Elizabeth has been living in a shared house for the past year.  The recent bed bug infestation has been the last straw as despite three fumigations there was still a problem. I saw a live bed bug crawling on Elizabeth’s pyjamas and she saw another couple of live bed bugs under her clock/under the “new” single bed that was finally brought into her room.   I had a look at this bed tonight.  Whilst the mattress seemed to be new the divan/headboard that had a burn mark or hole in it was far from new.  The headboard was ripped behind.   I had offered to buy her new bed and frame but no one supplied me with details of where the bug infested bed was bought from.

All weekend I’ve had Elizabeth to stay.  The cat likes to sleep at the end of her bed.  Animals unlike some people and can sense distress and be very comforting. Having a cat is very therapeutic for Elizabeth but she is not allowed any pets where she currently lives and it would be nice if this was the case in future.

It is not the fact that there was a bed bug infestation but the way things have been handled that led to my current complaints.   Social services team denied being told of the situation in the first instance and I had originally thought the nasty red marks on Elizabeth’s back to be an allergy caused by medication she previously found to be allergic to.   Elizabeth had been sleeping downstairs on a settee more than once which is far from comfortable or satisfactory.

A year has gone by since her moving to this scheme where there is no wardrobe or even chest of drawers and brought round plastic storage units which helped a little. I bought a hat stand then last year due to the clutter all over the floor we asked if we could purchase a wardrobe and chest of drawers which is the very basics that you should expect to be provided by such a scheme.   We were under the impression this was OK as Elizabeth’s sister had asked the previous care coordinator so we went ahead and ordered a nice wardrobe and a nice chest of drawers but we were told by the Manager of the scheme whose title is Director of Quality and Systems Registered Manager that:

“I have spoken to Mr M about the furniture due to be delivered and he has said in the strongest terms “no furniture should be delivered to his business premises” A brand new bed is being delivered for Elizabeth to sleep in from tonight and the room she has been allocated has a fitted wardrobe.  In addition, our maintenance person will be fitting a wardrobe in Elizabeth’s current room once she vacates it.” 

As a consequence we now have that furniture in our living room.

Recently Elizabeth was sleeping in a spare room for a while which had a small wardrobe and a space with a rail where she could hang her clothes but then she was ordered to move all her possessions again down to the bin vault due to the third fumigation and then immediately asked to move back into that room which smelt of chemicals and she could not find any bedding or her possessions so I went round to try to help and I was appalled she was ordered to go back into her original room that same day after fumigation and sleep on the old bug infested double mattress once again.  When I arrived I saw and photographed a live bug crawling on her pyjamas and I told Elizabeth to sleep in the other room on the single “new” mattress  as she was quite distressed about this.  Her possessions were all over the place and mostly downstairs in the bin vault.

On Friday, I had the following news from the Manager of Enfield Community Rehab  who had written to the care coordinator as follows:

Dear Paula

“Thank you so much for the clarification.  I really appreciate the team spirit that we share especially in times like these.   Having analysed and reflected on the on-going disputes and accusations that we continue to experience, it is with a heavy heart that we are today  issuing ……….. with 28 days notice to vacate Reservoir House.    This means that her last day at the project will be the 15th June 2018.    Let me know whether you intend to tell her on Monday or you prefer me to tell her.  I truly hope you will understand the rational behind our decision.”

Many thanks

 Lucy Ujamaa Director of Quality & Systems/Registered Manager

The email advising me of the above was written by the Manager of Enfield Community Rehab Team:

Dear …..

“The Care Coordinator visited this home today (18th May) with regards to the complaint you made concerning your daughter sleeping on the floor.  Your daughter was visited today and I also received written feedback from the provider of the home.  Your daughter informed staff the decision to sleep on the floor was made by you.  She had a perfectly made bed and a clean room which was available to her. Throughout the night she was encouraged to return back to her room but she refused.  The staff do not have powers to force her to return to the room especially when she had informed them she did not want to act against your decision” .

The true facts in respect of the above was that I had a call from Elizabeth to say she was spending the night again on the sofa as another live bug had been found on her “new” bed.   She said all her things had been washed and she could not find any bedding.  What I did was bring a quilt round, a pillow and blanket and when I got there to the scheme Elizabeth was going to sleep on the settee and I offered to make the bed up for her on the new mattress but she did not wish to return to her room because of the live bug she discovered the other day so I made the bed up on the floor with the quilt and pillow because the settee was hardly comfortable to lie on in the circumstances.   I also offered to take round to the scheme a brand new bed – a fold up bed that had never been used.  I was told that other rooms have been affected and that it was pointless to bring this round as this new furniture could also become infected.   When I arrived at the scheme  all Elizabeth’s possessions were in bin liners in the lounge and I took photographs of these.  The rest of the possessions were most probably in the bin vault again.   The sheets and bedding in the bin liners had been washed but were damp and it was a good job that I went round I felt sad as I know Elizabeth can be affected by upheaval and change and felt that things were in chaos and her health could be affected by lack of sleep.   She has scars all over her back and was given anti histamine tablets by her GP.

Email from PM – Care Coordinator:

“In response to the question you asked in regards to your daughter’s bed, I have discussed this with the Company Director and have been assured that when your daughter moved into the premises the bed was brand new.  As I mentioned in my previous email I checked the bed and do not have any issues in regards to the condition of the bed.  As agreed I will monitor the requested work on a weekly basis” 

I do not know which bed the care coordinator was talking about as she could well have been shown the single bed but in fact Elizabeth was told to get back in her original room and sleep on the bug infested double bed.

All of this and the fact that “business premises” are mentioned makes you wonder about other health and safety standards as who would ever complain as this is a scheme for very vulnerable people and as is mentioned in the email giving 28 days notice by the manager of the scheme “I really appreciate the team spirit that we share especially in times like these”.    

Here are the comments from the care coordinator PM to my younger daughter who is acting Nearest Relative:

“I can quite understand why your mother is no annoyed”      So this is a one sided comment but who would dare to show your true feelings in front of those in charge who are Directors or management of the social services Department for instance.    Suddenly the tone is defensive towards the “new” bed provided and room being suitable and having no issues and being satisfied but if this was a relative of anyone in the team this would be a very different matter.

Elizabeth is not going to get the fitted furniture.  Measurements have taken place but nothing provided.  If this had been provided from the start this would have been brilliant but no one cared to provided anything and the room was cluttered with possessions as there was nowhere to put them for a good year and this is very bad.

Thinking of the  double bed it did not look brand new at all.  I had requested receipt and details of purchase so I could go out and buy a brand new identical bed but this receipt was not forthcoming.  Only recently has this bed been thrown out in the garden, after the third fumigation.   The fourth fumigation is due on Thursday this week and thank God Elizabeth is going away to stay with other family members who live in a beautiful area. She was out with a friend of mine when ordered to return to the scheme by one of the managers to move all her possessions once again down to the bin vault only last week.

In my email of 10th May to the owner/manager of the scheme and care coordinator/manager of Social Services I stated that it was unacceptable to keep that bug infested bed I photographed, that this would not be allowed in any hotel –  just look at the photos I have previously posted.  I had also asked to see the Health & Safety Fire Risk Assessments which should be displayed on the noticeboard of the scheme along with insurance cover.  This was a brand new supported living scheme when Elizabeth moved in.  There is not one fire extinguisher on site or fire blanket in the kitchen.  I understand from Elizabeth that electrical appliances have only just been pat tested so maybe my concerns have highlighted all of these H&S issues but a year on from Elizabeth’s arrival at the placement, having not previously complained, it has all of a sudden been concluded that ongoing disputes and accusations to be the rationale behind the giving of 28 days notice and that is because I have highlighted what I see as health and safety issues.

It is wrong to accuse me of putting pressure on the staff in an email by Manager of Enfield Community Rehab. It is not the staff but the management who are having to properly look at health and safety for these vulnerable people.   Why is it acceptable for vulnerable people who are not even provided with a front door key to be treated  like second class citizens and ignore health and safety standards and if anything, I have quite rightly drawn this to people’s attention so that matters can be effectively improved.    “fire extinguishers are not required and could be more of a hazard if provided.”   WHY? The Health and Safety Inspector assessed the property on 14 May 2018 that fire extinguishers could be more of a hazard.”  why “staff in the home are feeling under tremendous pressure from you? and can no longer manage this?  –  No  that is not true as in fact I barely speak to the staff and have nothing against them whatsoever and in fact have overheard their conversations  –  “I’ve never worked at a place like this where not even the basics are provided”    “I feel like a gipsy moving from place to place” or words to this effect –   a brilliant care support worker that worked enormously long hours was sacked on the spot having completed nearly six months of employment.  This person was kind and this person I was truly impressed with and was extremely dedicated.

As for Elizabeth being happy –  how can anyone be happy living out of bin liners and suitcases for the past year and I have said nothing up until now.

It has got to the point where matters have got even worse and injury caused to my daughter and after a year of living in a place said to be “best interest” I have spoken my mind and I am sure that this scheme with the care provided – a sleep in support worker who stays 24 hrs costs a great deal of money, whereas at home we had nothing in terms of support and all that was needed was a support worker.  That would have cost a pittance.

Now my complaint has escalated to the Leader of Enfield Council, the Chief Executive of the Trust – Barnet Enfield & Haringey MH Trust, the Executive Director of Nursing, Quality and Governance, the Trust’s Senior Infection Control Nurse and this has all been advised to me in an email by Tracy Percilis.  I will keep you all informed.

This weekend Elizabeth came to stay with us.  I washed everything, including shoes and bags and put them on the line.

Today we have had a BBQ and I have come back to the scheme to take away some of Elizabeth’s possessions she is not using.

At home we have her furniture, a book case, a CD rack, brand new wardrobe and chest of drawers, TV.   I have discussed with Elizabeth the matter of the 28 days notice and shown her the email from the scheme manager.  When I showed her the part about “throughout the night she was encouraged to return back to her room but refused” Elizabeth said this was not true and also the fact that she had been happy because a shared house perhaps is not the right place for Elizabeth – a shared house has at times been quite stressful for Elizabeth and perhaps consideration could be given to a small flat/studio where she at least can have her wardrobe/chest of drawers – her own space might be better than a shared house.

Today we were talking about the CTO iand the whole situation.  Apparently Elizabeth was visited by the RC of Suffolk Ward together with someone else she described perfectly and apparently she was threatened that if she did not sign the CTO papers, she would end up back in hospital”   There was no Advocate present during this meeting.  It is appalling how vulnerable people are bullied by professionals.

I have just received the long awaited report from the Huntercombe Hospital Roehampton but this report does not even have the correct date of birth on it.   there are shocking inaccuracies/conflict in opinion as opposed to the emails from the psychiatrists involved in her “care”.  I remember taking a call from Elizabeth sounding so happy. “I have just been diagnosed with high spectrum Aspergers” –  I even thanked Huntercombe – I will feature more in my next blog.

It is not good that Elizabeth has been denied seeing a second opinion doctor due to dispute in diagnosis and I cannot understand why the legal department of Enfield Council is contacting me now about another consent form.   I have been forced to delegate my role as NR and have been threatened with enormous costs.   Meanwhile both Elizabeth and her sister were told “your mother is going to lose in court and get enormous costs” .   I presented a very good case as to why Enfield would not make a suitable nearest relative but I was happy to delegate the role and crossed out “The Respondent agrees to pay the Applicant’s costs”  – why should I be paying the Applicant’s costs when I was dragged to court and labelled “unreasonable” by the AMHP SM for not agreeing to a Section 3 when all the time Elizabeth was going downhill and now look at the current situation.

I am also curious to know why in the care plan it says NO TO SECTION 117 and would also like to know who these names are that are strangers on the care plan writing defamatory comments.

The public have a right to know how much things cost and I have discussed with Elizabeth about what kind of place she would like to move into when I have taken her to meet some of the people I know living in the community who have been given 1 bedroom flats or studio flats and in such a place she could have more space to put her furniture and keep things tidy – better than 1 room in a shared house where no one has even got a front door key which should be provided as it is degrading having to wait on the doorstep like a child waiting for staff to open the door.  This is in breach of the Equality Act.

It would be nice if Elizabeth could have the choice as to whom she could have as a support worker as she has started to settle down in the community but would still need some support especially if she was ever to return to work –  she could not do much at the moment and has to lie down as she gets very tired because of the drugs she is on and she has also been trying to get herself a therapist – a psychotherapist without anyone prompting her to do so.  All she needs is understanding but in a mental health scheme you cannot expect any understanding and the way Elizabeth communicates is different and she can be misinterpreted by the very people who are supposed to be involved in her care.

 

 

 

 

 

 

 

 

 

 

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Elizabeth handed me a form as she had enquired about voting but her form has been rejected because she needs to give proof of residence and has asked for a copy of her Tenancy Agreement but this has not been given to her and this is really bad so I am contacting all the councillors of the various parties tomorrow regarding this.

Tonight I have written to the Councillors in Elizabeth’s area (including Mr Doug Taylor – Leader of Enfield Council) and I hope assistance will be given to enable Elizabeth to vote.  I can scan documents across such as passport but Elizabeth does not have the facility to do so and so many people under the MH are excluded from voting even though they might like to take part and that is because they are stuck in prison like hospitals and are not given the right support and help they need to vote.

So we have a lot of leaflets put through our door for the elections on 3rd May.  There is not very much mentioned about improving social care in Labour’s Plan.  I would like the Councillors to help Elizabeth not just with the voting but to get a new bed or else move her somewhere else where she can at least have a front door key and not be bitten by bed bugs.

I’m now looking at the Conservatives literature – they talk about building homes that people need.  There are a few nice plans re affordable housing for sale and rent so I see – the two latter sites look good and are nearby.    When they talk about high quality care services and dignity in old age – what about dignity to those people like my daughter.  People under MH and LD are treated like objects and without dignity in my local area.  Tomorrow if I get a chance I am going to phone everyone of these Councillors and I would like a representative of each party to go and visit Elizabeth if possible or do something to help support her in order that she can vote.

 

Best interest in the eyes of the Professionals and court is a supported living scheme which is a house shared by two others and a support worker who is supposed to be there 24hrs a day. When Elizabeth first moved in there was no running water/toilet facility – things were not ready in time when she was suddenly discharged into the community and she was completely traumatised by her lengthy stay on various acute wards. It took her a while to settle down. This is the longest time Elizabeth has remained out in the community and is currently on a CTO but back on “medication” – an antipsychotic drug called Risperidone. The CTO Report/care plan full of errors and spelling mistakes stipulates she must live at the scheme and none of the family must take her away. The care coordinator was made aware of problems at the scheme of a health and safety nature some time ago but the manager of social services claimed she knew nothing of the fact Elizabeth had slept on the settee downstairs for three nights previously. Twice Elizabeth’s room had been fumigated but no one has removed the bed or mattress that was infested with bed bugs. The room has today been fumigated but still old bed and mattress remained. Elizabeth’s back is still covered in red bite marks which I originally thought to be an allergic reaction to Risperidone as she had to previously be taken off this drug due to allergy according to past files.

At my insistence Elizabeth was moved into the spare room where unlike her original room she at least had somewhere to hang her clothes. Most of her possessions have been placed in bin liners since she moved there going back to last year. She has had nowhere to hang her clothes or put away her possessions tidily, the very basics that you should expect from a scheme which the Local Authority provide which I expect costs a fair bit of money each week. So at Xmas when we saw still nothing had been provided we ordered a nice wardrobe and chest of drawers for Elizabeth. We asked if she could have this along with a small fridge of her own and received no objection. We did not just go out and buy this without asking first. This was discussed with the care coordinator at the time even mentioned about reimbursing the money to Elizabeth’s sister now NR as I have been forced to delegate my role threatened with huge costs by the Council if I dared to continue in court. I found the Court system unfair/biased and in favour of the Professionals based on me being “unreasonable” for disagreeing with doctor’s opinion on diagnosis and treatment. The social worker who took me to court was gloating that Enfield Council were now the NR but they were only appointed as ‘nominal’ NR as I turned up at the wrong court having been given the wrong details. As I did not agree with treatment or diagnosis I could not lie in court as there was such conflict of opinion by various other professionals however I was clearly at a disadvantage without Huntercombe’s Report on diagnosis that they still refuse to release despite the ICO’s involvement. So tonight I was most upset to hear that Elizabeth was back in her previous room and expected to sleep on a mattress with all dead bed bugs (and live ones!) which are clearly visible. She telephoned me as she could not find any bedding – her possessions were all over the place and some were in the bin vault outside. I felt perhaps she should have waited a few days before moving back into that room as it smelt of chemicals and even though the fumigators say it is OK after a few hours to return it is not very healthy to smell these chemicals but when I heard the old bed had not been removed I went round to see Elizabeth taking with me a quilt and pillow. All that remained in the new room was her fridge. The problem has not been solved. I saw a live bed bug crawling on Elizabeth as she had been lying on the old bed. I was very upset that the problem had still not been resolved after so long and that the old bed had not even been removed. This could well the source of the problem. I took a photo of this together with Elizabeth’s back and the state of the bed and mattress. I told Elizabeth to move back into the new room once again as the problem had not been solved.

Elizabeth’s sister phoned an out of hrs number of the Council but could not get through so instead emailed them. I managed to speak to them myself today and they promised I would be called back by someone from social services but I made a point of saying that not one single Professional in the team are speaking to me. It is like I am invisible. They will only communicate with Elizabeth’s sister I delegated my role as NR to.

The other upsetting thing was that Elizabeth told us a form had been given for her to sign and fill out. This form was a Death Plan. It is unbelievable that such a form should be given to someone young like Elizabeth who is only 31. In this form there are questions as to how she wants to be buried or does she want to be cremated and in one section Elizabeth writes that she does not know where she will be as if we move away and the rest of the family have moved away in the future then Elizabeth may well wish to be nearer her family one day. I thought such a form was premature and upsetting to be presented to someone like Elizabeth. I think it is very wrong. We are totally dismissed – the entire family like we do not exist in the presentation of such a form. I have asked others who know people in care or similar schemes and not one has had to sign a form like this.

We have been deluged with literature on forthcoming local elections. I’m looking at the Conservative campaign leaflet right now. There are three points mentioned – to re-invigorate Enfield Town – fill empty shops etc. To keep people safe – reopen Enfield Police Station and double numbers of council funded Police Offices. To keep Enfield tidy threatening prosecution for dropping litter and fly-tipping. Sadly no mention of improving care in the community or anything to do with supported living schemes – not a mention about mental health or anyone suffering from disability. We have a Labour run Local Government as it is and likewise they do not mention MH or seem to care as I had contacted the local MP and not even received an email back even though I went to an event and spoke personally with one of the assistants.

So tomorrow the family will contact Environmental Health although on one occasion I think Elizabeth’s sister said that she was dismissed by them as this not being serious enough for them to get involved and was advised to contact the Council instead. I shall see if I get this response myself tomorrow.

I informed the care support worker that there was still a problem at the scheme. Elizabeth settled down in the spare room and I noticed a light was left on in the old room so I phoned the scheme. Tonight there is a male support worker on duty so I told him about the light and during our conversation he mentioned that they never had a problem like this before and said that Elizabeth must have brought the bed bugs into the property. How would he know they never had a problem as he was not working at this scheme in the first instance. I did not like this one bit – we do not have a problem at our house and neither do the rest of the family so exactly what did he mean. Constantly I feel when things go wrong blame is put on solely family/Elizabeth and the only thing I would add is that no way on earth should that bed or mattress have been just left in the room and Elizabeth expected to go back and sleep on it the same day as the room has been fumigated. A new bed and a new mattress should have been provided well and truly before now as this has been going on for months.

The temperature in the house is very warm and that is why we bought the small fridge as food was going off quickly. I bought in a thermostat regulator for the radiator but this has not been fitted to my knowledge and we have had to put the nice furniture we bought Elizabeth ie wardrobe and chest of drawers in our living room as the owner and manager of the scheme refuse to have this and stated they had ordered furniture themselves but the question is …… where is it?

Anyway I will keep you all informed and as this is an important health and safety matter and all I can hope for is that the old bed is taken away once and for all. Perhaps the room will then have to be further fumigated but all of this could have been done much sooner causing less distress to Elizabeth who cannot find any of her possessions which is distressing to her and I often get calls asking where things are.

Our case is not good but I am in touch with very sad cases right now where total disregard is given to the vulnerable person and their families. I am going to be featuring a real life case of a very serious nature shortly.

The pictures above were taken on 1st May 2018 when Elizabeth texted me to say “I’m back in my old room now but ive lost all my sheets r u coming now”  This was at 9.00 pm so I drove over to the scheme to bring her some bedding.  When I got there I was  appalled.  The bed and mattress that was infested with bed bugs remained in her room she was expected to move back into. Nothing had been changed.  It seems like profit comes before care in Enfield  and they must be paying a lot for this scheme where Elizabeth has had to sleep on the floor and on the settee downstairs (4 times).  When I arrived at the scheme just the fridge remained that we bought her temporary room.  The old room had been fumigated that same day and I was not happy that Elizabeth was moved straight in there when you could smell the chemicals.  Elizabeth has not been happy and distressed at not being able to find her possessions.  I often get calls asking where things are and I am not there to help.

Today (2nd June) newly appointed Care Coordinator Paula McKevitt from Enfield Community Rehab (according to Elizabeth) asked her to return to the room that had been fumigated and she has to sleep on the mattress shown above in this appalling condition which I think is disgusting.  This care is under ENFIELD COUNCIL and the providers are a supported living scheme run by Simiks Baytree Care – (a private limited company) –  a business scheme who do not provide residents with a front door key and this of course restricts them as staff sleep through the night and there have been occasions when staff do not immediately open the front door and is takes time waiting outside to be let in.  Elizabeth’s back is full of scars with red bite marks still evident.  A live bed bug was on her pyjamas the other day.

I today phoned Environmental Health, Enfield and spoke to a lady called Tracy who said she would pass this on to David Dollemore – who I believe is an Environmental Health Inspector or in charge of the Department because I insisted they come and have a look.  Hopefully they will contact Elizabeth directly but I have also contacted all the Councillors as proof of residence was needed in order that she can vote in the local elections.  This proof has not been provided by the scheme and she should be entitled to have a copy of their Tenancy Agreement which is necessary for verification. She is now worried she is going to be fined but all of this hassle with her possessions all over the place is bound to have an effect on anyone and not make them feel great.

The manager of the scheme called Buki reassured her that everything was fine with the room and it is safe to return back to it and no one is helping take the possessions out of the bin vault outside in the garden back to her room.    I am appalled that anyone should be forced to sleep on a mattress and bed in this condition above.  It does not seem that anyone is taking any kind of responsibility.   Some of the photos show marks on Elizabeth’s skin where she has been badly bitten and yesterday there was a live bed bug on her pyjamas and I was there to witness this and a care support worker also witnessed a few days prior a live bed bug crawling on the old second hand mattress.

Paula McKevitt works for Enfield Community Rehab Team.  They are based at Park Avenue.  I have today received the following email from Manager Lucy Omezi who copied in Elizabeth’s sister, Manager of the scheme Lucy Ujamaa, Paula McKevitt and Dr Mirza:

“Dear ……                   Paula the care coordinator will be going to review the situation this week and will inform you of the update of the state of the flat.  I am sorry to hear your daughter is still suffering from the bed bug infestation.  This is now a priority and we will be working with the home to address the situation urgently. ”    

My email to Ms Omezi stated:  “no way should my daughter be sent back in a room that has just been fumigated so soon.”  Bed and mattress should have been replaced.  Already the wardrobe from the other room has been moved in and she has been told that her possessions need to be moved from downstairs back to her original room.  It must be acknowledged that Elizabeth has slept on the settee for three nights and on the floor one night.    How can anyone feel well in this situation.

I am glad to hear this is a priority but I do not want things rushed with her immediately going back to her old room if this room has once again been sprayed and that bed and mattress needs to be taken out.  This is common sense.   (since then it does not seem to be a priority at all as Elizabeth was told by her care coordinator to move back in immediately).

If my daughter does not have the basics such as wardrobe and chest of drawers to keep her possessions in and we spent money on all of this just look at the fuss regarding this – how can she keep possessions tidy and off the floor.   She is often phoning me in distress at the fact she cannot find her possessions.  This is a health and safety issue which should go to Environmental Health and you should see the state of my daughter’s back as a result of this.”   In my email I go on to talk about the CTO papers with wrong NR  that I amended correctly and the defamatory comments in the care plan written by a complete stranger yet signed by Dr Ahmed and Dr Mirza.   I’ve yet to hear who exactly is Jane Hobden?   Everything written in the files is designed to blacken someone’s character and the way this whole matter has been handled is of grave concern as this is being paid for by the Council and there does not seem to be any accountability and it is no wonder why Elizabeth is unhappy living there.   To think this is a place stated by professionals and endorsed by court proceedings in displacing me as NR to be of Best Interest.

I think Elizabeth could manage in a place of her own if she had a bit of direct payments but in two years + when I took her away from previous “care” provided in Northampton – a care home where she had no food at the weekend, it would seem there is a bottomless pit of money when it comes to court action against a parent such as myself who has dared to complain  about the “treatment” of my daughter.    Also Elizabeth has not seen a SOAD (second opinion doctor) and neither to date have Huntercombe provided her with their assessment report which states a form of autism whilst the local team stick with “paranoid schizophrenia”  – the whole system is failing to protect people like Elizabeth who are not being treated fairly by professionals.

 

 

 

 

 

NOTICE OF HEARING   (Community 17a CTO)

22 MARCH 2018  AT 10.30 AM  – Notice of Hearing sent from Mental health Tribunal Secretariat  Clerk to the Tribunal First Tier Tribunal (Mental Health)  PO Box 8793  5th Floor   LEICESTER   LE1 8BN

On 22nd March at 9.00 am  Elizabeth had to be at Chase Farm Hospital Enfield to see an independent doctor.  I gave her a lift to the hospital together with the Manager of her scheme.  Neither one of us were allowed to be with her for this assessment or the Tribunal itself despite requests and Elizabeth’s wishes which I have proof of we were excluded.

We sat waiting patiently in the hope that we could attend the Tribunal. Whilst waiting in the MHA Office upstairs I tried to hand in the corrected version of care plan and CTO Report to the MHA Manager (TM).  She responded stating that she would not accept the papers  – “you are not the Nearest Relative and we are not speaking to you –  I am not accepting these papers”  – words to this effect.  I took a picture of the name plate on her office door .  I was spotted doing this and she went ballistic and told me she would have me arrested.  A man then came out of his office.  I explained I had simply photographed the name plate on the door of the office – he could have even seen this if he wanted.  He responded to the effect I could have asked the names and he would have given them to me.   So I asked his name which was Michael Chalmers Head of Mental Heath Law.   I recognised his name instantly and I referred to his letter of apology of 12 July 2017 that the Trust had infringed Elizabeth’s liberty –  “we will be looking carefully at this incident to establish what went wrong and how we can prevent something like this happening again”.   “Please don’t hesitate to contact me if you have any questions or concerns or if you wish to discuss this matter with a member of your clinical team or with an advocate or solicitor”.   I said it was not good that Elizabeth was illegally detained. On one another occasion I complained that Elizabeth had her solicitors cancelled and knew nothing about it.  That is extremely bad.   The response I had was that this was with her consent but I want everyone to know that Elizabeth had not asked for her solicitors to be cancelled and knew nothing about it.  Mr Chalmers spoke of how hard he was working but I don’t see what this has got to do with illegal detention –  perhaps he meant that they were snowed under and that is why such errors occurred but I am only assuming this but in my opinion it is not good enough and I feel that some form of compensation should be given to Elizabeth in the circumstances.

The worse part is yet to come!!  I received shocking treatment.  I was asked to leave the MHA Office by the manager and refused as I had only taken a picture of the sign on the door and not of anyone else.  I was threatened with arrest and next thing a security guard in front of me asking me to leave.   I was impressed by his approach having once myself applied to work in this Profession and Police.  Unlike the Professionals employed by the Trust his approach was polite and decent so I left to go downstairs.  The Tribunal ended around mid-day – all this length of time taken up so many professionals – including representation by hospital manager, Judge, Psychiatrist RC, care coordinator and manager of the scheme who like me had to sit waiting outside.  There was also a solicitor representing Elizabeth.   This must have cost an absolute fortune for all these professionals to spend all morning attending and the taxpayer is paying huge amounts for such hearings.    It is also stressful for my daughter who does not like meetings and to be fired questions at surrounded by strangers.   She has been diagnosed as having autism high spectrum aspergers and even going to that hospital is stressful for her.   she originally did not wish to attend.   Afterwards she had given consent for her solicitor to discuss matters with me.    I had prviously sent amended care plan with correct NR on and CTO documents directly to the Tribunals Office.  The Nearest Relative (Elizabeth’s sister was away on holiday but applied for myself and other family member/close friend to be present but this was not allowed.   Quite frankly there is a lot of money to be made by independent doctors, solicitors, psychiatrists and others in extra funding by continuing a lucrative Order such as CTO.   This means regular meetings, progress reports, extra time spent on providing what is least wanted restrictive care, forced treatment and threats of recall which professionals like to use on vulnerable people.  Hence the reason I think they should be abolished along with DoLs

As I sat in the foyer waiting I was delighted to bump into someone I knew and had not seen for a long time.

