I found the debate very interesting and agreed with some of the professionals.

I got the opportunity to speak myself and reflected on my younger daughter who could not be there with me but said she would come another time. I just mentioned that the diagnosis of Schizophrenia as a child of 13 led to a prescription given whilst under section of Risperidal and that this was devastating to the whole family. I said that she was fine now but even on 1mg she ballooned in weight and that drugs were wrong in dealing with the trauma my daughter had experienced. It was hard to get her off 1mg and she relapsed and was referred back to hospital. I mentioned that the “cure” was a small private school in another area, not the drugs. She eventually came off this low dosage but she has everything to thank that school for and is now on top of the world. This shows mistakes can be made in a diagnosis and that drugs should not be so quickly given especially to a child but I believe it is wrong to force anyone as not everyone is happy to take the drugs due to the serious side effects they may experience. I have known people to get better on their own after 6 months without any drugs. It depends – everyone is different – it is a matter of choice and whilst some are happy to be on the drugs, others are not. Everyone should be treated as an individual and proper assessments done. I had private tests done on my daughter which actually show her health declining. The tests were done at the Bio Lab and this is the second lot of tests I have had done and from the initial test you can see significant decline.

Sick Society:

Whilst there are some mothers who want the drugs for their hyper active children, I believe first of all tests should be done like I had to take a look an intensive look at diet and nutrition. As Peter Bennett of Rehealth discovered -(I believe he was given Home Office funding to carry out research on youth offenders) it was proven that some had food allergies and some had B12 deficiencies etc, copper/lead imbalance. None of these tests are properly carried out as far as I know and my elder daughter has just been put on 14 mind altering drugs on after the other and sometimes several at a time. At the moment she is on Clozapine 300mg and Metformine 500mg and then on top of this I found out Lorazepam was being given and I complained about this. I have looked into these drugs and read books on them and contacted experts who have advised me. I have had some excellent expert advice lately about these drugs being contra indicated. As I did not get a chance to say everything I would have liked about sick society my question should have been – how come someone is taken off the drugs immediately if they get diabetes for instance and yet the test results I have produced show a substantial decline in physical health yet are just ignored. This is not good enough for me and as a mother I want to know where the facilities are for something to be done about this problem. The reason patients are drugged up so much is simply so staff can control them in the confined environment of an acute ward. If there was somewhere like Root and Branch want to set up or Chy Sawel with the involvement of Dr William Walsh there would be proper assessments being done and the other thing is reductions in drugs are not being done properly like I have documented – a leading professional told me you cannot take someone off a huge amount of one drug and mix it with another without causing psychosis and now I am challenging why on earth my daughter is on a section in the first place when this kind of thing would cause adverse behaviour in absolutely ANYONE! I cannot understand why these professionals ignore the physical health of a patient and just concentrate on drugging and if one drug does not work another is given until as I have documented a huge amount of drugs are given and I know people on as much as 1500mg of drugs. These people are kept in hospital – they are not treated fairly. It is wrong that a section should last for years and years without a proper look at someone’s underlying health problems. It is wrong that someone should be written off like rubbish and left in hospital because there are no suitable facilities. Patients are made to take these drugs and are forced under section and then Community Treatment Orders in the community and they can be recalled to hospital if they do not take the drugs but I can understand why they drug people on a ward but surely a ward is not the best answer for those who are unhappy to take the drugs, those who are suffering from serious side effects and health problems. I know only too well as a mother that you cannot just take someone off these drugs and that professionals need to be involved but I am shocked that from what I have seen the professionals do not seem to have the knowledge or else perhaps they know things will fail as they are reducing by too much leading to withdrawal symptoms.

It is a sick society that allows such cruelty and where are the facilities – where would someone go into to be reduced off the drugs. As far as I can see there is nowhere although I have been advised by a leading expert it has been done and will be done in the event of someone contracting diabetes. I think this is disgusting to wait until someone suffers from serious health problems and then what – what if someone dies as a result of the drugs – try finding a solicitor who goes beyond the Tribunals.

As for the Tribunals I have put in my comment on what I believe should be changed and have requested an appointment to see Sir James Munby QC himself so that I can further explain what needs to be done to improve matters. I understand a Tribunal looks at risk to the public, risk to that person – the patient. What about the risk to the patient if the care and drugs are not right and are affecting their physical health. This is why I have turned to Dr William Walsh – enough of this experimentation with harmful drugs – now I as a mother want to see a proper assessment and a thorough look at all the things mentioned on the private medical reports. An expert is also providing me with every bit of scientific evidence I need as regards the combination of contra indicated drugs.

What the professionals need to remember is if they were in my shoes and this was their daughter they would probably be doing the same.

Dr Walsh wants 20 doctors to train up and my daughter has agreed to take part in the kind of research I as a mother would be happy to see. This research looks at diet and sure enough I have noticed that certain foods would affect behaviour. What have I got to lose as a mother by requesting a proper assessment and look at holistic care as everything else has failed and my daughter now is going downhill physically.

No matter how much better facilities are provided under private sector care if the care is still the same and all about drugging at the same level without a review then this is no good. Someone is not going to get better this way and I have gone out of my way to prove this fact and have everything documented in the reports I paid for. I am not the only mother who has tried to help their son/daughter in this way but then the professionals step in and try to intervene in a not very nice way and that could be the entire team who all stick together no matter what.

If a more thorough assessment was done by someone like Dr Walsh then this could save some children being put on dangerous psychiatric drugs and I am in touch with mothers who have autistic children who say the drugs have made them worse and they are better without such drugs.

A professional does not see the suffering like the family do and the other thing that is wrong is that families are excluded and when I got up to speak at Carers UK conference Norman Lamb said he would be doing something about this but I have not seen any improvements. I believe that professionals should be sent to Tornio Finland to learn what wonderful care is being offered there. This is what is needed in the UK.

So, getting back to sick society – this is a society that dishes out drugs to children, vulnerable adults, autistic patients, elderly suffering from Alzheimers and those who are abused who really should have had counselling in the first place. This is a society that labels someone in order that the person concerned can access services, this is a society that does not take into account whatsoever that someone on 800mg say of mind altering drugs cannot function at times. My daughter tells me they are highly sedatory. She has to sleep in the afternoon and goes to bed at 8.00 pm at times. This is no life for a 26 year old who once had a job, once was studying and had a bright future ahead. She was placid, not violent but these drugs do not work for everyone and can have shocking effects on some and Dr Walsh identifies this in his book Nutrient Power and Dr Ann Blake Tracy in her book Prozac Panacea Pandora states the true facts. I as a mother have seen the effects of the drugs on my daughters and know now how harmful they are but to begin with I trusted doctors. I knew nothing about the drugs and it was only when I saw the effects of them that I read lots of books and did a lot of research into matters.

There is too much emphasis on Stigma and the campaigns can actually make matters worse because if ordinary members of the public were to be more involved and psychiatry more open instead of secrecy then people would become educated. I believe that certain newspapers make matters worse and portray patients suffering from say Schizophrenia with violent behaviour and as murderers/killers. Dr Candace Pert tells the truth in her book Molecules of Emotion and so does Professor David Healy – Pharmageddon. I am now reading “De-Medicalising Misery – a very good book I would highly recommend and I have attended a presentation by Dr Joanne Moncrieff who I greatly admire. This professional is someone who had time to listen to all the patients at the Stuart Lowe conference.

When I got up to speak I said I was against the labelling as my elder daughter just gave up when labelled with Schizophrenia. It affected my other daughter badly too and not everyone appreciates a label.

After the debate you could speak to the students and people who had attended and judging by some of their faces not everyone liked what I was saying and some absolutely reacted in a dismissive way. Of course I am critical of the treatment of my daughters however that does not mean I do not think there are any good professionals. I can honestly say there are some good psychiatrists but the bulk are pro drugging and that is just my personal experience. I said the main failure was lack of facilities in the community as someone like my daughter needs to regain her confidence and could not manage in a flat on her own even if there is a member of staff there. A place where she could make friends but somewhere where there is plenty of supervision and maybe one to one peer support and that does not have to be a highly qualified professional. It is friendship that is important and a young person could influence my daughter in the right direction.

There are lots of people I know who have sons/daughters just locked away. One young person I spoke to talked about symptoms and that if someone was sectioned there must be good reason for this. This person refused to even think that any wrong may be happening but training should involve meeting the families and learning more about that person – it is not a qualification at the end of the day that counts because it is real knowledge and interest and that cannot always be clearly indicated in the files that may be far from accurate. There is much money to be made by keeping someone in hospital and after many years – especially private sector and that could amount so I was told to a lot more than I had thought per week. The patient gets to the stage where they become more and more dependant and more and more disabled and then the excuse for not allowing that person out is “a risk to themselves”. Yes it is a sick society that decent care in the community cannot be provided which may be a lot cheaper than long term private sector hospitalisation and there needs to be a specialist centre incorporating holistic care like Chy Sawel as a matter of choice with the involvement of Orthomolecular Psychiatrists and I appointed one of these privately – this person could prescribe the drugs but knew a reduction should be done very very slowly and gradually unlike in most establishments and this is why things fail.

If patients end up with physical health problems as a result of the drugging then they in turn become a burden to the NHS. When is the Government going to step in and do something about this.

As for the most recent comments “she’s not doing herself any favours” well I am just a mother and have watching the decline of my 26 year old daughter and I am not alone in wanting something done about the situation and if there is nothing over here then the Government needs to send someone over to Tornio, Finland to look and see how things should be done here in the UK. The Government could also help by getting Chy Sawel set up as they would be saving money in the long term.

Got back from Madeira late last night.

It truly is paradise there and a wonderful holiday location. I found myself wondering what the care would be like for my daughter Elizabeth especially since people I came across in just a short space of time (a week) seemed very nice indeed and kind. They certainly celebrated World Mental Health Day in style and I was t here to witness the procession through Funchal – I thought this was brilliant.

Elizabeth would have liked it in Funchal and the hotel the Pestano Casino Hotel was brilliant. It is really hard to be back in the UK once again.

I have heard weather conditions are going to be seriously bad in November and this is when I will be driving back to Wales for another meeting.

I have not heard from social services in response to my email and need to chase this up now I am back.

I have written to both Asda and Tescos in response to their letters to me – they are only supporting Mind but where are the facilities to help my daughter. Nothing is being done about this and this is why Chy Sawel needs to be supported.

I have taken good advice from a leading expert who has told me the drugs my daughter are on are contra indicated and I shall now want a full review of her treatment as this combination is clearly harmful and this has been overlooked.

Elizabeth has written to me just a short letter whilst I have been away asking to go to Holland to see her favourite band play.

