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.