From: susan bevis
Sent: 29 February 2024 12:38
To: CARECONCERNS (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) <lpft.careconcerns@nhs.net>
Cc: NEUROLOGYSECRETARIESLINCOLN (UNITED LINCOLNSHIRE HOSPITALS NHS TRUST) <ulh.tr-neurologysecs.lincoln@nhs.net>; Christopher Reid <Chris.Reid@parliament.uk>; Enquiries <Enquiries@cqc.org.uk>; CONNERY, Sarah (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) <sarah.connery@nhs.net>

Subject: Re: EB – Update

I wish to address the serious threats made verbally by Dr WK.

“I am banning you indefinitely for inciting your daughter to attack members of staff on Xmas Day“.   I want an apology for that for a start.

You have no right to take away the phone we as a family pay a contract.  The matter of human rights will be address before the High Court.  You are in breach of Art 8, 5, 3, Equality Act and the Code of Conduct for the MHA / MCA.   Staff are acting ultra vires and you are treating my daughter like a restricted prisoner under the MHA 1983.  What you are doing is entirely unlawful.

The restrictions you claim to have ended are very much continuing.  You have no right to treat my daughter the way you are doing in the most degrading manner against all codes of conduct and the files will be requested by the court including all the notes being written behind my back by healthcare assistants who have been instructed to.

You are not using proper diagnostic scale PANSS and there is no proper scanner only a 1.5 Tesla and I am going to all the newspapers and TV stations to advise as this has cost someone their life before more lives are lost and Elizabeth will need to go to Sheffield to be re-tested under ultrasound for the cancer scare she had at Ash Villa since a Tesla 1.5 will not detect everything.

You had no right to ban the visits and now I want those comments made by Dr K and threats said to me verbally addressed and an apology.  I will continue to issue invoices because you are depriving my daughter of her phone so that she cannot play her music and readily have contact therefore LPFT are guilty of discrimination.   I will need all your reports Into your investigation of the alleged incident where Police were called on Xmas Day and to know that staff themselves who reported “concerns” have completed a Section 9 statement as we did.   I have contacted the NMC who are taking my complaint very seriously as nursing staff are in breach of their own code of conduct but acting on instructions from a combination of Management, Clinical Lead and of course the person with ultimate control Responsible Clinician Dr Waqqas Khokhar who is acting ultra vires.  Please do not assume Fridays as I am unable to visit on set days of the week.

You are acting totally unlawfully.

Yours faithfully

Susan A Bevis

Mother POA and Litigation Friend.   

---

From: CARECONCERNS (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) <lpft.careconcerns@nhs.net>
Sent: 29 February 2024 12:17
To: susanb
Subject: LB – Update

Dear Mrs Bevis,

We would like to communicate the following –

1. Ward round for E is at 12pm tomorrow, 1^st March 2024. The clinical staff involved in E’s care would like for you to attend, specifically to discuss the filming of E’s episodes of distress to allow for further investigation of this with ULHT staff.
2. To address your recent concerns around E’s access to her mobile phone, E’s phone access was limited for a fixed period of time as part of a comprehensive care plan that considered E’s human rights. This was to ensure the response to her phone use did not adversely impact her engagement with, or the efficacy of, her treatment plan. This was ceased on Monday 5^th February 2024 following a review of all of the relevant factors. To clarify this further, E’s phone is kept securely by ward staff, but E is able to request to use her phone at any time. In addition, ward staff regularly encourage E to use her phone to maintain contact with family.
3. Please be advised following your recent visit to Castle Ward that supervised visits to Castle Ward will be facilitated once a week, for one hour at a time. To request a time slot for visitation, please email the care concerns inbox. The inbox will confirm the date and time for the following week’s visit each Friday. All visits must be pre-arranged.

Kind regards,

The Mental Health Act Team.

Damning reports on patient care attached.  One states that “patient neglect is a breach of the most fundamental medical ethics of all ‘first do no harm’.

LPFT have denied Elizabeth the medical ethic of autonomy and benificence by not getting her fully examined and monitored.

Their obsession with what she might be telling me at the expense of her care is a gross breach of the most fundamental of all the Principalist ethics of Beauchamp & Childress.

Here are examples of abuse from both Enfield and Lincolnshire:

My daughter was abused in the former area under both hospitals and supported living which is why I moved as I wanted her to be in the right environment like I provided briefly under and to give her a fresh start in what I thought was the right environment. I had challenged care in the community in a supported living scheme where things went wrong. There was no honesty and no rectification of anything in the circumstances. Everything stemmed from there onwards. Elizabeth had been subject to institutional care on and off where not once when things went wrong did anyone raise their hands.

The Discharge Note stated “Abnormal Findings on Scan pointing to CNS twice. I have not been unable to get an explanation?

Upon moving we have been subject to extreme bullying because I have continually asked what the scans meant done by former area. When I discovered Dr Shahpasandy of Ash Villa did some fantastic research on the Limbic System I asked if Elizabeth could be included. I was then faced with no end of excuses. It was as though none of these doctors (Psychiatrists) wanted her to have the research that discovered that a former patient did not in fact have schizophrenia but inflammation of the brain and needed a different form of treatment and as a result of that became better. That is all I have ever wanted for my daughter to be properly pathologically tests since according to past file copies, it clearly says “Anterior Region Medial Temporal Compromise and so I checked what this meant and I was told “well done” by Headways that MH professionals training did not go nearly far enough to be able to conclude on neurological conditions, she was a former MH nurse. This puts into question the training for a start and that why isn’t training under MH more comprehensive and that it should in fact go much further in order that patients are not dismissed for underlying physical health conditions that may need a different kind of medical treatment.

Because I have dared to question I have been subject to bullying – extreme bullying. I was told “I am displacing you as NR” I thought not again as I have had a lifetime of this kind of treatment. It would appear all you have to do is to challenge in order to be the subject of bullying and various people including carers and former patients have tried to advise me that I should go along with everything but how can I when people are dying from being misdiagnosed and not having the right kind of treatment because the NHS is failing to look properly into neurological and underlying physical health conditions which could be autoimmune, could be endocrine dysfunction, thyroid, infection. It is very wrong to give someone a label for life and not be open to consider that there may be underlying physical health factors that need proper investigation.

Just now I have been on the phone to Ron Coleman. Both he and Karen Taylor through “Working-to-recovery provided wonderful care at their home on the Isle of Lewis. This care took my daughter to Spain and all over France and then to Australia, the account of this is on the Rightful Lives Website. She was in a terrible state before going away but came home unrecognisable. I will be forever grateful to Working-to-Recovery and thanked Ron Coleman for his wonderful care today and how the entire family took my daughter to the most wonderful locations and tried to work properly with her for the first time ever UNLIKE THE NHS. Unfortunately the NHS is rife with bullying and what I am finding right now is that staff are acting ultra vires. When my daughter returned home from Australia she wanted a job, she was totally unrecognisable as she had psychotherapy but because my shocking area of Enfield provided nothing she went downhill again. How I wish she had stayed forever in Australia. If I never saw my daughter again I would be happy in the knowledge she was in the right company and environment.

Via the NHS I have been described as someone who is controlling, abusive, aggressive – a vile person. I am not going to defend myself. I will leave it to my readers to decide.

Via the NHS upon moving I have been subject to severe bullying as follows:

First of all they declined to get the treatment up and running which was the clopixol depot leading to her going downhill – even I as just a mother knows that you cannot just stop these powerful drugs in one go.

Secondly they wanted the POA so they tried to make me look abusive – psychological abuse was mentioned. The Public Guardian Office had to investigate and found in my favour.

Thirdly they wanted the role of NR to be given to the social services, a conflict of interest. There followed months and months of litigation where I desperately tried to defend myself but there was no hope under this court because judges do not have the remit to challenge whether someone is really suitable or not. I was threatened constantly with costs as a result. That is known as SLAPPS.

“Suitability” should surely be a parent and carer who visits regularly and who cares. I have no say in anything in terms of treatment as this comes under doctors however I have gone by past file records. I have reports from other doctors who thoroughly dispute the diagnosis and I have noticed how Elizabeth has not been listened to so have done what any parent would do and stick up for her – defend her which has not made me popular. However no-one can dispute the fact that I have tried to help giving everything I have got to my disabled daughter and not expecting anything in return apart from the continuation of the former area’s medication whether I agreed with it or not. It is not that I am saying no-one else cares in the family but I happen to live the closest plus visit weekly. Anyway, the County Court Displaced me and all I will say is noone has effectively acted as NR and social services in any case are “a conflict of interest” and have done nothing to safeguard my daughter during the time at Ash Villa.

Anyway because I dared to challenge I was treated in the same way as present previously at Ash Villa:

phone restricted and visiting 2-1. No leave for months and months on end. Several flawed capacity assessments done not taking into account Principle 4, accident leading to possible injury and the start of the “epileptic fits” which noone knows really what is the cause. Today I have been asked whether Elizabeth agrees to be filmed during an episode. She disagreed. So what now? I personally think she needs to be assessed properly in Sheffield as an inpatient on a neurological ward and where they have the correct scanner ie a Tesla 3.

I am making everyone aware that there is a need for a Tesla 3 scanner at Lincs because a 1.5 does not pick everything up and has been known to miss tumours. All I want is an explanation of what is show on the MRI scans in certain images.

The treatment has been awful for my daughter. She is already held a prisoner but imagine how this would feel when denied basic human rights and proper pathological tests.

She has been treated in a degrading manner for far too long with phone taken away, visits restricted and medical pathological tests flatly refused.

I will add to this blog later to describe what treatment is given to patients under LPFT

https://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-13-156/figures/1

BMC HEALTH SERVICES RESEARCH

Reader and Gillespie BMC Health Services Research 2013, 13:156

R E S EAR CH A R TIC L E

Patient neglect in healthcare institutions: a systematic review and conceptual model

Tom W Reader* and Alex Gillespie
Abstract Background: Patient neglect is an issue of increasing public concern in Europe and North America, yet remains poorly understood. This is the first systematic review on the nature, frequency and causes of patient neglect as distinct from patient safety topics such as medical error.
Method: The Pubmed, Science Direct, and Medline databases were searched in order to identify research studies investigating patient neglect. Ten articles and four government reports met the inclusion criteria of reporting primary data on the occurrence or causes of patient neglect. Qualitative and quantitative data extraction investigated:

(1) the definition of patient neglect,

(2) the forms of behaviour associated with neglect,

(3) the reported frequency of neglect, and

(4) the causes of neglect.
Results: Patient neglect is found to have two aspects. First, procedure neglect, which refers to failures of healthcare staff to achieve objective standards of care. Second, caring neglect, which refers to behaviours that lead patients and observers to believe that staff have uncaring attitudes. The perceived frequency of neglectful behaviour varies by observer. Patients and their family members are more likely to report neglect than healthcare staff, and nurses are more likely to report on the neglectful behaviours of other nurses than on their own behaviour. The causes of patient neglect frequently relate to organisational factors (e.g. high workloads that constrain the behaviours of healthcare staff, burnout), and the relationship between carers and patients.
Conclusion: A social psychology-based conceptual model is developed to explain the occurrence and nature of patient neglect. This model will facilitate investigations of

i) differences between patients and healthcare staff in how they perceive neglect,

ii) the association with patient neglect and health outcomes,

iii) the relative importance
of system and organisational factors in causing neglect, and

iv) the design of interventions and health policy to
reduce patient neglect.
Keywords: Neglect, Patient safety, Caring, Organisational culture, Systematic review
Background
Patient neglect, defined as “the failure of a designated care giver to meet the needs of a dependent”

1, has become an issue of concern in both North America and Europe

[2,3]. In the UK, this has been driven by media outlets

[4,5], charities

[6], and health regulators
[7]. Headlines such as “Want to know the NHS’s real problem? Ask a nurse for a bowl of cornflakes”

[8], “Shamed hospital accused of leaving dying patients to starve”

[9], and “Can patient neglect be a violation of
human rights?”

[10] capture concerns relating to patient neglect. They reflect public anxiety, with patients and
families making 22,845 complaints to the NHS in 2011on issues relating to staff attitudes, communication, and patient dignity

[11]. Senior politicians acknowledge the issue, and argue that neglect has been “hidden away”
[12] and that healthcare institutions must ensure “every
patient is cared for with compassion and dignity”

[13].Solutions include “reducing stifling bureaucracy” [14],
ensuring nursing staff talk to patients at least “once an
hour” [13], utilising legislation and regulation to ensure staff consider patient’ “wellbeing and dignity”

[15], and making staff sign-up to a “code of conduct” on dignity
and respect

[16]. The solutions reflect a belief that healthcare staff are responsible for instances of patient * Correspondence: t.w.reader@lse.ac.uk
Institute of Social Psychology, London School of Economics, Houghton
Street, London WC2A 2AE, UK
© 2013 Reader and Gillespie; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the
Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use,
distribution, and reproduction in any medium, provided the original work is properly cited.
Reader and Gillespie BMC Health Services Research 2013, 13:156
http://www.biomedcentral.com/1472-6963/13/156
neglect, but they are also contradictory (e.g. reducing
bureaucracy to free staff from form-filling whilst simultaneously increasing bureaucracy to ensure staff care for patients properly), or involve regulating aspects of behaviour that are difficult to measure and assumed to be lacking (e.g. compassion). These contradictions reveal the lack of a clear understanding of the nature and causes of patient neglect.
High-profile scandals have made patient neglect a key issue for policy makers. Scandals have included patients being regularly physically (e.g. left malnourished, dehydrated, in pain, and unwashed) or emotionally (e.g. being ignored whilst in need, not shown compassion, loss of dignity) neglected by healthcare staff [17-20]. Linking patient neglect to specific metrics of patient harm or clinical outcomes is difficult due to the often complex conditions of patients and their treatment [21]. Furthermore, conducting research is challenging due to the toxicity of the subject (e.g. questioning the abilities, motivation and ethics of staff ) and a media narrative which seeks to blame rather than understand why poor care occurs [22,23]. However, cases such as the Mid-Staffordshire NHS Foundation Trust scandal, where routine and basic failings in care resulted in up to 1,200 patients deaths between 2005 and 2008, show the catastrophic implications for patient care when neglect becomes systemic across an organisation [21,24].
Researchers in medicine, health sciences, and psychology have for some time investigated how institutional processes, clinical environments, and the behaviour of healthcare staff influence patient safety [25]. These investigations have resulted in interventions (e.g. team-training, care bundles, skill validation) to reduce medical error and improve clinical outcomes [26]. Although they might be expected to reduce patient neglect, it appears necessary for practical (e.g. to meet public and political concerns)
and conceptual reasons (e.g. to develop suitable interventions) to distinguish patient neglect from unintentional error, or intentional abuse. This is because reports on neglect such as those cited above often refer to: i) staff behaviours that may not directly lead to patient harm (e.g. not aiding patients to go to the toilet), but are crucial for care and probably do not reflect a competency gap; ii) staff attitudes and behaviours towards patients that cannot be regulated or easily measured (e.g. compassion); iii) a mixture
of causal factors leading to patient neglect, some of which indicate neglect to be unintentional (e.g. due to a lack of resources) or alternatively not related to error (e.g. rudeness) [27]; iv) differing beliefs between patients, families, and staff as to whether neglect has occurred (e.g. for loss of patient dignity) and the causes of neglect; and v) breakdowns in institutional structures (e.g. communication between staff and management) that are a prerequisite to introducing interventions to improve care [26]. This article reviews the research literature on patient neglect, and interprets this work within the framework of organisational and social psychology. This structure is utilised in order to reflect the observation that patient
neglect emerges from a complex mixture of organisational (e.g. resources, management) and social factors (e.g. relationships between patients and healthcare staff ). In particular, the interactions and perspectives of staff and patients appear especially important for understanding when and why neglect occurs. The overall aim of the review is to contribute to the public dialogue and academic understanding of neglect. Its specific objectives are to:
1) Review what is meant by patient neglect, and
consider how it differs from other constructs
relating to poor patient care.
2) Describe the staff behaviours reported in studies of
patient neglect.
3) Examine how healthcare staff and patients perceive
neglect (and whether there are differences).
4) Identify the causal factors commonly cited as
leading to instances of patient neglect.
Method
This is the first literature review on the nature and causes of patient neglect. Accordingly no protocol exists to guide the review, so standard protocols for literature review were applied [28]. The eligibility criteria were articles or reports published in English reporting primary data, since 1990, on the occurrence or causes of patient neglect anywhere in the world. In the first instance, the search for articles on patient neglect was framed using Lachs and Pillemer’s [1] (p.437), widely used definition (in reference to neglect of
elderly patients) of “the failure of a designated care giver to meet the needs of a dependent”. From this perspective, patient neglect is behavioural (intentionally or unintentionally failing to meet the needs of a caregiver). The information sources, search terms used, and study selection procedure are outlined in Figure 1.
To evaluate the methodological quality of the research studies, we applied the SIGN system [29]. This provides ratings through which to assess the quality of data collected in quantitative and qualitative studies. The assessments for each study are reported in Table 1, with the quality ratings being the following:
1++: High quality meta-analyses, systematic reviews of
RCTs, or RCTs with a very low risk of bias.
1+: Well-conducted meta-analyses, systematic reviews,
or RCTs with a low risk of bias.
1-: Meta-analyses, systematic reviews, or RCTs with a
high risk of bias.
2++: High quality systematic reviews of case control or
cohort or studies. High quality case control or cohort
Reader and Gillespie BMC Health Services Research 2013, 13:156 Page 2 of 15
http://www.biomedcentral.com/1472-6963/13/156
studies with a very low risk of confounding or bias and
a high probability that the relationship is causal.
2+: Well-conducted case control or cohort studies with
a low risk of confounding or bias and a moderate
probability that the relationship is causal.
2-: Case control or cohort studies with a high risk of
confounding or bias and a significant risk that the
relationship is not causal.
3: Non-analytic studies, e.g. case reports, case series.
4: Expert opinion.
The following data extraction exercise was performed.
First, the meaning of neglect was reviewed in each paper. Second, behaviours identified in studies of patient neglect were identified. Third, frequencies of neglectful behaviours reported by healthcare staff, patients, and families were captured. Fourth, causal factors identified
by articles and reports as contributing to instances of patient neglect were extracted. This included the capture of both qualitative data (TR) and quantitative data (AG).
The extracted data were not amenable to meta-analysis due to a mixture of qualitative and quantitative studies being identified. Consistent with similar reviews of literature with mixed forms of data, a narrative analysis was used to synthesise the findings of the review [30,31].
Results
Figure 1 reports the results of the literature review. Ten
research articles were included, with data largely collected in Scandinavia, South Africa, and the US. The
majority of articles used survey methods to measure
staff, family, or patient observations of neglectful behaviours [32-39]. Two qualitative papers investigated staff
perceptions of patient neglect [40,41], and patient perceptions of neglectful behaviours were also of interest
[39,42]. Several studies were conducted in elderly care.
The hand search identified four qualitative UK government reports investigating patient neglect at both individual and unit/hospital level [24,43-45]. Many discussion articles (e.g. on legal issues) and studies of related topics (e.g. patient dignity, ethics) were also identified, and were informative in understanding what is meant by patient neglect. However, they were not included in the review due a lack of relevant primary data focussing explicitly on patient neglect. The number of studies and reports seems to be increasing rapidly, with 8/14 (57%) being published between 2009–2012.
In comparison to the other literatures linking behaviours and outcomes in healthcare (e.g. medical error) [46], the number of studies investigating neglect is limited, and data was mostly descriptive. Quantitati