Elizabeth has also texted me to say she wanted to be taken snowboarding but I am not sure I could manage this – I am not the kind of person not to try something new even if I fail with disaster. I wanted to go on a spectacular ride but the person I was with in Madeira was not happy to go on such a ride – the basket ride. I thought of Elizabeth – if she was there she would have liked such a ride. Instead we just went on a cable car which was nice but I would have liked to experience everything.

When I telephoned Elizabeth I checked on whether she had been showed the report from the independent doctor which contains important information which I cannot state on this blog. I was not happy at all to hear that she had not been given a copy of this report and I think this is very bad indeed. A report made by a professional in the field of doctor should not be ignored by anyone and my daughter is entitled to see and hear what is in this report.

Anyway Elizabeth has sent several texts to me today and the letter was really nice to receive as well. I have bought my daughters nice gifts from Madeira and there was so much to buy there. Unfortunately a bottle of liquer had broken in my suitcase – it was one I bought from Nunns Valley and I was most disappointed. I may well have to go there again and would certainly recommend this wonderful country to anyone.

The place I thought Elizabeth would have been happy was in Porto Santo where they had the most glorious beaches with golden sand. Bearing in mind the peaceful location Elizabeth needs this would be ideal.

I have spent the day doing an enormous pile of ironing and am missing the nice weather already.

The cat Fluffy has missed us very much and is glad to see us back home again. The cat has been looked after by a close friend.

I shall be inviting some close friends round for drinks to try out the fabulous liquers from Madeira.

I will leave you with the latest comments from private sector care:

She……………..You are not doing yourself any favours.

What I as a mother objects to is the way my daughter is being dragged into matters by the team. Why don’t they just focus their anger on me as a mother and leave her out of things. It is not fair that someone should say “she’s not doing herself any favours”.

I am not asking for any favours other than I want my daughter to have proper care and a leading expert has given me advice in addition to that given by the independent doctor and I as a mother am not happy that such advice and opinion relating to my daughter and her care should be dismissed by the team. All I ask is that she be treated fairly.

I know very well that the team could slate me as a mother calling me names openly and discrediting me in every way possible. Well if they want to do this then they can go ahead as far as I am concerned – they have already done this in the files which I have in my possession but why not be honest – totally honest in coming out and saying what they think of me in front of the world. I would more than welcome this kind of honesty even if they make my name like mud. I would rather they do this than keep dragging my daughter into things as she should be left out of matters and be given the full picture as presented by the independent doctor and leading expert. I would have no complaints then – I do not care what the team are saying behind my back but I would prefer to have an open discussion any day. I do not mind criticism as long as it is fair.

Currently in Madeira staying at Pestana Casino Park Hotel which I would thoroughly recommend.  Not all the family here with me right now but this is a place where Elizabeth would like very much but Elizabeth would have difficulty in walking as she had to cling on to us to even walk around the shops when we took her out only last week.  She now suffers panic attacks.  Back home the environment is very different and an environment like this where we currently are is beautiful and peaceful – the kind of place that would benefit Elizabeth.   24 hr care

Elizabeth has asked to come home and I would have her home with the help of Rojene but this fell on death ears!  Elizabeth got no answer and it was a good job I was on hand as the Nearest Relative to read her the report from the independent doctor who did not sadly attend the recent meeting.  Elizabeth has a right to know what the content of this report.

Anyway  In note I have not had a reply from the social worker in response to my email.  In light of the fact the recent meeting was held secretly with all the family excluded and not even allowed to speak,  I asked for written assurance to confirm that no further attempts would be made to replace me as the nearest relative or to apply to the Court of Protection.  If anyone needs protecting right now it is Elizabeth especially from what I as a mother have seen going on.  I am not alone here and there are plenty of other mothers/parents who have suffered in this way – EXCLUDED and for those who think I am to blame – I was thrilled in the first place my daughter was sent to a private hospital – award winning for 2 consecutive years but I have now seen the full picture of what is really going on.

I cannot do anything else right now but despite being in paradise right now Elizabeth is always on my mind and I am sorry she is where she is right now – no one is happy that is for sure.

Just back from Wales visiting Elizabeth and we stayed at the most fabulous place.  A peaceful location and cottage in the location of a farm.  The whole family were together on this occasion and arrived separately.  My younger daughter had sought permission to have Elizabeth come and stay at this fabulous accommodation and surprisingly this was agreed  as it was for 2 nights and never before had this been agreed but also the rest of the family were down and of course would want to see Elizabeth as well.  Things are very amicable within the family and we were united in support of Elizabeth by getting together to join the meeting.

It was late when my younger daughter arrived after a dreadful journey and straight from work.  When I told her that we were expected to go very early in the morning to take Elizabeth back three hours prior to the actual meeting she just burst into tears.  This put me on the spot and I started to think we have had a long journey and this was all sprung on us and I then telephoned the next morning.  When I spoke to the senior member of staff I was shocked at the reaction when I said I would need to get advice on whether it was OK for us to go along so early prior to the meeting – the reaction was “you have to get her back”  –  I then enquired why and I was given a reason and pointed out that my younger daughter was upset and that she did not arrive until really late.  I also pointed out that I needed advice on this – after all the meeting was later.  “You have to  get her back”  –  it then turned into something of a comedy and I said Oh no I don’t  –  she said Oh yes you do and this went on and on.  It was menacing to hear the words “this will go against you”  –  well it is not the first time I have heard this threat.  In the end I received the required advice and was happy to follow this advice and return Elizabeth early but when we arrived the two people who were supposed to be there were not there at all and the first people to arrive were Elizabeth and her sister.  All of us arrived later and all of us sat in the box room for nearly all day long.  It was the first time ever the whole family were united at the meeting.   The meeting took a good part of the day and much was discussed without the family being included.  Elizabeth’s father received a recorded delivery letter inviting him to the meeting whereas I did not.  I had to find out the location of the meeting and details myself.  Elizabeth’s sister was once again upset by the occasion as she had hoped to come and support her sister but was left to sit there in the box room with the rest of the family.  It is one thing that I the mother is excluded but this is unacceptable in my opinion.   Elizabeth wishes to come home and I would have her home and with the help of Rojene 24 hour care I would be able to manage.  If Elizabeth was to come home I would appoint a nutritionist having read the book by Dr William Walsh but the last time I took Elizabeth away from services after a shocking incident there was no help forthcoming and this is what happens.  Apparently everyone is on a section where Elizabeth is and two years is a long time to be away from home and in this kind of environment.  Apparently some are kept for 3 years and if that was the case it would be a total of 5.  I know people whose sons/daughters are still stuck in hospital after much longer and I think this is wrong.  This is why I am trying to support Chy Sawel and it would be wonderful if this could be set up which could help many who the system has failed.  This meeting did not achieve anything like I had hoped and it could go on and on as no one seems in a hurry to do anything.

I have to say the system is certainly an eye opener.  Elizabeth after all this time has not seen a vital report and I made sure I read this report to her.  The report is about her so why did no one in the team read it.  I am sorry but I cannot disclose the contents of the report as it is confidential but what I am saying is that patients are treated like nothing and if a report is about them then they should know what is in the report.  I made sure I did this as Elizabeth is entitled to know.   That is the whole problem with the care system until MH and the law which can be easily distorted and this I have clearly seen.  It is shrouded in secrecy that is the problems whereas in Finland there is honesty and openness in the form of Open Dialogue in a place called Tornio and how I wish we lived there.

Elizabeth was very happy to see and have the whole family behind her.  After spending all day in the box room – the family in its entirety hung around for when Elizabeth was brought out with the drugs which apparented are “contra indicated” so I found out by an expert.  I intend to find out more about this that is for sure.  The nurse who totally overeacted to the fact I would not immediately jump to demands without consent and advice first was on hand to comment reflecting on earlier and the importance of returning Elizabeth on dead time.    It was like a teacher speaking to a child at school.    The rest of the family spent a happy time with Elizabeth apparently in Swansea and then brought her back and then the next day we celebrated a member of the family’s birthday  –  I also got a further ticking off by the member of staff for a minor incident – nothing to do with the drugs of course!  You can imagine how it must be for the patients themselves if this is how I as a mother am treated.  Elizabeth has only got to open her mouth and say the slightest thing and it could be blown out of proportion.  Like for instance her sister-  getting back to the meeting – she had agreed for her sister to accompany her and support her and then we all heard the opposite.  No team members were on  hand in the box room to witness my younger daughter in tears – they were all busy at the meeting themselves discussing things whilst we the family were left to sit there and none of us were allowed to speak a word when eventually right at the very end when only the date of the next meeting will be discussed.  I doubt I will get a copy of the minutes! 

We had a nice day today and spent most of the time with Elizabeth before dropping her off though the weather was not good. 

I do not know whether it is her choice or not but she only gets out twice a day and she seems to suffer panic attacks now which I had not noticed before.  We were out with her today and she could not immediately get out of the car.  The rest of the family and I are worried that the longer the time spent in hospital the more she will deteriorate and lose confidence.

Now I have to beg for more time off work to go down to another meeting which will be arranged shortly.  Some of the family like my daughter had to take time off work unpaid – and nothing much was resolved at all.

In the meantime I have been receiving advice from lots of people and someone extremely knowledgeable has been very helpful.  I am grateful from the help and advice of a leading expert who is extremely knowledge on the drugs and other areas. 

The knowledge I have gained I feel is so important that I should contact Sir James Munby’s office for an appointment to discuss these important issues.  The secret courts are being reviewed right now and hopefully that will mean a change for the better and more fairness.   I wish to discuss the changes that I feel should be made to the current system as I am in touch with many other mothers who are also in the same situation.

There could be huge savings to the taxpayer if something was done about the present system that is for sure.

Elizabeth has now been in hospital for about 2 years and has said “I’ve had enough, Mum”.   Elizabeth misses her family and her cat – she is miles away however the environment is more peaceful than here in London.

For the first time in 2 years I will be allowed to have Elizabeth off the ward for 2 nights, such is the strict control.   The entire family will be going down to support Elizabeth shortly but I will have to share my time with them as well.

I am extremely sad by what I have seen happening.   I have been warned that I am up against a lot of power so this goes beyond the nurses on the wards, many of whom want to see positive change and humane care.  

Mental health patients do not get listened to  – it is all about control.

Sir James Munby QC wants to make secret courts open and I hope to contact him shortly.

I am promoting the need for therapeutic communities –  I believe this is the answer rather than acute wards but of course this should be a matter of choice.  There is virtually nothing in the way of choice and it must be costing a fortune of taxpayers money to keep someone in hospital for a long time.  All I kept seeing was the same faces time and time again every time my daughter was admitted to an acute ward.   Surely something should be done about this situation.

The more I think about it I feel that Elizabeth is not in the right place. You cannot go by a glossy brochure or the title of Best Care provider that is for sure. It was the hospital’s recommended solicitor at the Bethlem who came out and said “same as any other” but I did not wish to believe her as I had read what I dreamt of in terms of care under private sector. I was unprepared for the exclusion/bullying that was to face me. It must be costing at least £1000 a week to keep my daughter under the private sector care but I would not wish for her to be on a shocking ward locally. In fact I do not believe my daughter belongs under any shocking care for mental health simply because the care is not right for her. An acute ward is noisy and volatile – no good. The private sector exclude you if they do not like you and ignore you as a mother and have caused damage in my family. It could be partly them and partly social services as all they have wanted to go is to get rid of me. None of this behaviour on the part of the team is doing an good to my daughter that is for sure. Wherever I go I think of my daughter in that hospital – she is missing out on her life, To make a song and dance about her even going up the road with her family to buy a box of chocolates for another patient – what kind of law allows this to happen. It was like at the Bethlem when not even a visiting room was provided and they would not let her just come down and stroke the kitten I had brought all the way to see her at her request. How evil and cruel are these professionals. The only time the smile was lifted off the teams face was when I revealed I was on the police training course – not once are the team honest enough to tell the truth. I would rather someone be nasty to my face than behind my back.

This is where I had to tell Dr Joanna Moncrieff who I met last night that she was wrong to think that things were getting better. I have personally seen no evidence whatsoever on this.

The Stuart Lowe Charity organised a fabulous presentation with Dr Joanna Moncrieff speaking – it was fabulous to meet her and I fully agreed with most of what she was saying apart from things are getting fairer and better. I in turn introduced myself to her at the end and got up to speak – I mentioned how these chemicals had affected my daughter and my daughter’s comments. Dr Joanna Moncrief mentioned about the Critical Psychiatry network so it would appear there are some honest psychiatrists – if only the majority would join the above. I must get her book the Myth of the Chemical Cure – this is very appropriate. I will later scan some details of the presentation onto the website but would fully recommend anyone to go and listen to what Dr Moncrieff has to say.

Elizabeth would have liked this event that was very nicely organised and very well attended. I would like to volunteer at this wonderful organisation myself especially with Xmas coming up and would like to take Elizabeth along.

Elizabeth telephoned during the week and the first thing she asks after is her cat.  The cat is better than all 14 mind altering chemicals that the various teams have pushed at my daughter.  Elizabeth was thrilled to see her cat recently but I have heard that the consultant psychiatrist was not too happy as she was meant only to be seeing the rest of the family.

The whole family will be getting together soon and I have booked a beautiful farm to stay in.  This is the very sort of place that Elizabeth could get better.  How I wish that I owned a farm but instead I live in London.  Having said that the more I think of it I am becoming more and more concerned .   The fabulous facilities and trips/outings mask disturbing things that have become increasingly evident.

Elizabeth told me a patients scrawled over the notice board in Cambian “psychiatry is abuse”  –  I have been on such wards many times to visit Elizabeth and what strikes me is how normal the patients are – I do not see adverse behaviour  – the only adverse behaviour I have seen is from the staff themselves in some cases.

Anyway Elizabeth said she is really looking forward to seeing me –  I have not had a nice letter inviting me to an important event like the rest of the family. 

Anyway I cannot write too much about what I am about to go through except it is quite shocking what is going on.

Tonight I had a nice evening out with my younger daughter at “The Spirit of Summer” – the venue – BBC Club.  I do not work for the BBC but I thought what they arranged was fabulous and I am very glad I went.  I got the tickets through my gym.  Elizabeth would have liked this very much – if only she was here.  There was one act after another and I was impressed.

Tomorrow I am looking forward to meeting Joanna Moncrieff.  I hope I get a chance to speak to her in person. 

On Saturday I have seen an event I would like to go to in Hyde Park Speakers Corner at 12.00 pm. 

Anyway this is a short blog tonight as it is late and I have to get up in the morning.

I wish I could share the whole picture of what I am going through right now however the truth always comes out in the end and I am in favour of the truth rather than secrecy and this is what I want to speak to Sir James Munby QC about.  My case will be a brilliant example of what is really going on behind closed doors at public expense.

My father showed signs of forgetfulness in the first instance and he did not seem to hear properly.  A diagnosis was not immediately given to my father but the first signs were not evident to me first of all as I had never come across anything like this.  Gradually the forgetfulness and other things became more evident and my father had gone to see his GP – the GP diagnosed him with Alzheimers and he was referred to the hospital ‘s Memory Clinic.  Things had been going on for some time and the first drug he was put on was Aricept.  It was described as some kind of a wonder drug but as time went on, my father did not respond so well to this and was taken off this drug.   My father was an active person – he was always working in the garden shed and even though he worked six days a week, his time off from work was never idle.  My father was Polish and came over to the UK after the War. 

I fought to get care in place for my father who could not seem to manage in his own property but moved in with me and at the time I had two young children.

