Home is a 4 bed house on the outskirts of London. Her sister lives at home and we have a long term family friend as a lodger so there is always someone there with Elizabeth and she is not alone. We have lived at this house for years now since Elizabeth was a baby but the area has changed – not the same as I remember it being as a child years ago. I think the area has become more built up and not as nice as at one time. I have often thought of moving somewhere else lately and I did like Wales very much as an area but an area close to the sea, somewhere peaceful would perhaps be better for Elizabeth but having said all of this the care home was on a busy main road and in a more noisy location than home. Elizabeth never went out except when accompanied by staff but would know her way around the local area and I have given her a key. When Elizabeth asked to come home because she was being put under pressure by a member of staff at the care home and my later enquiries pointed to local social services, I did not hesitate for one minute. She has been away for years now but was having a bad reaction to the last drug and kept ending up in hospital and this all had a negative effect on her. Things have changed now and everyone in the house is pleased to see Elizabeth back and she has been getting on with everyone. Friends and neighbours are familiar with Elizabeth and she has a lot of support right now. I have made improvements to the house where we live right now and made a loft conversion and extended the kitchen. There is a garden which backs onto a river and it is peaceful. There are shops within walking distance and gyms – I have asked Elizabeth if she would like to join me for Zumba classes and she seemed interested and on her own accord she mentioned about joining a small local gym. The trainer there even said he could pick her up to take her. This week Elizabeth has been to Southend with her sister, hairdressers where they have done her hair nice with highlights, cinema and a very long walk with my father’s former carer who has known Elizabeth since a child. Elizabeth has stopped smoking as everyone was smoking at the care home in the garden. She is much improved in her appearance and I have got some of the recipe books down for Elizabeth to choose on a day to day basis what meals she would like to cook and prepare with me. Together yesterday we cooked a couple of meals for during the week as well as some very nice cakes. I would like Elizabeth to go out with people of her own age that are decent and responsible. I would like to her to be on the minimal therapeutic dose of medication as she has proven she can function even better on less. At the care home she was in bed at 6pm and asleep in the afternoon. She is only 27 and she was the youngest apart from just 1 other person there. At home she is up late and even manages to get up early in the morning. She is under no pressure or stress as some of the team think. Elizabeth is in fact doing well. She made her own breakfast, she cooked her own tea – yes she has capacity. She even reminded me of something the other day and remembers to feed the cat too. Elizabeth can manage and is not someone so helpless as the team would like to think. The main problem with Elizabeth has always been communication and speaking up. Ever since a young child she was always very quiet whereas I had the opposite with her sister. Elizabeth was immaculate in appearance and was doing well for herself. It is never too late for her to succeed in life and I as a mother now have a much greater understanding having read so many books on the subject. I would put past behaviour problems solely down to the drugs in that she is a poor metaboliser or cannot metabolise the drugs and this is why I am very much in favour of a National Metabolising Programme. This would save money to the NHS and I would like to take Elizabeth to have all these tests done by Professor Pirmohammed. We are all so happy to see more of Elizabeth and of course there is no need for the Lorazepam given by the care home as and when needed. Elizabeth has her cat which is more therapeutic than anything and I have gone out and bought some of the other drugs like Senna for instance in case of need. Tomorrow I am taking Elizabeth to a spa hopefully – somewhere relaxing.I hope that one day Elizabeth will have a home of her own. I do not mean by this a warden controlled home or one as part as a mental health scheme I mean a home of her own and I would like to buy such a home for her myself but she would need some support however I have seen her manage extremely well at home and I do not do everything for her.
At home Elizabeth is safe – so many possessions have gone missing before. Elizabeth

Since Elizabeth has come home in accordance with her wishes things have been going extremely well.

Last week many friends and neighbours came to see Elizabeth and help whilst I was at work however Elizabeth has prove she is more than capable of looking after herself and has even reminded me of a few things.   I am extremely pleased with her progress and she is looking better as she gets out more and is gaining confidence and most importantly she has stopped smoking.  There is no one who smokes in the house and she is not encouraged to drink.   Home is an especially safe place as there is no consultant psychiatrist overdrugging her.   There are staff that call twice a day from the Home Treatment Team and it is a shame really because we cannot go out and do very much as we have to wait in for them.     In the mornings Elizabeth does not always feel too great however throughout the day she has shown responsibility and initiative.  For instance I went out to buy ingredients to do some cooking –   We together cooked two meals for during the week and one for today and also cakes.   I did chocolate brownies, honey, date and walnut and chocolate cakes.  I am quite exhausted now but they have come out quite well.

Elizabeth is looking fitter as a friend of mine took her out for a long walk – further than even I would attempt to walk the other day.  She also got taken to the cinema and her sister took her to Southend.    If it is nice tomorrow we will go out somewhere.

Elizabeth does not need any lorazepam since coming  home because has has her cat .  This is a highly addictive drug –  not only that there were others as well.    I have bought the other drugs but they are not needed on a day to day basis –  she has enough drugs with the Clozapine and that I am told is far too high –  that is if they increase it to more than 100mg.      It is no wonder Elizabeth had to sleep int he afternoons and was in bed at 6pm.  Now she is up at this hour and it witnessing me writing this blog  and Elizbeth says hello to everyone – she is doing extremely well since being at home.    The problems in the past have since gone and that is because Elizabeth was suffering Akathisia as a result of the Quetiapine which was  given at 800mg – maximum dosage.-  I am keen as a mother that she remains on the minimum and not the maximum dosage and besides the very fact she is treatment resistant shows that when she was deprived of the drug several days there was no effect at all.  So if she can do OK on a lower dosage then this is what the consultant psychiatrist should be looking at – minimal dosage as it is very therapeutic for Elizabeth to be surrounded by family and familiar faces.

Apparently whilst at the care home Elizabeth was worrying about how her family were.  It was no wonder why she was stressed and now I am seeing huge signs of improvement.   Elizabeth had not forgotten cookery and did not even need to be prompted in the kitchen.  She has hung washing out and knows that because I work full time she has to be independent in this house.   This morning she made breakfast and together we prepared several meals plus the cakes which I have just had a look at and I am very pleased with how they have turned out.

Clozapine:

“Clozapine works on a plasma concentration which is only partially related to the amount taken.  A dose of  350mg  may or may not produce a plasma level of 350ng/mL (nano grams per millilitre)  This is entirely dependent on the patient’s metabolism.  The reason why some patients are given catastro0hic doses as high as 900mg is because they are poor metabolisers..  This is the craziest medication scheme known to the medical profession.  The body is not metabolizing a toxin so increase the toxin!  

The minimum effective dose can be achieved by discovering what is preventing the uptake of the drug.  Cigarette smoke for a start can lead to a higher dose requirement to get to the proper plasma concentration but no help is given to patients to give up smoking.    CYP450 antagonists also cause the drug plasma concentrations to be low in spite of high oral doses.  If the patient is a poor metaboliser the metabolism problem needs addressing and then a much lower dose will be effective. 

People who do not know about pharmacokinetics and pharmacodynamics should never be allowed near a prescription pad and quite how social services would now about this I cannot imagine”      Well I want Elizabeth to see Professor Pirmohammed about this and he is out of the country right now and I will be trying again and will be at the INTAR Conference so will check on this but why is there not a National Metabolism Programme.  Elizabeth is treatment resistant and how many more are having bad reactions to these drugs and this has nothing to do with a so called diagnosis but whether someone can metabolize the drugs and Elizabeth cannot so all of these treatments are a waste of taxpayer’s money – it would appear that some professionals are driven by blind ideology.   Social services should not have any control over medical decisions  “they are well outside of the expertise and remit here – this is professionally unacceptable and should be reported”   WELL I AM REPORTING THIS –  NO WAY SHOULD SOCIAL SERVICES BE INVOLVED IN ANYTHING TO DO WITH THE DRUGS AND ELIZABETH WAS ONCE PESTERED BY A FORMER SOCIAL WORKER TO TAKE CLOZAPINE –  WHEN I CONFRONTED THIS SOCIAL WORKER SHE DID NOT DISPUTE THIS FACT.

“THGE CORRECT REGIMEN FOR ADMINSTERING PSYCHOPHARMACEUTICAL MEDICATION IS BY TITRATING TO A MINIMUYM THERAPEUTIC DOSE NOT ONLY TO PROTECT THE PATIENT BUT TO REDUCE THE COST OF TREATMENT”

I quite agree with this

“If a patient is managed on 100mg then it is manifestly absurd to increase the dose

  – well Elizabeth was managed on nothing a while back whilst  refused assessment and I desperately tried to get this chemical even phoning Novartis as I knew she could not just come off it  –  however now I have seen Elizabeth is OK on much less a dosage than before.  Possibly she needed that higher dose when she was in hospital but now she is home and that in itself is therapeutic.

To my horror the Home treatment team gave me the blood test form and it said Lithium –  I was gong to refuse this as this is contra indicated and then there was a knock at the door to say this had been given by mistake however I know of people on this drug and Clozapine and the Oxford Psychiatry textbook warns against concomitant prescribing of this type.  There are interaction warnings with Lithium and I have information on this.  Anyway Elizabeth does not need any other drugs right now – she is fine and doing well.

I am going to take her out somewhere nice tomorrow – hopefully the weather will be better in the UK.

To the Manager of Social Services I have seen your note put through the letter box trying to carry out an assessment on my daughter whilst I am at work knowing full well that she has been deprived of the drug Clozapine thanks to your Department for over three days.  I do not wish any of you to drop notes in the letter box and there is someone with Elizabeth on a day to day basis.  No doubt you may have tried to knock at the door of the house but got no answer and you would be faced with friends who are looking after my daughter in any case and would not be allowed in to carry out your assessment and this would not count in the circumstances.  You last threatened court action if I did not return Elizabeth to the care home and I would like to know on what grounds especially when Elizabeth was most upset at being asked to choose between Mum and Dad.  Would you wish to go back to a care home if you were asked to choose between parents and be miles away from the family and cat.  I can quite understand her not wanting to go back there and it is not very professional behaviour on your part to now try and arrange an assessment at my the house whilst I am at work knowing that Elizabeth will need a solicitor present and you can be sure I have advice the solicitors with my daughter’s consent.  No assessment on your part would be considered fair at all without the opinion of a top consultant psychiatrist from the CEP as to how Elizabeth’s cognitive ability would be affected due to being without this chemical for nearly four days.  I see this as very underhand on your part and no doubt you knocked on the door first to try and gain entry to my home.   You need to contact the solicitors for a start and arrange this properly and also anything you need to contact me through the advocate at the local carers centre –  No assessment is fair in this manner-  you know that Elizabeth is weakened having been without the drug for so many days and you have tried to blame me for this when I have so many witnesses that I made every effort to get this drug.  I am not refusing for her to ever have an assessment but your idea of an assessment is totally beyond belief!  

I have written to my MP and Head of the Council to complain about this as an assessment must be done in a proper manner and why the hurry –  lets play fair shall we and say Elizabeth should be given time to adjust to the drug first and should be represented and not be alone with you.     I do not want to see any more notes put through the door or to h ear from those looking after Elizabeth that you have turned up at the house  –  this would never ever be considered to be a fair assessment on your part and would be every bit as bad as the nurse who tried to get Elizabeth to choose and this greatly upset her and I was not too impressed either quite frankly especially given everything I have had to put up with before.  This amounted to harassment when your department desperately tried to get rid of a caring mother –  she is looking better and feeling better since being at home with her pet cat and also on less drugs whereas she was being overdrugged at the care home and where is the £200 worth of things that have gone missing.  Now this is something that you can investigate j- the oils and the supplements that contained plenty of fish oils.

Your department have got involved in assessments delaying medical treatment and I am complaining about this.  Your department should not be delaying treatment such as the drug Clozapine although I have since heard that Risperidon is a better drug.  It is a good thing Elizabeth is at home as we care –  I am not the mother that your department portray me as but one who has researched the drugs thoroughly and just because I have challenged the team you want to get rid of me.  Well I have had good cause to challenge and I have to say I am quite knowledgeable now about the drugs but no one in your department can accuse me of depriving Elizabeth of the drug Clozapine when I was up at the hospital every day and even went to Harley Street as I know very well you cannot just come straight off these drugs.     

Not only was Elizabeth being over drugged at the care home but she was once again being coerced and enquiries made by solicitors led to your department. 

Now we can communicate through the advocate at the carers centre from now on.  I have complained about your note by the way,

It is a waste of money to take me to court yet again and a waste of money to put someone who is treatment resistant on the same level of drugs when it is better for her to be at the therapeutic dose of 100mg.   As a mother how would you feel if this is your daughter.  To you she is just a number – to me she is my daughter and I have every right to be concerned as to her treatment and want a fair assessment and fair treatment and what you are trying to do is not fair in my opinion. 

I have to wait in twice a day in order that nurses from Home Treatment Team visit.  They come about 10.00 – 1100 am in the morning and again at around 7.30 pm. 

Yesterday I had a nice day –  I went to Southend with my sister.  We went to the Adventure Island but this was shut and not open on a Monday.  Then we went to the beach – it was a very hot and sunny day and it was lovely to be out at the beach although I do not feel 100% right now due to having a headache and it was busy but I was OK.  We sat on deckchairs on the beach and we had fish and chips.  It is the first time I have been to the coast for ages and it made a nice change but then we had to rush back for the Home Treatment team and got stuck in lots of traffic..  My sister was panicking as she thought we would be late but we had not missed the home treatment team.

Today I have had a more restful day.  Lots of friends of the family are calling and staying with me and it is nice to see so much support.  Today a friend of the family helped take me to the hospital for blood test and then we went to the cinema.  We saw the film Godzilla.  Then Mum came home from work but again I was not alone. 

Right now I am relaxing with my cat and Mum says another friend of the family will be coming over tomorrow.   

Elizabeth spent the day at the hairdressers yesterday and looks much nicer now.  They had to spend a good part of the day stripping the horrible reddish mauvish colour out of her naturally blond hair. She now look much better  and also due to being outside in the garden she is starting to gain colour in her face too and has stopped smoking as she had recommenced at the care home where everyone goes outside in the garden to smoke.  Considering Elizabeth was deprived of the drug Clozapine for 3 days and then did not receive it until late on the fourth day I am amazed at her progress but a good explanation is that she is treatment resistant so this drug did not do anything for her anyway and in my opinion is a waste.  It is an expensive chemical to give and involves staff coming to the house twice a day.  They then do their report to social services and the kind of questions they are  “did you sleep well – did you have any nightmares and how are you feeling.  I made sure I passed a letter on which I want given to the consultant psychiatrist – another one as God knows what has happened to the last one.  Some of the nurses were scared of my lovely cat.  Maybe the consultant psychiatrist is afraid of this too.  Maybe that is why he has been changed to someone else.   Anyway I made it clear that now is not the time to do an assessment –  come on –  this is ridiculous when someone has been deprived of the chemicals for over three days it is never ever going to be a fair assessment.  I know this as a mother.  Anyway all their questioning is irritating for Elizabeth right now and why should she have to put up with this –  at the end of the day she has made it clear to so many people, neighbours, family etc she wants to be at home.  I am happy to have her at home and money is saved in this way to the taxpayer. 

Whilst I am at work this week I have made special arrangements. Elizabeth is becoming more confident since being at home – she has settled down and seems a lot happier. There were problems in the first instance but this was when Elizabeth took herself off 30mg of Cipralex in one go and another with the Aripraprazole. In all cases she was having the most serious side effects which were ignored and of course she suffered psychosis but then anyone would have in the circumstances. Now however things are different, despite being denied an assessment by local social services and without the drug Clozapine for over 3 days she has suffered no psychosis. Elizabeth is older now and has been on a cocktail of drugs leading up to this last resort drug. Not one of them work – she is only on 25mg atm but in the morning feels a bit rough. All the time the nursing staff are questioning Elizabeth and reporting back every word to social services to a department run by someone who is behind previous attempts to displace me with the excuse being that I would stop the drugs or encourage her to stop taking the drugs. I admit I do not like the drugs which have made Elizabeth decline physically but she has proved lately she can manage on a lot less and at the care home owned by Northampton Social Services a member of staff was coercing Elizabeth to the point she was so upset she did not want to return.

They want to do an immediate assessment. They wanted me out of the room so that they could do this in a weakened state without being on the drugs for over 3 days. Now I heard they are taking me to court. I have lodged a complaint about the Manager of this department and the social worker has been highly criticised in previous legal documents. Together this team is the same as has always been and when Elizabeth and I arrived at the hospital there were staff that appeared to be highly amused and smiling – it would seem none of the staff could care less about medical ethics or human rights. To deprive medication is in breach of Art 3 of the Human Rights Act. I cannot blame Elizabeth for not wanting to go back to a care home where staff were asking her to choose between Mum and Dad. I cannot blame her for not wanting to go back to a place miles away from family where they were drugging her to the hilt. £200 woth of possessions have gone missing and Cambian forwarded me the receipt stating they sent everything on to this care home where the consultant psychiatrist not once returned calls. This same team of “professionals” are behind each and every attempt to displace me and this is because they dislike me. They dislike me as I have complained about the many serious incidents that have happened under Enfield Mental Health which they tried to cover up. I took things through all the complaints procedures and whilst the result was “satisfactory” care by the Healthcare Commission how on earth can it be when two firms of solicitors cited this to be negligence however I was told she would not get legal aid.

Yesterday we went out for lunch and I went shopping to buy Elizabeth nutritious food. Elizabeth has also had her hair done and looks so much better and the hairdressers are picking her up to re-style her hair in accordance with her wishes. She has a key, I am going to give her money each day and friends – various friends are coming round to keep her company and take her out places etc. I am so grateful to them.

I am hoping since Elizabeth is doing so well she could be on a lower dosage of the drug Clozapine – she is bound to have some side effects having been deprived of the drug because social services did not turn up to do the assessment and the pharmacist the day before had to consult with the Manager of this department and told me a psychiatrist was not available or he could not get hold of one. That meant Elizabeth and I had to go and sit and wait for ages in the MH unit where eventually a psychiatrist and three other people turned up and he flatly refused to give the drug without an assessment. It was only when I said I would cite them individually that the social worker who has been highly criticised before finally offered to do an assessment. There are three main people within that department who are in breach of the human rights Act and it is not the first time that department have been behind breach of human rights. Anyway I have complaint about these three to just about everyone I could complain to within the Council and higher up.

They have no grounds to say Elizabeth is not safe, being cared for, in danger and I have enough witnesses to refute anything being said to the contrary and as to what her wishes are because there are lots of people involved apart from myself who are helping and I have a lot of support thanks to everyone.

An assessment of someone’s capacity should not be done until that person has adjusted having been deprived of the drugs and the Manager for which no doubt they will try and blame me.

I would say that I have never been bullied to such an extent in my life by a department who funded by the taxpayer should be working with the family and have failed to do so. However now there is no need for them to be involved at all hence a saving to the public. Elizabeth is recovering greatly since being home. It is therapeutic having her cat there and surrounded by family. She can lay in the garden and rest and there are people who care around her and she is protected. She is not pulled in two directions between mother and father like this care home were doing. How can this be beneficial in her getting well when she is told “who do you want mother or father as next of kin” – these words were repeated to me and Elizabeth said “its not fair Mum – I don’t want to go back as they are trying to get me to choose between you and my Dad”. This is why I did not return her as I had also been told “we are not speaking to you – we are only dealing with Mr B. You are no longer the next of kin.” Very nasty and with all the drugging they were doing which Elizabeth admitted had increased it is easy to brainwash and get someone to say whatever they like at a given moment but nothing is accurate and considering the past record where contact has been denied etc Court Action attempted at public expense more than once – now yet again more public funding wasted – what a mess when they should be concentrating on cases where there is risk/danger to that person and not on my daughter Elizabeth who is happy to be at home and has told neighbours, friends and the whole family of this who were not too happy when they saw the drugs chart of this home.

We have to wait in every day twice a day whilst the Home Treatment Team come and visit putting Elizabeth back on the drugs again. I have requested that Elizabeth is on 100mg only and have been told this is the therapeutic dose. I was horrified at the long list of drugs given at the care home and when Elizabeth said she didn’t want to go back I listened. It is a pity the team do not listen half the time. Just to reassure you all Elizabeth is fine and I don’t mind anyone checking on this. It is not really necessary because the Home Treatment Team are doing this and reporting everything back to social services.
I have passed on to them a letter and the letter reads:

Dear Dr A (BUT NOW THERE IS A NEW CONSULTANT PSYCHIATRIST SO I FOUND OUT TODAY – A DOCTOR M)

When you are raising the drug Clozapine please bear in mind that the therapeutic dose is 100mg and my daughter was on far too much of this chemical. It is not wonder she had to sleep in the afternoon and go to bed early. She is 27 and has no life and I want this reduced to 100mg.

Then after this I have heard that Risperidon is a better drug and a 5 -HT receptor and I am currently writing to my solicitors in this respect.

It will be a saving of money to the NHS not to put her on a huge dosage of Clozapine and gradually titrate down to the Risperidon. I shall be happy as a mother if you do this as my daughter is treatment resistant and I am waiting for an appointment to see Professor Pirmohammed. These drugs you should be checking on metabolism and treatment resistant = poor or bad metabolism so there is no point in you putting her on such a high dosage. She has managed fine without any drugs for the past 3 days and I know you cannot just come off them but the lower dose the better and it is not recommended for PTSD and I have checked the NICE Guidelines for this – that is the new diagnosis and she should have intensive Trauma Therapy and be referred to Prof Roderick Orner in this respect. Please can you make a referral so that she can have the correct treatment for the new diagnosis.

You do not agree with the Risperidon but I do not agree with you because I am told this is a far better drug and you are wasting NHS money. I wish something to be done about this.

Kind regards

SUSAN BEVIS

After Home Treatment Team arrived Elizabeth and I went to Makros and got some lovely garden chairs and she can now sit outside in the fresh air.

We had lunch out and then Elizabeth and I went to Sainsburys and bought some shopping and then I did some cooking for tomorrow..

On the way to Sainsburys Elizabeth chatted to my new next door neighbour and I proudly introduced Elizabeth to him and Elizabeth j ust came out and said “I want to be at home” – Elizabeth is here with me now and says “its not fair Mum”. Nothing is fair in this country and that is why I am writing my blog so that everyone can learn about what is unfair – the kind of thing you do see in the press – HONESTY.

In no time it was time for the Home Treatment Team to turn up again and give yet another account to the social services who are now taking me to court. Is this going to be a secret court? Well I am making it unsecret by telling everyone what they are about to do as I believe in openness and honesty and would like to see OPEN DIALOGUE. All I want is a lower dosage of the drugs and they even got involved in pushing drugs themselves and now they are involved in determining whether someone can be delayed their drugs. Everyone was smiling at me at the hospital. They were either amused at me or else perhaps they thought “she deserves what she has coming”. Only God can decide this but I want everyone to know that I am very happy right now, Elizabeth is content and so is her cat.

Susan

Some more legal information for you. Please pass this on to anyone in your group who believe their relatives are being given experimental treatment on wards.

Denying your daughter access to medication on the grounds that she is at home and not in the care home is a violation of her human rights. Article 3 is an absolute right and allows no derogation. Various interpretations of Article 3 exist, however, depending on the definition of inhuman or degrading treatment. Doctors have a duty to draw attention to cases of inhuman or degrading treatment. For example, one may be obliged to inform the appropriate authorities if one felt a patient had received grossly inadequate medical or nursing attention on a hospital ward, or if the delay of an operation for logistical reasons had caused a patient undue pain or distress. Patient advocacy is particularly relevant for vulnerable groups, including children, the elderly, the mentally handicapped and the poor, who may be unaware that their rights have been violated, or are unable to seek remedy for their complaints.

Treating PTSD as refractive schizophrenia is perhaps the greatest error in modern psychiatry and cause untold suffering and waste of resources. Giving patient huge doses of Clozapine or other atypicals when low doses of Risperidone can control the symptoms is absurd and a terrible indictment of psychiatric ideology. Many patients currently dose to the maximum could benefit from a low dosage if the shrinks would simply think beyond the DSM and their rigid and irrational ideology.

Risperidone is a better drug than Clozapine its is active at far lower doses and is not associated with Agranularcytosis. It acts on the same neurotransmitter as Clozapine and i am convinced that this action is so different that the normal diagnoses of schizophrenia are wrong. Almost all other drugs act on the dopamine D2 receptor and cause extrapyramidal side effects such as ataxia and akasthenia. It would not be a major job reducing the Clozapine and introducing Risperidone. I have just seen this done at the local hospital and it worked perfectly well. The human rights law in Tanko v Finland states that if a patient is to be prescribed anti-psychotic medication they are entitled to the best.

Social services cannot override your daughter’s wishes if she is not sectioned and if she wants to stay at home she has every legal right to do so. It is not true that only psychiatrist can prescribe Clozapine. There are restrictions in that it must be dispensed via a Clozapine clinic but there are plenty of these and some GP’s are registered. Lying to patients and their nearest relatives is a serious breach of professional ethics and they must act at all times in your daughters best interests, that includes listening to what she wants rather than deciding that themselves. Failing to prescribe PRN medication is also a serious breach of medical ethics and threatens the well being of the patient. If they are hoping that your daughter becomes psychotic in order to justify reinstating the section that again is an appalling breach of ethics.

THAT CLOZAPINE CLINIC IS CHACE FARM ENFIELD AND HAS BEEN CONFIRMED BY LLOYDS PHARMACY IN GREEN STREET

SOCIAL SERVICES IS SOCIAL SERVICES ENFIELD. I HAVE CONTACTED NEARLY ALL OF THE COUNCILLORS AND NOW I AM GOING BACK TO THE HOSPITAL WITH MY DAUGHTER WHO IS STILL OK. THEY ARE IN BREACH OF MEDICAL ETHICS AND I WISH TO NAME ALL OF THOSE CONCERNED PERSONALLY. NOONE SHOULD DENY A VULNERABLE PERSON THEIR HUMAN RIGHTS LIKE THIS AND TAKE SOMEONE AWAY AND PLACE THEM IN A CARE HOME OWNED BY BY SOCIAL SERVICES NORTHAMPTON AND TRY AND GET MY DAUGHTER SECTIONED AGAIN SO THAT THEY CAN STEP IN AND REPLACE ME AS NEAREST RELATIVE OR M AKE HER A WARD OF COURT I WANT EVERYONE TO KNOW HOW I AM BEING BULLIED BECAUSE THIS SOCIAL SERVICES OFFICE HAVE BEEN WARNED ABOUT HUMAN RIGHTS BEFORE. THEY HAVE TRIED SEVERAL TIMES TO GET RID OF ME AND SPENT A FORTUNE ON PRIVATE CARE FOR NEARLY 3 YEARS IN WALES.

I have just been on the phone to Novartis I spoke to the emergency telephone number, office of which is based in Frimley Camberley. I said I would be prepared to drive down tonight and collect the drugs needed for Elizabeth. I offered to pay for the drugs and offered to pay for a courier if necessary. I explained the situation to the pharmacist and said she had been refused by a young consultant psychiatrist because he said it was 48 hrs and it was not. I gave her the name of the new GP and she gave me the name of a new GP based in Northampton and that was a different name to the doctor I saw with Elizabeth when we came down who I was told was the GP. The GP surgery is called Kingsthorpe. Now Elizabeth has got a new GP who was very nice and efficient and produced a prescription for a week’s emergency supply of the drug. As you can see below this is allowed in an emergency which it is. So I asked now what would be the position with this drug which is essential and should have been provided in the circumstances when the care home refused to release it to Elizabeth (surely anyone could see this is an emergency). Well the pharmacist told me the drug had to be titrated up and that meant being put on a low dose. Well perhaps that is good because I was told that 350mg is a higher than necessary dose when the therapeutic dose of Clozapine is 100mg only. Perhaps that is a good thing. She knew quite a bit about the records of Elizabeth’s prescription and knew that Boots the Chemist were responsible for dispensing this drug but that Boots is not in the local area however again I would be prepared to drive down there and get that prescription. I said surely the Boots could have faxed the local Boots and sent over the prescription in order that I could have collected the drugs – well apparently I was told it does not work like this. So now Elizabeth has been deprived of this drug by the local hospital who flatly refused to help and social services who insisted on her going back to the care home when she wants to be at home refused to release the drugs if I called to collect them in person. They insisted on her going back. I asked who was in charge at Novartis and the person is Susan Price – I am looking forward to speaking to Susan Price tomorrow to see how we can resolve this situation as I have gone to the providers who have an emergency number and can supply the drug and would have greater knowledge than the psychiatrist as they would know exactly how the drug works. I wonder how I get on tomorrow and I will let you all know about this.

I am a very patient person and none of this is affecting me as I am resilient to stress and what is more surprisingly Elizabeth is extremely calm – she was a bit stressed at the pharmacy and that is not surprising as so were lots of other people who were waiting for a long time and complaining. So I could go down tonight to the other hospital but instead I will take Elizabeth there tomorrow – I was told this is the place to go as the local hospital is not a prescribing hospital any more but Elizabeth was hungry and she is very happy to be at home and not in the slightest bit stressed out.

Many of the staff had smiles on their faces in the hospital and when I questioned I did not get an answer. I complained at the wait as I have a cat to feed and needed to get back but it would seem like the consultant psychiatrist had to get together a group of other people no doubt to back him up to the hilt.

I had already spoken to the Director of Mental Health personally in order to get a psychiatrist over only to be told after the Director had left that he could not help me because it was over 48 hrs and it was not. Now it is over 48 hrs and Elizabeth will be taken to the hospital with me tomorrow in another bid to obtain the drugs and the head person of Novartis will be ringing me tomorrow and I will in addition be contacting my MP and my daughter her solicitor and my solicitors. It is wrong to deprive a patient of a necessary drug and in bold below are some details from Novartis on procedures. It is wrong to force someone back to a care home when they do not want to go and want to stay at home.

In addition I have been to the local carers centre and they were very nice and helpful. Elizabeth spoke and said she wanted to be home and also it is cheaper for her to be home than in a care home especially when it is featured in the local paper how much it costs to put someone in a B&B because the wards were overflowing and I recognised nearly all the patients there – still under the MH wards.

The answer is a National Metabolising Programme as if this care is not working and the drugs prescribed are ineffective then tests need to be done before prescribing them in the first place. As my daughter is treatment resistant I am very much in favour of this and see this as being a way to save money for the NHS as treatment resistant = poor or non metaboliser and therefore money is being wasted on drugs that do not work in any case. When someone needs a life saving drug for physical health they are often denied this and yet 14 drugs that do not work have been pushed on to my daughter Elizabeth and I see this as a waste of money.

Here are some of the instructions for Clozapine.

Last of all many decent professionals want to see change in the care system and I appreciate that they are up against a lot of power – I would describe my experience as UP AGAINST A BRICK WALL. However far from being discouraged I am feeling stronger than ever as I want a better care system for everyone in the mental health and I am highlighting in a very honest way what is wrong. PRACTICALLY EVERYTHING. There are good staff, not everyone is bad and they have to put up with a lot however much money is being wasted and I as a mother want my daughter home plus she wants to be home and has said this in front of others without being put under pressure by me.

Yes, a prescriber may write a prescription which includes refills. The pharmacist must receive the current (drawn within 7 days irrespective of monitoring frequency) blood work prior to dispensing Clozaril, for each refill.
3.What happens if a patient is going on vacation or is unable to obtain blood work during an emergency?

A one-week supply of Clozaril may be dispensed without a blood work in the event of an emergency/vacation, known as an emergency/vacation supply. Upon initiation of therapy, up to a one-week supply of additional Clozaril tablets may be provided to the patient to be held for emergencies (e.g. weather, holidays). Clozaril prescribing information (2005).

Two common circumstances that may require an emergency supply of drug include:

– the patient is unable to get to the laboratory for their normally scheduled blood draw.

– vacations or holidays interfere with their normal routine.

The patient must be eligible for weekly, biweekly or monthly blood draws and their white blood counts and absolute neutrophil counts should be stable, relative to the patient’s normal values. It is possible that a patient entitled to a one week supply of medication to receive a 2-week supply which would include their vacation/emergency supply of the drug. A patient entitled to a 2-week supply could receive a total of a 3-week supply which would include their vacation/emergency supply of the drug.

Elizabeth told me she was upset by a member of staff and was not happy at the care home. I was told “we are not speaking to you any more only Mr Bevis”. I have been complaining about the overprescribing of drugs. The essential drugs of Clozapine Bisoprolol and Senna have all been denied to my daughter despite a prescription from her GP. I got the feeling that everyone was smiling there at the hospital – in fact I questioned why. I saw the same old faces back on the wards and Elizabeth now has the chance to come home and she is stable. However if denied these drugs likes she is being denied them then she could become ill and this is wrong that a team should all gang up and behind all of this is the social services and I have received no end of bullying from them. The Manager most of the staff have been around for years. Same old team who stick together and I have had good cause to complain, most of the things are too shocking to put on my blog and I thought there would be better care away from this area but have been proven wrong. If the care is funded locally then there is great interest from social services and they have great control. Social Services have also been involved in trying to push Clozapine at my daughter. They are not doctors and an experienced consultant psychiatrist wrote a report to say she has a different diagnosis all of which has been ignored by social services and the team. They are not medical experts and know nothing whatsoever about the drugs concerned. It is bullying when they exclude you. I have legal papers to point to the fact they tried on more than one occasion to take me to court. They accuse me of encouraging her to stop taking the drugs and that is a complete lie. The drugs are given for a so called diagnosis of paranoid Schizophrenia treatment resistant. There is no bio marker for Schizophrenia – there is no such thing as treatment resistant as this means poor or non metaboliser. There are no test to determine whether someone can metabolize the drugs or not so a patient may never ever get better because they are prescribed drugs that are not doing them any good. I have stood up to them as they were giving Metformine 500mg a day on top of Clozapine which is contra indicated and the GP took her off immediately – now Elizabeth has told me she is on far more drugs than she has ever been on before since coming to the care home and that is one reason I don’t want her to go back there and the fact I know that social services are trying to influence her about her father being the nearest relative however she is free – she is not on a CTO or section and should not be forced to go back when that is what they obviously intend to do because neither myself or her father are nearest relatives whilst she is not on a section. I do not want my daughter sectioned again and I thoroughly support her in her wish to come home. I want everyone to know her solicitor called mine a Dick Head. I want everyone to know we were excluded for the most part from the Tribunal and I did not have the support of the independent doctor there and have a wonderful report which is every bit true and recommends intensive trauma therapy and NOT CLOZAPINE. However I am well aware you cannot just come off these drugs. I am well aware of this and would not stop them myself. Now I am up against a brick wall. I know that the Manager of social services has been contacted. I know the pharmacist has been on to that department. I was originally happy as my daughter was happy with the care home but now I want a full investigation. £200 worth of possessions have gone missing between Cambian and the care home. I have contacted the CQC who can only look at records so they tell me and are not interested in individual cases. This is absolute bullying when no one is cooperating and especially as far as duty of care is concerned I am more than happy to name the hospital and the entire social services team in line with proof of paperwork unless I get these drugs which are much needed tomorrow. Elizabeth is content and happy at home and has her pet cat. Not once has she needed the extra drugs given lunch time. The nurse has also been saying that she looked stressed when she came back to them and that is why the extra drugs were being prescribed.

This is not a nice situation but it is important that is drawn to the attention of everyone and every politician so that things can be improved and especially when someone’s life is at stake and no one could care less. They are deliberately withholding the drugs and it has not been 48 hrs like the young psychiatrist – I have his name and everyone else suggested and I have witnesses – I would like matters to go to court. My daughter’s solicitor has already confirmed that discussions were in hand and the discussions were not on the lines of physical health concerns but if they were questioning displacement of me as the nearest relative and she is not sectioned right now then it is obvious to me that they could end up sectioning her again in order to control. If someone is not on a Section or CTO then they should not be bullied into going back where they could end up being coerced by members of staff when they h ave expressed a desire to come home. Neither should someone be deprived of seeing a report by a prominent psychiatrist of many years experience and denied the chance of new treatment in line with new diagnosis and I have looked up NICE Guidelines to check on this.

AT THE END OF THE DAY THEY HAVE A DUTY OF CARE AND THEY ARE FAILING AS I HAVE A PRESCRIPTION FOR A WEEKS SUPPLY OF THIS DRUG CLOZAPINE AND HAVE HAD THE BLOOD TESTS DONE WILLINGLY AND REGISTERED AND THIS SHOULD NOT HAVE BEEN REFUSDED BY A VERY YOUNG CONSULTANT PSYCHIATRIST.

This kind of bullying with someone’s life and human rights at risk should not go on in a civilised country and now I am going to post this to every politician to deal with as the complaints procedures are failing so many as is the care.

I have spent the entire day trying to sort out about my daughter’s medication one of which is Clozapine and then there is the heart medication and the constipation medication  – she has plenty of the extras such as Lorazepam and paracetamol but has been very relaxed since coming home.  What is so disturbing is that I have got nowhere despite all the out of hours emergency contact numbers and so called out of hours services. 

The Out of Hours service is run by NHS England (111) and they have put me through to 3 GPs, none of whom could help me.  They all referred me back to the care home whose manager refuses to give the drug despite having a supply in case he gets into trouble.  They I approached out of hours social services who say there is nothing whatsoever they can do and advised me to contact the Crisis Team which I did.  When I got nowhere with them I was advised to go down to the local hospital and I went to two and both refused to give a small supply of the drugs.  It is despairing when services such as these let you down when you have a vulnerable person who does not want to go back there where she has been confronted by a member of staff yet again and Questioned as to whether she would prefer her father to be the nearest relative.  My daughter feels under pressure and feels upset as social services who are behind all of this want to get rid of me.  I am not imagining things because I have done my best and all along I have listened and respected my daughter’s wishes.  I have been portrayed as a bad mother when in fact I am most concerned when I saw the drugs sheet and there is suddenly much more drugs being prescribed and was told this was given at Cambian but Elizabeth has told me that she has been told that the extra lunch time drugs are  necessary because last time she came back from her stay with me she looked stressed or words to this effect.    So I now do not have a supply of the Clozapine for the evening and early morning and no one cares.  I was prepared to drive 5 hours to collect this from the care home but the manager is afraid he will be in trouble if he releases this and the deputy manager also refuses  and this is the person my daughter has referred to as putting pressure on her.   My daughter is free – as free as she can be – she has a lifetime of drugging ahead as it stands and has been put on last resort Clozapine against her wishes by the Bethlem. The team are ignoring and dismissing a report by a very highly qualified psychiatrist of many years experience. and I do not like this at all.    I have managed to overturn a section 3 and she was sent to the Bethlem Royal Hospital – she was having a bad reaction to the drugs Quetiapine and Olanzapine which they mixed together and this causes adverse reactions and no wonder it is called the Nat Psychosis Unit – right now they are offering £40 to vulnerable patients and promote Clozapine as the favoured drug and they will go to any lengths to get a patient on it including bribery.  Then she was sent to Cambian in Wales where she was discouraged contact with me and I am the nearest relative.  Prior to this I had a day of harassment whilst at work and they were taking me to court accusing me of not giving the drugs – I have all the papers to prove it.   Then a group of Patients named SOAP who have mostly been cruelly treated (we lost a wonderful member not long ago called Jean Cozens} who took her life from being forced into taking drugs by injection to the point she could no longer enjoy life.  The group got behind me and staged a demonstration and my daughter was moved miles away.  The consultant psychiatrist did not like me and members of the team tried their best to distance me from my daughter and recommended a firm of solicitors to her to replace her existing ones and that solicitor did not come near my daughter and whilst she has capacity sometimes when these drugs are given it weakens a patient to the point where they feel they have no choice but to go along with a team.  All the time I was allocated 1 hrs phone contact supervised only my daughter was texting me but if I spoke to her on the phone she actually said she could not speak and I said why not – is anyone behind this and are they trying to sever contact with me and you and she said “yes”  – she said she could not say whom and my younger daughter confirmed who it was.  So I managed to overturn a Section 3 as the nearest relative as my daughter is of no risk to the public and no risk to herself.  My daughter’s first wish was to come home and the above is her words.  Provided she is taking the drugs – I know she cannot come off and I am not qualified.  I am just a mother.  I have been accused by social services of all these things and have the files to prove it.  

Elizabeth has told her Dad she does not want to go back because of the pressure she is under by a member of nursing staff.  I had previously written a glowing report for this care home and thought although it was not my choice and although Elizabeth was not given a choice and disallowed the chance to stay at any other placement to see if she liked it –  she did like the care home and I respected that.  What I object to is them giving all the extra drugs – the psychiatrist has not once phoned me to speak to me despite my requests and my concerns.  The GP also has not phoned me and I have been to see her – I have been helpful in supplying information as regards past medical history that they did not have.  I have been concerned Elizabeth had diabetes prior to this but the GP went out of his way to be helpful to me and confirmed that he could see no reason why she was on the drug Metformine which is contra indicated.  As far as I know the private hospital were only giving Metformine and Clozapine.  Now she is on heart medication. drugs for constipation, drugs for anxiety which incidentally she has not needed to take once since coming home.  Lorazepam is highly addictive too and should not be given and the Clozapine is too high I have found out it should be 100mg.    She has been calm and happy since coming home and has her cat here.  I thought the care would be better away from this area as it is London but unfortunately it has not been and I have seen even worse – the care has been more like prison –  prison is better than what my daughter has had being forced to take drugs, being deprived of contact with the family or discouraged and now I cannot believe it the care home are involved in doing the same and all the time social services are behind it in yet another attempt possibly to get rid of me. 

Her father phoned today and was very upset at first with me demanding I take her back but when Elizabeth said she did not want to go back and told him what was going on he understood the position. 

So I have spent an entire day getting nowhere and in the whole of London you cannot get this drug anywhere.  In desperation I contacted a wonderful organisation called the COUNCIL FOR EVIDENCE BASED PSYCHIATRY –  under this organisation are good psychiatrists and I just want my daughter to have a good psychiatrist like the one I appointed for the Tribunal who wrote a wonderful honest report and I respect someone like this because this report was wholly accurate and I have since turned to universities – whose advice you can trust as it is up to date.

I have also spent £1000 this weekend on looking at my daughter’s physical health that nobody seems to care about.

Now social services are going to accuse me once again of being an unfit mother and causing my daughter to go without drugs but I have been to two hospitals, I have spoken to three different out of hours doctors through NHS England and I have spoken so many times to out of hours social services.   None of these emergency services could help me and now I have turned to the CEP.  I am thinking about putting out an appeal as to how I can at least get the Clozapine for 1 day – she has not got a supply in the evening and I have the quantities of what she is taking exactly and was told to take this to the hospital and both hospitals refused.  This is London and I have a car and can drive — where in London can I get the drug that has been refused.   If my daughter feels uncomfortable about going back to the care home because a member of staff has put pressure on her then the way I look at it is why should she.  She has rights – she is not sectioned and never should have been – she is not a danger to herself and others and it is wrong of professional staff to say to my daughter that she needs the extra drugs because last time she came back looking stressed and I have heard this kind of thing more than once. 

I would like to clarify that despite all of this I am not stressed but naturally disappointed  –  I am disappointed with this Country and I wish I could move forever to Finland where they have such a thing as open dialogue and they treat families in a decent way and patients get better because they are not forced to take drugs and pinned down and restrained by many members of staff to have an injection. 

I am saddened that people like Jean Cozens are not around today because of this barbaric treatment and tomorrow  I hope so much that it will be possible for me to be at home as I work in order to sort things out as at the weekend you get nowhere.    If only they knew what damage they are doing but at the end of the day it is right that I stand up to this kind of treatment. 

I have heard people say you have to be patient that there will be a slow improvement but it wont happen overnight.  Well I am sorry but this is not good enough   It is not just me but the professionals themselves and I know of some who should be given the highest awards and plenty of funding should be given for the universities concerned who are doing a lot of good work behind the scenes and who are helpful .  This means a lot to me.

If the wards are overflowing and there is a shortage of beds to the point that patients are being put in bed and breakfast accommodation Elizabeth has a home here and has her cat.  I would like minimal direct payments in order that Elizabeth can be integrated into society which would eliminate stigma and there is much fuss about this but in actual fact the main problem is the way patients are treated in general and the families, not all of whom are involved in abuse and yet get accused of this by social services.  At the end of the day Elizabeth is without the drugs for the evening and is very calm and stable and tomorrow I am having to get on to solicitors about this as my daughter is being deprived her medication.  It is pointless getting on the phone to the police to report the missing items amounting to £200 roughly because I know that I will get nowhere.

I want all of this addressed in Parliament because I know that I am not the only one who receives this treatment and you should given support and help not threats of court action and displacement with another family member.  The care of Elizabeth should be paramount.  It may not be an emergency to miss this evening’s drugs however this needs to be sorted out for tomorrow urgently and I think a courier should be sent to collect them from the care home and I would be willing to pay for this.  If I had driven 5 hours or more to collect them the drugs would not have been given to me and that was made very clear.  I think that someone the out of hrs doctor should have been granted the power to demand that the drugs be released but not one of three GPs could do anything. 

The whole system is failing and falling apart as when you desperately need help it is not on offer and you have to spend all day – in fact I have spent nearly 2 days trying to sort this problem out and got nowhere.  

The system needs a complete change and immediate change as well and I do not accept that this takes time and is not possible.