I spoke very briefly to my daughter Elizabeth today and said we would be down soon to see her however I was concerned – Elizabeth was once again complaining of a strain to her heart. There was no psychiatrist on duty only nurses and it will be awkward for me to ring tomorrow due to travel/work but I am concerned. It is not the first time I have heard this said to me. Elizabeth should not be feeling a strain to her heart at the age of 26. Everything is not alright on this combination of contra indicated drugs. I remember when Elizabeth was at the Bethlem she told me an emergency doctor was called out to her and sure enough when I visited and my visiting hours were cut to just 1 hour which meant the bulk of my time was spent travelling particularly as I did not have a car at that point which is another story – I went out shopping on my own at Elizabeth’s request to get her a few things she needed and when I telephoned to say I was on my way back at approaching the hospital Elizabeth said the emergency doctor had been called out to her. Noone tells you anything – if there is any kind of emergency you would never know as a parent as you are discarded and treated like you are invisible.

If the drugs combination has not been changed since the Bethlem and now my daughter is still complaining of strain to the heart there is no way that this should be ignored. The hospital tried to reassure me that she is being constantly monitored but nothing reassures me as I have in my possession the private test results which speak for themselves and what is more I can produce every bit of evidence to back the fact that these drugs are contra indicated.

So, it is not just a look at the future and placements for Elizabeth so she does not have to spend the rest of her life in hospital because she has become too disabled like some cases I know. I want a proper review of the drugs done and this review should be discussed openly with the family as I do not want my daughter to suffer any more than she has done already and if these are affecting her physical health I do not want anyone in any team to sit back and just do nothing. There is no way that these drugs should be increased or mixed with any other drugs to solve the problem as this could lead to serotonin syndrome.

My daughter Elizabeth has been called a victim of the pharmaceutical industry by the private psychiatrist I appointed.  The private psychiatrist was an Orthomolecular Psychiatrist, qualified to prescribe both the drugs and better treatment such as holistic care but the private psychiatrist who could only visit on a Saturday said quite honestly that at the time my daughter was in the wrong environment.  I remember his visit well and I left him to talk to my daughter whilst I left to go into another room.  I have never seen her so happy that finally here was someone who was taking into account more than just increasing or changing the drugs as they do in hospital.  Yes he was right –  this was the wrong environment but an attempt had been made before that was doomed to failure to reduce my daughter by 50mg.  You just simply cannot just come off successfully in this way.  The private psychiatrist looked at diet, nutrition and supplements as the mind altering drugs drain the body of nutrients and vitamins as I have seen from two lots of private tests I had carried out at the Bio Lab.  Long term physical health of patients are not taken into account and the first psychiatrist to label and come up with a diagnosis told the family that Elizabeth would have to remain on the drugs for the rest of her life.  This is simply not true –  it can be done that someone is taken off the drugs however this needs to be done by professionals and it is not ideal for this to be done in the community.  The shocking thing is that what they do not tell you is that immediately someone is taken off the drugs if they get diabetes and diabetes is something that the drugs can cause.    If a withdrawal is done correctly, the most serious withdrawal symptoms can be avoided but to just reduce by 50mg in the community is not the correct way to go about things and of course failed.  I would agree that my daughter is a victim of the pharmaceutical industry and nothing is being done to help these people and nothing is being done by the press to accurately report what is really going on. 

The victims of the pharmaceutical industry like my daughter are termed as being “treatment resistant”.   When drug after drug has failed after being used as a human guinea pig they are then as a last resort put on Clozapine which they say is a wonder drug!  – far from it in fact and Elizabeth I know has suffered and is suffering still on this drug – strain to the heart, dizziness, tiredness and headaches.  If a patient complains they are just ignored.  It is easier to ignore a patient – who is going to take any notice unless of course they suddenly get diabetes then the professionals have to step in and do something – otherwise it is much easier to just ignore and carry on with the drugging especially if someone is in a hospital confined environment.  Imagine what it must be like to be forced to take drugs for the rest of you life by professionals who have come up with several labels which I am questioning as a mother.   If someone is a victim initially of abuse or rape for instance they may suffer a breakdown but I was amazed when no one seemed to care about the cause of depression rather than just labelling and drugging.  This was care under the local area but once someone moves away from the local area things are very different. 

From the research hospital Bethlem Royal Hospital SLAM patients are often transferred into private hospitals and when all else has failed because of lack of decent facilities, as a mother you think that the private sector has more to offer.  There is no comparison to a private ward and outings and activities on offer as compared to an NHS ward for instance however, this is at a huge cost to the public and at the expense of other facilities within the NHS.  Whether it be care on an acute ward or a private care that is still the same as far as drugging is concerned.  The prescription from the Bethlem has not been changed since Elizabeth has been transferred to private sector care so I heard.    At the Institute of Psychiatry after the debates had ended you could go and speak to people and someone there corrected me when I said it must be costing at least £1000 per week.  Well I have been told it is much more than this and just imaging if someone is held under private sector care for several years.

Initially whilst under local care I became more and more unhappy that Elizabeth was being ignored by the team and was telling me of terrible side effects she was suffering on the drugs yet no one did anything and I remember taking the file to the Priory and asking them if they would take my daughter and I would pay for what I thought was fantastic care.  The Priory told me that “it was too complicated a case”.   I do not see what they mean by this at all – this is a simple case in my opinion and a case where a proper diagnosis needs to be given and treatment and that treatment should not just revolve around the drugs.

I do believe that an acute ward both NHS and private is not always the best place for someone to get better and certainly is not the place to safely be reduced off the drugs.  Surely it would be more humane if something like this was to be done in a remote rural area away from cities and in a peaceful location with the involvement of professionals and peer support – people who truly understand and also it is kinder that a person is not just locked up but that someone is watching and supporting that person whilst they are going through crisis.  The Root and Branch Project in Derbyshire have the solution and so do Chy Sawel who are looking at physical health in terms of diet/nutrition as the drugs drain the body of nutrients.  I as a mother am all in favour of a holistic approach as nothing else has worked and I saw that my daughter was happy when someone listened to her.  This is what my daughter has said to me “I am missing out on my life, Mum”.   “I would like to work, I would like to do something with my life”.  However as far as the Government is concerned they have no clue as to how someone feels or how someone is able to cope on a high proportion of drugs.  

When Elizabeth was living in the community in the scheme I had time off work and visited her.  I discovered a letter on the floor and Elizabeth was meant to see her social worker at a certain time.  I noticed that the team left it for Elizabeth so that she did things on her own however my once immaculate daughter had difficulty in remember appointments and got to the stage where washing and simple chores mounted up but the idea was to allow this so that eventually she would have to step in and do something herself but when I backed out for a while and stopped helping her my point was proved,  nothing was being done and her health and wellbeing was being jeopardised and on this occasion when I saw a letter with a time of the appointment I took her along in the car because I wanted to speak to the social worker as I heard she was trying to persuade my daughter to take Clozapine and she was not happy about this.  All I have ever done is to speak up for my daughter but sometimes this can backfire on you – you can accused of interfering in the care for instance.   Anyway if someone is not able to get to an appointment then how can they get themselves down to the job centre to fill in forms etc –  if Elizabeth was dumped into a scheme like the last one this was meant for people who can do things for themselves and every case is different.  The trouble is the Government do not take such things into account and no one can possibly understand how it feels to be on a high portion of drugs.  Elizabeth has to lie down in the afternoons.  Elizabeth has now lost all her confidence and suffers panic attacks like never before and the reason I am keen to see her out of hospital is I do not think it is the right place either public or private for her to get better.  I do not care whether say a therapeutic community is public or private as long as the care is right and the price must surely be cheaper than being kept on an acute private hospital ward.   The trouble is the NHS facilities if in a town or City may not be the right location but outside of a town/city the NHS could run a therapeutic community if given the funding in a rural location rather than in a  hospital under an acute ward.  However none of the therapeutic communities are offering what I would really like to see right now which only Chy Sawel/Root and Branch Project can offer.  It is not a big house full of mentally ill patients I would like to see but smaller accommodation on a more individual basis with one to one peer support given at all times.  There could be the involvement of companions which are lacking for so many who become isolated, education of those studying nursing, psychology or psychiatry and involvement of the wider community which I believe is the answer to end stigma rather than all these campaigns.  After all it is education for the public to come and meet the patients like my daughter and be involved – only then they can see that was is portrayed in the press is wholly biased and sadly inaccurate in describing the majority of people affected by mental health problems. 

I think it is wrong that the drugs companies do not take more responsibility and I will quote the following:

Joanna Moncrieff – presentation at Stuart Lowe Trust “De-mystifying Psychiatric Drugs:

A Drug Centred Approach:  some drug-induced psychic effects:-

Euphoria;  sedation: – different types;  Emotional flattening;  Relaxation;  Stimulation;  Psychedelic effects;  Cognitive slowing and impairment;  Reduced Emotional Sensitivity.

Adverse effects

Unpleasant;  Impotence and reduced libido; weight gain; diabetes, heart conduction defects; Tardive dyskinesia with mental impairment; reduced brain volume; mental impairment;  death.

Antidepressants are not very different from placebo:

Meta-analyses show small differences on rating scales that are of doubtful clinical significance (kirsch et al, 2002; NICE 2004).

Differences easily accounted for by psychoactive effects of antidepressants.

Many other possible biases:  publication bias, selective reporting, unblinding.

Do Antidepressants improve the outcome of depression:

Long term outcomes for treated depression – poor eg STAR*D study in which only 3% recovered and remained well (Leventhall & Antonuccio 2009, also Goldberg 1998, Tuma 2000; Ronalds 1997.

Conclusions:

Some drugs help some people in some situations.  There is no evidence that they do this by reversing an underlying imbalance or disease.  They are prescribed to many people with little or no evidence that there will be any benefit.  Drugs produce altered physical and mental states.  The harmful consequences of treatment often outweigh any positive effects.

On this conclusive note I would like to add that my daughter Elizabeth is being given Contra Indicated drugs –  I am looking further into this right now –  I have been told that yet people are taken off the drugs in a hospital environment but all I saw at the Bethlem was drugs being pushed and at local level.  I should imagine this is only done when someone has got diabetes instead of an early intervention into matters when a patient complains of serious side effects.  Who cares –  who is taking any notice and when I as a mother spoke up for my daughter just look how I was treated.  The more drugged up the better in order to control and keep someone on a section by saying that person is a risk to themselves just because they need more support.  How many are on such sections – how much is this costing the public especially when more and m ore are being referred to the private sector meaning that the patient is taken away miles away from home and family and kept for up to 3 years.

Here is an extract as regards the treatment under private care:

“I have discussed with h er the difficulties you are reporting with her not answering the phone however currenty she feels she does not want daily contact with yourself as she finds the conversations difficult and struggles to cope with this.  She has consistently reported that she would prefer weekly contact preferably on a Monday evening after 6.00 pm and would like calls supervised by staff.  Please note this is your daughter’s request”.   “It is not true, Mum – I did not say this – I will call the police on them Mum – you are still my Mum”.

“I will help in any way I will, I have seen this pattern many times”  “MHA rules can be easily usurped or manipulated.”

No wonder there are so many under section.  No wonder the NHS A&Es are being shut down and maternity services.  Whilst I have been critical about the psychiatric care it is simply that a ward should not be a place where someone remains for up to 2 years before being dumped back into society without enough support in place.  I am critical because many professionals I have come across sum you up as a bad parent, label you yourself if you dare to challenge the care but the care is all wrong in both public and private sector and the treatment of mental health patients is disgusting.

“Its a travesty – I have been trying to change the system for 20 years”  –  more words said from an expert. 

Well I as a mother would like matters changed right now.   Things are at Crisis point with shortage of beds on acute wards and same patients were returning time and time again – if this was a war situation the Government would immediately step in and act so I do not accept that something cannot be done now. 

I also think that a debate should be called at the IOP inviting as many patients and mothers who wish to see change as possible to discuss what should be done and then waste no time in organising this.  A debate is of no use unless something is being done and it is action that needs to be given.

Another expert writes:

Clozapine is an antipsychotic medication requiring regular white blood cell and neutrophil counts.  It carries warnings for agranulocytosis, seizures, hyperglycaemia, diabetes, myocarditis and other adverse cardiovascular and respiratory effects.  It has numerous side effects including bowel infarction, seizures, hypersalivation, weight gain, constipation, bed-wetting, drooling, colon effects, drowsiness, vertigo, headache, tremor, poor sleep, nightmares, restlessness, agitation, confusion, fatigue, hallucinations, amnesia, paranoia, irritability and obsessive compulsive disorders.  It has been associated with diabetes.  Those receiving Clozapine should have their fasting blood glucose monitored.  Research has indicated Clozapine may cause a deficiency of selenium.

