Archive

Monthly Archives: November 2013

I was very pleased to attend this meeting as it gave me an opportunity to discuss mental health care and to bring along information and the wonderful book by Dr Walsh, as well as the leaflet all about Chy Sawel.    I gave copies of my own leaflet detailing the enormous amount of chemicals plied to my daughter Elizabeth and said none have worked and that no thought was given to physical health.  I was able to back this up with proof.

I was led through to a restaurant area with indoor trees and I have to say Mr Burstow listened intently to what I had to say –  none of it good apart from when I described the care that is needed referred to in the brochure of Chy Sawel.  I also told Mr Burstow of the importance of proper assessments otherwise this could lead to mis-diagnosis and wrong treatment.    I said the Government should look very closely at the current system particularly in this regard.  I thought I covered quite a lot, from examples of where care had failed Elizabeth (which I cannot put on my blog) to care in the community and how this is failing so many with acute wards overflowing.  The fact is that  people need more support in some cases where they have been on wards for years on end and not just dumped into the community whilst others become isolated.   He asked why I was against the anti-stigma campaigns so I said that they were not helping my daughter and others who are on sections – the forgotten people.   Mr Burstow said he was attending a meeting with Mr Lamb directly afterwards and I hope they actually do something about this situation as I do not believe anyone should be written off.   I have had some extremely good advice lately from a top expert that I cannot just dismiss and this has made me more determined than ever and I hope that when I go forward with this advice (hopefully the results will be good) I will share this with the world.

Meanwhile I am concerned with Xmas coming up what is going to happen.  Even if Elizabeth is not allowed to see me at Xmas it will be good if she is allowed to see someone in the family – I hope that the rest of the family can bring her down as I will only have two days – Xmas Day and Boxing Day.  Last year we were not allowed to have Elizabeth at Xmas and Xmas was quite a sad occasion.   What can I get for Elizabeth? – she is on a hospital ward and so many things have gone missing –  Elizabeth very much likes music and she would be delighted to know that there are so many musicians/bands that are supporting her via Twitter but she would not be well enough to enjoy a concert because of all the crowds.   Whilst Elizabeth knows I have a blog,  I do not of course show her my outspoken comments regarding what I think of the chemicals she is being prescribed and I have no regrets about these comments – none of the drugs have worked and they are making her go downhill with her physical health.  I am appalled that no one cares about my daughter’s physical health –  just by having blood tests and things like this does not make me feel happy besides I am the last person they would wish to share information with if anything is wrong with Elizabeth’s physical health and the secrecy surrounding the care is something that is not good at all and as I have discussed open dialogue is needed and inclusion rather than exclusion where possible with families should be given.   I cannot wait until Dr Walsh comes over here –  I believe nutrition and diet is very important. 

Elizabeth is not well enough to travel too far – even walking around a very nice shopping centre was too much for her and we had to take her to the cinema instead.  It would be no good me taking her to Central London as Elizabeth would not like the crowds, the escalators/stairs.  There is no way Elizabeth would be well enough in the foreseeable future to return to a normal life in the local area.  It is sad she is missing out on her life –  apparently she asked to go to Finland and that is a country where in a small area called Tornio there is the best care in the world so I heard.  Elizabeth also has happy memories of Finland as she worked out there once. 

It has been over 2 years that Elizabeth has now been in hospital and this is not doing her any good.  I want her released but this is taking so long –  I just cannot understand why things take so long when I could have arranged things in a week..  Elizabeth has asked to come home and I would have her home but this will not be allowed as the team have got it in their heads I will stop the drugs.  

The issues are all around her taking the drugs and the fact they believe I would stop the drugs or persuade her to stop taking them.  How  many times do I have to say I could not even if I wanted to.  I know very well that if a reduction in the drugs was to take place then this would have to be done by experts not me – I am not a doctor.  Besides a leading expert told me it could take at least 4 years.

I said to Mr Burstow that it is a shame there is nowhere where someone can be reduce or come off the drugs safely  even if they are misdiagnosed.  There are people that know the drugs inside out and I am afraid from what I have seen I am not too sure whether someone like a GP or a psychiatrist knows the full workings of the drugs and if there was to be any changes in her treatment I would have to see that my daughter is referred to a bio medical scientist who would knows all about the drugs.  Certainly an expert like this should be involved as there have been cases of suicide when reductions of drugs have been made incorrectly leading to suicide. There would be no chance of this because the outdated law of the UK is all about enforced drugging and CTOs which is another thing I discussed with Mr Burstow – how wrong this all is.  I am obviously against this as I feel this is cruel and abusive and believe that proper facilities should be provided in cases where there is doubt and also that drugs should be a matter of choice for individuals rather than enforced.   I think I had come to Mr Burstow’s attention with my outspoken comments on the Bethlem. – this place my daughter called prison where they were supposed to give a drug free period of assessment which was done completely incorrectly in my opinion.  I would like to see what has been written about me in their files after the way I have been treated. 

One of the main topics of discussion with Mr Burstow was the law itself and how badly this needs to be changed.  This is the most urgent thing of all in my opinion.

I hope that I see such changes as per my discussions, as I can speak for many other mothers who are not being so outspoken but are extremely unhappy too.  I would have liked to bring with my a group of these mothers to meet Mr Burstow but then this meeting would have gone on all day long as there are so many issues to cover and so much wrong with the current system.

I hope these matters will be addressed as a matter of urgency in Parliament and I would like to know what Mr Hunt is going to do as not once has he replied to my emails.  He should be looking at the waste of money to the public as it is costing a fortune to send patients to the private sector for years and years on end because local care has failed.  

All these important issues are being forgotten about in favour of anti-stigma campaigns and it is far more important to provide decent care and proper assessments and sort out the law because when it comes to long drawn out cases this is costing the public money.

I was able to provide evidence and proof of what I was talking about.

I hope I will be asked to go back for a further meeting in order that I can be informed as to what exactly they are going to do about the situation so that I can pass this on to all the other mothers and former patients.  This is an extremely urgent issue and should be dealt with as top priority –  I shall write for an update on this if I hear nothing but I am grateful that someone has cared enough to even meet me.  

 

“after speaking to my sister on two accounts I was shocked and horrified as to what she told me.

On the first occasion she told me “The doctor told me to request that my mother can only phone me on a Monday at 6pm.” My mother cannot phone at this time and does not phone my sister excessively. In my opinion the doctor is trying to put words in m y sister’s head and considering she is not in the right frame of mind due to being drugged up on so much medication the doctor is manipulating my sister.”

On the second phone call with my sister she had told me “They are trying to get me to speak to m y dad and not my mother” I think they are trying to replace my mother as the nearest kind and getting my dad to take over which is not fair or right.”

When a team gang up against you there is no protection – there is no decent complaints procedure as any complaints amount to nothing. It is a waste of time. The CQC do not get involved in any individual complaints at all. The MH law is outdated back to 2007 and fails to protect the most weak and vulnerable people in society.

Mental health is not something that people are interested in unless it affects themselves and I realise the fact is that no one cares. A mother pointed out to me that many people are abandoned once in a mental health institution but I as a mother do not wish to abandon my daughter – I am horrified at how unfair and cruel the system is that allows this to go on.

I have been accused of missing a tablet of Metformine on a visit home from my daughter. I do not recall missing a tablet and when I told the leading expert today about this he said that it would not have mattered in any case and when a nurse at the hospital said that if you miss a tablet of Clozapine you have to start from scratch – I put this to the leading expert and he said “that’s not true”. I think they are desperately trying to find excuses of saying that I am irresponsible and not capable of giving the drugs so that Elizabeth cannot visit any more.

Last year the consultant psychiatrist refused for Elizabeth to come home at Xmas and she had to spend Xmas in hospital. Elizabeth now wants to move on with her life and is of no risk to society however there is nothing to stop a team from saying otherwise as they are raking in thousands and thousands of taxpayers money under the private sector care. My solicitors had to do them a letter to warn them of abuse of human rights when the discouraged contact with myself. All the time unknown to them Elizabeth was texting me on her own accord. For a while the phone was charging forever in the office and none of the family could get through.

Who cares about mental health – I have to admit most people support things like childrens charities and cancer charities but not everyone under the mental health took drugs in the first place in fact the majority have suffered abuse and that is why it is wrong to drug these people as that is simply not the answer. I thought Elizabeth would get counselling but the counselling consisted on delving into her private life and questioning her about whether I had abused her as a mother.

Elizabeth has come out with worrying things and certainly when a person is surrounded by staff in a prison like environment they can be pressurised into going along with the team.

It is wrong for instance when a team put pressure on and change a legal representative but I have seen this several time before.

It is wrong when advocates do not attend large meetings which are bound to be stressful.

I have friends that their sons cannot face going through a court process because they are too stressed out. Then these people remain stuck in hospital for years not because they are a danger to society but because they become so weakened and some of course have no family members to defend them like I am doing for Elizabeth.

I know that the team would never agree to Elizabeth coming home to live with me but if she did then I would employ a nurse to live in – surely that would satisfy the team who only care about drugging of my daughter. If a nurse was to give the drugs then surely that would be good enough. Well the other thing I would do for Elizabeth is to employ a nutritionist. I believe the supplements have suddenly turned up but no one said anything. These will be needed when Dr Walsh comes over and I must make sure I get these back. I would look at a healthy diet and get the advice from top professionals. The trouble is that on a day to day basis Elizabeth would need activities to occupy herself with and this is where the care in the community let her down so badly.

Today I spoke to a leading expert who knows the drugs inside out and is extremely knowledgeable about the law and the whole system.

I had to admit I did not like to hear the truth – the truth is that no one cares – this has been going on for 50 years – the law is outdated and even when it was changed it was changed for the worse. Until the law is changed there is no hope.

I see my post “Message for the Team” has gained viewings and I just want them to know how heartbroken I am as a mother by the way I have been treated in light of the most terrible care, too shocking to put on this site and I wish them to know that the whole family would like to see Elizabeth out in the community. We have offered to have her home but we know that you as a team will not consider this and it would appear that all you want to do is to destroy my family.

I hope by this blog that the world can see how badly an outdated system needs to be changed and I don’t know why I have been invited to Westminster as I am just a mother who feels like nothing but I cling to hope in that someone will voice my concerns about the LAW and how badly that needs to be changed and how the current system is failing.