Doing No Harm: Enabling, Enacting, and Elaborating a Culture of Safety in Health Care
Author(s): Timothy J. Vogus, Kathleen M. Sutcliffe and Karl E. Weick
Source: Academy of Management Perspectives , November 2010, Vol. 24, No. 4
(November 2010), pp. 60-77
Published by: Academy of Management
Stable URL: https://www.jstor.org/stable/29764991
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Academy of Management is collaborating with JSTOR to digitize, preserve and extend access to
Academy of Management Perspectives
ARTICLES
Doing No Harm:
Enabling, Enacting, and Elaborating a Culture of Safety in Health Care
by Timothy J. Vogus, Kathleen M. Sutcliffe, and Karl E. Weick

Academy of Management is collaborating with JSTOR to digitize, preserve and extend access to
Academy of Management Perspectives This content downloaded from https://www.jstor.org/stable/29764991

Published by: Academy of Management
Stable URL: https://www.jstor.org/stable/29764991
Executive Overview
Medical error has reached epidemic proportions, and researchers have developed insufficiently sophisticated models of safety culture to match the complexity of the challenge of safety in health care. This has left providers and researchers with an inadequate conceptual toolkit for improving safety. To rectify the resulting crisis we consolidate fragments of management research into a comprehensive and integrative framework of how patient safety is produced and sustained through safety culture. Safety culture involves actions that single out and focus safety-relevant premises and cultural practices that reduce harm. This entails (a) enabling, which consolidates the premises for a safety culture; (b) enacting, which translates consolidated premises into concrete practices that prioritize safety; and (c) elaborating, which enlarges and refines the consolidation and translation. We close by discussing the implications of our framework for future research on key issues such as efficiency-safety trade-offs, interactions among components of the framework, and feedback loops. In the face of competing priorities (e.g., efficiency), organizations often inadequately prioritize safety relative to other goals (Perrow, 1984)* Although safety challenges plague many industries, the problem is especially acute in health care. Health care presents a challenging paradox by pairing the mandate to “do no harm” with mounting evidence that much harm is done in the course of delivering care. In 1999 the Institute of Medicine (IOM) released a report titled
To Err Is Human, in which medical error was citedas the eighth leading cause of death in the United
States (more than motor vehicle accidents, breast cancer, or AIDS), responsible for as many as
98,000 deaths annually (IOM, 1999). A 2002 report by the Centers for Disease Control (CDC)
stated that almost 2 million Americans acquire infections in the hospital, contributing to those
98,000 deaths each year. More specifically, 48,600 central-line bloodstream infections occur annu?
ally, with one third of those patients dying (Buerhaus, 2007). Additionally, an estimated 2% to 4%
of patients (between 670,000 and 1.3 million) fall during their hospitalization in the United States
annually, with 2% to 6% of those falls (13,000 to 78,000) resulting in injury. In sum, as many as 88
people out of every 1,000 will suffer injury or Timothy J. Vogus (timothy.vogus@owen.vanderbilt.edu) is Assistant Professor of Management at the Owen Graduate School of Management, Vanderbilt University.
Kathleen M. Sutcliffe (ksutclif@umich.edu) is the Gilbert and Ruth Whitaker Professor of Management and Organizations at the Stephen M. Ross School of Business, University of Michigan.
Karl E. Weick (karlw@umich.edu) is the Rensis Likert Distinguished University Professor of Organizational Behavior and Psychology at the Stephen M. Ross School of Business, University of Michigan.
Copyright by the Academy of Management; all rights reserved. Contents may not be copied, e-mailed, posted to a listserv, or otherwise transmitted without the copyright holder’s express written
permission. Users may print, download, or e-mail articles for individual use only.
We would like to thank AMP Editor Garry Bruton, Peter Cappelli, Ranga Ramanujam, Jen Vogus, and two anonymous reviewers for thoughtful and constructive comments that substantially improved the quality and contribution of this manuscript. We also thank Aidan Vogus for helping us see the importance of this work.

https://wordpress.com/post/revelationsuk.com/176053654

My blog on this subject is attached above, featured recently.

As regards the CQC’s SOAD that Ms Munro refers – as she cannot answer that question I will answer it myself. Never has a CQC SOAD looked into matters properly and even at times agreed with the Trust and Care Home when concerns are raised. They allowed the prescribing of Risperidone, prescribed at Reservoir House Supported Living despite allergy to this drug clearly pointed out to them. They allowed inaccurate prescribing ie 1.75 mg Risperidone which no-one, not even me could cut properly. They have allowed drugging of Elizabeth to enormous quantities whilst at Elysium which clearly did not work. They have ignored the fact she is “treatment resistant” which means poor/non metaboliser and not one of them recommended MRI scans or pathological tests to check for underlying causes when it was obvious none of the drugs worked. I do not feel they even bother to properly look at past file records. Most recently they have ignored the fact that LPFT do not use PANSS recommended by RCPSYCH. Most recently they have ignored or were uninformed that Elizabeth had private scans done which were NOT normal and need further verification OR, if they saw the recent scans done under Lincolnshire United Hospitals Trust they do not have a Tesler 3 which makes my private scans highly accurate. This puts everything in question because of the frequent episodes, stated to be partly blamed on myself.

No, I repeated that Elizabeth feels she is being abused and said this many times during supervised visits. These are Elizabeth’s words, not mine, but how can I disagree when she is being treated differently from everyone else and more like a restricted prisoner.

As for ward round meetings, I am supposedly allocated a 10 minute slot, whereas I should be invited to the whole of the ward round. Quite often I have sat there in front of the computer to no avail and no-one has let me into the Teams meeting or advised that this has been cancelled. I have been studying on a course for some weeks and so have not been able to attend lately but it is clear nothing has changed re the restrictions despite the comments of Ms Munro in her letter.

Yes I did state that the taking away of the mobile phone the family pay a contract on is a breach of Elizabeth’s human rights and ours – the family. The phone contract with Vodafone is only £13.61 pm but it is only right that LPFT should refund every penny whilst they continue to place the mobile into Elizabeth’s locker making it impossible at times for family to get through or for Elizabeth to enjoy listening to music or seeing the comforting pictures of her cat. This whole thing was done before under Dr Shahpasandy under Ash Villa run by LPFT. This carried on for weeks on end and no-one could get through on the phone. It most certainly is an infringement of everyone’s human rights and restrictions are very clearly still in place re supervision, no leave granted and only restricted visitors which does not allow for any quality time after all this length of time. At Ash Villa Elizabeth kept calling the Police in desperation. Don’t know if she has tried to do that here on Castle Ward but this punishment is all aimed at me. It is definitely punishment as I see it because the rest of the family/friends are not subject to any restrictions on visits but are still affected re the phone locked away. Because no impact assessment has ever been carried out as per NHS Guidelines this does not only have an impact on me but others in the family that LPFT have not even considered and Elizabeth herself. What has taking away the phone got to do with engagement with staff? From what I understand Elizabeth is asleep most of the day and up at night so it would not be affecting her ability to participate in any ward round meetings or activities on the ward. What treatment plan! They do not use the recommended PANSS. Elizabeth should be given a copy of her care plan. There is clearly no discharge plan of any kind and acute ward detention on a never ending section continues now for over 2.5 years with no end in sight. Now Ms Munro goes on to state the following:

“ELIZABETH’S PHONE ACCESS WAS LIMITED FOR A FIXED PERIOD OF TIME AS PART OF A COMPREHENSIVE CARE PLAN THAT CONSIDERED HER HUMAN RIGHTS. THIS WAS TO ENSURE THE RESPONSE TO HER PHONE USE DID NOT ADVERSELY IMPACT HER ENGAGEMENT PLAN WITH, OR THE EFFICACY OF THE TREATMENT PLAN. THIS WAS CEASED ON MONDAY 5 FEBRUARY 2024 FOLLOWING REVIEW OF ALL THE RELEVANT FACTORS.”

So, first of Elizabeth why is she still without her phone as it is held in her locker so that she cannot access at all times as she does not have the key. The ban (not limitation) has been ongoing for months now and it has been extremely difficult for all of us to contact her even the family members and friends were not put through immediately as a member of staff had to be available to go and unlock her locker and hand the phone to her or else in my case only for two members of staff to sit there listening in to all phone calls which is in breach of Art 8 HRA and the Equality Act 2010. I honestly truly do not know what on earth Ms Munro means by stating “care plan that considered her human rights”. This is absolute rubbish and I believe that not only do LPFT need to implement the Oliver McGowan Training Programme but it is no wonder there is no sign of that if they do not understand what basic human rights are and what is meant by acting ultra vires, relying on Bolam Law when it should be Montgomery – all hiding behind each other as regards decision making. Of course this is a breach of human rights as not having the phone or being readily able to access it whilst held under MHA 1983 and is an abuse of power and process as well as the law. What right do a public authority have to do this and this is NHS care. For a short while Elizabeth was sent to Cygnet Durham. At first she did not have her phone but then this was given back to her as at least Cygnet realised this was in breach of the law unlike the NHS. Under the MHA detention should be the least restrictive care. The most untruthful comment Ms Munro makes is that restrictions ended on 5 February. So what I did was take with me the letter to show Elizabeth. I was told by the two HCAs that I could not just give the letter so I said “why not”? They said they had to show the manager first (I then said Oh I see the Management are involved in all this?) The Manager to Castle Ward is Kashmir Moons. So they took the letter from me. I read the contents of the letter before I gave it to them. I asked that they hand the letter back to Elizabeth and will check she has it when I next have contact. Contact is only if Elizabeth asks for the phone but I get the impression she is asleep a lot during the day and up late at night. This would explain why meals continue to be missed.

Ms Munro then goes on to mention an “incident” on Xmas Day for which internal investigations and review of all relevant evidence was undertaken and following that re-establishing of prior arrangements.

This is NOT GOOD ENOUGH MS MUNRO. For a start there was no incident whatsoever but Elizabeth got upset with the second lady – a HCA told to sit in the small visitor’s room on Xmas Day of all days and write notes. It was the writing of notes that got Elizabeth upset and she reacted. I had also found out that the Clopixol depot had been reduced by 50mg and I was told to leave the ward when a crowd of about 5 staff gathered outside the visitor’s room including men which was very intimidating. When I left the visitor’s room all Elizabeth did was to shout and they grabbed her throwing her into seclusion and injecting her afterwards. Why inject when all someone needs to do is to calm down but they tend to do this after every ‘episode’ that looks like a fit. Why rapidly tranquilise when she has calmed down. Xmas Day was ruined and spoiled and I did not know they called the Police on me. When I found out I opted to complete a S9 statement but I doubt anyone from the Trust did that and they should have been asked to do after all to call Police out for no reason is very bad. All this is being done to intimidate and threaten using Police as a weapon when in fact Elizabeth trusts the Police more than MH professionals and regarded them as “friends”.

So this has justified the banned visits whilst internal investigations took place. Not one apology given in her letter.

Ms Munro goes on to explain about the Neurologist Appointment being unattended but what Ms Munro does not know is that I in fact attended with a copy of the private scans done on a Tesler 3 scanner. I knew about the appointment because Elizabeth told me and shared her letter with me. Again the MH were keen she did not attend by the looks of it. They have done everything to stand in the way of her Neurologist appointments but I met the Consultant Neurologist myself. I knew that scans were done in addition by the Trust in November 2023, Mine were done end of May 2023. What I did not know at the time was that they did not have a Tesler 3 but a 1.5 scanner so it is no wonder their scans are not accurate as opposed to mine. What I am concerned at was their response. The Clinical Lead Emily Scott said they had no knowledge of the Neurologist appointment and this was at 11.00 am so I bet Elizabeth was asleep and no-one got her up for it. Now they propose a further scan in Sheffield because they do not have the latest scanner when I have produced scans done privately under a Tesler 3. “This aspect of Elizabeth’s healthcare is ongoing”. Good – glad to hear it since all this should have been done upon arrival but the team were too busy trying to take away my role as POA and NR to consider physical health needs.

Regarding the telephone call where a new staff member had limited English, I only went by what Elizabeth said when I asked to speak to the new member of staff over the telephone. This might have been just an excuse on the other hand.

Concerns on Missing Meals – yes Adults safeguarding were supposed to look into this and the ward is supposed to keep daily food and fluid chart to document intake. At Ash Villa this was a frequent occurrence but I still think missing meals goes on as if Elizabeth is frequently rapidly injected then she is asleep during the day or cannot get up for meals and misses them and in the evening there is just a sandwich. I am not saying this is happening now on a daily basis like before however it still does occur and again laundry – this is what she was doing herself in her flat without support. This is the level of decline that now Elizabeth needs someone to help shower her, do her washing etc etc whereas before she was doing this herself and even using a bank card, going shopping, using buses whilst in her independent flat. Substantial decline because of her treatment worse than a restricted prisoner. These comments again came from Elizabeth who said she had run out of clothes but staff do not seem to understand autism. There is no sign of the Oliver McGowan Training and the other day when we visited she told me that Dr Khokhar said “you have not got autism” – I pointed out to the two staff supervising that autism was what Elizabeth had researched as her condition and should be respected – after all there is no end of evidence and every screening came out positive by other institutions and other doctors. I, on the other hand think there is brain injury which may have been present before under Enfield and covered up as it says on the discharge note “abnormal findings on scan pointing to cns”. Since then there have been 10 doctors (psychiatrists) keen to treat as a MH patient and ignore the discharge note and private scans up until the frequent life threatening episodes which resulted in A&E to the point this could no longer be ignored.

“We aim to provide high quality care and treatment to all those we support and are sorry you have had to escalate your concerns. We value opinions of those who use our service as it gives us vital insight into any care we provide and informs us when improvements are necessary. We thank you for raising these concerns.”

Taking the above into consideration here are the improvements:

Stop taking the phone away and using this and restricted visits and cutting of leave as an excuse unless someone fits the criteria of s11:15 MHA Code of Conduct. Elizabeth is an Adult and should not be treated this way and also you are in breach of Art 8, Art 5, Equality Act 2010 plus Art 3.

You should settle up with the phone bill and thinking about it the private scans that were accurate unlike those done under a 1.5 scanner.

You should allow leave/visiting rights to resume unrestricted and give the phone back to Elizabeth to keep in her handbag like everyone else.

You have discriminated against us as a family, not just Elizabeth that has impacted against even those not being punished ie other members of family.

Elizabeth misses her cat and wishes to come home to visit and to live. You have been looking at care homes in W Sussex and Yorkshire without any thought to rest of family.

I have had serious verbal threats of indefinite banning of visits at a Ward Round in December because of flawed allegations of some kind of incident when nothing happened except for police time to be wasted.

I have presented you with an invoice and would appreciate prompt settlement. I shall do either an additional or amended invoice to include the private highly accurate scans seeing as they were needed in the first place. It is therefore only fair that the Trust pays.

There is no sign of the Oliver McGowan Training? Where is this training?

There is no sign of proper diagnostic tool PANSS and why not when recommended by RcPsych?

The way you have handled everything has been a disgrace. To try to take away the POA. You failed at this.

To try to displace me you used County Court and did so in secret. Secret courts should be banned. This is of public interest as it is public money. The law needs to be tightened so that there is more accountability which could save vast amounts of public money at County Courts where Judges do not have the remit to properly look into matters.

To present papers and to keep getting HCAs to report negatively against me is bullying and I am entitled to see everything written against me.

It is wrong to treat me differently to rest of family and I should say this is clearly discrimination.

The ward is very noisy and this affects Elizabeth along with the very highly bright lighting.

The CQC should look into the legality of the Section 3. It is more like a Section 37/41. What right do you have to hold Elizabeth like this and treat her like a vegetable when each and every one of the capacity assessments are flawed. I should know as I have done the course. She was not even on a section in the former area so how do you explain this?

As for the MHA this needs urgent amended because Trusts and Councils like Lincolnshire and Enfield/Barnet Enfield and Haringey MH Trust have found a way to twist the law to their own ends and use social services against you and they abuse the MCA which I have studied thoroughly in order to take away a vulnerable patient’s autonomy when they have got capacity.

I now want all the files from both records and everything written about me so that I can correct everything which might take me years and years to do. How can you give decent care if your records are untruthful and inaccurate.

I have now highlighted the need for a new scanner in two areas – Lincolnshire and Weston. This is essential to ensure proper diagaosis.

The last thing I am going to point out is about Capita doing the assessments for PIP. I explained that Elizabeth was still in hospital, not in receipt of PIP and declining. If a vulnerable person got a call like this it would be extremely upsetting. I now have an appointment for an assessment coming up shortly.

It is important for anyone having an MRI scan to check which scanner their Trust has as I have wondered why the scans at Lincoln County Hospital have not shown up the same details as the scans I had done privately and now I know why. I have found out that they use a 1.5 Tesla scanner.

I immediately contacted my MP, Victoria Atkins to advise that Lincoln United Hospital Trust should be provided with the most accurate scanner which to my knowledge is the Tesla 3.

I am just warning everyone to check and question in order to ensure they receive highly accurate scans.

I have found out that the following:

Diagnostic imaging department at The Lincoln Hospital, Lincolnshire offers a wide range of diagnostic tests and imaging examinations.

All imaging is processed using electronic technology known as CR (Computed Radiography) and PACS (Picture Archiving and Communication System) which enables fast, electronic display of all images and reports. 

At The Lincoln Hospital diagnostic imaging equipment is used that includes a wide bore 1.5T MRI scanner, ultrasound and a mobile 64-slice CT scanner (available every other Tuesday).

The diagnostic imaging department at The Lincoln Hospital offers the full range of routine and specialist services including: 

• Abdominal Aortic Aneurysm Screening
• CT scanning
• Fluoroscopy – theatre 
• MRI scanning 
• Out-patient cardiology diagnostics including, echocardiograms, exercise ECGs and heart monitoring 
• Plain film radiography 
• Ultrasound 
• X ray

The main difference between a 1.5 Tesla (T) MRI scanner and a 3 Tesla MRI scanner lies in their magnetic field strength.

1.5 Tesla MRI scanners have a magnetic field strength of 1.5 Tesla, while 3 Tesla MRI scanners have a magnetic field strength of 3 Tesla.

Here are some implications of this difference:

1.     Image Quality: Generally, higher magnetic field strength (such as 3 Tesla) can provide better image quality compared to lower field strengths like 1.5 Tesla. This higher field strength can lead to increased signal-to-noise ratio, which results in clearer and more detailed images.

2.     Resolution: With higher magnetic field strength, there’s potential for higher spatial resolution, allowing for more detailed imaging of structures within the body.

3.     Scan Time: In some cases, higher field strength MRI scans may require shorter scan times to achieve comparable image quality to lower field strength scans. This can be beneficial for patients who may have difficulty remaining still for long periods.

4.     Cost and Availability: Generally, 3 Tesla MRI scanners are more expensive to purchase and maintain compared to 1.5 Tesla scanners. Additionally, they may not be as widely available as 1.5 Tesla scanners in all healthcare facilities.

5.     Clinical Applications: Both 1.5 Tesla and 3 Tesla MRI scanners have their own set of clinical applications. 3 Tesla MRI scanners are often preferred for certain types of imaging studies such as neurological imaging (brain and spinal cord), musculoskeletal imaging, and research applications where high-resolution imaging is crucial. However, 1.5 Tesla scanners are still widely used and may be preferred for certain clinical scenarios where higher field strength may not be necessary or may pose additional risks.

In summary, while both 1.5 Tesla and 3 Tesla MRI scanners serve the purpose of imaging internal structures of the body using magnetic resonance, the difference in magnetic field strength results in variations in image quality, resolution, scan time, cost, and clinical applications. The choice between the two depends on factors such as the specific imaging needs of the patient, availability of technology, and clinical judgment.

Surely the needs of the patient is paramount in terms of the provision by every Trust of the Tesla 3 scanner to ensure without doubt that they get the most accurate scans and I have therefore proven that the current 1.5 Tesla scan done by the hospital has missed vital details that need verification and checking out because I had a private Tesla 3 scan done for Elizabeth. I have told my MP that a Tesla 3 scanner is urgently required at Lincolnshire United Hospital Trust.

What makes this letter so untruthful is that the mobile phone is still held in the locker, locked away and only supervised calls and visits are allowed by the truly awful Lincolnshire Partnership Trust rated “GOOD” by the CQC. If restrictions had ended on the 5th February as Ms Ann Munro states then why are they still continuing on the ward in that case or why hasn’t this been relayed to the ward? Dr Waqqas Khokhar and team continue relentlessly with restrictions that are a complete infringement of Human Rights – breach of Art 8 and Equality Act 2010. The restrictions are ONGOING and it was threatened by Elizabeth’s doctor that the ban was indefinite. I have issued LPFT an invoice that is only £50 for the phone contract family pay to Vodafone monthly and the cake I brought for Elizabeth’s Birthday that got put in the bin. It seems like noone is doing anything about anything and all staff acting ultra vires. Yesterday as I have to be seen to be doing everything I can to resolve matters I chased up the investigations I called for under the NMC, GMC, ICO and HCPC – Adults Safeguarding have concluded their investigation but a couple of days ago Elizabeth phoned me and said she had missed meals and only had crisps to eat. This all goes to show that the “care” Elizabeth is receiving is not right or appropriate and that acute wards are totally unsatisfactory to anyone with sensory issues and those who claim or have been diagnosed to have autism, LD so in that case why are so many trapped for years and years on end.

The reason is not because there is nothing in the community but it is all down to funding. We did not ask for anything but had hoped for a better life in a new area. Inevitably the outcome is disablement and then that vulnerable person becomes institutionalised for the rest of their lives and placed under DoLs – another form of imprisonment. Stripped of their capacity, human rights do not apply.

Now there needs to be more done as what the NHS is providing is totally wrong and the way they go about bullying families with litigation lasting months and months in secret courts is totally and utterly wrong.

If Ms Munro claims that the restrictions have ended with the phone then this needs to be sorted out as members of staff were/are oblivious to this. There seems to be lots of bank staff supervising and they use HCAs and they are writing negative notes to build up a picture against me. It is the ultimate bullying. I now take a witness with me because they keep calling out the Police and wasting their time in desperation to portray me as a nasty person but I am being totally honest here revealing the truth and nothing but the truth. There is no way I would be going to these lengths publicly if I was not speaking the truth and from what I see I am not alone with others writing about the shameful care provided under MH in the UK that has no accountability. They have also gone out of their way to stand in the way of pathological tests and referrals to Neurologist which was on 3 January but I was told by the Clinical Lead Emily Scott that they knew nothing about this appointment. Oh yes they did! I attended instead with the private scans done under a Tesler 3 scanner which Lincolnshire do not appear to have and which are highly accurate.

Here is the letter:

LINCOLNSHIRE PARTNERSHIP

FOUNDATION TRUST

Patient Experience Team

The Point

Unit 9

Lion’s Way

Sleaford

Lincolnshire

NG34 8GG

Tel: 01529 222265

 Email: LPFT.PALS@nhs.net

Our Ref: SER/23/2717

CQC Ref: ENQ1-18383246613;

ENQ1-17716124293

19th February 2024

PRIVATE AND CONFIDENTIAL

Mrs S Bevis Sent via email:

Dear Mrs Bevis,

I write to respond to the queries and concerns you shared with the Care Quality Commission (CQC) between 14th November 2023 and 28th December 2023; You said that the SOAD (second opinion appointed doctor) did not take account of Elizabeth’s allergy to a medication. We are unable to answer points related to the decisions made by the SOAD as they come under the remit of the CQC.

You said you are concerned that Elizabeth is being abused. Investigations into Elizabeth’s safety have been initiated and the trust are cooperating with these as requested.

You claimed that on occasions you had not been allowed into the ward round meetings.

The ward confirmed that you have the link to attend a designated slot for the weekly ward round meeting. They have noted occasions where you have not joined the meeting.

You have said that Elizabeth having her mobile phone removed is a breach of her human rights. Elizabeth’s phone access was limited for a fixed period of time as part of a comprehensive care plan that considered Elizabeth’s human rights. This was to ensure the response to her phone use did not adversely impact her engagement with, or the efficacy of, the treatment plan. This was ceased on Monday 5th February 2024 following review of all the relevant factors.

You claim that details recorded of the incident that took place on 25th December 2023 during your visit to Castle Ward are untrue and have resulted in your visiting arrangements being suspended. Visiting arrangements were temporarily suspended while internal investigations and review of all relevant evidence were undertaken and that visiting arrangements have now been re-established, as set out in letter dated 5th February 2024.

You said that Elizabeth was not able to attend the neurology appointment in January 2024. Elizabeth was not able to attend a neurology appointment in January 2024, however following discussions with professionals at United Lincolnshire Hospitals Trust, alternative provision was facilitated so that the relevant clinical staff could attend Castle Ward to see Elizabeth. This was organised to minimise any disruption to Elizabeth and maximise her potential engagement with the process. This aspect of Elizabeth’s healthcare provision is ongoing.

You described a telephone call to the ward where a new staff member had very limited English. Your feedback on this staff interaction has been passed on to the relevant teams to ensure any necessary reviews are undertaken. You expressed concern that Elizabeth was missing meals which was impacting on her behaviour.

The ward is continuing to keep a daily food and fluid chart to document Elizabeth’s intake. This also ensures any additional support can be provided to Elizabeth where appropriate. You said that Elizabeth had lots of washing and that she was not being supported with this. The ward has confirmed that Elizabeth is usually known to attend to her own laundry independently. Patients can access the laundry room at any time in the company of staff and Elizabeth can request support from staff for this purpose. We aim to provide high quality care and treatment to all those we support, and we are sorry that you have had to escalate your concerns.

We value the opinions of those who use our service as it gives us vital insight into any care we provide and informs us when improvements are necessary, and we thank you for raising these concerns.

Thank you for bringing your concerns to our attention. LPFT mental health services strive to deliver the best care to all our service users and their families/carers all the time and I regret this has not been your experience. NHS Complaints Advocacy is also available at every stage of the complaints process.

VoiceAbility can be contacted by calling their Helpline on 0300 303 1660 or via email helpline@voiceability.org If you are not happy with how we have dealt with your complaint and would like to take the matter further, you can contact the Parliamentary and Health Service Ombudsman. The Ombudsman makes final decisions on complaints that have not been resolved by the NHS, Government departments and some other public organisations. Their service is free to everyone. There is a time limit for making your complaint to the Ombudsman so you should do this as soon as possible.

To take a complaint to the Ombudsman, or to find out more about the service, go to https://ombudsman.org.uk/making-complaint or call 0345 015 4033. Yours sincerely, Checked and electronically signed to speed delivery.

Ann Munro Patient Safety Lead

 cc: Care Quality Commission (Central)

Citygate,

Gallowgate,

Newcastle Upon Tyne NE1

Extracts of  Letter from Sarah Connery, CEO  Trust HQ, St Georges Long Leys Road, Lincoln  lN1 1FS

“This is a complex case involving ongoing and intersecting legal and complaints procedures.  There have been involvement from multiple organisations in managing this case including Care Quality Commission, Lincolnshire Police, Lincolnshire Integrated Care Board, Lincolnshire County Council’s Safeguarding and Legal Services, LPFT MHA and Legal Services Team in addition to the Patient Experience Team and Safeguarding Team.”

There is no complexity.  Elizabeth has somewhere to live and wanted to move in 2021.  She was living in a high rise block of flats without support.  A meeting was held with the CMHT before moving but treatment not continued through no fault of mine. She was being reduced off it due to discharge note stating “abnormal findings on scan” in any case.   Since October 2021 she was taken and imprisoned in 5 institutions with 10 doctors involved.   Treated like a restricted prisoner, no leave, restrictions on visitors, phone confiscated and family contact discouraged, this has been “care” under Lincolnshire Partnership Trust to date. Months of investigation by Public Guardian Office following malicious allegations of abuse by various professionals found in our favour.   With so many agencies involved you would think that something would have been done about this situation by now and that there would be an end in sight but the abuse continues with no end in sight.   There have been months of legal action against me as though I was a criminal at County Court with involvement of Lincolnshire County Council to achieve the goal of displacement of NR only for me to become NR again thereafter to another family member.  All along there was mention and threat of placement into care without any respect for my daughter’s wishes or that of her family. The little bungalow remains empty that could have provided happiness to my daughter in the right environment of the small community where I now live close to sea and wildlife reserves and peaceful unlike an acute ward.

Ms Connery mentions my blog and that I wrote 70 emails.   I don’t know where she gets that figure from –  as if I had time to write so many!  During many months of court proceedings against me I received an email from Ms Anita Lewin who held overall responsibility: it was not of best interest to respond to complaints.  LPFT have now set up an email address where I am supposed to write to but responses I have received are not related to my complaints which remain unanswered for the most part. I have had one letter after another banning me from visiting without any alternative arrangement in place. Ms Connery refers to “due to concerns from the patient’s MDT made on clinical grounds in line with MHA Code of Practice 2015 shouldn’t that be 1983? paragraph 11:14.  So here below is the MHA CODE OF PRACTICE 1983: – only part of 11:14 was mentioned – here is the rest:

Restrictions or Exclusion on Clinical Grounds

11.14	From time to time, a patient’s Responsible Clinician (Dr Waqqas Khokhar) may decide, after assessment and discussion with the MDT, that some visits could be detrimental to the safety or wellbeing of the patient, the visitor, other patients or staff on the ward.   In these circumstances, the Responsible Clinician may make special arrangements for the visit, impose reasonable conditions or, if necessary, exclude the visitor.   In any of these cases, the reasons for the restriction should be recorded and explained to the patient and the visitor, both orally and in writing (subject to the normal considerations of patient confidentiality). Wherever possible 24 hour notice should be given of this decision.     So from this it is in fact the Responsible Clinician’s decision but we have not had proper explanation re risks to others or patient???
Restriction Or Exclusion on Security Grounds
11.15	The behaviour of a particular visitor may be disruptive in the past, to the degree that exclusion from the hospital is necessary as a last resort.  Examples of such behaviour include:   Incitement to abscond   Smuggling of illicit drugs or alcohol into the hospital or unit   Transfer of potential weapons   Unacceptable aggression   Attempts by members of the media to gain unauthorised access. None of this applies
11.16	A decision to exclude a visitor on the grounds of their behaviour should be fully documented and explained to the patient orally and in writing.    Where possible and appropriate the reason for the decision should be communicated to the person being excluded (subject to the normal considerations of patient confidentiality and any overriding security concerns.  No this has not been done at all. What risks exactly and why to other patients and staff when I am not sitting in the lounge area but small visitors room elsewhere.

I would also point out that nothing was properly explained about the ban and no warning given.   Paragraph 11:14 was mentioned but not all of paragraph 11:14.   As you can see paragraph 11:14 states about making special provisions and explaining in full.  This was not done.  All we constantly hear is “it is an MDT decision”.   NO!  It is the decision of the Responsible  Clinician who is Dr Waqqas Khokhar.  Everyone else on the ward is dutifully acting upon instructions that are in total breach of the law and their own Code of Conduct.  It is astonishing why no one raises a hand to question what is going on as it is clearly detrimental to the patient and not conducive to her recovery. Elizabeth has even got upset by staff sitting there taking constant notes (no doubt writing in not a very nice way) behind my back. This happened on Xmas Day when staff called Police and tried to blame me.  

When you ban someone from visiting LPFT were supposed to carry out an Impact Assessment but this was not done.  The Impact Assessment should have been carried out on myself and Elizabeth with copy to her sister, NR who was LPFT’s choice to displace me in court last year.  No correct procedures were done.  Ms Connery mentions about impact “due to continued concerns about Elizabeth’s health and wellbeing and the need to protect the safety and wellbeing of staff and other patients on the ward” .   What is she talking about? What is meant exactly about the safety of staff and other patients? What is Ms Connery trying to imply that I am someone who has gone onto the ward with weapons, threatening members of staff when I have been in visitor’s rooms on the occasions when I was allowed to visit. Why was Police time wasted on more than one occasion? why are they using bullying tactics to intimidate me as a visitor? Ms Connery has simply repeated the malicious allegations coming from a person in charge who is reliant on MDT backing and without any substance or evidence.     When I visited Elizabeth there are little side visitor’s rooms and CCTV throughout to monitor behaviour of any visitors. So concerned were myself and a visitor that we opted to complete a Police Section 9 statement but Police were not even bothering to investigate a so called incident so ‘serious’ that a member/members of staff called Police on Xmas Day wasting their time.   It is totally unjustified to make out I am a risk in any way and to restrict contact getting staff to write nastily behind my back and that is what is upsetting to Elizabeth. Staff constantly writing notes. It is no doubt an abuse of power and process.   It is all done with the intention of making you feel intimidated and uncomfortable to go and visit.  During my visits, I spent time in the small box room of the visitor’s rooms not socialising with staff or patients on the ward itself.   Sometimes one other patient would knock on the door of the visitor’s room Elizabeth introduced me as her friend. This friend knew I always brought food and nice things onto the ward that Elizabeth would share but now all has stopped due to shortage of space in the fridge. It is unjustified of Ms Connery to say these comments and for me to have received an extremely nasty threatening letter alleging intimidation and aggression towards staff at Trust HQ when all I did was sit in a corner writing a note and the only person was a receptionist and the visit was witnessed by a friend.   I viewed CCTV footage and there was nothing to see relating to such behaviour as described in their letter.

