I spoke to Elizabeth yesterday and she is better now.  Unfortunately, Elizabeth was not well during her stay but there is so much going around and the entire family have had the misfortune of suffering flu over the Xmas period but never mind.   I myself rarely go to the doctors but speaking of which I had cause to contact my GP surgery recently and it would appear they have washed their hands of my daughter Elizabeth.  No-one bothered to let any of us know of the retirement of the family doctor who has known the entire family for years on end.  This has led me to doubt the effectiveness of GPs taking over the care and especially the charging of patients as someone like my daughter for time wasting who could be deeply affected.  I rarely ever go to the GP surgery myself and I look back on years ago at a difficult time in my life when my mother died of cancer.  The first thing I got offered was the drug Valium.  Luckily I realised quickly how very addictive this drug is and I am anti drugs quite rightly so even since – it was no answer to my problems at the time when I was quite young.  The effects of stopping taking even a small portion of these chemicals was very notable.   I  now as a result avoid having any drugs apart from the odd Parcetamol  or say a cough sweet but only when really necessary. 

If only I had known Elizabeth was going to the GP surgery –  I would have said “STOP!”  –  before going there I would have warned Elizabeth about my experience. It was the GP Surgery that prescribed Cipralex that had the most devastating affects resulting in shocking skin problems caused by irritation and a complete change in personality.  I did not at first put this change down to the drug however having read up so much on anti-depressants,  I realise that it was the drug that had caused severe adverse reactions to my daughter back then.  Whilst I know that some people can get on with these drugs effectively there are no proper tests being carried out to see if someone can in fact metabolize the drugs and if not then these drugs can prove very harmful.  it was very noticeable to the entire family that there was something very wrong but at the time I as a mother had a lot of trust in doctors and their expertise.  I know now that there is quite a divide in opinion amongst the professionals themselves which has made me question everything and unfortunately, after experiencing severe side effects from Cipralex when Elizabeth took herself off the 30mg of Cipralex I as a mother now wish that I had done my research then on these drugs and I would have said to her that on no account should she take herself off in one go.  I wish I could turn back the clock but many people are not advised proplerly as to how safe these drugs are let alone about withdrawal from them. In fact as I have been told even some of the professionals themselves do not know the full workings of the drugs and how to properly reduce someone off them.     I remember Elizabeth suffering severe mood swings and headaches on Cipralex and this in turn this affected her behaviour and sadly led to hospitalization and that was the biggest shock of all where the care has been the prescription of more and more and more drugs pushed at my young daughter then just 19 years of age who eventually just gave up hope after having been given several diagnosis and then quite a serious label.  Before that she wanted to work and get on with life but there was no encouragement whilst in hospital and I even tried to help by getting her little jobs and this was not looked upon well by the professionals. 

So now the GP surgery do not want to know about my daughter because they have not seen her for some time.  I as a mother had not been advised by them of the retirement of the longstanding family doctor.   Whilst I understand about confidentiality I believe that there are occasions when you may need to consult with the family GP – for instance when someone staying with you is very ill and if in certain instances you are requested for such information but you are denied even the most basic information.

When I asked Elizabeth she said she did not know who her GP was. It was like at the Bethlem when Elizabeth did not know what the drug was beginning with the Letter M.   This led to me being banned when I got to find out she was on the diabetes drug Metformine – contra indicated when given alongside Clozapine which has recently been raised.    Elizabeth is not capable of dealing with information or organising things herself, picking up a phone to speak to the hospital’s recommended solicitor or advocates  It is not that she has no knowledge whatsoever, it is the fact she does not have the strength to deal with things as the drugs have weakened her.    When someone is under a section and strict, strict control of a team everything is closely monitored and things are organised for that person if that person no longer has the strength of character to pick up a phone and do things for themselves unless that person is capable of asking things are not done fairly.  That person may also feel under pressure from having to go along with advice from the team so this is the full picture and I know of people who no longer have the strength to stand before a Tribunal and remain in hospital for years at huge cost to the public simply because they feel they cannot go through with the stress of a tribunal.