Elizabeth asked about her cat today – she misses her cat and she misses home and it awaits to be seen if we will be allowed to see her over the Xmas period. The team tried to make out Elizabeth comes back anxious and unsettled. Perhaps she is unsettled because the home is peaceful unlike a ward with alarm bells ringing all the time. The family are concerned that Elizabeth will end up going really downhill if left longer in this hospital.

I hear as well there is extensive bullying going on in the world of psychiatry more so than anywhere else. I have experienced bullying myself by the teams and a complaint gets you nowhere.

I have been to Westminster many times.  I used to work there and on Monday I am going there again. 

I decided to go home via the area where I used to work tonight in Westminster.   It looks lovely at night and this area brings back many memories.  

I remember taking Elizabeth and her sister to this area as a child. 

I remember the Royal Wedding and how much Elizabeth wanted to go but I was worried about her being amongst the large crowds.  We watched the Royal Wedding together on TV and then I took Elizabeth with me when things had quietened down.  Unfortunately Elizabeth was not very well at all and I had to get help at a station as Elizabeth is afraid of escalators and anything up high.   Now she has further deteriorated as even a small set of stairs causes Elizabeth to have a panic attack.  This is why I do not think she would be happy in an area like London any more – at least not in the immediate future.

On another occasion I called in to the Houses of Parliament with Elizabeth in the hope of seeing someone to discuss what could be done to improve the shocking care.  I was even more shocked that no one wanted to speak to me and as my local MP could not help me I wanted to see someone higher up.  I was so appalled that no one cared less and I decided I was going nowhere until someone did see me.  To my delight I was seen by Shadow Health Minister’s assistant.  If your local MP cannot help you then I believe you should be able to call in and see someone else.    What I really wanted was for things to be discussed and these discussions put into effect so that improvements could be made to the shocking care system.  

I have a meeting on Monday – a very important meeting in Westminster and I am so happy that someone cares –  I wished I could bring some of the other mothers along although there would be too many to accommodate in just one single meeting.

I phoned Elizabeth the other day –  I could barely hear her speak.  Alarms were going off in the background and Elizabeth said “this happens all the time here”.   This strengthen’s my opinion that this is highly unsuitable and that a more suitable place would be a lovely farm where there are animals and peace and quiet.    A therapeutic community would have things going on every day for instance.  At home I would have to employ someone to help me if I was to continue working.  At home there would be nothing to do from day to day for Elizabeth.  She is not well enough to get a job –  some people wrongly think it is laziness but no one can possibly know what it feels like to be on a huge dosage of mind altering chemicals.  I believe it is not the taxpayer who should be billed as regards benefits I believe that the pharmaceutical industry should have a responsibility when the drugs cause adverse side effects and disability.  They are the ones who should pay for the welfare of the likes of my daughter and others affects – not the taxpayer.  There should be a system in place to ensure that the pharmaceutical industry have a duty of responsibility if their drugs cause injury or disablement but it is impossible to find solicitors to represent you in such cases.

I can only hope that soon Elizabeth will move forward with her life in a positive way.  “I’m going to follow in your footsteps, Mum” – these are the latest comments said by my daughter –  well I would say to these comments that I would hope she will excel with success one day and progress just like someone else in my family who was wrongly labelled.

Is this why they don’t want me to see any more files –  perhaps they have found a label or labels for me –  there are so many to choose from in the DSM.

I will take along my leaflets and the book by Dr Walsh when I go to this important meeting.

 

 

Once under their, contact with families can be discouraged – certainly this has been the case. I did not have a blog in the first instance-  I was not being outspoken to any real extent like now and that is out of overwhelming despair.

Tonight I have been shopping in the wonderful Westfield Centre – not the one in Stratford but the one in Shepherds Bush with a beautiful ice rink.  This reminded me of Elizabeth when I took both girls ice skating at the O2 Centre in London and on another occasion when I tool Elizabeth to a local ice rink but she needed help in going around and I asked a member of staff to take her.  She looked so happy but prior to this Elizabeth was not at all well and it was a weekend –  I would always spend time with Elizabeth at the weekends and would have to consider where I took her.  She did not like crowds so it had to be somewhere peaceful but on the other hand she liked ice skating and looked very happy.  At one time she would have liked the shopping centre and beautiful light display.

Xmas is not far off now and last time we were deprived having Elizabeth at Xmas –  she was escorted by 2 nurses who left her alone with the rest of the family but did not leave her side when she came to me.  I knew what to expect and knew I was not being treated the same way as the rest of the family so was not surprised by this at all but if it was true Elizabeth was not well enough to spend time with her family at Xmas I thought it was bad that she was travelling for so many hours in a car only to spend a short time with the family before being driven back flanked by two nurses.  I did a party for her inviting close friends who had known her as a little girl –  you can imagine what they all thought. 

Elizabeth not only would like to come home but would like to be with her family at Xmas.  It is sad what is happening right now and how this is allowed to go on.  This is private sector care for you.

 

 

  

I am more than pleased you are following me.  I am pleased you are reading my blog and are taking such an interest.  I wish to share with you my weekend in that case.

