PSYCHIATRIC ABUSE LEAFLET – 05.2013

I need to update my above leaflet as even more drugs have since been prescribed for my daughter Elizabeth.  Drugging is the main “care” of this country and there is no dignity in restraint by professionals and I see this at abuse and under a Section patients are forced in an abusive manner to take drugs when they do not even work in some cases.    There is no regard for physical health and when I told one of the three consultant psychiatrists of the possible onset of Tardive Dyskinesia this psychiatrist wanted to give another drug.   Elizabeth is now clearly suffering from physical health problems and instead of all these harmful drugs an appointment to see a Neurologist would be the best solution.  To add to this list above of drugs  are Senna,  Bisoprolol and Lorazepam (as and when required).    I have copied a picture of Elizabeth’s cat – better than all the drugs in the world.  She has not taken Lorazepam since coming home which is highly addictive and neither has she had the Bisoprolol or the Senna – surely minimal drugs should be given not maximum.  .  When I looked up these drugs I was far from happy and when I telephoned I was told “we are not dealing with you Ms Bevis, Mr Bevis is next of kin”    .   Anyway I intend to write to the GP shortly as when I telephoned during the week it was not clear who the GP was and Elizabeth was down as being a “temporary” resident yet she has been home now for over two months and it is thanks to all my wonderful friends who have been helping me as I work full time.   If it was not for them, Elizabeth probably would have been forced to go back despite not being on a section or a CTO.   We have collected her possessions and Elizabeth has shown great happiness in being back home.   We have been closely watched for the past months by the Home Treatment Team who report back to social services and everything no doubt gets recorded on their records –  I know this for a fact. 

Meanwhile I have been trying hard to help Elizabeth regain her confidence as she needs to get out more having been imprisoned for far too long.   This weekend I have driven out in the countryside to a beautiful venue with outdoor swimming poor and I took her for a meal out.  I have promised to get together some of my friends for a night out as it has been a long time since I have had a night out and now we are no longer restricted by visits from the Home Treatment Team where we had to be back by 6.30 – 7.00 pm. 

I picked up the drugs on Saturday morning and waited for someone to come over to the MH foyer as per usual.  The nurse from the Home Treatment team is one who is notorious for asking lots of questions of Elizabeth which do not have any relevance to the drugs and treatment.  This person wanted to visit Elizabeth and I told him that on their records there should be a note to say Elizabeth spoke to someone during the week from their team and actually told them not to visit any more and this was witnessed by one of my “carers”.   We also had someone call round but Elizabeth was out with her sister at the time.   I then had to remind him that Elizabeth was not on a Section or a CTO and was entitled to a life that was the least restrictive. I told him the only thing that needed compliance was the blood test and that I needed to know when this is so that I could arrange for someone to bring her to the hospital.  So long as she is taking this chemical Clozapine what more to the team want –  she is complying with the drugs and hopefully eventually a review will be done as 100mg is the therapeutic dose and NOT 350mg.  This could be the reason why Elizabeth is showing signs of Tardive Dyskinesia –  definitely I have every reason to be concerned – just look at the level of drugs they have given her in the past and as she is walking I can see sharp reflex movements from her arms and even sometimes her mouth is showing some signs and these could be early signs and this is why I need her to see a leading expert.

Sometimes Elizabeth can have moments but not very often since being home when she suffers from anxiety – like this afternoon.  today. In the morning she was fine and we went to the local gym – it is just a short walk from where I live and in a nice area.  I hope that Elizabeth can go there herself in the not too distant future but right now she suffers a fear of going out places and refuses to go out alone and clings on to me when walking as she claims to feel dizzy.  I actually told the Home Treatment team that the help I could do with is some young students to call from their team and I would pay for them to take my daughter out places – I doubt whether such help will ever be offered and I will have to try and find such care myself.  I feel the best thing for Elizabeth is to be with suitable people of her own age, not with me and I am more than happy to pay myself as nothing is in place and she has proven her ability to mix well with my friends showing no sign of abnormal behaviour. I am now concerned following my phone call during the week that I do not know whether the GP has registered her like I thought they had  – she is only down on record as being temporary to the area and has been here now for over two months. 

