Elizabeth is now in a community scheme. The residents are very nice but my concerns are for Elizabeth because she is being forced to attend meeting after meeting – Safeguarding meetings which is against her wishes. She has not had one advocate present so far which is appalling. Nothing has been provided at all for her to do in all […]

via MESSAGE FROM ELIZABETH — Psychiatric Abuse UK

Elizabeth is now in a community scheme.   The residents are very nice but my concerns are for Elizabeth because she is being forced to attend meeting after meeting – Safeguarding meetings which is against her wishes.   She has not had one advocate present so far which is appalling.   Nothing has been provided at all for her to do in all this time just like at home.    I drew to the attention of the scheme manager today the fact that Elizabeth needs help with cooking and storage of food.  Just like in the other scheme I have had to throw lots of food away and I think that this is a health hazard and I bet no mention of this is being made at the safeguarding meetings.

In her own words this is what Elizabeth has to say about it:

“I’m getting lots of meetings.  I wish I didn’t have all those meetings.  I don’t want to go to meetings every week. I definitely don’t want meetings pushed at me.  I just want a night out and I was planning to go to the shops.”

Today I got a call from Elizabeth to ask me to come round as she wanted to go out shopping.  Today is Saturday not Sunday – that says it all.

“The social worker was not very nice considering I wasn’t feeling well.  She was asking me about things.”

“I was not very happy with this meeting.  I need my Mum – she is helping me.  I am not wishing to take part in any more meetings”

The above message was typed by someone else –  Elizabeth does not type.   I don’t know who has typed this but these are not Elizabeth’s words.

Dear Mum

I will be grateful if you can visit me once a week only on Sundays so that we go to church together and give me my allowance as well.  I will prefer you call before coming to visit me at ………………………..”

Yours faithfully”

The above words are not Elizabeth’s words – she would never use the word “allowance” for a start or say “I will prefer you call before coming to visit me”.

My carer who is now banned from the scheme because he made mention about the microwave oven not being healthy – he  also got a message from Elizabeth that she wanted him to visit in order that they could go out this evening.   This carer is like part of the family – someone we all trust 100% and has provided help in the absence of any assistance or care provided by ENFIELD mental health over a period of more than 2 years whilst Elizabeth was home and I would add it was her choice to come home as she was unhappy at the care home in Northampton.  It was only when I went to the Council’s Scrutiny Meeting that suddenly the Consultant Psychiatrist got in touch.  I accused the Councillors of not doing anything when I was trying to get the chemical Clozapine and I had to go to Harley Street in the end on the fourth day having been told that I would not get the drug anywhere not from any hospital in the local area and to get her back to the care home as they were paying for it.  I of course refused as I knew she would be sectioned as a matter of convenience and they were trying to arrange the funding for this – extra money for the taxpayer to pay out.  This was exactly what they were all planning and all the time I offered to drive all that way to pick up the chemicals.   So I presented the meeting with my story called “Get Her Back We Are Paying For That” to the Scrutiny meeting.

I have spoken to the wonderful organisation Liberty that I have joined as I would like all my carers to be applauded and highly recognised for their wonderful support in the absence of any care at all over the past years.   There are others too I would like to mention and say thanks to and hope I will be chosen.   It was good to see such a turnout at Liberty’s AGM and I was really impressed by their last award ceremony.   I would welcome the chance to talk openly about the state of mental health care in the UK and I am in touch with the most shocking cases of abuse in the UK.   How on earth can all this be allowed to go on in a so called civilised country and none of it appears in the press.

I remember previously at a hospital, (they made out it was Elizabeth’s decision for me not to be allowed on the ward or to phone at an allocated time)  I was allocated a slot to have a supervised phone call once a week but this happened to be at a time I could not ring.  All this time Elizabeth was in touch with me by text message and the letter was written by a manager there who once looked on the floor in shame when I asked what she had against me and so did one of the doctors when I asked why she had been prescribed Metformine and Clozapine which are contra indicated.   There have been so many instances like this where Elizabeth has been treated not like a person but like an object – a possession and her wishes disregarded altogether whilst a team will do everything they can to discredit you – the family – or family member as in my case and go behind your back making you out to be a terrible person, someone who is abusive, cruel, hostile, aggressive, suffering from mental illness you name it!  They even try to put words in the head of a vulnerable person putting pressure on that person and worse of all try to carry out a mental health assessment on you using your GP and accuse you of being mentally ill.    I suppose that would enhance their argument that you are not a fit mother and therefore should be banned.

I want to tell you all that I do not visit the scheme during the week daytime as I work.  I am not there every second of the day.   I am not there to “interfere” as they like to say.  It is the team who are putting words in Elizabeth’s head right now, excluding the family once again and having constant secret meetings behind everyone’s back.  They play on confidentiality and use a vulnerable person like a tool to get back at you when they dislike you and from what I see from the files they certainly dislike me a lot  but it is all wrong.  These professionals are publicly funded and there is absolutely NO accountability as no-one likes to admit if something is wrong or apologise to you about the treatment of the family and person cared for especially when very serious things have happened under their care.  They are truly above the law, protected and untouchable especially some doctors – mainly psychiatrists who are a law unto themselves.

I want to tell you that Elizabeth is very upset about all of this and does not like all their constant questioning as to whether she is being abused by me or worse.   Then they make up their sorry notes and even the past history is wrong in the files.    It is not just myself but others in the family who have complained and I have so many witnesses as many people helped me when the Clozapine had to be retitrated from scratch involving team members coming into my home twice a day reporting back to the Community Rehab Team.    Elizabeth has since told me she was “persuaded” or rather pushed to continue these distressing meetings and that there are  further meetings planned next week and she has felt forced to go along with this and is not at all happy understandably so.   Why is there no advocate present?  This is so very wrong and in itself abusive of a team of professionals as Elizabeth is finding all of this very upsetting.

Safeguarding seems to be  a once- sided exercise where a team question and question and question –  they put pressure on Elizabeth to say things against people in the family especially me who they don’t like and afterwards she feels very sorry that she may have said one or two things and all of this is being recorded in their files behind our backs.  At least I am saying things openly and honestly here.   We have most of the files to see for ourselves what goes on. This is not care this is abuse by professionals to force a vulnerable person against her family and if a whole gang of professionals say things against you as a mother for instance then it is all very biased and unfair. Who is going to believe someone who is just a mother.   So Elizabeth has attended a Safeguarding Meeting  where at least   I bet there are many professionals are in attendance and not one single advocate.    Not a fair situation at all.  At the Bethlem there were 9 at a meeting and Elizabeth often did not feel well enough to attend.  One of Elizabeth’s diagnoses is Aspergers and no one in Enfield wishes to let her have an assessment and the other diagnosis is PTSD.  I’ve got reports and other professionals are being ignored here.   Surely under the Equality Act 2010 Elizabeth has a right to be treated fairly and have an Advocate present.

I wish so much there was Open Dialogue in the local area as none of this would go on and openness and transparency which would mean I could trust the people are involved in the “care”  – but unfortunately there is nothing like this in ENFIELD.

I wish to express my thanks to the Court of Protection for acting fairly in the past not just for my daughter but for my father who had Alzheimers.  I kept him out of a home for many years and provided carers to look after him too.    Elizabeth was so terrified of going to Court.  They wanted to sever contact and deprive liberty and force her back to a care home hundreds of miles away where she had no food at the weekend.  All is written in the files.   £30 to manage on and if the money ran out they she had to go without.  Elizabeth was in bed at 6.00 pm –  what kind of care is this?

Tomorrow I am taking Elizabeth to church and I am going to tell every single church about all of this abuse.  Let God be the judge of them all as it is not my place to as they like to judge me.  I know that members of a team just go along with things as they have bills to pay and families to support –  I personally could not work in such a profession that likes to tear families apart and treats vulnerable people in the most despicable way.  They make out they know the family but they do not know anything about the family at all and there are so many mistakes in the files you would not believe it.

 

 

 

 

 

 

 

 

 

 

Gaslighting is an attempt of one person to overwrite another person’s reality. Yes I’m afraid this does go on – I would also use the word “brainwashing”.

I am sad to say they are at it again – the team of ENFIELD Mental Health are holding lots of “safeguarding” meetings.   A vulnerable person like Elizabeth should never be put under pressure to attend meeting after meeting with no advocate present. There should always be an advocate present.  All this is happening to my daughter Elizabeth right now as, unfortunately, she is in the “care” of a scheme run by Craegmoor part of the Priory Group.  She wanted to be independent but there are more restrictions than ever before and when you pay for a tenancy within reason you should not be under excessive control – it is more like RESTRICTIVE SUPPORTIVE HOUSING THAN SUPPORTIVE HOUSING.  The scheme is a small scheme situated  just down the road from where I live and consists of six people.     Sadly, when Elizabeth came out from Cygnet on 20mg (one of the most highly dangerous drugs Elizabeth has been on so far) this left her unstable.  Abilify, is manufactured by Otsuka and they sent me an email when I contacted them saying this drug is licensed for Schizophrenia and Bipolar only and should only be given for 12 weeks. Well what about the other diagnoses.  What about if Elizabeth has been misdiagnosed which we all think she has been.  Elizabeth has suffered an adverse reaction on this drug which I have had to report.     It is all down to drug metabolism and the problem is that  Elizabeth cannot metabolise the drugs – that is the problem.  She is multiply diagnosed.

Anyway, I am so concerned as to what is going on right now that I am going to post this to everyone and I want everyone to know which area I live and that is ENFIELD – an area where we have encountered bullying by a team “professionals”.  I am proud to stand up alone against this.  I told my daughter tonight nothing will ever turn me against her.  Not even the nastiest comments that appear in the files.  Other parents should be aware of this tactic by so called “professionals” who do not like you, who act in such a way so as to try to distance/sever contact between you and the person cared for  instead of work together with the family under Open Dialogue.

Sadly we as a family would have benefitted from joining the Open Dialogue UK that has just been put into effect from 4th May through NEL MH Trust but I feel that we have been discriminated against by NHS using “red tape” by saying that we already had a team in place  – well what team?    For the past two years I have had to employ my own team as we have had no care whatsoever.  Care should not be about pushing drug after drug at maximum levels without review.    All I wanted as a mother was to have my daughter on the minimal of drugs but now I can see why they put it up to maximum levels in the hope that this blots out someone’s memory –  no one in the local area would wish to hear that something serious happened under a scheme in the community to my daughter because of lack of supervision and weakened by enormous levels of drugs more than one serious incident has occurred under “care”

Elizabeth is now living in a smaller scheme in the community run by Craegmoor (part of the Priory Group).   In this current scheme it is really designed for someone who is able to stand on their own two feet.  The only thing that makes me happy about this scheme is the residents.  There is a woman there who acts like a mother figure thank God.  I never see staff downstairs but their duties are to take my daughter to the constant safeguarding meetings.  It is a pity that after all this time since her admission on 17 May that not one thing has been provided for her to do and neither was anything provided for over 2 years at home .  I had to provide things for her to do out of my own pocket.

Just to let you know the family currently have had an enormous complaint out against Social Services ENFIELD and this has been “dealt with” by the NHS’s Deputy Leader of Quality.   We are looking forward to another meeting as our complaint has not been properly answered.,

We have Power of Attorney not just myself but other family members not because we wish to control Elizabeth’s life but because we wish to provide for her one day.  She has come out of the system disabled.  Even walking up the road to get shopping is an ordeal for her.  It is a pity this team under ENFIELD have not signed up to  Open Dialogue. Naturally I have no trust in professionals in this Borough because of reading the shocking contents of the files which label me as being “mentally ill” whatever that is?  You can also see how the team tried to set up a MHA assessment for me  through my GP –  I was too busy to attend.  I work, I have a busy life and combine this with caring for my daughter.  I am not with my daughter 24/7 but this is a team who do not seem to care for my daughter and who know nothing about the family.   They just want to control.   They have got past history wrong.  All Elizabeth wishes for is that everyone works together and gets along but this is a team who play on confidentiality to save their own backs.  I am satisfied that I am correct in saying this,  having read so many nasty comments in the files.  There is no accountability.  Most people would not be allowed to get way with this kind of behaviour.

I am so concerned of the recent developments that I feel I should make it public.

At the latest safeguarding meeting Elizabeth told me this evening when I called round with a new chip for her phone she told me she was put under such pressure at the SAFEGUARDING meeting where she is constantly taken that she does not want to go to any other meetings and she was put under pressure by the care coordinator to say the following in a typed letter that Elizabeth would not have done herself as she does not type and these are not her words in any case:

DEAR MUM

 

I WILL BE GRATEFUL IF YOU CAN VISIT ME ONCE A WEEK ONLY ON SUNDAYS SO THAT WE GO TO CHURCH TOGETHER AND GIVE ME MY ALLOWANCE AS WELL.  I WILL PREFER YOU CALL BEFORE COMING TO VISIT ME AT ………………………………

THANK YOU

 

YOURS FAITHFULLY

 

E………..

 

 

 

Elizabeth told me tonight she was “put on the spot”

I have said to her that what if I cannot come on a Sunday.  She then told me that she was put under pressure by the care coordinator accompanied by a member of staff from Craegmoor.

Elizabeth had hand written  a letter to the staff member of CRAEGMOOR reading as follows:

Dear F…………. (not sure how to spell)

“I WAS NOT HAPPY WITH THIS MEETING .  I NEED MY MUM  – SHE’S HELPING ME. I AM NOT WISHING TO TAKE PART IN ANY MORE MEETINGS.

THANK YOU.”

Elizabeth’s own words.  Take note team and especially care coordinator.

 

I think they may be trying to ban me and I will keep you all informed.  THIS IS NOT WHAT ELIZABETH WANTS AND NEITHER IS IT HELPFUL TO HER.

We have had all of this in the past from Cambian and now this is going on at Safeguarding Meetings and witnessed by a member from Craegmoor – how nasty can you get!   Elizabeth did not type this letter herself.  The wording is not coming from her.  If she did say once a week she was put under pressure and it is DISGUSTING THAT ENFIELD MENTAL HEALTH ALLOW THIS KIND OF THING TO GO ON.

So our complaint (not just mine by the way) is about the care coordinator who has failed to provide any “care” and neither have social services.  They prefer instead to work against the family trying to destroy us all like they have done in the past.   What kind of people are these who work in what should be a  “caring” profession?

I have had to complain recently about the lack of communication leading to Elizabeth being given wrong dosage of drugs at 20mg and not 10. Apparently the care coordinator based at Silver Street ENFIELD does not like to use emails and neither does the Consultant Psychiatrist but instead of sending a letter to Elizabeth they should have copied in the tam at the scheme.

Anyway back to the meeting today, Elizabeth was very upset as she had been put on the spot.  She is multiply diagnosed but I am currently challenging ENFIELD who just do not wish to pay for proper assessments, choosing to ignore the fact that Elizabeth is multiply diagnosed and I have been asking about this for some time now.  There is more than one diagnosis I can see in the files and Aspergers is one of them.   It is absolutely disgusting that ENFIELD do not wish to provide such assessments so I have contacted the National Autistic Society regarding this and I also feel that she suffers from PTSD.

 

When I visited tonight I asked Elizabeth what she had eaten.    “just a few chips”.   She is likely to go downhill and that is my one complaint.   The mistake in the dosage of medication I would put down to lack of communication from the team at Silver Street as they write letters and do not inform anyone.   If they had properly informed staff at the scheme then this would not have happened.

We as a family are cut out completely and I can see this is AGAINST NICE GUIDELINES.

I think that NICE Guidelines should be enforceable to some extent as it would appear that no notice is taken of them.

The manufacturers of Abilify state clearly no more than 12 weeks on the drug.  Elizabeth has been on this for much longer. and all they have done is change the toxic red dye drug of 10mg that causes tumours in mice and rats to a white tablet again of 10mg.

I feel that Elizabeth would be kept on this drug for life if she is left under that scheme.  At home the team did not wish to revise the drug Clozapine that caused her tongue to go to the back of her throat.

Anyway, it is a good job that I as a mother look into the ingredients of these chemicals thoroughly and am also constantly looking into where there is better care and guess what I HAVE FOUND IT!   I shall keep you all informed as I’m trying to get funding for this..   If it is a manufacturer’s guideline that you should only be on a chemical for 12 weeks as Inspector Brown would say “WHAT THE HELL IS GOING ON” – Sorry for pinching your title Inspector Brown but it is so appropriate for my honest blog.

At the weekend I enjoyed attending Liberty’s AGM.  I really hope I get chosen for my Award nominations  as this will give me a chance to discuss the most shocking abuse going on in the UK to MH and vulnerable people.   Yes, I am in touch with even worse cases.   Good to meet you all at LIBERTY and I support all of your campaigns.  I will be more than happy to help if I can.   I would also be prepared to be filmed and hopefully people will really take notice – there is more than one Winterbourne and I want to bring all this to the public’s attention.

When I called to see Elizabeth tonight she was feeling a bit low.  She can easily get agitated but Dr Joanna Moncrieff has explained to me to say that the drug Abilify is noted for causing Anxiety and Agitation and I remind myself that this is the drug and what it is doing,  not Elizabeth’s character and I said to her today that nothing would ever destroy things between us even if the team have prompted her to say nasty things.  I KNOW WHAT IS GOING ON TEAM –  PLEASE ALSO DO NOT TRY TO ARRANGE ANY MORE MHA ASSESSMENTS VIA MY GP.  I am seeing my GP tomorrow and I will tell him now that never will I attend such an assessment in a million years.  Someone who is a professional said to me that perhaps they should do an assessment on themselves and I could not agree more.

Other people in my family and my carers would like an apology for being called “aggressive” “hostile” –  I have been called a prolific complainant – they failed to name me as “vexatious” .      It is cowardly to label someone behind your back and I would welcome an open discussion with team members on TWITTER in front of everyone.

When I left tonight after seeing Elizabeth she was smiling and happy.   Elizabeth needs help at the moment but hopefully she will be able to get on with things herself one day.   –  there is nothing more controlling than a group of professionals who instead of providing help and support are holding SAFEGUARDING meetings no doubt for the purpose of cutting contact no doubt but now Elizabeth has written in her own words.  This is not a typed letter written by someone else – this is coming from her in handwriting and no way on earth could I have ever forced her to write it:

Dear F…………. (not sure how to spell)

“I WAS NOT HAPPY WITH THIS MEETING .  I NEED MY MUM  – SHE’S HELPING ME. I AM NOT WISHING TO TAKE PART IN ANY MORE MEETINGS.

THANK YOU.”

If all that has been done was  meant to destroy the family I am afraid they have brought the family together –  this is because of all the nasty things that have been said for all to see in the files.

Tomorrow I am going to vote and hopefully take Elizabeth.  According to the letter it says every Sunday!   Just like at Cambian –  phone calls – restricted to once a week – not that I used to phone every night but at a time that I could not call anyway.     How very sad that a team of “Professionals” resort to this kind of behaviour and I understand that my emails have been called “annoying” by the care coordinator.  It could be because I know how to communicate effectively and the best way is to copy everyone in so that everyone knows what is going on.

 

 

 

 

 

 

Today I attended this meeting and took with me file papers – not all as I have huge quantities.

The whole treatment of my daughter Elizabeth and what brought her under services in the first place I hope will be a warning to others.  Those who do not know anything about mental health services and “care”.

It is incredibly easy to come under mental health services and be labelled yourself by a team of professionals who may not happen to like it if you dare to stand up to them and disagree like I have done.

As not one single complaint has been dealt with fairly and I have seen how such complaints are dealt with – internally by those same people who the complaint is about would you believe.  They investigate themselves.  Whereas other people in private sector firms are more likely to own up to anything that is wrong that is not the case under public sector mental health care whose professionals are above the law but not above God thankfully.  I definitely believe there is a God who gives me the strength to stand up against what I would call bullies.

I have read some disturbing things in the files about me that I am considered to be mentally ill and I have been told today that no way can these comments be retracted once they appear in the files however an amendment can be made.   This is one of my complaints that has not been dealt with by the Chief Executive.  I have just noticed that they wanted to do a MHA Assessment on me –  what on earth is going on!   Despite everything I keep going in my life such as it is and I am not on any drugs and because of my bad experience I would not wish to see any doctor other than my local GP.    So they were trying to arrange a MH Assessment on me through my former GP but I never heard anything about an appointment.