It still sticks in my mind someone saying to me “he will take over your life”.    My father was the kind of person who could not sit there doing nothing as he  had always led an active life and had made it known to me that he would not be happy in a home.   I took these comments very seriously and went out of my way to get some care in place by way of Day Centres and in the morning Home Care –  I was working part time at the time and bringing up two young children.  First of all the Day Centre which was opposite where I worked took him for a few days but then I had to fight to get more care in place as my father had a tendency to go out walking and get on buses for long rides.  Sometimes my father would be brought home by Police and he was known to them as being a vulnerable adult.   My father was not so happy having been used to a home of his own living in my house with two young children so a flat on ground floor with a little patio garden was purchased for him and it had a warden there.  My father also had an alarm which he frequently pulled to an emergency response unit and one day I was with my younger daughter who was having maths tuition when I got a disturbing call.   “Your father has been in touch – he claims his flat has been ransacked and everything is in a mess.  I suggest you call the police and get round there”.  I told them that my father had been diagnosed by this time as having Alzheimers and that it was possible there was nothing to worry about but I would check it out.    As soon as I could, I drove over – it only took about 10 minutes from my house to do this.  When I got there my father was distressed and talking about the mess of his flat and that he had been burgled but everything was in place and tidy in the flat and I realised that this along with other disturbing signs was an increasing sign of his decline.   My father could no longer be trusted to pick up my younger daughter from primary school and I worked in the afternoons just up the road but by this time she was old enough to make her own way to and from school a short distance away and my father used to go round as he saw it his duty to look after the children but the tables had turned – it was the children looking after him especially my younger daughter who used to get something ready for her Grandad to eat before I got home from work.  My younger daughter also knew that my father would seem to carry a lot of money and it turned out he would go to the Post Office and collect his pension more than once a week.  He had a book and was well known to everyone there but having lost what appeared to be a lot of money, I arranged sadly for his money to be paid in to his bank account.  He had also lost a very nice watch and other things and I had by this time the keys to  his flat as you could not just replace these keys being keys that had to be specially ordered for security.  I did not like having to take over  things for my father in such a way and although when he was in his right frame of mind he had given me consent by way of Power of Attorney to deal with whatever needed to be dealt with the thing he took most hard was not having the pension book.  He reported me to the Police and the Police got in touch and asked if I needed assistance.  I went down to the Police Station to explain my position.  I tried to explain to m y father – it was of course impossible and I complained at the Post Office because of them allowing more than one withdrawal a week from the book leading to loss of money.   So I had to control that and pay the bills, make sure my father had food in as he would buy 6 packets of butter and loads of cooking oil and things that were just not right at all but he never stopped caring for the children and like I say my youngest who was at primary school recognised that her granddad needed help and it was for half an hour each evening that the children would have to return straight home from school as I finished work around  5.30 – 6pm and this was in order that the Day Centre could bring my father round by transport.

It then got to the stage that my father who by this time had every day at Day Centre/transport arranged to take him to and from his home and at weekends I would have him round so care had been increased substantially and I realised that it was not safe for my father to make his own way round to my house as there was a busy main road to cross.   The routine worked well for quite some time that my father would be brought back to his flat and stay there and then I would go round and help him get ready for bed and make sure he  had something to eat.  Every single day there was something I needed to do to help my father. 

The hospital had warned me that taking him off Aricept I would see within a month or so extreme decline and this was so true.  Suddenly my father who was once so active became disabled and needed a walking stick.  Before going to work I would be taking him to the hospital for appointments or his doctor and got a walking stick in place, later a zimmer frame.  Everything was falling on me including nursing care and I would sometimes have to stay round there.  It was suggested many times I just put my father into a care home but I could not do this as it would have been against his wish and the flat was quite suitable.  It was thanks to the Direct Payments Scheme that eventually my father was assessed as needing 24 hr care –  well I managed to get such care.  A typical day would be:

Up around 7.30 am – Home care services would turn up dressing, washing and providing breakfast.

Transport would collect my father around 8.30 – 9 pm to take him to the day Centre where he would remain until 3.00-3.30pm.

A wonderful organisation and charity called Crossroads would come and sit with my father getting him tea and assisting him for a couple of hours every day Mon – Friday. 

At 6pm the Polish carer appointed through Direct Payments would turn up and provide dinner and give the “medication” and help my father into bed.  This person slept on a settee bed in my father’s lounge of his one bedroom warden controlled flat.

Here is the “Medication” list of my father:

Asprin 75mg

Omeprozole 20mg

Movicol

Temazepam

Perindopil

Quinapril 25mg

Attenolol

Quetiapine

Diazepam.

That is quite a list for an elderly person who was nearly 90 years old and now having researched these chemicals I am disgusted by this list.  I knew nothing about any of these drugs before but one of the effects was that my father who was once quiet and placid became the opposite and could be abusive to staff and lash out. 

I soon found there was complete lack of understanding with some members of staff.  The care was working with the regular carers and my father was used to them but did not like it when several members of staff would say “crowd him” at the Day Centre.   Some staff coped better than others but some would complain about my father’s behaviour and lacked complete understanding.  At the  hospital after my father had suffered a heart attack,  my father being a very strong person recovered from this well and the hospital wanted to discharge him immediately but I needed a day or so to get all the services up and running but never should such a conversation have taken place at the bedside with a nurse approaching me as it would seem that my father could understand every single word being said and obviously was not happy being confined to bed in hospital but I will never forget the recognition of his understanding and seeing tears in his eyes.    It is wrong of some professionals to assume that someone even in the later stages of Alzheimers cannot understand what is being said around them.

There was many hospital admissions for my father and I used to struggle to get him in my car which was a people carrier as my father was wheelchair bound and on Saturdays I took him to a wonderful centre run by Age Concern.  I could not do much at the weekends as I had to be there to pick up my father and bring him home and wait for the carers who I had employed by way of direct payments to turn up.  Even going on holiday was impossible as respite was arranged but on one occasion my father had climbed a wall and gone missing – he had walked for miles in his slippers back to his old home crossing major roads in doing so. The woman who was now living in his former home was a  nurse and tried to take him home but each time he would direct her back to his former home.

Looking after my father for ten years or so meant sacrifices had to be made and time was one of them – as he declined, it became more distressing to watch and I had to spend more time with him but I was not going to give up – it was what he would have wanted to stay in his own home.

I would still find time to help my daughters with homework – the eldest by this time was studying for exams.  Elizabeth did not seem to get on with one particular subject – IT and was playing truant from school.  She did not seem happy – her best friend had moved to another area but then I was relieved as she seemed to make other friends and always knew what she wanted to be –  a chef.   I paid for private lessons for the IT and hoped that would be the answer.  I felt that the main problem was my father and my younger daughter who would come home from school with her jacked covered in chalk and her face scratched and refused to talk about it but eventually I got to hear and went up to the school to complain.  It got to the stage where my youngest refused to go to school and no longer wanted to live any more and this got her referred to the doctor and hospital.  The hospital sectioned my younger daughter and diagnosed her with Schizophrenia.  She was sectioned for 2 weeks and I had to arrange emergency respite for  my father at short notice as I could not cope with them both.  When I heard she had been prescribed Rispiridone like my father had first of all been put on I was horrified and complained.  I did not want her to be on these drugs and I noticed she had suddenly ballooned in weight.  My daughter would be called “fatty/psycho and mental” in the street and I was extremely concerned as this drug they had put her on seemed to make her even more anxious and restless.  It did not work at all but she was only on 1mg.  I got dreadfully criticised when I listened to my daughter about her not wishing to take this chemical and the team of course were in favour of continuing this.  She got referred to Gt Ormond St but I started to look at private schools as I felt this was the answer and I used all m y savings to pay for three years of private education which has been the making of my daughter.

Getting back to my father,  I continued to struggle but I am not the kind of person to ever give up.  I managed to focus my mind on other things too and I had plenty to focus my mind on what with certain terrible incidents that had happened relating to my younger daughter but all along I thought Elizabeth was doing OK –  she had been chosen to go to Finland to work as a chef.  I had no worries about Elizabeth then and never could have envisaged what has since happened.  

Anyway my father sadly died in hospital several years ago after a hip operation at the age of 90.

It is very hard looking after someone with Alzheimers and watching them decline and I would praise Crossroads, Age Concern and everyone including two very good social workers who went out of their way to help my father.

It is because of the good social workers under the Adults Division that I tried to get my daughter Elizabeth transferred there instead.  Of course this was refused.

The best thing that helped me was having direct payments for my father – if only just a little bit of this could have been provided for Elizabeth – in front of the EMU group Elizabeth showed lack of understand regarding direct payments but she was never one to ask for anything.  Sadly if you do not ask you do not get and that lead to unfairness – for instance if clear instructions are not given for a trial then nothing is done.  If someone cannot pick up the phone and ask they go without.  There are people stuck on never ending sections that have become institutionalised this way when they are no risk to society but if someone has not got the strength to go through with a Tribunal and appointing and dealing with solicitors and also if a team try to persuade someone otherwise and influence them in their decision then a patient is not being treated fairly at all.   A team have nothing to lose by keeping someone in their establishment for years raking in lots of money – this is the difference – with my father social workers helped tremendously and all I had to do was just keep the records of payments and even if someone cannot do this there is help and support.  Whoever thought of Direct Payments is brilliant but as for Personalisation this is not working under MH as when I heard nothing had been provided after 6 months I stepped in to arrange hypnotherapy – I could have found out the answers in just 1 hour as to what my daughter wanted and then the team could have just provided.  This did not go down well at all but I had witnesses in terms of friends who accompanied Elizabeth and it was like a miracle to see my daughter temporarily cured and this is why I cannot understand why on earth this is not included in NICE guidelines as it worked and what is more my daughter asked to go again.  Why is it like a post code lottery when this is provided by SOME NHS authorities.

I have documented how Elizabeth was transferred at short notice from the Bethlem (Beckenham) to Cambian in Wales and how I was so pleased about this at first. I had read about what I thought was fabulous care and facilities.  Sure enough my daughter has described the facilities and food far better than what is on offer under the NHS locally, however, there have been some disturbing things that have occurred. I was obviously shocked to hear from my solicitors that a further attempt was being made to get rid of me as the Nearest Relative and this would explain the reason I was excluded from Day 1 by the team.  I have only ever listened to my daughter who is not a risk to the public and have spoken up for her as I felt she was being ignored and right now she is quite rightly unhappy at being held on a section that could go on for up to 9 years. Apparently, Cambian keep patients there for a long time – as long as 3 years. so I heard but we as a family feel she has been there now over a year and further time spent at the Bethlem and locally. I as a mother and Nearest Relative had the right firstly to call a Manager’s Hearing but of course this never took place as the file was refused to my solicitors.  Now the Tribunal complete with independent doctor is due to take place soon.  It has been very hard to get all of this in place as I felt that capacity was being played upon by the team -Elizabeth would never just pick up a phone and ring her solicitors for example. Then to my shock and horror I discovered by accident that the entire team were going to the Tribunal except for myself, my solicitors and the independent doctor and it is lucky I got to hear about it.  At last we have a date for the Tribunal but I understand that the Consultant Psychiatrist has been to see my daughter alone asking her if she really wanted me to be the Nearest Relative and I think that this is very very wrong.  I have also got to hear today that at the CPA meeting apparently the team are not pleased that my daughter was brought over to me.  I feel very threatened by the team’s reaction towards me as a mother.  There are so many of them and I have been warned that it is very hard to get someone off a section and that I am up against a lot of power.  I know only too well that I have been subject to bullying like I have never experienced before in the way of exclusion.  When you think how happy I was for my daughter to go to Cambian and then to my shock and horror I find out that all these things are being plotted behind my back and it is not a figment of my imagination.  I have proof in writing how the team tried to distance me from my daughter.  I have proof of the reason why they wish to get rid of me as the mother. A team should work with you as a family whether they like you or not.   A team should not assume or guess in any way.