I very much look forward to the weekends even though I spend most of my time catching up on housework and usual chores but this weekend I had something different to look forward to.

 

Sandra Breakspeare was down from Cornwall and I thoroughly admire a lady who fights for her son and never ever gives up.  So many mothers give up. I am like Sandra very much I see hope – I see hope of change especially that Mr Lamb is taking notice.  Mr lamb is interested so it would seem via Twitter about physical health which is something that tends to be overlooked.  

 

I have found out today my daughter’s drugs – Clozapine has been raised by 50mg.    She is now on 850mg.  Here is what the rest of the family have to say.

None of us are happy.  None of us feel my daughter is safe within your “care”.

To the doctor concerned – you have only spoken to me on one occasion and formed an opinion based on another hospital’s views written in the files.  You have never ever met with me face to face.  You have taken a dislike towards me because I do not agree with you.  That does not mean to say I do not respect all psychiatrists.  I am in touch with many who have been in the profession for years on end some of whom you have never heard of.

Here’s what I think –  you are not thinking about my daughter’s physical health – you are only concerned with drugging and I am proven right by the fact you have raised the drug Clozapine by 50mg.

Why?  You do not consult with the family or have once ever tried to communicate with me personally.  Well here is your chance to communicate personally let us be open and honest.  I can take criticism so lets hear from you.

 

Sir James Munby QC wants everything to be open and honest and I very much admire him for this.  I too feel the same.

The family feel that my daughter is not being treated fairly.  Much money is being made at taxpayer’s expense.  How much is being made exactly?

I feel comfort that I am not alone – it is not just me suffering and as a leading expert and lawyer I am in touch with points out with words to this effect –  mental health law can easily be usurped.   Yes!  it is easy to play on capacity and confidentiality.  It is easy to overlook someone vulnerable.  It is easy to criticise the mother and family and easy to dismiss what has happened to my daughter and the lack of care and what about the knowledge of the drugs and the working of the drugs themselves.   Well I am just a mother and cannot answer the questions on what effects a drugs has. Without a doctor being present how can I explain however I do have someone who cares very much and is extremely knowledgeable and it is not just my daughter I am being outspoken for either.   I feel sorry for those who have no one.

 

I want every single mother and father who has distanced themselves from their sons/daughters to take another look. 

 

When I went onto the ward locally some patients spoke to me openly about their problems  and some had been abused.  The answer is always drugs.  That is wrong – they don’t work.  Even some very honest psychiatrists notice this.  They do not work for everyone.  Unless you address the underlying problem with intensive trauma therapy then that person should not be straight away put on drugs you cannot easily come off. 

 

I wish to add that if someone suffers from diabetes they are IMMEDIATELY taken off the drugs.   I now wish to question why it takes so long is someone is having say heart problems or other serious side effects.  Why are professionals dismissing the physical health of patients and taking the easy route of drugging and persuading patients and families this is the right way. 

I have already posted an interesting  piece by a leading expert who I will not name on my blog out of respect but by the way he does not care in being identified so I am delighted by this advice as I am nothing on my own – I am just a mother.   I am treated less than this by the entire team would wish I disappear from the face of the earth.  Speaking of which I had in addition to the mother/fathers’s meeting nice day out with Elizabeth.  Elizabeth is losing confidence on the ward rapidly.  The whole family feel she is deteriorating.  The whole family are unhappy yet I know as a mother if Elizabeth was in the right company she could excel.   I wish to buy Elizabeth her own home.  I wish to buy her a business – she was talented at floristry.  She wants to work.  She is not lazy but if the consultant psychiatrist is allowed to carry on increasing, increasing and adding to the drugs given as and when required for instance in terms of Lorapepam which is highly addictively  then I am afraid I could lose my daughter.  I now want a full investigation.  Things are dragging on and I am so pleased I have interest at high level in Westminster.   I praise God for this.  The rest of the family feel their comments at a meeting today were ignored and dismissed and the whole matter is soul destroying to the family.  I thought a team should work with the family but this has not once been the case as far as I am concerned.

 

Why should they care.  At the Bethlem it was all about Clozapine – “you should have done your research”.  Under private sector care it is all about money and how much do they get per week out of taxpayer’s pockets.   

 

Whilst the NHS care failed there were good things about the NHS I liked.  The A&E that helped my father who had Alzheimers.  The nurses on the ward where he had a heart attack and this no doubt was due to him being on anti-psychotics.  There were good things about the NHS but the mental health was no good.  The wards were a cubicle and noisy.  I cried when Elizabeth was in that place. 

 

Now Elizabeth is 26 –  I want her home – she is stable and if I had her home I could not work any more.  I would have no money to pay the bills. 

Elizabeth who was once working, once learning to drive, once studying is a shadow of her former self. 

She clung to us when we took her out because she feels dizzy a lot of the time and just like when she was on Aripraprazole (Abilify) she felt ill after eating.  I thought she was gong to be ill at the table whilst we were eating and whilst she was at the cinema.  She has to have a sleep in the afternoons.  She is more stressed out and more prone to anxiety and panic attacks than ever ever before.  If Elizabeth remains much longer under this hospital I am not sure she will survive.  

 

What I don’t like is the way they dismiss you like you are nothing.  This is not what I ever envisaged.

 

A while back there was a problem.  I thought there was Norrovirus on  the ward  –  I only got to find out by chance.  Just like everything –  I remember several incidents – serious that have involve police and I got to find out about them.  Not once have I ever received an apology.

So, on this case I got to find out – it was either Norovirus of food poisoning.  Perhaps someone in the team can enlighten me.  I have an interest here –  I have a daughter on your ward – how would you feel as a mother –  well how would feel?

I want my daughter to be in a natural environment like a farm.  Elizabeth has been delighted with the chickens on the ward.  Elizabeth likes cats and animals.  Elizabeth is artistic and was good at floristy and came out like a different person when she took part in classes that the consultant psychiatrist di not agree with. Even he then had to admit Elizabeth did well and staff wanted to buy her items.

 

WHY HAVE YOU LET MY DAUGHTER GO DOWNHILL –  WHY DO YOU HATE ME SO MUCH YOU HAVE GANGED UP.  YOU HAVE NO IDEA HOW MUCH DAMAGE YOU ARE CAUSING TO MY FAMILY. 

Anyway I have to get up early tomorrow and have had a long drive back from Wales.    

I don’t know where to start with the thanks from complete strangers who have suffered themselves mainly the patients who I meet with regularly –  the mothers who are likewise suffering.  I thank you all and to those I have not met.

I hope Elizabeth will be a Survivor one day –  please God please let that be the case as not one professional cares about my daughter’s physical health at all.

   

 

 

 

  

 

 

 

 

Elizabeth’s sister has just got back from visiting and they had a nice time together in the beautiful peaceful setting of a farm.  This is the kind of place Elizabeth needs to be whereas I live in London and whilst I would have Elizabeth home she now seems to suffer more panic attacks than I have ever noticed before.  Elizabeth’s sister took her out shopping and for meals but it was a flying visit.

I have been busy at the last minute clearing my house for builders –  I am in such a mess now with boxes everywhere and I have managed to sort this out.  Tomorrow I am very excited at meeting up with mothers who are in the same position as myself and some have had to  make a long journey to London whereas the venue for this meeting is easy for me to get to.  I offered to have mothers to stay overnight even though I am in a mess with the decorating as this is just an informal meeting but I hope this will lead to a Facebook Page with links to Twitter so that all the mothers can write and talk about what is really needed in terms of care.    Mothers like myself who have sons/daughters sectioned for years on end who are written off like rubbish and drugged.  What kind of law allows this.  This is why we need a specialist centre to carry out proper assessments and offer humane care.  I am disgusted that in a so called civilised country this sort of thing is allowed to go on.  I have  not got a good word to say about the law that allows for this abuse.  I hope to address all these issues soon in a very important meeting on my next day off.

One of the mothers owns a restaurant and that is where we are meeting to discuss a unique care that is not on offer in the UK – however having said that I did look at one centre that looked extremely nice but was about £1000 a day!  The location of Central London would not suit Elizabeth and therefore I am happy for my daughter to make a fresh life in a more peaceful area just so long as the care is right.  The care is wrong right now as it is a hospital acute ward under private sector care yet the law in Wales I thought allowed for holistic care. If contra indicated drugs are continually pushed at my daughter at 800mg a day this is not a good situation but there is nothing I can do right now however that does not stop me from questioning things.

When I could see that NONE of the fourteen mind altering LSD like chemicals did not work and when I spotted in the files about 5 different diagnoses, the two main ones being Schizophrenia and Aspergers I started to question everything.    I started to buy books and these books have been very informative.   Out of a bad situation comes a positive situation – I would never have met so many wonderful people – strangers who have stepped in to help me like SOAP for instance and mothers who have written to me via my website and some have passed on invaluable advice. 

Some professionals have even stepped in to give me advice –  these professionals are lawyers, doctors,  scientists. 

The public are being misinformed about many things and it is only when you are in a situation like mine that you really look into matters but whilst many people may not wish to even think about mental health as it does not affect them they should be concerned about the public money being wasted and A&Es being closed down and I believe huge savings could be made if the mental health system was properly looked at.

There would be n o need to force drug someone or keep someone locked away forever if scientists were involved in relation to the drugs.  For instance a scientist would have experience and understanding in adverse reactions in psycho-pharmaceutical medications as well as interactions with drugs in general medicine.  Well not one psychiatrist has been concerned about this and I as a mother could see that the behaviour of my daughter was nothing to do with her diagnosis.  The behaviour was caused by the drugs – she really suffered on these drugs especially on 750 – 800mg of Quetiapine.  That is a large dose and in the end I saw the effects this drug was having on my daughter.  Not many people are questioning what knowledge do psychiatrists  have of the workings of these drugs.  Some may have knowledge but many do  not and even I as a mother could see that.

I am in touch with more than one leading expert right now who tell me faulty drug withdrawals carried out by psychiatrists who know absolutely nothing about pharmacokinetics or dynamics.  Not only this – Doctors who prescribe without testing for tolerance, contraindications, concomitant prescribing or drug metabolites.  Apparently I am astounded that there are many like this around.  What is the Government doing about this situation.  It is all well and good to impose CTOs and never ending sections costing as much as several thousand pounds to the taxpayer a week when NHS care fails and private hospital care takes over.  However it is no wonder the care is failing when so many professionals do not know the workings of the drugs.  It is like myself as a mother prescribing drugs.  Social services even tried to step in desperately to push Clozapine at my daughter.  What on earth do they know about the workings of the drugs and now I am hearing that psychiatrists do not know and as Doctor Tracy said some are on the drugs themselves –  well I would not be surprised to hear this at all judging by some of the behaviour I have seen.

 

If for instance someone is being reduced off the drugs the professional should know about the half lives of them and suggested rate of reduction and effects on any other medication.  This is very worrying.  What regulations are in place to ensure that patients are being looked after properly by psychiatrists if they do not know thoroughly about how the drugs work.   If a reduction is not done properly then this can lead to relapse and severe reactions and from what I have heard from other people this is commonplace.  I as a mother would insist on having a bio medical scientist involved who can demonstrate extensive knowledge of the drugs. 

I noticed at the Bethlem they present a sheet of paper telling a little about the drugs being prescribed however I have much more knowledge to share with them and the psychiatrist was extremely dismissive.  He even said that he had enough reading to do. 

It is no wonder there is so m any problems as patients are not being treated properly and the law should regulate who prescribes the drugs and the way the drugs are prescribed and proper extensive tests should be carried out for tolerance and contraindications, concomitant prescribing /drug metabolites. 

It is not good enough what is going on in the UK and I want something done about it.

I have been recommended to buy the book by Grace Jackson.

I think it is wrong that anyone should dismiss evidence in terms of adverse reactions and if an expert does a report that may make recommendations in terms of treatment and care in no way should this be dismissed under the law.

I will be going to see Elizabeth soon.  When we took her out last time she could not get out of the car and then it took two of us to support Elizabeth walking down the road as she felt dizzy.  Elizabeth is in bed by 8pm –  she is only 26 and should be out enjoying her life.  How can Elizabeth get a job – what is going to happen when she is released from hospital and is unfit and unwell to go down and fill out forms and advise the job centres.  However if there was decent care like Chy Sawel set up there is hope for my daughter and hope for some of the former patients who are doing well for themselves.  These people I would so like to be able to help my daughter not just professionals but inclusion of some of the former patients themselves and open dialogue. 

I hope Elizabeth  gets out of hospital soon and that there will be a team involved who communicate and do not not try and sever contact with her family just because they do not like me as a mother.  None of this would be happening if it was not for the law that needs complete change in my opinion.

 

I do not phone Elizabeth every day.  I do not advise Elizabeth to stop taking the drugs yet that is what I have been accused of doing but what if everything is wrong and professionals just wish to plod on giving the same treatment all the time.     It is especially sad if you have written proof by an expert of what is wrong and this is ignored.

I will write about the mothers meeting tomorrow- it is shocking that so many are affected and this makes me all the more determined to see Chy Sawel set up. 

 

 

 

 

 

 

I have had a nice weekend up until now.  

Met up with the former patients group yesterday and for the most part today have been busy sorting things out at home

We will be visiting Elizabeth next week – her sister hoping to go down during the week separately. 

I have not spoken much to Elizabeth this week and have received text messages with just one word “Hi” – today a member of staff said she was adamant she did not want to speak to me but I have  had two text messages today with the word “Hi”  – I don’t know what to think as not so long ago my daughter was being deterred from contact with me especially.  My solicitors had to do a letter reminding them of my daughter’s human rights.  It is wrong a hospital takes a phone away from a patient –  it is wrong a hospital deprives a patient from contacting their family but this is what has been going on in my case and has affected others in the family.  I am not sure now what to think about tonight when I have had two text messages and a message from a member of staff she did not want to speak to me.     This comes at a time when decisions will be made about the future of Elizabeth.

I sent her a text to say that I would be done next week and so would her sister separately.  I also wanted her to know that I had a surprise contact with what was once her best friend.  I needed to know if she still wanted to come and stay in the lovely farmhouse that we have booked and that her sister would wish to book there as well.   

All I can hope for is that everything is OK and that maybe Elizabeth will be allowed to come and stay with the family at Xmas unlike last year when she was not allowed to see the family over Xmas at all. 

  

 

 

 

 

 

 

 

I have sent a text message to Elizabeth as I could not speak to her tonight. 

  

 

 

 

 

First of all I will start with extracts from the Minutes.  I decided to do the minutes in protest at the fact I was never given a copy.  I am shocked by this as everyone should receive a copy of the minutes but the consultant psychiatrist at the Bethlem said no and when I asked why he said he wanted to concentrate on the “care”. 

I always took someone along to these huge meetings as a witness and they were shocked.

I am documenting the second minutes I did where I did an introductory paragraph relating to the last meeting where I had a disagreement with the consultant psychiatrist as to how the reduction would be done in terms of what had been promised in writing for my daughter – a drug free period of assessment.  That was why my daughter was at this so called leading  hospital.

So the psychiatrist had announced at the last meeting he would reduce the Seroquel by a huge amount and that my daughter was being given Olanzapine on top.  I was distressed to hear this as this was not what was promised.