This kind of thing throws into question how can someone like Elizabeth survive without adequate and fair backing in the community?  How can someone like Elizabeth report to say the Job Centre and fill out necessary forms.   What when benefits are stopped for someone like Elizabeth who now suffers from severe panic attacks and anxiety?   For instance when Elizabeth was in the community I often found letters on the floor and cheques unpaid.  I once found bank cards in the bin.  Elizabeth needs a lot of help to get by in the community and someone like Elizabeth who cannot get to vital appointments on time, cannot work due to being on a high level of mind altering drugs but that does not mean that Elizabeth is lazy and should be written off.  I as a mother am confident that with the right help in the community Elizabeth could do something however I have had to contact a privately funded charitable organisation to see if they can offer any kind of advice as if they have managed to get some people who are classed as being untreatable the right kind of help I never stop having hope that somewhere in the UK there is the right kind of assistance.  (I am not talking about the stopping of drugs by the way!).   What about the proposal of GPs that someone should pay £10 for “time wasting” –  here is what I think of this proposal: –  I quite rightly think that this is very bad.  Whilst initially I was all for GPs thinking that my longstanding family doctor had the whole picture – the whole family background unlike psychiatrists who appeared dismissive well now I have a different opinion.

Whilst I am not against all MH professionals,  I truly think that by spending so many millions on  having MH professionals at the police station is not the answer and would be better spent on providing a choice of  facilities and care in the community to avoid the hospitalisation revolving door scenario of some patients that are considered “treatment resistant” and who do not improve. The Government should listen to the former patients and families –  if a system is failing then someone like my guest blogger could come up with some good proposals. I think as a mother that if patients themselves could be involved in helping someone like my daughter (some truly wish to be involved like my guest blogger) then they could be the very people who could better help someone in a state of crisis, who have been through crisis experiences themselves.  This may be more reassuring to the patient in crisis in some cases like my daughter than to be faced with  police or professionals, not all of whom have understanding and maybe this could avoid the admission of some patients to  shocking acute wards or avoid arrest. Perhaps someone like my guest blogger could be employed in such a useful capacity under Open Dialogue scheme that is so successful in Tornio, Finland.   Whilst some professionals do not handle a situation well at all they can cause more damage through their to interventions and destruction of family relationships based on wrong assumptions, without  getting the full facts –  this is something else that could be tackled under  Open Dialogue involving groups of former patients themselves and more involvement of families where possible.   Being discarded like rubbish and controlled and kept down is not therapeutic in my opinion and that is what is going on under psychiatry.  It is not a professionals or the police who could help someone like my daughter – it is none other than a former patient who has the true wisdom and understanding.  It is having the right companions and not everyone is bad under the MH – far from it and many could have a very beneficial role in this respect.   If there were facilities like in the States such as Earth House and Cooper Riis this would be a good investment.  More research should be done into epigenetics re MH and PTSD instead as this could be the real answer to some patients getting better who are classed as “untreatable”.   I cannot accept “treatment resistant”! 

Extracts from the Introductory Paragraph of “New Psychiatry” written by my Guest Blogger.

I shall feature extracts from this brilliant piece of writing on a weekly basis.  It may be critical but there are some valid points that should be considered before any professional can just dismiss matters”. 

“Providers have a congenital inability to overcome any obstacle more challenging than getting a job with the Service Providers (which clearly can’t be that difficult judging by the incompetence-founded haplessness of most of the staff that I have had the misfortune to have had to engage with so far).

And, even the good staff I have encountered so far, seem to have no ideas whatsoever about how to influence the bad ones, other than by dropping hints and fruitlessly hoping that the bad staff will find ways of turning hints into miracles.  Some of the worst problems are “bad culture”, “bad leadership”, “bad internal communications”, “putting a gloss on everything for the purposes of cover up”, “an aversion to setting expectations (because then failure becomes possible)”, “an aversion to upsetting colleagues”, and “a cruel and callous disregard when it comes to the matter of upsetting large numbers of Service Users, even seriously”.

I have known my guest blogger for some time through the group of former patients I meet with from time to time called Speak Out Against Psychiatry.  I consider this person to be of no risk to the public but this is a case that is all down to enforced drugging and I believe this is wrong as there are other ways that this situation could be dealt with.    

Anyway I am very impressed with the writing skills of this individual who has vast experience as a service user within the mental health system and excellent writing skills.   I cannot help thinking – what a waste that someone like this is in hospital who could play a vital role, if included, in improving services for all service users and then there would be no complaints!  

I may have to do more than one blog to feature the many valid points he makes which I list as follows:

“in any organisation or institution where there is no clear understanding of the problems, few good ideas about what can be done to help, cash starvation, obsession with minimal cost REGARDLESS of consequences, endless expediency, fire-fighting and corner cutting, insane silo politics and complete lack of leadership, scrutiny and accountability.  Such organisations and institutions evolve like out-of control cancer driven by never-ending bad compromise of the kind that panders to the fears of control-freaks and the fears of the paranoid leading to the endless turning up of new weird and horrible problems, partial solutions turning up at random sometimes and good ideas always dying a death in infancy.”

“the system is totally insane”.

“bad science coupled with insane bigotry, arrogance and over-caution”

“psychiatry is an out-of control very badly designed bureaucratic machine”

Take SLaM for instance (I have shortened some of the comments):-

“Complacency of management and on-going denial of anything every being seriously wrong”  (these comments are made in conjunction with their  Management approach re improving patient experience).

“good thinking is seldom acted upon”  – these comments made in conjunction with Board discussions about key ingredients of an effective service – client-centred decision-making, collaborative (shared) decision-making, informed choice, informed consent, undesirability of over-medication, importance of focusing on well-being and recovery etc etc.  

“When projects fail:   “it seems no one ever bothers to identify obstacles to success with a view to overcoming them”.  “Virtual absence of follow-through”.

Future plans appear year on year to be all show, having “no positive impact on patient experience” yet the Management team like to show that staff are working hard with a view to realising meaningful significant improvements.

“Referring to millions secured for research for ever more powerful medications with hopefully fewer serious side effects, this begs the question  – is suppression of symptoms with mind-distorting chemicals ever changing for the better?  It should also be highlighted in our very carefully considered opinion that because the Management team seems never to take its critics seriously, project leads routinely fail to deliver anything noteworthy.” 

He goes on to appeal that “please do whatever you can to call Mental Health Service Managers and Clinicians to account whenever they fail to listen, whenever they fail to get serious about understanding the legitimacy of the concerns of their critics and whenever they fail to act decisively and with follow-through, in accordance with all recognised understandings”. 

My guest blogger commends his psychiatrist on the one hand with  having an excellent memory however he puts this down to the memorisation of textbooks verbatim, textbooks that are all about controlling people with no interest whatsoever in promoting their well-being.  Therefore no proper thinking is done in his opinion.  He has come up with a diagnosis for the psychiatrist “a text book robot who has been programmed through verbatim memorisation of all textbooks on the subjects of control freakery without heart and the power of the chemical cosh who uses what little remaining humanity to mock victims.

My guest blogger has re-written psychiatry in a lengthy document which I am currently reading through and considering featuring on my website.   

My guest blogger should be given a role himself to work with the Board to focuss on improving an outdated system that is failing so  many.  My guest blogger should have been featured on the recent television series.  This is someone I have seen liven up the ward and encourage/support other patients.  

Well I HEAR YOU and I hope so will others particularly the professionals themselves as something needs to be done about a situation where wards are overflowing and there is a lack of beds because of high demand.

Introduction:

I was sorry to hear my guest blogger is back in hospital again.  Here is an example of where care is failing when “treatment of enforced drugging” does not work.   I believe a much different approach needs to be taken especially for those who are “treatment resistant” to the drugs or may dislike taking them due to terrible side effects.    How can this be achieved unless there are specialist facilities provided here in the UK  and I do not mean a hospital – a prison like environment.  I mean somewhere far more therapeutic like Chy Sawel where patients would be treated humanely and proper assessments given.   If there are centres provided that involve professionals in quiet and peaceful locations in the right environment I do not see any problem. I just do not believe anyone should just be written off and that nothing is done about a situation where care simply does not work.   The drugs do not cure someone and can in fact make someone worse that is for sure and what if someone is misdiagnosed or are suffering from serious physical health problems – nothing should be ignored.   All the more reason to have some specialist facilities set up with the Country’s leading experts being involved who know everything about the drugs,nutrition, intolerance/food allergies etc as well as those involved in intensive trauma therapy/PTSD.  If someone is not getting any better they could have the wrong diagnosis and this needs to be clarified by leading experts in the field of say autism and PTSD and then instead of just writing someone off, a new plan of treatment is agreed upon.

I will soon be including some of the writing of my guest blogger who has written a whole piece on “New Psychiatry” and I believe he has made some very valid points which I will be featuring shortly.

 I will add to this blog as I am impressed with the brilliant writing skills of this individual and feel what a waste when someone like this could have so much to offer – there are many others like my guest blogger who are forced to take drugs – something could have  happened to that person – maybe they have been misdiagnosed or have not been properly assessed.

Xmas this year has been good.  My daughter Elizabeth has been allowed to come and stay and has just left to be with the rest of the family.  .

Elizabeth asked me to pass on her thanks for everyone’s kind support –  lots of people, complete strangers from all over the world have offered to help and have sent personal emails.  Elizabeth likes music and I showed her some of the musicians following her but   I do not show Elizabeth my outspoken comments on  my views regarding the drugs and her treatment.  Elizabeth wants everyone to know she had a great time at home this Xmas.

We had guests over in the evening that my younger daughter knew from Italy who were away from their families at Xmas.   I did some food as I had quite an abundance of food in for Xmas.  Unfortunately the next day Elizabeth was ill not surprisingly having probably eaten far too much.  I have noticed every time Elizabeth eats she feels ill and this reminds me of when she was on Aripraprazole. I thought she had developed Bulimia on this chemical.   The hospital had given her a gift voucher and I got her mainly clothes and money but Elizabeth will be too ill to trapse around the shops in London – she would not like this at all so I have warned the rest of the family not to take her shopping in the sales.

Elizabeth wishes to share some good news with everyone.  She wishes to tell you she is being discharged from hospital soon but she needs to look at some places first and has only been to see one (I cannot mention where) and she liked it.  Elizabeth asked to come home and live at home but this will never be allowed as the team do not trust me and think wrongly that I would take her off the drugs or persuade her to stop taking them.  The leading professor tells me it takes 4 years to come off these drugs in her case.  I am not a doctor and unfortunately do not have the knowledge to reduce someone off drugs for a start and even without the fantastic advice I have been given this kind of thing should be done in a proper environment but my criticism is where is there a proper environment if treatment goes wrong or if diagnosis is in doubt.  Elizabeth has still not been shown the report by an independent doctor by anyone.   I think this is bad.  She has also not been told by anyone in the team about possible discharge.  I have told my daughter this good news and it is good job I know about it as to keep important matters like this from a patient is not right and extremely unfair.    It is not honest to do this.  If any mistake has been made in diagnosis then it should be rectified and an apology given and fresh look at treatment but no one will ever own up to this.  Things can easily be covered up when matters are kept secret like an independent report from the patient and I have been extremely honest with my daughter and this is why I do not like the current system of care.  I do not agree with such secrecy.  This is why things need to be changed and patients who has been misinformed be properly advised and notified and the sooner things are changed then the better.  That way the correct treatment can be given rather than plod and take the easy route.  I am not the kind of person to take the easy route as nothing positive can ever be achieved and I do not mind the world knowing who I am either as I am not ashamed and do not believe in stigma.   Elizabeth said she often feels ill on this medication after eating and suffers headaches.  Unfortunately Elizabeth remembers past friends likes yesterday and I hope that once out of the restrictive environment of the hospital she will move on in her life and make the right kind of friends and be happy.  Only with the right friends will she be able to move on and forget her past and of course the recommended intensive trauma therapy.   By the way I do not agree with ECT as I am touch with patients who are most upset they have lost precious happy memories as a result and it is horrific if this kind of treatment is forced upon any patient.  This treatment should not be forced upon anyone and if this is done then it is abuse in my opinion.

