Monthly Archives: May 2014

Things are going really well. We are all getting on enormously. There are so many people helping me right now as I work full time but I am seeing more and more that Elizabeth is recovering since being at home and regaining confidence. When we did cookery together last weekend she showed she had not forgotten things and showed initiative. Elizabeth surprised friends of mine by automatically offering drinks and doing things to help. Having been institutionalised for so long, Elizabeth is making good progress and is being taken out more often too and is up later and no longer sleeps during the afternoon and that is good. She has also lost some weight.

Due to being in hospital for so long Elizabeth has lost confidence in going out as she was a virtual prisoner at the Bethlem and at Cambian where the entire family were concerned as she seemed to be declining so much. It is quite a job and virtually impossible to get someone off a section 3 from the private sector who keep people as long as 3 years so I heard. Even if it is clear that person is of no risk a Tribunal can be a lengthy process but I succeeded in overturning this and that is despite so many attempts at taxpayer’s expense to get rid of me as the Nearest Relative. Right now I am saving the public money – I am not asking for anything for my daughter and am even paying for her outings and support in some cases where needed. I have heard on the grapevine there is a meeting which does not include me but this is nothing new. Letters come through the letter box or are handed to my daughter in front of witnesses but they are addressed to my daughter, not me. I have appointed an advocate as mediator but no copies of these letters are coming to me. I have noticed that Elizabeth does not pick up the phone like she used to and I was noticing more and more that whilst away contact was becoming less and less and she admitted that the drug was highly sedatory and even say “I do not know if this is doing me any good Mum” but it was not just that drug the care home were giving but a string of other drugs in addition. If someone is deprived of the drugs for several days this particular drug Clozapine has to be very closely monitored and twice a day members of the Home Treatment Team come in – sometimes as late as 12.00 midday and then again at varying times from say 6.30 – 8.00 pm + It is restricting for my daughter as what can we do in the course of a day but on a positive note they have now brought the drug in line with what the previous psychiatrist raised it to (350mg). Of course this is the psychiatrist who is also a GP so I heard who called me a “nasty mother” and her actions meant that it was not only myself deprived of contact but it affected her sister too who was most upset – I had supervised phone calls at Cambian until they received a letter about human rights being abused.

Last weekend I took Elizabeth to a health spa – we had the most wonderful time but because it was Bank Holiday weekend could not get any treatments booked but I am hoping to do this this weekend. It is all about confidence building and not once have I had to use the extra drugs given freely at the care home ie Lorazepam. I have bought over the counter the rest of the drugs but Elizabeth is content being at home and not needed anything extra and has stopped smoking. It is far from being a stressful environment at home and she benefits from seeing a lot of people who have known her for many years and it is therapeutic to have her cat as well. The fact is that Elizabeth was stressed being away from the family as she was worried how everyone was and was panicking if anyone was ill etc.

In our local area, the local hospital has suffered to a great degree and has been downgraded with the Accident and Emergency Departments closed and services transferred elsewhere further afield. The maternity unit has been affected and yet in the mental health I noticed so many of the same faces. There would be more money to spend if the drugs were not pushed so much at MH patients as when I came into the building with Elizabeth trying to get an assessment re the Clozapine, I noticed nearly all the patients being familiar faces and still on the wards. Perhaps they too are “treatment resistant” and if there is no national metabolism programme it is no wonder things are not working properly. I am going to chase up this appointment with Professor Pirmohammed as my daughter is treatment resistant – however this could explain why there was no adverse reactions during the time she was deprived of the Clozapine by the team. It was not me depriving her as social services make out – I even offered to go down a pick the drugs up from Northampton however the drugs were declined by the manager of the care home who was worried he would get into trouble by giving them. Then the Pharmacist at the local hospital came out with a very familiar name to me that has been associated with much of my daughter’s past care – in fact the team have not changed much at all. Nearly all the same people are still involved – a team that has stuck together in the past.

On a more pleasant note I am having a quiet day in today and intend to catch up on chores within the house. I have sorted out the ironing for Elizabeth to do and we will probably go out shopping later and tidy up the house.

The Pros of being at Home:

Being surrounded by friends and family who have known her for years.

Familiar surroundings that she would know and has not lost her mind/memory. She could walk to the corner shop, to the local gym, to the bus stop. Everything is close by.

Being surrounded by friends and family means she gets taken out more often although what I would like to see is people of her own age involved. When someone ends up under the mental health all too often they lose friends and need to start all over again. This is not impossible and I believe in integration.

Being away from a hospital environment and in the home signifies a great deal and past problems were caused by the drugs and adverse reactions to them plus the environment where she was placed did not help.

I will leave you with a comment from a former social worker:
“She will feel more comfortable with her own kind”

I cannot disagree more – what is her “own kind!” Elizabeth is mixing in well with people not associated with MH disorders and besides those who do have so called labels I personally cannot see anything wrong with these people who are highly intelligent – in fact many are very caring an decent people -and I cannot think of anything more damaging to label someone up just to give them drugs and then be told you have to be on them for the rest of your life. When there are lots of labels you cannot help but question things and then when you read in the DSM 5 – there seems to be a label for everyone however the new label for Elizabeth is being conveniently ignored by the team despite the fact there is research to back this label and this is why I am not happy and I as the nearest relative have made sure that my daughter knows all about this wonderful report as she has every right to know. Getting back to these comments in bold – it is no wonder there is such a thing as stigma when a professional comes out with this! I totally disagree with this comment as if there was integration and involvement ie students such as trainee psychologists/psychiatrists for instance – if they were to be involved and come and even stay with the family. I almost feel like recruiting such staff myself through the local colleges so they can really learn as I am sure that judging by what I have come across at the Institute of Psychiatry they are not given the right books or receive the correct training. I certainly have a very nice collection of these together with top level advice and plus they would learn what is really damaging and that is the system controlling the care and services ie THE LAW when the law is not used properly- the bullying and barring of nearest relatives for a start and exclusion resulting in massive legal bills and the fact there is so much success in a small part of Finland is down to Open Dialogue so we are behind the times in the UK and taxpayer’s money is being wasted and A&Es shut down because the system has not been changed in years and it SHOULD BE. WHY SHOULD IT TAKE SO LONG TO CHANGE A SYSTEM THAT IS NOT WORKING.

There is stigma through lack of truth and education and the only way that things will ever improve is if there is inclusion, involvement, open dialogue and working with the families NOT AGAINST THE FAMILIES WHICH IS WHAT SOCIAL SERVICES DO.

Elizabeth was quite rightly upset at being in the position of having to choose between her Mum and her Dad and quite rightly she did not want to go back to the care home and I was not happy that there was such a high level of drugs in comparison to ever before on top of the 350mg Clozapine which in itself I have been told is too high. Then of course there is the issue of the missing £200 worth of possessions. At least nothing goes missing at home.

I am extremely happy she took that decision and everyone around me is happy too as we are all getting on very well and Elizabeth is doing OK. At least I as a mother care about her physical health. There is nothing to prove that I am neglecting Elizabeth and if there is concerns I would appreciate these concerns to be presented in an open and honest manner.

Now that the Home Treatment Team have come and gone Elizabeth and I can plan the day and I am looking forward to tomorrow already as I hope to go back and book some of those treatments we missed out on.

Whilst the nurse was here in the house, Elizabeth had been busy in the kitchen. She had made herself breakfast, fed the cat and I am not the kind of mother to do everything for her – it is only fair she does her own washing and ironing and she does not seem to need prompting for this. There is always someone here in the house but having seen her capabilities I would say confidently that Elizabeth could look after herself in the home. However confidence needs to be built up as regards going out, doing shopping alone and getting to and from appointments may be difficult for her because of the effects of the chemical Clozapine which is highly sedatory and this is why I am disappointed that they have just kept this at the same level seeing as Elizabeth was managing on nothing a while back. A low dose of Risperidone would have been better so I have heard.

For Elizabeth the past years have been an experience of intimidation and constant coercion by teams in the past under hospitals advising her what she should do and shouldn’t do and they can make someone feel embarrassed and awkward. What better solicitor to appoint through the team to replace one already in existence than one who never comes near her! How convenient for the team that she does not have contact with that mother who cares – however during the time that Elizabeth supposedly requested supervised calls at a time I could not phone she was texting me and I have proof.

If Elizabeth wanted to go back to the care home I would respect her wishes however I am sure they would slap on a Section even worse than a Section 3 the minute she was back there and raise the drugs. I have spoken to other mothers who have told me their sons/daughters are on sections that are greater than Section 3 and a prisoner for life. Many people become ill within the care system and disabled due to the overdrugging going on. All I am seeing now is progress and happiness all round and that makes me feel positive and happy. I am in touch with lots of mothers who suffer physical health problems as a result of being so upset at having their sons/daughters on virtual life imprisonment to the point of no return which shows the care is all about control- all this money wasted when A&Es and good services within the NHS are being shut down and of course the savings that would occur if things were done properly with the drug metabolism programme rather than push one drug after the other, several at a time at these poor patient and all at taxpayer’s expense leading to long term physical health problems.

I am looking forward to some forthcoming courses from very good professionals and there are some good professionals who want to see change and I am more than happy to use my example along with many others who would wish to be included as a reason why THERE NEEDS TO BE CHANGE IN THE SYSTEM AND THE LAW FOR THE BENEFIT OF THE WEAK AND VULNERABLE PATIENTS whereas the law protects professionals and allows them to use it to their advantage and this should never be allowed when it is detrimental to the patient and family.

Anyway Elizabeth needs to speak to the team telling them of her decision as she has told the entire family, friends and neighbours and there would not need to be any provisions that cost money.

I don’t rule out that Elizabeth in her current environment could not get back to a life of normality and move on in life and have a job, do something positive. If she is starting to do things on her own accord then with the right support anything is possible.


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 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.



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:


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


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.


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.



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.


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.

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