Elizabeth had been sectioned for wishing to go out in the grounds and the fact she did not feel like speaking to two nurses who tried to stop her from going out.   I was upset at this second meeting because the previous weekend I was told Elizabeth had to be back in 3 hours and that police would be called if I did not do what they said.  Prior to all this we had all day to spend together but they had imposed rigid restrictions on Elizabeth whilst they tampered with her drugs.  Elizabeth described this place as prison – she wanted to come home and was very unhappy about what they were doing with the drugs.  I felt my daughter had been betrayed.  The rest of the family thought I had been tricked.

 

Anyway the meeting consisted of less people than the last one.  I have documented how I confronted the psychiatrist about the mixing of drugs leading to her being sectioned.  I requested she be taken off the Olanzapine as I had read this to be harmful – I had brought documents to prove this but he was not interested.    I discovered my daughter had been put on a Section 2 which is for 28 days.   The mixing of drugs caused shocking distress to my daughter.   When I confronted the team about this drug and a study done by Professor Healy, I could see that both the psychiatrist and psychologist were smugly smiling.  When I commented the psychologist stopped smiling but the psychiatrist continued.  He was dismissive and asked what alternative did I have in  mind.

The alternative would be obviously the drug free period that was recommended by the professor in the first place.  The psychiatrist still kept on smiling.   When I stood up in distress as this doctor refused to listen to anything, he immediately called a halt to the meeting.  “Get out of this room or I will call security and have you removed”

I commented that what I had seen going on was against God  – he still kept smiling when I accused him of abuse by not listening to my daughter’s wishes.  She had after all signed an Advanced Declaration before going in to that hospital I thought was a top leading renowned hospital where my daughter was going to get decent help.

The lead nurse ushered me downstairs and then a social worker came to see me.  He was attached to the hospital and I have to say this was one of the few staff I came across that I would highly commend. 

I felt nothing had been achieved and wanted my daughter out of that place into somewhere nicer as she was not happy.  Everything was up in the air.  What had happened to the contacts that the leading professor said he had?  Suddenly he distanced himself and was no longer a part of that unit.

My friend and I took Elizabeth for a meal but she ate nothing.  Whilst the grounds are beautiful surrounding this hospital, it is when you get onto the wards that you see the true reality.

About my letter of Complaint

On weekly basis where possible I got calls from the Lead Nurse but you never got given any information – just a chat about nothing really.   I referred to a conversation such as this in my letter and asked as to whether anything had been sorted out regarding me being allowed to take Elizabeth out at the weekends.   I voiced concerns that no one trusted me in the team and Elizabeth was forever stuck in on that ward because of staff shortages in terms of availability for escorts.  Elizabeth looked very pale as though she was not getting enough fresh air.  She had piled on weight whilst on the Olanzapine.   I was now having to be escorted everywhere during visits- suddenly the nice days out alone just the two of us had disappeared.    To allay the fears of staff about my daughter’s safety I offered to get character references and up until recently had been training for the Police.  I asked for clarification, questioned what their problem was and as I received no proper answers, I felt all of this was personal against me and that is because I spoke up for my daughter –  even if you speak up nicely this does not go down well with the team and they start to label you are well stating that I was causing distress to other patients and to staff on the ward.  For instance when Elizabeth told me she was upset at being offered Clozapine twice in the first week I confronted staff in the office but not in such a way where I was yelling and shouting however Elizabeth was distressed at just the mention of staff trying to push her on Clozapine.  She started to speak out I don’t want this.  I then stuck up for my daughter and defended her as any mother would do.    Elizabeth was on a Section 3.  Attempts had been made to displace me as Nearest Relative and I have never suffered so much harassment in my life.   I thought Elizabeth could have remained voluntarily whilst a placement was being looked at for her but at the same time I felt that she had been let down badly.  I was considering having her home as she was stable however my attempts at overturning the section did not work out and her solicitor noticed she was distressed at going through the Tribunal which I got to find out about by chance.  “Do you really want to go through with this –  you do not have to if you don’t want to”  –  I had taken a day off work and my daughter who found meetings stressful  had backed down.  The staff surrounded her in the hallway away from where I was sitting in the lounge area of the hospital.  Never on any occasions did I ever see the advocates Rethink present at meetings which I knew my daughter dreaded.  I did not feel my daughter was being represented fairly at all.    I had also questioned why Elizabeth’s face was covered in bruises.   A section 3 locally is so different to that once you move away from the local area.  Locally, patients are allowed unescorted leave but Elizabeth was not allowed out even in the presence of her family.   I begged for a placement for Elizabeth in that letter away from the hospital.  Elizabeth was complying with the drugs and was unhappy on the ward. 

I felt the staff were accusing me because of my outspoken comments against the drugs that I would encourage her to stop taking them or attempt to take her off myself.  However  whilst I am far from happy I would not attempt to do this myself.  My wish would be though that she is on the minimal drugs together with supplements because I think of the long term health of my daughter unlike these professionals.

 

In my letter as my visiting hours had been cut so drastically I had requested brining a personal trainer onto the ward.  The ward had the atmosphere of a morgue and it was depressing to even visit.  I liked to take my daughter off the ward so I could be alone with  her as staff were everywhere.

I heard one of the patients last night on the programme state that it was all about control and how right he is.

My daughter was moved away so quickly none of us in the family had the chance to say goodbye.  I believe the motive of this was to get her away from me and I discovered even more control and restriction under the private sector care given to the point of phone calls being monitored and supervised.

I thought C4s programme was very sad when so many staff approached a patient who was already distressed forcing that patient to take the drugs.  Even when my daughter was suffering Akathisia a  direct result of the drugs she could calm down in an instant if a friend from the ward or an animal was suddenly present. 

We got Fluffy the cat for Elizabeth as she used to visit at the weekends and I noticed how positive her reaction was but then Elizabeth has always like animals.  The only animals going on the ward at the Bethlem were sniffer dogs.  I found this amusing when it was the staff who were the drug pushers.  There were hardly any visitors for the patients and I tried to liven things up  with a personal trainer and classes on the ward after all what could I do in just 1 hour.  Nothing came of this because eventually I was banned altogether.

I did not get a satisfactory response to my letter either.

I have only spoken to Elizabeth twice in the week.  Her text is down to 1 word  “Hi”.  I might get a text like this during the day and cannot always ring her back straight away.  I then phone and we have a chat.  The first thing she mentions is her cat.   I told Elizabeth we would be down soon to see her very soon  but before this I am looking forward to meeting up with other mothers, some of whom I have never met before and one mother wants to come from Ireland where the care is equally shocking.  It is appalling that there only seems to be the right care in a small area of Finland called Tornio.  If only we had open dialogue here.

I have an important meeting coming up and I wish to discuss what should be set up in the UK and the alternative to acute wards.  I appreciate some people may be happy with the acute wards but even stepping on some of these wards made me feel bad.  I have been on them in the evening at times where the atmosphere can be volatile and noisy/disturbing. Such wards are not peaceful and some people prefer peace and quiet in order to get well. 

 

I would like Elizabeth to go to a farm in the countryside –  Elizabeth would not adapt so well to a city any more as she now suffers from panic attacks.

 

I hope a decision is made soon but I am also concerned about her long term health.  I cannot dismiss this at all as I see this as a risk factor which should be weighed up by the professionals and not ignored especially now I  have received top level advice – this is something they should all sit up and take notice of in my opinion.  

 

 

 

 

 

 

 

 

 

 

A date and venue has been agreed for an informal meeting of mothers, some of whom have sons/daughters on sections for years on end. What a waste of public money when many of these people if given the right care and support could thrive in society. It is so bad that people are written off and left to go downhill as the longer the stay in hospital the hard to rehabilitate that person. Today I have been busy writing to the mothers to see how many wish to attend this meeting. Of course the bulk will wish to attend as none of these mothers are not at all happy with the care and have had their families and life ruined. Some of the mothers have suffered physical health problems as a result of the stress of having their sons/daughters locked up on never-ending prison sentences often through no fault of their own as the drugs themselves can cause psychosis and when reductions are done completely wrong under hospitals it is no wonder why a patient can suffer psychosis and adverse behaviour. As Dr Ann Blake Tracy quite rightly says reductions should be done very slowly and carefully over a long period of time not in two weeks like the Bethlem did and then mix it with another drug. The reason so many are on sections is because there are no facilities suitable for them to go into and this is the kind of care that is needed. Why throw someone in a hospital for the rest of their lives and just give up. This is disgusting and an abuse of human rights in my opinion. There may be underlying health problems that could be affecting someone’s behaviour for instance but many of these people are not violent or a risk to society and it is unacceptable to me to see o many are just being written off.

I wish to introduce the mothers to one another and help in any way I can as I am keen to see Chy Sawel set up and am looking forward to when Dr Walsh comes over here. If any experts are sceptica, it is wrong as they should keep an open mind about matters – it is all very well and good to experiment to their hearts content with drug after dangerous drug but when these do not work what is the harm in trying a new approach. Obviously these professionals do not even stop to consider how they themselves would feel if they were forced to take drug after drug that cause terrible side effects and then be ignored and told you have to take them for the rest of your life. I do not accept this at all.

If a specialist centre was set up with doctors involved then there is a possibility that some of these people can be helped – these people who cannot speak for themselves as they are locked away. Dr Walsh will look at diet and vitamin/mineral deficiencies and in fact everything in depth unlike what is done in the hospitals. In the right environment reductions can be done in a humane way and this will save money in the long term to the NHS as obviously if people are affected with their long term health this will put a burden on the NHS. If someone has diabetes, they are immediately taken off the drugs but as I have documented, nothing is done properly in the UK as regards a reduction and no wonder things fail. Why wait until someone has developed a life threatening illness if it is proven that the drugs are doing harm.

So once I have found out the numbers I will contact Sandra to let her know and some of these mothers are in despair as they get no communication or help and have to witness their sons/daughters going downhill.

It is not just me who wants to see change even some of the medical profession and because of lack of facilities this is why patients are left far too long in a hospital.

It wont be long now before we go down to see Elizabeth. I phoned her yesterday and she sounded a bit down. I believe her sister will visit shortly alone and I have booked the wonderful farmhouse for when we come down to stay.

I am so happy that this meeting will take place on the 16th and I have offered to have stay with m e some of the mothers for 1 night.

%d bloggers like this: