“YOU WILL LOSE ME FOREVER MUM IF YOU ARE NOT CAREFUL”

These words were said by my daughter and these words are quite haunting given an article recently in the Daily Mail about a woman who tried to help her father as she felt a care home was not looking after him.  This resulted in the Court of Protection stepping in and taking control in the most damaging way in complete and utter secrecy.  It is amazing such incidents can happen in a so called democratic country.  This has been front page news and quite rightly so but how many more cases – could that be me next!  It is all wrong that cases such as these should be held in complete secrecy without fair trial and the same applies to mental health Tribunals.

In my case, I have listened to my daughter who has been terribly distressed at times and I have tried to get the team to listen.  I did not have a blog like this to begin with but when one incident after another occurred, I became more outspoken.  It is most upsetting to see someone go downhill for a start and be pushed drug after drug to the tune of around 14 different drugs to someone so very young and each drug has had devastating effects and caused much suffering to my daughter.  I have listened to this, seen the terrible side effects and confronted the professionals both in the healthcare and social services – this has not gone down well at all.

I wonder who advised her to visit the GP in the first place who prescribed the drug Cipralix which had a devastating effect on Elizabeth.  I had no idea how dangerous these drugs were and no knowledge of what they could do to someone.  I did see devastating results of a drug given to my younger daughter as a child was put on Rispiridal and diagnosed with a very serious condition.  She was only on 1mg and ballooned in weight which led to further bullying – however it is thanks to the private school I paid for and not to any drug treatment that my daughter got better and has excelled in her life.  Even on 1mg she suffered terrible withdrawal which the team called a relapse and her anxiety increased.  So the drugs made her worse, not better and I have the files for this – because she was a child when put on these drugs which I profusely complained about and backed her I was not portrayed in a good light in the medical files by the team.  I am pleased to say that my younger daughter is on top of the world –  the diagnosis was obviously wrong.  This is worrying as I have come across patients who have been given serious diagnoses that once off the drugs have recovered and living a normal life but have suffered terrible physical health problems – what is if the diagnosis is wrong like in the case of my younger daughter where is the proof?

My view is strongly that drugs are not the answer and that is where I am at odds with the professionals who think this is the answer but it is easy for them to dish out the drugs – they do not see how someone suffers – only the carer or close family sees this.  There is usually an underlying reason for a mental breakdown – trauma is one of the reasons and then there could be underlying health problems to which drugs can exacerbate matters. I would like to see change in the UK in the form of a proper assessment and stricter regulations in terms of just giving out dangerous drugs that you cannot come off easily and are led to believe that  you have to take forever for the rest of your life – this is very untrue however there is no help by professionals for someone to safely reduce of the drugs or good facilities to go into and I am critical of this as the instructions on the drugs leaflets clearly say if you experience any one of the serious side effects from the drugs you should immediately refer this to your clinician.  Well, when you do refer this a patient gets ignored all too often and the answer is to increase the drug or try out another on a “trial and error basis”.  In America there are centres like Alternative to Meds in Arizona, Earth House, Cooper RIIs – where is there such a centre in the UK – the answer is nowhere and this is where the Government need to step in and give help and support to those organisations who wish to provide holistic care and proper assessments with the minimal of drugs as it is the drugs themselves that cause the psychosis as detailed by Professor Healy, Dr Ann Blake Tracy, Dr Candace Pert, Dr Walsh – there are many others who I will also wish to feature on this site.

As regards the Powers of the Team/Social Services:  I have spoken in previous blogs about the powers of the psychiatrist who can manipulate an organisation like Rethink who are linked to the Bethlem Hospital. I was so stunned by this when I investigated and looked to see who was on their Board.

At Cambian there was equal control if not more until a new psychiatrist was appointed.  A psychiatrist should liaise with the family on treatment and not try and influence the patient if they do not like you.  The whole team can be influenced by the psychiatrist so I have seen on more than one occasion.

The next Tribunal is one that I as nearest relative can bring about to contest  the Section 3 in this case after the disastrous Hospital Meeting that did not go ahead.

My object against the Section 3 is very justifiable.  My daughtery was put on this “prison sentence ” by the Maudsley National Psychosis Unit Research Hospital who withdrew my daughter’s drug Seroquel in such a way that this would cause psychosis in anyone.  I sought advice from Dr Ann Blake Tracy and I provided this advice on a cd to the team which was ignored.  Dr Ann Blake Tracy told me that the team of professionals will have known that this would cause adverse behaviour and in any case what actually  happened leading to this section was not that bad and anyone would have reacted this way if trapped in that place.  My daughter wanted to go out in the fresh air and who on earth could blame her. 2 members of staff approached her and tried to prevent this crowding her which is very threatening and I believe she just pushed them out of the way and that was it.  They had taken her off 150mg of Seroquel and mixed it with Olanzapine and are every way at fault so why should my daughter be punished because of their actions.  She was stabilised on the Olanzapine so why produce the drug Clozapine – the last resort drug and then mix it with Metformine for Diabetes Type 2.  I have seen this reason and have documented this.  I got to find about the drugs out when I suggested going running with Elizabeth  What can you do in 1 hr!  I was told that staff could not accompany us because of health and safety reasons and this was when I was told not to go running  behind any bushes as staff needed to supervise at all times –  It was like being treated like a child however a very nice nurse accompanied us and despite the health & safety warnings came out and joined in – not all the staff were bad at this dreadful place that had deserted but beautiful grounds.  This was when I got to find out she was on Clozapine as she could barely walk and I had to hold her hand to almost prop her up and then when I went out to buy some things she wanted I found out that an emergency doctor had been called as she was experiencing heart difficulties – not one member of the team got in touch to say this to me – this was kept quiet.  This leads me to believe that if anything more serious had happened this would have been covered up as well.  It is best to be open and honest in my opinion and to communicate correctly.

Anyway, I have a right to be upset and to voice my opinion about the care as I am not the only one being affected and on behalf of everyone I  believe that changes need to be made to a system that is inhumane.

It is only since a new psychiatrist commenced at Cambian that I have been happy.  This extremely good doctor bothered to ring me back – he may not agree with my views but at least – he has bothered to communicate and even though he is pro the drugs it means so much to me that someone has even bothered unlike the majority.  It would be nice if such doctors from Cambian went along to the next Chy Sawel conference to listen to what Dr Walsh has to say.

It is not just the healthcare that is wrong and harmful to patients, not all of who have been abused by someone in their family but also social services and how they react towards you.

The care at Enfield did not work because the drugs were not right for my daughter – I will soon find out through Dr Walsh which bio type of depression she has.  The local hospital was keen to dismiss my daughter and throw her back time and time again into the community where she was in a scheme designed for people who could look after themselves to a degree and staffed supposedly 24 hrs.  This hospital should only be used short term and not for patients returning time and time again however the EMU group are extremely good and are making much needed improvements and the most important is peer support.   As regards the scheme in the community, unfortunately such a scheme is not right for someone so very vulnerable who has been in hospital for about 2 years prior.  She went missing from this scheme and police were involved.  She was moved up a floor nearer to staff however that was not enough in my opinion.  I was having to do washing, cleaning etc as she was living badly and not responding to the team in the end however she did respond to another resident which is why I think the peer support was necessary.    I was desperate my vulnerable daughter did not go to the hospital for activities or even a drop in centre that was largely unsupervised so many things had happened.  I felt that peer support of the right kind should have been provided by way of direct payments but she was never one to ask and did not understand what direct payments were about in front of Enfield Mental Health Users Group who I took her along to as I felt this was lacking in her care.  I was going to advertise and pay for what I thought was missing ie., correct peer support.  She could not attend meetings and get to and from places on time, the drugs prevented her from doing this – she would forget time or day because of the drugs.  The drugs took away everything from my daughter – they took away her love of running, leaving her with not even the ability to do every day chores unlike before.  She became tired and lethargic and got to the stage where she h ad lost all hope and could not care less any more.   She was not eating well and living off junk food – the condition of the fridge contents etc was bad.  She once had a job, was once studying, once learning to drive – she took part in a charity run –  all this has gone thanks to the drugs.  At first Elizabeth wanted a job – when I could see nothing was being done I tried to help as all I have done is listen.  I  arranged college at the rehab ward as I noticed Elizabeth was artistic and made a beautiful flower arrangement.  Before going in to the class she suffered from panic attacks however you should have seen how happy she looked when she came out of there however not enough encouragement was given with the written work which could have led to a qualification.  I was extremely upset and so was her tutor about this.

I cannot believe that the Bethlem treated my daughter in such a shocking way and then the transfer at such short notice without even leaving the opportunity to say goodbye to a private hospital miles away from home.  She has been there for some time now and I know is not happy on the section and neither am I.   Once again I am speaking up as the Nearest Relative for my daughter’s wishes to be implemented.

I know that a section can be renewed over and over again for up to 9 years and I also know that my daughter is of no risk to the public but the argument is that she is a risk to herself.  This is not true either –  however she would need more one to one support but surely this can be provided when I have seen an agency who provide live in care in your own home.

I like Wales very much – I see it as  being more friendly and more peaceful than London however in I have heard about a new law that is pro holistic care and this is the best thing for Elizabeth.  Less of the drugs and more holistic care as the drugs will cause long term health problems and shorten  her life.  All I want is the correct care in place and this is why I  have turned to Dr Walsh of the Walsh Institute.  Dr Walsh has evidence based research and I am impressed with his book Nutrient Power.  Unfortunately, Cambian returned it whereas I wanted them to keep this book as I specially bought another copy.  Perhaps I should present this to Mr Jeremy Hunt himself along with the book of Dr Ann Blake Tracy and the book by Professor Healy.  Mr Hunt can then do something about this unsatisfactory situation.

Anyway the assessment is being carried out via the Bio Lab in London right now – should be getting results soon and then Dr Walsh can suggest a proper nutritional plan and how things should be done bearing in m ind my daughter’s long term health.  The Tribunal date I am still waiting to hear about.

I had written two emails to advise the social services about the wonderful care I  had found that could allow Elizabeth to live in her own home and that there would be the chance of getting a home there rather than in London for her.   I would be willing to have her home but realise this is not a long term solution and this area is not the best environment because she needs peace and quiet.  Most of all she needs to be independent but this will take time because of past failures in the care and the level of drugs she is on which have been extremely damaging and simply have not worked.  It is crucial that Elizabeth has the right friends and I believe she can be integrated into society whereas locally it was viewed that she would be better off with her own kind.  I disagree with this entirely.  My dream would be to have my daughter at least working in a small capacity but not enough support was given locally to get to and from an interview, to build up confidence.  My dream would also be to have Chy Sawel and other similar places set up especially if Dr Walsh specifies that my daughter has a condition where the drugs are in fact making her worse.  It would be a waste of public money to continue with the supply and pushing of such drugs in the

Anyway I was not happy with social services as no one had got to me regarding my emails where I had detailed this care on offer and am fully knowledgeable at how much was being spent on the scheme which unfortunately did not work out and this would go a long way and would work out cheaper than the hospital.  The hospital are trying to help my daughter do the basics of things like washing etc  however all this could be wasted if the care in the community is not right.  This is my greatest concern.  The care in the community need not be expensive –  if say she was to stay in the area where she is then direct payments could provide the peer support needed and this was hugely lacking.   I tried to provide such support myself and would be willing to contribute.  Such support in terms of say a nursing student or psychology student in the early stages of their studies would be wonderful and beneficial.  There needs to be young people involved and even former patients providing they are getting on with their lives in a decent manner.    Anyway eventually I tracked them down to their offices as whenever I phoned I was told everyone was in meetings and here I was in person.   Two members of the social services team saw me – her social worker who I had never met before and her superior who I had met on occasions before.    I spoke of my concerns about the way I have been excluded and pointed to the fact they no doubt they were aware of this.  This was denied and I then pointed out the fact they had tried to replace me more than once as the Nearest Relative.  I did not get an apology for this and no respopnse at all.  I pointed to the fact that it was wrong my daughter was on a section and tried to explain why I was so upset about it all.  I referred to the fact that the scheme did not work and that my daughter’s possessions were all stolen – KEYBOARD, PLAYSTATION 3, GUITARS, JEWELLERY – very sad that this happened – have heard nothing as to  whether a police investigation had even taken place.  I told them that I would like to see my daughter in her own home and with such agency living in and supported student/type staff of around her own age to take her out and help regain confidence.   It is no good me as a mother doing all of this for my daughter – how is this going to help her long term, however, I do want to know that she is in the right company and not to be excluded like I have been. This is my criticism – when such people ignore phone calls and emails this is not a good sign – I referred to the article in the Daily Mail about imprisonment and I can identify to that and see such a thing as a threat to me because I have been outspoken but all I want as a mother is to know that my daughter is now getting on with her life.  My life has already been deeply affected in the most unpleasant way.  I have told social services that it is extremely damaging to someone like my daughter to have things said about me behind my back that are not nice and to turn her against me or even to sever ties altogether which they would have the powers to do.  “you are still my Mum, I will call the police on them and have them arrested”   – my daughter’s comments to me not that long ago and what she would like is to go to Finland where she spent several happy months.   I have never been to Finland but am very impressed by the care on offer in Tornio where there is huge success rates and would like to see this for myself – this is inclusion of the family and I have seen a dvd on Open Dialogue which is needed in the UK.

I have already lost my daughter the minute she got put on the drugs that altered her beyond recognition. However I never lose hope as with  my father the most upsetting and stressful thing is dealing with teams also I have to say that my father’s social workers were very good for the most part.  The family has been further ripped apart, the rest of the family favoured because the team have not been challenged by them.  I have been the one fighting for decent care and fairness but you should not have to fight.  I am only stating what I hear from my daughter who does not have the strength like I do to speak up for her rights and is too afraid to do that.  If there was such a thing as open dialogue like in Finland then there would be no such problems and at the centre of all this mess is a vulnerable person who can easily be mixed up/influenced and has felt threatened by a team who are desperate I do not see any more of the files.   I can imagine how I have been described anyway but I do not care about this – I care about getting the right care in place and that is holistic care and it is my daughter’s right to have such care especially since she signed an Advanced Statement which was ignored by the Maudsley stating no further experimentation She was forced to go along with what they demanded “it is very strict in here Mum ”  “I am forced to take the drugs” this was done at the Bethlem in such a way she did not know what the name of the drugs were and when I demanded my daughter be told I got wrongly accused of being aggressive and banned – I may have been upset but I was not aggressive and when I requested to see evidence of my so called aggressive behaviour I did not get given the correct parts of the file relating to several letters which had long lists of names of professionals on.  It was even documented that I was standing up at the door threatening staff when I was sitting patiently on the floor waiting for my books to be given back – I was then threatened to be arrested once again.      How is it a good thing to force someone to take drugs – they clearly do not work as Elizabeth still remembers things  that could have better been dealt with by counselling rather than drugs and the result is a diagnosis – a new one which is probably featured in DSM 5 and that is called Chronic Treatment Resistant.  I believe my daughter can get better and live as near normal life as possible and I believe the answer is not to keep her and others locked away in hospital for years on end and that is where Chy Sawel, Soteria and Root and Branch Projects should be incorporated.

All I would like is to see patients have a fair choice and there is none at present in the UK.  If some get on with the drugs then that is good however if someone has adverse reactions then I believe that the correct facilities should be provided like the abovementioned   – I believe that Dr Walsh and Dr Ann Blake Tracy together with Professor Healy should be involved and others as well who are speaking honestly about the drugs.  A new kind of care is needed that is humane and gives choice to the patient.  Former patients could play a significant role in helping others even more so that the professionals as they have experienced what that person is going through.  A therapeutic community is needed like Root and Branch in a rural setting and peaceful location and Chy Sawel do conferences to educate the professionals based on the research of Dr Walsh.  All these schemes should be given Government support and could be the answer to future care for those who are labelled beyond help which I do not believe for one minute.   These schemes should be allowed to be set up without further delay.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: