parliament for Louth and Horncastle

First of all re the above letter I would highlight “the treatment of people with severe mental health problems?”. Totally wrong interpretation as I am talking about those stuck under acute/PICUS that have physical health conditions like Elizabeth who are in need of proper assessments especially since care and treatment for MH disorder does not work. Physical health can affect someone’s mental health and I am going to have to go back to Victoria Atkins as the response to me from her department as well as that from Maria Caulfield is totally wrong and totally unhelpful.

I was talking about proper assessments when nothing else has worked and especially when you have proven as a parent there are underlying physical health concerns and have evidence of such.

I am going to write back as many times until I get the right answer addressed.

LETTER FROM MARIA CAULFIELD MP DATED 02.08.2023

“Dear Victoria

Thank you for your correspondence of 18 April on behalf of your constituent Ms Susan Bevis about the treatment of people with severe mental health problems. Please accept my sincere apologies for the delay in writing.

I was very sorry to read of Ms Bevis’ daughter’s mental health problems and the experience she describes. I can appreciate that this situation has caused a great deal of frustration and distress.

I hope you will understand tht the department cannot comment or intervene in individual cases.

As the Parliamentary and Health Services Ombudsman is currently investigating this case, Ms Bevis will have to wait on its decision. If Ms Bevis has any further questions, she may through its website at http://www.ombudsman.org.uk or by email at phso.enquiries@ombudsman.org.uk.

I am sorry I cannot be more directly helpful

Yours sincerely

MARIA CAULFIELD MP

Once again I would point out that the words “severe mental health problems” are completely wrong and nothing to do with my complaint. Again in the second paragraph it is mentioned about my daughter’s severe mental health problems and that is not what my complaint is about at all.

My complaint was about the total neglect of my daughter’s underlying physical health. That is where the frustration and total distress lies.

The Discharge Note said “abnormal findings on scan pointing to CNS”. So what is that then? Central nervous system conditions could be MS or Parkinsons or early onset dementia. When you have extensive private tests done to prove there is an endocrine dysfunction for a start this has nothing whatsoever to do with severe MH problems.

It is no wonder Elizabeth says she is not a person. Like an object she has been sent all over the country for the same “treatment” of rapid tranquilisation and seclusion which I can only describe as torture. Her arm was full of bruises when I visited her on Ward 12 where blood samples have been obtained and I suppose each hospital has to do their own tests and what about more extensive tests in connection with the private assessments I have had done which may involve MRI or ultrasound or referral to specialists????

When nothing has worked so far this is when extensive physical health checks should be done by specialists and not under psychiatric/mental health care.

I have already proven that under Lincolnshire Partnership Trust the treatment of MH patients and their families is woefully inadequate. When I requested an MRI scan I was told it was not necessary as the one in 2015 was “normal”. 2015 was a long time ago now. We are now in 2023 and even I as a mother know this is wrong and neglectful. When I mentioned the endocrine tests recommended by Dr Moncrieff that was ignored and so was all the appointments in London the GP said I should take her to.

Here are the doctors from Ash Villa:

Dr H Shahpasandy (refused his own research into the Limbic system that proved one of his patients did not have schizophrenia but inflammation of the brain). When I asked for this research to be carried out for Elizabeth this was ignored. Patient recovered when taken off the clopixol depot. Considering the discharge note from Enfield that pointed to only physical health concerns this is surely wrong. All appointments for physical health in London cancelled as I was refused the opportunity to take Elizabeth despite the fact the GP surgery said I should go back to London because of long waiting lists.

Dr Ismail – RC of Charlesworth Ward. Appointed again when Dr Shahpasandy left and did nothing both times. Comments in certain file notes were totally inaccurate when it came to my ability to care for my daughter and look after her dietary needs. There was safeguarding instigated under this ward against me and again under Ash Villa whilst desperate attempts were made to take away the Power of Attorney by stating we were abusive. It did not work out but this put us under tremendous pressure at the time.

Dr Kumar – RC only for a short while. Never got to meet him but during this time medication (drugs) were raised from fortnightly to weekly at enormous quantities. Failure to take into account the P450 liver enzyme tests that stated “poor/non metaboliser”. Failure to take into account Endocrine tests that showed dysfunction or to refer to an Endocrinologist. Failure re MRI scan as previous doctors failed.

Dr Islam – I think I met him on one occasion but nothing achieved and he was only there a very short period of time.

Dr Suleyman carried out flawed capacity assessment not in line with Master-man Lister.

In desperation various other nursing staff tried to carry out capacity assessments too to decide on what THEY thought was “best interest” and the main thing at the time was getting rid of the nearest relative which happened to be me at the time. I had not even challenged them but in 23 months – no sign of improvement whatsover.

Dr T Greenall

Unlike any of the others he did give some leave which was going very well considering the torture my daughter endured under this “hospital”. Leave commenced slowly and gradually and progressed to home but they sent the carer’s champion and an OT to visit home. The awful thing was we had to meet up with the crisis team and Elizabeth absolutely hated this because of bad memories. Home is a very large house in extensive grounds overlooking beach and sea. We tried to provide the right environment and knew what worked because of the way Elizabeth came home from Australia even wanting a job. This was because the right care was given ie psychotherapy. It was not necessary to forcibly inject Elizabeth as the professionals from Working to Recovery had the right approach unlike the NHS.

Elizabeth loves animals and birds and we are surrounded by nature reserves in my area, sea and beach. Nothing prepared us for the horrors we were about to face thanks to Lincolnshire Partnership Trust and Council. Under two areas we have encountered bullying and neglect which was our reason for wanting to move anyway hoping for better in a new area however I was sadly very much mistaken. This shows wherever in this country under MH care similar treatment is what you are likely to find. One of the things that was so bad was that Ash Villa were aware of several moments of ‘inconsolable distress’ and failed to provide anything that could prevent any injury. It says in the files she sustained back injury when rolling on and off the bed which is why home is a much safer environment. What we saw was horrific. This had been seen many times by Ash Villa staff but there was no warning as to what to expect in the ward Elizabeth would be in a delirious state as though she was suffering from Akathisia. She would be suffering tremors and shaking. She would be talking in an incomprehensible, delirious manner, rolling on and off the bed and slapping herself/screaming as though suffering from a terrible nightmare. This episode we witnessed went on for at least an hour at home. Since then we have asked for a strong bed as the bed was broken and some padding to the wall as at one point she knocked her head on the wall. This episode has not put me off having Elizabeth home and I think home is much safer. Just imagine an episode like this on a ward where the floor is hard. This would always result in rapid tranquilisation on most occasions and for someone who is a poor/non metaboliser this could be life-threatening. After that all home leave cancelled and back to square 1 again and still absolutely nothing is working because the treatment is wrong and I have proven the diagnosis to be wrong too.

Dr Memon – Cygnet Appletree

I have to say I think Dr Memon is about the best doctor of all as he was not dismissive towards Elizabeth’s physical health whereas all the others refused the scan which I see as negligent. I had the scan done privately. It could not have been at all pleasant for Elizabeth to undergo a scan in a closed scanner because she is claustrophobic but that was all I could get for a brain scan. Dr Memon also called for an ambulance after witnessing an episode.

Unfortunately, according to Elizabeth there were not extensive tests done in A&E. Elizabeth was just brought back to Cygnet who applied rapid tranquilisation frequently – so this was nursing staff administering prn constantly and this was outlined as criticism in the CQC report previously. Imagine being forcibly injected every few days. Same treatment at Ash Villa which prompted several other patients to report to me stating they slept with their door open at night and were doing the safeguarding thmselves. I think some of them raised safeguarding concerns. Whilst at Cygnet we were both keeping a record of how many days Elizabeth went without incident and we got to 4 days then had to start all over again as according to Elizabeth she had been promised she could come home if she went 7 days without incident. She managed to do this before her transfer and then her sudden move to Ward 12 Boston took place.

At Cygnet Elizabeth started smoking, had frequent rapid tranquilisation/very intrusive 15 minute watch/phone initially taken away because of Elizabeth calling police/loss of brand new shoes.

Dr Mohammed – Ward 12 Boston

Elizabeth placed on a dormitory ward. A mixed ward. Totally unsuitable as she tried to gouge her eyes out in distress whilst on Charlesworth Ward. Following another ‘episode’ which must have been distressing for other patients in the dormitory to watch, Ash Villa staff were contacted according to Elizabeth someone called Olive and several others came to inject her.

I asked Ward 12 to let me have the check list of possessions from Cygnet to Ward 12 as I know the brand new shoes are missing and so many things have gone missing so when this happens I believe the items should be replaced. Then I find out that several of her possessions were left behind on Ward 12 including a bank card. It has been a nightmare having to constantly chase up about this.

Castle Ward Lincoln – transferred Wednesday 9 August 2023

No-one has contacted me yet from Castle Ward. I do not know who the doctor is. The only reason I know she is there is because Elizabeth contacted me “Hi Mum I am just getting ready to move to Castle Ward. On Tuesday 8 August Elizabeth wrote “Hello I’m being treated as a prisoner I believe”. I then received a call from the carers champion of Ward 12 to inform me but I already knew. Then Elizabeth informed me she had left her bank card behind on Ward 12. I then had to ring Ward 12 and it was not only this that had been left behind but other possessions.

Response from Maria Caulfield:

In all this time and many years prior to moving Elizabeth has been on treatment that is totally wrong and the only care that has worked has been what I provided myself through Working to Recovery.

This shows how MH hospitals are failing to address underlying physical health probelsms that can manifest in symptoms thought to be schizophrenia or Bipolar when all along no proper assessments are done on physical health to rule out such possibility when nothing else has worked. Instead the vulnerable person is subject to torture and abuse by frequent seclusion and rapid tranquilisation which can be life-threatening. Elizabeth did not have any such episodes before we moved to Lincolnshire.

The question I want to ask Maria Caulfield is “WHY HAS NO PSYCHOLOGIST BEEN ALLOCATED TO ELIZABETH in practically 2 years? Why was she refused vital physical health checks with specialists – already arranged by former area? Why aren’t proper assessments done into underlying physical health conditions which need referrals to specialists. I have proven genetic dysfunction. The tests are well and truly behind the US for genetic metabolising disorder but now there is a specialist clinic in Wales called SWAN but one I have been recommended is Cleveland Clinic OHio. Why are we so behind the US in carrying out proper assessments on physical health.

My daughter’s conditions are PHYSICAL not mental but now she is traumatised thanks to LINCOLNSHIRE PARTNERSHIP TRUST and their inadequate MH care provision. This is a nationwide issue where none of the trusts carry out proper assessments to ascertain underlying physical health causes which could be anything from Limbic System/genetic metabolising dysfunction/endocrine dysfunction. The referrals should be made to an immunologist/endocrinologist/geneticist/neurologist not just by mere observation of symptoms when treatment fails to work.

I was also not happy to hear that Cygnet do not pass on all the records. Why not? especially when the NHS is paying.

Right now it is distressing as none of us can get through on the phone and I have asked several times for the phone to be given back to Elizabeth. I have also asked several times as to whether the bank card and other possessions left behind on Ward 12 have been received by Castle Ward. It is exhausting to have to keep chasing them for response.