Metformine:  Usually prescribed for Type 2 Diabetes and may be used to treat polycystic ovaries and insulin resistance.  I am not aware of any diagnoses of these conditions.  Metformine does however affect blood sugar and thyroid function.  It suppresses glucose production in the liver.  Side effectsare gastrointestinal upset, diarrhoea, cramps, nausea, vomiting, flatulence, lactic acidosis.  Metformine may antagonise glucagon to reduce fasting blood concentrations of cholesterol and triglycerides, metformine reduces LDL cholesterol and triglycerides. 

This raises questions about diagnosis and treatment.  I have drawn attention to the likelihood of underlying thyroid dysfunction and blood sugar condition.

I have got much more evidence you can be sure –  I am looking into everything right now.  It something is wrong it is not good enough for me as a mother that these facts are ignored by anyone and if any doctor disputes these facts I have more and more papers to prove everything.

Turning to Tescos and Asdas:

Tescos have written reiterating they have donated to MIND “I am sorry you remain unhappy with our decision to donate to MIND but this is our position at the current time.”   It is not that I am unhappy but I just felt that what is really needed is not being provided and a proportion of any donations should be given to Chy Sawel so that they could set up the much needed centre to give proper assessments for the likes of my daughter with facilities to go in and enable the training of 20 doctors by Dr Walsh.  They did say however they would refer my comments regarding donating to their Business Support Team.  What is most lacking is accommodation and choice in care currently not available under either private or public sector in the correct location.  For instance I would happily take my daughter to Finland to Tornio to get the right care.

Asdas responded in a more impressive way in my opinion.  Asdas employ someone I am glad to hear who openly admitted he has had mental health problems.  I was impressed by this that this person telephoned me to speak about my letter and said that whilst he could not authorise funding etc for Chy Sawel he would ensure that my comments were passed on.  Well done to Asda. 

Now I have had a letter from the Assistant of the President of the Family Division.  I have submitted my comments already about the family courts but the letter just stated that he can only deal with cases that come before him in a judicial capacity.  Well I as a mother am looking closely now at the whole picture and I am not satisfied.  Even if my daughter is released from a section  and who knows what will happen, if a CTO is enforced that agrees to the enforced drugging of my daughter on the current drugs at this level then I will have further complaints and my prime concern as the mother and Nearest Relative is for the long term  health of my daughter.   Long term health is a matter of risk – health and safety to the person concerned and I as a mother want this dealt with and if the law does not take this into account then it needs to be changed as the more people affected like my daughter the more strain to the NHS and its facilities if they have to deal with serious long term physical illness.  I just want this acted upon and taken into serious consideration and not just ignored.  

I found the debate very interesting and agreed with some of the professionals.

I got the opportunity to speak myself and reflected on my younger daughter who could not be there with me but said she would come another time. I just mentioned that the diagnosis of Schizophrenia as a child of 13 led to a prescription given whilst under section of Risperidal and that this was devastating to the whole family. I said that she was fine now but even on 1mg she ballooned in weight and that drugs were wrong in dealing with the trauma my daughter had experienced. It was hard to get her off 1mg and she relapsed and was referred back to hospital. I mentioned that the “cure” was a small private school in another area, not the drugs. She eventually came off this low dosage but she has everything to thank that school for and is now on top of the world. This shows mistakes can be made in a diagnosis and that drugs should not be so quickly given especially to a child but I believe it is wrong to force anyone as not everyone is happy to take the drugs due to the serious side effects they may experience. I have known people to get better on their own after 6 months without any drugs. It depends – everyone is different – it is a matter of choice and whilst some are happy to be on the drugs, others are not. Everyone should be treated as an individual and proper assessments done. I had private tests done on my daughter which actually show her health declining. The tests were done at the Bio Lab and this is the second lot of tests I have had done and from the initial test you can see significant decline.

Sick Society:

Whilst there are some mothers who want the drugs for their hyper active children, I believe first of all tests should be done like I had to take a look an intensive look at diet and nutrition. As Peter Bennett of Rehealth discovered -(I believe he was given Home Office funding to carry out research on youth offenders) it was proven that some had food allergies and some had B12 deficiencies etc, copper/lead imbalance. None of these tests are properly carried out as far as I know and my elder daughter has just been put on 14 mind altering drugs on after the other and sometimes several at a time. At the moment she is on Clozapine 300mg and Metformine 500mg and then on top of this I found out Lorazepam was being given and I complained about this. I have looked into these drugs and read books on them and contacted experts who have advised me. I have had some excellent expert advice lately about these drugs being contra indicated. As I did not get a chance to say everything I would have liked about sick society my question should have been – how come someone is taken off the drugs immediately if they get diabetes for instance and yet the test results I have produced show a substantial decline in physical health yet are just ignored. This is not good enough for me and as a mother I want to know where the facilities are for something to be done about this problem. The reason patients are drugged up so much is simply so staff can control them in the confined environment of an acute ward. If there was somewhere like Root and Branch want to set up or Chy Sawel with the involvement of Dr William Walsh there would be proper assessments being done and the other thing is reductions in drugs are not being done properly like I have documented – a leading professional told me you cannot take someone off a huge amount of one drug and mix it with another without causing psychosis and now I am challenging why on earth my daughter is on a section in the first place when this kind of thing would cause adverse behaviour in absolutely ANYONE! I cannot understand why these professionals ignore the physical health of a patient and just concentrate on drugging and if one drug does not work another is given until as I have documented a huge amount of drugs are given and I know people on as much as 1500mg of drugs. These people are kept in hospital – they are not treated fairly. It is wrong that a section should last for years and years without a proper look at someone’s underlying health problems. It is wrong that someone should be written off like rubbish and left in hospital because there are no suitable facilities. Patients are made to take these drugs and are forced under section and then Community Treatment Orders in the community and they can be recalled to hospital if they do not take the drugs but I can understand why they drug people on a ward but surely a ward is not the best answer for those who are unhappy to take the drugs, those who are suffering from serious side effects and health problems. I know only too well as a mother that you cannot just take someone off these drugs and that professionals need to be involved but I am shocked that from what I have seen the professionals do not seem to have the knowledge or else perhaps they know things will fail as they are reducing by too much leading to withdrawal symptoms.

It is a sick society that allows such cruelty and where are the facilities – where would someone go into to be reduced off the drugs. As far as I can see there is nowhere although I have been advised by a leading expert it has been done and will be done in the event of someone contracting diabetes. I think this is disgusting to wait until someone suffers from serious health problems and then what – what if someone dies as a result of the drugs – try finding a solicitor who goes beyond the Tribunals.

As for the Tribunals I have put in my comment on what I believe should be changed and have requested an appointment to see Sir James Munby QC himself so that I can further explain what needs to be done to improve matters. I understand a Tribunal looks at risk to the public, risk to that person – the patient. What about the risk to the patient if the care and drugs are not right and are affecting their physical health. This is why I have turned to Dr William Walsh – enough of this experimentation with harmful drugs – now I as a mother want to see a proper assessment and a thorough look at all the things mentioned on the private medical reports. An expert is also providing me with every bit of scientific evidence I need as regards the combination of contra indicated drugs.

What the professionals need to remember is if they were in my shoes and this was their daughter they would probably be doing the same.

Dr Walsh wants 20 doctors to train up and my daughter has agreed to take part in the kind of research I as a mother would be happy to see. This research looks at diet and sure enough I have noticed that certain foods would affect behaviour. What have I got to lose as a mother by requesting a proper assessment and look at holistic care as everything else has failed and my daughter now is going downhill physically.

No matter how much better facilities are provided under private sector care if the care is still the same and all about drugging at the same level without a review then this is no good. Someone is not going to get better this way and I have gone out of my way to prove this fact and have everything documented in the reports I paid for. I am not the only mother who has tried to help their son/daughter in this way but then the professionals step in and try to intervene in a not very nice way and that could be the entire team who all stick together no matter what.

If a more thorough assessment was done by someone like Dr Walsh then this could save some children being put on dangerous psychiatric drugs and I am in touch with mothers who have autistic children who say the drugs have made them worse and they are better without such drugs.

A professional does not see the suffering like the family do and the other thing that is wrong is that families are excluded and when I got up to speak at Carers UK conference Norman Lamb said he would be doing something about this but I have not seen any improvements. I believe that professionals should be sent to Tornio Finland to learn what wonderful care is being offered there. This is what is needed in the UK.

So, getting back to sick society – this is a society that dishes out drugs to children, vulnerable adults, autistic patients, elderly suffering from Alzheimers and those who are abused who really should have had counselling in the first place. This is a society that labels someone in order that the person concerned can access services, this is a society that does not take into account whatsoever that someone on 800mg say of mind altering drugs cannot function at times. My daughter tells me they are highly sedatory. She has to sleep in the afternoon and goes to bed at 8.00 pm at times. This is no life for a 26 year old who once had a job, once was studying and had a bright future ahead. She was placid, not violent but these drugs do not work for everyone and can have shocking effects on some and Dr Walsh identifies this in his book Nutrient Power and Dr Ann Blake Tracy in her book Prozac Panacea Pandora states the true facts. I as a mother have seen the effects of the drugs on my daughters and know now how harmful they are but to begin with I trusted doctors. I knew nothing about the drugs and it was only when I saw the effects of them that I read lots of books and did a lot of research into matters.

There is too much emphasis on Stigma and the campaigns can actually make matters worse because if ordinary members of the public were to be more involved and psychiatry more open instead of secrecy then people would become educated. I believe that certain newspapers make matters worse and portray patients suffering from say Schizophrenia with violent behaviour and as murderers/killers. Dr Candace Pert tells the truth in her book Molecules of Emotion and so does Professor David Healy – Pharmageddon. I am now reading “De-Medicalising Misery – a very good book I would highly recommend and I have attended a presentation by Dr Joanne Moncrieff who I greatly admire. This professional is someone who had time to listen to all the patients at the Stuart Lowe conference.

When I got up to speak I said I was against the labelling as my elder daughter just gave up when labelled with Schizophrenia. It affected my other daughter badly too and not everyone appreciates a label.

After the debate you could speak to the students and people who had attended and judging by some of their faces not everyone liked what I was saying and some absolutely reacted in a dismissive way. Of course I am critical of the treatment of my daughters however that does not mean I do not think there are any good professionals. I can honestly say there are some good psychiatrists but the bulk are pro drugging and that is just my personal experience. I said the main failure was lack of facilities in the community as someone like my daughter needs to regain her confidence and could not manage in a flat on her own even if there is a member of staff there. A place where she could make friends but somewhere where there is plenty of supervision and maybe one to one peer support and that does not have to be a highly qualified professional. It is friendship that is important and a young person could influence my daughter in the right direction.

There are lots of people I know who have sons/daughters just locked away. One young person I spoke to talked about symptoms and that if someone was sectioned there must be good reason for this. This person refused to even think that any wrong may be happening but training should involve meeting the families and learning more about that person – it is not a qualification at the end of the day that counts because it is real knowledge and interest and that cannot always be clearly indicated in the files that may be far from accurate. There is much money to be made by keeping someone in hospital and after many years – especially private sector and that could amount so I was told to a lot more than I had thought per week. The patient gets to the stage where they become more and more dependant and more and more disabled and then the excuse for not allowing that person out is “a risk to themselves”. Yes it is a sick society that decent care in the community cannot be provided which may be a lot cheaper than long term private sector hospitalisation and there needs to be a specialist centre incorporating holistic care like Chy Sawel as a matter of choice with the involvement of Orthomolecular Psychiatrists and I appointed one of these privately – this person could prescribe the drugs but knew a reduction should be done very very slowly and gradually unlike in most establishments and this is why things fail.

If patients end up with physical health problems as a result of the drugging then they in turn become a burden to the NHS. When is the Government going to step in and do something about this.

As for the most recent comments “she’s not doing herself any favours” well I am just a mother and have watching the decline of my 26 year old daughter and I am not alone in wanting something done about the situation and if there is nothing over here then the Government needs to send someone over to Tornio, Finland to look and see how things should be done here in the UK. The Government could also help by getting Chy Sawel set up as they would be saving money in the long term.

Got back from Madeira late last night.

It truly is paradise there and a wonderful holiday location. I found myself wondering what the care would be like for my daughter Elizabeth especially since people I came across in just a short space of time (a week) seemed very nice indeed and kind. They certainly celebrated World Mental Health Day in style and I was t here to witness the procession through Funchal – I thought this was brilliant.

Elizabeth would have liked it in Funchal and the hotel the Pestano Casino Hotel was brilliant. It is really hard to be back in the UK once again.

I have heard weather conditions are going to be seriously bad in November and this is when I will be driving back to Wales for another meeting.

I have not heard from social services in response to my email and need to chase this up now I am back.

I have written to both Asda and Tescos in response to their letters to me – they are only supporting Mind but where are the facilities to help my daughter. Nothing is being done about this and this is why Chy Sawel needs to be supported.