“The second part of the complaint states: Ms Bevis is of the opinion that Elizabeth’s phone is being withheld indefinitely”   To Clarify, Elizabeth’s phone access and use is being managed in line with her care plan to protect her health and wellbeing as part of her mental health treatment.”   This has been going on for months now with no end in sight. We pay a Vodafone contact for the phone and it is only fair LPFT refund the money to Elizabeth in the circumstances.

Not having full access to her mobile phone means that Elizabeth can no longer listen to her music, see pictures of her cat readily and all phone contact numbers are in the phone so she cannot make calls to anyone and is encouraged to use their phone on loud speaker in the visitor’s room.  This is inflicting upon the rest of the family not just me.  It is abusive and inhumane to take away the phone from a vulnerable person held like a prisoner on never-ending sentence.  It is degrading and undignified to put members of staff supervising all calls, all visits etc. How would they like it?  This is not being done to protect my daughter but to protect themselves.

Ms Connery ends by stating “hope this letter provides reassurance around the care afforded to Elizabeth in regards to the concerns raised.”  No it does not and it makes you question all the more how someone in a high up position who is well aware of everything can just sit back and do nothing.

As for care, this is not care it is worse than prison and Elizabeth described this in her own words “HELL ON EARTH”.   That is what she thinks of LPFT’s “care”. The response from Maria Caulfield would put these comments into dispute.

LETTER FROM THE RT HON MARIA CAULFIELD MP

I have another letter from the Rt Hon Maria Caulfield MP  (Parliamentary Under-Secretary of State for Mental Health and Women’s Health Strategy 39 Victoria Street, London SW1H 0EU.  The letter is dated 8 February 2024 to the Rt Hon Victoria Atkins.

“As well as concerns about abuse, Ms Bevis wrote about potential diagnoses for her daughter which might affect her mental health and/or affect her capacity to make specific decisions although I cannot respond about the specifics I have set out some general rules and guidance which I hope Ms Bevis and her daughter may find helpful.” Not quite. They (the MH team) will not budge on “paranoid schizophrenia” yet Elizabeth constantly says she is autistic but there are certainly a lot of questions that need to be answered and it is not unreasonable to question when you have certain evidence to the contrary that needs thorough checking out.

My comments to the above are that with regard to potential diagnoses, pathological tests were denied to my daughter from the moment we arrived in Lincolnshire, whereas in London for the first time ever her physical health was being taken very seriously.  I had hoped for continuation of the same level of care into her physical health but sadly that has not been the case.  It should have all been quite simple – continuation of what was being done in former area but instead we have encountered nothing but bullying. All physical health appointments eg Neurology cancelled as “unnecessary.   The Discharge Note from Enfield mentioned “abnormal findings on scan” .  To date I have not been able to find out what was mentioned twice referred to.   This was drawn to the attention of the various psychiatrists Elizabeth under LPFT in particular at Ash Villa and Castle Ward but thought unnecessary to explore further pathologically reliant on a scan done back in 2015 stated as being “normal”.   This prompted me in a small window of opportunity to have private scans done through S G Radiology in a mobile unit that do not appear to be normal.   

“ The Government makes it clear, in the Care Act’s Care and Support Statutory Guidance, Local Authorities must ensure that the services they commission are safe, effective and of high quality.  Where anyone alleges poor care, neglect or abuse we expect those providing the service, local authorities and the Care Quality Commission (CQC) to take swift action. “    

Unfortunately, sadly this has never been the case which is why we moved from Enfield.  Once you complain this is where you see the ugly side of those supposed to care whether it be Trust or Council .Because care provision was non existent in former area and various supported living/housing and care home were appalling that is why I tried to provide a decent home for Elizabeth in the right environment which has backfired on me.   

Unfortunately in all this time the CQC have done nothing to stop the abuse in law/human rights and allowed continuation to date.  Letters I have received from two CQC inspectors are not emphatic and you never get to hear what if anything is being done about the situation.  One inspector described the CQC as a “business”.    When other patients step in to do the safeguarding as at Ash Villa something is very wrong and there is no accountability. What is the point of these organisations meant to protect vulnerable people when nothing appears to have been done.  They most certainly do not take swift action and have allowed the situation to continue.

One again I am hearing “if Ms Bevis is not satisfied with the way a provider or LA has dealt with a complaint she can escalate it to the Local Government and Social Care Ombudsman : I have done all that!   I had to even dispute their response which allowed for slight amendment but nothing done whatsoever.  he LG Ombudsman only wanted to investigate what happened prior to moving and that was not looked at properly. We had Judicial Review Solicitors appointed yet nothing was mentioned.  Another Joint Party Investigator was supposed to look at what happened once we had moved but this adviser refused stating it was purely a Health matter only for PHSO. Then the PHSO refused as they were waiting for everything in writing from the Joint Party Ombudsman.  In the end I simply copied their email to the PHSO but still they did not get involve.  Both cases were simply shut down without any proper investigation. My dealings with Professional Bodies have all appeared the same in that they are not there to safeguard the public but their own members and the “Professional Standards Authority” do not have powers to intervene.

“If Ms Bevis has not already done so she may also wish to seek independent legal advice and consider contacting the Citizens Advice Bureau which can provide help on a case-by-case basis.”  This is not helpful as they cannot help in what is clearly issues of human rights.  As for getting legal advice this is impossible –  you are simply met with the same response constantly that they have “no capacity”.  

Ms Caulfield also comments: “the Mental Capacity Act 2005 (MCA) is designed to protect and empower people who lack the mental capacity to make a decision themselves, which may include people with advanced dementia, autism, learning disabilities and acquired brain injury.  The Deprivation of Liberty Safeguards DoLs which form a key part of the Mental Capacity Act can be used to authorise the person being accommodated in a hospital or care home in circumstances the amount to a deprivation of liberty for the purpose of providing care or treatment.”

Here is my response: No it does not protect.

 If Elizabeth lacks capacity, as suggested their duty of care/standard of care in medical negligence is at a higher level.  Why is she being neglected on the ward to the extent that no one is even checking that she is being properly nourished? The LPFT and LCC are abusing the capacity assessment process to restrict or deny Elizabeth’s fundamental rights to patient autonomy to facilitate their own interests or convenience. This includes denying her rights to privacy and a family life by subjecting her to oppressive supervised visits.  The LPFT are abusing their powers under the Mental Health Act 1983 to deny Elizabeth and her family fundamental human rights, not in order to prevent or control risk or to achieve the objectives of section 2 of that Act but simply to benefit themselves and to obtain control to abrogate their actual responsibilities.

The MHA 1983 was designed to protect the interest of the mentally ill, not provide a convenient set of excuses for clinicians, nurses and social workers.

Unfortunately, Neither the MCA 2005 or the MHA 1983 is protecting the most vulnerable people at all.  The very people who should be caring towards my daughter are being abusive and denying my daughter and that of others the right to see their families unrestricted.  I suppose they go along with their orders by Responsible Clinicians because as I have experienced there is a culture of bullying within the NHS so no one dares speak out.

Ms Caulfield further states:

“Any restrictions placed on a person must be in that individual’s best interests and necessary and proportionate.  Consideration should also be given as to whether less restrictive options could be used.  An overview of the MCA and how it is applied can be found here:   www.scie.org.uk/mca.”

I have just completed a wonderful course through SCIE on mental capacity and “best interests” so I know very well that nothing LPFT are doing is in the slightest bit correct.

Re: displacement of NR previously covered, this shows overwhelmingly the need to update the MHA,   our case makes a mockery of the MHA and extortionate costs of litigation through presentation of untruthful reports and comments put before court. This is why courts should be open and transparent. I could write a book on it!.  The MHA is not fit for purpose and the MCA is also failing those who are vulnerable and their families.

Ms Caulfield mentions about my complaint of restricted visits and contact, In my case banning:  “contact with family and friends is a crucial part of a person’s care and no one should be denied reasonable access to visitors whilst they are a resident in a care home or a patient in a hospital or hospice”  “This includes having a loved one at a hospital bedside for a crucial diagnosis discussion, receiving assistance from a “care supporter” or simply going for a walk with a family member or friend.  The statutory instrument (SI) on visiting    (www.legislation,gov.uk/uksi/2023/1402/introduction/made laid on 18 December 2023 inserts a new fundamental standard on visiting and accompanying to the CQC regulations.  This will commence on 6 April 2024. Try telling that to LPFT, a law unto themselves.

About Elizabeth being sent to Durham, Ms Caulfield writes:   “inappropriate out of area placements (OAPs) occur when people are admitted to a mental health inpatient ward outside of their local area due to lack of available beds locally.  We remain committed to eliminating all inappropriate acute out of area placements for adults (people age 18 and over).  NHS England continues to work with the worst performing areas supporting them to improve, and we are working with them to ensure that systems prioritise this, including a focus on discharge and flow.  To support adult social care and discharge up to £2.28 billion has bee made available in 2023/2024 and £4.7 billion in 2024/25.  This can be used to support discharge from mental health inpatient settings, reducing bed occupancy and OAPs.

I hope this reply is helpful.

I would have liked action rather than words and intervention because there is no end in sight of the never-ending detention and abuse of my daughter; assessments have gone on behind out backs for a care home in West Sussex so very far away from all the family.   I am not alone and all of this is being done because I as mother has dared to question certain private scan results and my next blog will be all about that.

These are Elizabeth’s wishes:

FRIDAY 10^TH NOVEMBER 2023

“MY IDEA”  BY ELIZABETH BEVIS

“I WANT TO EVENTUALLY COME HOME TO LIVE WITH MY MUM IN THE ANNEX THROUGH COURT OF PROTECTION.  I MISS MY MUM GREATLY AND WANT TO GO HOME TO HER”

There is no way she would have written this if I was the person who a team of circa 30 try to make look bad and what on earth have they been writing behind my back to justify this and call Police out several times for no reason.  To think a team of 30 meet regularly and discuss you behind your back and then make the decision to stop contact because of concerns they do not make clear or is it really the team, rather than the person with overall control of the ward ie the RC. Nothing is being done to protect the public or the vulnerable person from such abuse. By going along with what is ordered by certain people at the top staff are acting ultra vires and breaking the law as well as their own Codes of Conduct.   They get away with it because their own professional bodies do nothing to intervene and because the Professional Standards Authority have no power to intervene. Also this whole situation would not be still ongoing if it were not for those at the very top of the Trust who choose to support rather than intervene the actions of certain professionals and allow the law to be broken.

It is Elizabeth’s Birthday on Monday. She is 37, her life and mine ruined by NHS/social services.  Police on the other hand have not acted unprofessionally towards us. All we have encountered under the NHS has dishonesty, bullying and cruelty. There is no sign whatsoever of the Oliver McGowan training. has been no decent communication towards us as a family. To deprive leave is cruelty. To take away every bit of enjoyment by locking away her mobile phone is cruelty. To pick on and bully a mother like me is nasty. I have been banned for months on end from visiting and am told I cannot visit the ward alone.  In any case I do not feel safe to step foot alone in that place any more as they have called the Police out so many times are reporting adversely- writing notes during visits and God knows what is being said behind our backs. This is all aimed at me because I have dared to challenge but everyone goes along with what they are being instructed. It is not out of concern for the patient it is brutal bullying – that is what we or rather I have encountered. I have requested records under Data Protection only for my requests to be ignored and I have had to go to the ICO. There are no doubt awful things written behind my back and to call Police on so many occasions which makes you wonder what is being reported against you.  Do they not even stop to think Police are busy and they are wasting Police time rather than try to make out they have cause to ask them to visit the ward.  This is being done to threaten and bully me and deter me from making contact whilst they continue to hold my daughter a prisoner indefinitely. It is not done out of concern or kindness for the vulnerable patient who is suffering. The reason is I do not trust anyone working for LINOLNSHIRE PARTNERSHIP TRUST is that they are using the point that it is no individual person’s responsibility and that all the professionals agree with their actions which most certainly go against their code of conducts.  My whole point is that the agencies assigned to protect seem to be doing nothing.

CQC have visited ward - then you get a letter and they do not want to get involved. The PHSO, LG Ombudsmen are other examples who dismiss a complaint they know full well they cannot defend. The defence is not towards you the public but towards the professionals.

The GMC, HCPC, GMC and NMC all protect the professionals.

Then there is the Professional Standards Agency who apparently have no powers to intervene. The Professionals Standards Agency are supposed to be responsible for overseeing all these agencies but I have just contacted them to hear they have no power under legislation to act. No wonder there is such unaccountability.

If there is no accountability what is the point of any codes of conduct or any of these agencies which cost the public a great deal of money yet fail to protect them/the vulnerable people. Iif nothing can be enforced to protect thousands of vulnerable people trapped in dreadful institutions and being abused all over this dreadful country then the Government surely needs to act. All the MP locally is contact the Trust. You will then get a standard letter and everything continues to go on and nothing is ever resolved so it is a waste of time. However our MP happens to be Health Secretary which is why I am turning to her not only for the sake of my daughter but so many others nationwide.

The most prominent people standing in the way of visits and contact appear to be DR WAQQAS KHOKHAR, the Responsible Clinician for Castle Ward and Emily Scott, Clinical Lead but then there are those at the very top namely Sarah Connery CEO, there is also the Management of the ward. Noone is taking the law into account and all hiding behind the MDT instead of being accountable individual or being made to review their actions according to their own code of conducts of which they are in breach. I am told not to contact the Carers Champion any more, all correspondence to be sent via the Care Concerns email address for which you do not get response when it comes to your questions as a whole.

From: Christopher Reid <Chris.Reid@parliament.uk>
Sent: 22 January 2024 14:55
To: susanb255
Subject: Re: Letter from Sarah Connery via Victoria Atkins MP (Case Ref: VA18567)

Dear Ms Bevis, 

Thank you for your response. 

As you are aware, we have previously raised your concerns about the wider issues with mental health and families with Victoria’s ministerial team, We are still waiting to hear back from them about this, however will of course let you know as soon as we do.

of course if you change your mind and want us to go back to the Trust on your daughter’s specific case them please do let us know.

Yours Sincerely,

Christopher Reid
Senior Caseworker
Office of the Rt Hon Victoria Atkins MP
Member of Parliament for Louth & Horncastle
Secretary of State for Health and Social Care

House of Commons                                       London SW1A 0AA   01507 527017

In line with data protection regulations, the Office of Victoria Atkins MP processes your personal data for casework and policy enquiry purposes. Please see our privacy notice at www.victoriaatkins.org.uk/privacy-notice.

________________________________________
From: susan bevis
Sent: 22 January 2024 12:38
To: REID, Chris <chris.reid@parliament.uk>
Subject: Re: Letter from Sarah Connery via Victoria Atkins MP (Case Ref: VA18567)

Dear Mr Reid

It is a waste of time going back to Trust Offices. I would like this whole issue of vulnerable people being sent far away from families out of area and kept a prisoner on MH wards for years and years dealt with in Parliament.  This is Victoria’s area and I know other cases and there needs to be more options.  Instead of bullying families and carers why not involve them in projects and set up something like Simon Trust.  There needs to be something done about the MHA and MCA as this is being abused.  There needs to be facility provision close to families and laws on accountability especially to Responsible clinicians who can lie as I can well and truly prove.  There needs to be restriction on length of time spent on acute wards.   When ms Connery speaks of 70 emails that is ridiculous.  In East Lindsay there is hardly anything in terms of facilities.  

I have not had anything in terms of satisfactory response.  The court system too is a disgrace.  Courts should be open and transparent.

I do not like to see human rights and other law being abused.

I would like to see more protection towards vulnerable people and their rights in hospitals and care homes and have been reading the paper just out on visiting rights etc.

All of this I would like to be addressed nationwide.

There needs to be accountability especial towards those at the top of Trusts and the Responsible Clinicians employed by a Trust.  For instance it is wrong for staff by way of instructions to act ultra vires, to use severance of the tiniest bit of leave to hospital shop, to take phone away, to use police to threaten to discourage family contact and worst of all day things like “I am having to ban you indefinitely ms bevis on the grounds *************************  stated dr Waqqas Khokhar on 28 December 2023.

Regards

Susan Bevis 

In all this time no Impact Assessment has been carried out. This is NHS Guidelines. Secondly the Government paper on visiting wards and care homes is completely forgotten by LPFT. They are rated good by the CQC and in all this time the CQC who describe themselves as a “business” have done nothing. The matter has also been referred to other agencies too responsibility for those employed by this Trust who say constantly “IT IS AN MDT DECISION” - No! it is not an MDT Decision if you read the details of their Code of Conduct. When I mention this they have no comment to say whatsoever and I am sure that many are just going along with instructions for the sake of their jobs.

I have nothing to hide which is why I am writing openly and honestly on here about the dreadful cruel and abusive NHS and how they treat the most vulnerable people in this country with no accountability whatsoever.   When I say “how would you feel if you were treated this way and had every phone call listened to and people dutifully writing notes that are not nice no doubt behind your back.” It is both undignified and degrading. Also this punishment is affecting others in the family too.

Eizabeth has spent years held like a prisoner on acute wards by LINCOLNSHIRE PARTNERSHIP TRUST who launched a campaign of bullying. When you phone it takes ages to get through on the phone sometimes. You then speak to a nurse or HCA and they cannot put you through to the phone that we as a family pay for. This has been going on for a very long time now. I think the contact through Vodafone is something like £13 a month but there is no usage because Elizabeth’s phone is locked away and they try to make out that there is a policy in place that is the same for other people but that is not true. I know this because friends on the ward were helping Elizabeth to contact me.

Last night I phoned the ward. After three attempts of not even being able to hear Elizabeth finally I got to speak to her on the ward phone. Her phone is left uncharged in the locker and they try to make out that she has access to it. All the time LINCOLNSHIRE PARTNERSHIP TRUST is discouraging and blocking calls to her mobile in the most disgusting manner. All the time they get away with it because the CQC and other agencies involved who I will feature later on do absolutely nothing. In an area where we have encountered nothing but bullying it is easy to see why staff are afraid to speak up.

Subject: Epilepsy & Psychosis

If Elizabeth has epilepsy she should not be treated with prn benzos for rapid tranquilisation. Prolonged and repeated use of benzodiaepines can increase the risk of rebound seizures or interictal epileptiform discharges (IEDs) in some individuals.

Schizophrenia-like symptoms are observed in some patients and are associated with epileptiform discharges but not overt seizures. The good response to antiepileptic treatment could be interpreted in the context of a (para)epileptic pathomechanism. 

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

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

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

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

See paper below.  It has some interesting comment on Clozapine you may like.  Reference 16 in the bibliography is to a paper that indicates that Clozapine can actually induce epilepsy in some patients due to a genetic polymorphism.  LPFT do not test for that either. 

Schizophrenia Associated with Epileptiform Discharges without Seizures Successfully Treated with Levetiracetam

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

• ¹Section for Experimental Neuropsychiatry, Department of Psychiatry, Faculty of Medicine, University of Freiburg, Freiburg, Germany
• ²Freiburg Epilepsy Center, Department of Neurosurgery, Faculty of Medicine, University of Freiburg, Freiburg, Germany
• ³Department of Rheumatology and Clinical Immunology, Faculty of Medicine, University of Freiburg, Freiburg, Germany

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

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

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

Background

Schizophrenia-like disorders are characterized by delusional perception and delusions of control, hallucinations (e.g., commenting or discussing voices), thought insertion or withdrawal, cognitive impairment, thought disorders, or social withdrawal.¹ In addition to primary, endogenic or idiopathic, polygenetic forms, different secondary pathophysiological mechanisms [e.g., (para)epileptic, immunological, degenerative] can be assumed. Because of the high rates of electroencephalography (EEG) alterations, ranging from 7 to 60% in patients with schizophreniform syndromes, epileptic and paraepileptic explanatory approaches have a long tradition (1–3). In line with this assumption, we reported the first case of a young patient with a schizophrenia-like disorder, generalized spike-and-slow-wave complexes without epileptic seizures but with remission under treatment with valproate (4, 5). Immunological reasons might be due to autoantibody-associated autoimmune encephalitis, cerebral vasculitis, or collagenosis [e.g., systemic lupus erythematosus (SLE)] (6). Immunological effects might lead to network instability and therefore cause (para)epileptic phenomena (7). The detection of a (para)epileptic or immunological mechanism opens new treatment perspectives, in that antiepileptics or immunomodulators may be helpful (4, 5, 7–10).

Case Presentation

Clinical Presentation

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

Family History

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

Somatic and Developmental History

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

Diagnostic Findings

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

Table 1

Figure 1. Frontal accentuated intermittent rhythmic delta activity (FIRDA, left) and generalized 3 Hz polyspike wave complexes (middle) in the bipolar longitudinal rows (7 µV/mm, 0.3 s, 70 Hz). The findings of the independent component analysis are presented in the right picture [the following four relevant components were found, left: activity traces, with examples of atypical activity cut from the clinical electroencephalography and appended at the dotted lines. Right: topographies, nose upward, negative (direction opposite of activity trace) blue, positive (direction same as activity trace) red. Right (component 3) and left (component 5) frontal activity show most prominent ~2.6 Hz bursts. Higher frequency activity frontocentral (component 2) and occipital (alpha component 7) are partially related].

Differential Diagnosis

The schizophreniform symptoms fulfilled the criteria of paranoid-hallucinatory schizophrenia (see footnote 1). Therefore, the most important differential diagnoses would be schizophrenia plus coincidental epileptiform discharges. Although the findings of the investigation led us to our consideration of neuropsychiatric SLE, the American College of Rheumatology classification criteria for SLE were not fulfilled.²

Therapy and Outcome

External neuroleptic treatment with risperidone (4 mg), amisulpride (600 mg), perazine (100 mg), aripiprazole (15 mg), and clozapine (275 mg) did not lead to long-term stabilization. Additional treatment with fluoxetine (20 mg) and citalopram (20 mg) for affective, negative, and cognitive symptoms did not successfully improve these symptoms. During the first visit in our clinic, in 2013, we detected the abovementioned epileptiform discharges. Assuming a (para)epileptic pathomechanism, we added antiepileptic treatment with valproate (1,500 mg) to the neuroleptic medication with clozapine and aripiprazole. At this point, the cognitive deficits improved significantly. Also, the EEG improved except for the (F)IRDAs. Another paranoid-hallucinatory episode in 2014 was treated successfully with a dose increase of clozapine and valproate. Because of a strong weight gain, the therapy with valproate was changed to topiramate (200 mg) in 2014. Assuming a (para)epileptic pathomechanism, clozapine was reduced and stopped in 2014. Aripiprazole was reduced in January 2014 and stopped in 2015. Normal results were found in both the routine EEG and in the EEG after sleep deprivation (2014). In the further course, topiramate led to a severe loss of appetite and was therefore changed to levetiracetam (1,500 mg) in 2014. The mental condition stabilized with the short-term antiepileptic treatment with topiramate and the subsequent antiepileptic treatment with levetiracetam (since 2014, and since 2015 as monotherapy). There were no more paranoid-hallucinatory episodes, the negative symptoms declined, the patient became a mother (in the spring of 2016); she lived alone, took care of her daughter, and simultaneously finished her vocational training (in the summer of 2016). She was able to suspend the mesalazine therapy and therefore only took levetiracetam (1,500 mg) at the time of stabilization.

Discussion

We present the case of a patient with a schizophrenia-like disorder and, following our judgment, a (para)epileptic pathomechanism, because of the distinct epileptiform discharges without seizures and remission under the anticonvulsive treatment with topiramate and subsequently levetiracetam monotherapy.

Reason and Potential Pathophysiology of Network Instability

The EEG alterations might be due to a polygenetic effect caused by different genes (12). The immunological mechanisms in the framework of ulcerative colitis and increased antinuclear antibody titers might have supported the network instability by mild inflammatory processes (7, 13–15). Medication might also disclose underlying polygenetic or immunological network instability (16). The local area network inhibition (LANI) hypothesis might explain the causal relationship between epileptiform EEG discharges and schizophrenia-like symptoms. Excitatory network activity, as represented by the 3 Hz polyspike wave complexes, might lead to consecutive inhibitory processes in a physiological attempt of the central nervous system to stabilize the excitatory–inhibitory equilibrium of local cerebral networks. The repetitive excitatory activity, as documented by consecutive EEGs in our patient, could have exceeded a critical threshold, leading to the successive hyperinhibition of cerebral networks. Following the LANI hypothesis, the symptoms are due to the secondary induced processes of hyperinhibition (e.g., temporal hyperinhibition might have led to auditory hallucinations or memory deficits) (2–5, 17).

Treatment Considerations

Following the LANI hypothesis, the cognitive improvement after the addition of valproate to the neuroleptic treatment would be explained by the reduced epileptic activity and therefore the subsequent amelioration of inhibitory processes. In line with this assumption, comprehensive long-term stabilization was not achieved by several attempts of neuroleptic medication alone in spite of clear and very convincing effects of the treatment with clozapine in particular on positive symptoms. However, such a comprehensive improvement and even full remission was achieved with topiramate and later levetiracetam monotherapy. Thus, clozapine with its well-known proconvulsive properties might well have counteracted inhibitory processes, while it is at the same time most likely unable to improve causative excitatory neuronal activity. By contrast, by reducing the epileptiform activity, topiramate and levitiracetam monotherapy might have resulted in a more causal and therefore more comprehensive improvement of relevant pathophysiology. Earlier, we published a case of a (para)epileptic schizophrenia-like disorder successfully treated with valproate (4). Valproate, and likewise lamotrigine, is already established as an augmentative treatment strategy in schizophrenia (18). One might hypothesize that patients with (para)epileptic pathomechanisms will benefit significantly more from antiepileptic treatment than other subgroups. To our knowledge, this is the first published case study that describes a patient with a schizophrenia-like disorder who was successfully treated with levetiracetam. Levetiracetam is rarely used off-label in psychiatry probably because of its potential side effects, such as agitation, aggression, fear, and psychosis (2). The advantage of levetiracetam is that it can be rapidly dosed up to effective concentrations. Therefore, on a single case basis, the working hypothesis of a (para)epileptic pathomechanism could be tested quickly. In comparison, valproate effects could be due to combined γ-aminobutyric acid (GABAergic) and antiglutamatergic effects, and lamotrigine effects might be due to potential antiglutamatergic effects. However, the mechanism of levetiracetam cannot be explained by such direct transmitter effects. The effects of levetiracetam seem to be associated with the binding of the synaptic vesicle glycoprotein 2A (SV2A) (2). SV2A can be found in presynaptic membranes; it controls the calcium-dependent exocytosis of different neurotransmitters into the synaptic gap (19, 20). Therefore, it might also influence GABAergic and glutamatergic transmission (21).

Limitations

Epileptiform discharges are found in less than 1% of healthy adults (1, 22–24) and as a rare consequence of clozapine treatment (16). Therefore, the EEG alterations could be interpreted either as an incidental finding in a patient with schizophrenia or as a clozapine side effect. However, the clinical course—with improvement under antiepileptic treatment in parallel with EEG normalization—speaks against the assumption. The pathophysiological processes might be explained by the LANI hypothesis; however, this is only an unproven, theoretical framework that needs further investigation.

Conclusion

This case report illustrates the idea of a possible (para)epileptic pathomechanism in a patient with a schizophrenia-like disorder. Regarding diagnostic procedure, our case shows the importance of EEG examinations in typical schizophrenia-like disorders. Regarding pathophysiology, the case illustrates a potential pathogenetic role of epileptiform discharges in a subgroup of patients with schizophrenia-like symptoms. Regarding treatment, the case demonstrates that anticonvulsive medication with levetiracetam and also topiramate or valproate could be a successful treatment alternative in schizophrenia with EEG alterations.

Ethics Statement

The patient has given her informed and written consent for this case report, including the presented images, to be published.

Author Contributions

LTvE treated the patient. DE wrote the paper and performed the data collection. DE and LTvE performed the interpretation of the diagnostic findings and therapy effects. BF performed and interpreted the EEG analysis. NV performed and interpreted the immunological analyses. EP and D-MA reviewed the diagnostic results and contributed to the manuscript preparation. All the authors were significantly involved in the theoretical discussion and the preparation of the manuscript, and they read and approved the final version of the manuscript.

Conflict of Interest Statement

DE, EP, and BF: none; D-MA: lecture fees from UCB Pharma; NV: advisory boards, lectures, research, or travel grants within the last 3 years: Janssen-Cilag, Roche, Novartis, AbbVie, GSK, and Medac. LTvE: lectures, work shops, or travel grants within the last 3 years: Eli Lilly, Medice, Shire, UCB, Servier, and Cyberonics.

Abbreviations

ACR, American College of Rheumatology; ANA, antinuclear antibody; CSF, cerebrospinal fluid; EEG, electroencephalography; FIRDA, frontal intermittent rhythmic delta activity; GABA, γ-aminobutyric acid; HV, hyperventilation; ICA, independent component analyses; IRDA; intermittent rhythmic delta activity; LANI, local area network inhibition; SLE, systemic lupus erythematosus; SV2A, synaptic vesicle glycoprotein 2A.

Footnotes

1. ^http://apps.who.int/classifications/icd10/browse/2010/en#/F20-F29.
2. ^www.rheumatology.org/Portals/0/Files/1997%20Update%20of%201982%20Revised.pdf.

References

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Keywords: epilepsy, schizophrenia, epileptiform discharges, levetiracetam, paraepileptic, LANI hypothesis

Citation: Endres D, Perlov E, Feige B, Altenmüller D-M, Venhoff N and Tebartz van Elst L (2017) Schizophrenia Associated with Epileptiform Discharges without Seizures Successfully Treated with Levetiracetam. Front. Psychiatry 8:12. doi: 10.3389/fpsyt.2017.00012

Received: 27 October 2016; Accepted: 17 January 2017;
Published: 08 February 2017

Edited by:

Karl Bechter, University of Ulm, Germany

Reviewed by:

Sabina Berretta, Harvard Medical School, USA
Mark Cunningham, Newcastle University, UK

PANSS

The PANSS has been studied for its psychometric properties, and the data shows adequate Internal consistency, good test-retest reliability, and inter-rater reliability. In addition the PANSS has been researched in quality of life studies, functional status, natural history of schizophrenia and treatment outcomes. It has most of its evidence base to support its use for grading the severity of schizophrenia symptoms, staging of schizophrenia and treatment progress with medications.

The scale has mostly been used to inventory, grade and follow the symptoms in schizophrenia. It quantifies positive symptoms, which refer to an excess or distortion of normal functions (e.g., hallucinations and delusions), and negative symptoms, which represent a diminution or loss of normal functions. The PANSS is composed of 3 subscales: Positive Scale, Negative Scale, and General Psychopathology Scale. Each subscale is rated with 1 to 7 points ranging from absent to extreme. The range for the Positive and Negative Scales is 7-49, and the range for the General Psychopathology Scale is 16-112. The total PANSS score is simply the sum of the sub scales. In addition to these measures, a Composite Scale is scored by subtracting the negative score from the positive score. This yields a bipolar index that ranges from –42 to +42, which is essentially a difference score reflecting the degree of predominance of one syndrome in relation to the other.

The Positive and Negative Syndrome Scale (PANSS) was published in 1987 by Stanley Kay, Lewis Opler, and Abraham Fiszbein. It’s a scale used for measuring symptom severity of schizophrenia, and widely used in the study of psychopharmacologic therapy. The scale was based off the Psychopathology Rating Schedule (PRS) and the Brief Psychiatric Rating Scale (BPRS). The PANSS is a 30-item clinician-administered rating scale, but requires 45 to 50 minutes to be administered by a subject matter expert. The interviewer must be trained to a standardized level of reliability. The PANSS has been published officially across 40 languages and is used internationally in mostly clinical research.

PANNS is also used to deny patients autonomy (capacity) It is used to judge the diminution of loss of function by rating it on a scale. If LPFT do not use this scale how have they determined that ****** lacks capacity? LPFT state she has severe symptoms but have not measured them. The severity or otherwise seems to be based on the opinions of staff, some of whom are not medically qualified, never mind ‘subject matter experts’.

This is why the PANSS score is important. I do not need to agree with the diagnostics of schizophrenia to see the importance. The fact is that ****** been diagnosed with paranoid schizophrenia but LPFT have not used this metric in the diagnosis or the treatment they give her. LPFT prefer and have stayed reliant on subjective observations by multiple staff on a daily basis which is hardly a scientific method and effectively is a trial and error, hit and miss approach. PANSS is a doctors responsibility, not a ward care assistant’s.

Note that medication decisions are based on PANSS and so I am curious to know what are LPFT using in that case?

This is very similar to the ignoring of the metabolism issues. Whilst known that she is a poor metaboliser, :LPFT make no provision for it. So, they take no notice of the diagnostic criteria or notice of metabolism problems yet still label ****** with this ‘diagnosis’ and medicate her according to it being correct?

It has come to my attention the following:

“****** regular mental health medication is a Clopixol (Zuclopenthixol Decanoate) 400mg depot. This is administered once every two weeks and has been authorised by a Second Opinion Appointed Doctor on 29th December 2023 as well as being supported by ******** Responsible Clinician.

-LPFT does not routinely use the Positive and Negative Syndrome Scale for Schizophrenia (PANSS). This was confirmed by the Responsible Clinician who has stated that ******** progress is currently being judged based on engagement with staff and activities.”

Finally I do not appear to have response to my previous email about visiting the ward on the 12 February and ****** phoned me today. Please explain about Sheffield. I was not clear whether this is another placement or what? ****** has shared with me she is thought to have epilepsy and that Dr S came to see her. Can you please advise how things went and the outcome? ****** said that it was needed a recording of the episode which she had another one the other day. It is not good that my daughter is injected after every episode. This is affecting her sleep pattern and it is affecting her blood oxygen levels. Rapid tranquilisations on a frequent basis are not good for my daughter’s physical health and may even be causing the problem of episodes rather than suggestions that I am contributory. I have not been allowed to see ****** for months so how can this be any way contributory to me? On the Advanced Declaration it clearly says that ****** does not wish to be subject to unnecessary treatments and rapid tranquilisations fit into that description. Please note that the rapid tranquilisations are not part of my daughter’s “treatment” and should therefore cease. I do not want to hear that everything has been agreed by the SOAD. In fact the SOAD needs to be aware of the above and so do the CQC.

I would suggest that LPFT contact Cygnet Durham where Dr M was witness to such episode as there may be a recording of that under Cygnet.

As someone who has attained qualifications re Best Interest I can now judge that nothing has been done correctly under LPFT, especially the capacity assessments along with the PANSS score.

From: susan bevis Sent: 07 February 2024 22:45

To: CARECONCERNS (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) <lpft.careconcerns@nhs.net>

Cc: Enquiries <Enquiries@cqc.org.uk>

Subject: PANSS SCORE – *********** – For the Attention of Sarah Connery, Kevin Lockyer and Emily Scott (Clinical Lead)

Mental Health Act Administration Office

Trust Headquarters

St Georges

Long Leys Road

Lincoln

LN1 1FS

25th January 2024

Dear Mrs Bevis,

A decision has been made by the multi-disciplinary team (MDT) in charge of Elizabeth’s care to suspend your visits to Elizabeth for a further 4 weeks.

This follows the initial decision to suspend your visits which was made on 28th November 2023 and will be reviewed again on Thursday 22nd February 2024.

The decision made by the MDT on 25th January 2024 was in response to ongoing clinical concerns regarding the impact of your visits on Elizabeth’s presentation, In addition to security concerns raised following the events of 25th December 2023 which are currently being investigated.

Kind Regards,

The Mental Health Act Team.

EMAIL FROM MARK MHA OFFICE COMPLAINTS CQC TEAM

Dear Ms Bevis

We are writing to you from the Mental Health Act complaints team at the Care Quality Commission (CQC).

We have now received a copy of the letter summarising the outcome of the investigation into your complaints. We believe that a copy of this letter dated 14 November 2023 and signed by Dr Toby Greenall the Consultant Psychiatrist at Peter Hodgkinson Centre has already been sent to you, but please let us know if this is not so.

The Mental Health Act grants the CQC a discretionary power to investigate complaints where they are about the use of the powers and duties in the Act. If you are not satisfied with the response provided to you by the service, you could request that the CQC consider reviewing your unresolved concerns.

We do sometimes receive complaints about matters that we are not able to investigate because they are not within these powers. The CQC complaints process cannot make any recommendation about matters that can only be decided by a court of law. For example, we cannot rule on whether a detention is lawful, nor would we be able to provide any clinical opinion re diagnosis.

Before we could decide if there is a role for us, we would need a clear statement from you outlining what you are unhappy with in the provider response, any outstanding issues and your desired outcome.

Alternatively, you can contact the Parliamentary and Health Service Ombudsman Office (PHSO) within the next twelve months, saying why you are not satisfied. Their address is: –

The Parliamentary and Health Service Ombudsman for England

Citygate

Mosley Street

Manchester

M2 3HQ

www.ombudsman.org.uk/making-complaint

Telephone: 0345 015 4033

The PHSO can consider whether to investigate complaints that the NHS (and NHS funded care) in England have failed to act properly or fairly or provided a poor service. If the Ombudsman feels that it is more appropriate for the CQC to consider the outstanding concerns, they may refer you to our organisation.

The PHSO is the final arbiter in any complaint matter and therefore the CQC cannot consider any request for investigation once the Ombudsman has either completed or declined an investigation into your complaints.

Could I please request that you use the above reference number on any correspondence in relation to this case. If we do not hear from you within 15 working days of the date of this letter, we will assume that you have received satisfactory answers to the issues you have raised through Local Resolution and your enquiry will be closed.

Yours sincerely

Mark

Mental Health Act Complaints Team

Email to Mark and to David Inspectors of the CQC

I have already responded to David in his most unsatisfactory response to me so I am now going to respond to Mark.

I do not wish to hear a lecture on what the CQC can and cannot do when I contacted you re Ash Villa the only people doing the safeguarding were the patients themselves. I do not wish to be signposted to the Ombudsman who have only ever conducted 1 report satisfactorily on the safeguarding going on behind my back for which Elizabeth kindly gave me the minutes.

There is plenty for your team to look into and I am not happy with your email below for the reason that it is now 2.5 years of restricted detention and that you should refer me to PHSO when I do not see anything being done about the current situation which is unlawful. Most of all when you get a complaint the first person you should go and see is the patient and their advocate.

The last letter re Dr Greenall was on medication and I know that is something you will say you cannot get involved in however you do have SOAD’s who have rubber stamped everything including massive dosage of drugs without reading the files properly or seeing my daughter. What about the private scans and Neurologist appointment that has been missed.  A SOAD only agrees with the drug regime for the convenience of psychiatrists who may be in favour of certain drugs they promote and drugs that despite being on S3 should have the patients consent. How convenient going down the route of no capacity and best interests. However now that I have done a course on this I have become very knowledgeable about how things should be done properly.  MDT in meetings that consist of around 30 people all agree with one another or else if they do not agree God help them as I have experienced bullying like never before.  These same doctors blatently ignore the law or else they are ignorant towards the law whilst management pretend they do not know it when I am sure they do know.  They act ultra vires including all the staff on that ward, all backing each other in what they blindly see as “best interest” and the come up with “best interest”.  Off the record they may have differing opinions and as one RMN said previously “it is more than my job is worth”.  Others might comment “it is evil to keep her from her mother on her Birthday” - here is another comment “I quite understand how your mother feels”.

Anyway getting back to your letter so an inspector cannot/will not look into medication but RT is not part of the treatment and comes under Art 3 -degrading treatment and how regularly this is being administered for instance should be of interest and whether correct blood oxygen levels are being monitored before/after RT as well as the forced blood tests which are not part of MHA treatment from what I understand.

Moving on, what your organisation should be looking at is the breaches in law and cruelty to people like my daughter with her phone taken away and although they say “the phone is there if she wants it” – what is being said otherwise is “she can only have her phone if she asks for it.  OR ”I will see if she WANTS to speak to you.  Sometimes it is necessary to phone the ward. Sometimes you need to ask questions even though you get varying answers. If something like a bank card for instance goes missing and Elizabeth has commented it has been missing a week but I have only just found out. This is of concern and family need to be informed. Without a phone, without any contact with the outside world Elizabeth is cut off from reality. It could be that the card is somewhere in her room. Today I visited the ward but I could not even go into the reception area. I just drove over an hour’s journey just to drop in some food. I was then told she could not have some of the food because of health and safety and storage. Staff (2 of them) came outside the building to pick up the food. They straight away said “there are new rules”. I said what are these new rules? mentioned above. I asked if I could bring a miniature fridge to the ward that has just been pat tested. I was told a firm no to that.  I just commented that this shows being on the ward is far too restrictive and today is takeaway day – the only thing Elizabeth has to look forward to and I am left wondering if the card has been taken away and put in the office or whether it has been stolen. I have mentioned this to other family members tonight and that they should find out as there have been conflicting answers. Some have said the card is in the office whilst others confirm it has gone missing which will leave me with no alternative but to report the missing card to the Police if I do not hear further.

I have asked the rest of the family to find out and to arrange for a takeaway for Elizabeth as otherwise she will be left out of the only day patients can look forward to ordering what they want unlike the rest of the week when they are under strict control.  I thought the MHA and MCA were all about the least restrictions but not under LPFT. I have seen other patients going out unescorted but Elizabeth is treated differently in breach of the Equality Act 2010 and so am I.

As regards ban I have heard six months mentioned. I wonder why that is??? No doubt all will be revealed and the truth always comes out in the end. I just do not understand why the NHS are not decent enough to speak the truth and as regards the records I have been refused my own data by LPFT and no doubt this is to protect themselves. Is it a six month ban? or else is it indefinite whilst they put her in a care home out of area like they are trying to do. Nothing has been done right. To invoke an ongoing ban should go before CoP. Only the CoP can decide on banning someone indefinitely.

In the unsigned letter from the MHA it says about ongoing investigations against me. I have requested that Dr Khokhar and whoever called the Police on Xmas Day be requested to do a s9 statement just as I have volunteered to do. I bet nothing is done about this but if I was in the Police I would be investigating why Police time has been wasted on several occasions and I am only too happy for an investigation to go into the very serious allegations made against me by Elizabeth’s RC.  Those at the top of the Trust are only too away and although they say they are taking my complaint seriously this is not the case otherwise something would have been done after all this time.

It is bullying when a team of so many say nasty things about you behind your back and I have featured similar things from Enfield. I thought I might as well get all the files from there also especially from social services.  Apparently you cannot have comments deleted – they remain in the files however you can correct them but this will be a huge task for me. However when it comes to paperwork I have a lot of patients and tolerance as I am keen to see things recorded accurately.

The comments can/have been really nasty and adverse in opinion backed by all their MDT colleagues to to make you look bad. This in turn builds up a profile that can be passed from one area to another.  I would like to see these comments though nothing will shock me. I have welcomed safeguarding to be done on me. In fact I would like to share the safeguarding previously carried out and it was very helpful when Elizabeth handed me the minutes of the safeguarding meetings in Enfield. I have everyone’s email addresses. The Police were there, the GP and about 9 coercing Elizabeth to tick boxes. Both Council and Trust were forced to apologise.  Since then I have been waiting for same in this area but it has not got further than a referral on the part of one or two nurses who have “concerns”.

This is what I would like the CQC or have wanted the CQC to look into thoroughly: No vulnerable person should be subject to this kind of treatment and the phone should not be taken away or any other possessions.

The CP11 RT log and seclusion

How many episodes and how may have led to A&E?

Records of blood oxygen level tests

Record of the accident in the seclusion room.

I would like the CQC to find out why an Impact Assessment has not been carried out in accordance with NHS Guidelines

If everyone or was it just the Clinical Lead unaware of the Neurologist appointment Elizabeth did not attend on 3 January?

How many times has Elizabeth missed meals.

How many times has she had prone restraint and administering of depot by male only staff

Why the Trust has not consulted the CoP about their indefinite as voiced by Dr Waqqas Khokhar

What they are trying to pin on me in terms of criminal allegations exactly? – I would like the Police to get those concerned to sign the s9 statements as there was serious allegations of conflicting nature.  There are contradictions between RC and MHA re banning me indefinitely and the Trust’s MHA Legal Team write to say this is not so. Who is telling the truth when the MHA legal team have sent yet another four week ban. Dr Khokhar said he did not like the word BAN. Well I cannot think of a better word than BAN.

What I would be reassured about was if the CQC could contact Elizabeth and go and see her if on the ward.

Professional Standards Authority: Healthcare Regulation

Professional Standards Authorityhttps://www.professionalstandards.org.uk › …

We protect the public by overseeing the regulation and registration of healthcare professionals · How we help to protect the public.

Consultation on the Professional Standards Authority’s good practice guidance documents in support of regulatory reform

What is this consultation about?

Context for our consultation

The Government is in the process of reforming the way that health and care professionals are regulated. It is planning to change the legislation for nine out of the 10 healthcare professional regulators we oversee, giving them a range of new powers and allowing them to operate in a very different way.

The changes the Government intends to roll out will give regulators greater freedom to decide how they operate, including introducing the flexibility to set and amend their own rules. There will also be changes to regulators’ powers and governance arrangements.

The changes will also create an entirely new process for handling fitness to practise (the process by which concerns about healthcare professionals are dealt with). Under the new system, more cases are expected to be dealt with on paper through a process called an ‘accepted outcome’ rather than going to a formal hearing.

We have produced two sets of guidance to help regulators use their new powers effectively:

1. Guidance on the use of Accepted Outcomes in Fitness to Practise
2. Guidance on Rulemaking

Guidance on accepted outcomes in fitness to practise

Our guidance on the use of Accepted Outcomes in Fitness to Practise identifies key factors for regulators to consider when developing their own guidance on the use of accepted outcomes. The guidance includes factors to consider when deciding whether a case is best resolved by an accepted outcome or a fitness to practise panel (the disposal route) as well as factors for regulators to consider to ensure the accepted outcomes process is fair and transparent, and to promote effective decision-making.

Guidance on rulemaking

Our guidance on Rulemaking aims to help regulators make effective use of their new rulemaking powers in a way which prioritises public protection. It includes some principles to guide what good rules should aim to do or be, and the rulemaking process.

We are seeking your feedback on both pieces of guidance through this one consultation. The consultation paper explains more about the structure and sets out clearly which questions relate to which guidance.

Read through the full consultation to find out more. It is available in English and Welsh.

Why are we consulting?

We support the reforms to healthcare professional regulation but have also identified certain risks that may arise from the new ways of working. Developing the guidance that we are now consulting on is one of the steps we are taking to help make the reforms a success mitigate any potential risks and realise the opportunities of the reforms.

It is also one of our core roles (under the National Health Service Reform and Health Care Professions Act 2002 to promote best practice in the performance of regulators’ functions, to formulate principles relating to good professional regulation, and to encourage regulators to conform to them). We want to make sure that reformed regulation is as effective as possible at protecting the public.

We are therefore seeking views from everybody with an interest in healthcare professional regulation, including patients, the public, registrants, regulators, professional bodies and employers.

How can I respond?

Please respond to this consultation paper by completing the online survey available in English here or in Welsh here. When using the online survey don’t forget to save your answers as prompted. 

You can also submit your response by email – please include the name of the consultation in the subject line. When submitting by email, please reference your responses using the question numbers. Email responses should be sent to: policy@professionalstandards.org.uk

We welcome responses to any or all of the questions in the consultation.

Please respond by 5pm on Monday 15 April 2024.

---

This looks interesting – if the public are not being protected by the likes of CQC, PHSO, GMC and others it is good that there is such consultation and I am more than happy to take part.

The Care Quality Commission (CQC) is the independent regulator for the quality and safety of care in England (with Scotland and Wales regulating the same under their own independent Care Inspectorates), responsible for regulating providers of healthcare services, social care services and services for those whose rights are restricted under the Mental Health Act 1983. These powers extend to oversight of the NHS, local authorities, independent providers and certain voluntary organisations. The CQC registers and carries out inspections of care services and issues public information in relation to them. Under the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 the CQC also holds a range of enforcement powers, including penalties and prosecution, where it finds that fundamental care standards have been breached.

Here are two responses I have received:

The latest one just received from Mark.

Dear Ms Bevis

We are writing to you from the Mental Health Act complaints team at the Care Quality Commission (CQC).

We have now received a copy of the letter summarising the outcome of the investigation into your complaints. We believe that a copy of this letter dated 14 November 2023 and signed by Dr Toby Greenall the Consultant Psychiatrist at Peter Hodgkinson Centre has already been sent to you, but please let us know if this is not so.

The Mental Health Act grants the CQC a discretionary power to investigate complaints where they are about the use of the powers and duties in the Act. If you are not satisfied with the response provided to you by the service, you could request that the CQC consider reviewing your unresolved concerns.

We do sometimes receive complaints about matters that we are not able to investigate because they are not within these powers. The CQC complaints process cannot make any recommendation about matters that can only be decided by a court of law. For example, we cannot rule on whether a detention is lawful, nor would we be able to provide any clinical opinion re diagnosis.

Before we could decide if there is a role for us, we would need a clear statement from you outlining what you are unhappy with in the provider response, any outstanding issues and your desired outcome.

Alternatively, you can contact the Parliamentary and Health Service Ombudsman Office (PHSO) within the next twelve months, saying why you are not satisfied. Their address is: –

The Parliamentary and Health Service Ombudsman for England

Citygate

Mosley Street

Manchester

M2 3HQ

www.ombudsman.org.uk/making-complaint

Telephone: 0345 015 4033

The PHSO can consider whether to investigate complaints that the NHS (and NHS funded care) in England have failed to act properly or fairly or provided a poor service. If the Ombudsman feels that it is more appropriate for the CQC to consider the outstanding concerns, they may refer you to our organisation.

The PHSO is the final arbiter in any complaint matter and therefore the CQC cannot consider any request for investigation once the Ombudsman has either completed or declined an investigation into your complaints.

Could I please request that you use the above reference number on any correspondence in relation to this case. If we do not hear from you within 15 working days of the date of this letter, we will assume that you have received satisfactory answers to the issues you have raised through Local Resolution and your enquiry will be closed.