I showed the investigator loads of pages of comments and conversations between members of staff trying to call me a vexatious complainant but they could not and had to make do with prolific instead.  This is all so disturbing when like I say no complaints have been properly investigated.

I will tell you all now what my main complaint has been and that is the over-drugging of my daughter that has led to tachycardia and tardive dyskinesia.  She has had a very bad reaction to a drug recently and is now living in the community.  She is nearby to home but today I have had to write my concerns that medication has not been given correctly and was subsequently reduced – it was the higher dosage that caused terrible problems.  I feel justified in complaining that Elizabeth’s physical health has deteriorated due to enormous amounts of concomitantly prescribed drugs.  Imagine being on 800mg of Quetiapine living in the community and expected to engage with staff – on this level of drugs how on earth can anyone function.

So the investigator told me that she could not discuss much with me as she did not have the consent –  this is something the team like to play on however I am more than happy to prove this is not the case at all legally and we as a family are all together despite the way professionals have tried to tear us apart and I can provide documentary proof legally.   My area is a prime example of where the system is completely wrong.  There is no transparency, there is no accountability or openness or honesty.   If my area adopted Open Dialogue then I would take a different view and there would be hope of better communication and fairness to all.   It is very harmful for someone like Elizabeth to be pulled in two directions by professionals who wish that person to choose between Mum and Dad or else have nothing to do with Mum because she is someone whom the team do not like.   When I took Elizabeth to see a leading Hypnotherapist in Harley Street she said it was “outrageous” what these professionals were doing.

The investigator said she would do the response in just two weeks but I did not have time to go through everything with her thoroughly and feel she needs to hear from the many witnesses who stepped in to help me in the absence of any care whatsoever over a period of more than two years.   However I made a point of saying that I would provide any proof she needed that I along with other family members do in fact have consent legally and in the meantime, I have told her to put her response on hold as otherwise such response is likely once again not to be satisfactory in covering the very serious point we discussed today that have NEVER EVER been addressed other than by the words “satisfactory” or “excellent care”.  I would say “far from it”    I showed the investigator the legal papers “Deprival of Medication – Community Care”  .   When I wanted to include some of my loyal carers this was not acceptable but there were many who wished to come along in support.    A meeting only last week was abruptly cancelled without any of us knowing and some people had come a long distance to support Elizabeth and were disappointed they could not attend.

With Bank Holiday coming up I just want to get right away from here.  I hope the weather will be nice as I want to get out of London.

I am seriously thinking of moving now to an area where open dialogue is up and running then perhaps we can be included rather than excluded and we could all be happy then.   Open dialogue done properly like in Finland is the way forward and Elizabeth was talking freely to the professionals from other areas, some of whom were in tears.  It is good to have openness and transparency.   I know there are some decent professionals out there who do care but there are also plenty who are extremely ruthless and uncaring who write very nasty things behind your back thinking you will never be able to get hold of those files but now all is revealed.

Other family members have moved away from my local area and I hope and pray that Elizabeth will get the opportunity to move to an area where she can be near to other family members and where professionals do not seek to sever contact, deprive liberty etc but behave in a decent and kind manner.

 

 

 

 

The message below was written by Dr Russell Rassaque as I was making enquiries whilst Elizabeth was in Cygnet Private Hospital.

” Our Open Dialogue service is not taking new local referrals and does not work in an in-patient setting yet either or with anyone on section. It’s just starting and we are slowly bringing it online step by step.

The best thing I can suggest is that from May 4th we will be taking new referrals from people outside our local area (anywhere in the UK outside our own boroughs in N,E, London). However, new patients will need to be referred through primary care after discharge from the local service. If you’d like to pursue this please can you email my colleague Cathy Thorley who will manage this new arm of the service on; Catherine.Thorley@nelft.nhs.uk

She will be able to discuss it with you in more detail and how to get referred (without moving – in fact, it help if you stay where you are). Hope that’s ok and, if all works out, perhaps seeing you after May of this year.

Wishing you all the best”

