Archive

Monthly Archives: May 2013

Elizabeth telephoned me yesterday – she was very excited on the telephone at the prospect of myself and her younger sister going to visit and we are undecided on what to do and where to go. Once again she excitedly spoke and suggested several places and said she would like to be with us in the hotel but all depends on the team governed by the previous psychiatrist and I will not know until Tuesday.  The other psychiatrist used to give a quicker decision and was extremely nice in the way he telephoned me back even though he is busy.  I respected this treatment as this is rare – normally you just get ignored or someone like a nurse will ring instead. It is right that a doctor should communicate and if there is any problems speak to you.  It is wrong that someone thinks you are beneath communicating with and may have personal reasons for this which are used against you even when that professional has never met you and is going by things written previously in the files which are all too often totally inaccurate in my opinion having read many of them.

It is natural that I as her mother would wish to take Elizabeth somewhere very nice and make the most of the time together as we do not go down that often and most of the time she is stuck unfairly in hospital when she is no risk to the public or herself but just needs the support which I have found in the form of an Agency called Rojene.  Rojene supply care in your own home 24 hours and bearing in mind everything that has gone wrong when Elizabeth was placed in a scheme locally I need to make sure as the Nearest Relative that my daughter has proper support.  I did this for my own father under Direct Payments.  Whoever thought of this scheme should be highly commended.  It is easy to maintain the paperwork and if you are unfamiliar with working out the wages you can employ a firm to do this.  All the Local Authority needs to do is provide the funding and this they did enabling my father to live an active life up to the age of 90 when he died.  I was able to find wonderful carers and this worked well in conjunction with an agency and Crossroads as well as Age Concern.  I am anxious that Elizabeth mixes in with the right company and whilst I realise she is limited to what she can do – she should be encouraged to some something even if only for a few hours a day.  You cannot expect anything more when someone is on a huge dosage of anti-psychotic drugs but whatever job is given to Elizabeth should be one where it is therapeutic such as working with animals for instance and helping others.  This may not appeal to everyone however, with a bit of incentive I believe it is possible with the right level of support given.  This level of support was not given at local level and now Elizabeth is in a much more peaceful area where the lifestyle is much nicer I think she is in the right place.  Also I have noted that there is a new law in Wales for holistic care.  Mr Hunt is supposed to be interested in this and so why is it that a team are going against what the Health Secretary himself would like to see in place.  Well for a start you need to look at the care in the community as it depends on how long someone has been in hospital as to how they are going to cope.  Elizabeth did not cope and was not happy in the scheme and I cannot say what happened there but I can quite understand.  It is like banging your head together.  Noone wants to communicate and what is wrong is the law as the team at Cambian have constantly tried to say the opposite of what Elizabeth is telling myself, her sister and other friends and members of the family.  This calls into question everything that is going on –  there is no way on earth that Elizabeth would have replaced a perfectly good firm of solicitors I later found out that it was suggested by the team it would be best if she had a Welsh firm and that could be because she had given consent to her previous solicitors at local level that I could be informed of certain things.  I am not interested in seeing the whole content of the file – I already know what could be written about me is not very nice at all –  I have seen past files and have been told by someone in this team about my “past behaviour”  – Surely I as a mother should be concerned then if this is affecting or restricting any rights of my daughter to see her family –  all I was ever interested in was the level of drugs which is probably exactly what they did not wish for me to know however I already knew what drugs she was on as I got to find out and I am  not happy that an off label drug is beign given for weight loss at 500mg.  I was also not happy that other things were given on top initially such as Lorazepam to calm her down when she was distressed.  What is the damage being done to my daughter on these drugs and surely as I have heard from other patients Clozapine is highly sedatory and it is very easy for someone weakened on these drugs to feel bullied and harassed by a team who want nothing but control.

 

“I WILL CALL THE POLICE ON THEM, MUM YOU ARE STILL MY MUM”

 

“I HAVE TO WATCH MY REPUTATION”     “IT IS VERY STRICT HERE, MUM”   “THEY MAKE YOU TAKE THE DRUGS”

The law is doing nothing to protect the patients who can tell what a patient is really thinking and then some can feel threatened into having to agree just like Elizabeth.

Well, I have every right to be upset as a mother – not only have damaging things been said behind my back by a team of experts, some of whom have not even met me but they are causing untold damage to my daughter’s wellbeing by pushing and pulling her in two directions instead of communicating properly directly with me.  Then this action further divides the family and causes much damage.

 

This is all against what the Rt Hon Norman Lamb was saying at the Carers UK Conference and also Mr David Behan gave a wonderful speech and seemed extremely concerned when I spoke to him personally about my feelings. Both of them talked about changes for parents and carers to be included and not excluded and by bringing things out in the open maybe certain situations can be resolved.  Nothing should be kept secret and it is wrong to have secret courts as the public have a right to know what is going on and where money is being wasted.

It was good to get up and speak in front of everyone and I was glad I did it –  I feel I am speaking for many people who are too afraid yet are not happy.  It is a bit like the Whistleblowers of the NHS well the same applies to private sector too as you can all see –  It seems that the team are unclear on aspects of the law in my opinion.  To think a team does not seem to know about my rights as the Nearest Relative – this is where investigations and information should be given to everyone from Social Services to the NHS and the private sector. It is not only the staff being bullied but carers and parents too if they dare to disagree with the team and I believe that such bullying is occurring at the top – senior level.  I have been to several AGM of NHS trusts and I have enjoyed these dos as you get to meet the people who otherwise will not be available to speak on the telephone – are at never ending meetings and then you get an unsatisfactory response to your letter or else nothing at all.  I intend to go back to some of these excellent dos and some have a party atmosphere.  If they can organise this then they are capable or organising decent care – it is not literature that is needed but getting out there to speak to parents/carers groups and most important the patients face to face should be allowed to have their say and what about those like my daughter who  have no say at all –  that is why I am writing this blog as it is right that everything is investigated and changes made especially to the law.

I can tell you that you cannot go by awards of anything like this.  There needs to be a proper rating system by the NHS and that should be based on what the patients say anonymously and also how carers like myself are being treated.  If there are complaints that a carer is bring treated like a criminal and a patient not being listened to by anyone from doctor to social services then the whole system needs to be looked at.

 

Many organisations that are supposed to be independent are domineered by teams as I have seen and in addition to choice in psychiatrist there also needs to be choice in advocates and I am suspicious of those who are funded –  certainly I cannot find anyone who would be my advocate or mediator –  I even offered to pay Hafal and they could not accept this offer.  Where is there an advocate for me that is truly independent?  All I want is to ensure that my daughter is being treated fairly which I do not think she is but then I must patiently wait now for a meeting before the consultant psychiatrist gives permission.  The team have to do what the consultant psychiatrist says and if the consultant psychiatrist says there is a risk or someone is not well enough then that person is denied contact by telephone, visits, leave etc etc.  What when a consultant psychiatrist does not like you and refers to your past behaviour then someone like myself is in trouble that is for sure.

I appreciate I cannot jump to conclusions but I want everyone to know that Elizabeth has texted me in an excited way and telephoned me witnessed by other people to say she is looking forward to going to the Theme Park.    I hope the psychiatrist does not turn around and say “the team have decided that she is not well enough”   Well from the text messages I can prove it is what Elizabeth wants and have witnesses too.

 

It is very tiring to have to challenge and defend yourself when I have lots of other things to do.   I need some notice to plan where to book for the nice weekend.  I have asked 3 times for Cambian’s consent and I will not know until Tuesday and then I get a text from my daughter to say about the overnight stay – what on earth is their problem.   Anyway I shall be able to share that view with everyone very shortly.

The good thing is that I have noticed their head office is in London and I also have looked up the names of those in charge –  if no decision is given next week I shall pop down to their Head Office in person.

Very soon I shall be documenting the DSM 5.  Diagnostic Statistical Manual and this is getting bigger every single year with more and more diagnoses and there is divided opinion.  Well I have offered to speak myself at this conference.  Of course I know that this is something that will be laughed upon when they get my request but I am the last person on earth these experts would ever wish to listen to.  It is evident that they do not wish to listen to anyone but themselves so I await to  hear from the organisers of this huge event.   People in the UK may think that this DSM 5 does not apply to them but this is not true!  I have proof of this in the form of interviews on a DVD.

At least at Carers UK, experts from many organisations from Ministers to Social Services/NHS were invited to speak and to join in –  I believe that the DSM 5 Conference should be organised in the same way as Carers UK so that the experts can  hear about the adverse effects of various treatments and see what they can do to help put things right for the victims of the pharmaceutical industry like my daughter.

 

I have visualised what care I want and have spoken to Mr Lamb and Mr Behan who both agree changes need to be made.  Holistic care is the way forward with minimal amount of drugs given and therapeutic remedies as do not forget many people under the mental health have suffered abuse and they should not have been given the drugs in the first place like my daughter and for those who have been labelled, Dr Walsh may have the correct solution and a fresh look needs to be made regarding the research of Peter Bennett of Rehealth who proved that nutrition could play a major role in recovery of someone and this is the research that my daughter has agreed to take part in.

 

Dr Walsh is looking for volunteers as doctors and I would like to see as many as possible sign up for this training in November and I have handed the leaflet of Chy Sawel to both Mr Lamb and Mr Behan who should look into this care further as I am anxious to have this set up as soon as possible.

It is shocking that there is no decent alternative care centre in the whole of the UK  –  Now is the time for such change.

 

 

Advertisement

My daughter has sent me numerous text messages asking when I will be coming down to see her.

 

I did not see Elizabeth over the Bank Holiday however after the next Bank Holiday I have requested to visit Elizabeth and take her out as she has texted me asking to go to a Theme Park.  There are plenty of nice places to visit in Wales you are spoilt for choice but  am still waiting for consent from the Team governed now by the previous psychiatrist and have no idea whether such leave will be granted.   I have requested three times and have not had an answer.  A response requires a meeting apparently and this is taking place next week where Elizabeth will be quizzed by the team as to whether she really wants to go out with  me or not.  It does not matter if you have written proof by way of text message – a team can say the opposite and deny you the contact with your son or daughter as they see fit.  It is easy for them to do this under the Mental Capacit Act and of course a doctor can greatly influence a patient by putting them in such a position where they HAVE to agree and I do not believe the advocates are truly independent as from what I have seen at the Bethlem, Rethink were constantly used in such a way by the consultant psychiatrist and never once did they attend a daunting meeting involving about 9 professionals which I know that Elizabeth hated.  A patient can be made to feel terrible if a team gang up and they can be shown up in front of other patients.

So this is what my daughter said.

First of all she texted me back as I have requested her to come and stay with myself and younger daughter in a hotel for 1 night and this makes me feel that someone in the team has been speaking to her.     I do not believe the team at Cambian are at all happy about this one night in a hotel and I do not know what their problem is.  I would not wish to take Elizabeth out with me at all if I felt she was that unstable but I have no doubts that she is fine to come out but cannot walk far as she constantly feels dizzy and that is the effect of the Clozapine and high level of drugs she is on with Metformine being given by at 500mg.    To begin with even more drugs were being given but I had to complain about this when I heard Lorazepam was also given on top.

 

So, I have not received an answer from Cambian and will know next week what the outcome of my request is.  If the answer is “No” then my younger daughter will be devasted and extremely upset.  Already the family has been torn apart as I have documented by this team.

 

It will be interesting to see what happens next week as this psychiatrist is the one who has NEVER granted me any contact with my daughter apart from supervised/escorted visits. I do not think that this psychiatrist likes me at all from the way she has spoken to me and the things I have heard.  I hope that the personal feelings of this doctor do not get in the way of granting my daughter time to spend with me by trying to say that she has changed her mind.  Elizabeth has already indicated at the strict control there is under Cambian and certain members of the team have not been able to hide their feelings by the way they have reacted I feel not everyone agrees but are forced to agree.  The previous psychiatrist was wonderful and really nice –  this previous psychiatrist was just temporary and allowed me time with my daughter and always communicated effectively and personally rang me.   I much appreciated this as I have felt totally excluded by the team who have only communicated with the rest of the family and seem not to like me at all and I am not imagining things one bit in this respect.

 

Every visit, every contact with me so far Elizabeth has enjoyed and when I see my daughter I take her out for meals and go out of my way to make it nice.  I am not able to go down that often because of the distance.

 

The last visit not long ago was a home visit for the first time and this went well apart from the burglary at my house and Elizabeth was so happy to see her cat who she misses.   However, the rest of the family who were allowed to see Elizabeth on her Birthday whereas I was not, wanted to see her also and I could have said no to this to be fair.  I know that Elizabeth likes going to her grandmas and did not stand in her way but it meant that I had virtually no time with  my daughter and one night is not enough to travel all that way by car only to be collected the next morning by the team.  Still it was better than nothing and thanks to the previous psychiatrist.

 

I wish to share with you some disturbing comments:

“I have to watch my reputation, Mum”

“Please don’t cause me any trouble as things get back to me”

I get the picture!    so – if I disagree with the team in any way they go and speak to my daughter and tell what I have said or what I am doing.    It is terrible that a team is involving her and repeating anything that could be used against me to my daughter.  Elizabeth has shown signs of fear of going against the team who have control over my daughter.    This is what is going on at Cambian and not just Cambian but the NHS as well in places like the Bethlem.  All this and complete lack of communication is against what Norman Lamb and David Behan were saying as they were talking about inclusion of families not exclusion as this is a common thing in terms of confidentiality and capacity that a team can play on.   So if Norman Lamb and David Behan of the CQC state this then they should do something about it.

As a parent and carer I have every right to say what I think as I have listened to my daughter but then a team can turn around and say that you are interfering in the care.   It is not good when a patient is afraid to speak and tell people what is being said – this patient is made to protect the professionals  but Elizabeth has confided in her sister disturbing things against me that was evident to me all along in that it was not encouraged for her  to have contact with me and that was clearly the case as communication was definitely one sided and not only I felt that but legal professionals too.   When I have asked the Manager of Cambian “don’t you trust me”  I have not had an honest answer –  at one time this manager looked down at the floor and I have picked up on some body language of certain members of the team similar to this like when they brought Elizabeth down for just 3 hours and took her away despite the fact it was Xmas and she would have enjoyed Xmas to spend not only with me for one night but with the rest of the family.  Everyone I had invited to the little party was shocked and horrified by this treatment as it is inhumane.  Anyway I have the impression that within a team there are members that do not really agree but are forced to go along with whatever the Consultant Psychiatrist says or does.

So “I have to watch my reputation, Mum”  – I hope that my daughter is not made to stand out in front of other patients just because I happen to disagree with the whole system but still I have never suggested that Elizabeth stops taking the drugs and I suspect that is the main reason because they have not got a clue how to properly reduce anyone in any case.  As I am not a doctor I could not do this however if only there was decent care as I would like to see her on the minimal of drugs.  I wonder how that doctor would feel if this was a member of her family but Elizabeth is just another number to her and no one can possibly care as much as I do.    I would like to see a proper centre and care of a humane nature set up with proper assessments and holistic care such as Chy Sawel but that does not mean that I suggest she or anyone else stops taking the drugs.   This can only be done under the guidance of a professional doctor in the correct way described by Dr Ann Blake Tracy and combined with treatment by Dr William Walsh.    This cannot be done and I am not even a doctor to suggest this so what is this team panicking about –  it would seem that they suffer from a problem of anxiety!  What they completely fail is to put themselves in my position – how would they react in my shoes.  However, everyone should question that if someone can still remember shocking things that have happened that despite 14 mind altering drugs they have failed to erase such things then my question is –  what point is there in carrying on with such a treatment as the drugs are expensive and also not one of these doctors stops for a minute to think about the long term health of my daughter.  I know people who are deeply affected and then they become in need of care from the NHS that is already being drained of resources.  I am well aware that these drugs are highly dangerous and the risks are not properly explained.  You cannot just come off them but it is a complete lie to say you have to be on them for the rest of your life that is rubbish.   Like with any drug withdrawal has to be done very carefully and very very slowly –  there is no help in the UK at all but Dr Ann Blake Tracy is correct as I have seen the effects of drug withdrawal and NOT ONCE HAVE I SAID TO STOP TAKING THE DRUGS.   However help needs to be given for patients who are suffering terrible side effects – after all the leaflets say you should be able to turn to your doctor but when a patient does do this they just get ignored or get given more and more drugs or a different drug.

 

I must admit that at first I begged for my daughter to go to the private sector as I genuinely felt the care was failing my daughter at local level but I did not expect to be treated like a criminal by this team.

 

I got up to speak in front of lots of professionals at the Carers UK Conference and I told them how damaging it is to a family to be excluded.

“I will call the police on them, Mum – you are still my Mum”  –  these words speak for themselves and then you get the preferred family members telling someone who is very ill and involving the younger sister to keep quiet about a visit as only they were included and I was excluded.  I think this is very sad and that is why I would like a change and choices given to mental  health patients.  If a patient is held for 2 years in  hospital then how can they be expected to just get on with things in the community.   When a patient is drugged up –  the professionals job is to try and get them to do things to make themselves independent and this involves persuasion and to some point bullying.  It is not a case of being lazy on the patient’s part as how do these professionals or anyone come to that know how badly the drugs may be making that person feel.  Elizabeth suffered from lethargy and she was not eating well or living well but if someone is showing signs of decline to the point a team feel that there is any risk to themselves then that team will stay away leaving that person to decline to the point that further hospital admission is necessary or else the patient begs to go back on the ward in desperation.

 

I had a long chat with David Behan of the CQC – it was brilliant going to the Carers UK Conference.  Mr Behan seemed very interested in what I  had to say.  I also managed to hand a leaflet on my website to be passed to Norman Lamb and I hope I get that reply from the Minister’s Office as Carers UK contacted me to say that they wished to get in touch.

 

I feel so strongly about a change in the care system and I am sure that there are many members of very good nursing staff that would also like to see change but they are powerless to do anything because at the top there is intimidation.  However I am not intimidated by any of these powerful people and feel that it is the right thing to do to speak out if you wish to see wonderful changes and an end to a culture of bullying.

I think it is great that there is a blog by Mental Health Cop –  in relation to articles in the Evening Standard I do not believe that the Police should be completely blamed although I have to say that many patients do not have much good to say for them.   The patients should really be looking at the law –  the law is wrong – it is the law that fails to protect the patients and shelters professionals who distort the truth and reality.

 

Today I am meeting with a group of wonderful former patients.  None of them have had a good experience on the wards and yet they wish to help others and I admire this very much.  The group wish for Open Dialogue and this group could be helping by way of peer support.  My daughter would often respond more to someone as a “friend” rather than a bossy controlling member of staff – unfortunately this was what was lacking in  her original care.   The group also wish to bring to the public’s attention what is going on –  the fact is that many people are affected by mental health problems and personally I am not ashamed to bring this out in the open.  I also have plenty of positive things to say about such patients who are extremely brave enough to stand up for their rights.

 

Today no doubt we will be discussing the DSM 5 as there is a conference coming up shortly in London.

 

 

 

Normally on Bank Holiday weekends I would be planning some nice days out and things to do with Elizabeth but this weekend I will be spending mostly alone.  Others are working in the family and Elizabeth is miles away so that means booking in a hotel and driving a fair distance.   I am planning to go down towards the end of May but that is if the psychiatrist allows my visit and of course they can turn around and deny such contact but I wish for everyone to know that Elizabeth has been in touch with me and wishes to go to a theme park.  I have received text messages from her whilst at work but no one in the team has got back to me to confirm this and I have once again written but no reply has been received.    I feel sorry for Elizabeth as she will not see anyone from the family as far as I am aware and will no doubt be stuck on the ward – at weekends such as this usually there are usually staff shortages and staff are not able to take patients out – I wish I could employ someone but unfortunately Elizabeth is on a Section 3 which the team have all renewed for another six months behind my back.    At a time when supposedly Elizabeth had wanted supervised phone calls I have received text after text message which I can prove.  In addition she has told her sister that this is not true at all but she has also said that she feels forced and afraid to say no to the team.    In fact her very words are  “I will call the Police on them – you are still my Mum”.  This shows how damaging things can be when a team gang up against you and someone who is very ill is pulled in two directions and the consequences on the entire family.   It would appear I am not alone in being excluded with the excuse of capacity and confidentiality used by various teams so I heard at the Carers UK Conference.

Elizabeth would have enjoyed days out with me and all the nice things but to go down to Wales is not cheap and I cannot do this every week.  It is lovely though to get out of London occasionaly and I find the environment much nicer than in London and people are friendly there. London is not the best of places for m y daughter to recover as she now suffers from panic attacks and anxiety.

Whilst I am obviously against the drugs – I have seen my daughter become completely disabled to the point she could no longer do basic tasks, she has been experimented on so very much and force drugged by not only the team at Cambian but Bethlem, I would not ever advise her to stop taking them as I am not qualified and coming off a drug you need specialist help and there is nothing in the UK at present.    All I have done is listen to her and I have stuck up for her – to the team she is just another number but to me she is my daughter and watching her suffer with the most terrible side effects due to the drugs various doctors have pushed at her has been heartbreaking.   All along she has wanted the whole family included and yet the team say otherwise.  It is harmful to pull someone in two directions and to say nasty things about me behind my back and that is what has been going on and has got back to me via her sister.  I have also seen the content of past files as well to see what goes on and the team are well and truly protected by the law it would seem but much money is being wasted with the legal processes being unnecessarily drawn out by the team and I am sure that the public would be very interested in and this, particularly when the NHS accident/emergency departments and maternity wards are being closed.  The mental health is draining the system because at local level the care is all about drugs and very little else.  The acute wards are frightening places to be and in my opinion should only be used short term.  If something better was on offer like Chy Sawel then at least patients who keep returning to the ward time and time again will have some choice.

At  Carers UK Conference there was overwhelming support for carers in respect of the involvement of families more and a fresh look at the issues surrounding confidentiality to include, not exclude parents.    I realise in some cases this cannot be done however there are many decent parents who have not abused their sons/daughters that should be included to work closely with the team.  It is damaging for a patient to be influenced against the family and to think that in some cases professionals go by notes alone which may be inaccurate from a previous team instead of meeting with that person and keeping an open mind.  Obviously the professionals are mainly pro drugs and this is where I disagree and would like to see proper assessments first by Dr Walsh and then more humane care put in place with a special look at diet/nutrition/underlying health problems.  There are no grounds to justify a ban or the treatment I have received  because I am not  someone who would attempt to take my daughter off the drugs myself as I am not qualified to do so but I do not want my daughter’s life to be halved or for her to suffer long term health problems and so this is why I wish the correct facilities to be set up in the UK to give patients choice and to respect their human rights and that is why I would like to see Chy Sawel set up/Root and Branch.   There is nothing right now in the UK.  Chy Sawel/Dr Walsh  wish to train about 12 doctors in November and I believe that the Government should send someone along to this conference to see for themselves what they can do to help.   Last time my younger daughter got up to speak and she was given the drugs age 13 which had a terrible effect on her.     The drugs should not be given to children or to the elderly like my father.  They should not be given at all if a proper assessment has not been carried out in my opinion.

I hope that the above wonderful collection of videos gives an insight to professionals in respect of treatment which in my opinion is inhumane in the UK.  Forced drugging and Community Treatment Orders are cruel and evil and not everyone is a risk to the public.  The drugs themselves can cause psychosis as in the case of my daughter and withdrawal is not done properly in the UK.  Dr Ann Blake Tracy gives proper instructions and Dr William Walsh is hoping to conduct proper assessments here in the UK through Chy Sawel in November.   It is interesting to note that bullying plays a big factor in such an illness as I know for a fact.  Also trauma/abuse contributes to the development of Schizophrenia and it is not always the parents involved in such abuse.  All I know is the first cure was drugs in both my daughter’s cases given to a 13 year old at 1mg Rispiridal, given to my elderly father aged 90 – Seroquel, 14 mind altering drugs given to my elder daughter currently on a section miles away from home with multiple diagnoses and the latest – chronic treatment resistant.   It is wrong to say someone has to take the drugs for the rest of their lives however you cannot just come off them and there are no facilities to come off prescribed drugs safely in the UK.  Chy Sawel, Soteria and Root and Branch Project offer me some hope of getting the right treatment for my daughter but first I have to contest the section and the team have tried to manipulate the legal process in many ways.  Now I am just waiting for the date of this and the results of the tests to be sent to Dr Walsh.  I have had to seek treatment outside of the UK as there is nothing here and I hope that the Government listen – I hope I got the message across on behalf of lots of mothers whose son’s daughter’s are kept on never ending sections when they should be given the right kind of care that is not even available in the UK as yet.   The Government should support holistic care and choice for patients but nothing is being done.   Now the Minister’s office has asked to contact me through Carers UK.  I sincerely hope that they will listen and do something as how much is it costing to keep someone locked away on never ending sections.  It is wrong to point the finger at a mental health patient and say they are dangerous.  This is purely ignorant on the part of someone who just reads the negative press without looking into matters further and seeing that it has long since been known that these drugs are highly dangerous and can affect some people very badly and actually cause aggression or suicide and Dr Walsh details the five bio types of depression and the fact that these drugs can actually make someone worse.     Anyone sceptical of this should read Dr Ann Blake Tracy’s book Prozac Panacea Pandora,  Dr Candace Pert – Molecules of Emotion, Dr William Walsh, Nutrient Power, Professor David Healy Pharmageddon and there are many other experts who are now questioning these drugs and the treatment of mental health patients.  The drugs also cause long term health problems, diabetes etc and tremendous weight gain.  Patients are used as human guinea pigs at hospitals like the National Psychosis Unit and I spoke about this to the Chief Executive Officer, David Behan of the CQC – this is against NICE guidelines what is going on there.

http://www.nationalpsychosisunit.blogspot.co.uk/

I attended this all day conference yesterday and found it to be very good bringing together carers, professionals in NHS and social care, university researchers and the Rt Hon Norman Lamb who stood in for the Rt Hon Jeremy Hunt and Chief Executive Officer of the CQC, David Behan CBE.

Amongst the interesting information documents was Policy Plus brochure with the heading “Census shows rise of 600,000 carers since 2001.

Chief Executive of Carers UK commented “family life is changing as a result of our ageing population and the fact people are living longer with disability and long term ill health.  That is true as I have seen in the case of my father who had Alzheimers and lived to be 90.

The brochure went on to highly how pressures and costs of caring can force families to give up work and end up in debt, poor health and isolation.  Well I can identify with that.

“Carers make a huge contribution to our society.  In return the Government is cutting support by £13 million.

I think the bedroom tax needs to be looked at very very carefully as there are some exceptional cases and people are being wrongly penalised.

Personal Independence Payment replaces Disability Living Allowance but these changes will result in almost 10,000 fewer carers being entitled to Carer’s Allowance.

All these changes put further financial pressures on families who are already struggling.

Care in the Home.

This was one thing that worked well for my father who had Alzheimers.   He had deteriorated to the point he could hardly walk and had to be taken out in a wheelchair.  I struggled to get sufficient help in place but managed.  Adults Social Services were good – the social workers were more helpful than those I have come across under the mental health.  So, he had an agency in the morning, day centre every day – Age Concern on Saturdays.  Sunday was spent with the family up to the point he could no longer walk.  After the Day Centre, Crossroads sat with him until the carer I employed turned up at 6pm and stayed throughout the night.  All this care worked extremely well and all I had to do was the paperwork which was easy and there was a firm to do the wages.     I employed more than 1 carer and was involved myself to the degree of nursing care.  Direct Payments is a very good thing in my opinion.  My father had a pension which paid for some of the care.   Of course the NHS care was again drugs – Seroquel and Rispiridal and many other drugs – they made my father unstable and he would lash out – a once placid man was unrecognisable because of the drugs.

Anyway you could get advice on benefits, funding, services, everything to do with caring.  I would certainly recommend this conference to anyone with an interest in caring.

I sat listening to the Rt Hon Norman Lamb but did not get a chance to speak myself during this part of the conference.  I ran out after Mr Lamb as I had brought my leaflets and Chy Sawel Brochures which  just about managed to give.   After that was a section regarding NHS care and social care with prominent speakers   There was the opportunity to speak and I stood up before everyone as the talk had been about carers not being included all too often.  I had plenty to say on this subject and did so.

The last section included a speech by David Behan CBE – Chief Executive CQC.  This is someone I really wanted to see and I managed this just before his speech.  I gave him my leaflet and brochure of Chy Sawel.  I told him about the shocking experiences I have encountered.  I then went on to say that the drugs were no good and that there should be holistic care as choice.  I pointed to Chy Sawel and said “this is the care needed for my daughter  .I mentioned my views on what is going on under certain hospitals.  He looked concerned however I want to see action rather than words.  I pointed to the book Nutrient Power  and the research of Dr Walsh and said that this was what I wanted for care for my daughter.

In all I thought I got the message across and ran out of my leaflets.

I wish to go again next year and hope to see vast changes based on some of the discussions.

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:

http://www.nationalpsychosisunit.blogspot.co.uk/

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.

%d bloggers like this: