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.

 

 

 

UK RESIDENTS RED ALERT! IMPORTANT – KNOW YOUR RIGHTS! – Go
To:- http://stopsmartmeters.org.uk/faq/

It is not possible for your Power Company or Water Company to claim they have
the right to install a surveillance device on your house. Smart Meters are no
different from wire-tapping devices.

Tell the utility company they cannot change your meter (by recorded letter – see
below for detailed instructions), otherwise they think they have your ‘implied
consent’ to ‘upgrade’ your safe meter to a meter which emits cancer causing
radiation, and spies on you.

IN YOUR LETTER to the Utility Companies you tell them they may not install a
Smart Meter or any other surveillance device on your house. By doing this, this
negates their ‘implied consent’ and therefore you are sending a clear message to
the Utility company.

Keep several copies of the letter and post by recorded mail.
In the UK, Water Utility Companies (like Thames Water currently) are fitting
‘Smart’ Meters first before the Electric and Gas companies (it seems perhaps
because Water Meters are located in the pavements and they do not need to
gain access to your property?) – Later in 2016 you will likely be getting
threatening letters and/or phone calls and probably personal visits by ‘Customer
Engagement Teams’ to ‘upgrade’ your Electricity and Gas meters to a ‘Smart’
Meter, but YOU HAVE THE RIGHT NOT TO LET THEM INTO YOUR PROPERTY TO FIT
A ‘SMART’ METER! – BASED ON:-

1. THE WORLD HEALTH ORGANISATION has given a rating for microwave
radiation as being a CLASS 2B CARCINOGEN, which these ‘Smart’ meters
emit real-time AND

2. YOU HAVE A RIGHT TO PRIVACY IN YOUR OWN HOME – ‘Smart’ Meters SPY
ON YOUR USEAGE by sending details real-time wirelessly back to the
Utility company who can then sell your data to any Third-Party companies
for marketing! Therefore if you are away for a few days holiday, the Utility
companies (and who knows who else) will see you are not at home! This
is a serious breach of privacy, so state the above facts in your letters to
your Utility Companies.

Official – D.E.F.R.A. confirms smart water meters are NOT compulsory:-
VIEW PAGE:- http://stopsmartmeters.org.uk/official-defra-confirms-smart-water-meters-are-NOT-compulsory/#sthash.eRiKBBlP.dpuf

(See this letter for yourself)
Goto:- http://stopsmartmeters.org.uk/official-defra-confirms-smart-water-meters-are-not-compulsory/

(Extract):- The Parliamentary Under Secretary for Water,
Forestry, Rural Affairs and Resource Management, (DEFRA) – Dan Rogerson MP
has confirmed in a letter to Nicholas Soames MP that “no water company is ever
required [by the Government] to introduce compulsory metering, even in areas
of severe water stress” and that any decisions to introduce metering should
“be done in consultation with customers”.

Over recent months, we have received several reports that certain utility
companies are taking a heavy-handed approach in trying to enforce
their corporate Smart Metering agendas – with at least one company
insisting that they have legislative powers to force people to accept a Smart
Meter.)

BE ALERT TO THIS SCAM! Thames Water are trying to use the excuse
“Their region is in an area of severe water stress” in reply letters/emails to
complaining customers. (See Dan Rogerson’s comments – above link – clearly
states the contrary)… YOU MUST WRITE LETTERS TO YOUR UTILITY COMPANIES
BEFORE THEY INTEND TO FIT A NEW ‘SMART’ METER (ESPECIALLY WATER
METERS!) WHY? BECAUSE THEY HAVE ACCESS TO YOUR WATER METER IN THE
PAVEMENT WHILE YOU ARE AT WORK, OR NOT AT HOME. ALSO KEEP COPIES OF
YOUR LETTERS.. IMPORTANT! – USE STOPSMARTMETERS.ORG.UK website
for ALL the help you need… Useless action to be phoning Utilities (LIES, LIES,
LIES, and MORE LIES! and Deception).

STOP PRESS! – William Mcnally of Thames Water Confirms you can have your
own NON-Smart Water Meter installed.

http://stopsmartmeters.org.uk/thames-water-confirms-that-you-can-have-your-own-non-smart-water-meter-installed/

REMEMBER: KNOW YOUR RIGHTS, NOW – BEFORE THE EVENT. READ, and REREAD THESE NOTES.

REMEMBER: YOU WILL BE LIED TO ON THE PHONE

REMEMBER: YOU WILL BE LIED TO BY EMAIL MESSAGES FROM THEIR
‘CUSTOMER SERVICES’

REMEMBER: SOON THE ELECTRIC AND GAS COMPANIES ARE GOING TO HASSLE
YOU, BY PHONE OR BY REPEATED LETTERS TO ‘UPGRADE’ YOUR METER (OR
SUCHLIKE – I have evidence of this already) BUT KNOW YOUR RIGHTS IN
ADVANCE (SEE ABOVE), AND DO NOT LET THEM INTO YOUR HOUSE. WATCH MY
VIDEO NOW! >>>>>>> https://youtu.be/VK7xWIJGwBM <<<<<<<<

and also I recommend videos by minivanjack on YouTube. – a good place to start
is https://youtu.be/9WeDtQ7sXHU

He explains whenever they (Utility company) threatens you, or visit
your property to try to fit a ‘Smart’ meter you simply show them or
send them (in the post, recorded mail) a copy of the letter you carefully
worded and had sent recorded mail originally to the Utility… THIS IS
WHAT WE NEED – SIMPLICITY – A SIMPLE ACTION PLAN; OUTLINED
ABOVE.

> SEND RECORDED LETTERS IN ADVANCE. DO A DRAFT LETTER TODAY. REWORD IT LATER AFTER YOU VIEWED VIDEOS/LINKS.

> YOU HAVE A VOICE – AT LEAST FOR NOW, AS LONG AS YOU DON’T LISTEN TO
LIES FROM THE UTILITY ‘CUSTOMER SERVICE’ WHO HAVE NOW PROVED THEY
CAN BE AGGRESSIVE TO CUSTOMERS BY PHONE. SEND ALL YOUR UTILITIES A
CAREFULLY WORDED LETTER SENT BY RECORDED POST, AND KEEP SEVERAL
COPIES, AND A DIARY OF EVENTS, OR FOLDER FOR FUTURE…

This is your plan of action. Hope this helps everyone! Remember
YOU have rights IN YOUR OWN PROPERTY not to have a surveillance device fitted
against your will, or one which might give you cancer long term, or ringing in the
ears (tinnitus), depression, headaches, sleep disorders, damaged DNA Proteins in
your body (and brain), mental confusion, loss of vitality for life!

 

UPDATE ON THAMES WATER 1ST MAY 2016

My letter from Thames Water signed by Freena De Braganca – Customer Services Agent – smart metering team 0800 316 0989 – sadly she does not give her direct line otherwise I would add this to my comments.  The letter is 5 pages long and here is what I think of it:

RUBBISH!

In the first paragraph I am told the smart meter fitted despite my objection will NOT be removed.

Under the heading Why Smart Metering?

Their excuse is lack of water and they WRONGLY state that they have legal powers to fit them.  They have commenced doing this from Borough to Borough.  They say it is done for the reason to encourage consumers to use water wisely – well hardly any water is used at my home and I offered to have fitted a meter that I could read myself and submit readings but this was not good enough for Thames Water.  Thames water say they can find and fix leaks more efficiently but like I say we do not use much water and I prefer to buy bottled water in shops than their water.  So they use these smart meters to collect data.  They also threaten that if you deny access they will fine you £597.04 and I find this absolutely disgusting and would accuse them of being bullies.   I have already said that I would rather pay for a meter to be fitted other than a smart meter but still they would receive the readings which I would do myself.  This was not good enough for Thames Water.   “If at a later stage you decide you would like a meter fitted the no access charge would be removed following the installation of the meter”   –  so this is a threat Thames Water. They try to compare their smart water meters with wifi but we do not have wifi on in the house that often due to Elizabeth’s health. These meters operate in one of two ways:  “In automatic meter reading mode where a meter reading walks by or drives by the meter to collect a meter reading.  In fixed network or smart meter mode the meter reading is sent by radio every hour.  None of this has impressed me.

They compare the level of radio frequency to about the same as a TV remote control and less than home wifi and significantly less than a mobile phone but again I am not impressed.   We shall be measuring the quality of your water once such a meter is fixed against our wishes.   Thames Water “believe” them to be safe –  I would compare this wording with a consultant psychiatrist who “believes” the drugs to be safe and “believes” in the labelling of disorders dished out – sometimes several at one time.

They state wifi does not affect the water quality – no evidence so they say.  I am not convinced in anything they say especially when they use the word “believe”.

Meters plus you in control of your bills –  well actually I see this the opposite way that it puts Thames Water in control.  I personally would rather pay more than less for water of the right quality.

“when we have activate your meter we will let you know.  We will send a letter to inform you and series of comparison bills.   Now more threats ……………”Thames Water has the powers to complulsory meter its customers.”    BUT THIS  IS NOT TRUE!

If you have any further queries please callout Smart Metering Team on 0800 316 0989 –     have you tried ringing ?  I cannot stop laughing as it took me what seemed like an hour to get through and this is despite their hours being from 8.00 am – 8pm Mon – Fri and 8.00am – 1 pm.

Yes my query is when are you coming to take it away?   When are you going to fit the meter I requested that I am prepared to pay extra for.   Perhaps your manager can answer this question on Twitter please.

Elizabeth has now got her phone thank goodness.  It is no longer in the office and I think that is great as it can take time to get through and also when staff are busy to be fair it is not easy on them.  I just hope she has her charger too in order that people can get through to her.

Being on a ward such as this is not an easy experience to be cut off from the outside world and be away from home and family.  I know that some sent to this hospital are from a long distance away from home and that brings back memories of when Elizabeth was sent to Cambian in Wales.

Anyway, Elizabeth telephoned this morning and she enjoyed so much her short visit  (escorted by a member of staff) to the garden centre next door.  She wanted to go again but sadly although she was all dress and ready to go out no one was available to accompany us as they were short staffed.   I said “that is not good”.   I think it is very important that patients are taken out and taken to the gym to exercise.

I am not sure if Elizabeth has been to the gym yet although this was promised. Anyway neither of us made a fuss about not being allowed out anywhere I was disappointed though for Elizabeth.

Wednesday will be the first time I will meet the “Responsible Clinician” who has been away on holiday all this time and has just come back.    I have asked Elizabeth if one of her carers can come along and also my advocate.   I am waiting to hear if he can attend this important meeting.

I have been very busy today looking at what can be provided for Elizabeth in addition to what she already had at home.  I know that the team will want assurances that the Abilify is given but I have found a solution and am prepared to provide proof of this as this will avoid any extra expenses involved in setting up a costly CTO for instance.   Elizabeth and I are much happier with the chemical Abilify so there is nothing for the Consultant Psychiatrist to worry about.    If there were any complications on this drug I now have a very good new GP I can turn to and have signed up to some private care myself.

I wish to discuss with this team at the ward round meeting about the other diagnoses that Elizabeth has.  Everything needs to be thoroughly looked at and this can be done as an outpatient and will be less costly that the huge amount of money being spent by my local area Enfield as I am prepared to pay for the assessments myself.   It has also come to my notice that Elizabeth has been quite happy on the ward up until now and has made some friends however Elizabeth made it clear to me today that she is missing her cat and is worried about the family and misses everyone.  We all miss Elizabeth and I have a holiday lined up.  The holiday will be very therapeutic on organic farms with animals near the sea.  I cannot think of anything more healthy and beneficial.   I have found Elizabeth to be fine during my visit this weekend and although she was a bit anxious about going out on Saturday she soon relaxed as it was a lovely peaceful setting.  The next time the consultant psychiatrist promised me that I could take her out unescorted and there are two lovely pubs down the road where they do nice meals.   I hope this will be allowed on Wednesday.  I am going to phone early tomorrow as no alterations should be done in the dosage just before her assessment.    This is not right at all in my opinion.   I think I need to speak to the Responsible Clinician about this myself as others prescribing in his absence.

The Consultant Psychiatrist did say to me “I will keep the dosage to a minimal dosage”  Now it is doubled and I do not want to see it trebled.  I will keep you all informed as Dr Ann Blake Tracey said that any changes in medication can obviously affect someone and even I as a mother would know this.   Any changes in medication should not be done right bang before an assessment in my opinion and then you get told that the person concerned is not all that good.   Well this weekend Elizabeth has been great and she has really enjoyed her visit out to the garden centre.

Anyway I cannot fault the lovely nurses and staff and reception people but I have seen some shocking reviews and I hope that my good experience will continue with Cygnet Hospital Stevenage Orchid Ward.  I really hope that a fair solution can be achieved rather than keep Elizabeth on a locked ward where she has no possessions with her for years and years on end at enormous expense to ENFIELD.    This is suitable for short term only in my opinion.

Anyway I will keep you all informed as to how Wednesday’s Ward Round goes.

Since 15th March, Elizabeth has been held at Cygnet Private Hospital, Stevenage for assessment purposes under Section 2.  There was an initial two week period without drugs (three weeks in total) where Elizabeth seemed to be improving day by day and was stable without any problem and she was refusing every drug on offer.  We have never seen her look so good and she was alert being without any drugs and were no problems on the ward during this drug free period.

After the initial two weeks – 10mg of Abilify was given and the Psychiatrist was not there on duty when I found out about this.    I had advised Elizabeth to take something as I heard injections can be forced upon people whilst under section if they refused the drugs being offered.  And so Elizabeth took my advice and complied without any problems.  I thought this would be the quickest way to ensure her early release and a week ago at the last ward round I was full of hope as I was told that there was no reason why she should not be allowed out for the family holiday which is only next month.

The problem is that there have been two changes in the drugs only recently, just prior to  Ward Round and of course someone is bound to feel the effects of this.   I was therefore most disappointed today to learn that yesterday that drugs have been increased to double the amount of Abilify (20mg).  I wanted to speak to the Consultant Psychiatrist to see if he had granted any leave yet but it did not appear so –  when I asked about her progress, having visited throughout the Easter weekend on the ward when she was fine, witnessed by friends and the rest of the family,  he said that she was not too good right now and I was not surprised when I heard that the drugs had been doubled to 20mg.    I wanted to hear whether my daughter would be allowed to leave hospital shortly and come away with us on a family holiday we had booked on farms in both Devon and Cornwall as I needed to pay the final balance but no definite answer was given. I now do not know what to do about this holiday that we were all so looking forward to.  What is the point in paying the rest if she is not allowed to go – this will spoil things for everyone in the family and getting away to a place where there is fresh air, good food, hopefully sunshine would do her the world of good.

I am invited to the next ward round which on Wednesday  6th April and according to the consultant psychiatrist will then be told the full facts.  I have already been asked to agree to a CTO (Community Treatment Order) – this is just another name for forced drugging to ensure compliance in the community and costs extra money on top – I wonder how much extra this costs.    I said that it would not be necessary or words to this effect at she was happy to take the Abilify and I see this as a much better alternative to the Clozapine (made from talc and aspartame) previously prescribed that resulted in her having this terrible life threatening condition (loss of control of her tongue) which got stuck at the back of her throat- ie NMS – which is why I felt I had no choice but to take her off the drug slowly and gradually so she did not suffer any pain or withdrawal symptoms throughout titration and was going out up to the last minute – taken out by my carers.  It was four days after stopping the drug completely that she developed a nasty cough/virus and this was when  I immediately sought private professional help outside of my local area (Enfield) and turned to Kent where I was prepared to pay a lot for a luxury rehab facility.

Cygnet Hospital must be costing my local area (Enfield Mental Health) a fortune – I reckon it must be costing circa £10000 per week and yet I am more than happy and quite prepared to pay out of my own pocket so that my daughter can experience a more therapeutic environment as she wishes to make friends of her own age.  I have seen some very good places and healthy alternatives to a ward.

Previous care homes have been a disaster.  In one local care home that must have had say c.12 occupants she was dreadfully abused whilst on maximum levels of drugs Quetiapine 800mg.  How can you function on this!   Every time it was time to go back to this scheme she reacted and certainly something extremely serious happened there.  I turned up one evening to find the Sapphire Squad and the Drugs Squad there speaking to my daughter who apparently had gone missing.   This is written in detail in the files.  With a member of staff sleeping in throughout the night there was no security and whilst the police were there in my presence someone kicked the door open in the hallway as the latch had broken.  So absolutely anyone could get into the building and Elizabeth’s flat was on the ground floor which made her a prime target for people visiting other residents which I wont go into here.

The other care home based in Northampton was where she was sent from Cambian Healthcare in Wales.   At least a two hour journey from home  and she was there for  a few months and first of all she liked it but soon it became difficult to get through on the phone and their explanation was that there was a poor signal in her room.  They then tried to get her to choose between Mum and Dad for next of kin and a solicitor I appointed did some enquiries which led back to local social services who were trying to arrange a CTO.  They did this by depriving the drug Clozapine when my daughter told me she did not wish to return back to care.  It is really shocking what lengths they went to and this prompted me to write my account of what happened called “Get Her Back We Are Paying For That”    Yes the taxpayer is paying for this and the treatment of my daughter was appalling.  I had to appoint solicitors in a case that was all about “Deprival of Medication – Community Care”.   We then were subject to constant visits and infiltration of social services staff with the Crisis Team who were visiting at the time to ensure re-titration of the drug Clozapine and this was done to report any negative things back to social services for court purposes.

It is not the case that I deprived the drug Clozapine -this was done due to serious concerns for her physical health and the titration was done extremely slowly and carefully thus avoiding withdrawal pains with plenty emphasis put on healthy diet and nutrition, whereas when the team deprived the drugs, she was left to withdraw without anything at all.  Wherever I turned the answer was always the same -take her back to the care home but now I can read to the full extent of everything in that the care home refused to release the drugs so even if went to collect the drugs as I had offered, this would have been refused to me.

It grieves me to see my daughter on another ward however nice staff might be as so much effort went in to cooking healthily and using pure ingredients and other efforts by my carers since coming home.   Elizabeth stopped smoking since coming home.   I made a real effort to buy only the best organic food and drinks with no additives.    She was talking well and able to reflect clearly on her time on previous wards and shocking memories and was just starting to open up to some of my friends who have suffered themselves from similar experiences ie. peer support and together Elizabeth and I attended conferences, meetings with former patients, open dialogue workshops where we took part with professionals. When she came home after nearly three years away I bought nice chairs to lie on in the garden and I had to buy her all new clothes as many of the clothes were too small as she had piled on the weight with the Clozapine and could hardly walk.  Elizabeth had to cling on to our arms like an elderly person.  She complained of dizziness, blurred vision, heart/chest pains and she had developed tachycardia on Clozapine and been given for some reason Clozapine chemotherapy and metformin which is contra indicated.  She had developed Agoraphobia from being on a locked ward and not allowed to go out much.   I have been trying to find out the real reason why she was given Metformin but the Bethlem have not been forthcoming with this information.  I thought she had diabetes so I booked extensive private tests.  I even went a step further as it had been recommended that I have the P450 liver enzyme tests done.  I never did think my daughter was mentally ill but rather a victim – a victim of the most terrible form of abuse that had occurred in the first instance and due to vulnerability under the care system as documented in the files in-depth.  No-one will take any responsibility or provide the trauma therapy that is really needed as drugs certainly are not the answer.  Knowing that in my local area Enfield I would get no support at all especially having read all their nasty comments and conversations I then tried to get the care transferred to another area as I have found that we got on with professionals who attended the INTAR and ISPS Conferences but these were from areas such as Liverpool, Nottingham who were keen to see change but it would seem like this is a post code lottery – some areas are prepared to look to the future and wish to see a better system whereas others are content to just carry on as normal.

 

I hope by writing this blog everyone can see the full extent of what is wrong with the current system.  There is supposed to be a shortage of money but it does not appear my local area Enfield are at all short of money judging by what they are paying out right now.

Everyone at home is missing Elizabeth but I respect her wish to “find herself” –  however I do not think this could be achieved either at home or on the ward where she currently is.  Something different needs to be tried other than secure units and care homes.

I have shown Elizabeth pictures of some wonderful schemes that are a bit different from the average care home where good friendships can be formed in a therapeutic environment.   The cost is a fraction of what is currently being paid.  Elizabeth looked at these pictures and showed an interest.   When a placement is being organised the team give a choice of three different placements and I myself have found three different placements of a therapeutic environment completely different to what has been tried and failed in the past.  Last time this was done at Cambian –  there were two therapeutic communities but she only saw two placements and the cheapest option was a care home but Elizabeth was not amongst many people of her own age there and became isolated and did not go out much.  Being stuck on a hospital ward long term did her no good and she was dependant and reliant on staff within the care home to take her out.  When we took her to Woburn Abbey she struggled with issues such as panic attacks but since coming home some of my dedicated carers have taken her out in crowds and to places where she could socialise – places like china life tea and saunas, hairdressers, parties, exhibitions, shopping for healthy food, out with other people for drives, fishing, outings, cinemas and shows in London.   We have tried to do so much in the absence of any care of help whatsoever by our local area Enfield.   I have a care plan which I have just sent to my MP Joan Ryan but there is nothing on offer and it wrongly states that we are happy.

From May 4th there is hope in the form of Open Dialogue and I have already applied for  transfer of care to another area where they have  Open Dialogue. I can’t wait for this to commence.    At one recent conference we took part in Open Dialogue with  professionals from other areas and Elizabeth was the one who started off the conversation and spoke voluntarily on how it felt to be taken to court. Professionals were in tears when they heard her speak.  I will never forget that phone call I had whilst at work to say that the girls were hiding in a cupboard under the stairs as social services were yet again knocking yet again at our door and they begged my lodger at the time to say they were out.   As Elizabeth said in her own words “its not fair Mum – they are asking me to choose between you and my Dad” .   This shows the system up for what it is in my opinion and how much there is need for complete change and a more humane system.

I have lots of friends who have sons and daughters stuck in institutions for many years and I think it is so important to bring this sort of thing out in the open as it affects everyone, which is what I am doing.  The spending of huge sums of money affects everyone at a time when there are huge cutbacks and I am willing to pay myself  I am not running down the hospital but just observing everything that is going on in respect of my daughter’s time there as I would not wish for her to be trapped on a locked ward that is meant for assessment purposes where she cannot even have her own possessions in her room for too long a period of time and she will always has a home with us but, at the same time, I am happy to let her go and for her to get the trauma therapy she needs in order to become well and it is not drugs that are the answer as even on the highest levels of drugs, she could still remember what happened and this is all too easily dismissed by doctors.   In this case the Consultant Psychiatrist is a man but Elizabeth told me she found it difficult to speak to men and therefore is holding things back.  She even admitted this fact. In order to get well she needs to go somewhere where she is not alone in her experiences.   For instance when she stopped taking the Clozapine I heard over and over again “you don’t know how I feel”  – intensive trauma therapy is what is needed in a pleasant safe, humane therapeutic environment where even if this is a fair distance from home, contact with the family is encouraged.

I will keep you all informed as to how things progress and today I contacted my local MP just to inform her of our current circumstances and following on from our joint visit to her not long ago.

 

 

 

My daughter Elizabeth is at Cygnet Hospital Stevenage under assessment and has been there several weeks.  I have not challenged this as I felt that Elizabeth needed time to adjust and the environment although not therapeutic long term seems to be peaceful whenever I have visited and staff helpful.   There is no pressure on Elizabeth to cope with since coming off the Clozapine.  Whilst Elizabeth tells me this drug has been offered to her since her arrival she is adamant she did not wish to take it and apparently she has told a friend of mine that she is grateful that I took her off it.   I had no problems in doing this until four days after stopping the final piece of the drug and she had developed a very nasty cough so I then contacted a luxury rehab centre.  The waiting around to be assessed affected Elizabeth and she was rude to an ambulance driver who then called the police and things went from bad to worse but all the time in the ambulance whilst waiting to be transported to a hospital in Margate I was determined to find somewhere else for Elizabeth so she could get nursing care and peer support as she kept saying “you don’t know how I feel”.   How can any of us know how it feels to come off these chemicals and I could not help so I went out of my way making phone call after phone call until I found somewhere else.   I then told the police it would not be necessary for Elizabeth to go to another hospital as Margate could not help and we were destined for Maidstone by this time.  They refused unfortunately to lift the section.  Elizabeth just threw a drink in frustration at being kept waiting for ages which is understandable.  Just to reflect I had little choice – when someone complains of not being able to control their tongue, the tongue going to the back of their throat  and other serious symptoms and the fact that there was no one I could turn to in my local area.  As I have said everything went smoothly until four days afterwards and she developed this awful cough.

Anyway I am pleased to tell you all Elizabeth does not have a nasty cough any more.  She looks slim and I was pleased with her appearance today.  She is happy to stay on this assessment but this is not the place for Elizabeth long term.

I have shown her some good alternatives where it is not a care home –  Elizabeth has been either put on locked wards which is entirely unnecessary and the last one at Cambian was more than one year leading to disablement.   This place at Cygnet has a gym, they have a music room and an exercise yard and garden downstairs.   There is more one to one care and I cannot fault the staff.    They have not treated me like I have been treated by local services and other previous places where Elizabeth has been sent.   I even liked the Consultant Psychiatrist and that is saying something.  He seemed to listen and respect the fact that Elizabeth did not want to be on huge quantities of drugs and he noted her behaviour was exemplary.

It is a fair drive from where I live to Stevenage and I cannot get along there during the week.   I have been to visit most days and brought with me some friends too.   The rest of the family visited yesterday so I decided to do some decorating at home and tidy up the house.  I have stripped all the wallpaper off Elizabeth’s walls and I also want to do the hallway too.  I feel that this will be nice for her assuming she will be allowed to come home again.  I am not disputing the Abilify which I see as a better drug than the Clozapine.

I have listened to Elizabeth when she said she want to “find herself”.  I agree but I hope that I can get the rest of the family together for a meeting to discuss this important thing.  I have shown Elizabeth some of the wonderful facilities but none of them are near to home.  If Elizabeth wishes to make friends and be independent I realise she needs to move and I wish to support this but at the same time I would not like her to move to a care home like the last one where according to the files she was expected to manage on just £30 a week and when she did not manage no food at the weekend.  How can anyone get well like this.  Now this is not the place I wish to see Elizabeth go to.  What I could not provide for Elizabeth was the help psychologically and only someone like a peer supporter who has been through trauma could really help her and understand.    Elizabeth was feeling well during the titration and was on hardly any of the chemical Clozapine for quite some time.  She was going out and about and not lying in bed like I have read some patients describe on social media.  Elizabeth was fit and well apart from showing signs of tardive dyskinesia and she mentioned once about loss of control of her tongue which I could not ignore but when I stopped the drug completely she developed a nasty cough and was not eating properly.    Anyway I asked the hospital to do a thorough assessment of the condition that I recognised NMS (neurological malignant syndrome).

Easter has been quite sad being without Elizabeth as like Christmas I would have cooked dinner for the family and we could have all been together but the weather has been so awful and I am thankful as I would have hated Elizabeth to miss out on the sunshine and good weather where I could have taken her to the coast.

I have written today to the Consultant Psychiatrist as I have a holiday booked and I have paid money for this but will Elizabeth be allowed to go to this –  I do hope so.

Not having Elizabeth has given me the chance to look into matters thoroughly and I am so pleased to hear that Open Dialogue will be set up in May through primary care referrals.  I have applied already for this as I am totally in favour of open dialogue.  I even thought of moving to Finland myself to find the correct care ie Open Dialogue.  I think that a friendly “community” type scheme would be best for Elizabeth as in previous care homes some have been older than her – often she has been the youngest or there have been mainly men rather than women.  I would like to see a mixed environment of young people that Elizabeth can make friends with.

I have also looked into a summer recovery camp but Elizabeth needs to agree to this and right now in hospital this is not the time to ask her but first of all is this family holiday if she is allowed to go.   I have booked farm accommodation in a peaceful therapeutic environment near to the sea.  I wish to visit a friend of mine who lives in St Ives so the first part of the holiday will be there then in Devon where I have booked accommodation on an organic farm.

First of all Elizabeth might like to come home and relax and consider all the options for respite that I  have looked into and I have made enquiries as to cost too.  Hospital must be the most expensive thing of all.

Whilst there are good facilities at this hospital what I do not like is the fact that Elizabeth cannot have her things in her room and things are kept on a tray in the kitchen.

You are thoroughly searched before going in to this hospital and you have to wear alarms and I just feel that this is only suitable for a short stay because of these types of restrictions when for the past two years Elizabeth has been fine at home – no problems.  You are bound to  have some reaction when you come off a chemical such as Clozapine –  I was expecting this!   As I told the consultant psychiatrist this behaviour is not mental illness but withdrawal symptoms:

Here is some information re: Clozapine and withdrawals:

Cholinergic rebound is a likely explanation for the mild to moderate withdrawal symptoms and is easily treated with an anti- cholinergic agent. Mesolimbic supersensitivity, as well as specific properties of clozapine, are dis- cussed as likely causes for rapid- onset psychosis.

Cholinergic Rebound and 5d Rapid Onset Psychosis …

schizophreniabulletin.oxfordjournals.org/content/22/4/591.full.pdf

BECAUSE CLOZAPINE CAN CAUSE SERIOUS BLOCKAGES OF THE BOWELS, AND YOU CANNOT HOLD DOWN FOOD IN THE END, AND GIVING UNDER THE TONGUE (SUBLINGUAL WITH THE SPRAYS) PREVENTS MALNUTRTION

 

http://www.goodtherapy.org/drugs/clozaril-clozapine.html .. not recommended for use by older adults with dementia or dementia-related issues as it may increase the risk of death. If you have or have ever had heart disease, heart failure, irregular heartbeat, stroke, liver disease, kidney disease, diabetes, glaucoma or seizures, you should talk to your doctor before you take this drug. Tell your doctor if you have ever had urinary issues or problems with your prostate. Let your doctor know if you have phenylketonuria. Orally disintegrating Clozaril tablets contain aspartame (Click for SHOCKING VIDEO), which forms phenylalanine.

Clozaril may interact with other medications or supplements, including antihistamines, antidepressants, antibiotics, antifungal drugs, vitamins, minerals, herbal products, sleeping pills, HIV medications, high blood pressure medications, and more. If you are taking other prescription drugs or supplements, you should check with your doctor or pharmacist before taking this medication.

A single tablet of Clozaril may be extremely toxic to toddlers. Confusion, involuntary muscle movement, nerve damage, coma, and respiratory arrest may occur if toddlers ingest just 50-200 mg of clozapine. 

RE CLOZAPINE WITHDRAWAL:

When someone goes off a psychiatric drug
they might have anxiety, mania, panic, insomnia,
depression and other painful effects. They can
become “psychotic” or have other symptoms from
the psychiatric drug withdrawal itself, not because
of a “disorder” or condition.

This may be the same,or even worse, than what

got called psychosis or mental disorder

before the drug was taken. Typically

people are then told this shows their illness has

come back, and that they therefore need the drug.
However, it may be the withdrawal effect from the drug
that is causing these symptoms.
These withdrawal symptoms do not necessarily
prove you need a psychiatric drug any more than
headaches after you stop drinking coffee prove you
need caffeine, or delirium after stopping alcohol
shows you need to drink alcohol. It just means
your brain has become dependent on the drug,
and has difficulty adjusting to a lower dosage off it.
Psychiatric drugs are not like insulin for a diabetic:
they are a tool or coping mechanism.
However, when you have been on psych drugs for
years, it can sometimes take years to reduce or go
off them, or you may have long term physical or
psychological dependency. Sometimes people on
these drugs develop ongoing withdrawal symptoms,
chemical brain injury, and damage. This may not
be permanent, or sometimes people live the rest
of their lives with these brain changes.

There are facilities for people to go in and withdraw from illicit drugs but I found out there is virtually nothing as regards prescribed drugs even when you are prepared to pay a lot of money.  Because of Elizabeth’s diet virtually no symptoms were seen of withdrawal throughout and Elizabeth is so happy that I helped her especially since I have been looking into not only the ingredients of these chemicals but also the ingredients of food and it is disgusting that on the supermarket shelves there is food that you think is healthy but contains no end of additives so I was cooking in coconut oil, using Himalayan rock salt and palm sugar.  I was paying special attention and not buying rubbish food.  No wonder Elizabeth felt well throughout everything.  Elizabeth is happier on the Abilify now.

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