 You can imagine how overjoyed I was at hearing that open dialogue was being extended to include everyone and I would have been prepared to travel to the two locations that North East London hold meetings at.  I was overjoyed at the prospect of being able to have more frequent meetings but most of all that once transferred we would be working with professionals in an open and transparent way.  No more exclusion and playing on confidentiality/capacity but working together as a team.
I had been in touch with Cathy Thorley several times and found out that you have to go through your GP for this service and once Elizabeth was released we did just that.
Unfortunately I received a response from Cathy Thorley to say that we would not be considered to be suitable for transfer to this scheme as we already had a team involved of mental health professionals.    What a joke this is –  I told her that for the past two years + we had no support from local professionals in my area of ENFIELD MENTAL HEALTH – at least there was no one we could trust as we had seen all their nasty comments and what they were doing behind our backs.  How can you trust people like this and it is a pity that ENFIELD are an area that are not considering Open Dialogue as this could vastly improve everything in an area where care has failed.
So, disappointingly we are not considered suitable –  it would seem only a selective few would be considered suitable for Open Dialogue UK.  Not what I expected and we could have worked so well with professionals that we trust.   As Dr Bob Johnson says “Truth Trust and Consent”  – this is what is missing within the UK’s mental health system. It would seem that the only way you can be included in Open Dialogue UK is to move to another area where they are wishing to improve the failing system of mental health care and if every area was to adopt this attitude then there could be more success.
I know it is early days for this system of Open Dialogue and many professionals are stuck in the dark ages and not willing to move with the times – pity as when we were associated with being in crisis, I did not see things this way.  Elizabeth had come out from Cygnet, not on a section but was on a new drug Abilify and if we had seen psychiatrists from another area we have received fairer treatment.  I suppose it is all down to red tape and funding.
Much has happened since then and we had Elizabeth home for a month or so on 20mg Abilify but sadly she was not the same person any more.   Without a care plan or any help or support from professionals in my local area ENFIELD, I tried my best to find counselling but the kind of counselling I was trying to get for Elizabeth was completely overwhelmed with demand and there was a waiting list.  There was the problem of getting someone suffering from Agoraphobia to appointments and I was desperately thinking who could take her – planning to put one of the carers on my driving insurance as I work full time.
So much has happened, some of it too painful to write here but if we had received support rather than the approach we encountered from professionals the current situation would not have arisen as there needed to be extra assistance.    It seems like money is available to spend on private care providers who run supportive housing schemes rather than give a bit of help which would have been much cheaper to the family.   Housing benefit is not payable to a family so there is huge savings if someone remains at home but various providers apply for these benefits in order to provide their services.    Some are good – some are bad.  I look forward to reporting more as time goes on.
Elizabeth is now 29 and for the past month of being at home she was refusing to go out, was not feeling at all well on the drug Abilify at 20mg.  Sadly Elizabeth is not now living at home – the drug Abilify is a very highly dangerous drug and Elizabeth is a poor/non metaboliser of such drugs.  This has nothing to do with so called mental illness.   Elizabeth is not in hospital but in a scheme with others.  It is too early to comment on this scheme but already Elizabeth is not living so well under this scheme.  I have visited her a few times and seen that diet is slipping, others smoke and basically it seems like they are left to get on with it.   Like I say,it is too early to comment but there is not many young people there at this scheme and that is something that Elizabeth wanted I know for a fact.   I am paying for private psychotherapy as nothing is provided.
Anyway, we have a meeting on the 24th and it is not just me who will be complaining at everything that has happened over the past years. I also will hopefully meet someone else that same day – someone who has come over from America and has a tight schedule but has agreed to see me.  Cant wait to meet her and hope that something good arises out of this meeting.
The kind of care most parents would like to see is emphasis on healthy living.  Diet is so important but not enough support is being given for people like Elizabeth to cook healthy meals and they are instead left to buy takeaways or smoke for instance.  Environment is so important and a natural environment with alternative therapy available and counselling/psychotherapy- one to one support for those that have come straight from hospital instead of just being left to get on with it and ending up back on the wards.  Peer support and inclusion, open dialogue.  A team of professionals who work with not against you and who are open and honest in their approach.   If only we had something like this in the UK but unfortunately that has not been our experience so far.
I hope projects like Chy_Sawel and similar can be set up and I am looking forward to this important meeting to take place on the same day as the hospital meeting.  Finally, Enfield Mental Health are looking at our complaints externally and I am bringing with me the shocking files.   I would be most surprised if anyone could get away with saying SATISFACTORY OR EXCELLENT CARE after reading the contents and comments therein.

 

CHY SAWEL EVENT WITH ROBERT WHITAKER AT LE MERCURY RESTAURANT 13.05.2016

ROBERT WHITAKER SPEAKING AT CHY-SAWEL EVENT (see link above)

HELD ON FRIDAY 13TH MAY 2016

HOSTED BY LE MERCURY RESTAURANT

154 UPPER STREET,  ISLINGTON, LONDON N1 1RA

10.00 am – 4.00 pm

For more information and bookings:

Contact Sandra Breakspeare –  info@chy-sawel-project.co.uk

01736 795748 or mobile 07814489701

Abilify Tablets are available in 2 mg, 5 mg, 10 mg, 15mg, 20mg and 30mg strengths.

Inactive ingredients include:-

Cornstarch (I wonder if this is from GMO corn!)

Hydroxypropyl cellulose (OK as in most natural supplements)

Lactose Monohydrate

Magnesium Stearate

Microcystalline cellulos  (OK as in most natural supplements)

NOW FOR THE BAD NEWS:

Colorants include ferric oxide (yellow or red)  –  Elizabeth has red tablets at 10mg strength. 2 x 10mg must be taken per day and Elizabeth has complained of not feeling too good on this amount of drug.   At Cygnet private hospital to my dismay the consultant psychiatrist raised the drug to 20mg and Elizabeth has complained of numerous side effects which I will tell you about later. Anyway to continue with the ingredients and colorants:

FD & C Blue No. 2 Aluminium Lake  –  this is a poison deliberately introduced into the drug so I believe.  To combat this it is a good idea to use Magnesium citrate in order to take out the aluminium that can affect the brain.

JESUS -N/a tartrazine  FD&C Yellow Aluminium Lake is a chemical concoction drived from coal tar.  It is known to be a reproductive toxin.   All artificial colours contain Aluminium Lake so when someone gets to choose between red, blue or green medicine they are really choosing which poison they get to consume. Several chemically enhanced food colourings contain ammonia and therefore produce compounds proven to cause various cancers in animal studies according to CSPI, the Centre for Science in the Public Interest (http://www.cspinet.org/reporyts/chemcuisine.htm):

Damaging Actions:

Blue //1 –  Research shows it  causes kidney tumors in mice.

Blue // 2 – Even higher incidence of  tumors specifically gliomas in  male rats – (a type of tumor that starts in the brain or spine)

Red //2 – Toxic to rodents even at modest levels and causes tumors of the bladder.

Red// 3 FDA recognised it in 1990 as a cause of thyroid cancer in animals. It was  banned in cosmetics but still allowed in food and medicine.

Red//40 – Most popular dye of all. Debilitates the immune system in mice .  Allergic reactions common.

Green//40 Causes bladder and testes tumors

Yellow//5 Affects behaviour and induces severe hypersensitivity reactions.

Yellow //6 Causes adrenal tumors in animals.

 

Aripriprazole is a psychotropic drug that is available as ABILIFY (R) tablets.  ABILIFY DISCMELT (R) orally disintegrating tablets, ABILIFY (R) ((Aripriprazole) Oral solution and ABILIFY (R)  injection, a solution for intramuscular injection.  Inactive ingredients include acesulfame potassium, aspartame, calcium silicate, croscarmellose sodiuim, crospovidone, crème de vanilla (natural and artificial flavours), magnesium stearate, microcrystalline cellulose, silicon dioxide, tartaric acid and xylitol.   Colorants:  ferric oxide (yellor or red) and FD&c bLUE nO. 2 aluminium Lake.  Abilify oralsolution is a clear, colorless to light-yellor solution which includes disodium edetate, fructose glycerine, dl-lactic acid, methylparaben, propylene glycol, propylparaben, sodium hydroxide, sucrose and purified water. The oral solution is flavoured with natural orange cream and other natural flavours.

ABILIFY injection is available in single dose vials as a ready to us 9.75 mg/1.3 mL (7.5mg/mL) – clear colourless sterile aqueous solution for intramuscular use only.Inactive ingredients for this solution include 199.5mg of sulfobutylether b-cyclodextrin (SBECD) , 10.4mgof tartaric acid, qsto pH 4.3 sodium hydroxide and qs to 1.33mL of water for injection.

SIDE EFFECTS OF ARIPRIPRAZOLE (ABILIFY) – GET EMERGENCY HELP FOR SIGNS OF AN ALLERGIC REACTION – HIVES, DIFFICULTY BREATHING, SWELLING OF FACE, LIPS, TONGUE OR THROAT.

Elizabeth has complained of strange pains in her arms and said she does not feel well on this chemical at 20mg. I have therefore written to the consultant psychiatrist.  Elizabeth is not due a review until June but what happens in my local area is that they ignore the family.   A letter addressed to Elizabeth marked Private and Confidential was not known about immediately and a date was given for Elizabeth to attend the clinic in Silver Street Enfield.   None of us knew until the last minute when we found the letter on the floor of the living room.   Therefore we could not arrange at such short notice to bring Elizabeth who suffers from Agoraphobia to this appointment.  One of my carers have been in touch to rearrange it but has not heard anything yet.  Elizabeth gave consent for close family and friends to be involved but this is an area who are plodding along in the usual way, whereas other areas under wish to see change and that change in the system is about to happen.  I will tell you all about it in my next blog.

Anyway, unless we as a family and my carers are informed then there is no way that Elizabeth will attend their clinics and besides the consultant psychiatrist should visit home in the circumstances.  The last time the consultant psychiatrist came to my home  he spent a long time looking at the results from Holland.  These are accurate lab results from the world’s leading expert in metabolism and because Elizabeth is a non metaboliser of these chemicals what we have seen in the past is allergic reactions and besides anyone would have a reaction on the huge amounts of drugs that she has been given by my local area.   Surely this is against prescribing regulations/recommendations.

Elizabeth’s Progress and Reflection on her care to date:

When I went to pick Elizabeth up Cygnet Hospital approx. 3 weeks ago now she was very nervous about going outside and even getting into the car was an ordeal for her.  Elizabeth’s hands were like blocks of ice and she looked very pale.  Whilst the hospital looked like a high secure prison I have to say that the staff were nice to Elizabeth and it is the first hospital where I have been treated decently.

So to begin with Elizabeth did not want to go out at all anywhere.  Even going up the road was an ordeal and she made excuses not to go out and was making herself physically sick.   It was like when she first came home and when someone is stuck indoors and only taken for short walks or allowed limited fresh air outside of the building, they can suffer from Agoraphobia and their confidence can be destroyed.   My own friends and close family had been working with Elizabeth to try to get her out and about as much as possible when she came home from the care home in 2014.  Slowly and gradually we began to see improvement but not once has Elizabeth been out alone and she had stopped answering the phone.   This was a worry whilst in hospital as whilst staff were very nice to her this could have gone on to a section 3 and every six months you can appeal and it is not easy to get off this.  So solicitors were being turned away and no one came near apart from friends and family to visit.  I think solicitors should be visiting patients to take their instructions rather than wait for someone to phone them and this should all be a matter of course as I can see how people become trapped in the system and now Elizabeth is home she admitted she did not feel well enough to speak to a solicitor or pick up the phone and make initial contact.   Also when drugs are introduced this further weakens a patient’s ability to fight for their own release and you get up to 14 days to challenge the section 2 as a patient before the Nearest Relative can step in and challenge the section and ask for their release.  When I could see that a further increase in the drugs was being given from 10mg to 20mg I was absolutely dismayed.

It has taken Elizabeth some time to settle after her experience and she has only just started to go out with carers but not far apart from yesterday when I accompanied her to China Life Tea and Primrose Hill market. However eating out is an ordeal for Elizabeth who feels ill after eating and could not eat anything whilst out yesterday.  The only place I saw Elizabeth truly relaxed was at Chinalife. This is a truly therapeutic place and I would like to thank Don of China Life for the wonderful biscuits he sent to Elizabeth whilst in hospital.  the whole ward could have benefitted from the treatments on offer there and huge variety of teas.   When we got to Primrose Hill organic food market Elizabeth was suffering from anxiety.   I have read on a patient’s site that anxiety and akathisia are common experiences on this drug. I can honestly say that this drug is not working – none of the drugs even at maximum levels have destroyed Elizabeth’s memories.  What a waste of money and Elizabeth is not alone sadly as this is the main “care” – drugs and more and more drugs!

For the record, Elizabeth has refused injections and ECT but that means nothing when under a section as these doctors disregard someone’s wishes and go ahead.   When you see someone drug free they are able to freely speak clearly and you get to hear the full truth and emotions that have been suppressed are released.  Well Elizabeth was doing well without any drugs at all whilst in hospital and it was 3 weeks since stopping Clozapine before the next chemical Abilify was introduced.    Like I say this drug does nothing for her when what she really needs is psychotherapy and counselling.

So we are back to square 1 again trying to encourage Elizabeth to go out with carers.  She is limited to where she can go out.   We have a care plan that contains nothing.  We have had a visit from the care coordinator – I was not present but according to my carer it was not a good meeting so I heard.  A good meeting is a productive one.    I am therefore left to look into providing psychological help for Elizabeth myself as going into an acute ward for any length of time  must in itself be distressing and seeing people who are really disturbed and some even worse than you are.  This is bound to affect someone especially when there is no end in sight of release and to be uncertain as to what is going to happen next.

My criticism of Cygnet was that Elizabeth was not given an assessment for Aspergers which Cygnet offer but not at that branch apparently.  Also, the  consultant psychiatrist introduced Abilify when Elizabeth was doing well without any drugs at all and had settled down. The bad cough had gone.  My local area prefer not to pay  for proper assessments which would cost say £600 but yet think nothing of paying say £10000 a week for hospitalisation. I even offered to pay myself for the assessments but they were not done at this particular branch in Stevenage.  I was even prepared to pay for all the care elsewhere at a private rehab centre where Elizabeth would not have been drugged again.  Her diagnosis is in doubt but no one will consider this fact and properly investigate matters which means that people like Elizabeth do not get the correct treatment.

In a hospital like Cygnet solicitors will not come near unless a patient asks but what if a patient is incapable of picking up the phone and requesting a solicitor.  What if that patient fails to realise what a serious situation they are in and they have only 14 days to appeal against the Section 2.  That person can get trapped in the system especially if they are sent to Wales and Cambian like Elizabeth was where a consultant psychiatrist takes a dislike to you and that can be a real barrier in getting release.

Cygnet were one of the few hospitals where I have been included and not dismissed like rubbish.   Cygnet also treated Elizabeth well apart from these chemicals of Abilify and even suggesting about going back on Clozapine – this drug caused a rare and serious reaction where Elizabeth complained of her tongue going to the back of her throat and luckily Elizabeth flatly refused this awful drug that contains talc and aspartame.  At least Elizabeth no longer has to have blood tests and wait for hours in the local hospital waiting rooms.

So since the visit of the cpn a further visit is planned but not for some time yet.  Therefore nothing is being currently provided.

Elizabeth enjoyed her day out yesterday and today we are visiting for the first time the elderly lady and I am going to cook dinner.  I am not happy with the way this lady who I have known for quite some time is being treated by the Council.  I think I mentioned the fact that she had no food at Xmas and no one had access to her money so I had to do the shopping.   All this in an area where there is an abundance of money to spend in the wrong direction such as court action for instance and overdrugging.  I could not believe it when it was suggested that this elderly lady was lacking in capacity and I want everyone to know SHE HAS FULL CAPACITY and I am contacted as “next of kin” when things are not doing well so today I am going to see exactly how things are but I regrettably have not been unable to visit her up until now as Elizabeth has needed my help and visiting her to and from Stevenage took up a great deal of my time.

I will keep you all informed about developments as I will shortly have plenty to tell you about some wonderful changes.

In the meantime I hope my meeting with someone very important goes ahead and again I will let you know all about this.

 

 

 

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