I received the letter yesterday Recorded Delivery but noone signed for it. It was just stuck in the letterbox. According to the envelope it was post marked 12 October and the letter itself was dated 8 October.
I am not going to defend myself as previously stated but leave my readers to judge for themselves.
I have never met the above professionals in my life.
Here is what I have been accused of:
have been personally abusive or verbally aggress towards staff dealing with your complaint
have in the course of addressing or raising a complaint had an excessive number of contacts with the trust placing unreasonable demands on staff
Persist in pursuing a complaint when the trust’s complaints procedure has been fully and properly implemented and exhausted, or it is not within the trust’s remit to investigate.
Are unwilling to accept documented evidence of treatment given as being factural eg drug records, manual or computer records, nursing records.
Using abusive or threatening language
The letter states that the “Deputy Director of Nursing and Head of Patient Experience have reviewed your communications with the trust and concluded that in order to ensure all concerns are responded to through a single avenue, all correspondence from you will be managed under the trust vexatious complaints policy” Let us then cut out the correspondence and choose a much more suitable single avenue and save money on paperwork. I cant think of a better avenue than Twitter.
“The trust has responded fully to the points raised in previous complaints and has tried to resolve the complaint but there is nothing more to add and continuing contact on the matter will serve no purpose. The correspondence around previous complaints investigated is at an end and any further correspondence received will be acknowledge but not answered, although as previously advised, you do maintain the right to request an Independent Review by the Ombudsman. ” Well said! There is nothing more to add because they haven’t got anything to say in their defence. How convenient to end a complaint in this way and avoid answering anything instead of a simple apology.
I have been guided to Pals and a guy called Richard was in contact with me when Elizabeth was sent to Cygnet Godden Green but since then, and that has been quite sometime, there has been nothing but a wall of silence. In other words absolutely nothing has been dealt with.
All clinical requests about your daughter must be sent to Lucy Omezi, Team Manager Enfield Community Rehabilitation Service– they are based at Park Avenue Bush Hill Park Enfield but my questions are why not the CEO in overall charge of the Trust? I have already written to that department requesting a CTR and also an adaption to Elizabeth’s bath as she has now gained enormous weight due to the drugs prescribed – take Risperidone and Olanzapine – they are notable for causing weight gain and diabetes. Not a word in response to my email.
These restrictions are intended to safeguard your right to complain or raise concerns about current aspects of your daughter’s care and for them to be managed appropriately whilst protecting our staff.Yes – that is what it is all about protecting your staff never mind the vulnerable patient or her family who are treated like dirt.
The vexatious management plan will be reviewed on a yearly basis by the Deputy Director of Nursing and Head of Patient Experience. – “whilst protecting our staff“.
The letter is signed by Amanda Pithouse, Chief Nurse and Mehdi Veisi Medical Director.
PREVIOUS VEXATIOUS COMPLAINANT THREAT FROM BEHMHTNHS PROFESSIONALS
Now this is something I can talk about. See extracts below of just some of my corrections to defamatory comments written when Elizabeth was abused under care provided in the community under a scheme called Moti Villa at the time I was a trainee Police Officer. I can prove everything as I thorough investigated.
DM’s opinion on “same issues” is contradictory, according to file records for example:Email from LS dated 18.05.2011 13:37 to (AA) cc TO, VB, SJ and AJ :“Dear AI absolutely agree with J.SB’s behaviour is unacceptable and impacting on our ability to provide appropriate care and treatment for EB. The position insofar as community services is concerned is quite intolerable. As you know we are also of the view that SB’s behaviour has a very detrimental effect on her daughter’s mental state. I have asked the clinical team to look into the matter again from a safeguarding perspective. We also really must put some boundaries around this woman. I had thought that when you V and I met a couple of weeks ago that we were agreed that legal advice would be sought regarding the vexatious complainant route? I cannot remember whether I passed on the info that DS (Commissioner) has forwarded the complaint he received to the NCL Cluster to be addressed so would expect them to be in touch shortly. He did mention an independent review being carried out and, after discussing the matter with P I advised him that we would be happy to comply if they commissioned another opinion. Regards L.
From : SJSent 18.05.2011 at 13.04 – cc LS, OT, VB “Potential vexatious litigant” …….A we are having quite of email and telephone traffic from Mrs SB, mother of EB. I was briefed by L who knows the family well and had to deal with years of complaints from her. I understand from V that the Trust was trying to progress this woman to be a vexatious litigant. V seemed to think it was the case that there was a piece of work that you were doing in ensuring that all previous complaints had indeed been exhaustively looked into. Can I ask where you are with this and when it will be completed as it does take a lot of management and clinical time to manage Mrs SB’s complaints. She is currently phoning the CEO. (“HER DAUGHTER IS ‘HAPPY’ WITH CARE SO IT WOULD BE VERY HELPFUL TO PROGRESS THIS THANKS”). From: VB to CD cc AA, LS re Ombudsman dated 10.08.2011 at 10.17“Hi C, I don’t know if A sent Mrs Bevis a copy of his report. He did the report because everyone wanted Mrs B to be classified as a vexatious complainant and I said “THIS COULDN’T BE DONE”: until someone went right through all her complaints and checked that they had all been answered and that she didn’t raise anything new. No – we haven’t received any letter from her to my knowledge. I was there when she phoned but haven’t seen anything since Regards V” . From CD sent 10.08.2011 at 10.12 to VB, LS and AA.“V, can I please have a copy of the last response that went to Mrs Bevis where she got a copy of A s report. I have asked for this a few times as has the Ombudsman. Without this having happened, we have not done all we can. Did you get the letter she said she dropped to the unit when she cancelled our meeting on 4th? From CD to VB cc AA, LS 10.08.2011 at 10.33“we have done that – the ‘new’ was the medication and that is now getting a second opinion. Can she please be written to advising of the outcome of the review held by Trust which is As very clear, report which could be shared with her. L informs me a referral for second opinion is going to Maudsley that should be shared, as it addresses her only new complaint. Not having responded perhaps leaves it incomplete. We did right thing offering appt. She declined now we have opportunity to be seen to wrap it up with sending report we were to discuss and confirmation we believe we have responded and are satisfied we are offering adequate service but are seeking second medication opinion. We can inform Ombudsman this is the case.
From OT To LS, AACc VB, SJ,JA Re: Potential Vexatious Litigant sent 18.05.2011 at 13.57I would favour an independent approach because it was ME, YES ME. I am still smarting from it, who felt the brunt of the last Ombudsman’s criticism – have you not read the letter yet it’s on file? Because I sought to intervene to assist others who quickly sought refuge in the phrase “we were not criticised it was the Management”. So when one talks about knowing the history as it were ……….make sure you get to know it all this time.
“VB concludes “Why I believe for it to be inappropriate for Mrs B to be labelled as a vexatious complainant is that although she undoubtedly complains prolifically and is also abusive and threatening at times, she keeps bringing up new issues which makes it impossible to label her as a vexatious complainant – O mentions the Ombudsman – should Mrs B go to the Ombudsman this would be her thoughts on the matter and the Trust would be highly criticised.”“L recently recommended that Mrs B should be given the name and contact details of one person who should the person with whom she should liaise over any problems to do with her daughter. I consider this to be a very good idea. Perhaps this person could have a PTS background or advised by that department? Just a thought as I remember that JF helped me a lot in the past in communicating with a lot of very troublesome complainants. I see that DS will no longer be commissioning a clinical review of EB’s care.”
CONCLUSION BY SBThe “same issues” as stated by DM are those that were never properly investigated by the Trust in the first place, because no one wanted to admit/take responsibility for what had happened. EB was left in a situation where she was forced to remain living at Moti Villa right next door to the neighbour who brought his friends into the Project that abused her and whom successfully appealed against his eviction. It was some time before EB was moved to another floor which was considered to be an adequate solution but EB was clearly unhappy at the scheme and SB wanted her moved to somewhere where she could feel safe and happy.Contrary to JS’s comments on her being “happy there”, the file note from
Dr HM stated in a file note 02.03.2011 when she visited with YOD- AMHP (13.09) “EB was very clear that she had stopped taking her medication because she wants to be readmitted to hospital “for some peace”. Tenant below her playing loud music throughout the night – her sleep disturbed. Last night she called Police about this matter. Reassured we would speak to staff about this. EB said it was not true she had taken cocaine but had said this because she was feeling cross with the home treatment team.” Originator – KL – SJOG (St John of God) support worker advised that EB “hates” where she is living. EB advised family she “did not want to go back to Moti Villa and be raped by lots of men”.
Section 23 Notification of Discharge by Nearest Relative
To the Managers of Thornford Park Hospital, Crookham Hill, Crookham Common, Thatcham, RG19 8ET.
Order for discharge under section 23 of the Mental Health Act 1983.
My name is **********and my address is ********** To the best of my knowledge and belief, I am the nearest relative (within the meaning of the Mental Health Act 1983) of Ms Elizabeth Bevis (DOB ********). I give you notice of my intention to discharge the person named above, and I order their discharge from detention in hospital.
The above is the standard discharge notification to a provider that a Nearest Relative can submit under the MH Act. Elizabeth has been at Elysium for two months. No Autism Assessment has been completed and I have been told this cannot be done under a PICU ward as it takes too long. They have also tried to say Elizabeth will not cooperate but then if communication is not good by professionals this could be the reason after all this is a mental health PICU not a specialist place where assessments can be undertaken for anything else than MH. Elizabeth has been sent out of area a fair distance away from home yet again and we have experienced difficulty in getting through on the telephone. Visits are intrusive and restrictive with one member of staff after another sitting listening to every word and writing notes. I have never come across quite such restrictions before under a PICU and advised the CQC inspector I spoke to today in this connection. The RC, Dr DM has already admitted a PICU is not the right environment for Elizabeth so in that case let’s see his response as I as NR am not happy with Elizabeth being in this facility. Family members could not get through on the phone recently and that is because Elizabeth was put in seclusion for about a week. It makes you wonder what on earth is going on behind closed doors and I found out today that the CQC take a very different approach since the pandemic which I believe can lead to patients being abused behind closed doors as if they only centre their investigations on a local basis who is watching what is going on fully behind closed doors. I spoke with CQC Inspector SG but in the absence of inspectors going onto wards I feel this leaves patients at huge risk. The providers that are private such as Cygnet, Elysium, Huntercombe etc. are making a fortune. Take Cygnet Godden Green for instance. They have made £28K over just 5 weeks for what exactly – for prescribing a drug (Paliperidone – Risperidone depot) previously found to be allergic to. Elizabeth said “I will never get better in here”. Attention needs to be turned to the CCGs who spend vast amounts of money that could be better spent on providing more in the local community
I am waiting for the rest of my FOI request because in a short space of time my Elizabeth has been sent to one PICU institution after another and placed in seclusion three times locally. The NHS has failed dismally to help her and just drug her, threatening if she does not wish to take the medication then they will inject her. The NHS have also bullied Elizabeth’s family, particularly the Nearest Relative who has dared to challenge them which in this case is me.
An Autism assessment has not been done in two months and when you think of the astronomic amount of money Elysium get then if they cannot do it, as has been admitted, then surely funding should have been transferred to another provider. It is also conflict of interest when an expensive provider such as Elysium is undertaking assessments on diagnosis themselves, whilst being paid enormous funds by the local area who they are closely in touch with. They are after all a PICU ward for mental health, not a specialist ward for LD/autism and at a recent important meeting, the response by the RC of Corridge Ward was, when questioned, certain procedures re the autism assessment had not been carried out and the assessment was therefore not completed properly. Their excuse was that Elizabeth would not cooperate but if there is a “language barrier” then what on earth is Elizabeth doing on a MH PICU ward in the first place, particularly when there is massive conflict of professional opinion and disagreement on diagnosis.
It is astonishing that North Central London CCG are wasting huge amounts of public money on providers who have failed to carry out proper assessments and all they are doing is polypharmacy drugging. When previous provider Huntercombe Roehampton stated Aspergers questions must be asked why was this ignored by the RC of Suffolk Ward Chase Farm Hospital, Dr HM? To think 3 doctors stated this yet the RC from Suffolk Ward chose to ignore.
At least Dr NS of Ruby Ward St Pancreas Hospital PICU was honest enough to say “we are guided by the local area” – well of course they are! It is all down to money and who is paying for their facility which is ENFIELD. The RCs of different PICU wards where Elizabeth has sent from the local area are desperately trying to back the doctor in charge of Suffolk Ward, Chase Farm Hospital Enfield who has stuck to her belief of Schizophrenia and EUPD yet failed to provide any scientific evidence whereas I have presented scientific evidence of the P450 liver enzyme tests that Elizbeth cannot metabolise the drugs. No wonder they do not work and this means she is subject to adverse reactions How many years have gone by and still no improvement only decline in Elizabeth’s condition. It is down to lack of communication and understanding by various mental health professionals but a PICU should only be used short term and now it is 2 months at Elysium and her detention under this private hospital more like a prison could go on forever judging by J Robson’s email below. Even some professionals appointed under Enfield concluded Aspergers/LD/complex PTSD and Anterior Region Medial Temporal Compromise. Then they try to state that the person concerned is psychotic plus has autism traits. I am not taken in by this at all and I believe the reason that Procyclidine was/is being introduced is to cover up serious things they have noticed in terms of Elizabeth’s physical health such as tardive dyskinesia. There is a whole report by Dr Bob Johnson, that is the most reliable and truthful of all, which clearly states “Complex PTSD” – this would be true considering the multiple abuse under Moti Villa. I would go one step further and state “Dissociation”. Dissociation is a coping mechanism which is certainly not understood at all at Elysium, where Elizabeth currently is right now. The strange accent and even some actions such as her stroking her hand whilst being interrogated by the RC even I as a mother can understand. Why is this seen as a mental illness rather than a coping mechanism maybe of some comfort to a deeply traumatised patient. What is so very wrong in this and if I as a mother and NR had been invited to any ward rounds I could have explained everything to the RC but at Elysium there is no interest in the family or any contribution from them and so none of their reports can be relied upon in terms of accuracy.
I have today found out that Elysium are trying to drug Elizabeth with several different drugs known as polyphamacy. I have never come across a hospital like this one where they blatently ignore the scientifically based P450 liver enzyme test results which have stated “poor/non metaboliser” What they are doing is dangerous and can result in adverse reactions. Also honest doctors like Dr Ann Blake Tracy state that when you change a drug then this can result in adverse behaviour and instability. So no wonder why she is on 1-1 and that they have tried to discourage contact with family and especially the NR and mother who has become knowledgeable about the drugs due to seeking advice from leading professors. Elizabeth has today stated she would like me to visit and I have witnesses to this effect. The response from these professionals employed by Elysium state that “I don’t have her permission to speak to you”. In other words they are hiding behind confidentiality. However Elizabeth has today said clearly she DOES give permission and DOES want her mother and NR to visit at the weekend along with her sister and a close friend.
So what happens when you submit a letter asking for discharge. I’ll tell you straight – two doctors and an entire team gang up backing one another. It requires two doctors opinions and of course they are going to stick together like glue because it is lucrative to hang on to someone like my daughter for a very long time whilst the local area of ENFIELD sit back and do absolutely nothing and of course pay extortionate amounts of money. The NHS clearly has money to burn/waste. As you can see from the email below from North Central London CCG NHS my one hope of any kind of justice was via a CTR (Community Treatment Review) I had never heard of this before and got to hear through other parents. Now my hopes have been dashed. It was Jeremy – Bethany’s Dad who told me about CTRs and this gave me such hope as it is by an independent panel but now I have no hope at all as nothing is ever done fairly under ENFIELD and instead of a CTR a CPA is being called Care Programme Approach. Elizabeth is being treated apallingly. She has asked for her care plan several times but tells me she has not been given it. So without a proper diagnosis Elizabeth is forever stuck under the MH when she needs to be with a different team who can communicate effectively. She clearly stated at the recent meeting she did not wish to be under the mental health team any more. She also said that the medication was not doing her any good but she would continue with the forced injections provided they were being reduced in dosage.
Elizabeth told me she is on 1-1 just like at Cygnet Godden Green. Imagine what that must be like to be followed everywhere by a member of staff. To think back in 2016 it took just 1 former experienced former nurse through Working to Recovery to take her on holiday to France and Spain, to Australia. Elizabeth had freedom. What she is getting right now is worse than any prison. In France Elizabeth went out shopping on her own and was treated like an adult. In Australia likewise plus on Isle of Lewis also not followed around like a baby. This is not right at all what is going on – how can you expect someone to behave like an adult and responsible unless you treat them with respect.
Elizabeth contacted me today but she has to go out in the garden to use her phone due to poor reception. Yesterday she spent much of her time in bed as she did not feel well. Of course when you switch medication it causes someone to become unstable and feel unwell. This would apply to anyone who is put on psychiatric drugs.
So I enquired what the new drugs were and it would appear that Dr DM of Corridge Ward is prescribing Olanzapine (Zyprexa) together with other drugs and lots of different pills are being presented to Elizabeth to take and she has been threatened that if she does not take them then she will be forcibly injected. What seems to be the Lead Nurses at Elysium is Faizer and Sean Francis. I have recently spoke to Sean Francis on the phone. The person who has overall control is Dr David Morton RC of Corridge Ward.
So this is the treatment that goes on under Elysium and other institutions – so if someone does not take the drugs they are pinned down and forcibly injected and I would describe this as torture not care and the reason I have been excluded from ward rounds is because no-one wishes to hear the truth that what they are doing is so very wrong but what is really wrong is a law that allows this to happen in the first place. Procyclidine if this is one of the pills being given on top of the Olanzapine is for Parkinsons so it would seem they have noticed some abnormality in Elizabeth as why else would this be prescribed? OR Is it to cover up sharp movements seen and to carry on drugging for convenience sake to the extent a patient does become very ill and injured? When someone develops TD (tardive dyskinesia) I have heard they need to be taken off the medication. A drug to cover up the side effects of another known to cause Diabetes, last prescribed at Royal Bethlem Nat Psychosis Unit Beckenham at maximum dosage mixed together with Quetiapine – drugs prescribed at 2 x BNF level at the National Psychosis Unit – a so called renowned hospital but I can prove otherwise. I have extensive records to show just what this hospital is all about and also the disturbing truth that Elizabeth was critically ill during the titration of Clozapine when she developed tachycardia (Mews Score 3) and not one single ECG machine working.
So Elizabeth told me she is being forced to take three tablets – three different drugs ie Olanzapine – Lorazepam prn and I believe the other is Procyclidine. Unfortunately Faizer has failed to return my call. Then when she is released/transferred elsewhere the RC of that ward will just continue with the drugging regime.
The Response below from J Robson is unsatisfactory as enough public money has been wasted. Elizabeth has not benefitted and is unhappy and has told friends she wants to come home. It was heartbreaking to know that she was in her room the other day, didn’t want to go out in the garden, didn’t want to know about the pigeons that visit her flat balcony. She didn’t want to speak to anyone. There was important family news to tell Elizabeth and a happy occasion to look forward to but yesterday she was well in the slightest bit and it is no wonder why when nurses such dish out a multitude of different drugs to patients meant for schizophrenia and fail to do a proper assessment because they simply cannot and Elizabeth should never have been sent to a PICU in the first place especially as I have notification from Huntercombe that mentions very clearly what condition Elizabeth has and it is NOT MENTAL ILLNESS. Just look at the response of J Robson when he is spending a fortune of public money because the NHS has failed dismally to provide anything decent. It is most disturbing to note “we need to work with Elysium” – well it is important to inform the public just how much money NORTH CENTRAL LONDON CCG is wasting and who else could be behind this enormous expenditure and there needs to be accountability for this when nothing of the right kind of care/facility is provided and then he states “we cannot undertake a CTR until Elysium carry out their autism assessment” . Then in that case I need to look at other avenues.
I will let you know the total figures of what has been spent by North Central London CCG in due course as this is of public interest.
In addition, further money is wasted on the legal process of Tribunals which is tremendous ordeal for my daughter who is autistic and has complex PTSD.
J Robson’s email below also states that an autism assessment is normally carried out in the community but if that is so how come I have tried so very hard to obtain this for Elizabeth who wanted to be transferred to another team as in her own words noone could understand her. Enfield is an area that tries to make out they have a good image whereby they treat disabled people with respect and fairly under the Equality Act. I would say the complete opposite is applicable.
So getting back to the letter of discharge – what happens next. You then have to wait for response from the Responsible Clinician which in this case is Dr DM. He will most probably get someone else to back him (another doctor) if he/she wishes to hold someone longer. So then when 2 Doctors agree on this tactic they issue a Barring Certificate and try to stop the NR in discharging the patient by writing an extremely negative report.
When they bar you that is when they can try to get rid of you as the Nearest Relative and take you to court which this has been done frequently and they state that you are being unreasonable when the opposite applies. The whole system is a joke and fails to protect vulnerable people like Elizabeth and their families. I have received confidential court papers sent on my work computer and have been harrassed with phone calls at work by AMHPs intent on detention under S3 in the past and have been given just 1 day to consent or else be displaced with another relative – in this case her father. It is all about threats and bullying and when you are not given appropriate notice then how can you organise a solicitor to back you. In 2014 I was taken to the CoP and had no solicitor to back me. However I have to praise this court highly for acting fairly. The court case followed another as Enfield Community Rehab Team deprived Clozapine for four days (NOT 2 as they state in the files). I kept a diary of it all. So I had to seek advice from leading professors – experts on the drugs and I then tried to obtain it from Harley Street privately as after 4 days Elizabeth was on the verge of withdrawal. Anyway the case was called “DEPRIVAL OF MEDICATION COMMUNICATION CARE”. Then Enfield Community Rehab Team tried to take me to CoP. Again no notice and I had no representation and they wanted to force her back to a care home because the LA was paying for this which was Phoenix House Stepping Stones in Northampton rated “good” by the CQC. However at this care home Elizabeth had no food at the weekend so how could this be rated good? It states in file note dated 18.03.14 from Phoenix House 218-220 Kettering Road Northampton “EB was rude to staff this evening- she was criticised to watch her foods as she had no food during the weekends. EB apologised about her behaviour” Also the drug Clozapine was declined when I tried to obtain it by offering to drive all the way to Northampton. An RMN told me it was more than his job was worth to give me the drugs so I then had to try to get it locally and I was told that “you will not get the drug anywhere in the local area”. It seemed like everyone was backing the team and my story “Get Her Back We Are Paying For That” describes the bullying we encountered. However the CoP were extremely fair and as she had full capacity they had to acknowledge Elizabeth wanted to be at home. If she had returned to the care home she would have been without food at the weekend.
Response from J Robson NHS NORTH CENTRAL LONDON CCG
Thank you for your E mail .
I tried calling you yesterday – but your phone was off .
I will be in contact with you at the end of next week with a confirmed date for a CPA
I have requested that an Autism assessment is completed some weeks ago by the Elysium.
We will be chasing them to advise on progress .
We cannot undertake a CTR until this has been carried out.
Has your daughter ever had an assessment at SLAM for Autism if not I am requesting this to be completed as well.
This is the usual route when people request this are not in a hospital setting .
I have asked that the CPA look at all options for step down whilst this is carried out .
Once we have a confirmed diagnosis , We will arrange an urgent CTR .
As you are aware , your daughter is under the Mental Health Act , so we need to work with Elysium until She is ready for step down From the FPICU facility .
I intend to ring you by Thursday Morning with a confirmed date .
Well he is talking about next Thursday morning so I will let you all know when in due course. No doubt this will be done via Microsoft Teams. I will also keep you informed as to whether I am barred and as to whether I will be included.
I enjoyed representing myself in court back in 2017. I have never done anything like this before but I liked preparing all the paperwork myself and making sure that the Judge had corrected versions of all documents submitted by the LA. The Royal Court of Justice wanted to meet Elizabeth who was excluded but it was then confirmed she had capacity.
Then what happens is a firm of solicitors can be appointed but in her case the representing firm told Elizabeth that her mother would lose in court and incur extensive costs and advised that she should appoint her sister as NR. I then had no choice but to back and her sister was delegated the role temporarily.
I was then presented with a Consent Order where the LA tried to get me pay £5000 in costs so I crossed out the paragraph I did not agree with ie the costs and sent it back. When I checked with RcJ noone went back to court and realised that I was the Nearest Relative I took back my role by presenting paperwork directly to the l Courts and Tribunal Service and a tribunal was called.
When someone like Elizabeth has been misdiagnosed and receiving the wrong treatment it is a never ending circle of Tribunals/displacements/threats etc – this is why we need a different system. How many people have to attend a Tribunal. The panel consists of a Judge, lay person and a doctor. If this fails on the part of the patient then the NR can step in but what is wrong is that the NR is often bullied and sometimes paperwork is drawn up unlawfully. I have a cheque to prove this as I challenged an illegal detention of 16 hours. Elizabeth received just £1 compensation which I have framed as souvenier. Now further compensation should be considered by ENFIELD as I as NR discovered that a second unlawful detention was made, this time for c5 days and I think there needs to be further settlement which, despite the Bostridge case, should surely come to more than just £1 bearing in mind lessons have not been learned.
On December 17, 2006, The New York Times began a series of front-page stories about documents obtained from Alaska lawyer Jim Gottstein, showing Eli Lilly had concealed that its top-selling drug caused diabetes and other life-shortening metabolic problems. The “Zyprexa Papers,” as they came to be known, also showed Eli Lilly was illegally promoting the use of Zyprexa on child…
Jim Gottstein grew up in Anchorage, Alaska where his father was a prominent businessman and his mother one of the most beloved women in town. Jim was on track to go into the family grocery and real estate empire, studying for a business degree at the University of Oregon when the law found him during his required Business Law class. He didn’t miss a question the entire class and realized law was a good fit. He managed to get into Harvard Law School as the only sky-diving applicant from Alaska that year.
After graduating from law school in 1978, Jim went into private practice in Anchorage with Robert M. Goldberg, primarily representing Alaska Native organizations. In 1982, he experienced a psychotic break due to sleep deprivation and was introduced first hand to the mental illness system. He was told he would be permanently mentally ill and to forget about his law career. Luckily, he escaped psychiatry and the experience led him to legal representation and other advocacy for people diagnosed with mental illness not as lucky as he. Jim opened his own law office in 1985, generally focused on business matters, and is now mostly retired from the private practice of law. In 2002, Jim founded the Law Project for Psychiatric Rights (PsychRights) to mount a strategic litigation campaign against forced psychiatric drugging and electroshock, and to inform the public about the counterproductive and harmful nature of the drugs and shock. Show More
I must say this looks a very interesting book and I must get this for my collection. I have plenty of interesting books and another one I like is Pharmageddon and Emotional Health by Dr Bob Johnson. I am going to get in contact with the Author of the Zyprexa Papers.
She has been prescribed various antipsychotics including Olanzapine, (Zyprexa) risperidone (to which she developed a rash) and aripiprazole, with no response.
‘verbal physiotherapy’ cures frontal ischaemia. My book, How Verbal Physiotherapy works, using social delight to defeat social harm, for all is now up on Smashwords. A paperback version of Verbal Physiotherapy book will be available. More to follow. I’ve just completed a key note speech to a conference in Copenhagen, which was well received.
This book I have amongst my book collection “How Verbal Physiotherapy Works” – perhaps Elizabeth should be having this as treatment instead of a cocktail of poisonous chemicals including I think a Parkinsons drug that she cannot metabolise proven by the P450 liver enzyme test results.
They make you feel like nothing. You are slagged off behind your back, written about in the most negative terms, defamatory comments consistently written in reports by Professionals who take over control and all stick together. They deprive contact with family and quality time spent with your relative. They are rude and put the phone down, then it takes a long time to get through on the phone. The mobile phone forever charging in the office or switched off and there is bad reception. In some cases the patient’s mobile phone can go missing, in other cases it is broken and noone tells you. When you are paying for a contract you wish to know if your relative still has the phone and not speak on a hospital phone which for all you know may be recorded. There is no feedback, no inclusion into ward round meetings – nothing. You are treated like rubbish as though you are invisible. Tribunals are geared to fail because doctors have written the most dreadful negative things and some cannot even get the date of birth right. For a patient to have to sit there listening putting their hand up to speak and being ignored is abuse. When it comes to the family they have little time allowed to speak unlike the professionals who are over represented in their opinion yet exclude the family from everything.
It has now been 2 months since Elizabeth was sent to Corridge Ward, Elysium Healthcare, Thornford Park, Thatcham Berks. This is paid for at enormous cost by Enfield CCG – the Mental Health Commissioners are Peppa Aubyn and Jon Robson. She seems to be deteriorating and we know she is not happy there. Nothing that has been provided so far has been right for Elizabeth. The idea to send someone so traumatised they cannot settle on the local acute ward far away from home has been tried now 8 times. What a huge waste of public money. No questions have been asked as to why care has so hopelessly failed.
The reason care has failed is because Psychiatric Intensive Care Unit are not the right environment for someone with sensory issues and do not specialise in Autism for which Elizabeth has been documented to have throughout the files. So it is down to environment, treatment and assessment but the treatment currently given is for Schizophrenia and no-one in the local team will budge on it despite the fact it has finally been admitted she has autism. No assessment will ever be done fairly under a mental health acute ward or PICU and Elysium have made disturbing admissions regarding this during my phone call yesterday.
I have received very sad text messages from Elizabeth that she is not happy, that she wishes to come home and to be discharged from hospital but I can imagine that this hospital will want to keep her for as long as possible whilst the local area of Enfield do nothing to review the fact she wishes to be with another team. Enfield CCG are paying for wrong facilities at enormous cost of no benefit to Elizbeth and damaging not only to her but her family.
Decisions are made by the Responsible Clinician who staff stick by him. Family have been excluded from the very beginning and not wanted to attend virtually at Ward Rounds. There has been liaison between the Responsible Clinician of Elysium and RC of the Suffolk Acute ward responsible for several seclusions lasting days on end and constant referrals out of area who firmly stick with the diagnosis of Schizophrenia. Being mental health they are not professionals on autism.
When you see someone going downhill as Elizabeth, deprived of family contact/quality time with family this has a knock-on effect and lack of support and bullying towards Elizabeth and family have led to physical ill-health. It takes away your appetite and you cannot sleep. Staff deny seclusion is punishment but both seclusion and exclusion we see as just that.
If you are not Nearest Relative they ignore you completely. If you are Nearest Relative you are also ignored and excluded and if you disagree with treatment you get signposted to a single member of staff to take your calls, to stop you from contacting others to find out information then they hide behind confidentiality by saying the patient does not wish you to know anything but this is done to protect themselves. Coercion and gaslighting is often used when a patient is isolated and staff then have huge influence. I would describe my life and that of Elizabeth as just an existence – there is no hope in sight, no communication whatsoever and in the current pandemic nothing is running efficiently which leads to further delay in outcome.
In such hospitals which are like prison patients are deprived of leave with family, fresh air and families are likewise punished by not being allowed even the smallest amount of time alone. They are deprived leave on the say so of the RC if the RC says that person is not well enough. This is often not the case. At Cambian Elizabeth was said not to be well enough to see family over Xmas but was brought down flanked by 2 nurses to the family home. Rest of family were allowed greater leave that was unescorted. So you are punished. You are treated like a criminal if you dare to disagree with the RC on treatment and diagnosis. Every single visit escorted and intrusive. One member of staff after another sitting there listening to your conversation with a note pad writing down, recording and observing everything said. It is apalling and degrading to be treated this way and never before have we come across such restrictive measures than that at Elysium Healthcare Thornford Park. When you complain staff point the finger of blame on the Responsible Clinician which in this case is Dr DM of Corridge Ward who makes all decisions. The staff and MDT (multi disciplinary team all back him to the hilt.
For about 4/5 days Elizabeth was put in seclusion. No-one knew and in seclusion phones are not allowed and that person cut off from the outside world but this must be terrifying for someone who has a Learning Disability or Autism.
Without proper assessment Elizabeth is stuck in a nightmare situation and Elysium admitted that the assessment had not been completed and is not likely to be finished. Unless such assessment is carried out independently there is no hope for Elizabeth. Yesterday when I spoke to Elysium about my concerns they said that an autism assessment took a very long time and admitted that it was not possible for them to carry out such assessment completely when PICU wards are only for short term but now two months have gone by and Elizabeth has been blamed for not cooperated with the assessment. The RC and previous doctors admit there are autism traits, no final decision has been made therefore a wrong diagnosis sticks. Lack of appropriate communication skills perhaps or bearing in mind treatment that Elizabeth cannot cope with too long an assessment perhaps whereas it could have been done in very short stages over the period of two months.
The local area of Enfield is paying for such care yet state it has nothing to do with them but I believe they have huge influence and have seen this in past file records. The current RC of Corridge Ward has been in touch with the RC Dr HM of Suffolk Ward and the RC of St Pancreas Hospital admitted that they were “guided” by the local area.
Failures of tribunals are based on dreadfully inaccurate reports full of error. Not even date of birth or past history correct and this ultimately results in long term incarceration. It is the local area of Enfield that you need to look to for answers but right now there is a wall of silence. We have experienced nothing but bullying – they have failed to work with the family. They have deprived a proper assessment into autism for many years and have refused to acknowledge complex PTSD and appropriate treatment, bearing in mind multiple abuse and neglect at scheme in the community Moti Villa. Instead professionals have turned their attention on the family particularly the Nearest Relative they have sought many times to displace through court after court at huge public expense.
Attempts of displacement have been made at County Court, CoP and RcJ , confidential court papers sent on the work computer and harrassment by social services to bully you into agreeing a S3. The local area of Enfield have tried to displace me with another family member and the last time tried to put their own representative in my place but I defended myself in court. Whilst full court details not given, only time of Hearing and name of Court displacement temporarily went ahead and a gloating social worker barged in on my visit to see Elizabeth at the acute ward Suffolk with a piece of paper “let’s face it your mother is not fit to be NR” or words to that effect and “London Borough of Enfield are now your NR”. However the Judge wanted to meet the NR and hear more from Elizabeth who was excluded like she was invisible. Elizabeth was then faced with having yet another capacity assessment independently and was found to have capacity. I then was forced to delegate my role and threatened with £5000 in costs.
So when a tribunal fails the Nearest Relative has an important role. The role as NR enables you to challenge the section and this is done through a hospital manager’s Hearing. At Cambian the Hospital Managers would not release paperwork so this did not go ahead. A tribunal was applied for and an independent Doctor’s Report and this was by Dr Bob Johnson who wrote accurately on everything. He said she had complex PTSD and needed intensive trauma therapy but this has never been given. The report was deprived to Elizabeth and ignored by all the team. Elizabeth might be better now if the team had listened.
The law is supposed to protect vulnerable people like Elizabeth under the MHA but it does not. The law does not look at other aspects apart from whether a doctor thinks the patient is fit for release on the basis of “risk to self or others”. It is never about risk to the patient or whether the patient is not getting better because the treatment does not work. The treatment is supposed to be reviewed after 3 months but this is not done fairly at all.
A SOAD doctor appointed by the CQC sounds good but this has not been our experience as all they do is to stick together with the RC who gets other doctors to back them but there is huge conflict of opinion as there are many who disagree but then they say that CURRENT diagnosis and drug treatment given is not working whatsoever. The current environment of PICU every RC has admitted is wrong however when the local area of ENFIELD do not come up with a solution then this is why someone like Elizabeth is left languishing on a ward that is not helping her get better and huge amounts of money are being wasted.
The worst thing about appealing against a section is that the entire team stick together and go out of their way to destroy you. What the RC does is to bar you then they get another doctor to back them which is easy to do. They they try to get rid of you for being “unreasonable” in asking for discharge. So then you as Nearest Relative have to appeal and you have to appoint a solicitor. At this level you get legal aid and when the hospital manager’s meeting fails then Tribunal is the next step. It is such an ordeal for my daughter to have to sit there listening to all their negative comments and for me as Nearest Relative. In fact it is heartbreaking. Elizabeth has full capacity. How many times do they have to put us through this as a family. How many times do I have to defend myself in court against professionals that write nastily and have the power of the law behind them and no-one challenges lies written in many cases.
At the RcJ during the hearing the AMHP presented the Judge with papers I had not seen. I was Litigant in Person and the Judge asked if I had seen the paperwork to which I replied no. I was then handed a copy of a negatively written interview two AMHPs had with Elizabeth when she was obviously not very well.
It is never ending and no solution in sight. All this has a devastating effect on my health and I was in intensive care in January – there has not been a scrap of help in my local area of Enfield.
I have now requested a CTR (Community Treatment Review) but when I phoned the CCG to find out when the meeting will be not one person phoned me back.
Elizabeth was adamant she did not wish to work with the MH team and their appointed care coordinator and neither did she wish to take the medication which all 5 doctors know she was previously found to be allergic to. Elizabeth said it makes her feel very ill after an injection and as a result of fear Elizabeth reacts when staff come towards her in defense. Then staff can say she needs longer detention.
If someone reacts to situations where staff can trigger their reactions down to fear detention can go on for a lifetime and that person drugged and forgotten about. The relative and their family are treated like dirt. For instance staff putting the phone down on you makes you think how can these members of staff can communicate with your relative.
I was told it would take 3 weeks for a CTR to be arranged. One week has gone by and no sign of any date for a CTR so I am posting this blog directly to Enfield CCG, I believe this is now part of North London CCG but in over one week surely the date of a CTR could be arranged.
The ideal solution would be for Elizabeth to move back locally and I am prepared to move in with her but I thought respite was going to be considered and I recently went to Norfolk where they have care farms. I thought I could stay with Elizabeth overnight whilst she spends her time at the care farm run by a MH professional. A care farm is the right environment not a prison. Prison is how I see Elysium, Cygnet, Huntercombe and acute wards and the longer someone is held there the more disabled they become and then of course it becomes more difficult to rehabilitate them in the community and the providers of such care and their shareholders reap the benefit of what the NHS is wasting in terms of public money.
Tonight I have had a call from Elizabeth’s sister very upset that she is not allowed to speak to her and being told by certain staff that Elizabeth does not want any contact with her family. The staff who are denying any contact are Registered Mental Health Nurses on the ward and this is causing a lot of upset within the family. We do not believe for one minute that Elizabeth does not wish to speak to any of us and that is because whilst contact has been denied to us, Elizabeth is being kept in seclusion for a reason. Staff just stick together who on earth would disbelieve anything they say but this is what goes on in these institutions when there is something to hide and when certain professionals wish to be protected. Hiding behind confidentiality is not the first time we have come across such actions. However as I told one RMN tonight the truth always comes out in the end. So the members of staff spoken to tonight have been William and Joel or Jo. They would not give any information stating that Elizabeth said she did not want any information shared but this is what they do when they have things to cover up.
Elizabeth is still in seclusion since the 30th September and we see this as the ultimate punishment. It is also punishment as we see it to be declined contact for the family too. We have never known a hospital to decline right of contact like this to her family ever before and the reason we do not believe that it is what Elizabeth wants is because of her recent text messages to family.
Article 8 of the Human Rights Act 1998. Before the Act, English law did not provide a statutory right to privacy. Article 8 is a qualified right (other rights being absolute or limited) and provides that: Everyone has the right to respect for his private and family life, his home, and his correspondence.
Article 8 protects your right to respect for your private life, your family life, your home and your correspondence (letters, telephone calls and emails, for example). What is meant by private life? You have the right to live your life privately without government interference.
Can A Public Authority Interfere with Your Article 8 Rights?
Other Useful Information
Examples of where there could be a breach of article 8 include: 1. searches and surveillance of your home 2. separation of family members including deportation or removal of immigrants 3. care or adoption orders for children and interference with your parental rights 4. compulsory medical treatment or testing 5. if you’re treated badly in a care home – if it’s severe enough this could also be a breach of article 3 6. your right to privacy at home and at work – for example, phone tapping, the monitoring of emails and int…
Article 3 protects you from:
torture (mental or physical)
inhuman or degrading treatment or punishment, and
deportation or extradition (being sent to another country to face criminal charges) if there is a real risk you will…
I will keep you all informed tomorrow as to whether Elizabeth is still in seclusion – this is a means of how they can stop contact because in seclusion staff can argue that a person cannot have a phone but we are increasingly concerned and it is good to question what is going on as you only have to read the files to see that professionals are trying to cover things up and are well aware that what they are doing is wrong.
So behind the provision of such “care” is my local area of Barnet Enfield and Haringey MH Trust and the CEO is Jinjer Kandola and the head of Commissioning is Peppa Aubyn and I have been speaking with Jon Robson of Enfield CCG who agrees that a CTR is necessary as how many times is the “care” of a PICU found to be totally wrong and in the community too under the community MH team when Elizabeth is said throughout the files to have Autism. The care she is getting right now on the MH ward therefore is totally wrong and seclusion is punishment and torture to someone who is forcibly drugged on drugs previously found to be allergic to against manufacturer’s instructions.
Just lately it has become impossible to get through to Elizabeth on her mobile phone. I had been receiving text messages, up until a few days ago, some of them quite disturbing then silence. I have contacted CQC in this respect. Whilst I have had virtually no contact, I have received email correspondence from RC Dr DM regarding my request to be included included at Ward Round via Microsoft Teams. The response I received was “no” .
“I do think that there are some features of autism present and we did a screening assessment which suggested the same. Over the next week our psychologist will be meeting with Elizabeth to undertake a more detailed assessment than the screening assessment allows.” But the Autism diagnosis has not been done correctly. Nothing has been concluded and in any case any assessment where such dispute should not be undertaken by a provider funded at enormous cost by the local area. As one doctor honestly admitted “we are guided by the local area of Enfield” That says it all.
The RC (Responsible Clinician) is continuing to prescribe Paliperidone 100mg (Risperidone Depot) despite 5 drugs charts that state allergic reaction plus other correspondence. Now I have been passed over to a single point of contact namely Robin Stapely within Elysium.
“We would not support any unescorted leave at the moment. Please can you liaise with the ward regarding visits as they have the diary etc and can make the necessary arrangements – Dr DM- Corridge Ward.” DATED 01.10.2020
I have spoken to ******and although she did not say no to you attending her ward round she was very unsettled at the suggestion. The main reason seems to be that she believes the medication is poisonous and that she does not need it. I think there is a real risk that if you attend ward round it could lead to ******* feeling more stressed and confused and I think that puts staff at potential risk. I am really keen to avoid this and I am aware that until this last week ******** had been making good progress.
It is most certainly not Elizabeth who does not want me at Ward Round.
Here are extracts of another email I have just received:
“I am the Head of Social work at Thornford Park Hospital and the Lead Safeguarding Officer.It has been agreed that I will be your main and only point of contact at the hospital moving forward to better support you and to add clarity with communication. May I therefore ask that you direct any communication to myself and request that you no longer contact the ward or other members of the care team. I have advised all members of the care team to forward any communication to myself to which I will respond accordingly.I have advised all members of the care team to forward any communication to myself to which I will respond accordingly.That said , ******is not currently consenting to anyone from the hospital sharing information with you so I would not be able to discuss any aspect of ******** care and treatment presently.” Dated 02.10.20 I have contradictory messages.
I was also advised to contact Trish Maher of the Advocacy People. org
DEPRIVAL OF CONTACT WITH ELIZABETH
This is the pattern of what they do when a team decide to ban you from contact. We have experienced this kind of thing before at other institutions. So they have allocated a named contact and he is not around to speak to you when you phone and then Staff are instructed not to speak or give out any information to myself, family or friends. Only Robin Stapely – Head of Social Work is allowed to speak. I had found out by chance that Elizabeth was in seclusion again. I wondered if this could possibly be anything to do with the fact that her takeaway went missing and that she reacted but in these institutions I know from other former patients that staff can even incite someone to behave in such a way to justify punishment. Very disturbingly yesterday I phoned to speak to the ward and was put through to the Lead Nurse, Clare Whiting, who refused to give any information on Elizabeth who I knew was in seclusion. Today I phoned but Elizabeth has no phone to answer. The Lead Nurse, Claire Whiting told me there were witnesses listening to my conversation with her. To do this, it shows they are trying desperately to protect one another so I also had someone around as witness to my call because previously, at Cygnet Godden Green, they tried to label me as aggressive/threatening but I had a witness to state otherwise. Cygnet Godden Green then threatened me with their solicitors D A C Beechcroft ref GEW who wrote following my verbal complaint regarding their reports full of error where not even date of birth was correct prepared for court purposes. How can anything be done fairly when doctors deliberately write in inaccurate and extremely negative terms with the purpose of making someone look entirely bad and regarding failure. It took me all night to alter not just Cygnet’s Reports but other incorrect file records too such as Social Circumstances and that of Elysium, whose RC based his belief’s on Elizabeth’s character after just one initial meeting without having had any contact with family as we have been excluded from the beginning like we do not exist. Instead he turned to the RC of the local area whose reports were equally inaccurate and who has failed to work together with the family. In fact on two occasions she had been unlawfully detained under the MHA. This shows how the MHA does not protect the weak and vulnerable. To think such reports go before a court as flawed evidence where decisions are made that affect everyone’s life with what can be devastating consequences.
I am currently waiting to hear from Cygnet Godden Green as I have apparently been accused of impersonating another mother and that I was threatening so they reported me to Police and D A C Beachcroft Solicitors who sent me a threatening letter but have refused to provide the evidence. There was a witness to the conversation who has made a written statement to the contrary. I would welcome being provided such evidence of my so called impersonation of another mother so that I can insert this on my blog then everyone can make judgement but for some strange reason there is a wall of silence from Cygnet. So Cygnet please provide me with the recording so that everyone can hear my impersonation of another mother.
It has been several days now since I last spoke to Elizabeth and whilst in seclusion Elysium have the excuse that they do not allow phones for safety reasons so they say. I found out today from Claire Whiting that Elizabeth has been in seclusion since 30th September – several days held prisoner in one room and deprived of contact with friends and family as punishment. There was mention of an incident on the ward but anything can be said of anyone in there and it is so hard to believe a word they say because of the enormous inaccuracy of what is written in their records. I have acquired records full of error many times before containing completely untrue comments where professionals rip not just the patient but their family to shreds behind your backs. If such an incident mentioned did occur then this disputes the fact that any progress whatsoever is being made with Elizabeth and that she is improving. Therefore the care being provided under Enfield is a complete and utter waste of public money. Elizabeth was not held in seclusion under Cygnet Godden Green where not one incident was recorded neither at St Pancreas Hospital Ruby Ward so what on earth is going wrong at Elysium Thornford Park since I have the most disturbing text messages and now all of a sudden they are depriving contact? Perhaps Robin Stapely would like to respond via my blog so that everyone can hear. I don’t know what Elysium’s seclusion policy is but I just obtained that of Enfield via my FOI request plus the cost of Cygnet which works out to c£28K for 5 weeks. Time and time again Suffolk Ward/Chase Farm Hospital Enfield have sent my daughter away out of area to similar PICU facilities completely the wrong environment as they do not have any decent facility or care provision locally. It is obvious that the treatment of Paliperidone depot is clearly NOT WORKING. The correct environment would be one of peace and tranquility with staff who have the skills to communicate effectively as with Autism someone has a different way of communicating that is not understood by MH professionals.
It was mentioned at a recent meeting Procyclidine was offered but declined by Elizabeth. This is for Parkinsons Disease so perhaps Elizabeth should have a full and thorough physical examination done. She is now a size 22 and this is because she has no freedom and is being held like a prisoner.
Elizabeth is described as being cold and aloof by the RC who does not know her. These highly qualified professionals do not appear to have communication skills for autism and LD and I can’t wait until the mandatory training comes into effect through the Oliver McGowan Foundation and this is why Elizabeth is not being treated fairly or humanely.
Since Elizabeth has been at Elysium I have experienced both good and bad communication with staff. Some have put the phone down and some have been very rude. I have thought that what hope is there when some of these professionals cannot even communicate with me nicely.
When I phoned recently to enquire about a takeaway I had ordered costing nearly £30 had been received by Elizabeth communication was not good initially. The Thai takeaway restaurant in Newbury insisted they had delivered it but Elizabeth never received it. Now I have a photo as evidence. What I did not know was that Elizabeth was in seclusion at the time as my order was on the 1st October and she was placed in seclusion on the 30th September – it’s been several days now that she has been held in seclusion and to think this is the care Enfield are providing and paying a fortune for.
I had a conversation this morning with Clare Whiting, Lead Nurse about seclusion being punishment which she strongly denied. It has become very clear that the care/treatment offered by Elysium is not working at all otherwise why would she be in seclusion all this time. She went on to say that Elizabeth was well looked after and received all her meals whilst in seclusion. That is of no consolation whatsoever when contact to/by family is clearly being deprived and seclusion is deprival of contact. When this happens it makes you think further afield and I am thinking back to Cambian when exactly the same thing regarding contact was experienced.
Elizabeth in my opinion is not being treated well by Elysium. They are by far the most restrictive institution of all regarding leave and access to family. Our visits have been intrusive because we are treated like criminals with every word recorded. No quality time alone has been allowed whilst Elysium exercise complete control over Elizabeth and this control can of course affect someone’s behaviour. Control is deprival of their human rights under Art 8 with the pretence that this is what the person wants ie does not want anything discussed when that person has written very contradictory comments. It is a means where staff try desperately attempt to shielf/protect themselves sticking together when they know full well they are giving a drug previously found to be allergic to and contraindicated. No lessons have been learned by the case of Oliver McGowan. Seclusion and deprival of contact is done through isolation/coercion and gaslighting. It is evil what is going on in the UK.
I have requested a CTR from the local area of Enfield. Care at Elysium Thornford Park is clearly not working and this whole situation is affecting the entire family when we have no contact. Under their care it must be questioned as to why no MRI or investigation into the PCOS or cyst in her head plus hormone issues have not looked into as this was discussed at a previous tribunal.
Care at Cygnet cost £28K for 5 weeks so now I am waiting for a FOI to see how much the rest of the care has cost since May 2020 when nothing whatsoever has been right for Elizabeth and every single RC including the current says a PICU is not the right environment. Enormous money has been wasted and this must surely be of public interest because in my local area funding is often deprived to voluntary organisations such as Carers Group, Disability Action who do a good job in the community so why is so much money being wasted? Why aren’t families listened to?
Elizabeth wants to be with another team so why is this being ignored when her needs are NOT BEING MET UNDER ENFIELD COMMUNITY REHAB – a MH team. That was clear from a recent meeting. There are many more doctors stating Autism, one stating brain damage, another two stating complex PTSD. What a waste of money when someone like Elizabeth is not getting the right care in the right environment and is becoming more and more traumatised.
You as a parent are left feeling hopeless. I have offered to move in to Elizabeth’s flat so she is not alone. I have offered to stay with her overnight so she can go to a care farm during the day in Norfolk for respite.
How comes an entire team at Elysium getting paid a lot of money from the local area cannot manage my daughter hence punishment of seclusion lasting days on end when a single former MH nurse could take Elizabeth into her own home, take her on holiday and then onto Australia. The wonderful organisation of Working to Recovery tried to help my daughter and Elizabeth came back well. My only regret was that she ever came back to my dreadful local area of Enfield where we as a family have received nothing but bullying and lack of support. If we are experiencing this then you can imagine what is going on to someone like Elizabeth held prisoner in the name of “care”. My only hope is that she will be moved out of this institution as soon as possible and that she receives a complete review of her treatment. Nothing fair will be accomplished under Elysium in terms of diagnosis assessment and the matter of family being denied. How can anything be done fairly when Elysium are receiving so much money from the local area to keep her like a prisoner when what is needed most of all is an assessment for the autism completely independently done and there are already two reports stating complex PTSD and poss LD.
When certain doctors do not budge on diagnosis preferring to ignore the bulk of doctors who disagree as well as manufacturer’s instructions/advice when evidence of allergy this can lead to terrible injury and death and Elysium are fully aware of this.
Having spoken to Jeremy, Bethany’s Dad there is a glimmer of hope that a CTR (I had never heard of before) might bring some changes for the better in order that the right kind of help is given rather than a secure prison style environment. I am pleased to hear that Bethany is getting such decent care through Merseycare when not so long ago she was held in seclusion and fed through a hatch. It makes you wonder why other areas cannot offer the same care as Merseycare or Working to Recovery and that is not to keep someone a prisoner, but treat them with dignity and respect and recognise that families are important and that someone like my daughter cannot stand a noisy environment and loves animals. Why can’t these so called highly qualified professionals understand this simple fact that what is being provide and what treatment they are giving is wrong.
ENFIELD AND BARNET MENTAL HEALTH TRUST (jinjer Kandola CEO) This area has consistently deprived anything decent in terms of care. My complaint through Pals has come to a standstill and have sent my daughter far away from home and family to a prison facility PICU for the third time in between seclusion after seclusion dished out in punishment by various doctors where she has no contact with her family for days on end where none of us can speak to anyone apart from currently Robin Stapely who is Lead Social Worker. This is the person who, according to his email, has control over what staff can say and what information can be divulged and has dictated to my family/myself we cannot phone the ward. He is therefore depriving contact in breach of Art 8 HRA. I was told today that daily reviews of Elizabeth’s seclusion are being given by the MDT of Elysium but this is of no consolation as, under Elysium’s care, Elizabeth seems to be deteriorating so scrutiny needs to come outside sources and not by ENFIELD AND ELYSIUM in order that a fair picture can be gained totally independent . In order to thoroughly investigate then the person to be interviewed should be Elizabeth without members of staff being present.
The effect of her care/treatment and seclusion is having a devastating on myself and others right now. Certainly without doubt this is affecting my physical health, having had a major operation in January following stroke. I can honestly say that it is lack of communication and the way I and other family members are being treated that is contributing detrimentally in this connection.
These professionals employed by organisations such as Elysium and Cygnet have their jobs to think of so that comes before the wellbeing of a vulnerable patient as you only have to look at the parents fighting for justice when their sons/daughters end up dead in such organisations to question the motives behind some of these professionals regardless of their high qualifications and whether or not they went to university.
It is 5.39 am and I like other parents/carers who have a son/daughter trapped in a system that fails consistently to provide the right solution are tortured by the fact that no-one cares to listen.
There is a glimmer of hope that my daughter who, not only is Autistic but said to have some learning disability, may be treated favourably by a CTR Review panel but if she is not I will continue to turn to social media and be outspoken in continuing to write about her treatment as the word “independent” means nothing to me whatsoever.
In all these years, I knew nothing about CTRs. It has been worth me going on to social media, being outspoken and coming into contact with other parents who, instead of organisations supposed to advise, have given me the most help and greatest advice I could ever wish for.
Tribunal after Tribunal after Tribunal (closed secret courts) I have called for openness and transparency into the secret courts that taxpayers fund and have written to the President of the Courts & Tribunal service recently.
A vulnerable person right now due to Covid is spared the ordeal of facing a panel in front of her firing questions, however this is now carried out on line and it is a great ordeal to have to listen to comments by professionals who fail to liaise with the family and get a true and accurate picture of everything and so their reports are highly inaccurate, written purposely to fail a tribunal. We have seen this time and time again. A panel consists of a Judge, a lay person and an independent doctor and then sometimes another independent Dr can be appointed to prepare a report by the vulnerable person’s solicitors. The current system is tremendously flawed. Tribunals are often conducted unfairly and do not take into account the full picture. When Doctor after Doctor writes in the most biased and negative terms who is a tribunal going to believe? The last person is the parent and carer of the vulnerable person who is of great value to providers of private facilities who wish to hold on to them as they are getting paid a fortune when a patient is sent out of area away far away from home and family due to failure of the local area (in this case is ENFIELD) to provide anything appropriate which includes decent facility or provide humane care and treatment.
Here are my ratings of everything that has been provided so far:
Bethlem Royal Hospital National Psychosis Unit:
A facility where vulnerable people who are treatment resistant are sent from all over the Country, hence few visitors because many parents cannot visit if too far away. The vulnerable person is therefore more vulnerable than ever and prescribed drugs, which in Elizabeth’s case are beyond BNF levels in fact according to the files 2 x bnf level. I have also heard reports of one case where a patient was bribed with money to try a drug so there is much experimentation going on in this institution that had a museum in the grounds. This raises lots of questions – why do Doctors prescribe at 2 x bnf levels? Why do they favour Clozapine when this is a highly dangerous drug? Why was there no ECG machines working when Elizabeth was gravely ill and emergency doctors were called out? – the extremely low mews score suggested “critical”. Why was I suddenly denied visiting rights to my daughter? Why was suddenly she denied outside leave? – well I can answer the two latter questions myself. Why was they had put her on Clozapine against her advance declaration. “its all about Clozapine here you should have done your research” so I was told. They deprived freedom and deprived visiting and failed to provide a visitor’s room when I turned up with Elizabeth’s cat yet they allowed a visit by a man who turned up drunk and bringing alcohol onto the ward and was escorted off the ward drunk.
My rating 0 out of 10 for this so called renowned facility.
Cambian St Teilo House S.Wales 1 out of 10
Set in a beautiful scenic area of S. Wales I naively hoped that in Wales the care would be better. My daughter’s first reaction was “Mum it is lovely here – there are sheep outside my window. Whoever thought of such wonderful care. However, these thoughts disappeared the longer she spent in this facility, the less hope. The Psychiatrist, also a GP, so I was told tried to influence Elizabeth against myself as a mother. Dr AW was advising she concentrated on the rest of the family according to Elizabeth’s sister. This meant that I as a mother was not given the same visiting rights as the rest of the family, being her father and grandparents. This also meant that the Doctor who had all the power could stop phone calls and dictate that there should only be supervised phone calls at a time when her mother could not ring. Thank God I had solicitors appointed as NR at the time. Working together they sought to displace me as NR which they failed to do at the Bethlem because whilst work court papers were forwarded on my work computer and I was bullied into accepting a S3 which I as NR did not agree with. They had achieved what they set out to – putting her on Clozapine but now they wanted to cut a mother out and displace her with her father and this is how they destroy and damage a family. My local area were involved and Todd and Co Solicitors were appointed by me to investigate and all investigations led back to ENFIELD COMMUNITY REHAB TEAM.
I would give a rating of 1 out of 10 for this facility as Elizabeth was at least surrounded by a nice area but at Xmas she was refused leave to come home as she was deemed to be supposedly too ill but yet a visit was permitted just prior to Xmas and flanked by two nurses they brought her home for just a few hours. The nurses who brought her down for a family visit were ordered not to leave in my case yet I have the files to prove that more leave was granted to the rest of the family who, whilst concerned about the decline of Elizabeth on contra indicated drugs of Clozapine/Metformine, never complained and so this is why they got greater benefits of leave by Dr AW who suddenly disappeared into thin air after maternity leave and following my phone call with Mr Asaria from Head Office based up the road from where I worked in Fulham Reach. By the way I found out that Metformine should only be prescribed by an Endocrinologist off label. I challenged Section 3 with a brilliant report written by Dr Bob Johnson who deserves the highest award for his honesty and achievements “complex PTSD requiring intensive trauma therapy” was the diagnosis which was given by him and we thoroughly agree after reading the files and noting all the serious incidents that have occurred under care.
Phoenix House Stepping Stones care home Northampton
A care home who at first were very nice and accommodating and allowed visits/leave but Elizabeth was quite ill and suffered severe anxiety and panic attacks leading to great concern. Rated “good” by CQC this care home was far from good. I requested home leave and Elizabeth sat in the garden with a winter’s coat on – her hands were like blocks of ice yet it was a hot sunny day. I became concerned for her physical health and wellbeing, especially because she did not seem to be happy. She later told me that she had been asked to choose who was the next of kin which she did not think was fair – to have to choose between her Mum and Dad and that is cruel abuse by so called professionals who must have been Registered MH nurses to have been allowed to work in this facility. Funded by my local area of Enfield, this care home was meant for life and it became clear that all of a sudden the leave first granted was not something they wished to continue, or contact. My instincts were proven correct when I eventually obtained the files. They realised that Elizabeth had been discharged not on a CTO and by stating who do you want as next of kin they really meant NR as their intention was to place Elizabeth on CTO and I was told “we are not speaking to you – you are not the next of kin Mr Bevis is”. They gave the game away and I immediately knew what they were up to. When Elizabeth came home and complained that she was being put under pressure to choose between Mum and Dad I asked if she was happy at the care home to which she replied “no”. I then asked if she would like to stay at home to which she replied “yes” so I said she could stay at home. Then followed the most bullying I have ever in my life encountered and after 4 days deprival of Clozapine (FOUR DAYS NOT TWO AS I KEPT A DIARY) hence my story of “Get Her Back We are Paying for That” which is about out treatment at the time when I tried everything to get the Clozapine when no doctors, no chemists would help in Enfield and a case of “Deprival of Medication – Community Care” Irwin Mitchell. When I refused to return her to the care home though offered to go and collect the drug, this resulted in CoP action brought about by social services who even tried to stop contact. I would like to praise highly the CoP who did not see in our favour otherwise Elizabeth would have been returned to a care home where she had no food at the weekend as documented in the files. My rating 0 out of 10 is because her life was put at risk by staff who are would you believe RMN’s “it is more than my job is worth to give you the drug” – the response to my asking if I could collect it in person.
A facility that looks like a prison and has a caged garden. Elizabeth’s carer was banned from visiting. Elizabeth was doing ok off all medication until they introduced Aripiprazole. I was so concerned that this was a facility that could have lasted years on end and where Elizabeth could become hopelessly trapped. The visits were not restricted to the point of other similar facilities with staff listening to every single word. But possessions were restricted and you were searched on arrival and had to wear alarms round your necks. We were at least allowed the dignity of a visitor’s room on the ward itself without a member of staff sitting there taking notes and the Section 2 did not increase to a Section 3 thankfully and Elizabeth was discharged back home. My main criticism is that they raised the drug Aripiprazole to double, making her unstable prior to being released back home. 2 out of ten is my mark as at least they let her go and we were allowed to visit without a member of staff standing over us.
Mays Cottage – care provided by Craegmoor part of the Priory Group. A house where Elizabeth was placed after an incident at home and following a two week stay at Premier Inn Enfield Island Village where Elizabeth was moved from room to room because of the fact no funding was put in place and the family had to pay to top up so Elizbeth could remain there. The Police Dr halved the drug Aripiprazole. Social services based at Park Ave came up with a permanent residence – a house occupied by a drug dealer who supplied Cannabis. Imagine staff arriving for work in the morning to the smell of Cannabis. Care was provided during the day only and there was a faulty lock due to shoddy repair work meaning Elizabeth was put at risk by their request for her to sleep on the settee until staff arrived in the morning. Safeguarding was carrying on against myself behind my back until luckily I found 2 copies of the minutes on the floor and I won the case because both Trust and Council were found to be in breach of their own Code of Conduct as Elizabeth had no advocate present and were forced to apologise by the Ombudsman – to think 9 professionals (3 from Craegmoor – part of the Priory Group ) sitting round a table inc. the GP with a Police minute taker and Elizabeth was unrepresented. I had no choice but to report everything to the Police myself.
2 out of 10 is my score.
Cygnet Beckton – supposed to be the Flagship of all Cygnets but we were never allowed a visit on the ward itself and given a tiny visitor’s room where a member of staff sat outside making notes after notes. Luckily the section did not go beyond section 2.
I would give 3 out of ten for this as I think looking back at least the RC did not raise the drugs too high and listened re the P450 liver enzyme test results “poor/non metaboliser”.
Trent Ward Edgware – I would give 4 out of 10 as they listened re the P450 Liver Enzyme test results and allowed Elizabeth to go out in the local area without being escorted.
Reservoir House Oakwood – a new permanent residence with no key ever provided – a form of Dol because if Elizabeth stayed out too late there would be noone to let her in as staff would be asleep. Also no furniture just a room where Elizabeth’s possessions was kept in bin liners. A persisting bed bug problem led to be contacting health and safety inspectors which led to her eviction thank God. A Death Plan had been made cutting out her family and for this reason I would give them 0 out of 10. The Death Plan asked how she would like to be buried or cremated and what music would she like played at her funeral. It was disgusting that Elizabeth had been given this to complete without any advocate present or consideration to her family. BY THE WAY ELIZABETH SAID SHE WANTS TO BE RESUSCITATED.
Huntercombe Roehampton (PICU) – sent Out of Area Dr HM of Suffolk Ward 3 out of ten – highly inaccurate report with not even date of birth correct failure to provide leading to ICO having to force them to provide as was needed for court purposes.
This facility I would rate low as Elizabeth was so drugged up she spent most of her time asleep and they drugged her on drugs previously found to be allergic to ie Risperidone. Her eyes were like slits and she had to lay down when I visited. Visiting was by appointment but at least unrestricted and more dignified but the drugging was the most I had seen apart from at Bethlam (BEDLAM). Nevertheless I would give them 3 out of ten for telling Elizabeth she had Aspergers and to have received that call whilst at work made me so happy as Elizabeth was happy.
In a short space of time spanning from June to date Elizabeth has been sent to three PICUS and held in seclusion by Chase Farm Hospital for up to 4 days at a time. Starting with:
Seclusion by Chase Farm Enfield
Ruby Ward St Pancreas Hospital – 0 out of ten.
The RC did not want me involved in any ward round and injected Elizabeth with a drug he knew to be allergic to – the equivalent of Risperidon Dr NS was RC
Seclusion by Chase Farm Enfield again
Cygnet Godden Green – 0 out of ten
“Requires Improvement” – virtually no contact for a long while – later found out phone broken but not advised. Only 1 person who communicated well. Depot injections continued despite RC RS knowing they were contra indicated and prev found allergic to.
Report writing the worst I have ever seen apart from Huntercombe where not even date of birth correct
Bullying the worst I have ever had with their solicitors threatening me and Police contacted when I dared to complain about their report writing geared to failing the tribunal.
After my blog a visit was accommodated and three hours leave granted for Elizabeth to come out unescorted.
I would praise Tom Higa for communicating nicely with me.
I would also state that Cygnet compensated for the broken phone.
5 weeks of restrictive 1 -1 15 minute watch care
My daughter’s comments “I will never get better in here”
Seclusion by Chase Farm yet again
Elysium Healthcare Thatcham Berkshire – My rating is pending whether they carry out a proper Assessment into Autism and if as I understood this was something they could not do then this would need referral to experts in the field.
Described as cold and aloof and lacking in insight with thought insertion by the RC Dr DM I do not have much good to say except this is the most restrictive care I have every come across. Also little understanding of Elizabeth as family excluded so far.
After quite a few weeks of incarceration, the only leave permitted is escorted with staff listening and writing down every word which is absolutely dreadful. I am not sure if garden leave is escorted too but know that Elizabeth is not taking the garden leave but stuck indoors and this is worrying as after spending much time like this at Cambian she suffered from Agoraphobia.
Whilst visiting has been allowed in their Board room off the ward itself, the visiting has been degrading as there is no dignity with staff listening to every single word.
Garden leave not granted despite being promised resulting in more degrading treatment to her family who have little contact but at least here unlike Cygnet Godden Green she is allowed her phone. Having said this reception is terrible and I do not like speaking on their phone and just lately the phone is constantly in the office charging which means it is difficult to get through to her. Elizabeth is getting no exercise which prompted me to complain and yet they have a gym facility.
She is getting no fresh air hardly and rarely goes out only allowed garden leave.
Not once have I or any family members had any feedback or been included in a ward round. You are treated like nothing. It is like you do not exist.
Not all staff have been polite. Phone put down on me a couple of days before.
An important report labels Elizabeth as cold and aloof. Elizabeth is missing animals and has adopted a pet spider she found in a cupboard. She talks often of the pigeons she misses in her flats.
I would describe this facility provided by Enfield CCG as the ultimate prison and the Doctor in charge has further labelled Elizabeth’s character as cold and aloof and that is because he chooses to ignore her family going by a doctor’s report from the local Ward Suffolk who lacks insight and failed to engage with family throughout sending her from one PICU to another, all of which have failed to provide anything of the right kind of environment she needs to be in to fee; well ie, fresh air, to be amongst animals.
I wish Elizabeth had never come back to Enfield. If I had never seen her again I would be happy knowing she was free rather than be incarcerated in a prison environment . Now as it stands we hardly see her anyway and when we do it is so very degrading.
So this is another private hospital, Elysium that costs around £700 per night and the RC does not recommend anything other than restricted incarceration yet cannot provide even a proper assessment whilst they desperately try to stick with the label Schizophrenia that we do not agree with.
My rating is also low for this reason that they cannot/have not provided an assessment on autism yet admit autism traits. There is so much conflict of opinion by other professionals and none of us in the family can accept this as an excuse and if a facility cannot assess they that assessment needs or rather should be done externally/independently as after all there is huge conflict of interest when facilities such as this are “guided” by the local area and it is after all being paid for by the local area. So therefore such hospitals back the local area in everything including treatment/labelling which is far from satisfactory and I am broadcasting this because this is how patients die when doctors do not listen and ignore the drugs charts.
Forced Paliperidone depot injections given and even more worrying attempts to add procyclidine for Parkinsons Disease but Elizabeth refused it. I believe this is given to hide the effects of the drug Paliperidone that can result in tardive dyskinesia and of course am aware that if a patient displays signs of tardive dyskinesia then the drug should be stopped. I obtain advice from leading professors on the drugs and that is how I have become knowledgeable and able to question what they are doing and why but some doctors when questioned look to the floor. It is as though they know what they are doing is wrong.
There is no way we as a family can accept this label as it hides the fact that in one local facility – supported housing – Elizabeth was terribly abused and has never got over it.
Xmas 2019 Elizabeth applied to Integrated Learning Disability and asked for my help in her application to them as she got nowhere every time she visited they had no record of her application. When finally the form was submitted a Dr HK refused to even see her stating her needs were being met by the MH team. This was far from true.
The majority of professionals have no idea how to communicate with someone who has autism/LD. Elizabeth wanted to be with a team who could communicate with her effectively, who understood her. Another reason why such facilities as PICU/acute wards are unsuitable is that they are very noisy and Elizabeth has sensory issues that make such noise unbearable.
It is a post code lottery and I have not come across people apart from a couple examples of support workers at a previous scheme who possess the unique communication skills but if everyone possessed such skills like Baroness Hollins then I would not be writing this blog and giving my ratings of facilities that one after the other have failed to provide both correct environment or tackled the underlying trauma which has been increased when someone is sent away from home and family time and time again and placed in such restrictive facilities where punishment is forced injections and seclusions and sanctions placed by doctors (who even admit a PICU is wrong environment) who have no understanding and do not wish to properly assess as it is more convenient to them to continue with current treatment and of course they do not wish to appear to be negligent which they are.
Until the court service/system of law is changed in the UK people like my daughter will continue to face lengthy incarceration leading to more and more desperate parents being outspoken on social media and facing in some cases bullying and threats like I have encountered. Tribunals and secret courts need to be open and transparent in my opinion and I have requested this to be looked into.
“Here at Elysium Healthcare we bring together a unique approach to the delivery of care where the individual is embedded in the heart of all aspects of care. Together, with all our stakeholders, we shape the care of today and the future.“
Once again Elizabeth has been sent out of area from Suffolk Ward. The local area of Enfield and Trust responsible is Barnet Enfield and Haringey Mental Health Trust and Enfield CCG has been funding this and previous private PICU placements as Elizabeth has failed to settle on Suffolk Ward where she has been held in seclusion for several days in a row. Whilst in seclusion Elizabeth has to stay in a small room but was allowed a fan – no contact with her family was permitted whilst the team looked for a bed far away from home.
Elizabeth is now at Elysium Healthcare Thornford Park, Crookham Hill, Thatcham, Berkshire, RG19 8ET. She is on Corridge Ward. This is what the facility looks like from the outside before you go to reception. Corridge Ward is to the right of these high fences. The RC is Dr DM who I have never met in person.
Enfield are lacking in facilities and only have 1 female ward under MH at Chase Farm Hospital, Enfield – the rest either all male or mixed. Attempts were made to put Elizabeth on the mixed ward but she reacted, being a multiple abuse victim under care who is fearful of men. I told them not to place her on the mixed ward but no-one listened. She then had to spend several days in the Section 136 suite as there were no beds on the female only acute ward Suffolk.
On Suffolk Ward on at least three occasions Elizabeth has spent much of her time in seclusion. The current treatment is Paliperidone (Risperidone depot) which is against Manufacturer’s advice as well as contra-indicated to her physical health. At least four doctors have chosen to ignore the drugs charts with a line put through it and know that she was previously found to be allergic to this drug, also that her diagnosis is in dispute. From the very beginning a Doctor said “Aspergers”. There has been conflict of opinion for so long now but some doctors choose to ignore this and because of the treatment they prescribe they wish to stick with Paranoid Schizophrenia to justify the current depot, which most certainly does not seem to be having any good effect whatsoever judging by what they have written.
Yesterday there was a very important meeting and Elizabeth had to sit through it and answer questions. The meeting went on for hours followed by yet another meeting. Meetings are something that Elizabeth finds an enormous ordeal as she has communication difficulty and her words are often twisted by professionals to make her look bad and professionals under MH do not seem to have understanding of Autism/LD.
During such meetings, a patient’s character is ripped to pieces by professionals who choose not to engage with the family or invite the family to join in for instance ward rounds. It is like we do not exist. At such meetings the behaviour of a patient is discussed indepth – it is like gaslighting and so cruel because without input from the family professionals write biased reports and do not know the background, especially when for the most part records are so erroneous. The system is not fit for purpose and vulnerable people not treated fairly at all.
Not once have I ever been invited to ward round. I was excluded by Dr NS of Ruby Ward.
I was excluded from ward round by Dr RS of Castle Ward Cygnet Godden Green.
Up until now I have been excluded from ward round at Corridge Ward, Elysium Healthcare, Thornage Park, Thatcham, Berkshire. It has been said though they are starting to have meetings via Microsoft Teams and that they would look into including me but it is a pity this was not offered in the first place in order to gain insight into my daughter’s background instead of labelling her as cold and aloof.
I have managed to obtain some extremely negatively written paperwork from Cygnet Godden Green. It would appear current treatment is not working otherwise why on earth would such Doctors write in such a negative manner and worse still, the records are contradictory in opinion ie, some saying no incidents and others listing a string of incidents on the ward. There is conflict of opinion between the Clinical Lead and RC on diagnosis and not even date of birth correct Why continue with treatment they know to be wrong and detrimental to Elizabeth’s health which does not seem to be working in the slightest bit. By far the worst hospital to write dreadful negative comments is Cygnet Godden Green and I have never read such errors in my life before and spent all night long correcting them. When I phoned, witnessed by a member of family, next thing I was threatened quite badly but this is currently under investigation and I am waiting to hear from solicitors so I cannot comment for now.
Presently, all of a sudden so it would seem a disturbing trend has emerged. I cannot visit often as Elizabeth has been sent out of area by Enfield but we are having trouble getting through on the phone. Tonight it has been a nightmare. The phone always appears to be charging in the office and then you have to phone the ward and wait to be put through. When I visited Elysium last it was very hot and sunny, unbearably hot in fact and Elizabeth was not allowed out in the sunshine because no leave was granted, apart from visits which took place in the Boardroom. I felt this was by far the most restrictive facility I have ever come across compared with all other institutions she has been sent to so far.
You expect on the first occasion in these private institutions that someone would not be allowed out and your visit be closely monitored but I have never seen anything like this before. During my time of visiting, one member of staff just came into the room, sat down opposite until I commented to the effect would she mind to sit outside. Surely a patient is entitled to some privacy during a visit. So the member of staff obliged and sat outside the room listening and writing notes all the time, then another member of staff took over, then a further member of staff so three members of staff all writing notes and recording every single word were involved.
When you arrive at Elysium first of all you have to report to reception then you have to deposit anything that appears on their restrictive list and place the items in a locker. You are not allowed to bring in mobile phones etc.
The visiting room at Elysium is a Board Room not right on the actual ward itself so you cannot come onto the ward like you could do in Huntercombe Roehampton and Cygnet Stevenage, just the building.
Because of distance I decided to stay overnight in the area and they did allow more than one visit but every one was very restricted and it was uncomfortable not to have privacy and decent time to spend with Elizabeth. On the last day I proposed to visit there was a mix-up and I never got to meet the RC, Dr DM, who was supposed to be back from holiday, as advised. There was a right muddle on the last day and it was touch and go I was even allowed to visit at all that was how bad it was. The message was not passed on to the Doctor that I wanted to see him or else he did not wish to see me perhaps and had suddenly left when I arrived. Again this meeting was held in the Board Room.
I have since visited, this time with Elizabeth’s sister and was promised garden leave but when we got there, nothing was mentioned in their records and I had brought a takeaway and we did not wish to sit in the board room. The member of staff had to go out of their way to ask permission but we were still not allowed in the garden. All we could do was sit outside and there was only two chairs so I told Elizabeth’s sister to take one and Elizabeth the other whilst I stood. To be fair staff did put themselves out to bring a chair for me to sit down but it was still upsetting to be treated this way when we had travelled a fair distance to visit and were looking forward to the garden leave. I have since discussed this with the Responsible Clinician and told him that I considered Elysium to have the most restrictive care I have ever come across. Dr DM then said to let him know when I wanted to visit next so that he would put something in place. However, I wrote to him to say that leave should be put on their records anyway, bearing in mind the length of time she had spent there and not just on the spur of the moment, and I questioned that surely leave should be increased by now.
I also told Dr DM of our problems getting through to Elizabeth on the phone and that the reception for mobile phones on the ward is not good. We were concerned to note that during our visit, her finger nails were yellow, she was not getting exercise and she had piled on a lot of weight but apparently they had a gym she had never been taken to and I was told this would be considered.
My biggest concern is that I am aware no proper assessment has been completed for autism yet they say Elizabeth was at fault here but if such an assessment was done in one go, no wonder why, as this would be too much for her.
Cygnet Godden Green’s conflicting reports did mention Autism but the reports were flawed with many errors and highly inaccurate and they contradicted themselves. It was astonishing that a private hospital could produce such flawed paperwork where they could not even agree on diagnosis, not even date of birth was correct.
Dr DM has also mentioned Autism and was questioned as to whether a certain procedure in assessment had been carried out which it hadn’t so the assessment is inconclusive and the label of “paranoid Schizophrenia” we all disagree with has stuck because the Autism assessment had been abandoned. so it would seem. To stick with Paranoid Schizophrenia is for convenience sake more than anything else as they are prescribing Paliperidone depot, a drug licensed for schizophrenia that Elizabeth was previously found to be allergic to.
Elysium’s facility is surrounded by high fences and looks like a prison. It is a secure facility and patients are not allowed out unescorted and I witnessed two members of staff escorting one patient for a short walk. It would seem that Elizabeth does not go out at all but has now has been granted garden leave. Perks like this are given as reward for good behaviour like in prison. If you behave you will have leave. If you do not behave you will be forcibly injected and thrown into the seclusion room.
At Cygnet Godden Green Elizabeth was followed everywhere by staff and was put on 1-1 and 15 minute watch. She could not even make a phone call in peace at least on HER phone which was only used about once and I visited out of concern as I am paying for a contract only to learn that the phone had been broken so no wonder why we hardly had contact from Elizabeth. Cygnet did reimburse the cost of a replacement.
Just lately we have had difficulty in getting through to Elizabeth on her phone at Elysium so tonight I phoned the ward 3 times. The first time I was told the phone was charging in the office. The second time a female nurse put the phone down on me prompting me to ring again. Staff offered to bring their phone but I said in each case I wanted to speak to Elizabeth on her phone. Three phone calls later and all I got to speak to Elizabeth was on their phone.
It is a pity in the UK we do not have the kind of care in Norway – the law is completely wrong in the UK and it is abusive to forcibly drug a patient, pinning them down and some are not even resisting. The law in the UK does not protect patients and the system needs complete review.
According to Norwegian law, forced drugging can only be used when, with “high probability, it can lead to recovery or significant improvement in the patient’s condition, or if the patient avoids a significant worsening of the disease.”
Thornford Park provides medium and low secure care to men who are detained under the Mental Health Act 1983. The service specialises in personalised assessment and recovery-based treatment pathways for men with complex care needs, histories of offending and for those who may have failed in previous placements.
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So despite the treatment of Paliperidone by the local Chase Farm Hospital RC there was felt need to send Elizabeth once again to a PICU unit away from home which is completely the wrong environment to recover and that is because there is nothing decent provided locally at Chase Farm Hospital.
From what I can see the owners are BC Partners and that they used to provide PICU care for men but now there is a women’s PICU unit where Elizabeth has been sent called Corridge Ward.
Elizabeth was transported by caged van for an approx 2 hr journey to Thatcham around about rush hr time. It is terrible the way vulnerable people with autism/LD are treated in this country and I believe that an ambulance would have been more humane – they clearly do not have a clue in the UK.
Ambulances, in place of ‘caged police car,’ to carry people in mental health crisis Updated Jan 09, 2019; Posted May 28, 2016 By Maxine Bernstein | The Oregonian/OregonLive.
The failure once again of Chase Farm Hospital to provide proper assessment has once again resulted in transfer of Elizabeth some distance away. I called into Chase Farm today to speak to Sean about this as I wanted to know who exactly is responsible for providing yet another PICU ward.
Different hospitals, different PICUs, different policies but all the wrong environment and very restrictive just like prison. At least she is allowed her phone in this one.
You have to arrange an appointment in advance and despite Covid there is an external visitors room or Board Room off the ward itself and you have to put possessions in lockers. You have to call at reception first and fill out a form on Covid before entry and wear a mask which is fair enough.
Once in the visitors room you wait until Elizabeth is brought out. I took the opportunity of staying a few days in the area as I have never been there before. I was hoping she would be allowed out but she wasnt as the RC (Responsible Clinician) Dr David Morton was away. I was told he would be back Tuesday but Tuesday was the day I was planning to go home so I extended my stay.
I can ‘t say much about Elysium at the moment apart from the appearance which looks just like prison from the outside.
No leave was granted apart from supervised visit and what was so awful and practically all these hospitals the same was that a member of staff sat there listening to every single word and I requested that the member of staff sat outside as it was so intrusive. They did this at Cygnet Beckton and Cambian and also Cygnet Sevenoaks. Then another member of staff would change over and then another member of staff, all writing notes in their book.
So I managed to visit several times but in this glorious weather patients are not allowed out which is a great pity
What could I do but visit, ask what she wanted and buy it. I went home on the 11th August. I missed the rush hr traffic so the journey back home was not bad.
My criticism is not towards Elysium who on the whole have dealt with me politely/professionally on the phone apart from a slight mix-up when there was contradiction as to whether I could visit on the last day and it was not possible to see any Dr as hoped.
My main criticism goes to my local area of Enfield (Barnet, Enfield and Haringey mental health Trust). From what I can see there are mainly male wards and one mixed and only 1 female.
Today Elizabeth saw a psychologist and I have written to the Consultant Psychiatrist (RC) Dr David Morton. Tribunal is planned shortly.
Where things are failing so badly is at local level. Whilst vast sums of public money spent on these kind of facilities which are wrong, the local area is lacking in facilities and care – Drs denying proper assessment and it is no wonder someone like Elizabeth does not get any better.
Elysium is supposed to be a facility that deal with cases where everything locally has failed – let’s hope they do what Enfield has failed. My only concern is that if discharged back to the local area of Enfield and on their acute ward because Enfield still have not got their act together for community care she could be held for weeks on end on Suffolk Ward and once again deteriorate. The treatment is not working effectively. Elizabeth has neither got correct treatment let alone diagnosis.
Ive no idea how long Elizabeth will be held here for but I am sure such facilities cost a lot of money per week up to £13K.
Since Sectioned on S2 on 5 June this is what Elizabeth has experienced under “care” of BEHMHTNHS.
Failed attempt at placing her on mixed ward at Chase Farm Hospital led to several days of seclusion without phone and family contact.
Then onto St Pancreas Hospital Ruby Ward where, guided by Chase Farm RC, forcibly injected with Paliperidone (Risperidone depot).
After several weeks, transferred back to Suffolk Ward traumatised and placed in seclusion c4 days, injected, then sent onto Cygnet Godden Green, Sevenoaks, where forcibly injected with Paliperidone. Elizabeth, who is terrified of needles, advised that she was so ill she lay in bed not able to move and felt very ill afterwards.
Family visit arranged but suddenly cancelled by Cygnet then allowed week after.
Visited ward, took phone as phone not charging to be repaired
Following 5 weeks at Cygnet Sevenoaks, Elizabeth back on Suffolk Ward. Nothing in place in the community and left on the acute ward Elizabeth reacted to situations resulting in further seclusion of several days and deprival of contact with family as punishment.
Visited ward to take her out for a few hours fresh air as 3 hrs leave allocated- did not know she was back in seclusion. All over weekend beautiful weather but kept in a seclusion room as punishment because of no decent facilities such as a sensory room. No staff would give any information and some refused to give their names.
Suggested taking her tol an outdoor adventure style holiday for a few days – no answer from RC no risk whatsoever as Elizabeth could barely walk day before and could not keep food down and kept crying so a little break in the fresh air might have been good for her. However never got any agreement from the RC and next thing, having turned up at the ward yesterday with some things for Elizabeth, was told she had been sent away again – this time to yet another PICU ward at Elysium, Thatcham, Reading.
This shows that care on offer for mental health patients and autism/LD who are all held together on same ward is totally inadequate and untherapeutic when it comes to dealing with someone so very traumatised.
Another former patient suggested a Sensory Room and I think it is about time more money was spent locally to avoid someone like Elizabeth being sent away time and time again from home.
My other suggestion is care farms – care farms are far more therapeutic than acute wards and Elizabeth likes animals – why is there no facility like this in Enfield or the surrounding area?
When you think how much money is wasted on private/public PICU settings that are wrong environment this is bad. Elizabeth came back even more traumatised and put back on the acute ward that is volatile and noisy it is apalling that there is no other option in Enfield.
Reading back on the files from the very beginning the child-like behaviour of my daughter was apparent dating back to 2008 and absolutely nothing after all this length of time has been done to tackle this apart from give drugs.
The Paliperidone depot is clearly not working as it is not stopping Elizabeth’s reactionary behaviour and in fact she has deteriorated. Why give a drug when it is of no benefit whatsoever and particularly when the RC herself has put a line through it previously to acknowledge she was allergic to it. It is contraindicated and against manufacturer’s instructions to prescribe it when it is contra-indicated.
Today I spoke to someone in the Pals Department and I recognised him from way back when Elizabeth went missing from the Day Hospital with an in patient who was on a criminal charge who should have been escorted everywhere.
So much has happened to my daughter under the care of BEHMHTNHS yet they refused to acknowledge the full report by Dr Bob Johnson of complex PTSD and fail to provide any effective treatment to help her. Having provided private care for four months I know it is possible and she was actually getting better but coming back home to this area of Enfield was the worse thing that could have happened and was not planned either.
The other thing I would point out is that the way you are spoken to by some members of staff is condescending and patronising. I’ll give you some examples of things said to me:
I am a mother I know how you feel
“Are you a professional?” – when it comes to the drugs. “no I am a mother” in other words nothing in their eyes however “I as a mother have turned to experts on the drugs and in research” In other words I can prove what i say.
I do not like the way staff wear name badges back to front and when you ask their names they become defensive.
I do not like the way staff lie when things go wrong or when there is noone who wants to speak to you on the phone.
Elsyium just like Cygnet have been given details of Elizabeth’s sister being NR.
It must have been planned this transfer as when I turned up she had gone.
Once again I am having to travel to visit an area I have never been to before, drive, book accommodation etc. Visiting times are not long and there is always the risk they will refuse at the last minute like they did at Cambian having driven several hours in the car and told to come back the next day.
In desperation I contacted Mencap because Elizabeth is being deprived a proper assessment and not treated fairly under Enfield despite a whole team at Huntercombe said “Aspergers – high spectrum” – this team say low intelligence and emotionally unstable personality disorder and schizophrenia which we totally disagree with. Many other doctors disagree also in the files and this is why a proper assessment needs to be done by a completely independent organisation such as Mencap – it is not independent to get another hospital paid for locally to back them with their diagnosis. An independent assessment should be completely independent.