Yours sincerely

Mark

Mental Health Act Complaints Team

Here is another response received from:

I cannot think of a greater abuse than to take away the phone from a vulnerable patient, already cut off from the outside world and reality such as my daughter. She is on an ongoing section renewed only recently without any family being present.  Abuse is taking place like this all over the Country under the NHS but in Lincolnshire it is particularly bad. The very worst treatment of all has been under NHS not as you would expect from private sector which is mainly documented fully but when such abuse goes on under the NHS they are totally unaccountable. There is no external intervention and CQC have even supported them during the time at Ash Villa judging from the email I received at the time calling the CQC a business. All I know from Elizabeth is that CQC were on the ward and referred as safeguarding matter to Adults Safeguarding but no-one is giving thorough information as I was kicked out of my role as Nearest Relative and displaced last year so that Lincolnshire Partnership Trust supported by Lincolnshire County Council could abuse power and process and they most certainly have done by way of their legal department and went down the capacity route with three completely flawed capacity assessments. Now I have done the course myself I can see just how wrong this is and am shocked that such abuse of power can go on so that professionals such as social workers, doctors and legal professionals representing them can just be totally and utterly unaccountable. Once someone is deemed to have no capacity that is when they can abuse that vulnerable person, taking away their autonomy and choices and the course I have done is quite fascinating and highlights everything being done wrongly under LPFT and of course other Trusts who use this to cut out family and take control of that person’s life without any regard for their human rights or that of their family.  

The Responsible Clinician of this ward is called DR WAQQAS KHOKHAR who revealed he is “protecting his patient” and has “concerns” against my “impact” and “bad influence” on my daughter. Nothing like this appears under s11.15 of MHA Code of Conduct Justification for banning visits. He has no respect for the law and neither does anyone under Lincolnshire Partnership Trust. I am supposed to be invited to ward rounds and am giving 10 minutes to say what I want but last week was cut out completely and this has not been the first time. I have been allocated one email address but do not get satisfactory responses and some of my questions are right here such as when is a decision legal or medical?

The MHA Legal Team are behind the issuing of one banning letter after another trying to say this is an MDT Decision relying on one another for backup when things go wrong. This is a big disgrace and some measures need to be put in place to ensure responsibility. The one and only person responsible is DR WAQQAS KHOKHAR who is instructing everyone else to act ultra vires against their own code of conduct and often Healthcare Assistants are the ones that have to sit in during supervised calls and visits or staff from other wards, although visits have stopped altogether. 

Those who have the overall control are none other than those at the very top IE SARAH CONNERY AND KEVIN LOCKYER (CHAIR)

I have just received another letter from Sarah Connery via my MP who happens to be Victoria Atkins Health Secretary. Every time I get a response it is not addressing my concerns whatsoever so I have said it is pointless sending any more emails because it is a waste of time. Instead I stated that I would like Victoria Atkins to do something about a huge national problem where thousands of vulnerable people are locked up and abused under totally unsuitable settings such as acute wards and even high secure hospitals although my daughter’s treatment is befitting for the very worst places and even they offer better entitlements and regard to human rights. I have written several times but never 70 as suggested. I have had to apply for file records through the ICO as I feel that are staff are being instructed to write adversely behind my back. I am entitled to see what is written.

On Xmas Day we had just 1 hour visiting cut short to 45 minutes with staff listening in and during the second member of staff supervising in the small visiting room Elizabeth became upset and shouted at her. She spent 6 hrs in seclusion on Xmas Day so she told me.  I am quite frankly now very concerned about her wellbeing. It is not conducive for recovery to prevent a vulnerable person seeing their mother or having family contact/any leave, fresh air and exercise even if a certain responsible clinician does not approve and has a personal dislike towards me. He has handled everything in the most unprofessional manner and has said to Elizabeth he is going nowhere and is a very good doctor. He is in fact acting ultra vires but did not know the meaning of this and is totally disregarding of human rights. Xmas restrictions were undignified and degrading (Art 3). Staff called Police and Dr Khokhar has said he was indefinitely banning me from visiting my daughter due to ongoing police investigations. How very threatening of Dr Khokhar to say this but this is not true as I telephoned Police myself.  Dr Khokhar also said that I incited my daughter to attack members of staff and I have all of this RECORDED just like they are making false records only mine is such that noone can contest or twist the content of. This is totally untrue so you can imagine what their file records look like.  Dr Khokhar has been extremely untruthful. The other doctor who in the background now promoted to a Director is DR TOBY GREENALL from Ash Villa has said Elizabeth is ‘only partially treated.’ and kept going on about Clozapine, a drug she previously had bad reaction to.

Below is some interesting consideration, especially when both doctors have ignored physical health which should come well and truly BEFORE MH and they have denied all the pathological tests. Shame on the NHS/LPFT for allowing this to happen especially when there are concerns and abnormalities found on scans more than once.  Dr Khokhar is even saying that I am partially responsible for the ‘episodes’ that are happening that last hours and hours on end and sometimes end up in A&E. For the most part I have not been present and these episodes of extreme distress where she is completely inconsolable, shaking all over with tremors and screaming is being looked upon as MH rather than Neurological yet she is supposed to now be under Dr C Solinas. I feel the psychiatrists are denying these appointments for physical health and do not want them to reveal anything so that their goal of treating her with Clozapine already tried and nearly threatened her life is once again considered and she has been FORCED according to Elizabeth to have a blood test. This is the real reason why I think these two Doctors want me out of the way.  MY DAUGHTER JIS BEING ABUSED WHILST THE LIKES OF SARAH CONNERY AND KEVIN LOCKYER, SHARON HARVEY AND MARTIN FAHY do nothing! They say it is a clinical decision however there is more than one thing to consider here. A blood test is optional and should not be forced by the likes of a nurse called Grace. There is an Advanced Declaration which her advocates know all about. There are so may people now involved and all appear to be doing NOTHING. There is no communication so what else can I think.

Why is a drug banned by the UK being given to vulnerable people anyway?  and is available in some areas? Perhaps Victoria Atkins can answer this question WHY IS CLOZAPINE LIQUID INJECTIONS GIVEN WHEN IT IS BANNED BY THE UK IN SOME AREAS?

The former deputy Manager KS of Ash Villa sent Elizabeth away and had provoked her and called police. She then said to my younger daughter appointed Nearest Relative in my place that it was best I did not see Elizabeth for six months. She was then sent to Cygnet Durham where I had no contact hardly.

Six months they want me out of the way no doubt so I cannot see how ill my daughter becomes whilst they experiment to their hearts content on a drug she nearly died on. If anything happens to my daughter I want everyone to know the names of these two doctors who have stood in the way of her physical health appointments and have not read the files properly DR WAQQAS KHOKHAR AND DR TOBY GREENALL and those who hold the ultimate responsibility for power and have failed to provided the necessary pathological tests and refused the MRi originally. These doctors have ignored physical healthcare. She has what looks like a cavernoma and lesions and one previous doctor employed by LPFT Dr H Shahpasandy stood in the way of his own research into the Limbic System.  

Throughout 2.5 years she has been held like a restricted prisoner under this LINCOLNSHIRE - wish we had never moved – all that was ever needed was compassionate care but the NHS is devoid of compassion and kindness under the MH. This is a profession where staff forget their Code of Conduct and what they went into the profession for in the first place. There is definitely no accountability here whatsoever.

There is a reason why they want me out of the way and they are using bullying tactics to prevent me from having contact with my daughter for a reason and that reason is NOT because I am abusive. The Police on every occasion were called out, their time wasted whilst various staff had obviously said adverse things and on the most recent occasion at Xmas it was due to “concern” or should I say “instructions” and that was because I had insisted on wanting to know about what they were doing with the medication. I did as they said – left the ward and waiting downstairs whilst they carted Elizabeth off to the seclusion room for yet another injection. They are also not monitoring her blood oxygen levels which can be life threatening. Elizabeth has said they are not taking vital signs before/after administering rapid tranquilisation. They held her in seclusion for 6 hrs on Xmas Day according to Elizabeth. They injected her when they allowed her out. I hardly saw my daughter on Xmas Day. It was heartbreaking.  It was the worse Xmas I have ever had. 

The NHS as a whole is an absolute disgrace to ignore so many patients who are said to have MH problems when in fact they have Neurological or some other physical health condition. The NHS stand in the way of physical health checks when someone has a MH label and simply do not wish to look into matters further as this of course would reveal what is really the matter and underlying cause. Before even prescribing the NHS should provide all patients with a P450 liver enzyme test and check for problems with drug metabolism before prescribing. I have been told LPFT are in the dark ages when it comes to prescribing and can see truth in that and negligence if a pharmacist ignores what you tell them and I have met this pharmacist myself and explained.

There is no thought either to Elizabeth’s religious needs.  I do not know how anyone can just go along with this kind of abuse in the profession. If I was a nurse or doctor or healthcare assistant I would have to say something and report it but this is an area rife with bullying.  If this is what they are doing to me then just imaging what these people will do to anyone who dares to rock the boat. 

From: susan bevis

Sent: Wednesday, August 23, 2023 11:44 am

To: CONNERY, Sarah (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) sarah.connery@nhs.net; PATIENTEXPERIENCE (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) lpft.patientexperience@nhs.net; Subject: Clozapine and sending Elizabeth back to London

Dear Ms Connery, Ms Harvey and Mr Fahey

Please can you explain as per the email below.  My daughter nearly died on the titration of Clozapine and I have the entire files.   At the specialist hospital (ROYAL BETHLEM) I was very concerned my daughter was put on 2 x BNF levels of drugs including max level of Olanzapine.   They did not have a single ECG machine working there and she was critical.  I have all the files to prove it.  It was when they made her lose capacity that she was put on Clozapine, a drug she nearly died on and one that did not benefit her at all.

She is of high risk of mortality and of high risk of choking.   She could barely walk on this drug.   Once capacity lost they prescribed Clozapine. Her face was covered in bruises through restraint. Elizabeth does not want to go back to this dreadful place and now I would like an explanation for the real reason why sending her back to London is necessary?

From: xxxxxx

Sent: 22 August 2023 10:00

To: susan bevis susanb255@outlook.com

Subject: Re: Court of Protection

“I fail to see why Elizabeth would need to be set to London to be given Clozapine unless the local Clozapine clinic has refused to allow this.  

The drug needs very careful monitoring because of the risk of agranulocytosis and it may be that they will not allow it without her consent.  If there is a clinical rationale for moving to Clozapine it should be explained in full.

This looks suspicious to me.  

I think a full explanation is needed.  

High doses of neuroleptic medication will reduce capacity as they affect both motor and cognitive function.  Patients should not be given more than the minimum effective dose and no patient should be on protracted periods of maximum dosing, that is a clear indicator of metabolic dysfunction and a failure of the duty of care. 

Clozapine is not approved for intramuscular depot injection in the UK but some trusts are using it nonetheless.  

I do not know if LPFT is one of them or whether they are thinking about sending her to London because they are using it.  

It is crazy to use a drug with agranulocytosis as an ADR since the drug needs to be immediately stopped if the blood test shows a fall in white blood cells.  Immediate cessation is self-evidently not possible with a depot.  I am shocked that some trusts are doing this at all.

Clozapine injection can only be prescribed if approved by MDT, SOAD, Clinical Director and DTC. It can only be prescribed by a Consultant.   THE CLINICAL DIRECTOR IS DR TOBY GREENALL.

Some Trusts have approved its use, in exceptional circumstances during the two weeks at the initiation stage if the patient refuses the oral administration by tablet.  

Here is the set of rules that apply (somewhat bizarrely since the drug is not approved for use)

IM Clozapine Depo: Key Points 

Clozapine injection is not licensed for use in the UK. 

Some trusts have approved its use, in exceptional circumstances, for service users that are inpatients. 

Clozapine injection should only be used as a last resort and is limited to two weeks at the initiation stage. 

Clozapine injection can only be obtained by following these guidelines. 

Clozapine injection can only be prescribed if approved by a Second Opinion Appointed Doctor (SOAD). 

It can only be prescribed by a Consultant and use of the product must be approved by the Clinical Director on an individual basis. 

The oral bioavailability of clozapine is about half that of the intramuscular injection.

Clozapineinjection is expensive. Dose titration over 2 weeks costs £2000. 

2. What is IM Clozapine? 

Intramuscular clozapine is an unlicensed product made in the Netherlands by Brocacef and imported to the UK via Durbin PLC. 

It is a clear yellow solution for injection. 

The strength of the injection is 25mg/ml and each ampoule contains 5mls (125mg). 

It is administered by deep intramuscular injection into the gluteal muscle. 

The injection is painful and the maximum volume that can be injected into each site is 4ml (100mg). 

For doses greater than 100mg daily, the dose may be divided and administered into two sites. 

The clozapine titration should follow once daily doses as per Appendix 1. 

Injection sites should be rotated as per usual IM practice. See Trust Injection Procedure policy 

Click to access Injection%20Procedure.pdf

3. Which service users can be prescribed IM Clozapine? 

IM Clozapine is indicated ONLY for inpatients with a treatment-refractory psychotic disorder that are refusing oral treatment. 

IM Clozapine may need to be administered under restraint if the service user declines IM administration. To be administered in line with the Trust’s RESPECT training.  An all male team of “nurses” pin her down and someone called Matthew shouts “shall we get her on the bed”  Someone called Grace forces her to have blood tests. This is nothing but torture by LPFT who refuse to look into her underlying physical health conditions and I have had private scans done. They could not care less.

It can be prescribed for service users who have never previously received clozapine or for service users who have previously been treated with clozapine and are known to have responded to it but who have subsequently relapsed owing to non-adherence.  Elizabeth nearly died on it.

The initial need for clozapine injection MUST be: 

Agreed by the multidisciplinary team (MDT)  A GROUP OF PEOPLE WHO ARE TOTALLY UNACCOUNTABLE AND IN BREACH OF EVERY HUMAN RIGHTS LAW.
Approved by the Clinical Director (CD) and SOAD  How can a CQC SOAD approve an injection banned in this country?????

Clozapine injection must specifically referenced by the SOAD on the T3 form as a named drug, stating the route of administration and dosing information. 

These recommendations, from three independent parties (MDT, CD and SOAD) MUST be fully documented on the IM Clozapine MDT Assessment Form (Appendix 2) and must be signed by the Consultant and recorded in the service user’s electronic notes. 

The completed MDT Assessment Form (along with T3 form) must be emailed to the Chair of the Drugs and Therapeutics Committee (DTC) and to the Chief Pharmacist together with the completed “Request and Risk Assessment for the use of Unlicensed Medicines” form found in the Medicines Policy –  The Pharmacist is truly aware of inflammation of the brain and underlying physical health conditions. The pharmacist will also be responsible if anything happens to my daughter on Clozapine which is why I assume I am being prevented from contact altogether and from what I gather her name is Charlotte Bellamy. Noone has looked into past reactions to this drug and I have all the files for the Bethlem.

http://trustspace/InformationCentre/TrustPolicies/Pages/Medicines.asp

These two forms will form the basis upon which the DTC Chair and Chief Pharmacist (CHARLOTTE BELLAMY) will formulate their decision to either grant their approval for use of IM Clozapine for a particular service user, or to refuse such approval. 

IM Clozapine may only be prescribed and administered following the written approval of the DTC Chair. 

IM Clozapine injection MUST be requested on an individual service user basis only.

I had reported this drug due to adverse reaction.

Good morning Susan

Thank you for your enquiry concerning Clozaril (Clozapine) Tabs.

Viatris are unable to make any specific treatment recommendation to individual patients or carers.  We would advise patients to contact their healthcare provider for further guidance.

As you have mentioned an adverse reaction to a pharmaceutical product, please can I pass your details onto the appropriate Viatris department, who may wish to contact you for further details?

If you have a medical enquiry, please contact our Medical Information department on 01707 853 000 Opt. 1

Kind regards,

Karen Blackwell

Customer Relations Executive

Customer Service

Viatris

Building 4, Trident Place, Mosquito Way

Hatfield, Herts

AL10 9UL

productenquiries@viatris.com

Telephone: 44.0.1707.853100
Fax: 44.0.1707.261803

Viatris.com

  Hospital Orders – hospitalorders@viatris.com
  Wholesale Orders – UKorders@viatris.com
  Fax – 01707 261803 (please note this is a shared business fax so email is likely to reach us quicker)
 

Our Customer Services direct phone number is 01707 853100 and our Customer Services direct email is UKcustomer.services@viatris.com

When is a healthcare professional’s act non-medical, and how might such non-medical acts be classified?

One approach, analogous to the substantive due process inquiry employed by  courts weighing the constitutionality of legislative acts, would involve consideration of the following questions: 

1) Is a legitimate medical goal being pursued?  Dr Waqqas Khokhar and staff have allowed Elizabeth to go without her Neurologist appointment. This was on the 3 January 2024 with a Dr C Solinas. I turned up to the appointment. Elizabeth was nowhere to be seen. I handed Dr C Solinas the disk with all the scans on I had done privately. It is sheer neglect of any doctor, in this case a psychiatrist to ignore underlying causes that were shown on the private scans and to deny her with an appointment to see a physical health expert in the field of Neurology and to cancel all previous appointments as unnecessary. Dr Greenall who praises Clozapine yet who has never tried it himself has stated that she is only ‘partially treated’ and he is another doctor who could not care less because all her Neurologist appointments previously arranged by Enfield were cancelled as “unnecessary” and he knew about these.  Elizabeth previously nearly died on Clozapine previously. The liquid injection form banned in the UK is still given at certain hospitals like the ROYAL BETHLEM. This is where she was previously put on this drug and nearly died. I’ve got all the files. 

 2) Are the means being employed legitimately medical?   It is not medical to deprive contact with family and to restrict leave and keep a vulnerable patient a virtual prisoner.

 3) Are the goals and means appropriately related? Accordingly, a healthcare professional acts medically when employing legitimate and appropriate medical means in pursuit of a legitimate medical goal.  My daughter is being injected on virtually a daily basis and this is degrading treatment.

In contrast, when the goals pursued or means employed are not legitimately medical, or when the two are not appropriately related, the act is medically ultra vires (“beyond the powers”)–that is, an act beyond the professional’s power or authority–and consequently non-medical. 

 If an act designed to achieve an end such as restricting visits had a purpose of simply punishing the visitor, to the detriment of the patient then it would have no legitimate medical purpose.  Yes punishment to deny ground leave to the hospital shop as well as any kind of leave.

Denying a patient activities that are beneficial to them in order to apply some form of sanction is a matter ultra vires.  This was the failing of the ‘token economy’ system used in psychiatric hospitals where patients were coerced into behaving in a particular way for favours. Not only is this a flagrant breach of the principlist ethics of beneficence & autonomy & possible non-maleficence but it represents a violation in many cases of the patients human rights. Denial of all psychology and stuck in an untherapeutic enviroment for years and years on end like a prisoner. This is care under LPFT rated Good!!!!!

 Section 17 leave and visits from friends and relatives are rights not favours. 

Medicating patient with prn medication for the purpose of keeping them quiescent is arguably a non-medical intervention and is often used to give staff a quiet time rather than to benefit the patient.  The usual reason given is that the patient was distressed.  There are many ways a distressed person can he supported without prn injections.  Giving drugs in the is way is both ultra vires and ultra fines. But since nothing has worked they are now looking to experiment further without any regard to risks or looking for underlying pathological physical health reasons. THIS IS NHS CARE AT ITS VERY WORST.

 Medically ultra vires acts may be further sub-classified depending upon which prong of the above trident is defective. Where the goal of the act, though achievable, is not legitimately medical, the act is medically ultra vires because of goal illegitimacy, or medically ultra fines (“beyond the ends”). To deprive leave is ABUSE. to take away the phone is to protect themselves and stop Elizabeth from sharing information.

Where the means employed are not legitimately medical, the act is medically ultra vires because of means illegitimacy, or medically ultra modos (“beyond the means”). Where the means and goals are not appropriately related, the act is medically ultra vires because of means-goals disjunction, or medically ultra nexus (“beyond the connection”). 

Medical futility (where the medical goal in question, albeit legitimate, cannot be achieved by the act under consideration) represents the paradigmatic example of the latter.

NURSING AND MIDWIFERY CODE OF CONDUCT

I attach some of the Code of Conduct from the Nursing Midwifery Council and would comment on one or two points here:

1 Treat people as individuals and uphold their dignity To achieve this, you must:

1.1 treat people with kindness, respect and compassion  There is no kindness or compassion.

1.5 respect and uphold people’s human rights No human rights

3.4 act as an advocate for the vulnerable, challenging poor practice and discriminatory attitudes and behaviour relating to their care  Total Discrimination under Equality Act

4.4 tell colleagues, your manager and the person receiving care if you have a conscientious objection to a particular procedure and arrange for a suitably qualified colleague to take over responsibility for that person’s care Rife with bullying so each and every employee going along with their instructions.

17.1 take all reasonable steps to protect people who are vulnerable or at risk from harm, neglect or abuse Not one of them protecting

20.2 act with honesty and integrity at all times, treating people fairly and without discrimination, bullying or harassment  Total dishonesty in the case of LPFT with a doctor who uses threatening and bullying techniques and even dishonesty about Police investigations being ongoing. We decided to do a Section 9 Statement even though Police did not wish to take matters further.

So here is what nursing staff have done instead:

Tell Elizabeth  she can no longer go out to the shops any more as a punishment for being hostile.

Stand in front of the ward door (2 nurses) barring my visit whilst my daughter was on the other side of the door and could see our arrival.  Then say “it is an executive decision“.   I was then told to move away from the door and that I was upsetting my daughter by 1 nurse.  We had no warning of the ban and had agreed the visit beforehand.   The food I brought was a healthy meal to make up for being informed all S17 leave was banned without any notice.   I was told no food was allowed onto the ward because they did not know where it came from.   Please see below law on bringing food/ordering food from outside. Snatch food and water away whilst eating/drinking. Allow her to sleep on a faulty bed. Leave needle covers lying on table next to bed not caring whether she chokes on them, brutal prone restraint by several men.

This is the worst area we have ever encountered in all these years and yet they are rated Good. There are serious safety issues here as well and if vulnerable patients lives are put at risk then the CQC needs to act fast. All the CQC have done is refer to Adults Safeguarding and look what Adults Safeguarding did last time at Ash Villa NOTHING.  Safeguarding was instead pointed at me but I found out what was going on and then I sent all the S42 minutes from former area and my apology letter from Trust and Council. I have thought that a Section 42 meeting would have been good to have if certain professionals had any doubts about me and because I have nothing to hide I suggested a Section 42 meeting and nothing was done.

As for the promised CTR from Martin Fahey that was not done properly at all as Elizabeth said “two ladies came up to her”. She did not know who they were who they were. She was then told she had to stay on the ward. What kind of CTR is that. One HCA even wrote on her wrist “wish not allowed”.

This is Elizabeth’s wish: Friday 10th November

“My idea”

I want to eventually come home to live with my mum in the annex through the Court of Protection. I miss my |Mum greatly and want to go home to her”

Now I will it to my readers to come to their own conclusions. Elizabeth has a separate living accommodation in the back garden and misses her cat. She wants to be at home. I have been in touch so many times with Victoria Atkins, MP now Health Secretary and she has passed letters on and I have got nowhere and this has left me with only one option.

Code of Conduct from Nursing Midwifery Council examples:

1 Treat people as individuals and uphold their dignity To achieve this, you must:

1.1 treat people with kindness, respect and compassion

1.5 respect and uphold people’s human rights

3.4 act as an advocate for the vulnerable, challenging poor practice and discriminatory attitudes and behaviour relating to their care

4.4 tell colleagues, your manager and the person receiving care if you have a conscientious objection to a particular procedure and arrange for a suitably qualified colleague to take over responsibility for that person’s care

17.1 take all reasonable steps to protect people who are vulnerable or at risk from harm, neglect or abuse

20.2 act with honesty and integrity at all times, treating people fairly and without discrimination, bullying or harassment

Two nurses were acting on orders from a superior but were in fact acting ultra vires.  Neither had challenged whether their actions were lawful or abided by their own code of conduct.  If someone is requested to do a duty such as turn away visitors they should have reported concerns.  This is clearly over and above their duty and detrimental to my daughter’s wellbeing.   Each and every medical practitioner has a duty to abide by the NMC Code of Conduct first and should know about human rights law, MHA law, MCA Law and NHS Guidelines.     My daughter was looking forward to our visit.  She was excited about seeing us, reflected in her text messages.  We had pre booked this visit.   How do you think my vulnerable daughter felt the other side of the glass door being refused her visitors when other visitors were being allowed onto the ward?    Why then was there not an alternative as to where we could see my daughter if I was not allowed to visit her on the ward? 

To advise Elizabeth she could not order food when she was starving hungry (having missed all her meals) as it was too late in the evening is also extremely wrong.  Nursing staff should know this is wrong and unlawful too (see below).  Elizabeth was denied even to even walk escorted to the shop/restaurant as punishment for being hostile by a nurse acting on instructions (ultra vires). She was not even allowed to order shopping by another nurse acting ultra vires.  She is held under the MHA which should be the least restrictive care and there is case law on ordering food from outside of hospital which has also been refused to Elizabeth by two further nurses acting ultra vires who first notified myself of the ban on visiting. 

Use of conditions in deprivation of liberty safeguard authorisations

06 April 2023

Richard Griffith

The deprivation of liberty safeguards were introduced into the Mental Capacity Act 2005 schedule A1 following the decision of the European Court of Human Rights in HL v United Kingdom (45508/99) (2005). The safeguards can be used to authorise the deprivation of liberty of an adult in a care home or hospital where this is necessary to protect the person from harm and is proportionate to the risk and seriousness of that harm, as set out in the Mental Capacity Act 2005, schedule A1 paragraph 16.

Protecting dignity and autonomy

To protect the dignity of patients by ensuring that restrictions imposed to protect that person and not overly intrusive, best interests assessors are commissioned to review the restrictions and satisfy themselves that the protective measures in place are necessary and proportionate. Restrictions that disproportionately interfere with the autonomy of the person will be unlawful. In Re MK[2014] the Court of Protection held that the removal of a woman with severe learning disabilities from her family was a deprivation of liberty that was disproportionate and unnecessary. The woman was not at risk, her wishes and feeling were to be at home with her family and the standard of her day-to-day care had been good. The woman had been unlawfully deprived of her liberty and unlawfully denied contact with her family. Both were unjustifiable interferences with her human rights under article 5 and 8 of the European Convention on Human Rights (ECHR) (Council of Europe, 1950).

Using conditions to ensure necessary and proportionate restrictions

Local authorities and health boards, in their role as supervisory bodies, are tasked with sanctioning a deprivation of liberty standard authorisation under the safeguards (Mental Capacity Act 2005, schedule A1 paragraph 50). To ensure that hospitals only impose proportionate restriction that are necessary to protect the person from harm, the supervisory body can make the authorisation subject to conditions that are legally binding on the hospital. The supervisory body will consider the recommendations of the best interests assessor when deciding if an authorisation should be subject to conditions (Mental Capacity Act 2005, schedule A1 paragraph 53).

In Re G [2016] the court considered the case of a woman, aged 92, who had dementia and lacked capacity. Her care plan involved the administration of medication covertly. No conditions had been placed on the authorisation of her deprivation of liberty. The court found that the use of covert medication had not been subject to proper safeguards; the decision to administer medication covertly did not appear to have been communicated to the supervisory body. The court issued guidance that best interests assessors and supervisory bodies should place conditions on the authorisation to ensure that covert administration was regularly kept under review and that it continued to be a necessary and proportionate response to the needs of the person.

Recommending conditions

The code of practice for the deprivation of liberty safeguards (Ministry of Justice, 2008) highlights that attaching conditions to a deprivation of liberty standard authorisation should relate to the restrictions and should not be used as a substitute for a properly constructed care plan. As the conditions in a deprivation of liberty authorisation are binding on the hospital it is good practice for the best interests assessor to discuss proposals for conditions with the staff caring for the protected person (Ministry of Justice, 2008: paragraph 4.75).

To ensure that conditions are appropriate to the protected person they must (Welsh Assembly Government, 2009):

• Be relevant to the role of the managing authority
• Relate directly and specifically to the deprivation of liberty, and
• Should not be general in nature, or
• Be a lever to improve the overall care plan.

To ensure that those requirements are met best interests assessors and supervisory bodies are required to subject any proposed conditions to a ‘but for’ test. That is, would the conditions be needed ‘but for’ the protected person being deprived of their liberty. A valid condition would be one that meets that test, it is needed only because the person is being deprived of their liberty.

Purpose of conditions

The code of practice to the deprivation of liberty safeguards (Ministry of Justice, 2008) suggest that conditions might be used to:

• Ensure the deprivation of liberty is secured
• Limit the restrictions that amount to a deprivation of liberty
• Work towards ending the deprivation of liberty.

Ensuring the deprivation of liberty is secured

The code of practice (Ministry of Justice, 2008) suggests that conditions could be imposed on a deprivation of liberty authorisation to ensure that the deprivation of liberty is secured. This might arise where it is necessary to ensure that the person will not leave the hospital. In A local authority v D [2013] a woman with Huntington’s disease was prevented from returning home to her husband following a period of respite care. The husband was also denied access to his wife to secure the deprivation of liberty by preventing him from taking his wife home.

Although conditions can be used to immediately secure a deprivation of liberty, the use of conditions for such purposes must only be for a short period. A deprivation of liberty safeguard authorisation cannot generally be used to authorise limited or no contact with the protected person. ‘No contact’ issues can only be authorised by the Court of Protection. The code of practice to the deprivation of liberty safeguards stresses that it must be for the Court of Protection to make decisions when contact between family members or close friends is being restricted. The deprivation of liberty safeguards cannot be relied on to manage no-contact cases.

In A local authority v D [2013] the Court of Protection held that the delay of some 3 months between the initial authorisation of the deprivation of liberty and bringing the case before the court was a breach of the couple’s right to respect for a family life under article 8 of the ECHR (Council of Europe, 1950) and an unlawful deprivation of liberty contrary to article 5 of the ECHR. Damages were awarded to both the husband and wife for these breaches.

Limiting the deprivation as much as possible

This purpose allows best interests assessors and supervisory bodies to impose conditions where they are satisfied that the restrictions being imposed are disproportionate to the risk of harm. The conditions can be used to ensure that the protected person continues to enjoy access to fresh air or meaningful activities, or to maintain social contacts.

Working towards or bringing about an end to the deprivation

Supervisory bodies can use conditions for this purpose to ensure the person’s timely and appropriate discharge from hospital. The conditions might require assessment to facilitate discharge to be completed within a given time frame. This might include obtaining a occupational therapy home visit assessment report or a physiotherapy report.

Conditions are binding on managing authorities

The Mental Capacity Act 2005, schedule A1 paragraph 53(3) states that:

‘The managing authority of the relevant hospital must ensure that any conditions are complied with.’

The Mental Capacity Act 2005 schedule A1 paragraph 4(3) also states that:

‘In a case where an authorisation is in force, a person is not authorised to do anything which does not comply with the conditions (if any) included in the authorisation.’

The Local Government and Social Care Ombudsman found that Barchester Healthcare had failed to fulfil the conditions attached to a man’s deprivation of liberty authorisation that related to the provision of meaningful activities and his interaction with a fellow resident. The man’s wife felt compelled to find her husband a different care provider due to these failures. Barchester Healthcare offered a £5000 payment in recognition of their shortcomings relating to the authorisation conditions, which the ombudsman found to be appropriate in the circumstances (Peart, 2020).

Changing or removing conditions

The only lawful way for a hospital to vary a condition attached to a deprivation of liberty authorisation is to seek a review of the best interests requirement under part 8 of schedule A1 of the Mental Capacity Act 2005. Varying in this context includes amending, adding to or omitting conditions. Where a request for a review is received then the supervisory body will commission a best interests assessor to reassess the protected person’s best interests and make recommendations as to whether the supervisory body should vary the conditions.

Enforcement of conditions

In Re W [2016] the Court of Protection held that it was for the supervisory authority that had granted a standard authorisation, under the Mental Capacity Act 2005, to deprive a person of their liberty that was responsible for monitoring compliance with the conditions it had imposed. The frequency of such monitoring depended upon the circumstances of the case rather than there being any need to fix a period that would be applicable to all authorisation cases.

Conclusion

Under the deprivation of liberty safeguards, local authorities and health boards, in their role as supervisory bodies, can attach conditions to a deprivation of liberty authorisation to ensure that the restrictions imposed on the protected person are necessary and proportionate to the risk of harm the person faces. Conditions are binding on the hospital where the person is being deprived of their liberty and it would be unlawful not to implement the conditions attached to an authorisation of a deprivation of liberty. It is the duty of supervisory bodies to ensure the conditions they attach to authorisation are implemented by the hospital through regular review and monitoring.

Key points

• A supervisory body can make the authorisation of a deprivation of liberty subject to conditions that are legally binding on the hospital
• Conditions attached to a deprivation of liberty standard authorisation must relate to the restrictions and should not be used as a substitute for a properly constructed care plan
• Conditions must meet the ‘but for’ test to be valid
• Conditions are binding on the hospital where the person is deprived of their liberty

It is as though Elizabeth’s human rights are being completely abused.

I would like to see some kind of Landmark case. I cannot find a solicitor to help. I cannot sit by and do nothing whilst my daughter is being abused. It is organisational abuse at the worse and those at the top of the Trust whilst saying they take my complaint seriously cannot be doing so because it is now 2.5 years of this same abuse and noone should have to go through what I am going through or my daughter.

I am not going to sit back and do nothing. I wish I could find a solicitor but unfortunately this Government has made things impossible to get someone to back you in the High Court which is why there is no justice.  Occasionally a case comes to court and there is a new ruling and this is what I would like to see. I know there are so many others in my situation who have had their sons and daughters taken from them and contact severed.

I have been accused of writing 70 letters - I most certainly do not recall writing 70 letters coming from me. It has been mentioned by Elizabeth Dr’s his concerns on my mental health! He is not even my doctor – what on earth is he talking about and this is not good or right in front of other people at a meeting.  I told him I have no concerns about my so called MH and that he should be concerned about my physical health instead as this is most important.  I have to keep up my strength in this dreadful situation to keep going and my dream would be more places like Simons Trust where parents are valued not abused. I have been told I am not allowed to speak to the carers champion any more. There are all these things going on for carers such as Education but I have educated myself and I have concluded that there is a massive problem under LPFT and that problem is bullying and abuse towards anyone who so much as dares to challenge what they are doing which is very wrong and there is NO ACCOUNTABILITY.

I have now had to go down the ultimate route without support or backing from solicitors.

First the Post Office scandal but there is one scandal left to be challenged and that can only be challenged in a court where there is justice. There is no way I would have wanted to challenge at County Court a decision that would have put me up against my younger daughter however I do wish to challenge matters on behalf of my daughter in the High Court and I hope this will be possible.

Both Elizabeth and I want publicity over this and I have proof. Please do whatever you can to get me out of here.  That is what I intend to do somehow.