Afterwards Elizabeth, myself and care support/Manager went into the canteen for coffee and Elizabeth had lunch/ .   There was a wonderful person who joined us at our table speaking of her role in peer support and how she started with a voluntary position and progressed to a paid position within the Trust.  She gave Elizabeth good advice and much to think about.   Afterwards I heard her ask the Manager of her scheme to help her get a job.   Even if it is a voluntary job just for 1 day a week it would be very good for Elizabeth and with the right kind of support she could regain her confidence.  Only time will tell if anyone gives her any help at all in this direction as only 1 person is working within that entire scheme so I heard.  In the community people like Elizabeth suffer from isolation and making friends this is not easy if you are not working, stuck in a mental health scheme where not even a front door key is provided and forced to live there.  There is nothing wrong with house or area but what is wrong is the way professionals treat people like Elizabeth and under a CTO they can really treat people badly and threaten them with recall  to hospital.   I knew that the result of the CTO Hearing would be unfavourable and this is because the report is deliberately written so she fails.  So I think CTO’s  are a waste of public money, are not being used fairly and it is wrong to threaten someone like Elizabeth.    I also think that Tribunals on displacement of  Nearest Relative for being “unreasonable” is extremely unfair.  There is no legal aid to back you in court and you are unrepresented.  The remit of the Judge is limited and does not include concerns on diagnosis being contradictory or treatment being harmful or ineffective.    The power is in the hands of unaccountable professionals (AMHPS) who prepare a case full of lies and errors.  They could not even get my address right and to be honest the court papers were so unprofessional that they should have been scrapped and the Hearing not allowed to go ahead.   I was treated extremely unfairly and bullied because when you are threatened with enormous costs you do not wish to lose your home and this is a fact that you are either forced to delegate or accept the Council’s Professional to be NR and then they exclude the patient and that involves a capacity assessment – yet more money wasted.   I presented a good case but was at huge disadvantage as when I asked for a report from Huntercombe this was refused.    How can I be unreasonable when an entire team have only recently diagnosed Elizabeth with high functioning Aspergers.

As for the Care Plan even if the care coordinator is not named as entering details as to diagnosis/dates and descriptions they are responsible for such a plan as they are aware of such comments that again are deliberately written to sabotage any chance of a  fair hearing and this is what has been done in Elizabeth’s case.    In addition to the enormous time taken up of those present at the Tribunal Hearings, substantial time had gone into preparing reports – CTO report is 11 pages long, full of typing errors stating he instead of she and other huge errors such as who the NR is.  What is frightening is that these records are held on the system Rio so that any new professionals look at these and go by them and no corrections are made and in some cases patients as well as their carers may be oblivious as to what is recorded behind their backs because a team of   “professionals” like to bully the weak, vulnerable and their families by way of CTOs and other sections   For example the CTO Report contains several threats of recall to hospital therein if someone does not engage with them.    This is why CTO’s should be abolished – waste of time and huge savings could be made from public money.  If Elizabeth was to behave in a manner seen to be risk to self/others she would simply be recalled anyway under Section 3 which can be dragged out for many many years in some cases.

I have files going way back of disturbing content on the latest CC who goes back to when Elizabeth was sent to Wales – Cambian.   It is sad and very wrong that the current system allows for such professionals to abuse vulnerable people, to write defamatory comments and to tear their families apart – such comments can be written about their families too for court purposes to make them look bad which I will feature on another occasion.

I suppose by not having a  front door key this is a means of deprival of liberty – they’ve got to be back by a certain time, otherwise they cannot get in as staff are asleep.   How degrading is this.

Deprival of liberty is abusive and so is to constantly test someone on their capacity which again is costly – should be done fairly and (not by any AMHPs) involved in their care who judging by file comments speak in the most dreadful terms behind someone’s back –  this is totally wrong – comments such as  “we must be more robust in that institutional care is the best option”  – But to the taxpayer this is the most expensive as incarceration of vulnerable people like Elizabeth carted off to private all for profit prison (hospitals) is of no benefit to someone like Elizabeth and people are dying too in such places.  They are just not getting the right care and the environment is totally wrong.   I am in touch with those who have lost their relatives and there needs to be proper investigations and recordings of such deaths as in these institutions so that there is accountability of the professionals involved and this is not just covered up –  my concerns are for those drugged up enormously and yet no one is questioning what some of the doctors are doing.

CTO Report: –  This lists details such as RC and Care Coordinator and Report prepared by Psychiatrist DR NABEEL AHMED ASSOCIATE SPECIALIST.    I am wondering if the report is in fact written by the care coordinator but is certainly signed by Dr Ahmed and current RC.

This report is dated 23 February 2018 and information is obtained from Rio electronic records and lists INCORRECTLY the Nearest Relative as Debbie Morgan (AMHP Manager – London Borough of Enfield).  CTO Report totally dismisses that of Huntercombe (high spectrum aspergers).  I have yet to obtain this report as they have refused to give it and this put me at a disadvantage in court last year.  The diagnosis which Barnet Enfield and Haringey MH Trust stick with is F20 Paranoid Schizophrenia (but where is the “Treatment Resistance?  –  this should not have been removed especially in light of the accurate lab test results on P450 liver enzyme that prove Elizabeth is a non metaboliser of psychiatric drugs.

Letter from RN of ….law  Re: Displacement of NR:

“The issue for the Court is whether you have acted “unreasonably” and whether you should be the Nearest Relative.  The Local Authority are clearly keen to bring matters to an end and seem happy for CB (Elizabeth’s Sister) to be NR.  This is clearly positive.  It is what Elizabeth wants and means that the LA do not fulfil that role.  I understand you are aggrieved by matters which have happened to your daughter but this is not for the Court to decide.  The Court has a limited remit.” 

Letter from CB – Delegated NR who appealed against CTO dated 14 March 2018  to TSMH Case Progression@hmcts.gsi.gov.uk:

“I attach Tribunal Appeal on behalf of my sister as NR.  On the CTO papers it is recorded that Debbie Morgan is NR when in fact it is myself.  These papers should be amended and I will contact MA (CC) regarding this.   There are some terrible things written about my sister in the care plan which are totally untrue and have been reported to the Police. A CTO is like a form of punishment and restricting for my sister as she has no front door key and forced to live where she is but this should not be for a long time as both myself and my Dad live in other areas. She may like to move nearer to one of us.

My sister is an adult who should have a front door key.  It is degrading not having a front door key and nowhere to hang her clothes so we bought furniture and this is not allowed.  I therefore back my sister in appealing against the CTO.  It will not do her any good to be taken back on a ward – she may like to live elsewhere and should not be restricted in moving if she wants to.    Please ensure you have my name as NR and not Debbie Morgan as this is what was agreed by the Council.  My mother was forced to give up her role as NR as she was threatened with huge costs.  Is it possible for the Tribunal to be postponed? – I’m only away for 1 week. If not then Elizabeth should be entitled to have someone from her family in accordance with her wishes and I have proof this is what she wants.  Her previous solicitor put pressure on Elizabeth to say otherwise and sign some papers.”

The Nearest Relatives comments above have been completely ignored.

DISTURBING CONTENT OF CTO REPORT PREPARED BY DR NABEEL AHMED ASSOCIATE SPECIALIST RECOMMENDING RENEWAL OF CTO.

Past History is wrong.  I have re-typed the whole report from scratch.   The most disturbing thing apart from the negative comments are the Treatment Plan and Conditions.

  • To cooperate with Community MH Team/Care Worker at Supported Accommodation to administer and supervise her oral MH medication on a daily basis.
  • Dose and frequency and duration of medication to be reviewed by RC.
  • To reside at her accommodation or specified place by HIS CC.
  • To see a SOAD at a place agreed if/when needed (as far as I know this has not been done)
  • CPA (Care Programme Approach) meeting to be attended prior to CTO end date.
  • To allow access to CC, RC and others staff into her property to assess her mental health sate and compliance with prescribed medication

THREATS:

  • If she refuses medication CC to arrange appointment with psychiatrist at earliest opportunity and urgent CPA to discuss non-compliance, risk to self/others and RECALL TO CHASE FARM MENTAL HEALTH UNIT AT CHASE FARM HOSPITAL OR ANY IDENTIFIED HOSPITAL FOR ASSESSMENT AND TRATMENT.
  • SHE IS WILLING TO COMPLY TO PREVENT BEING READMITTED.
  • If non- attendance of second appointment the care coordinator MA to arrange urgent CPA review meeting to discuss non compliance.
  • CTO provides a framework for engagement, continuity and has ensured attendance post discharge which has enabled discussions about treatment and negotiation.  Should this not work there will be option of recall should severity of the situation necessitate.

 

LIES:  – TOO MANY TO MENTION – that is why I have accurately gone through file records and corrected the whole report.  The report is unprofessionally written and mentions he instead of she on numerous occasions.   It is written by someone who just like the AMHP who produced the RcJ Witness Statements last year records erroneously:  names are spelt wrongly, information fabricated/designed deliberately to make the vulnerable person look dreadful.  Beyond doubt a CTO is punishment of the State when you get professionals such as this threatening constantly to recall if you don’t do what they say -I reckon people who go into such a profession love the power to bully someone vulnerable like my daughter and on the whole get away with it.  CTOS are virtually impossible to get off but who cares whilst extra money is being made.   The law is on their side and there is NO ACCOUNTABILITY and should be.   It is truly sad to read such a report stating IQ to be low when Huntercombe and even the newly qualified psychologist at her scheme state IQ to be the opposite – high spectrum Aspergers yet Elizabeth is in a mental health scheme where only 1 person in their entire schemes has a job and is working.  Elizabeth is not being treated fairly at all.   Elizabeth had to go into her Tribunal without anyone familiar being present and had to answer questions to these people like a criminal trial.     We had accompanied Elizabeth upstairs to the Mental Health Act Office.

The time was 9.00 am and Elizabeth had to attend to meet an “independent doctor” first before going into the Tribunal.  She seemed quite calm about the whole thing.  Numerous requests had been made by her NR to the Tribunal’s Office for someone to go in to the Tribunal with her and constantly it was evident that they did not want any family members or even a close friend of the family to be present.  I have a text message from Elizabeth asking me to be present even though I am no longer the nearest relative.

I had corrected the CTO papers along with a Care Plan and Review that contains lies and defamatory comments.  This care plan and review was also dated 28 February 2018.  Consent Recorded Date 03.08.2017  that she does not want information shared with her mother and has agreed for information to be shared with professionals.    Well I luckily have had all the information that Elizabeth has shared with me and just as well because someone needs to be responsible for the pack of lies and defamatory comments therein.

The only person named on this is the care coordinator who is based at Enfield Community Rehab Team who are based at 65c Park Avenue  Enfield EN1 2HL – the same team who deprived Clozapine to force return Elizabeth to care at Phoenix House in 2014.

I have already spoken to one of the people who made entries on the care plan under  Diagnosis –  This person – Tina Keeling knew nothing about the entries and I genuinely believed her.

The most disturbing lies are the following:

  • Mixed and other personality disorders     12 June 2017  Sangeetha Kalimuthu
  • Mental and behavioural disorder due to use of alcohol dependence syndrome – Jane Hobden – 01.09.2017
  • Mental and behavioural disorders due to multiple drug use and use of other psychoactive substances /harmful use  –  01.09.2017
  • Three entries of history of self-harm by Jane Hobden  01 June 2017 and 15 Feb 2017.
  • Problems related to alleged sexual abuse of child by person outside primary support group

It is quite possible that these people have been used in such a way they are oblivious to having made such comments as recorded in the care plan.

SO PERHAPS THE MANAGER OF ENFIELD COMMUNITY REHAB WOULD LIKE TO EXPLAIN WHY SUCH LIES APPEAR IN THE CARE PLAN AND WHY RECORDS HAVE NOT BEEN AMENDED TO SHOW CORRECT NEAREST RELATIVE.  THAT MANAGER IS BASED AT 65C PARK AVENUE ENFIELD LONDON EN1 2HL.  A FULL ENQUIRY NEEDS TO BE DONE  – I would like such an enquiry to be open and honest as the law is being abused so that CTO’s Tribunals fail on account of what is written in reports by certain professionals who deliberately exaggerate or fabricate the truth for which they surely should be held responsible for.

Re: Letter dated 19th September to Elizabeth from Barnet Enfield & Haringey NHS Trust Mental Health Act Office Chase Farm Hospital:

The letter advises CTO expires on 17 March 2018 explaining it will be rescinded if no longer thought to be necessary OR your RC will recall to hospital for treatment for up to 72 hrs if they feel your health or safety or safety of others are at risk.  Re-assessment and one possible outcome is revocation of the CTO which would make you liable to be detained in hospital for treatment for up to 6 months.  If your RC does decide to recall you to hospital you will be provided with a written notice of recall.  If you do not return to hospital voluntarily once you have received notice of recall staff have the power to return you to hospital.

The Trust has  a duty to give you certain information under these circumstances. (a leaflet enclosed) – what it means for you and right of appeal. Offering contact with an Independent MH Advocate – understanding and exercising your rights, making your point of view heard. 

Extracts from recent email sent to the RC and AMHP enclosing the amended care plan with correct file entries from professionals and the amended CTO papers with the correct Nearest Relative.

Dear Dr M (RC) and MA (CC) ENFIELD COMMUNITY REHAB TEAM

Please ensure that the defamatory comments written about my daughter are corrected for the forthcoming Tribunal.  No she never had a drug/alcohol dependency problem.  No she never self-harmed.  No she has never sexually abused a child re serious allegations.     I look forward to seeing those amendments and especially that CB is down as NEAREST RELATIVE.

Please ensure that Elizabeth has the white tablets of Risperidon and not the coloured dye ones as it is recorded in file records allergy.

 I have been through all the file records to ensure accuracy.

 I would like to know who Jane Hobden is and what is her position within Barnet Enfield & Haringey MH Trust.   I would like to speak to her as Tina Keeling knew nothing of her “entries” on the care plan.

 I would also like to know about Why DM (AMHP) is put down on the CTO papers as Nearest Relative when it is CB?

 In addition I would like to know why you have put No to Section 117 and not given a reason.

 A CTO should not be reason to threaten vulnerable people like my daughter and I want them scrapped. 

Cygnet and Huntercombe are very unsuitable environments and it was because of Cygnet Stevenage that she came home unstable as they raised the Aripiprazole to double just before release

 Kind regards

 

SB

I will keep you all informed.

 

These comments below are 100% true and this blog has been discussed with Elizabeth before posting. Elizabeth wants something done about the Mental Health Act and so do I and the treatment of herself and so many who are denied choices in life and dignity along with basic human rights in the UK.  CTO’s Dols- In-house Assessments should be abolished in favour of decent care.

28.02.2018 – care plan

Under diagnosis:

7 entries of “paranoid schizophrenia all around the time when Elizabeth was dreadfully abused under Moti Villa.   All entered by Tina Keeling – someone new – who is she ???

On 15 February 2017, 01 January (two entries) self- harm dated 01 January 2017 all stating self harm which is completely untrue – all entered by Jane Hobden who is a complete stranger to the case – who is she??? 

Jane also goes on to say Elizabeth has mental and behavioural disorders due to use of alcohol/dependence syndrome.   WELL JANE HOBDEN –  what on earth are you talking about????   If Jane was to read “PAST HISTORY CORRECTLY it stated no drug or alcohol dependency and that we as a family know to be true. 

Jane Hobden goes onto state “Problems related to alleged sexual abuse of child by person outside primary support group  –  please explain what on earth are you talking about???? – the entry for this is dated 01 Sep 2017.    These disturbing comments prompted me to visit Edmonton Police Station last night as I am most concerned. The Police reassured me they had absolutely nothing on their records so now we would like to hear what Ms Hobden is going on about.

Interestingly Aspergers syndrome is mentioned only once by Jane Hobden on the 01 June 2017.  Elizabeth has been said to have this condition more than once in the files so I can see from my records.

Tina Keeling documents “emotionally unstable PD 15.02.17

Mixed and other personality disorders are entered by Shalandran Padayachee – who is she???

Perhaps someone can enlighten me as to what “simple schizophrenia is” as mentioned by Tina Keeling.

In court papers it is documented that Schizophrenia is in the “Jeans”  ?????  can anyone enlighten me????  Are there any doctors that could explain what on earth do they mean. I’ve heard of genes but never Jeans in terms of so called mental health conditions.   Lets hear from the Doctors about these “Jeans” please.  

Not only have I contacted the Police but just like the professionals above I am documenting evidence of the kind of abuse going on to vulnerable people under care who as Finola Moss states:

“its quite terrifying the powers the AMHP, Police etc have to MHA sections, detain and forcefully medicate particularly now under S136.  Are there no second opinions allowed?  What are the safeguards and where are the civil liberties??

Why are there only two parent representatives at the review?  Yes, why is that so?????

All very disheartening.”

Elizabeth is 31 now and I do not think she is being treated very fairly at all.  She is not a risk to self or others.  She has only just been assessed by an independent psychiatrist for court purposes as having full capacity.   She does see things differently to other people and expresses herself differently BUT SO WHAT – Baroness Hollins is the person I am impressed with whom the team could learn a great deal from as she knows how to communicate with someone like my daughter and is an honest person who I met at the Royal College of Nursing recently.  It is all about “truth trust and consent” as Dr Bob Johnson would say in his book “Emotional Health” and Dr Johnson was the Consultant Psychiatrist who did an excellent and true report on Elizabeth for court purposes whilst at Cambian Wales.

Elizabeth has never self-harmed so why document she has when she hasn’t?

She has been reluctant to take medication as it has given her terrible side effects but she is allergic to the current medication and would like a small reduction -she is not asking to come off it altogether right now – the Risperidon has cased a nasty rash previous doctors took notice of this and stopped the medication.   When Elizabeth stopped taking the drug on one occasion a nurse (unconnected with the scheme) who is a friend had a chat with Elizabeth and explained in a nice way the reasons why she should not just stop taking these chemicals in one go.   If the reduction had been done properly by the NHS she would not have suffered withdrawal symptoms (not relapse of a so called illness).  She cannot metabolise the drugs as documented in the P450 liver enzyme test certificate.

It is threatening what I am reading in the report –  it is truly horrible that the “Activities” column is practically all about medication and the untrained support workers who learn about prescribing on line are expected to: ensure she and others take the drugs, explain why she is having to take the drugs, encourage her to comply with taking the drugs, to explain the importance and benefits of medication and possible side effects. The staff would not have the knowledge – they are not trained as are doctors and nurses but even they choose to ignore serious side effects and such doctors should cause no harm. We have turned to professors and scientists who know the workings of these drugs and do have the expertise.   Psychiatrist Dr Ilyas Mirza (Consultant) is the one responsible –  he is prescribing the drug Risperidon off label  –  well over the time recommended by Manufacturers and her GP is prescribing drugs to counteract the side effects of this medication such as laxatives for constipation which is life threatening and Piriton to get rid of the rash (isn’t this combination contra indicated).   One drug to counteract the other – I believe this is not the answer to prescribe lots of other drugs on top of one she is allergic to especially to someone who is documented in the files as having problems with physical health – quite serious from what I can read from the files.  She came off the drug Aripiprazole  too steeply and was allowed to do this under NHS care instead of a slow gradual titration.  The NHS is spending a fortune on the wrong types of facilities trapping people like my daughter on never ending CTOs which are for control purposes and have attached conditions to them such as forcing someone to live at a certain place – it says  Elizabeth has to live at the accommodation she has been given and what is thought to be in her best interest.  It says that her family MUST NOT remove her from this supported accommodation or terminate her tenancy without agreement from ENFIELD COMMUNITY REHAB TEAM  who are based at Park Avenue Bush Hill Park Enfield and the goals are to help her live independently.  SO HOW DOES THIS WORK BY NOT GIVING HER CHOICE, BY THREATENING THAT SHE COULD END UP BACK IN HOSPITAL – IF SHE REFUSES TO TAKE THE DRUG.   HOW DOES THIS WORK IF SHE DOES NOT LIKE WHERE SHE IS LIVING, IS NOT BEING TREATED FAIRLY.  SHE IS COMPLYING WITH THEIR DRUGS – SHE IS OF NO RISK TO SELF OR OTHERS.   SHE FINDS MEETINGS STRESSFUL AND THEIR VISITS ARE SOMETIMES WITHOUT WARNING SO SHE HAS NO ADVOCATE WITH HER.  “she needs a little support and future placement is crucial  but one day she would like to live in her own accommodation and prefers to do things at her own pace.  She does not wish to be rushed or asked to do many activities”     This accommodation is paid for by Enfield CCG and Local Authority.

We as a family have no plans to take her away from the accommodation right now but how does this work if Elizabeth became unhappy then she should be entitled to leave this accommodation and there have been times she has been unhappy.   It is not the house, it is not the area, it is not the residents, it is not the majority of support workers who make Elizabeth unhappy.    What is making her unhappy at that accommodation is having to engage with a team who have previously been involved and my story of Get Her Back We Are Paying for That relates to this team and time and time again they have taken me to court to displace me as the nearest relative whereas if we had been included in open dialogue things could have been so different – there would be honesty, transparency – no nastiness such as the comments in red above.  I think that open dialogue is the way forward and I applaud those areas where this has been adopted.  It is costly to keep taking someone to court and threatening all the time.  Elizabeth has a mind of her own – it is documented about her attending Enfield Community Rehab with one of their psychologists who is known to us but she did not wish to attend the five sessions that were offered (nothing to do with me as I did not know about this at the time).  Elizabeth decided on her own accord she did not want this and wanted art therapy instead.  Elizabeth is more interested in art and music therapy than psychology sessions from what I can see.   Elizabeth has been told by the Community Rehab team to attend their Park Avenue day centre but Elizabeth has stated she does not wish to attend and prefers to do her own choice of activities and does not wish any other activities to be imposed on her.   (nothing to do with me –  I am pleased that Elizabeth is finding her voice to speak up).   She wants to go back to catering work so I see – she has a wellness and recovery pack – we’ve had all this before and nothing was offered and given in terms of activities after 6 months at Moti Villa.

ACCORDING TO RECORDS:

Poor sleep    (she is sleeping fine)

Agitation (no even her recent operation she has coped with)

Low mood (no because she can go out places and has made friends)

Increased paranoid thoughts –  she hasn’t got any paranoid thoughts at all.  The only time we saw negative effects was when she had come off TOO STEEPLY the drug which is bound to be anyone’s reaction.  

Inappropriate laughing –  NO –  this goes back to when Elizabeth was in day centre at Chase Farm in 2008 or 9  when she went missing from the day centre with someone who should have been escorted everywhere who was on a criminal charge. 

The comments are  getting worse – they have dug out the most negative comments at the time when Elizabeth going back to 2010.

Headache – YES – this is true – a side effect of the drugs given

Anger – well surely Elizabeth is entitled to some emotions after all she has been through isn’t anyone??  – as it happens Elizabeth does not suffer from negative emotions relating to anger any more.

Low appetite –  absolute rubbish.  She is cooking, looking after herself in this respect

Paranoid that the police are coming to get her.  ACTUALLY THE POLICE HAVE TREATED MY DAUGHTER MORE FAIRER THAN THE PROFESSIONALS –  the Police have got more skills in talking to Elizabeth than some who are closely involved in her care right now and what upset Elizabeth having moved from hospital environment to the community after over 20 weeks was being expected to immediately engage in the activities and programme of the scheme, yes she did flare up and suffered from anxiety at the beginning, yes she did react to situations especially when staff announced “I’m calling the Police” –  yes she did react to them trying to push a highly addictive drug called Lorazepam regularly.  Yes it has not been smooth her settling in to a scheme after becoming more traumatised by the very wrong environment of acute ward over 20 weeks plus

“unusual personality”  that is totally wrong “can be OK one moment and not the next”    In actual fact Elizabeth has a different way of seeing things.  She is being treated like a prisoner being ordered to do what these professionals say who are constantly monitoring her instead of letting her do things herself when she is ready, expecting her to fill out a Wellbeing book, expecting her to engage with their activities when it is clear she has interests she would like to pursue which could be provided such as art and music.   If she had a little voluntary job this would be good but where is the help for this. Elizabeth would need a mentor as she can misinterpret sometimes situations and  what someone is saying to her and vice versa.

NO WAY DOES SHE HEAR VOICES AND NEVER HAS DONE AND THIS WAS SOMETHING I QUERIED FROM THE START   Hearing voices does not mean someone has Schizophrenia.  Everyone can hear a voice in their head telling them to get up for work, to do the ironing, to go out somewhere, what to eat.  WHAT IS WRONG WITH HEARING VOICES AS  EVERYONE HEARS VOICES.  On a negative front if someone has been extremely badly abused and this may not necessarily be via their own families as professionals tend to jump to conclusion but there could be abuse from outside of the family and immediately without proper assessment on physical health, psychiatric drugs are prescribed which you cannot just come off and if you do it too steeply then someone can end up suffering from withdrawal symptoms and psychosis.    The fact is that doctors do not wish to help taking the easy way out – there are no facilities for the purpose of withdrawing safely from prescribed drugs anywhere in the UK and when you take someone off these drugs it reveals everything and that this person is in fact NOT MENTALLY ILL AT ALL but has had his/her emotions suppressed for so many years – Elizabeth spoke clearly and told the entire family what happened to her so she has never heard voices.

As far as unusual personality goes –  she is just a normal person, experiencing quite normal reaction to what she has been through and what has NOT been dealt with for so many years properly.

Elizabeth has stated she will engage with the “new” or should I say “old” care coordinator from Cambian days back in 2012 -she would prefer a home visit –  that is reasonable and not as documented – she has not been able to go out much lately because of her foot.  This is something she dealt with herself, getting herself to and from the appointment because no one could go with her.

Yes she does need a bit of support with budgeting but finds it difficult to engage with staff on this issue.

She can cook and do shopping on her own

“no management problem”  –   it sounds so clinical – it sounds as though they describe an object rather than a person who has feelings and those feelings should be understood by professionals but are clearly not.

Now they go on to say positive things:

  • Well groomed, no evidence of neglect.
  • Feeling well and expressed no concerns.
  • Sleep and appetite normal yet earlier comments record otherwise.
  • Bright and cheerful in mood, smiling appropriately and good rapport throughout.
  • No evidence of psychosis- abnormal thought or paranoia.
  • No suicidal thoughts of ideation or self harm or harm to others.
  • Motivated to take medication (THAT IS NO THANKS TO YOU, THE TEAM BUT THANKS TO MYSELF AND SOMEONE I KNOW WHO IS A NURSE).

“She stated her mother no longer visits” – not true as I am often invited over but because I am at work I cannot always attend. I never said “leave you to your own device” – it sounds like you are talking about a machine.  I wish the team would leave Elizabeth to her own “device” and stop ticking their boxes and reporting wrongly.   Elizabeth does not need their “care” really in terms of what is provided in-house, she needs help in integrating into society and she needs a mentor to help her in a work environment of any kind.   All she wants is friends, kindness and does not wish to become isolated.  We don’t have long discussions on the phone but sometimes Elizabeth will ring me.    Now the care coordinator wishes to see her every two weeks – she is subject to a CTO which is nothing more than for control purposes and enables threat of re-admission into hospital.  I did not know an underlying section three ran at the same time.  I thought that once a section 3 came to an end then the CTO took its place.  It is nothing more than a section in the community but they cannot force drugs upon people unlike in hospital.  This is nothing more than to ensure that someone can easily be recalled to hospital if they so much as step out of line.

It is so upsetting the way they have described Elizabeth by saying she has a drug alcohol problem.  No way has this ever been the case.   She did go out with another resident and had an odd glass of alcohol but this made her feel unwell and she had the sense to realise that you should not mix medication with alcohol but at Mays Cottage she was offered cannabis and I could just imagine the staff coming in to work to smell that distinctive smell of weed –   I am laughing at this now as I would have liked to have seen their faces.  We took her on holiday to Scotland and she was invited to go with the private MH professionals  to France, Spain and Dubai and Australia – this care cost a fraction of the price of Cygnet, Huntercombe, Cambian and other shocking places.  It was doing her the world of good and she came back on a fraction of chemicals but did not want to take the tiny portion and this – not relapse of any so called illness got her back into shocking mainstream care.  If they turned to Baroness Hollins and Working to Recovery she could be 100% well and recover quickly and in my opinion it is only a matter of her gaining confidence and learning about other people and interactions – yes this is an area she needs help with as she can get things wrong and misunderstand.

One minute it says she does not wish to have information shared with her mother but Elizabeth likes to share information.  She shares her visits to family with staff and likewise is sharing with the family and this is why we should be included in OPEN DIALOGUE

When Elizabeth came back from Australia she wanted nothing to do with MH professionals who only think about drugging.  Most of this report is about drugs.

Whilst Elizabeth is accused of contradiction I would say that the team are the culprits here taking comments recorded in Past History at a time when Elizabeth was badly abused under care and trying to make out that this was due to her illness or the fault of her mother.  When I read the files going back to 2010 and the “nominal nearest relative” comments full of blame and mention of THE MOTHER.   Well that mother did a thorough investigation at a time she was training to be a Police officer herself.

I WOULD LIKE TO GO ON TO PRAISE THE OFFICER AT EDMONTON POLICE STATION YE7138 I SAW YESTERDAY ABOUT SOME REALLY DISTURBING COMMENTS THAT COULD SO EASILY BE TWISTED.

Elizabeth has been kept informed of the contents of my blog and is happy for me to post this as judging by some of the comments I have received there are many who are in similar circumstances and could relate to what I have documented here and this is why in the absence of reporting in media it is good to report on what is going on.    I would praise Finola Moss for her brilliant blog which is so true.

 

NEAREST RELATIVE UNDER MENTAL HEALTH ACT 1983 (Sections 26-30 Mental Health Act 1983)

The following are treated as “relatives” under the MHA.

  • Husband/wife/civil partner;
  • Partner who has been living with you as if they were your husband, wife or civil partner for more than six months
  • Son or daughter
  • mother or father
  • brother or sister
  • grandmother or granddaughter
  • aunt or uncle
  • nephew or niece
  • anyone else you have been living with for at least five years 
  • Can a Nearest Relative Change?

Rules regarding who your nearest relative is means sometimes your NR might change without you or anyone else doing anything.  Eg. – if you got married your husband or wife would normally become your nearest relative.

OR – in our case:

THE COUNTY COURT CAN ALSO CHANGE YOUR NR OR MAKE SOMEONE YOUR NEAREST RELATIVE IF YOU DONT HAVE ONE ALREADY.  

Normally an Approved Mental Health Professional (AMHP) makes the application for detention or guardianship.  An AMHP is someone “specially trained” to decide whether people need to be detained or put on guardianship.  Questions need to be asked as to why such professionals behave the way they do towards vulnerable people my true story describes exactly what we went through in 2014 when clozapine was deprived for four days:    get-her-back-we-are-paying-for-that-17-05-15

S2 had expired.  Huntercombe sent her back to Suffolk Ward, Enfield.  Elizabeth had been forcibly drugged on contra-indicated Clonazepam and Risperiedon at Huntercombe and was  OF NO RISK TO SELF OR OTHERS contrary to what was written in the previous tribunal papers deliberately negatively by the RC.  I was waiting to meet Elizabeth when she had arrived back to Enfield around midnight.

Elizabeth had been sent all over London to different hospitals on PICU/acute wards and was further traumatised by all this as she was allowed to come off 2.5mg Aripiprazole at her request in one go by the NHS but they did not titrate it down properly.   These prison types of hospital facility (whether public or private) are no place for someone suffering from PTSD to get better.   Huntercombe  assessed her as having “high spectrum Aspergers” whereas locally she is said to have low intelligence which is not true at all.  Elizabeth was so happy to be regarded as someone who was intelligent by the team at Huntercombe but for some reason local doctors do not listen.   They prefer to stick to the damaging unscientific labels of  “Emotional Unstable Personality Disorder” or “Paranoid Schizophrenia”  but suddenly for some strange reason they have dropped (treatment resistant)” – “Treatment Resistant” means “poor/non metaboliser”.     No bio marker has ever been found for this unscientific label.  However, the label of “schizophrenia” is just an excuse for “treatment” using antipsychotic drugs which should only be given short term. Locally they prefer to ignore physical health problems and do not read the files properly before prescribing but then again, the files are full of errors and fabricated by non-medical professionals who have written untruthfully however – they prefer to ignore the damaging things that have happened to Elizabeth under their own care.   This “treatment” of Risperidon has been tried and failed before and Elizabeth had to be taken off the drug due to allergic reaction, hence my objection.  

I was Elizabeth’s nearest relative until recently when I was forced to delegate my role, threatened that I would get enormous costs if I continued to defend myself in court against people who have written the most nasty damaging and untrue comments against us. On return from Huntercombe, Elizabeth was placed on Section 5.2 – and deprived of her liberty unlawfully.  They had put her back on the drugs Clonazepam as well as Risperidon –  Elizabeth was of no risk to anyone yet some very detrimental things were stated by two doctors who elaborate using negative comments which did not apply to Elizabeth as she was subdued and drugged once again.  Elizabeth was denied time off the ward with her family on section 17 leave. We were told she did not wish to share information with us and this is constantly used I suppose for the reason it is protection for themselves. 

APOLOGY LETTER FROM HEAD OF MH LAW CORPORATE DIRECTORATE BARNET ENFIELD AND HARINGEY MH TRUST DATED 12 JULY 2017:

 “your detention under Section 2 MHA which began on 12th July 2017 ceased at midnight beginning 10th July 2017 because the 28 day period authorised by Section 2 elapsed at that time.  You were subsequently detained again using MHA holding powers at 6pm on the 10th July.  (If during the intervening 18-hour period between expiry of S2 and your detention under holding powers you were not consenting to remain on the ward it is likely your liberty was infringed)  I am very sorry if this is the case and hope you will accept my apologies on behalf of the Trust.  We will be looking carefully at this incident to establish what went wrong and how we can prevent something like this happening again in future.”   

BARRING ORDER and COURT

London Borough of Enfield paid £308 to take me to court to displace me as NR with an AHMP I remembered back in 2010.    Elizabeth then lived at Moti Villa (a MH scheme in the community) and was dreadfully abused there.   The person appointed by the Local Authority as “nominal nearest relative” at the Royal Courts of Justice County Court Hearing I did not attend on 12 July 2017 was someone involved in the initial investigation into my complaint.  There were so many errors in the court papers I was surprised they were even accepted.  My address was wrong, names were misspelt.  “The Applicant seeks an urgent order displacing the Respondent as the nearest relative for her daughter ………………..and that the functions of the nearest relative shall be exercisable by the current DIRECTOR OF HEALTH, HOUSING AND ADULT SOCIAL CARE AT THE LONDON BOROUGH OF ENFIELD  – see below:

http://www.enfieldccg.nhs.uk/profiles/ray-james/10588I.   https://www.england.nhs.uk/2017/10/nhs-england-appoints-senior-local-government-leader-as-national-learning-disability-director/

Accompanying the Application was a negative report by Dr M stating  “it was the opinion of the treating consultant  (Huntercombe) that  …………. has Aspergers syndrome and he advised a specialist referral.”  However Dr M states:   “It is in my opinion that …………has an underlying psychotic “illness” which at times results in her becoming highly aroused and unable to manage her own behaviour.  She has been assessed as having borderline learning difficulties and this is complicating her current presentation.   I have reviewed ………………..past history  (Past History is wrong) following more prolonged in-patient treatment with antispscyhotic medication ………….seems more settled and more able to engage in activities within the community.”  (ELIZABETH WAS NOT IN THE COMMUNITY AND HAD BEEN HELD LIKE A PRISONER FOR AT LEAST THREE MONTHS, DEPRIVED OF CONTACT WITH  FAMILY OFF WARD FOR QUITE SOME TIME.  SHE WAS NOT RELEASED FROM S3 UNTIL SEPTEMBER 2017.  

HERE IS WHY I OBJECTED TO TREATMENT ON SUFFOLK WARD:

  • ANOTHER RC THREATENED TO THROW HER OUT ON THE STREET HOMELESS;
  • FORCIBLY DRAGGED BY SUCH FORCE HER SLIPPERS BROKE AND INJECTED;
  • SOLICTORS CANCELLED BY MHA OFFICE UNKNOWN TO HER;
  • BEEN ILLEGALLY DEPRIVED OF HER LIBERTY HENCE APOLOGY LETTER FROM MC of MHA DIRECTORATE;   
  • ATTACKED BY ANOTHER PATIENT, BEATEN AROUND THE HEAD  AND SENT TO EDGWARE – TRENT WARD;
  • DELIBERATELY NEGATIVE REPORTS FOR TRIBUNAL WHEN ELIZABETH HAD BEEN STABLE (done for a reason said the RC when Elizbabeth asked “why?”)
  • NOISY, VOLATILE ENVIRONMENT LIKE A WAR ZONE AT TIMES SECLUSION ROOMS SOMETIMES IN USE DAY AND NIGHT; 
  • FORCED DRUG TREATMENT INSTEAD OF PSYCHOTHERAPY – ONLY ONE PSYCHOLOGIST SHARED BETWEEN LOTS OF WARDS SO I HEARD 

OTHER RCS AGREED HAT A PICU/ACUTE WARD WAS NOT THE RIGHT ENVIRONMENT FOR ELIZABETH TO BE IN AND SHE WAS GOING DOWNHILL IN THAT PRISON LIKE ENVIRONMENT.

It was not Section 3 I objected to but the facility itself and “treatment” of the same nature which had been tried and failed before.  I asked for a second opinion – it is even mentioned in the files that Elizabeth gained no benefit from antipsychotics and this is because Elizabeth cannot metabolise these drugs as proven by the P450 liver enzyme tests.  I wanted a SOAD to assess on complex trauma and for the proper treatment to be provided in the right environment but there are no decent facilities apart from in York where they have a place called “The Retreat” and “Amitola Communities”.   If Elizabeth got the right kind of care which is therapy I would not have minded about the Section 3 but this would not have been necessary as Elizabeth would have been compliant with such therapy as she was in Australia and Scotland where we found the right kind of care through http://www.working-to-recovery and saw Elizabeth come back well after four wonderful months away where she travelled extensively with private MH professionals who do not agree with damaging labels and gave proper care in the right environment.

Dr M’s Report dated 06.07.17:

…………….. has complex mental health difficulties and was transferred from PICU ward yesterday (05.07.17).  She has poor insight into her condition and could not be safely managed on the ward if she continued to be informal.  She is disorganised in her thinking and expressing delusional thoughts regarding the devil and does not believe she requires treatment at the present time.”     But what exactly is her condition? – an entire team from another hospital has disagreed as well as conflict of opinion in the local area by various other professionals previously and a full psychiatric report on complex PTSD.  Elizabeth was detained longer than was necessary in a hospital environment like prison  and a particularly negative report was produced on purpose by the RC for the last tribunal  which upset Elizabeth who asked “why” to which she was told  “this is done for a reason”.

I received a call from the AHMP (SM) from Enfield Community Rehab team to say they would be displacing me as Nearest Relative for being “unreasonable”.   I was told verbally  the Preliminary Hearing would be on 12 July 2017 and that the next morning I would be given full details.  I was not and I had to find out myself by phoning the Council’s legal department as by mid-morning I still had not heard anything about which court number and the Legal Department told me it was at RcJ and time so I had to  rush to get to the RcJ.  The Hearing took place without me because I was given the wrong details (ie. court no.) and I ended up attending the wrong court but Lady Justice Roberts saw me and even read all my evidence I had brought together on why Enfield Council would not make a suitable NR.  She was kind enough to write to me afterwards “Her Ladyship hopes you managed to get to the correct court for the hearing.”   This was about my best experience in court.  She had asked me what I hoped to see as an outcome and I responded “all I want is to be treated fairly” but I can see that things are not fair in court.  When you are dragged to court as I was and called “unreasonable” for a start you cannot get legal aid if you work/own a property.  When it came to medication/treatment the Judge had no remit and when I was asked if I disagreed with the treatment this went against me but this is wrong as there is conflict of opinion on diagnosis and treatment by professionals and Elizabeth should have had a SOAD who was completely independent from the local team and not chosen by the local team.  No way should a team of professionals locally be allowed to carry out assessments on anyone vulnerable like my daughter unless it is done independently.

In my absence I was displaced by the Court giving temporary consent for the Local Authority to act as NR but I recognised the name of the AHMP going back to 2010 and I objected on the grounds that she was absolutely unsuitable to act as NR.   I have her notes and her response to our PHSO complaint regarding when Elizabeth had been multiply abused under Moti Villa Scheme (2010) hence my objection to her “suitability” for the role of NR.

I was invited to attend the next Hearing on 19th July by and this time given the correct details but when I visited Elizabeth after going up to RcJ and after missing the Preliminary Hearing, the AHMP who took me to court (SM) was there and announced “Enfield Council are now your NR and then went on to comment about my unsuitability for this role.  She had barged in to my visit and told me to leave the patient’s visiting room but I refused.  I had rushed up to see Elizabeth and I felt she was extremely rude by barging in the way she did and by the way she spoke, ignoring me and directing her comments at Elizabeth and waving the Court Order in front of Elizabeth in a gloating manner.

The Judge remarked on my substantial evidence and was interested in the P450 liver Enzyme test results. When he said “have you seen this?” the Council’s legal representative said “no” which was untrue of course.    I provided substantial evidence especially as to why the “NOMINAL NEAREST RELATIVE OF ENFIELD COUNCIL WAS UNSUITABLE  to be NR and did a Witness Statement as well as “Particulars of Claim” – I had to correct their Particulars of Claim from start to finish as there were so many errors.  It took me a long time to do this and to type and present the legal documents to look identical to theirs.    

Some evidence by the Council’s Legal Representative was handed to the Judge which we had not seen, not included in the court papers.    I was given a copy of the two AHMP’s comments relating to a visit they made to Elizabeth at a time when she was not well which of course looked extremely negative but I have seen that these people like to invent all sorts and some comments in the court papers were hilarious.  I will comment on that later.

So I decided to respond to this evidence and I copied everyone in including the Judge’s Clerk but this did not go down at all well but I have never been forced to have to stand up for myself like this before and I never got a  chance to at Court of Protection in 2014.  Thankfully that case went in my favour and I have nothing but praise for the Court of Protection who have fairly treated us all along.  Elizabeth was allowed to come home and live a care home  said to be “Best Interest” where she had no food at the weekend –  all recorded in the files and this care home is Phoenix House Stepping Stones in Northampton rated “good” by the CQC 

It was decided it was “best interest” for Elizabeth to live in her “supported living scheme” in the community.  However Elizabeth is more settled now – a scheme such as this where residents are not even given front door keys should be only be for 1 year in my opinion.

When the Judge asked me would I agree to the “treatment” I responded –  “what treatment exactly”  – a drug she was found to be allergic to in the past for schizophrenia when Huntercombe diagnosed high functioning Aspergers. This resulted in the AHMP being allowed to remain as nominal NR pending next Hearing.  The NHS negligently allowed her to come off the last chemical in one go when it should have been slowly and gradually titrated down.   The treatment that should have been given was psychotherapy and EMDR and I had looked up some suitable facilities having spoken to someone I know who was a colleague of Dr R D Laing – here are some of his comments:

“my late friend and colleague Dr R D Laing worked with such folk using psychotherapy and no drugs. He and Dr Berke successfully treated Mary Barnes (she wrote a book about her experiences from severe mental disorder to good health) Mary came to see me with a brilliant idea which I was able to put into operation but giving credit to her (Philadelphia Association).  He mentions the Cassel Hospital specialising psychoanalytical psychotherapy.     The Cassel is an NHS Hospital.   “Ronnie Laing treated folk with psychoanalytical psychotherapy without drugs – it takes longer but is successful.    Psychiatrists are physicians not trained psychoanalytically.  I was once asked at Kings College Hospital London what drugs I used when treating patients with psychosis.  When I said as a psychoanalyst I did not use any drugs they were shocked. I was shocked that they were shocked.   

 LONDON BOROUGH OF ENFIELD v SUSAN BEVIS PRELIMINARY HEARING 12 July 2017

Particulars of Claim as amended 13.07.17

  1.  “This is an urgent application made under Section 29(3) of the MHA 1983 to displace the Respondent (Ms Susan Bevis) as the Nearest Relative of her daughter ……..it is the Applicant’s case that the following grounds under Section 29 (3) (c) and (e) of the MHA to displace the Respondent are made out:
  • the respondent unreasonably objects to the making of an application for admission for treatment in respect of her daughter …………………..;
  • the Respondent is not a suitable person to act as Nearest Relative.

Her mother (the Respondent to this application) is his??????  Nearest Relative.”

……………….is being held on Suffolk Ward – Chase Farm Hospital, The Ridgeway, Enfield EN2 7JR under section 5(2) of the MHA.  Detention under this provision in hospital is authorised for 72 hours.  Authority to detain ………………..under this provision expires at 00.00 on 12 July 2017. 

Manufacturers instructions for drugs such as Risperidone are only for about 8 weeks but doctors like to keep patients on these chemicals for a long time.

Medical Condition stated in Particulars of Claim, as amended 13.07.17.

“……………… was detained most recently on 13 June 2017)???  Don’t think this is right at all.

The Applicant considers that ……………….meets the criteria for admission for treatment under section 3 of the MHA and would make such an application if the Respondent were not objecting to the same”    The Respondent objects quite rightly so because such a ward is the wrong environment to get well- it is noisy and volatile and also the treatment is wrong for complex PTSD and high functioning Aspergers so how comes I am labelled as unreasonable when Doctors have diagnosed these conditions and a SOAD has been denied to Elizabeth?   

Consultants “Drs M and AA’s Report 6th and 7th July recommend that “………………..be detained for treatment under section 3 MHA” handwritten in the Particulars of Claim  date of reading at being 10 July 2017.

It is my opinion that ………….has an underlying psychotic illness which at times results in her becoming high aroused and unable to manage her own behaviour.  She has been assessed as having borderline learning difficulties which is complicating her current presentation.  I have reviewed ………….past history and following more prolonged inpatient treatment with antipsychotic medication …………..appears more settled and more able to engage in activities within the community.  It is my opinion that …………..requires a further period of in-patient treatment in order to have a longer period of stability on antipsychotic treatment to allow a longer reintegration home with an exploration of her social activities and to allow a forensic assessment in order to try to contain any potential risk she poses to others.”    No she does not!

Past history: as documented in the files is inaccurate.    There is big conflict of opinion on diagnosis between various Doctors in fact, a huge divide in opinion with Huntercombe’s recent assessment but Elizabeth was denied a proper independent assessment by a specialist in the field of PTSD and Aspergers is being denied and recent opinion by a whole team at Huntercombe has been ignored in favour of “mental illness” “Emotionally Unstable Personality Disorder and paranoid schizophrenia.

The drug Risperiedon (2mg) is being prescribed and has been for four months and Elizabeth has not seen a SOAD (Second Opinion Doctor).   Doctors are ignoring the fact that Elizabeth had an allergic reaction to this drug back in 2012 and now she has a rash –  Here is an extract from the report on :

Drug History

she has been prescribed various antipsychotics including olanzapine, risperidone- to which she developed a rash) and aripiprazole with no response. She has been prescribed quetiapine for quite some time.  The current dose of quetiapine xl is 750mg once daily.    “on assessing her mental capacity formally around medication decisions on 2 December 2010 she was judged as having mental capacity to make a decision regarding her medication”

Risperidone – Current “Treatment” given by Enfield MH of which she is allergic and has  been prescribed Piriton.    Instead it would have been good if these doctors started to think along the lines of proper withdrawals such as by the following method – no way should people be forced to take these highly dangerous drugs long term, against manufacturers instructions.

https://www.change.org/p/provide-tapering-strips-to-help-users-who-want-to-stop-taking-anxiety-depression-drugs/d?source_location=combo_psf

We managed to get the poisonous dye tablets changed to white and every day Elizabeth’s support workers at her scheme give out the drugs.  They have built a medication room within the shared house and staff sit in there a lot of the time.  Elizabeth has come out in a rash all over her back and her GP at Oakwood Medical Practice has now prescribed Piriton but I have looked this up and found that this is contra-indicated.  There has been no review or reduction in the drug since her return to Suffolk Ward in July.   This is not good and also I note another prescription from Oakwood Medical Practice even more alarming is laxatives.   A known side-effect of the drug Risperidon is constipation and someone died of this recently.

Constipation death ‘wholly preventable’

Can I be forced to take medication when I am living in the community? – this piece below refers to something I have seen on the Mind website.

You cannot be compelled to take medication in the community. This is the case even if you are subject to supervised community treatment in the community under a Community Treatment Order (CTO). You may, however, be recalled to hospital if you have broken any conditions of your CTO, and you may be compelled to take medication there. For further information on the effects of supervised community treatment, see Community care and aftercare. Even if you are not subject to compulsion under any sections of the Mental Health Act, you may decide you have little choice about continuing to take your medication. For example, if you are still on section but your RC (or AC) has given you leave from the ward under section 17 MHA, they can revoke it at any time and require you to stay on the ward. Your RC (or AC) should not do this simply because you stop taking medication, but stopping may lead to a review of your health and a consideration of whether leave should continue. Similarly, if you have been conditionally discharged from hospital and are subject to supervision in the community, the Secretary of State for Justice may review your case, and has the power to recall you to hospital, if you are becoming a risk because you cease taking medication.

If you are discharged from section, you do not have to take medication. However, if concern is then expressed about your health or safety, the authorities might organise an assessment to decide whether you should be re-admitted to hospital, and possibly detained under the MHA. For further details, see Civil admission to hospital.

It seems like doctors are failing to inform patients of the risks and side effects of antipsychotics.  They are also failing to look thoroughly into a patient’s past history as if they did they would see that Elizabeth was taken off this same drug because of adverse reaction in 2012.  The unique P450 liver enzyme test results show “poor/non metaboliser” which means that Elizabeth is prone to adverse reactions on psychiatric drugs.      These tests I had done are not yet available through NHS but will be soon so I heard recently.  I had them done privately, recommended by the Country’s leading expert who referred Elizabeth to Holland.  “Treatment Resistant” = poor/non metaboliser of drugs as concluded with accurate lab tests.  Elizabeth’s symptoms have been mistaken for signs of “illness” when all along she could not metabolise these chemicals and was having a bad reaction to them plus of course she should have got counselling.  I was looking at my extensive records today back to 2010 when Elizabeth suffered serious abuse under Moti Villa – a scheme in the community.

By section 11(4) of the MHA an Approved Mental Health Professional (AHMP) may not make an application for admission for treatment under section 3 of the MHA in respect of a patient if the patient’s nearest relative has notified the AHMP that they object to the application being made.  The Applicant and the Consultant Psychiatrist consulted with the Respondent about the proposal to admit ………………. for treatment under Section 3 of the MHA. The Respondent objected to her daughter being detained for treatment under section 3 of the MHA.  But why unreasonable? when Doctors ignore manufacturer’s instructions giving contra-indicated drugs and keeping patients on  drugs longer than recommended by the manufacturers themselves. They do not titrate the drugs down slowly and gradually as they should and this leads to withdrawal symptoms which mistaken for relapse/symptoms of so called “mental illness”.    

https://www.youtube.com/watch?v=eAnVi3Zuay4    –  thank goodness there are some who care ie Dr Joanna Moncrieff – RADAR.

I think that my objection was far from unreasonable –  we sent Elizabeth to stay with MH professionals in their home for humane care for four months.  Elizabeth travelled from Scotland to France and Spain – then to Dubai then Australia.  We saw her come back so well – the best we’d ever seen.  Four months in a peaceful, natural environment with proper care such as psychotherapy and good food did her wonders.  It was possible to work with her on much less drugs – how can you effectively work with someone on enormous quantities of chemicals or expect them to engage when they feel terrible? 

I’m not the only parent who is fed up with what is going on in the UK.  Their sons/daughters are sent away hundreds of miles from home to “prison environments” owned by corporate providers where brutal treatment goes on and enforced drugging plus isolation from their families which is very detrimental.  It is profitable  for those offering the “care” which does not address the real causes and is a complete waste of money.   The law is failing to protect the weak and vulnerable and families are not supported in court to defend themselves and if someone is dragged to court like I was there seems to be no fairness especially as far as the Nearest Relative/deprival of liberty/mental capacity is concerned and these areas need to be amended under the MHA to make it fairer as mental health law can easily be usurped by professionals who are ruthless in their dealings as I will go onto further document.  There needs to be accountability so that the following abuses do not continue not just within hospitals both private and public under MH/LD but also in connection with private providers of supported housing/living accommodation – these should be regulated independently and NOT BY ANY LOCAL AUTHORITY.    

Dispatches (Undercover Inside the Priory: Channel 4 …  

‘Disgusting’ treatment at Kent mental health service – BBC …

AUTHOR ERIC COATES WRITES BRILLIANTLY ABOUT THE TRUTH OF WHAT IS REALLY GOING ON:

https://www.madinamerica.com/2017/09/invisible-holocaust-gene-hypothesis/

Abuse is widespread –  it seems to be going on everywhere in the UK as there is no accountability. No way should a nearest relative be constantly dragged to court when there are genuine concerns on treatment and conflict of opinion by professionals.    I can understand this route of action if a nearest relative was convicted of serious abuse for instance but not in the case of a nearest relative who has genuine concerns of a very valid nature. It is wrong how some professionals try and manipulate the law.

I along with other parents would like the right facility provided not an expensive profit making private prison – a facility should have beautiful grounds and no forced drugging. Many people under the MH have suffered extensive abuse and are yet further abused under the current system. 

Particulars of Claim: state “Applicant has consulted with …………sister on 11 July 2017 “she does not want to act as Nearest Relative (please see AHMP’s report attached).  …………………’s father was not consulted because he had in the past made it known that he does not wish to act as Nearest Relative.   THIS IS UNTRUE.   

Elizabeth’s sister was  not even asked. Elizabeth’s sister had written to the Manager of Enfield Comm. Rehab :

“My Dad is going to give you a call at some point either today or early next week to be filled in with information with regards to my sister.  Also when you phoned me last week you did not ask me if I wanted to be nearest relative for my sister.  However, this has been put in the court papers issued to my mother.  You never asked me about this – you just asked if my mum would accept …………..going on a section and you asked about my father but you did not ask me so I suggest you rectify that in your court papers as this is not true”

She responded:

“Dear 

I did not ask you because for you to be Nearest Relative your mother would need to transfer this to you –  it is not for me to give you this responsibility to you.  I hope that is clear I will check the papers to see what you mean.”

UNREASONABLE 

I objected to the AHMP appointed as “nominal NR” This person was meant to carry out an investigation into my complaint going back to 2010 at Moti Villa.  Instead she wrote nasty comments and put blame on me for what happened under care provided by them.

I do not feel that the Preliminary Hearing should not have concluded granting nominal NR status to this AHMP as there were so many errors in the court papers.  The case should have been thrown out in my opinion.

I decided to be a  Litigant in Person when I read the shocking comments written in  court papers by the other AHMP (sm)

D… (East Enfield Team) had written her response:

“In the first paragraph she makes reference to “something really bad happened to her” – Police were involved but sadly they could not find the CCTV camera anywhere yet it states in the files there was one and makes reference to this.  ,

“she has twice deliberately got herself in a short space of time recently into hospital” –

Yes and we all know why so there is no point in any more cover-ups.  After we provided proper care in Australia Elizabeth was able to tell us everything.

 “……………….is trying to escape her MOTHER!  Her admissions to hospital have been precipitated by her MOTHER being overbearing and intruding on her personal space.  Frequently going to her accommodation late into the evening/night and refusing to leave when …………………….asks her to do so resulting in a fall-out in which “MUM”   perceives as her being mentally unwell  therefore excusing her own behaviours or respecting that LB has feelings and opinions of her own.  Support staff have regularly noted significant changes in ………………..behaviour and mood following MOTHER’s visits to her flat.      MORE LIES!!!   Just covering up aren’t you!  I have never read such rubbish.   

I can see now reading the files why there was such panic when I appointed Susan Hepburn (Hypnotherapist) as nothing was provided from the Person Centred Approach after 6 months!   I could have found out in just 1 hour what Elizabeth would have liked and then the team could have provided it.   When we took her to Harley Street she could not eat or swallow on nearly 800mg Quetiapine.  When she came out after seeing Susan I was astonished at the miracle we saw  – like a different person – like there was nothing wrong with her.

D stated Elizabeth was found not to have a LD and “best interest” was a placement under MH where she was ABUSED wasn’t she.  However private MH professionals who had Elizabeth live with them for four months would completely disagree with labelling –  totally stigmatizing and only if you live with someone can anything accurate be documented about someone’s “condition” NOT ILLNESS!.

SAFEGUARDING

I’ve heard the word “empowerment” plenty of times and “service users finding their own voice” but in actual fact I would call it abuse as Elizabeth was dragged to meeting after meeting with nine professionals flanked by three members of staff,  sprung on her at short notice and she did not wish to attend such meetings.  She was encouraged to tick boxes unrepresented by any advocate and put under pressure by NINE PROFESSIONALS including GP to blame myself and someone else – a friend of the family of serious abuse. The AHMP SM) was involved in this Safeguarding  NO ADVOCATE PRESENT – they were in breach of the Councils Code of Conduct and I have since received an apology letter from Trust and Council.   Wehen I requested the missing minutes the team sent them with everything covered in thick black lines of ink so you could not read anything this must have cost the Council a lot of money in ink.  I thought they were supposed to be short of resources and yet no expense is spared when it comes to taking the NR to court they do not approve of.   There is a pack of lies in those minutes you can imagine.    How nasty can you get.  I am glad that I saw them and I reported them to the Police.

Getting back to the “nominal NR’s” 2010 report:-

it is not the role of staff to do things for LB  –  I turned up one evening to find Elizabeth with sitting alone in darkness as the light bulb had gone and there was no spare lightbulbs. Elizabeth became isolated in a flat surrounded by others with MH problems.  The music from a neighbour’s flat was so loud beneath her causing the floor to vibrate and this bothered Elizabeth.  She goes on to defend:  “the living area may be untidy and disorganised but this is not uncommon for young people without independent life skills of their own age”   NO DM  –  ……………..she could not function on 800mg drugs – COULD YOU???  The flat was squalid, bins overflowing – green potatoes, sink full of washing up.  No money taken from office upstairs to buy healthy food –   “WE CANT BE BOTHERED WITH HER BECAUSE OF THE MOTHER”- so a family friend was told.   Confidentiality is often played upon by staff to cover up when things go wrong but the truth always comes out in the end   “Currently she is in receipt of a self-directed care package requesting that the local authority manages her care and support needs on her behalf.   Yes and is that why nothing was provided after 6 months of Person-Centred Approach ENFIELD COUNCIL?

“To summarise there is a long history of mother making complaints of the same nature in addition to requesting …………….be taken off all medication that direct payments are given.   “Hypnotherapy being harmful that it is not recommended under NICE Guidelines for LB’s nature and degree of mental illness”   RUBBISH!!! ……………….WAS  BADLY ABUSED UNDER CARE PROVIDED BY ENFIELD COUNCIL AND NOW WE ALL KNOW.  MY DAUGHTER WAS DRUGGED TO HILT AND WAS UNABLE TO SPEAK AT THE TIME.  YES I DID REQUEST DIRECT PAYMENTS SO THAT ELIZABETH COULD CHOOSE PEER SUPPORT FRIENDS AND IF MY COMPLAINTS WERE OF THE SAME NATURE THIS IS BECAUSE NOT ONE WAS ANSWERED PROPERLY.

“CONSENSUAL”   STOP TRYING TO MAKE EXCUSES.  THERE ARE MANY WITNESSES –  NO WAY SHOULD MY DAUGHTER EVER HAVE TO BE DRUGGED UP TO THE HILT AGAIN OVER UP THE RUTH.   YOU ARE THE REASON I DECIDED TO DEFEND MYSELF IN COURT AS A LITIGANT IN PERSON ONLY TO FIND MYSELF AT A DISADVANTAGE IN COURT BY A SYSTEM GEARED TO PROTECTING THE  PROFESSIONALS AND NOONE WILL DEAL WITH YOU AS A LITIGANT IN PERSON WHO WANTED THE REPORT FROM HUNTERCOMBE VITAL TO MY EVIDENCE.

I am tired of professionals who lie to cover up the truth who are unaccountable.  Like many parents – all I want is to see my daughter on as little drugs as possible in the hope that she can eventually be taken off the drugs as she is a trauma victim and needs specialist counselling for what she has been through.   The NHS should have titrated the 2.5mg aripiprazole slowly and gradually  but they did it far too steeply and she suffered chronic pain when off the drug.  Drugs mask the truth and can be used to cover up abuse – they should not be given long term off label against manufacturer’s instructions.  Professionals use coercion, gas lighting, threats and play on confidentiality.  “……………has requested we do not share details with her mother”.     I know how safeguarding works too –  STRICTLY IN THEIR FAVOUR WHILST THEY ATTEMPT TO ISOLATE THE PERSON CONCERNED FROM THEIR FAMILY AND ACCUSE THE FAMILY WRONGLY OF ABUSE USING A VULNERABLE PERSON IN A DESPICABLE WAY AND NOT ONLY WRITING NASTILY ABOUT MYSELF WHO HAS DARED TO CHALLENGE THEM BUT ALSO ABOUT ELIZABETH IN A DAMAGING WAY “THAT’S NOT TRUE MUM” – HER RESPONSE TO SOME OF THEIR COMMENTS.   at such meetings Elizabeth is often asked  “you don’t want your mother to see the files do you”.   But when I was present once at a meeting together with Elizabeth, she was asked if it was OK  to share information and this did not go down too well when she said “OK”  Now they would have Elizabeth in first and then say “she doesn’t want you to see the files”  –  well I have enough files to prove my point.

Judging by the comments written about me I am not popular with the team but I have acquired extensive records – it is a pity they dismiss me and exclude me from open dialogue – if there was an open transparent system I would have no complaints.  If there was inclusion, not exclusion and playing on confidentiality constantly then there would be accurate file records and issues could be resolved and a clear picture gained –  my local area are trialling open dialogue but we have been excluded.

I have been called “that woman

Vexatious complainant but because my complaints were different they could not label me with this so I can see.   Prolific –  well that is understandable when you get fobbed off with the same old letters from the CEO and she has not even replied to one relating to the time when Elizabeth was denied “medication” in breach of Art 3.

Nothing is done fairly, they stick together to defend one another and give my complaint to the department to which the complaint is all about –  I find this very amusing.

Money is being misspent on providing the wrong kind of facility – there seems to be no end of money to take people to court like myself to get rid of them.

Just because they are paying for the facility should not be reason for these professionals to treat someone in such a degrading manner.

Hearing people discuss you in another room for instance negatively – all this contributed to Elizabeth not settling from the beginning but she is settled now but the result was she is currently on a CTO.   The date this took place was on 19 Sep 2017 so she was held quite some time on Suffolk Ward on a section 3.   The care coordinator is described as “new” but she is far from new as she goes back to when Elizabeth was at Cambian.

Outcome of Court Hearing:

The Judge wanted to meet Elizabeth to hear what she wanted which I thought was extremely fair.  It is disgraceful how the Council treated Elizabeth not providing her with a copy of the court papers like an object rather than a person and it was ordered that a capacity assessment be arranged but because I had no trust whatsoever in the AHMPs I insisted upon an independent capacity assessment and Elizabeth was found to have capacity.

It was proposed by LBE the interim order shall continue.     Elizabeth had been treated like she was invisible by Enfield MH and I was very pleased with the Judge’s comments that he wanted her included in proceedings. 

Parties to cooperate (as agreed by His Honour Judge ………) for the patient to be joined to the proceedings Capacity Assessment to be carried out asap”

Dr S visited on a Sunday during the time that I was visiting and carried out the assessment –   Elizabeth did very well in this Assessment.  Elizabeth had appointed solicitors of her own.  They advised her to choose her sister as NR as I would lose in court and get all the costs.  Elizabeth agreed and her sister agreed to act as NR and because I was threatened with enormous costs I backed out delegating my role as NR to her sister.  Although it was said this was what Elizabeth wanted in terms of NR there is no way she would have done this if she was not advised to go for displacement of me as NR putting me in the position of not wishing to fight for this role any longer in court where it would be likely I would not stand a chance but I wanted to prove my point that professionals were covering up something very serious that happened under their care and I feel that the treatment of my daughter has been abusive by certain professionals.

As a litigant in person I felt I was at a disadvantage.  Huntercombe ignored my request for the assessment report and refused to give it stating I needed solicitors.  They have also refused to give the report to Elizabeth and we have jointly complained to the ICO about this.

I was put under pressure to back out of court proceedings so I wrote to the Judge explaining I felt I had no choice in the matter.

The Council had sent me a Consent Order trying to try to get me to agree to their costs of up to £5K.  “The Respondent shall agree to pay the Applicant’s costs” I crossed this bit out but was afraid about continuing with the case as much as I wanted to

On 3rd October last year I was invited to a meeting with Enfield Community Rehab Manager/care coordinator and AHMP who took me to court for displacement.   I attended this meeting along with younger daughter and a friend.  We asked if we could record this important meeting but were told by the manager it was against their human rights.  What about our human rights not to be documented in such a nasty manner and accurate things documented in the files.   This is biased in my opinion.  There is no law that says you cannot record and especially in light of the fact that so many damaging things have been said that cannot be erased from their records and this again is wrong.    It was mentioned that Enfield Council’s Legal Team suggested to allow having someone she knew (apart from me) as NR.  The Council agreed to the delegation of  NR to her sister but this was meant to be granted only for the duration of the CTO but what I did not realise was that underlying the CTO was a S3 –  I knew this S3 had expired but I did not know that the S3 could just be renewed and was constantly underlying the CTO so my signature on the accompanying delegation form was only meant to be until the date CTO was due to expire middle of March 2018.   Elizabeth has now settled well into the community and there is no reason for her to be on a CTO but I fear what they will do is act unfairly and keep on renewing it.  For the first renewal is six months and thereafter 12 years at a time and people are stuck on CTOs that have unfair conditions attached to them.  For instance that person may have the freedom to come and go when they like unrestricted as they are of NO RISK TO SELF OR OTHERS. However, that person has no front door key and has to be back by a certain time because staff sleep through the night and no one would hear that person knocking on the door.  The door bell has still not been repaired and I hope the boiler has that packed up over the weekend.  Elizabeth has been allowed to spend time with other family members over Xmas but leading up to this she was anxious – Elizabeth gets anxious when it comes to going somewhere new at first and she was also excited at the same time.  Everything went so well over Xmas and she came back really happy.

I think without doubt the MHA needs to be amended -the sooner the better.

Activities section of the Care Plan is all about Medication – the employees are not nurses/doctors yet Elizabeth is expected to discuss with staff ensuring she understands why she is being asked to take medication -staff to encourage Elizabeth to take medication – staff to explain the benefits and importance of taking medication for her mental wellbeing and recovery – staff to discuss any mixed feelings (ambivalence) she may have about taking medication.  Current Medication is Risperidone tablet mg at night –  YOU ARE NEGLIGENTLY IGNORING THAT ELIZABETH WAS PREVIOUSLY TAKEN OFF THIS DRUG.  HER BACK IS COVERED WITH A RASH AND SHE HAS BEEN TO THE DOCTORS AS SHE HAS BEEN SUFFERING FROM CONSTIPATION YOU ARE IGNORING ELIZABETH’S PHYSICAL HEALTH AND THE DRUG SHOULD BE REDUCED AS IT IS OF NO BENEFIT AND HER DIAGNOSIS FROM OTHER DOCTORS DISPUTES THE LABEL LOCALLY. LIVING WITH MH PROFESSIONALS FOR FOUR MONTHS – NOT ONE OF THEM THOUGHT THAT ELIZABETH HAD SCHIZOPHRENIA.    

The people who have entered the diagnosis details are new names who have not been involved in past care – don’t know if they are social workers and I cannot believe what inaccuracy they have documented and could prove it.  I am stunned by what I am reading here especially an entry dated 01 Jun 2017.  I am disgusted by the comments of multiple drug – this is not true at all.  The only people I could accuse of multiple drug abuse is Enfield Barnet and Haringey MH Trust and I have the files to prove it.  The diagnosis details are a pack of lies – she has never been alcohol dependent – there is some really disturbing things said by complete strangers who are not familiar with the case.  The comments I am reading are heartbreaking.  There is no reference to their own failure they have ripped to pieces my daughter’s character – how nasty can you get.

 “Elizabeth to remain and live at her 24 hr supported accommodation and engage with her support workers”  –  “Elizabeth’s mother or family not to remove her from the supported accommodation or terminate her tenancy without agreement with ENFIELD COMMUNITY MENTAL HEALTH TEAM.  This is hilarious “Elizabeth or her mother or family members to discuss any concerns they may have about her placement at supported accommodation with her care coordinator and community mental health team.”  YES AND THEY TOTALLY IGNORE US LIKE WE ARE DIRT AND WE HAVE BEEN TREATED LIKE DIRT BY THIS PARTICULAR TEAM (ENFIELD COMMUNITY REHAB) .  If she refuses medication staff at ………………….. to report for intervention.   So the accommodation is provided by ENFIELD CCG and Local Authority at £551 per week  – personal budget of £244.44 pw  but I suspect this could much more than this – more like £2000 per week because there is care on top in the form of support workers and what about the drugs.  If you total it all up the actual figure is far more.

To begin with after so long on acute wards Elizabeth found it hard to settle in the community at this scheme.  There was no water or toilet facilities running when she arrived.  She was the only person at this new scheme with one support worker who I thought was brilliant but they got rid of her.  Elizabeth has been advised to attend their centre in Park Avenue but Elizabeth has said “I don’t want to attend I prefer to do my own activities and don’t want other activities to be imposed on me. She has never heard voices yet this is recorded in the report.    It is clear on reading this report that it is NOT my daughter who has the personality disorders and all these labels –  what is wrong with these people who wish to bully, rip someone’s character apart in such a nasty defamatory manner.  How would they like it.  The Past History is completely wrong and has not been amended.   They have failed to monitor Elizabeth whilst on Clozapine as she had stopped smoking when she came home.   They failed to check the file records otherwise they would have noticed that she was allergic to this drug.   Nearly everything is reported wrongly and totally negative.   If the doctors and team were to include and liaise with the family I would not be so unhappy but when you read such comments it is really disturbing and when someone else from another team picks up the file records they are totally misleading.  I wish they would get things right but the mistakes and errors in what I am looking at right now are unbelievable.

It is bad the way people like my daughter are treated.  They are treated like they are sub-human/objects and at the age of 31 no front door key has been provided.  It is absolutely degrading.   She is treated like a child but it is better than a prison locked ward facility full of distressed patients not getting the right care. However as she has no furniture we have ordered her some and have been told by the care coordinator that we will not be reimbursed a penny.   We were told to cancel the order by the owner, the manager of the scheme and care coordinator.    But it cant be cancelled.  We did not just go ahead without asking in the first place.  Why is there no communication.   I am just completely ignored like I am invisible.   The team only contact Elizabeth’s and do not speak to me or include me at all.

I often wish Elizabeth had stayed in Australia rather than come back to this Country who treat vulnerable people terribly.  Sadly I am not alone.   My experience is echoed by so many nationwide who are trapped either in prison-like hospitals or dumped into the community or prisons without proper support or understanding and a CTO is not meant to be restricting but it is –  it is saying “we are providing the accommodation – we are in charge of you – you do as you are told or else –  all about medication not about care and the right kind of therapy or choice –  There is no mention of the many things that have gone wrong under their care –  there is only negativity and appalling labels of no scientific meaning.  There are scathing attacks on my daughter behind her back in the most nasty manner.

A CTO is like a prison sentence – it is State punishment, incarcerating and controlling people so they have no choice in where they can live – deprived of liberty.  They can be bullied by staff with threats of being forcibly returned to hospital if they do not take medication or do as they are told.  It is about treating disabled vulnerable people in a degrading, undignified manner like second class citizens – treating adults like children.     It is all about business and profitable too as a scheme such as this can cost thousands per week.    There are two other residents at this scheme and support workers who are there night and day who learn about prescribing etc on line.

I hope that the law concerning DoLs, CTOs and Nearest Relative is reviewed – the current MHA is not fit for purpose and needs urgent amendment in my opinion and that of many others I am in touch with.   A CTO is degrading and restricting and a new approach is needed.   The amount of money that is wasted on taking the NR to court rather than communicating properly and bothering to work together in an open manner.  To deprive someone’s liberty is the most disturbing thing of all and something needs to be done about it.

The court system is geared in favour of the Professionals who are giving harmful treatment which should only be used in the first instance in extreme circumstances.

The reason we cannot accept any diagnoses through ENFIELD MH is simply because these have been used to cover up the most terrible abuse to my daughter under their care by “treatment” of drugging enormously and I objected to the Council’s Nominal NR having read her report not just going back to 2010.  I gave substantial evidence in court.

So you are forced to delegate the role of NR rather than face enormous costs in court.  Where is the justice?   especially if the NR has a good point as to why the Council would not make suitable NR.

 

 

 

 

 

 

 

 

 

 

 https://youtu.be/L4X4VBaRJHk  – Just to update this is the link to the wonderful Better Mental Health:  The Beyond Words Approach.

I attended the above conference held at Royal College of Nursing last Thursday along with Sandra Breakspeare (Chy_Sawel) – Cornish for ‘House of Health’  and  another mother, Margarita who also wishes to see the right kind of care provided which unfortunately is not available in the UK.

Following a welcoming speech by Emeritus Professor Tony Butterworth CBE FRCN we  watched a video on the RCN Foundation, including interviews of nursing professionals.

The RCN Foundation is an independent charity set up in 2010 to support nursing staff to improve the health and well-being of the public.

www.rcnfoundation.org.uk

https://scadmin.rcn.org.uk/-/media/royal-college-of-nursing/documents/publications/2014/march/004602.pdf

Professor Tony Butterworth then invited Baroness Sheila Hollins – Emeritus  Professor of Psychiatry; St Georges University of London; Chair, Beyond Words Crossbench member, House of Lords; President Royal College of Occupational Therapists to present her speech on Learning Disability/autism and about effective means of communication with those who have such conditions.

“Listening means paying attention, wanting to understand, to value, to respect, to ponder what the other person says.

Knowing how to listen is a gift which we need to ask for, then make every effort to practice.”

How true this is.

“learning to listen to non-verbal communication, observing pain and anxiety by facial gestures, body positions, sounds.  Baroness Hollins mentioned her son who has Learning Disability/autism.  She spoke of gaining consent without words, to watch for  changes in behaviour and how attention should be paid to environment/comfort/safety and to make necessary adjustments in order to dispel fear and gain trust.

Baroness Hollins spoke of STOMP (Stop over-medication of people with Learning Disabilities).

http://www.challengingbehaviour.org.uk/learning disability-assets/stompfamilycarerperspective210517.pdf

  • Improve understanding of non-drug treatments and support which may help.
  • Make sure people only receive drugs for the right reason and in the right amount.
  • Improve understanding of when they should/should not be used.
  • Empower people with learning disabilities, autism or both and their families with the right information and support.

http://blog.rpharms.com/england/2016/06/02/stop-the-over-medication-of-people-with-learning-disabilities/

https://www.england.nhs.uk/2016/06/over-medication-pledge/

http://www.bbc.co.uk/news/health-33526166

It is a difficult campaign – there is no evidence that giving drugs helps

The drugs have not worked for Elizabeth.

Evidence for pictures is strong –  illustrated books re communication:

  • Supporting understanding through pictures was found to resolve difficulties in decoding words.
  • The pictures helped activate background knowledge, reflect and make predictions about what might happen.
  • A single channel of communication enhances both emotional and factual understanding and this is  really important

Picture narrative (as used in wordless books) is easier to process than:

  • Illustrated written information (as used in ‘easy read format’)
  • auditory or written information

Beyond Words have published 60 books telling health and social stories entirely in pictures.    https://booksbeyondwords.co.uk

Communication barriers  some patients have experienced were listed in the presentation:

  • using long words;
  • being asked questions they cant answer;
  • not listening;
  • overload;
  • not clear;
  • jargon;
  • memory;
  • unfamiliarity;
  • complexity;
  • anxiety;
  • fear;
  • time;
  • strangers.

Consequences of reduced access to good healthcare for people with intellectual disabilities and/or autism are:

  • Higher rate of avoidable and premature mortality than general population;
  • Higher rates of adjustment disorders and depression

 

A brilliant Empathy underpins everything:

  • relational aspect of the clinician/patient encounters
  • treating every patient with respect

there is much too little research in learning disability”

A really interesting presentation by Baroness Sheila Hollins which I could associate with and I wish my local area would take her approach.   Whilst I agree relationship with the treating clinician is important unfortunately so far we have never had a good relationship with local clinicians who do not wish to listen and ignore other professional opinion.   Hopefully Dr Ilyas Mirza will be different.

After the conference I spoke to Baroness Hollins and Professor Butterworth and shared our experience of care in Enfield and mentioned my story ” get-her-back-we-are-paying-for-that-17-05-15 “.

I mentioned I had found excellent care through http://www.working-to-recovery where she stayed with MH professionals of many years experience.  Elizabeth travelled from Scotland to so many wonderful places such as Bilbao, Carcassone, Marseille, aix en provence, Lyon, Paris (for the World’s Hearing Voices Congress).  In Paris Elizabeth stayed on a house boat and then to Caen, back to Glasgow to catch the flight via Dubai to Australia where she had Elizabeth had the opportunity to work with international MH professionals which included therapy such as music/art and psychotherapy.  The MH professionals concluded “we believe the more we get to know Elizabeth there are learning difficulties.  She needs to do everything slowly and will need some support for quite a while”.  Working to Recovery have recovery houses in Australia where professionals work with people through therapy not drugs.  I wish there was such a facility in the UK as we saw amazing results when Elizabeth returned to the UK. This care cost a fraction as compared to  Cygnet and Huntercombe prison type facilities and was very positive experience for Elizabeth resulting in enhancing confidence.   Not only have the private MH professionals feel that Elizabeth had a LD, Huntercombe assessed her as having high functioning Aspergers but they have so far not released the report despite repeated requests and consent.  Elizabeth is entitled to see this and was entitled to also see the report stating complex PTSD when she was at Cambian in Wales.

I mentioned to Baroness Hollins of our experience locally and how Elizabeth has not had a proper assessment independently however was found to have full capacity recently.

My local area (Enfield) have over-drugged Elizabeth but so has the Royal Bethlem Hospital (National Psychosis Unit) where  “its all about Clozapine here – you should have done your research”.  Despite an Advanced Declaration which was ignored The Royal Bethlem gave Metformin together with Clozapine which is contra-indicated. I was banned from visiting and was threatened with arrest when I found out, by staff who wore name badges back to front.  Here is the Medication as listed in the files:

  • Clozapine liquid 150 mg BD (level 0.37 on 3/7/12
  • Bisoprolol 1.25 mg OD
  • Metformin liquid 500mg TDS
  • Multivitamin T OD
  • Aqueous cream
  • ADcal D3 1 tablet BD
  • Omega 3 fish oil T TDS
  • Lorazepam 1-2 mg BD PRN
  • Promethazine 25-50 mg BD PRn
  • Olanzapine 10mg IM OD PRN – this was raised to 30mg

During titration of Clozapine Elizabeth developed tachycardia.    She experienced  dizziness whilst starting Clozapine.  she was noted to have a raised eosinophil count.

Quetiapine XL 750 mg ON – decreased to 600mg 20.04.12

It is not true as stated in the files that  “Clozapine was helpful”  – I can get so many witnesses to say the contrary and that in fact it caused injury.  IT WAS AGAINST HER WISHES TO BE PUT ON THIS – SHE LOST CAPACITY AS STATED IN THE FILES AND THAT IS WHEN THEY TOOK ADVANTAGE.

Cambian in Wales continued with this drugging regime until I queried with the GP in Wales about the Metformine and he did not know what it was being prescribed for but I found out that this should only be prescribed by an Endocrinologist so obviously they found something physically wrong and I spent a lot of money on tests privately which proved my point.

Private mental health experts we paid for through “Working to Recovery ” discovered LD and complex PTSD.  Huntercombe (high functioning Aspergers).  However I would disagree with them that an ATU is the right place for Elizabeth.  I believe a therapeutic community or care farm is the right environment but Elizabeth has been placed in the community not far away from home.

I took the opportunity of speaking to both Professor Butterworth and Baroness Hollins about the degrading treatment Elizabeth has had in Enfield and other private institutions.  I do not think that Elizabeth has not seen a second opinion doctor despite there being huge conflict of opinion on diagnoses in the files.

All Elizabeth needs is kindness and understanding and all she wanted was friends which she has gained by being back on the wards and they come and visit her.  Everything that Baroness Hollins spoke of made sense to me.  Elizabeth has had brutal treatment under so called “care” by professionals – where is the evidence she has “Emotionally Unstable Personality Disorder” when it should be “complex PTSD just like Dr Bob Johnson states in his report for court purposes.  Elizabeth has the condition of “Selyes Generalised Adaptational Syndrome – sustained stress caused by Endocrine disruption.  How true this is and I have proven through Endocrinolgy tests everything.  I have also had the P450 liver enzyme tests done.  I showed them the test results to Professor Butterworth and gave him a copy of the results that state “poor/non metaboliser” .  I also told him that I had recently spoken with Professor Pirmohammed who said that these tests will be widely available under the NHS in the near future although I spoke of very urgent cases I was in touch with who need the tests sooner rather than later ie those being held “prisoners” and drugged at enormous levels in institutions.   Instead of wasting money on private “prisons” and ATUs there should be investment in research on drug adverse reactions and these important P450 liver enzyme tests allowing the lowest dosage of drugs to be prescribed to avoid adverse reactions regardless of whether someone has a learning disability or MH condition.  Such funding should be given to Universities such as Liverpool and Lincoln where Professors are doing important research.   Less drugs should be prescribed in accordance with guidelines -The Mimms Handbook of Psychiatry advocates the use of the lowest clinically effective doses of anti-psychotic medication to avoid adverse effects.  The dose should be carefully titrated to provide optimum balance between good clinical improvement and the fewest side effects.   Elizabeth suffered involuntary muscle movements, tremors and neuroleptic malignant syndrome on Clozapine whilst at home – neurologic toxicity.

Whilst at the conference I also showed the petitions of Gillian Speke and Tracy Best as well as  the shocking pictures of Elizabeth Before and after “treatment”.  Attached to the petitions was a list of the drugs prescribed at huge dosage.  Something needs to be done about this.  Both were at Cygnet Hospitals but it is not just Cygnet who prescribed at enormous levels – there needs to be proper monitoring in this connection.

At Moti Villa Elizabeth was multiply abused and she is therefore a trauma victim and according to NICE Guidelines drugs do not work for Complex PTSD.  I would have had no objection to Section 3 if the right care was given such as:

  • Psychodynamic therapy
  • Psychotherapy
  • Eye Movement Desensitization and Reprocessing (EMDR)
  • Cognitive Behavioural Therapy
  • Group and Family Therapy

With regard to the latter I as a mother an excluded but we would have liked Open Dialogue but sadly it is a Post Code lottery.  Here is what my local area of Enfield under Adult Services have to say about Open Dialogue in their Annual 2016/17 Report:

“We have been investigating alternative models of mental health care since 2015 and over the last year have been trialling an approach known as “Open Dialogue”. Developed in Scandinavia it involves focussing on relationships and dialogue with family and friends rather than concentrating on symptoms which is the usual approach of traditional services.  Medication is still used although research to date has shown that it is not needed as much and that patients have better long term outcomes. 13 staff are being trained during 2017 over four residential training weeks.”    Well why haven’t we as a family been included in this trial.

Elizabeth has made some very nice new friends on the wards recently.   All that Elizabeth wanted was friends.  Whilst Elizabeth is placed under the current scheme on a CTO she did tell the team that she could not guarantee that she would stick to things in the community.  This is why CTOs are a waste of money.   One of the major issues is being forced to take drugs that should in fact only be given short term not long term according to manufacturer’s instructions.   The problem is that the local team will not budge on “paranoid schizophrenia – treatment resistant” and “emotionally unstable personality disorder”  –  I see this diagnosis as an insult when Elizabeth was  badly abused under the scheme Moti Villa as on CCTV which the police could not find. NOTHING WAS CONSENSUAL SO PLEASE STOP TRYING TO MAKE EXCUSES.

Elizabeth has not met her new Consultant Psychiatrist Dr Ilyas Mirza yet.  I doubt I will ever get to meet him as we seem to be excluded from the Open Dialogue trials.   Elizabeth was on 2mg of Rispiriedon – an anti-psychotic drug licensed for patients with Schizophrenia and Bi Polar.  Elizabeth has complained that the drug has made her feel very tired and in her own words “I cannot stand any more Mum”.  Elizabeth announced last week that she is no wishing to take any more of this drug but I advised her not to come off it without discussing things with her Doctor and negotiating a slow reduction like Dr Ann Blake Tracy mentions however Elizabeth did not listen.  So this coming Monday there is a meeting at her scheme that I have not been invited to.  Elizabeth wanted carers and therapists she is familiar with to attend this meeting –  I would have preferred her to come off this drug slowly but I think that this should be monitored by Dr Moncrieff and her researchers under the RADAR scheme.

Finally  Chy-Sawel (Cornish for ‘House of Health giving’ chy-sawel-project.co.uk is featured in “Cornish Christmas Giving Catalogue”.  Donations can be given via the website of Chy-Sawel (chy-sawel-project.co.uk).

“Chy-Sawel is Cornish for ‘House of Health giving’ which rather aptly describes the primary aim of the Chy-Sawel Project, to establish a ‘Healing House’ Treatment Centre that will provide respite from prescriptive medical practices.  Instead of a reliance on pills, Chy-Sawel hopes to improve mental health by utilising the latest advances in blood testing, alongside an holistic approach, encompassing a nutritious diet, practical activities, exercise, talking and creative therapies.  Helping get lives back.” 

Wonderful!  this is exactly what I and other mothers would like to see.  If only we can have this kind of care in the UK – much needed choice and also the recovery houses and unique humane approach of http://www.working-to-recovery in the UK based on the wonderful care that they provide.  We did not recognise Elizabeth when she came back from Australia.  Why cant this be provided in the UK instead of private prisons costing £13000 per week.

About the Speakers of the Conference “Better Mental Health – Beyond Words Approach”:

https://www.gov.uk/government/news/professor-tony-butterworth-cbe-confirmed-as-acting-chair-of-the-nhs-institute-for-innovation-and-improvement

https://en.wikipedia.org/wiki/Sheila_Hollins%2C_Baroness_Hollins

I thoroughly enjoyed the conference and your presentation.

I hope to come again to other wonderful events at the Royal College of Nursing and I would like to know if I can have the link to the recording of this sold-out conference to put on my website.

And finally to Baroness Hollins – I shall write to you privately –  I wish that more professionals would have such an understanding as you have in communication with those who have LD/Aspergers.

I don’t know what Dr Mirza will do about Elizabeth.  They might as well get rid of the CTO and instead give Elizabeth more therapy of the correct nature.   Baroness Hollins suggested RESPOND and I have previously asked for this.  I will keep you all informed.

 

 

 

 

 

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