My daughter Elizabeth has been in hospital a long time now and has been away from the family for quite some time. I have documented what I see as the shocking treatment of my daughter who was moved away from local care to a supposedly worldwide renowned hospital – The National Psychosis Unit. I have watched my daughter go downhill and be experimented on with drug after drug that has not proved effective – this is why I am against drugging as in some cases the drugs do not work. With a string of diagnoses I have become interested in looking further into everything and have uncovered things that are just not featured in the press. I have come to the conclusion that it is either through fear of publicity or fear of stigma that people resort to silence and I can well understand why because I am not the kind of person who will sit back and do nothing when I see things are wrong. Things are very wrong with the care in the UK – you can hardly call it care – it is a system that is all about control and the people in control are none other than psychiatrists and social services who are often a law unto themselves. Having said all of this I am delighted to say there are a few good people – I unfortunately have not come across many. These people may say that if they spoke out against their profession they would end up jobless – they stay silent because of their families and income but do not like what is going on. Then there are some outstanding people I have recently come across – people who do stand up against their profession and I am proud to know such people. May God praise them.
As far as I am concerned everything on this blog is reported with the utmost honesty. It is a simple blog – I am not a professional and I am just a mother. I do not make out that I know better and that I am one above the so called Professionals however all I want is honesty. I have not seen honesty and I am going to share with you in the hope that things can be improved what I am currently going through.
It is not long now to when Elizabeth is officially off a Section 3. She should never have been put on a Section 3 in the first place. If things had been done fairly Elizabeth would not have been treated the way she was treated going back to the Bethlem Royal Hospital. However things were not fair well before then and there were incidents that I cannot report on this blog that led me to complain. A complaint should be dealt with in a nice manner – it should not be documented that you as a mother are for instance an overbearing woman, over protective – someone who abused her daughter as a child. I can ignore most of the comments but the latter one prompted me to share what I had seen in the files with my younger daughter who showed Elizabeth who was on a hospital ward at the time. “I did not say this” Elizabeth was angry – Elizabeth was on a cocktail of mind altering drugs as always as this is what the care is mainly about in the UK – MIND ALTERING DRUGS. Whilst on these mind altering drugs the team think they can say what they like and they certainly do – if you dare to complain you get slated in the files and accused of being an unfit mother or words to that effect. When files are not lost and actually passed on to the next team they can easily get the wrong impression and this can go on and on and on. The teams are not interested in meeting you and listening to what really happened in the past to that person. It is NO WONDER THE CARE DOES NOT WORK. If the underlying causes of what happened to that person are not addressed it is simple that person will never get better. The team with all their high qualifications have failed to really address the underlying problems because it is far too easy just to drug someone up, control someone and there is money to be made in this “care” and treatment. Private sector hospitals are taking over where the care on the NHS is failing people like my daughter and they are raking in the money to provide care of continuance of drugging but in better surroundings and perhaps nicer facilities. “Whoever thought of this care, Mum – thank you – I hated it where I was” Well I do not deserve thanks for thinking that my daughter would be better off under private sector care because a consultant psychiatrist did not like me and there is nothing like an angry embittered psychiatrist so I have been told by others who have experienced similar problems. A psychiatrist and a social worker gets away with a great deal whereas myself and an ordinary member of the public would be prosecuted. I have never experienced such bullying before but here is a comment from someone in the know – this relates to the replacement of nearest relatives “I wish I had a £ for every time I have seen attempts made to displace nearest relatives.”
How about this – professionals who have spent “many years observing faulty drug withdrawals carried out by psychiatrists who know absolutely nothing about pharmacokinetics or dynamics just as the doctors who prescribe without testing for tolerance, contraindications, concomitant prescribing or drug metabolites these people are a menace – and apparently there are loads of them about. By the way my daughter has been taken off 500mg Metformine a day thanks to me challenging what was going on and my research into contra indicated drugs. My advice to everyone is not to trust doctors if there is hospital treatment involved in addition as the drugs are being prescribed by two different sectors of care and there seems to be no communication and the GP when challenged could see no reason why my daughter was on all of these chemicals.
MESSAGE TO ALL CONSULTANT PSYCHIATRISTS
100mg of Clozapine is a therapeutic dose – how come my daughter is on 350 and how come someone I know is on 800mg? I have today contacted NICE guidelines about this unsatisfactory situation however I think I need to speak to Mr Lamb and Mr Burstow again as guidelines are not being followed and the only thing that worked for my daughter is not even included under NICE guidelines and that is hypnotherapy – so how come this is available under SOME local authorities? Why should there be a post code lottery? Mr Cameron said there is plenty of money to spend as regards the recent flooding disaster but I do not for one minute deprive that going to the flood victims however all this time I have wanted decent care set up in the form of Chy Sawel and still there has been no Government help – it would not take a great deal especially when you work out what is being wasted right now on care for people light my daughter who are written off like rubbish and classed as being TREATMENT RESISTANT. I had originally thought this to be ridiculous but I have since had top level advice that apparently it is far from ridiculous – in fact there are many people who are treatment resistant not only to psychopharmaceuticals but to other drugs and not surprisingly as some people cannot metabolize the drugs and no proper tests are given in the first place The P450 cytochromes play a critical part in metabolising many drugs and just about all psych drugs. If anything inhibits or enhances their effects it can have a very serious consequence for the patient. I could not agree more with this as I have seen nothing but shocking side effects and suffering of my daughter who has been told she has to take these chemicals for the rest of her life. God knows what damage this extreme experimentation of so many drugs has done to my daughter but one thing is for sure this team do not care about my daughter’s physical health otherwise they would work towards a solution.
