Archive

Monthly Archives: May 2016

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.

 

 

 

%d bloggers like this: