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

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

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

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

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

Zuclopenthixol Acetate Physical Health Monitoring Form:

Patients who are sensitive to extrapyramidal symptoms (EPS)

Patients who are pregnant

Patients who are unconscious

Patients who have advanced hepatic or renal impairment

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

Patients with history of seizures or epilepsy.

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

Rapid Tranquilisations

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

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

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

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

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

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

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

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

Elizabeth has a large sebaceous cyst on her head.  This is well associated with the long-term use of neuroleptic medications.

That also needs a medical appraisal done.  This is not simply a cosmetic ADR but indicates a potential endocrine disorder linked to her inability to metabolise drugs. Incidentally this has also been known about for years.  Sebaceous cysts are NOT benign.  For one thing they may mask subdural lesions and inflammation making them difficult to define

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

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

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

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

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

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

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

HERE ARE THE PATHOLOGICAL TEST DETAILS I AM REQUESTING:

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

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

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

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

Richard Money-Kyrle

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

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

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

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

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

How would Martha’s Rule work?

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

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

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

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

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

Improving patients’ access whilst maintaining doctors’ responsibility

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

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

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

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

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

What happens next?

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

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BENZODIAZEPINES

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

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

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

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

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

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

Prescriptions Issued Contrary to Agreed Policy

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

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

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

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

Patients to Receive Comprehensive Reviews

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

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

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

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

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

Medscape News UK has asked CGL to comment.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

MESSAGE TO LINCOLNSHIRE PARTNERSHIP TRUST AND COUNCIL

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

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

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

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

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

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

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

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

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

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

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

How we will work with you?

Allocated bedroom, named nurse and consultant.

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

So far the doctors under Lincolnshire Partnership Trust have been:

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

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

3. Dr Ismail again

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

5. Dr Islam

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

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

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

9. Dr Mohammed of Ward 12

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

A total of 10 doctors

Hospitals under LPFT alone:

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

2.Ash Villa Sleaford

3. Cygnet Appletree

4. Ward 12

5. Castle Ward Lincoln County Hospital

MY FIRST VISIT TO CASTLE WARD

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

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

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

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

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

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

So what has upset me about Castle Ward? ……

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

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

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

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

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

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

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

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

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

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

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

Elizabeth has twice had covid at Ash Villa

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

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

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

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

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

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

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

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

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

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

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

ENCEPHALITIS

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

What is the life expectancy with encephalitis?

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

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

How many people have died from encephalitis?

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

What happens if encephalitis goes untreated?

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

Can encephalitis go undiagnosed?

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

How does encephalitis affect behavior?

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

Can encephalitis lead to dementia?

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

Does encephalitis cause altered mental status?

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

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

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

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

HUNTINGDON’S DISEASE:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I hope you find the response from the Minister helpful.

Yours sincerely

Victoria Atkins MP

Member of Parliament for Louth and Horncastle

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

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

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

LETTER FROM MARIA CAULFIELD MP DATED 02.08.2023

“Dear Victoria

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

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

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

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

I am sorry I cannot be more directly helpful

Yours sincerely

MARIA CAULFIELD MP

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

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

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

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

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

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

Here are the doctors from Ash Villa:

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

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

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

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

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

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

Dr T Greenall

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

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

Dr Memon – Cygnet Appletree

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

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

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

Dr Mohammed – Ward 12 Boston

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

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

Castle Ward Lincoln – transferred Wednesday 9 August 2023

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

Response from Maria Caulfield:

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

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

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

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

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

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

FREDERICK STREET MEADOWFIELD

COUNTY DURHAM DH7 8NT

Dr Khalli  Memon (RC)

Transferred from Ash Villa Sleaford Elizabeth was placed on Pippin Ward

Elizabeth was taken there on 28 June 2023.

Ash Villa, Sunday 25 June 2023

Turned up without scheduled appointment as I was unexpectedly in the area. Elizabeth was still in her nightdress nightdress late afternoon.  I had brought her Mexican food.  When I arrived at one point I sat in the foyer and heard that a nurse/deputy manager had alleged she had been pushed but there were varying contradictions on account of what actually happened.  Elizabeth claimed to be in her room at the time and the nurse said she was sitting on a chair however Elizabeth’s account of what happened was very different to what the nurse said. I was informed by Elizabeth the following comments were made:

“I am coming into your personal space and do not give a s**t”.

That would have been provocation and I know this goes on, especially at this institution run by LPFT where I was approached in the grounds outside by several patients who had informed me Elizabeth was being picked on and abused and frequently injected and put in seclusion and that they, the patients were doing the safeguarding. She was certainly treated very differently to other patients as though she was on a DoLs and like a restricted prisoner. Then I found out for 20+ months this facility was being provided and paid for by Enfield, my former area where we could no longer stand living there.

Police were apparently informed. So I made sure when I got home I called the Police myself to ensure they heard Elizabeth’s account of what happened and I got a reference number myself. Each time I asked Elizabeth to repeat what happened, her words did not differ. The alleged incident led to Elizabeth’s abrupt transfer to PICU Unit Cygnet Appletree, Durham completely out of the blue.

Arrival – Cygnet Appletree 28.06.2023

Elizabeth had her phone at Cygnet Appletree to begin with on arrival.  She texted me on arrival.

At 03.03    26.06.23 Elizabeth stated:

“sorry Mum they sprang it on me and I had to leave the hospital to go to PICU”

She then texted me to stated “Meadowfield.”

She then texted me to say “I’ve got a nicer room here at least”

“I got treated to a big mac and fries and chicken nuggets” – message at 03.05

“I have passed on your phone number and they will contact you in the morning”.

“When r u coming to see me?”

“I would like some money”

26 June 2023

“Can you pl buy me some shorts and bring them when you next come plus some sungod sunglasses renegades”

She repeated she wanted some Sungod renegades sunglasses from youtube.

She also asked me “hello when are you coming”? at 16.07.

She had asked for money but when I phoned the hospital they do not have a deposit account for patients.   I ordered a pre paid card as being in hospital would not like actual bank card to go astray.

Elizabeth had not picked up any messages since Wednesday 28^th June at 16.08.

I did get a call from someone the next day but it was very brief.  Just to say she had arrived safely but no further information given.    That is the last I heard from her.

Telephoned Cygnet 01.07.2023

Spoke to nurse HANNAH BROWN Pippin Ward.

I asked if Elizabeth had her phone with her and that I could not get through.  I was told  “sorry I cannot give you any information”

I told this nurse that we pay a contract for the phone.  Again she could not give any information.

I asked about visiting hours and was told to call back in the week.

I felt distinctively like they were deliberately not allowing me to speak to Elizabeth and that her phone had been taken away as she had been asking me to visit. In fact I later found out her phone was confiscated because she had called Police in desperation.

I was informed by this nurse she had to hang up and could no longer continue to speak to me any more as she was the only nurse on duty and there was an alarm going off.   When I questioned her being the only nurse on duty she then reported that there was another nurse there but she was in a meeting.

I was told to ring back in the week.

04.07.2023   Telephone call to Cygnet Appletree

Spoke to Kim – reception who told me there was no direct line to ward or ward phone number to ring on.

She then transferred me to ward – no answer at first so was holding on a long time.

Then spoke to Aaron – Support worker

Then spoke to Adrian – a nurse

Finally spoke to Keeley, Ward Manager who told me Elizabeth had her phone but I questioned this as no messages had been picked up via WhatsApp since since 27 June.

Because I am no longer nearest relative (only Power of Attorney) no one would speak or give me any information but I was not asking for any information.  They would not say how she or allow me to speak with her directly.   Elizabeth has been sent a long distance from home right now – at least 3.5 hour journey there and another 3.5 hours back.

I told Keeley that I needed to speak to Elizabeth as she had asked to see me and I wanted to discuss something with her. I was told that they would pass on the message and if she wanted to get in touch she would. I felt as though contact was being deliberately denied.   I said that I would telephone every day until I spoke to her, that way I would be building up a record as I felt sure that they were depriving contact by not allowing her to have her mobile when other patients were allowed in fact.  Keeley admitted some patients were allowed their mobile phones whilst others were not.   I said surely that was discrimination so she said that it depends on the risk level.   What risk exactly?  I am 3.5 hours away now and cannot visit and this was the one thing Elizabeth enjoyed ie my regular visits whilst at Ash Villa.   So I have decided to ring every single day to build up a picture before deciding upon what action to take.  I have already been told that I could not visit at this stage.  At Ash Villa I was aware Elizabeth had no solicitors and other patients were trying to help her appoint them. On a couple of occasions Elizabeth picked up the phone herself but solicitors did not bother to come and see her or respond. There is no saying whether Elizabeth has got any solicitors acting for her at Cygnet either or whether her nearest relative was helping in this regard or even aware of where she had been placed.

05.07.2023   12.40  Another family member spoke to  Catrina, a  Support Worker on Pippin Ward.  She said she would take Elizabeth to a room so that she can make a call back but no call back was ever received.

Subject: Re: Elizabeth’s Move to Cygnet Appletree

“It is of course the case that the MDT have every right to refer Elizabeth to the PICU and the medical & social work professionals will be the final decision-makers on these issues.  It is PICU policy however that the patient in a PICU is “Nothing about me without me”.  That means that the patient effectively has the last word. No they dont! certainly not to frequent torture of rapid tranquilisation.  No patient can be compelled to take part in the OT and psychotherapy so a simple refusal to do so means they will not be forced.  If they maintain this position they will be returned to the psychiatric hospital. No psychological input given whatsoever just like at Ash Villa and Charlesworth Ward Lincoln. 

Cygnet and Ash Villa can of course transfer Elizabeth back to Ash Villa if she does not respond to interventions or if she tells them she wants to go back there.  Patients are not compelled to remain in the PICU and can be returned to adult care wards.  This often happens within the first six to eight weeks if the ICU interventions don’t work or the patient will not engage.  Elizabeth did not want to go back to Ash Villa and as for interventions every few days it would appear she was injected. I have now requested to know how many times.

The advantages of the PICU over the acute adult care ward are obvious, the presence of a psychopharmacologist alone is miles better than that seen on wards.  Not helped one bit – frequent rapid tranquilisations given.

It is my opinion that the visits will be limited in the early stages of Elizabeth’s stay at this place.  They need time & space to commence the interventions and as I have just said if it doesn’t work they will transfer her back to Ash Villa indefinitely. Never got to visit because of distance but was planning to. Absolutely nothing whatsoever has worked because of no psychological input.

Sent: 01 July 2023 19:00
To: susan bevis
Subject: Re: Catalogue of events

The treatment period in ICU/Rehab is between one and two years.  It involves psychotherapy, work regimens and other time consuming interventions as well as monitored medication. Nothing but rapid tranquilisation.

It is possible that Lincolnshire Social Services have been in touch with the PICU regarding the recent litigation.  It is social services that are responsible for paying for the s.117 aftercare not the NHS Trust. This is not aftercare it is a hospital facility well and truly out of area and must be costing I assume LPFT an absolute fortune.

It is unlikely this will be permanent as there is case law preventing the exclusion of family but they will certainly want to exercise close control since rehabilitation involves far more intensive involvement between staff and patients.  Elizabeth is undergoing exactly the same process in a similar unit.  She is given more leave and the accommodation and food are a major improvement on the acute admission unit.   Never got to have leave as she has now been transferred back to Boston today 05.08.2023.

The major problem is the loss of the NR status which means they do not have to communicate with you regarding Elizabeth’s care.  This is unacceptable as a carer you should be communicated with. The MHA 1983 negates the medical provisions of any POA so you cannot invoke that.  To recover the NR status  would require a challenge to ******* again.  It is exceedingly unlikely that would succeed. That is because the whole court process should be open, transparent and honest.  This is public money and Elizabeth like myself want this to be made public. I have therefore requested that this is done. There needs to be accountability in evidence.

On Saturday, 1 July 2023 at 18:32:04 BST, susan bevis <susanb255@outlook.com> wrote:

DR MEMON CALLED FROM CYGNET –  HE SEEMED VERY NICE AND SEEMED TO GENUINELY LISTEN.  HE WAS INTERESTED IN SEEING THE PRIVATE MRI SCAN RESULTS I HAD DONE ON ELIZABETH BUT I SAID I NEEDED HIS EMAIL ADDRESS TO SEND THIS AND OTHER INFORMATION.  STILL WAITING FOR THIS ON 10 JULY 2023.  I MENTIONED TO DR MEMON THAT NOW ELIZABETH WAS A LONG DISTANCE AWAY FROM HOME AND AT LEAST 3.5 HOURS JOURNEY AND I ASKED HIM WHAT FLEXIBILITY COULD BE OFFERED IN TERMS OF VISITING HOURS.  I MENTIONED THAT ELIZABETH DID NOT HAVE HER PHONE AND WE HAD NO CONTACT AND HOW AWKWARD IT WAS TO KEEP IN CONTACT NOW AS I WAS USING WHATSAPP TO MAKE CALLS AND SEND PHOTOGRAPHS OF HER CAT.

THURSDAY 6^TH July  CALL AND VOICE MAIL MESSAGE FROM KEELEY, WARD MANAGER OF CYGNET APPLETREE AT 18.07

MONDAY 10.07.2023     16.14

Received a voicemail message from Elizabeth – first time I have heard from her since moving to Cygnet Durham on 28 June.  

At 16.15 just had the phone put down on me by a member of staff at Cygnet who refused to give her name and said she would pass my call on to her manager.  The Manager of the ward is namely Keeley.   Elizabeth did not sound good on the phone at all and sounded quite distressed.

“Hi mum it’s me Elizabeth I’m not having a good day” please can you call me back on the ward.   She then gave me the number of the ward which is 0191 378 2747”  Now waiting for the ward manager to ring me back that is if I ever get to hear from her.   Time is 16.21    MONDAY       10.07.2023.

I had initially complained about the problems getting through on the phone. Here is the response I received:

Our ref: ENQ1-16584485228

Susan Bevis

Via email: susanb255

25^th July 2023

Dear Mrs. Bevis

Re: Service manager’s review of complaint dated 25^th July 2023

I would once again like to thank you for bringing your concerns to my attention. The investigating officer has looked into the concerns that you have raised and has shared the outcome of their investigation with me. iNCORRECTLY

I have considered the findings from the investigation and I set out below my response to each of the points that you have raised. You have told us that:

You are the mother of vulnerable 36 years old daughter, and 4-5weeks ago she was moved to new service Cygnet Appletree and daughter is under section 3. Caller stated she is autistic and cannot stand the noise and has been moved hundreds of miles away from family so you stated this is Article 8 of human rights breached. Not quite! I stated her phone had been taken away/that we could not get through on the phone. That is what I meant as being in breach of Art 8 HRA.

I have spoken to Dr Memon who confirmed that he had been in discussion with you regarding the care and treatment of your daughter. I will confirm what he has informed me by providing extracts from his email.

I have spoken to Susan Bevis mother of EB on 6^th of July and had a lengthy discussion around EB, reason of her admission to us and explained how we work and provide care to her daughter. I reassured her that we will try our best to provide best care possible to EB. We have recognized that the ward which is PICU can be noisy and we have continued to liaise with EB’s home team to repatriate her back to her home area as soon as our assessment completed. Since her admission, we have had meeting with her home team as well as home team attended ward round every week in order to get update EB’s progress.

For the past two weeks we were clear in our conversation that she can be transferred back to her home area whenever bed is available because of her being sensitive to noises and her being settled with her mental health,. We received an update from home team that she may be return back to her home area next week but it depends upon local bed availability. I tried to contact her mum on 14^th of July 2023 but call went on to voice mail and message was left to contact me. To sum up we already recognized and started liaising to her home team to transfer her back to nearby home area.

While we were waiting to hear from her home team around her transfer back to nearby home area, EB has been given section 17 leave to spend time outside the hospital and small radio as well as ear defenders have been given in order to reduce level of noise and has been given opportunities to involved in ward base activities. During the ward round on last Tuesday team discuss this with EB and she was very happy and appreciated the care she is receiving from Appletree.

Having taken into consideration the comments of Dr Memon I cannot uphold this part of your complaint. There was only one thing and that was being able to get through on her phone but now I have other much more serious concerns.

Second concerns around Phone: No it was about the phone and contact difficulties I complained about.

I have been informed and discussed in our multidisciplinary meeting that EB’s phone was removed because her calling to emergency services inappropriately and it was causing distress to Elizabeth, which can impact on her mental health. No again she was distressed on being so far away from home in a strange environment and she called police in desperation. She claims to be autistic and has sensory issues. It was her transfer and trauma of being transferred that led her to call police.

Following detailed discussion in the multidisciplinary meeting, the outcome was to commence two supervised periods of using phone within 24 hours till she becomes more settled. It was observed and noted that EB was using phone appropriately during twice supervised period and did not show any distress, therefore phone was return back to her on 14^th of July 2023 without any concerns.  I have personally spoken to Elizabeth and she was ok with it. Elizabeth had no say in anything. We were not happy as we pay a contract on the phone. She is no better and you have not provided any psychological input which is atrocious same with Ash Villa.

I am satisfied that no member of staff is preventing Elizabeth from calling you and therefore I cannot uphold this part of your complaint. When I called as I have accurately noted, it took several people before finally reaching the manager and this had nothing to do with confidentiality as we pay for a phone contract.

I appreciate you taking the time and effort to raise your concerns. Concerns raised

provide us with an opportunity to look at the care and treatment that we provide

and to learn lessons.

Whilst I am unable to uphold the issues that you have raised, I do accept

that they are valid concerns from your perspective. I hope that my responses

reassure you that I have given serious consideration to the matters that you have

brought to my attention. Nope I am not satisfied – eventually she got her phone back but it was distressing not being able to get through and having no contact.

If you have any concerns arising from the above, Dr Memon or Keeley Syed, Ward Manager, would be happy to discuss these with you. Alternatively, should you be dissatisfied with the response that I have provided the next stage in Cygnet’s complaints procedure is to request an Operations Director’s review. The Operations Director for Cygnet Appletree is Mrs. Frances Bergin. Cygnet Hospital Appletree. Frederick Street North. Meadowfield. Durham DH7. I shall be writing about wanting to know how many times my daughter was rapidly tranquilised as I know that this was being done very frequently as I had been keeping records of what Elizabeth told me. Also I wish for her new shoes that went missing to be replaced and so I will be sending you the receipt for reimbursement.

Should you request an Operations Director review please set out clearly the elements that you are dissatisfied with and the reasons why. Yes I had further concerns of an even more disturbing nature and requested to know how many times had Elizabeth been rapidly tranquilised following frequent moments of inconsolable distress? I am waiting to hear this.

Thank you for taking the time to make us aware of your experiences. Our experience has been appalling because it was most distressing not to be able to get through.

Yours sincerely,

Martin Graham

Hospital Director

Cygnet Hospital Appletree

This is the kind of thing I have heard numerous occasions “lessons learnt” Nothing is ever learnt so it would seem.

TRANSFER TO WARD 12 PILGRIM HOSPITAL BOSTON 05.08.2023

No-one in the family had been notified but this evening I got a call from Elizabeth to say she had been transferred to mixed ward Ward 12 at Pilgrim Hospital. I was far from happy as no-one informed us. Also this ward is highly unsuitable because it is a mixed ward and another dormitory ward completely and uttlerly wrong! She is now 1 hour’s journey away and now back under NHS “care” of Lincolnshire Partnership Trust. I am assuming they (LPFT) not Enfield are now funding hospital care in this area as previously Ash Villa was paid for by Enfield. No wonder why I was cut out of all the meetings etc. I bet the ward and facilities are nothing compared to private sector Cygnet that had ensuite to every bedroom. Surely that should be the basic requirement for any MH ward. A dormitory accommodation had previously proved to be totally unsuitable as per Charlesworth Ward.where Elizabeth tried to gouge her eyes out in distress because of the noise and had to be put in a side ward. However there is a patient occupying the side ward because of possible covid. It is also a mixed ward which will be quite teryfying

If you weigh up the risks Elizabeth would be better off at home. The annex has been built now. Nothing I can do right now but any changes and unfamiliar surroundings is like hell on earth for my daughter who now has frequent bouts of “inconsolable distress” and all thanks to her appalling treatment under LINCOLNSHIRE PARTNERSHIP TRUST. We moved to try to provide the right environment. We overlook the sea and beach. The area is beautiful and the people friendly. I am heartbroken that LINCOLNSHIre PARTNERSHIP PARTNERSHIP TRUST AND COUNCIL have treated us like objects and have failed in every way. The facilities are totally wrong for Elizabeth. A care farm or Camphill Community Trust would have been better. She has had food and water snatched and been subject to frequent rapid tranquilisation. When is this ever going to end. It is like a never-ending nightmare. Staff do not understand how to communicate with my daughter and choose to ignore her constant statements that she is autistic.

They have also failed to properly assess her for her physical health denying referrals to an endocrinologist but now I have the genetic tests which I managed to find. I now would like referrals to an immunologist/geneticist. I have had to pay privately for the MRI scan as this was being denied to her. Her discharge note states ONLY PHYSICAL “ABNORMAL FINDINGS ON SCAN POINTING TO CNS. WELL NOW I WANT TO KNOW WHAT THAT MEANS EXACTLY.

“It seems odd that after all this time that no progress has been made at all in Elizabeth’s recovery. My initial presumption is that she ‘s been medicated with drugs that she is treatment refractive to.  We have discussed this on many occasions.  If she cannot metabolise the drug it will not ameliorate her condition.

It seems we have gone back in time to the Victorian asylum model where Ash Villa is concerned.  

It is a terrible shame that some still want to lock patients away and throw away the key after all the progress that was made.  Some patients had been stuck on wards for years but it was amazing how rapidly they recovered with support in the community, some had jobs and looked after their own budgets and appointments. Presumably it is to do with the control of the aftercare.  They want to either discharge EB to sheltered accommodation or send her there on extended s.17 leave

EB is being kept for a ridiculous length of time on an acute ward.  That is now encroaching on the human rights issues, unwarranted deprivation of liberty, Art. 5 ECHR, in excess of what is necessary for safety and treatment, violation of Art. 8 family and privacy rights and of course the abject paranoia that has been directed towards Susan’s blog, Art 10 ECHR.

In the community the tests can easily be arranged.  Endocrine function is the province of immunologists and the limbic system the job of the neurologist.  A GP referral will of course be needed.

Ash Villa is a shambles and LCC and LPFT are struggling not very effectively to hide that.  The treatment of eLIZABETH is incompetent and the over zealous use of PRN and seclusion a human rights violation.  That is what they want whacking with.

The failure to carry out a proper capacity assessment and the refusal to properly investigate potential medical conditions interfering with the treatment is staggeringly unprofessional.  If EB has an endocrine disorder and she almost certainly does.  If she had inflammatory disorders they would interfere with the drug metabolism.  We already know she is a poor metaboliser but they continued nonetheless to treat her with medication that almost certainly would not work.  This should be thoroughly investigated and I suspect they do not want an NR that might insist on it.  

It is not ‘low dosage’ or ‘high dosage’, it is minimum therapeutic dosage.

The test is serum concentration and not daily/weekly/monthly dosage.

Maximum doses or anything like them are never justified.  If a patient is not responding within the therapeutic band it is extremely likely that they are poor or non-metabolisers. 

They are NOT treatment refractive.  A disgraceful attempt at making this a medical definition when it is a pharmacological one. 

If a patient is a poor metaboliser increasing the oral or parental dose will make no difference.  This is all to do with CYP450 cytochrome’s.

What I find absolutely staggering is that my 21 year old third year students understand this quite clearly while many 50 year old psychiatrists have not got a bloody clue. ” 

The greatest punishment is to send a vulnerable person hundreds of miles away from home and family and for contact to be virtually severed as we have experienced under Cygnet Appletree.

I used to visit Elizabeth every week and my journey time took three hours in total but now it would take me 7 hours and require an overnight stay which is expensive if you visit regularly.

To send someone away hundreds of miles like this is cruel and even more cruel to take the phone away that we as a family pay for under contract.

We used to correspond by text messaging via WhatsApp but the last time Elizabeth picked up her message was on 28 June 2023.

When you phone Cygnet Appletree you get put through to a succession of people. There was supposed to be a meeting about contact following a call that came out of the blue by the Responsible Clinician of Pippin Ward. Nothing has changed because still the WhatsApp messages were last viewed on 28 June 2023.

Day before yesterday I had a voicemail message, the first message I have ever had from my daughter stating she was not doing well that day and was clearly struggling. I immediately phoned the ward and as usual got put through to several people ending up speaking to the ward manager, Keeley who said that Elizabeth did have her phone so I said in that case how comes her WhatsApp messages had not been picked up since 28 June? I asked for the phone to be given back to Elizabeth but this was not done. It was then admitted that the phone was charging. We pay a monthly contract on that phone.

Today I spoke to the ward secretary as she had contacted me as Cygnet Appletree want the private scan results but when I asked for the email address to send these to she asked me to send them to her email address. I did not have a pen handy at the time so I asked her to write to me so I had her email address. Just looked and no email received.

There are no plans as yet to visit and virtually next to nothing in contact with my daughter with former hospital having involvement. A former NHS hospital is responsible for sending my daughter far away namely Ash Villa. When this is done absolutely no consideration is made towards the carer and no assistance with any costs yet there is an abundance of funding towards a very expensive facility namely Cygnet Appletree where Elizabeth is now held and is clearly missing home, asking about her cat and when I will visit next. It would appear that smoking is allowed at this private hospital as Elizabeth has said she has started smoking again.

The Responsible Clinician actually sounded quite nice when he phoned me and promised contact would be reviewed but really nothing has changed. If things had changed then she would have her phone back and be able to pick up her messages.

Without any warning or communication from staff at Ash Villa Elizabeth has tonight been transferred three hour’s journey away to Durham but that will not put me off visiting. In fact I am looking forward to visiting Durham. Looks a nice area and very interesting too. Because I will be a frequent visitor I am interested to hear of anyone who can recommend places to stay and we live in a beautiful place too. If anyone knows people living in Durham I will be interested to hear from them. The only thing that has spoilt things has been our experience under Lincolnshire Partnership Trust and Lincolnshire Council who have seen fit to leave my daughter on an acute MH ward after 20 months to go downhill. I am even thinking of the possibility of working there in Durham as well as well as another area also to bring me closer to my relatives.

https://www.bbc.co.uk/news/uk-england-tyne-58323174

I do not know much about this hospital even though the above article concerns me as Elizabeth is of high risk of mortality and I hope that Durham PICU Unit at Cygnet Meadowfield will treat Elizabeth better than Ash Villa have rated “good” by CQC. I cannot comment yet it is too early but I have to say Cygnet has not been the very worst. The very worst has been NHS care who fail to provide proper facilities such as Ash Villa. For instance to gain accreditation you need to have ensuites. Also there was no psychologist. Also Ash Villa is in breach of serious health and safety failings with needle coverings left on Elizabeth’s table and a faulty bed. Elizabeth has given consent to the CQC to investigate and I intend to pass this on to the CQC as it was Elizabeth’s sister the nearest relative who has complained this time about the shocking facilities. Now under huge investigation Ash Villa have decided to transfer Elizabeth hours away but nothing is going to put me off visiting my daughter. I have to say that Cygnet have respected the fact that Elizabeth is a poor and non metaboliser of psychiatric medication in the past.

I would also point out to Cygnet Meadowfield that I had a private scan done when refused by Ash Villa and found there was inflammation of the brain. Therefore Elizabeth needs to be on minimal amounts of medication. There is also the P450 liver enzyme tests to consider as well as the genetic tests I had done and endocrinology that needs to be further investigated.

Elizabeth was being picked on by certain members of staff at Ash Villa befitting of Panorama. Having food and water snatched away for one, breaches of health and safety for which I have photos, rapid tranquilisation given frequently and seclusion in the absence of any physical healthcare, being left without dentist appointment though I believe this has just been done, being told that chiropody is not provided under NHS care which is a load of rubbish. Being misled in terms of the fact of whom is paying for the so called S117 aftercare which is the department run by Lucy Omezi of Enfield Community Rehab and waiting still for the care act assessment by AMHP Hannah kAJUE. What kind of system is this! There needs to be something urgently done. Until the system is changed nothing is any better. Abuse is rife and so is bullying and we have had our fair share.

I would like my daughter transferred back to Lincolnshire where we live now and would prefer her to be transferred to a very nice unit I visited that she liked so very much. I am going to put this to Sarah Connery and have just written to her. In the meantime my complaint has escalated to every single ombudsman including legal ombudsman and social work england. The PHSO have tried to say they did not receive consent to get out of investigating and that this would mean timing was not within the limits. However I managed to find in my records the consent authorisations that Elizabeth wants this to go forward which is well within the timings and so I do not accept their excuses. I would like a full investigation into my daughter’s horrific treatment and prolonged ordeal at Ash Villa, an acute ward with most unsuitable facilities and also into Enfield who failed to do a care act assessment and give S117 aftercare which was the reason why we moved. I have today written to the Commissioners to ask what arrangements are in place for me to be able to visit like I was doing before eventually. Bearing in mind at first Cygnet will not allow six hours unescorted until they get to know me so therefore the least LPFT not NCLICBENFIELD as previously thought who have money to burn can provide the necessary overnight accommodation as well as travel expenses as it is double the amount of journey I would be doing in Lincolnshire. It is on the borders of Scotland so I see but I am not put off by this journey. There has also been two unlawful sections under the MHA under Enfield for which I won £1 compensation but I am still waiting for compensation for the second unlawful detention which I have calculated is more. Dr Ilyas Mirza was the RC in the community in Enfield and he has actually recommended in one of his reports a Judicial Review. I will share that with you another time as I had solicitors appointed for this against Enfield and then this is why she was hauled in and unlawfully sectioned.

Anyway I have nothing to say as yet about Cygnet Appletree, Meadowfield Durham only time will tell.

Elizabeth knows about this blog and I have often asked for her comments.

So far I have heard positive reports from Elizabeth about her treatment at Meadowfield apart from one instance.

She was bought a MacDonalds and the food is nice. She has her phone and can keep in touch with her family. She has a nice room with ensuite shower. There is a wardrobe and shelves to put things away and keep the room tidy. I heard at Ash Villa there was no wardrobe and no ensuite.

After the long journey on arrival Elizabeth had one of her ‘episodes’ and unfortunately five members of staff pinned her down and injected her. I hope that frequent tranquilisations will not be given to Elizabeth as they were at Ash Villa (about 8 in a short space of time) on top of her regular depot. If she had been at home she would have settled without such intervention so this is the first injection given at Cygnet Meadowfield when she had one of her ‘inconsolable’ moments and this is something I see they have been criticised for in previous reports.

God knows how much this facility costs. I am very interested to know why nothing can be provided in the local vicinity. However having written to this department I now find out this facility is being funded elsewhere and I intend to find out exactly who is responsible for paying. It would seem that LPFT are responsible for paying then this is even more interesting as there is absolutely nothing provided in terms of care and services in East Lindsay which is not good. This is of public interest for me to find out especially when the cost of adaptions to the annex I have provided would be nothing in comparison.

Latest inspection summary

On this page

• Background to this inspection
• Overall inspection
• Acute wards for adults of working age and psychiatric intensive care units

Background to this inspection

Updated 20 January 2023

Cygnet Appletree is an independent mental health hospital based in Durham. The hospital is split over two floors and has two wards. Bramley ward (15 bed acute ward), and Pippin ward (10 bed psychiatric intensive care unit) for females of 18 years and over. The service was last inspected in April and May 2021 and ratings for the service were suspended. Enforcement action was taken which prevented admissions. These had been removed at the time of the inspection and we found that the hospital had made significant progress.

The hospital had a registered manager and a controlled drugs accountable officer. Controlled drugs accountable officers are responsible for all aspects of controlled drugs management within their organisation. Cygnet Appletree has been registered with the CQC since 26 September 2012 and has been managed by two other providers during this time. In March 2018, the provider of Appletree became Cygnet Behavioural Health Limited.

Cygnet Appletree is registered to carry out the following regulated activities.

• Assessment or medical treatment for persons detained under the Mental Health Act 1983
• Treatment of disease, disorder, or injury

 Download full inspection report for Cygnet Appletree – PDF – (opens in new window)

Published 20 January 2023

Overall inspection

Good

Updated 20 January 2023

Our rating of this service improved. We rated it as good because:

• The service provided safe care and the ward environments were clean and well maintained. The wards usually had enough staff who assessed and managed risk well. They minimised the use of restrictive practices, managed medicines safely and followed good practice with respect to safeguarding.
• Staff developed care plans informed by a comprehensive assessment. They provided a range of treatments suitable to the needs of the patients and in line with national guidance about best practice. Staff engaged in clinical audit to evaluate the quality of care they provided.
• The ward teams included or had access to the full range of specialists required to meet the needs of patients on the wards. Managers ensured that these staff received training, supervision and appraisal. The ward staff worked well together as a multidisciplinary team and with those outside the ward who would have a role in providing aftercare.
• Staff understood and discharged their roles and responsibilities under the Mental Health Act 1983 and the Mental Capacity Act 2005.
• Staff treated patients with compassion and kindness, respected their privacy and dignity, and understood the individual needs of patients. They actively involved patients and families and carers in care decisions.
• The service managed beds well so that a bed was always available to a person who would benefit from admission and patients were discharged promptly once their condition warranted this.
• The service was well led, and the governance processes ensured that ward procedures ran smoothly.

However:

• The design and layout of Pippin ward meant that there were areas accessible to patients that were out of sight of the nurse’s station.
• The hospital had some nurse vacancies which meant that not all shifts on Pippin had the required 2 qualified nurses.
• Care plans were repetitive and sometimes difficult to follow due to the amount of information in them.
• One patient did not have clear care plans outlining the use of pro-re-nata (PRN) medication and use of intra-muscular administration of medications or rapid tranquilisation. PRN medications are medicines that are used when needed.

 Download full inspection report for Cygnet Appletree – PDF – (opens in new window)

Published 20 January 2023

On the whole I have had positive response to this facility but it is early days of course.

Elizabeth had just arrived and had not ventured out anywhere yet but no pressure was put on her by staff to explore her surroundings.

I shall be featuring in contrast treatment under the NHS and comparisons to private institutions in due course.

Still not had the care act assessment from Enfield. What on earth is going on about this. I need to chase this up.

I wonder what happened to the idea of Elizabeth pointing to a map to choose where she wanted to live.

When I asked how long Elizabeth would be at Cygnet I was told short term. I have directly asked Sarah Connery CEO in this respect. Durham looks a nice area and I have never visited there before but it is such a long way and this leads me to think it might be good if I were to get a job in this area and maybe a job in another area too where another relative is based. When I asked Cygnet how long the stay was they emphasised short term. The longer this stay goes on the more I will have to write about as it is obviously causing problems as I am carer to someone else too.

Today I spoke to Cygnet Appletree about visiting but I was told that it was unlikely to be granted so soon. I still have not got an email address to share information which might be helpful to them as nothing in the files seems to be very accurate and I have very accurate records.

It would seem I got it wrong about Enfield ICB paying for the facility of Cygnet Appletree so I am now assuming it is the ICB under LPFT of which John Turner is CEO. I will check on this and have written to them for confirmation. I am always interested to know how much such a facility costs per week. If only there was proper communication especially where carers are concerned when the person they care for is sent out of area there should be proper support in place and assistance in terms of travel expenses and you should just be able to resume your weekly visits as per before.

From: SEED, Daniel (NHS NORTH CENTRAL LONDON ICB – 93C)
Sent: 29 June 2023 15:09
To: susan bevis
Cc: MCKENZIE, Joy (NHS NORTH CENTRAL LONDON ICB – 93C); nclccg@nhs.net <nclccg@nhs.net>; ROBSON, Jon (NHS NORTH CENTRAL LONDON ICB – 93C); victoria@victoriaatkins.org.uk; Christopher Reid;
Subject: RE: Cygnet Appletree Durham

Good afternoon, Mrs Bevis,

Thank you for your email, and very sorry to hear that your daughter has been placed so far away from you.

I’m very sorry but we are not the commissioners of her current inpatient stay at Cygnet – I assume she has been transferred to Cygnet from her current inpatient stay in NHS Lincolnshire Foundation Trust.

I would advise it is best to speak to the NHS Trust in Lincolnshire to see if there is any way for you to reclaim costs – apologies I am unable to confirm if this would be possible though.

I have however located the below advise from NHS.uk which has further details on travel costs.

https://www.nhs.uk/nhs-services/help-with-health-costs/healthcare-travel-costs-scheme-htcs/

I hope this helps and, am hopeful that your daughter can be repatriated closer to home soon.

Kind regards

Daniel Seed

 
Head of Mental Health

Complex Individualised Commissioning

Chief Nursing Officer’s Directorate

NHS North Central London Integrated Care Board

Email: d.seed@nhs.net 

Team Email: nclccg.cicmh@nhs.net

Tel: MSTeams

Working hours: Monday – Friday 09:00 – 17:00

Web: nclhealthandcare.org.uk

From: susan bevis
Sent: Thursday, June 29, 2023 12:17 PM
To: SEED, Daniel (NHS NORTH CENTRAL LONDON ICB – 93C) <d.seed@nhs.net>
Cc: MCKENZIE, Joy (NHS NORTH CENTRAL LONDON ICB – 93C) <joy.mckenzie4@nhs.net>; nclccg@nhs.net <nclccg@nhs.net> <nclccg@nhs.net>; ROBSON, Jon (NHS NORTH CENTRAL LONDON ICB – 93C) <jon.robson1@nhs.net>; victoria@victoriaatkins.org.uk; Christopher Reid <Chris.Reid@parliament.uk>;
Subject: Cygnet Appletree Durham

This message originated from outside of NHSmail. Please do not click links or open attachments unless you recognise the sender and know the content is safe.

For the Attention of Daniel Seed and Joy McKenzie

Dear Mr Seed and Ms McKenzie

I have had a call from my daughter Elizabeth Bevis who is placed now at Cygnet Appletree in Durham.  As you can appreciate this is a 3.5 hour journey away for me to do and then another 3.5 hour journey back.  My daughter has asked me to visit her.  I have been visiting on a weekly basis so far.   I also have another relative in hospital 1.5 hours away from me but not sure if funding comes under Enfield or elsewhere.   Perhaps you can kindly confirm this.

In order that I can visit my daughter in Durham I would like to know the procedures for claiming back travel expenses and hotel accommodation in the case of Durham.

I am sure you will agree that Elizabeth has the right to a family life under Art 8 and she is asking to see me.  I was visiting on a weekly basis and since you have placed my daughter far away from home yet again I would like to know what measures you have in place for families like myself.

I tried to telephone your office today but was told you do not have phone numbers.  

I look forward to hearing from you the procedures to claim expenses since you are responsible for the funding and I have been guided to yourselves by Cygnet.

Yours sincerely

Susan Bevis    

DEPRIVAL OF CONTACT

“It is unlikely this will be permanent as there is case law preventing the exclusion of family but they will certainly want to exercise close control since rehabilitation involves far more intensive involvement between staff and patients.”

“The major problem is the loss of the NR status which means they do not have to communicate with you regarding Elizabeth’s care.  The MHA 1983 negates the medical provisions of any POA so you cannot invoke that.”

Elizabeth has not had her phone since 28 June and that was the last time she picked up WhatsApp messages yet staff say she has her phone and then contradict themselves by stating it is charging in the office. It has been obvious for some time now that contact has been deliberately denied and that contact should be via her phone which the family pay a contract for.

I did have a call from RC Dr Khalli Memon who promised a meeting to discuss contact with me. Today I have been through several members of staff until finally the ward manager namely Keeley who I had a lengthy conversation with and who promised to look into giving the phone to Elizabeth but despite promises nothing was done.

Here is the message I received:

“It is Elizabeth here. I am not doing well today please can you call me back” so I did. Had the phone put down on me by a member of staff then called back a second time and asked to speak to Elizabeth – the outcome I did not get to speak to her.

I have today phoned the Bed Management Team of LPFT whose Head of Services is namely Gareth Price who have sent my daughter so far away most probably with approval of the MDT of Ash Villa as a leading nurse said about me not having contact for six months from Ash Villa discussed with the NR who displaced me. It seems like this is the plan because the phone is not with Elizabeth that we pay a contract on. With the short three line letter from Bed Management is a lot of carer’s information.

“What is a carers assessment?” Never had one and Enfield have not carried one out. I thought Hannah Kajue from Enfield Community Rehab Team was supposed to be carrying out this assessment but nothing has been done.

The booklet goes on to list the Carer’s Charter and it is important that all carers read this charter. It is all too easy for professionals to disregard carers and treat them like they were invisible and play on confidentiality but I had the phone put down on me when I explained what information could be shared. “carers are encouraged to ask questions and time must be made available by the team to answer”

Professionals will involve carers in treatment plans and in major decisions about the service users care as far as they can.

There is a good practice checklist.

To go and visit Elizabeth needs a lot of planning and also the risk of a lengthy journey and stay overnight only to be refused a visit. I discussed this today with Ward Manager Keeley.

I chose to visit Elizabeth on Sunday as I felt that crowds might have been too much for her on Saturday for Coronation celebrations.

I arrived at Ash Villa around 11.00 am but Elizabeth was not up so I said I would wait longer. Quite often she is tired in the morning as she cannot sleep at night because of noise on the ward or because she is awake all night having slept all day. It was around midday by the time Elizabeth came out with a smile on her face but I noticed bruising and red marks over the side of her face. I then asked Elizabeth about the bruising and she said that she had banged her head through sheer distress of the noise on the ward. Elizabeth is situated near the seclusion room where it is particularly noisy. I have asked countless times for her to be moved but nothing has been done. I then asked a young healthcare assistant if I could speak to a nurse in charge. I was astonished by the response. It was not the fact the senior nurse was too busy but she had commented that Elizabeth scratched herself. However I then said it was the bruising that concerned me and when I went on to explain how the bruising happened after having already heard Elizabeth’s account and that I was prepared to wait for the senior nurse her response was “your time starts NOW!” (time meaning leave) I then said “Oh not it doesn’t”. We waited about half an hour but gave up in the end as no-one came out to see us. My concern is before moving to this area Elizabeth was NOT self-harming. This is the effect of 19 months of shocking incarceration where she has been treated like a restricted prisoner under Lincolnshire Partnership Trust who have put other things as top priority that sadly I cannot write about as much as I wish.

We did not leave until 12.30 am. I was taking Elizabeth to Coronation celebrations I knew she would enjoy. I had read about the event on line held in a small village called Wellingore. It started at 2.00 pm and commenced with the fabulous (Foss Dyke Band) and thereafter three other groups. It was organised by Matt Gardiner, Chair of the Wellingore Memorial Hall and what a fabulous event it was. There was a BBQ and hog roast, bar, ice cream stall, cake stall, WI cake stall and various others. There was also somewhere where you could buy oriental food. More and more people began to arrive and we had to move to a quieter location as Elizabeth was not feeling comfortable in the crowds. Elizabeth went to buy food from various stalls and was very happy. We could not stay long but my first thoughts were how well organised it was and I would say well done to all of those involved/who contributed to this brilliant event.

I then drove back and dropped Elizabeth off. I did not bother to go in and to speak to any staff of my concerns. Instead, I wrote to the two commissioners from each area ie Joy McKenzie and John Turner of my concerns. This is what they are providing.

Elizabeth’s face lit up seeing the small children running around and the dogs brought by families and before we left we bought cakes to share with the friends and food to take back.

On a more serious note getting back to the self-harm, Elizabeth told me that there is a sharp edge somewhere in her room she is aware of. For anyone so distressed like Elizabeth this seems to me a health and safety risk in terms of the facility. It does not seem to be safe but when I drew attention to health and safety at home on the 5 March since then all leave home has been cut. Whatever is the point of this when I requested a few adaptions to make things safer and still nothing has been done so perhaps whoever is responsible for funding – is this Joy McKenzie by any chance? could get matters in place so that Elizabeth can resume her home leave as it is getting warmer now and the annex has its floor down. Still a few things to finish but not one single person from social services has got in touch which shows complacency. If things are so very complicated surely they could communicate effectively to her family and explain the situation but no, this is too complicated for social services in Lincs. If it is not their responsibility then I need to know is it Enfield’s to provide these adaptions but at least say one way or another.

As for the Care Act Assessment at the CPA former area care coordinator HK attended and something about a map and pointing out where Elizabeth wanted to live was discussed. That sound’s interesting a map when there has been talk of a locked rehab yet again. However when I pointed out that “a home of her own” being suggested would be a home owned by someone else Elizabeth understood perfectly as after all she has full capacity. The annex would be a home of her own but requires a few adaptions which would be a darn sight cheaper than a locked rehab which would cost circa £200000. I will get to the bottom of who is paying for this you can be sure and I think it is of public interest.

I am not happy that those at the top of the Trust/Council whether it be social services, ICB or the Trust are keen to allocate others to answer complaints directed to them. Then you get unsatisfactory answers and so in good communication I decided to write to all of them at the top in one email copying in everyone. I will feature this if I get no response or if I get any more unsatisfactory responses.

Last of all Elizabeth shared something with me that it would appear that I am a joke to the majority of staff. Well I have a good sense of humour and it is not that I cannot laugh at myself at times however I would like to hear these jokes in order that I can share them and then everyone can have a good laugh. I then asked Elizabeth if I was joked about in a nice way and then she said “no” but nevertheless I would still like to hear these jokes so anyone from the team who wishes to respond to this please do – let’s hear these jokes lol!