Professor Sir Robin Murray – Professor of Psychiatric Research at the Institute of Psychiatry. Elected a Fellow of the Royal Society (FRS) in 2010. One of the Commissioners
Professor Murray saw my daughter and promised in writing a drug free period of assessment. He referred her to the National Psychosis Unit in Beckenham, Kent. Within a week she was offered Clozapine twice and got very upset. She had signed an advanced declaration. I desperately contacted Professor Murray to beg him for help as a drug free period was promised. I received a letter stating that he was no longer attached to the National Psychosis Unit. I then started to write to him direct but he did not want to know. Within no time the National Psychosis Unit caused psychosis by reducing the drugs too steeply and then a Section 2 was imposed and Olanzapine introduced. Then my daughter was made to be so confused and disorientated she did not even know what drug had been given except it began with the letter ‘M’ – I later found out this is Metformine for Diabetes Type II. She did not even know they gave her Clozapine but I found out an emergency doctor was called just before I arrived back to give her shopping she requested. My daughter has suffered no end of pain at this prison camp where her face was covered in bruises and where they force drug patients and experiment to their hearts content on dangerous drugs:
I cannot believe what I am reading. I am fed up with hearing about Stigma! What is shameful is the abuse going on and I see no stigma – I am proud of my daughter and ashamed of the treatment of patients in the UK. Before being labelled and plied one drug after another Elizabeth was doing OK. She could have made a recovery like someone else in my family who also was labelled and yet now is on top of the world without being on any drugs whatsoever.
“unless properly treated, these psychotic experienced may destroy your hopes and ambitions, make other people recoil from you, and ultimately cut your life short”
I straight could see that it was the anti-depressant Cipralix that was affecting my daughter but still had no idea how dangerous this drug is and the others prescribed. It was only when I read books and researched the drugs that I could see what was to blame and this was nothing to do with any diagnosis. I became sceptical when I saw so many diagnoses in the files. It is harmful in itself to label someone without any scientific proof. I know of people who manage to cope with their illness and no thanks to any of the shocking care on offer which is mainly drug pushing.
The report rightly says that they found a broken demoralised system that does not deliver the quality of treatment that is needed for people to recover. This is clearly unacceptable in England in the 21st Century. Yes! that is why we need alternative care centres such as Chy Sawel and proper assessments by Dr Walsh (Walsh Institute) as well as advice from Dr Ann Blake Tracy regarding how properly a reduction should be made of the drugs so that a patient can have holistic care and not huge quantities of harmful chemicals.
It is unbelievable that it is mentioned that medication is prioritised at the expense of psychological interventions and social rehabilitation – “Furthermore, some wards are so anti-therapeutic that when people relapse and are in need of a period of care and respite, they are unwilling to be admitted voluntarily; so compulsion rates rise.” This is laughable. My daughter was willing to remain at the Nat Psychosis Unit voluntarily but I was looking to have her home as I was so horrified at what I saw. Talk about anti-therapeutic – the grounds are beautiful and facilities good but the grounds are deserted and the facilities are not being used at the Nat Psychosis Unit. I brought a swimming costume for Elizabeth – so this paragraph is not true at all and when I complained no-one could have cared less.
The Commission is right about wards being frightening but the Nat Psychosis Unit was the most frightening experience of all for my daughter and it was heartbreaking to receive call after call from her whilst I was at work in a distressed state.
“People with Psychosis rarely have the chance to choose their psychiatrist and families are not treated as partners in care but have to battle for basic services. Yes – I would agree about not being treated as partners in care as I was excluded and banned and treated like a criminal. As regards choosing their psychiatrist – this can only benefit someone who has some capacity as I have seen capacity can be easily manipulated and besides, what choice is there! There may be one or two good psychiatrists but most of them are just wanting to dish out the drugs.
I have heard it mentioned about the shortening of life between 15-20 years and this is mentioned in the Commission Report – “their physical health suffers and their life is shortened by 15 – 20 years”. I have listened also to a speech by the Dean of the Institute of Psychiatry blaming smoking. Sure smoking is something that mental health patients are drawn to because of the boredom of being on an acute ward where there is nothing much to do especially at weekends. However I pointed out to the Dean of the Institute of Psychiatry it is not the smoking that shortens life but the drugs themselves and this is where steps should be taken to reduce slowly and gradually the drugs, looking at therapeutic care and nutrition and ensuring that correct nutrition is given as many people under the mental health could have underlying health problems and this is why I am paying to have a proper assessment done by Dr Walsh in the hope that the correct care can be given.
It is stated that “the Commission heard from many people who had been helped to recover and go on to live happy and productive lives after one or more psychotic episode. Well I know of people who have done this and are now drug free and that makes me wonder if the correct diagnosis is being given as no proper assessments are made in the first place to see if there is food intolerance -drugs should not be given before it is determined which bio type of depression as the drugs could make that person worse and this is what has happened in the case of my daughter. It is no wonder she is chronic treatment resistant.
There are too many studies without proper action taking place in my opinion and instead of all these reports these experts should come and meet some of the patients and carers and look at the research of Dr Walsh and care in Tornio Finland where they include families by way of Open Dialogue.
The report estimates the cost of schizophrenia and psychosis to society at nearly £12 billion in England alone. Well I am not surprised when they keep some in hospital for 2 years and there is no proper care in the community as that person is on a lot of drugs sometimes and cannot manage in the community and social services do not give the correct level of support. That person goes downhill because they are not eating properly, they have no visitors so they become isolated in the community and are begging to come back to hospital and that is very sad. On admission to hospital drugs are quite often increased and this is the care on offer. The report goes on to talk about saving money by turning users of services into contributors to the economy. Well I happen to know many of these ex patients and they have a lot of offer. If they were on less drugs then they could do more and most want to help others. This is where they should be included as peer support/advocates. Many are highly intelligent but what can they do if they are suffering from ill effects from long term drug use thanks prescribed drugs for their so called diagnosis. The drugs make someone tired and unable to do very much at all. The drugs can cause confusion and that person would need help getting to and from appointments – once again this help is not being given in the community and so many go downhill as a result.
Professor Murray states a change of attitude in each Trust from community nurse to Chief Executive is needed. Well, my daughter was left with no hope and even less when Professor Murray promised a drug free period that was not given and then did not intervene.
He does not mention anything about the shocking Community Treatment Orders only about effective drugs and range of evidence-based psychological treatments.
I do agree that too much is spent on secure care £1.2 billion or 19% of the mental health budget – with many people staying too long in expensive units.
I also agree that families who are carers save the public purse £1.24 billion per year but are not receiving support and are not treated as partners.
“service users and family m embers dare not speak about the condition. 87% of service users report experiences of stigma and discrimination” – well I am only too happy to talk about the abuse going on to some of these vulnerable people who are NOT of risk to the public and are treated appallingly.
There is much that I disagree with about the report
Hearing Voices can come about through severe trauma but to make a diagnosis such as Schizophrenia may be inaccurate. This is why proper assessments should be made in the first place before even given the drugs as these highly dangerous drugs are played down to the patient and after 14 none have worked. None have erased painful memories, none that made Elizabeth well – in fact she has suffered so end of pain by the drugs themselves. She has suffered serious side effects such as Akathisia and many severe symptoms but none of the professionals did anything about this. She suffered panic attacks and anxiety like never before, she suffered dizziness and palpitations whilst on Clozapine.
At the Carers UK conference the professionals were saying there should be recognition of the carer and more communication instead of exclusion.
There are many things I could have added to this report and contested. Before making such a report consultation should be made with the carers and the patients and groups of former patients. A look at the high success rate in Tornio Finland where I would like to take my daughter for her care should be made by these experts.
Also listed under the Commissioners is someone from Rethink – Paul Jenkins – how can Rethink be independent when they have psychiatrists on their Board and they failed to turn up at a crucial appointment when my daughter was in hospital at the Bethlem.
Professor Taylor was someone I wrote to about the shocking treatment of my daughter and I was horrified to see the research going on documented in the wonderful blog on the National Psychosis Unit. To think all this research is going on under their own hospital and yet they propose changes – well I am one who wants to see such change but the report does not even go so far to mention the changes I want to see in everything from proper assessments resulting in a diagnosis to abolishment of CTOs and humane care and Open Dialogue Approach together with former patient involvement as peer support and to stop using patients as human guinea Pigs as at the Bethlem and promoting Clozapine when many patients are stating how terrible they have felt on this drug. This is what the Commission need to listen to and that is WHAT THE PATIENTS ARE SAYING AND HOW THIS DRUG IS AFFECTING THEM.