I am now going to share with you the latest on my daughter’s placement. My daughter is not a risk to society or to herself and has not been for some time and she is soon to be released from section but that does not mean she will be allowed to come home and the reason they wont let her home is because they do not trust me – it does not matter how many times you say you would not attempt to get her off the drugs – they are using this as an excuse – a means of control. The manager of social serveics tried to say the other day that I did not want her home. That is far from true but in the past I have not had support in terms of direct payments and a person centred approach failed to provide ANYTHING. I tried to find out what my daughter wanted via hypnotherapy with a top leading hypnotherapist in Harley street so that they would provide something for my daughter but instead they just tried everything they could to stop this from going ahead and yet it benefitted Elizabeth who asked to go again. It was like a miracle – she was like her old self again and everyone was so happy. I would have Elizabeth home but home is in an environment that is not peaceful – a city like environment and Elizabeth could not even stand going shopping near the hospital where she currently is. This environment where I live could make Elizabeth worse initially as she has not even been let out to the corner shop and suffers panic attacks worse than ever before. After 3 years I thought it would be better for her to go to a farm-like environment – somewhere peaceful before coming home again. However after th4 way Elizabeth has been treated I wonder if home would not be better than where she is now as it is the wrong environment for her also. The whole family were impressed by placements we saw in a country environment different to a hospital or scheme in the community. Elizabeth did not like one placement but the only reason she gave for that was she met no one – everyone was on “allocated time” – in other words Elizabeth did not really get to see this placement properly and it sounded so good. However I got a different opinion when I spoke to one of the staff and she sounded harsh and dismissive towards me as a mother when I approached the scheme as I felt that Elizabeth once again was not being treated fairly. As much as I and the rest of the family liked this and one other different kind of environment to hospital and care home, Elizabeth would have had the family approval as to her decision. However I totally object social services stating IT WAS MY DECISION. Undoubtedly I wanted Elizabeth to go and stay there and see what she thought but she has not been given the chance by social services.
Email from social services:
Please accept our apology for late reply – In regards to the …………………………..it is alright for you to make correspondence with them directly as you or your solicitor may have previously done before. As you are aware I made a referral to them back in October/November 2013 so they still have the details they need to carry out an assessment.”
This email was dated 19th February 2014 and sent by my daughter’s social worker copied in to her Manager.
My email to them:
“When I last spoke to …………..it was discussed that it could not be agreed to paying for 2 placements ie hospital as well as ………………………….
I said that we as a family could pay for a stay at ……………………but heard nothing since and I would like an update of what is going on and so would the family.”
As I heard nothing from social services I contacted the placement today and they wrote to me the following:
“I understand that ………………..is happy with her choice of placement and therefore will be moving there in due course. We do not make a charge for assessment stays at our service. The confusion may have arisen as hospitals sometimes make a charge to accompany patients to our service and we categorically do not make any charge for overnight stays. As ………. is happy with her choice of accommodation for her to visit our service Social Services do not wish to pursue the referral to our organisation I am sorry we cannot be of any further assistance.”
MY RESPONSE TO THIS EMAIL FROM THE PLACEMENT OF TODAY’S DATE:
“I have spoken to ……………at social services. I understand that they are not prepared to pay for a stay for my daughter in addition to the hospital and I have said that I would be prepared to pay and they said in return that they had already made a referral to yourselves and that I should contact you myself to arrange a stay at your placement. She spent 2 days only at another placement but yours was the one she really liked and I do not think it fair if my daughter has not got the opportunity to stay at the placement she most liked. I therefore wondered if you could accommodate my daughter for a couple of days in order that you can carry out a proper assessment and please let us know how much this will be. I appreciate you originally said any referral had to come from them but now social services have told me to contact you direct in this respect. They say that they have already referred my daughter to you but as I am prepared to pay that the emphasis is on me to deal directly with yourselves. I spoke to ………………….her social workers. In the meantime I understand an advocate has been to see my daughter to try and get her decision on the other placement but my daughter told me she was undecided about that and wanted to see what your scheme was like. I only spoke to her at the weekend as well.”
FINAL MESSAGE FROM THE SCHEME:
Dear ………………WE CANNOT ACCEPT A PRIVATE REFERRAL FROM YOU OR YOUR FAMILY AS SOCIAL SERVICES HAVE MADE A DECISION TO FUND A PLACEMENT ELSEWHERE FOR YOUR DAUGHTER. THEREFORE IT WOULD NOT BE APPRORPAITE FOR HER TO STAY OVERNIGHT AT OUR SERVICE – WE CANNOT MOVE FORWARD WITH THIS ASSESSMENT WHEN WE HAE BEEN ADVISED BY …………….THAT ……………..HAS CHOSENTO MOVE TO ACCOMMODATION ELSEWHERE. AS …………IS MOVING TO ANOTHER PLACEMENT WE NOW CONSIDER THAT THE REFERRAL IS CLOSED AND THE ASSESSMENT PROCESS CANNOT CONTINUE. AS I HAVE ALREADY STATED …………..(SOCIAL WORKER)..WAS UNDDR THE IMPRESSION THAT WE CHARGED FOR ASSESSMENT STAYS. THIS IS CATEGORICALLY NOT THE CASE. OVERNIGHT VISITS AT OUR SERVICE THAT ARE PART OF THE ASSESSMENT PROCESS WOULD BE FREE. I AM SORRY THAT WE ARE UNABLE TO BE OF ANY FURTHER ASSISTANCE”
I AM SORRY TOO – I am sorry for all my daughter has gone through – she has not been treated fairly at all by a team of professionals who have created misery within my family. They think they are above God but in fact God is more powerful than any of them. God has given me the strength to stand up to all of them.
I have been thankful for all the wonderful support I have had from complete strangers. I have received both praise and criticism but am telling the truth about everything whether people agree or not with what I am doing my motives are of honesty and wishing to see a fairer system.
I believe honesty is the best policy. If things go wrong with the care I would have appreciated a phone call but instead things were covered up. When I complained this did not go down well. I do not think I would work in a profession that is rife with bullying for all the money in the world.
I praise the honest people I have come across and I have had advice from some people because of my openness however I think it is right to be open and honest. I have been told I should play them at their own game by more than one person but I would much prefer to speak openly and honestly any day and do not want to play games. I just want Chy Sawel set up on behalf of all the mothers who are in despair at the shocking cruelty going on in the name of care in a so called civilised country.
MESSAGE TO SOCIAL SERVICES
You have won! all I wanted was fairness – it would have been my daughter’s decision but she had no choice. You have moved my daughter away but say it was my wish however she had to get away from the local area for more than one reason and you know it. Now my daughter is disabled to the point she needs 24 hr care – the so called care she has received has led someone who once had a job, once was studying, learning to drive doing normal things to lead a live of none existence. She is in bed sometimes as early as 7.00 pm I am naturally upset as you think you are truly doing the right thing by displacing me as the Nearest Relative which you have attempted on more than one occasion. This placement has not been done fairly and you as a team have destroyed my happiness as all I wanted was for my daughter to be treated fairly. If she had been allowed to stay at the other placement which we as a family would have paid for and did not like it and chose the other one she liked anyway that would not have been a problem but like everything that has gone on in this team everything has been controlled and Elizabeth has said “you have to go along with what the team say” Even the solicitor was replaced – then the comments “do you really want your mother to be the nearest relative” YOU CAN DISCREDIT ME AS MUCH AS YOU LIKE AND WHY DONT YOU DO THIS IN PUBLIC AS YOU HAVE UPSET THE FAMILY NOT JUST ME.
The New Psychiatrist:
Actually the new psychiatrist at the private hospital is very nice this time – be bothered to ring me back – it is communication that counts with me but there are certain things that should involve the family and the family are excluded. When I told him I had sought top expert advice from someone who really knows about the drugs and that a therapeutic dosage of this awful chemical Clozapine should be 100mg which is much lower than what this private sector hospital is giving to which he refused to listen. A reduction to this level of course would be risky and could throw Elizabeth’s behaviour off balance but if the team think it is the right thing to do to just plod on with the current treatment of my daughter for sake of convenience this is FAR FROM CORRECT and I have supporting evidence to this that I could produce. At the end of the day social services should not be involved in anything to do with the drugs as they know nothing about drugs. However it is the scientists who really know the full workings of the drugs and how things should be done properly.
THAT IS WHY WE NEED A FACILITY LIKE CHY SAWEL AS NOONE SHOULD BE WRITTEN OFF LIKE RUBBISH. NO WONDER PATIENTS GIVE UP.
I have been to the Carers UK conference and nothing has improved. I even got up to speak and say how it felt like to be treated like nothing – like you are invisible whilst a team play on capacity and confidentiality. Elizabeth has seen my blog and has even written her own comments on it. I do not show her my views on drugs as this would upset her however I have shown her the amazing support she has had from complete strangers and she was so happy.
I hope one day Elizabeth will be well enough to take over this blog and that she will help others in a similar situation but many do not have families to support them and here is a message to all the parents:
FOR THOSE PARENTS WHO THINK THE BEHAVIOUR OF THEIR SONS/DAUGHTERS IS REASON TO TURN THEIR BACKS THINK AGAIN ESPECIALLY IF THEY ARE ON ANTI-DEPRESSANTS OR MIND ALTERING DRUGS. I WOULD RECOMMEND YOU THE BOOKS I HAE READ ESPECIALLY THAT BY DR ANN BLAKE TRACY – PROZAC PANACEA PANDORA