I believe the team are hiding behind the excuse that I as a mother will try and influence my daughter to stop taking the drugs.  They are using this as an excuse when in fact it is much more personal than this.  I have already said that I am not qualified to take her off the drugs and even if I am not happy I would not convey my opinion to my daughter as I know she could be severely affected with her health if she was to stop taking these drugs unless she had professional  help and I am not a professional.  I am disappointed that the team should focus heir personal dislike on me as a mother to try to get rid of me and it has been very upsetting to be targeted like this. For instance we live a long distance away and it takes a good day to drive down from Wales and this is not taken into account – just an extra night would be nice to spend with  my daughter but this has been flatly refused and as a result it is now not just me upset with the care given. I am now waiting for consent for leave coming up but have had no response despite two emails.   The team say it is at my wish my daughter was sent to Cambian as I wanted this –  well yes I did as I had read so many good things about it but I did not bargain for this kind of treatment/control – even at local level I have never encountered anything like this.  At the Bethlem there was also very strict control but I understand they did not want visitors or attention.p>

My summing up of care under the private sector is as follows:

Better facilities so I am told “its like a four star hotel, Mum”.

More to do – cookery and outings not available on the NHS.

The location –  peaceful and quiet.

The food – good – a far cry from what is on offer under the nhs.

The environment – extremely strict – get up early during the week and have chores to do – focus on personal hygiene – various groups to attend.

The environment according to my daughter is not always good.  It is not a good environment according to Elizabeth to be surrounded by other seriously ill people. The worst thing is the relationship towards family has been affected by the attitude of the team ie lack of communication/exclusion.  from Day I.

Not once have I been invited to a meeting.

I was given a slot for supervised calls supposedly at my daughter’s request at a time when surely the team knew I could not ring.  Elizabeth told her sister this was not at her wish.

Elizabeth said it is very strict and you have to go along with the team and that she “has her reputation to think about”  –  I gather from this they make her feel bad if she was to refuse to do what they ordered.

Elizabeth is 26 but not even allowed out to go to the corner shop alone and has now been there for over a year.    It is wrong that a team should try and influence Elizabeth but things have happened –  ie her solicitor changed which she would never have done herself –  the tribunal got dragged out as they kept saying she had not given proper instructions to her solicitor.  Now the latest the questioning of my daughter as to whether she wants me as the Nearest Relative and this is overstepping the mark professionally surely.

Now apparently the team are not happy that my daughter was brought over to see me.

For a while the care worked better under Cambian when another doctor took over briefly and this doctor was very good –  he communicated with me and that is the main problem with the team at Cambian.  There is lack of communication and lack of inclusion.  I feel their dislike of me is personal as the consultant psychiatrist said “I have heard all about your past behaviour”.  I was denied leave, I was denied access by phone and all the time Elizabeth was phoning me.

It is not  Cambian and the facilities/outings/food but the way the team have responded towards me as a mother. I was overjoyed when she was given a place but am now not happy –  The CEO Mr Asaria has not got back to me.  He was supposed to get back to me after a couple of days and never bothered. I feel the CEO does not care otherwise he would have telephoned or written by now.  It is harmful to to try and sever contact with the mother(in my case) just because a team does not like you with the excuse that I would advise/influence or try and stop her taking the drugs.  That is the issue the team hide behind It would be far better if they were open and honest and direct. There would be no complaints on my part however it is good to see that not all psychiatrists are bad.  I have just bought a new book called De-Medicalising misery which is edited by Mark Rapley, Joanna Moncrieff and Jacqui Dillon.  I am delighted with this book. Elizabeth texted me today and she sounded calm and positive.  There is no reason to keep her locked behind closed doors for many more years to come. This is an infringement of human rights. I feel concerned at the fact that once the Tribunal is out of the way and should Elizabeth stay where she is that I will be very vulnerable without the backing of my solicitors. So far, I have twice requested leave from Cambian but received no answer and I have booked a farm house cottage for my forthcoming visit when the Tribunal will take place.

I am well aware that the Tribunal will focus on elements of risk and safety but it is off-putting when a team have reacted this way towards you with disregard towards the person in care. It is not my daughter’s wish to be caught in the middle of a dispute with the team and myself based on unfounded beliefs surrounding the drugs. It is wrong of them to adopt bullying tactics. All I can hope for is that Elizabeth will be released from section and transferred elsewhere under a team who will work with me and the family. Elizabeth mentioned she liked Devon.  She has talked of wanting her own home and I would be prepared to buy her a home of her own but so far social services have not responded to me on the possibility of this an what support could be provided. I feel 3 years is too long to keep Elizabeth in hospital and feel that it has been nearly 2 years if you combine the stay locally and the Bethlem in total.  There is no way that I or the rest of the family want to see her decline under a similar type scheme locally as before that didn’t work out. All I want as a mother is for my daughter to be  happy and go forward (not backwards) with her life.  All I want to know is that she is safe and being looked after – she will need a lot of support as she has once again been in hospital a long time. It is supposed to be very difficult to get someone released from section and this is terrible and costing the public a lot of money when most people are of no risk to the public.