I have taken good advice from a leading expert who has told me the drugs my daughter are on are contra indicated and I shall now want a full review of her treatment as this combination is clearly harmful and this has been overlooked.

Elizabeth has written to me just a short letter whilst I have been away asking to go to Holland to see her favourite band play.

Elizabeth has also texted me to say she wanted to be taken snowboarding but I am not sure I could manage this – I am not the kind of person not to try something new even if I fail with disaster. I wanted to go on a spectacular ride but the person I was with in Madeira was not happy to go on such a ride – the basket ride. I thought of Elizabeth – if she was there she would have liked such a ride. Instead we just went on a cable car which was nice but I would have liked to experience everything.

When I telephoned Elizabeth I checked on whether she had been showed the report from the independent doctor which contains important information which I cannot state on this blog. I was not happy at all to hear that she had not been given a copy of this report and I think this is very bad indeed. A report made by a professional in the field of doctor should not be ignored by anyone and my daughter is entitled to see and hear what is in this report.

Anyway Elizabeth has sent several texts to me today and the letter was really nice to receive as well. I have bought my daughters nice gifts from Madeira and there was so much to buy there. Unfortunately a bottle of liquer had broken in my suitcase – it was one I bought from Nunns Valley and I was most disappointed. I may well have to go there again and would certainly recommend this wonderful country to anyone.

The place I thought Elizabeth would have been happy was in Porto Santo where they had the most glorious beaches with golden sand. Bearing in mind the peaceful location Elizabeth needs this would be ideal.

I have spent the day doing an enormous pile of ironing and am missing the nice weather already.

The cat Fluffy has missed us very much and is glad to see us back home again. The cat has been looked after by a close friend.

I shall be inviting some close friends round for drinks to try out the fabulous liquers from Madeira.

I will leave you with the latest comments from private sector care:

She……………..You are not doing yourself any favours.

What I as a mother objects to is the way my daughter is being dragged into matters by the team. Why don’t they just focus their anger on me as a mother and leave her out of things. It is not fair that someone should say “she’s not doing herself any favours”.

I am not asking for any favours other than I want my daughter to have proper care and a leading expert has given me advice in addition to that given by the independent doctor and I as a mother am not happy that such advice and opinion relating to my daughter and her care should be dismissed by the team. All I ask is that she be treated fairly.

I know very well that the team could slate me as a mother calling me names openly and discrediting me in every way possible. Well if they want to do this then they can go ahead as far as I am concerned – they have already done this in the files which I have in my possession but why not be honest – totally honest in coming out and saying what they think of me in front of the world. I would more than welcome this kind of honesty even if they make my name like mud. I would rather they do this than keep dragging my daughter into things as she should be left out of matters and be given the full picture as presented by the independent doctor and leading expert. I would have no complaints then – I do not care what the team are saying behind my back but I would prefer to have an open discussion any day. I do not mind criticism as long as it is fair.

Currently in Madeira staying at Pestana Casino Park Hotel which I would thoroughly recommend.  Not all the family here with me right now but this is a place where Elizabeth would like very much but Elizabeth would have difficulty in walking as she had to cling on to us to even walk around the shops when we took her out only last week.  She now suffers panic attacks.  Back home the environment is very different and an environment like this where we currently are is beautiful and peaceful – the kind of place that would benefit Elizabeth.   24 hr care

Elizabeth has asked to come home and I would have her home with the help of Rojene but this fell on death ears!  Elizabeth got no answer and it was a good job I was on hand as the Nearest Relative to read her the report from the independent doctor who did not sadly attend the recent meeting.  Elizabeth has a right to know what the content of this report.

Anyway  In note I have not had a reply from the social worker in response to my email.  In light of the fact the recent meeting was held secretly with all the family excluded and not even allowed to speak,  I asked for written assurance to confirm that no further attempts would be made to replace me as the nearest relative or to apply to the Court of Protection.  If anyone needs protecting right now it is Elizabeth especially from what I as a mother have seen going on.  I am not alone here and there are plenty of other mothers/parents who have suffered in this way – EXCLUDED and for those who think I am to blame – I was thrilled in the first place my daughter was sent to a private hospital – award winning for 2 consecutive years but I have now seen the full picture of what is really going on.

I cannot do anything else right now but despite being in paradise right now Elizabeth is always on my mind and I am sorry she is where she is right now – no one is happy that is for sure.

Just back from Wales visiting Elizabeth and we stayed at the most fabulous place.  A peaceful location and cottage in the location of a farm.  The whole family were together on this occasion and arrived separately.  My younger daughter had sought permission to have Elizabeth come and stay at this fabulous accommodation and surprisingly this was agreed  as it was for 2 nights and never before had this been agreed but also the rest of the family were down and of course would want to see Elizabeth as well.  Things are very amicable within the family and we were united in support of Elizabeth by getting together to join the meeting.

It was late when my younger daughter arrived after a dreadful journey and straight from work.  When I told her that we were expected to go very early in the morning to take Elizabeth back three hours prior to the actual meeting she just burst into tears.  This put me on the spot and I started to think we have had a long journey and this was all sprung on us and I then telephoned the next morning.  When I spoke to the senior member of staff I was shocked at the reaction when I said I would need to get advice on whether it was OK for us to go along so early prior to the meeting – the reaction was “you have to get her back”  –  I then enquired why and I was given a reason and pointed out that my younger daughter was upset and that she did not arrive until really late.  I also pointed out that I needed advice on this – after all the meeting was later.  “You have to  get her back”  –  it then turned into something of a comedy and I said Oh no I don’t  –  she said Oh yes you do and this went on and on.  It was menacing to hear the words “this will go against you”  –  well it is not the first time I have heard this threat.  In the end I received the required advice and was happy to follow this advice and return Elizabeth early but when we arrived the two people who were supposed to be there were not there at all and the first people to arrive were Elizabeth and her sister.  All of us arrived later and all of us sat in the box room for nearly all day long.  It was the first time ever the whole family were united at the meeting.   The meeting took a good part of the day and much was discussed without the family being included.  Elizabeth’s father received a recorded delivery letter inviting him to the meeting whereas I did not.  I had to find out the location of the meeting and details myself.  Elizabeth’s sister was once again upset by the occasion as she had hoped to come and support her sister but was left to sit there in the box room with the rest of the family.  It is one thing that I the mother is excluded but this is unacceptable in my opinion.   Elizabeth wishes to come home and I would have her home and with the help of Rojene 24 hour care I would be able to manage.  If Elizabeth was to come home I would appoint a nutritionist having read the book by Dr William Walsh but the last time I took Elizabeth away from services after a shocking incident there was no help forthcoming and this is what happens.  Apparently everyone is on a section where Elizabeth is and two years is a long time to be away from home and in this kind of environment.  Apparently some are kept for 3 years and if that was the case it would be a total of 5.  I know people whose sons/daughters are still stuck in hospital after much longer and I think this is wrong.  This is why I am trying to support Chy Sawel and it would be wonderful if this could be set up which could help many who the system has failed.  This meeting did not achieve anything like I had hoped and it could go on and on as no one seems in a hurry to do anything.

I have to say the system is certainly an eye opener.  Elizabeth after all this time has not seen a vital report and I made sure I read this report to her.  The report is about her so why did no one in the team read it.  I am sorry but I cannot disclose the contents of the report as it is confidential but what I am saying is that patients are treated like nothing and if a report is about them then they should know what is in the report.  I made sure I did this as Elizabeth is entitled to know.   That is the whole problem with the care system until MH and the law which can be easily distorted and this I have clearly seen.  It is shrouded in secrecy that is the problems whereas in Finland there is honesty and openness in the form of Open Dialogue in a place called Tornio and how I wish we lived there.

Elizabeth was very happy to see and have the whole family behind her.  After spending all day in the box room – the family in its entirety hung around for when Elizabeth was brought out with the drugs which apparented are “contra indicated” so I found out by an expert.  I intend to find out more about this that is for sure.  The nurse who totally overeacted to the fact I would not immediately jump to demands without consent and advice first was on hand to comment reflecting on earlier and the importance of returning Elizabeth on dead time.    It was like a teacher speaking to a child at school.    The rest of the family spent a happy time with Elizabeth apparently in Swansea and then brought her back and then the next day we celebrated a member of the family’s birthday  –  I also got a further ticking off by the member of staff for a minor incident – nothing to do with the drugs of course!  You can imagine how it must be for the patients themselves if this is how I as a mother am treated.  Elizabeth has only got to open her mouth and say the slightest thing and it could be blown out of proportion.  Like for instance her sister-  getting back to the meeting – she had agreed for her sister to accompany her and support her and then we all heard the opposite.  No team members were on  hand in the box room to witness my younger daughter in tears – they were all busy at the meeting themselves discussing things whilst we the family were left to sit there and none of us were allowed to speak a word when eventually right at the very end when only the date of the next meeting will be discussed.  I doubt I will get a copy of the minutes! 

We had a nice day today and spent most of the time with Elizabeth before dropping her off though the weather was not good. 

I do not know whether it is her choice or not but she only gets out twice a day and she seems to suffer panic attacks now which I had not noticed before.  We were out with her today and she could not immediately get out of the car.  The rest of the family and I are worried that the longer the time spent in hospital the more she will deteriorate and lose confidence.

Now I have to beg for more time off work to go down to another meeting which will be arranged shortly.  Some of the family like my daughter had to take time off work unpaid – and nothing much was resolved at all.

In the meantime I have been receiving advice from lots of people and someone extremely knowledgeable has been very helpful.  I am grateful from the help and advice of a leading expert who is extremely knowledge on the drugs and other areas. 

The knowledge I have gained I feel is so important that I should contact Sir James Munby’s office for an appointment to discuss these important issues.  The secret courts are being reviewed right now and hopefully that will mean a change for the better and more fairness.   I wish to discuss the changes that I feel should be made to the current system as I am in touch with many other mothers who are also in the same situation.

There could be huge savings to the taxpayer if something was done about the present system that is for sure.

Elizabeth has now been in hospital for about 2 years and has said “I’ve had enough, Mum”.   Elizabeth misses her family and her cat – she is miles away however the environment is more peaceful than here in London.

For the first time in 2 years I will be allowed to have Elizabeth off the ward for 2 nights, such is the strict control.   The entire family will be going down to support Elizabeth shortly but I will have to share my time with them as well.

I am extremely sad by what I have seen happening.   I have been warned that I am up against a lot of power so this goes beyond the nurses on the wards, many of whom want to see positive change and humane care.  

Mental health patients do not get listened to  – it is all about control.

Sir James Munby QC wants to make secret courts open and I hope to contact him shortly.

I am promoting the need for therapeutic communities –  I believe this is the answer rather than acute wards but of course this should be a matter of choice.  There is virtually nothing in the way of choice and it must be costing a fortune of taxpayers money to keep someone in hospital for a long time.  All I kept seeing was the same faces time and time again every time my daughter was admitted to an acute ward.   Surely something should be done about this situation.

The more I think about it I feel that Elizabeth is not in the right place. You cannot go by a glossy brochure or the title of Best Care provider that is for sure. It was the hospital’s recommended solicitor at the Bethlem who came out and said “same as any other” but I did not wish to believe her as I had read what I dreamt of in terms of care under private sector. I was unprepared for the exclusion/bullying that was to face me. It must be costing at least £1000 a week to keep my daughter under the private sector care but I would not wish for her to be on a shocking ward locally. In fact I do not believe my daughter belongs under any shocking care for mental health simply because the care is not right for her. An acute ward is noisy and volatile – no good. The private sector exclude you if they do not like you and ignore you as a mother and have caused damage in my family. It could be partly them and partly social services as all they have wanted to go is to get rid of me. None of this behaviour on the part of the team is doing an good to my daughter that is for sure. Wherever I go I think of my daughter in that hospital – she is missing out on her life, To make a song and dance about her even going up the road with her family to buy a box of chocolates for another patient – what kind of law allows this to happen. It was like at the Bethlem when not even a visiting room was provided and they would not let her just come down and stroke the kitten I had brought all the way to see her at her request. How evil and cruel are these professionals. The only time the smile was lifted off the teams face was when I revealed I was on the police training course – not once are the team honest enough to tell the truth. I would rather someone be nasty to my face than behind my back.

This is where I had to tell Dr Joanna Moncrieff who I met last night that she was wrong to think that things were getting better. I have personally seen no evidence whatsoever on this.

The Stuart Lowe Charity organised a fabulous presentation with Dr Joanna Moncrieff speaking – it was fabulous to meet her and I fully agreed with most of what she was saying apart from things are getting fairer and better. I in turn introduced myself to her at the end and got up to speak – I mentioned how these chemicals had affected my daughter and my daughter’s comments. Dr Joanna Moncrief mentioned about the Critical Psychiatry network so it would appear there are some honest psychiatrists – if only the majority would join the above. I must get her book the Myth of the Chemical Cure – this is very appropriate. I will later scan some details of the presentation onto the website but would fully recommend anyone to go and listen to what Dr Moncrieff has to say.

Elizabeth would have liked this event that was very nicely organised and very well attended. I would like to volunteer at this wonderful organisation myself especially with Xmas coming up and would like to take Elizabeth along.

Elizabeth telephoned during the week and the first thing she asks after is her cat.  The cat is better than all 14 mind altering chemicals that the various teams have pushed at my daughter.  Elizabeth was thrilled to see her cat recently but I have heard that the consultant psychiatrist was not too happy as she was meant only to be seeing the rest of the family.

The whole family will be getting together soon and I have booked a beautiful farm to stay in.  This is the very sort of place that Elizabeth could get better.  How I wish that I owned a farm but instead I live in London.  Having said that the more I think of it I am becoming more and more concerned .   The fabulous facilities and trips/outings mask disturbing things that have become increasingly evident.

Elizabeth told me a patients scrawled over the notice board in Cambian “psychiatry is abuse”  –  I have been on such wards many times to visit Elizabeth and what strikes me is how normal the patients are – I do not see adverse behaviour  – the only adverse behaviour I have seen is from the staff themselves in some cases.

Anyway Elizabeth said she is really looking forward to seeing me –  I have not had a nice letter inviting me to an important event like the rest of the family. 

Anyway I cannot write too much about what I am about to go through except it is quite shocking what is going on.

Tonight I had a nice evening out with my younger daughter at “The Spirit of Summer” – the venue – BBC Club.  I do not work for the BBC but I thought what they arranged was fabulous and I am very glad I went.  I got the tickets through my gym.  Elizabeth would have liked this very much – if only she was here.  There was one act after another and I was impressed.

Tomorrow I am looking forward to meeting Joanna Moncrieff.  I hope I get a chance to speak to her in person. 

On Saturday I have seen an event I would like to go to in Hyde Park Speakers Corner at 12.00 pm. 

Anyway this is a short blog tonight as it is late and I have to get up in the morning.

I wish I could share the whole picture of what I am going through right now however the truth always comes out in the end and I am in favour of the truth rather than secrecy and this is what I want to speak to Sir James Munby QC about.  My case will be a brilliant example of what is really going on behind closed doors at public expense.

My father showed signs of forgetfulness in the first instance and he did not seem to hear properly.  A diagnosis was not immediately given to my father but the first signs were not evident to me first of all as I had never come across anything like this.  Gradually the forgetfulness and other things became more evident and my father had gone to see his GP – the GP diagnosed him with Alzheimers and he was referred to the hospital ‘s Memory Clinic.  Things had been going on for some time and the first drug he was put on was Aricept.  It was described as some kind of a wonder drug but as time went on, my father did not respond so well to this and was taken off this drug.   My father was an active person – he was always working in the garden shed and even though he worked six days a week, his time off from work was never idle.  My father was Polish and came over to the UK after the War. 

I fought to get care in place for my father who could not seem to manage in his own property but moved in with me and at the time I had two young children.

It still sticks in my mind someone saying to me “he will take over your life”.    My father was the kind of person who could not sit there doing nothing as he  had always led an active life and had made it known to me that he would not be happy in a home.   I took these comments very seriously and went out of my way to get some care in place by way of Day Centres and in the morning Home Care –  I was working part time at the time and bringing up two young children.  First of all the Day Centre which was opposite where I worked took him for a few days but then I had to fight to get more care in place as my father had a tendency to go out walking and get on buses for long rides.  Sometimes my father would be brought home by Police and he was known to them as being a vulnerable adult.   My father was not so happy having been used to a home of his own living in my house with two young children so a flat on ground floor with a little patio garden was purchased for him and it had a warden there.  My father also had an alarm which he frequently pulled to an emergency response unit and one day I was with my younger daughter who was having maths tuition when I got a disturbing call.   “Your father has been in touch – he claims his flat has been ransacked and everything is in a mess.  I suggest you call the police and get round there”.  I told them that my father had been diagnosed by this time as having Alzheimers and that it was possible there was nothing to worry about but I would check it out.    As soon as I could, I drove over – it only took about 10 minutes from my house to do this.  When I got there my father was distressed and talking about the mess of his flat and that he had been burgled but everything was in place and tidy in the flat and I realised that this along with other disturbing signs was an increasing sign of his decline.   My father could no longer be trusted to pick up my younger daughter from primary school and I worked in the afternoons just up the road but by this time she was old enough to make her own way to and from school a short distance away and my father used to go round as he saw it his duty to look after the children but the tables had turned – it was the children looking after him especially my younger daughter who used to get something ready for her Grandad to eat before I got home from work.  My younger daughter also knew that my father would seem to carry a lot of money and it turned out he would go to the Post Office and collect his pension more than once a week.  He had a book and was well known to everyone there but having lost what appeared to be a lot of money, I arranged sadly for his money to be paid in to his bank account.  He had also lost a very nice watch and other things and I had by this time the keys to  his flat as you could not just replace these keys being keys that had to be specially ordered for security.  I did not like having to take over  things for my father in such a way and although when he was in his right frame of mind he had given me consent by way of Power of Attorney to deal with whatever needed to be dealt with the thing he took most hard was not having the pension book.  He reported me to the Police and the Police got in touch and asked if I needed assistance.  I went down to the Police Station to explain my position.  I tried to explain to m y father – it was of course impossible and I complained at the Post Office because of them allowing more than one withdrawal a week from the book leading to loss of money.   So I had to control that and pay the bills, make sure my father had food in as he would buy 6 packets of butter and loads of cooking oil and things that were just not right at all but he never stopped caring for the children and like I say my youngest who was at primary school recognised that her granddad needed help and it was for half an hour each evening that the children would have to return straight home from school as I finished work around  5.30 – 6pm and this was in order that the Day Centre could bring my father round by transport.

It then got to the stage that my father who by this time had every day at Day Centre/transport arranged to take him to and from his home and at weekends I would have him round so care had been increased substantially and I realised that it was not safe for my father to make his own way round to my house as there was a busy main road to cross.   The routine worked well for quite some time that my father would be brought back to his flat and stay there and then I would go round and help him get ready for bed and make sure he  had something to eat.  Every single day there was something I needed to do to help my father. 

The hospital had warned me that taking him off Aricept I would see within a month or so extreme decline and this was so true.  Suddenly my father who was once so active became disabled and needed a walking stick.  Before going to work I would be taking him to the hospital for appointments or his doctor and got a walking stick in place, later a zimmer frame.  Everything was falling on me including nursing care and I would sometimes have to stay round there.  It was suggested many times I just put my father into a care home but I could not do this as it would have been against his wish and the flat was quite suitable.  It was thanks to the Direct Payments Scheme that eventually my father was assessed as needing 24 hr care –  well I managed to get such care.  A typical day would be:

Up around 7.30 am – Home care services would turn up dressing, washing and providing breakfast.

Transport would collect my father around 8.30 – 9 pm to take him to the day Centre where he would remain until 3.00-3.30pm.

A wonderful organisation and charity called Crossroads would come and sit with my father getting him tea and assisting him for a couple of hours every day Mon – Friday. 

At 6pm the Polish carer appointed through Direct Payments would turn up and provide dinner and give the “medication” and help my father into bed.  This person slept on a settee bed in my father’s lounge of his one bedroom warden controlled flat.

Here is the “Medication” list of my father:

Asprin 75mg

Omeprozole 20mg

Movicol

Temazepam

Perindopil

Quinapril 25mg

Attenolol

Quetiapine

Diazepam.

That is quite a list for an elderly person who was nearly 90 years old and now having researched these chemicals I am disgusted by this list.  I knew nothing about any of these drugs before but one of the effects was that my father who was once quiet and placid became the opposite and could be abusive to staff and lash out. 

I soon found there was complete lack of understanding with some members of staff.  The care was working with the regular carers and my father was used to them but did not like it when several members of staff would say “crowd him” at the Day Centre.   Some staff coped better than others but some would complain about my father’s behaviour and lacked complete understanding.  At the  hospital after my father had suffered a heart attack,  my father being a very strong person recovered from this well and the hospital wanted to discharge him immediately but I needed a day or so to get all the services up and running but never should such a conversation have taken place at the bedside with a nurse approaching me as it would seem that my father could understand every single word being said and obviously was not happy being confined to bed in hospital but I will never forget the recognition of his understanding and seeing tears in his eyes.    It is wrong of some professionals to assume that someone even in the later stages of Alzheimers cannot understand what is being said around them.

There was many hospital admissions for my father and I used to struggle to get him in my car which was a people carrier as my father was wheelchair bound and on Saturdays I took him to a wonderful centre run by Age Concern.  I could not do much at the weekends as I had to be there to pick up my father and bring him home and wait for the carers who I had employed by way of direct payments to turn up.  Even going on holiday was impossible as respite was arranged but on one occasion my father had climbed a wall and gone missing – he had walked for miles in his slippers back to his old home crossing major roads in doing so. The woman who was now living in his former home was a  nurse and tried to take him home but each time he would direct her back to his former home.

Looking after my father for ten years or so meant sacrifices had to be made and time was one of them – as he declined, it became more distressing to watch and I had to spend more time with him but I was not going to give up – it was what he would have wanted to stay in his own home.

I would still find time to help my daughters with homework – the eldest by this time was studying for exams.  Elizabeth did not seem to get on with one particular subject – IT and was playing truant from school.  She did not seem happy – her best friend had moved to another area but then I was relieved as she seemed to make other friends and always knew what she wanted to be –  a chef.   I paid for private lessons for the IT and hoped that would be the answer.  I felt that the main problem was my father and my younger daughter who would come home from school with her jacked covered in chalk and her face scratched and refused to talk about it but eventually I got to hear and went up to the school to complain.  It got to the stage where my youngest refused to go to school and no longer wanted to live any more and this got her referred to the doctor and hospital.  The hospital sectioned my younger daughter and diagnosed her with Schizophrenia.  She was sectioned for 2 weeks and I had to arrange emergency respite for  my father at short notice as I could not cope with them both.  When I heard she had been prescribed Rispiridone like my father had first of all been put on I was horrified and complained.  I did not want her to be on these drugs and I noticed she had suddenly ballooned in weight.  My daughter would be called “fatty/psycho and mental” in the street and I was extremely concerned as this drug they had put her on seemed to make her even more anxious and restless.  It did not work at all but she was only on 1mg.  I got dreadfully criticised when I listened to my daughter about her not wishing to take this chemical and the team of course were in favour of continuing this.  She got referred to Gt Ormond St but I started to look at private schools as I felt this was the answer and I used all m y savings to pay for three years of private education which has been the making of my daughter.

Getting back to my father,  I continued to struggle but I am not the kind of person to ever give up.  I managed to focus my mind on other things too and I had plenty to focus my mind on what with certain terrible incidents that had happened relating to my younger daughter but all along I thought Elizabeth was doing OK –  she had been chosen to go to Finland to work as a chef.  I had no worries about Elizabeth then and never could have envisaged what has since happened.  

Anyway my father sadly died in hospital several years ago after a hip operation at the age of 90.

It is very hard looking after someone with Alzheimers and watching them decline and I would praise Crossroads, Age Concern and everyone including two very good social workers who went out of their way to help my father.

It is because of the good social workers under the Adults Division that I tried to get my daughter Elizabeth transferred there instead.  Of course this was refused.

The best thing that helped me was having direct payments for my father – if only just a little bit of this could have been provided for Elizabeth – in front of the EMU group Elizabeth showed lack of understand regarding direct payments but she was never one to ask for anything.  Sadly if you do not ask you do not get and that lead to unfairness – for instance if clear instructions are not given for a trial then nothing is done.  If someone cannot pick up the phone and ask they go without.  There are people stuck on never ending sections that have become institutionalised this way when they are no risk to society but if someone has not got the strength to go through with a Tribunal and appointing and dealing with solicitors and also if a team try to persuade someone otherwise and influence them in their decision then a patient is not being treated fairly at all.   A team have nothing to lose by keeping someone in their establishment for years raking in lots of money – this is the difference – with my father social workers helped tremendously and all I had to do was just keep the records of payments and even if someone cannot do this there is help and support.  Whoever thought of Direct Payments is brilliant but as for Personalisation this is not working under MH as when I heard nothing had been provided after 6 months I stepped in to arrange hypnotherapy – I could have found out the answers in just 1 hour as to what my daughter wanted and then the team could have just provided.  This did not go down well at all but I had witnesses in terms of friends who accompanied Elizabeth and it was like a miracle to see my daughter temporarily cured and this is why I cannot understand why on earth this is not included in NICE guidelines as it worked and what is more my daughter asked to go again.  Why is it like a post code lottery when this is provided by SOME NHS authorities.