It is recommended Elizabeth has intensive trauma therapy and this should have been given in the very first instance. Anyone who has suffered abuse should be offered this treatment in my opinion before being put on the mind altering chemicals that do not work for everyone and being given a label that may well be wrong.

Anyway it will be a quiet day today and I intend to visit the old lady I have known for a long time.  I have a lot of clearing up to do in the house. 

Tomorrow, Elizabeth will be taken back to Wales.   I have kept a couple of days back for when we may have to go down for any meetings.

In all it has been a very successful Xmas and I have felt so happy.  The best part was us all sitting round the table having dinner together on Xmas Day.

I am full of hope for the future and things are looking positive and my main wish would be to see positive change: openness and honesty surrounding mental health care and involvement of families by way of open dialogue as families are excluded in many cases and everything is so unfair –   a patient should be treated openly and honestly and this is not happening under the current system as I have documented.

There are many patients who are highly intelligent and could offer so much to others.  One such person I will be featuring in my guest blog which I will do at the weekend.  This person has written a fabulous piece called “New Psychiatry” and I think that this should go right to the top in  my opinion –  these valid points should be discussed at Government level.    It is far too long to feature in my guest blog so I have sent a draft of what I wish to publish for the approval of this person who is currently a patient in hospital and knows exactly what he is writing and has had extensive experience of the system .  All I am doing as a mother is listening and in fact I agree with much that he has written.  Many professionals could learn a lot by listening to this person who wishes to be heard by the world and wishes to talk openly and honestly about his observations and views and I admire such honestly and am proud to soon be featuring this excellent piece of writing.  This person should be given a positive role to represent the patients in much needed improvements in respect of mental health care in my opinion. 

I have left Xmas this year to the last minute as I have been busy with decorating and am just about getting up straight. Elizabeth is allowed to come home this year unlike last when she was escorted by 2 nurses and was only at home for a few hours before being taken back. Her sister is picking her up halfway where staff will be meeting with her as I am not able to do this so I am very grateful about this. Elizabeth has texted me to ask me to buy something in the way of food she likes. Today I have been shopping and tidying up the house as well. I am exhausted. I have no holiday over Xmas and so have been rushing to get things done at the last minute. During the week I went to a fabulous party with my colleagues in Chelsea. It was sheer luxury to stay for 1 night at the Novotel in Hammersmith. Well I would recommend this as whilst the room was not the best I have stayed in and did not compare to the fabulous accommodation in Madeira or the view come to that the breakfast was every bit as good and I do not have time to have a breakfast in the morning as I have to be up so early to travel in to Central London. Anyway Elizabeth will be staying Xmas Eve and Xmas Day with me and then going to stay with her Grandparents and rest of family and they will take her back. I have a couple of days carried over in holiday for January – there may be meetings coming up that I may have to attend so I would rather carry over these days as I may need time off. I am so looking forward to being like a family again just for 1 day. I am positive that the New Year will bring something good and I hope to catch up with Mr Burstow and Mr Lamb to discuss what they intend to do about things bearing in mind my extensive discussions. I hope to go to a conference in June and I have fabulous news – I am going to keep that a secret for now – I have more than one piece of news that has made me so very happy. Over Xmas I hope to visit the old lady who has become part of the family but unfortunately I am unable to do what I was once doing as I now work full time. We used to have her over every year to us at Xmas along with my father until both became too severely disabled. I think Xmas is a sad time for many and a time when the elderly and mentally ill should be thought of. I hope that by writing my blog it makes other mothers think – well here’s a mother who is not ashamed – here is a mother who is proud and not afraid to speak out – I have read many books and educated myself but to begin with I did not understand to be honest. However I have seen more than 1 case in my family and I would advise any mother not to turn their backs on their sons/daughters. I would advise any mother not to be ashamed of speaking about the subject of mental health care and I believe this is the way forward for change and I am positive that Mr Lamb has something planned for change otherwise I would not have been invited and I want to hear all about this from him and Mr Burstow. A specialist centre is needed to do proper assessments that are not currently being done – the way to get rid of stigma altogether is to get rid of the secrecy surrounding the courts and include the wider public – involve them in cases like my daughter, bring things out in the open to show the public that people under the mental health are not all killers and also honesty surrounding the drugs would be a good thing – some people may not be able to metabolize the drugs. Some drugs may work for some but may cause adverse reaction to others leading to psychosis. This is hidden from the public instead of researching how to help these people they are written off as treatment resistant. Well here is what I think of this diagnosis THIS IS A LOAD OF RUBBISH! Given proper decent humane care an intensive trauma therapy instead of drug after drug is the way forward but I have been advise by leading professors that it can take years and years to come off the drugs properly however what should be provided is the correct facilities – ANYONE can suffer psychosis on these drugs or coming off them if things are not done properly and I only want a Bio Medical Scientist involved in any changes or someone like the professors who speak the truth. I also want Dr Walsh involved to look at the correct treatment and assessment and to train up the 20 doctors so if there are any doctors interested please contact Sandra Breakspeare as another leading Professor wishes to be involved in the Chy Sawel Project and I am delighted. There is hope for Elizabeth now and on this happy note I am going to wish everyone a very Happy Xmas and New Year and I cannot wait until the New Year as I am excited to see all these new developments in place.

I briefly read the blog by Mental Health Cop. I enjoy reading this blog and am pleased that recognition is being given. On the one hand it is good that someone in the Police is taking such an interest however I do not happen to agree with everything on his blog.

For one I disagree about the week long training course. I thought the police training on MH was excellent in my opinion however the best training would be for him to come and meet the patients and listen to what they have to say and maybe the police can be involved in a better way rather than just arresting. I cannot blame the patients for reacting the way they do having seen what I have seen.

It is nothing to be proud about being invited to speak in front of all these professionals. He would have more to be proud about if he was to come and meet the patients themselves who have suffered cruelty on the wards.

Well I too have had an invitation this year to see Mr Burstow for which I was very grateful. I was pleased he was meeting with Mr Lamb directly afterwards.

As regards being invited to speak in front of professionals. I have invited myself to do this! Twice I got up to speak at the IOP and backed Frank Bruno as I admired this honesty. I also spoke at Carers UK Conference.

I also admire Eleanor Longden – this is the kind of person the professionals could really learn from especially the Police/social services and psychiatrists.

I would be more impressed if I was to read on Mental Health Cop that he was meeting with the patients or that the police were doing something positive for the patients – for instance there is nothing to do at the weekends on the shocking wards. Instead of just going around and arresting the patients the police should have a better role in my opinion. My younger daughter whilst at school and when diagnosed with Schizophrenia was taken out with the police for 1 week during school holidays during the time I had to work. She had a brilliant time. Something positive like this would be good for the police to be involved in.

I am not impressed with reading about “places of safety”. I am sorry but where are these places of safety? A cell is more quiet and I heard not only my daughter but other patients begging to go to prison.

So here is my wish list for Xmas and very different from that of mental health cop:

An end to the cruelty of enforced drugging and CTOs and proper look at assessments and checking to see if someone is metabolizing the drugs. If not then the drugs could be harmful to that person and it is not only a waste of money but could result in severe physical health problems if continued.

It is about time the outdated law is changed and consultation for this change should be done with patients and not just the professionals . It is the patients that are suffering the abuse. Mental Health Cop talks about assaults on staff – well I am not in favour of staff being assaulted but this post is one sided as I have heard about the abuse to patients and what is done about this. ABSOLUTELY NOTHING – if mind altering drugs are given and tampered with like they were at the Bethlem then this leads to psychosis and who h as caused the psychosis in the first place – this is none other than the professionals themselves. You cannot mix drugs or do a steep reduction without causing adverse behaviour and I feel like this was done deliberately. The care is abusive – the law encourages abuse and if there were proper facilities available then no patient would have to go on a CTO. Also if the drugs are found to be doing more harm than good a patient is just ignored – this is when there should be a proper facility for a patient to go in and be safely reduced. A reduction of these chemicals is surely no different than a reduction from illicit drugs yet no help is given to patients to come off the mind altering chemicals in a proper way if someone complains of serious side effects. A patient is wrongly told they have to take them for the rest of their lives and whilst I am not saying to anyone to go ahead and stop these drugs, I think there should be the facilities given and professionals involved in helping in some circumstances and if a patient wishes for this to be done. I am not saying that the drugs do not help everyone but there are circumstances where they are dong more harm than good. By the way reductions are not done properly in the UK and that is why there are failures – too steep a reduction can cause psychosis and there have been suicide cases. So proper regulation needs to be put in place where bio medical scientists are closely involved who really know the workings of the drugs and how best to do any reduction – if a patient suffers from diabetes I heard they get taken off the drugs but there are others who complain of serious side effects but are totally ignored. Nothing is being done properly in the UK. Patients are kept on the drugs simply to control them and if the patients are drugged up then the staff can have a quieter time. I would not advise anyone to stop taking their drugs and whilst I may be anti-drugs I believe that unless you have the support of a professional it is not a good thing to stop taking them but my criticism is there is no choice and I do not know how staff can surround a patient, pin them down and inject them with drugs yet MH cop goes on about assaults on staff and not on assaults regarding patients.

I would like more Government funding into MH care and improvements on wards. I would also like to see at the same time much more support/investment to those in the community.

I would like to see inclusion rather than exclusion and openness and honesty instead of secrecy and cover-ups/bullying and harassment.

I would like to be able to choose the psychiatrist as the nearest relative with the consultation of my daughter of course – I thought Nick Clegg was going to do something about this. What has been done? I shall be writing directly to Mr Clegg about this he said changes would be made in 2014 . I wish there was also choice of country in order to get decent care – I would of course choose Finland – Tornio – the only place in the world they have decent care and treatment by the very psychiatrists I would like for my daughter. No wonder they have 95% success rate.

I would like accountability and openness in the family courts which are currently secret. I totally disagree with this and would like this case to be open as much can be learned by what is going on. This is the only way to improve things and much money could be saved.

I would like to see Chy Sawel set up and have Dr Walsh come over here to assess my daughter so she can have the correct treatment. A place for my daughter to go unlike a shocking acute ward that is overflowing – a peaceful environment away from a noisy bustling city. An ideal location would be a farm with lots of animals – Elizabeth likes animals. There is nothing therapeutic in an acute ward that is for sure.

I would like open dialogue introduced so that parents and families are included unlike at present. Not all families are abusing their sons/daughters.

I would like to eventually see Elizabeth living a normal life and having a job even if it is just a few hours a day.

Most of all I would like to see Elizabeth happy as is my younger daughter who was diagnosed with Schizophrenia as a child but is now on top of the world.

If I was to win the lottery I would use everything to set up Chy Sawel and Root and Branch Project and I would wish for Dr Walsh to come over and train up the 20 doctors.

I would like to see more patients included and given the opportunity with the right level of support to be able to take on a small job. It is disgusting that there is such a waste of talent out there as many of the patients are highly intelligent or else have brilliant artistic skills and much to offer yet these people are kept down by so called professionals.

Well that is enough of my list. It is not long now until Xmas – I shall hopefully see Elizabeth over Xmas and I have some good news – however it is only fair Elizabeth tells you this herself if she feels up to writing.

I shall be enquiring how my guest blogger is doing with his piece. This guest blogger has excellent writing skills and I am sure the piece will be extremely interesting.

Just like mental health cop I shall be speaking in front of people but as a “surprise” guest. I have thoroughly enjoyed going to events at the IOP. I have something very interesting to discuss with them but I cannot disclose this as yet.

This weekend I shall be busy – going to meet friends tomorrow seeing a show and having a meal out. A party mid-week and I must find out when the Carers UK party is as I miss out on many nice things organised by the carers group because they are during the day. I shall only see Elizabeth on Xmas Day and she will be spending most time with the rest of the family .

Elizabeth made it quite clear today that she does not want to go to a step down house………………. if that is the plan to keep hold of her by this hospital.  Someone said they had their own step down houses well maybe this is why nothing is moving on. There are meant to be other referrals but there seems to be some big holdup right now and having spoken to my daughter I am wondering if this could be the reason.  If someone got on the phone and communicated with the family then there would be none of this speculation going on.  “I just want to get on with my life now”  –    Anyway I want the world to know my daughter’s wishes – she has recently been taken to somewhere and liked that place very much.  Elizabeth’s wishes should be listened to.

I got a call from the consultant psychiatrist recently – the first call I have ever had asking what my requirements would be for Xmas but there was no mention on how long Elizabeth would be allowed to spend with her family.  So far only 1 night has ever been allowed and I have had to share my time with Elizabeth and the rest of the family who are living in two different locations.  Elizabeth lives about  the farthest away as compared to anyone else so she tells me herself.   I am waiting to hear whether the rest of the family can pick her up – that is the problem – I do not have holiday left over the Xmas period apart from the statutory days.  Virtually all my holiday has been used going to Wales.    If I did not have a car I would not be able to see Elizabeth.  If I did not have a job I would have no money to visit.   Getting back to my car I am obviously concerned that the car is looked after well what with all the driving I am doing.  Today I have managed to find a good garage for my car who are honest.  I am delighted with this as one previous garage had not returned my last car and I doubt I will see a penny of that money I spent on it ever again.  The people repairing my car were “friends” and had done work on my car before without any problem yet suddenly they ignored calls and made excuses for not giving the car back.  The Police will do nothing as this is a civil matter – they are just  not interested at all.  Being without a car for so long left me in despair.  When I had to visit Elizabeth in Kent it was really awkward and I had to rely on buses, tubes and trains and nearly all my time was taken with travelling but I made the effort even when I was banned from the ward apart from visiting for only 1 hour.  Because of sorting out my car today I was unable to go to  my group meeting with the former patients but may invite some of them over soon. 

The most I could hope to see of Elizabeth if I am lucky is just 1 day.   I just hope that will be possible.

Last night I went out with my former work colleagues to a very nice pub for a Xmas meal.  I have another Xmas do to go to soon as well which I am looking forward to.

I have managed to get over to my gym several times this week even though I have not felt like going.  The classes are very good at my gym but now that I am not training for the bleep test I do not do very much in the gym itself.  I was also using my gym for  training earlier this year for the Marie Curie Swimathon and completed 2.5km – I used to do competitive swimming so this was not a great achievement on my part as in one training session we had to do so much more but that was years ago now.  Elizabeth and her sister took part in swimming lessons but they were not interested in joining a club which was my main interest when I was younger.

I have told my two daughters that this year I want nothing for Xmas –  I believe Xmas is too commercialised and I would like to see them donate the money instead to something like Chy Sawel.  I used to take Elizabeth and her sister to church in the morning on Xmas Day and they both went to Sunday School.   Xmas to me would be for everyone to be together and that is all I could wish for.  I also usually visit an old lady on Xmas Day and take her dinner –  we used to have her over and with my father who had Alzheimers but in the end it became impossible as they both became so disabled to the point they could not walk.

I cannot say I am looking forward to Xmas this year and certainly will not look forward to Xmas if Elizabeth is not allowed to come over.

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.