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.