Elizabeth is now registered at the local gym and has also expressed an interested in a new Yoga and Pilates studio also just up the road and I offered to take her there today.  I have also applied for a cinema card and have spoken to Elizabeth about a course at college.  She is happy to consider this as well and her sister is hoping to set up a business.  Elizabeth has proven herself as being artistic and ultimately I would like to see her working and not doing nothing but I have noticed how mental health patients are not encouraged.  ON a local ward patients were lying around and even whilst I waited for the drugs I overheard one patient talking about boredom and I felt worry for them as I have seen visiting Elizabeth on the wards there is nothing to do and should be just because it is the weekend there should be things going on and outings.  It is not just a case of under funding as I have seen exactly where the money is being wasted and I was very sad to read that a cancer patient had been deprived drugs that were too expensive when just look at what they have given to Elizabeth and they should be looking  the cheapest option and least drugs –  money is also wasted on long and drawn out Tribunals and when a hospital is raking in a lot of money per week ie private sector there is no hurry to see someone go from their “care”.  It must be a lot cheaper now Elizabeth is home and services also take a long time to arrange whereas it takes me minutes to arrange.  I am pleased that Elizabeth is now speaking up more for herself as I am accused of doing this for her. 

Last of all in my local area this weekend I noticed signs for a concert in a local park which I thought Elizabeth would enjoy.  Elizabeth likes music but we do not share the same type of music but I was still prepared to take her.  Sadly Elizabeth did not feel well enough to walk down to where the band was playing and wanted to return to the car immediately.   In her own words …………….”I felt like I was lifting off the ground and felt dizzy”  – how many times have I heard this from her and I have told the team and there are  other signs of physical decline too and I am going to put everything in writing to the 3 consultant psychiatrists who are involved and through the GP Surgery all I want is this referral as I do not want matters to get any worse and before going on all these drugs Elizabeth was fine.  Only as a child did she have physical illness in the form of severe Asthma,  this led to an operation of strangulated hernia and the only time she has had skin problems is when she was put on Cipralex which led to self-harm and suicidal thoughts.  Cipralex led to hospital admissions and a string of different labels including Aspergers but the team choose to ignore this and the diagnosis of PTSD which is backed by research.  All of this has led me to read books and look at the drugs and effects caused by them and labelling which I think is extremely harmful – the labels may well be wrong and I have cases in my family – more than one where people are on top of the world so the label has proved to be inaccurate.

Despite the decline in Elizabeth’s physical health she is very happy to be  at home and has said so many times and thanked me for taking her back.  If only I as a mother had read the correct books sooner  I would have had  great understanding as to the real cause of some of these so called “symptoms”  and long term hospital admissions to acute wards has done nothing for Elizabeth than destroy her confidence and it will take a lot of time before she is able to regain this confidence but I am positive this could be possible.

Last of all I wish to speak out about any cutbacks as there needs to be more funding towards the NHS as under the private sector where Elizabeth was sent miles from home she was not allowed out  and I thought she would get the holistic care I had read about in Wales and this was not on offer there.  So the care was the same but where was the patient involvement like I read about in Four Star Wards?  I saw strict control there –  I saw coercion –  I saw influence by certain members of the team to distance herself from me and I have proof of all of this in writing.

So there should be patient input on the wards, there should be outings and hairdressers, aromatherapy, nutritionists and OPEN DIALOGUE. personal trainers and some classes like I wished to provide at the Bethlem when my visiting hours were cut to just 1 hour.  Most importantly if family is excluded you cannot get a proper picture and if a member of staff or a consultant psychiatrist does not like you then they can write some terrible things about you and the rest of the team go by this instead of finding out for themselves. Where possible there should be inclusion with regard to families and any ideas from a family should not just be dismissed but discussed and listened to at least.  

I am now going to look to see where the best care is being provided in some areas as in Finland  – Open Dialogue.

Today I will first of all pick up the drugs from the hospital and hope they are ready as I remember last time having to hang around waiting for a long time.

It is better now that the team are not coming round – they were not doing anything other than questioning Elizabeth so what is the point and I can just drive up to the hospital and collect the drugs which is easier and leaves time free so that Elizabeth does not have to be back by a certain time during the week. A much better arrangement.

It is a nice day so I do not want to be stuck indoors. Hopefully Elizabeth will be well enough to come out with me but sometimes it does take some persuasion as she now suffers from Agoraphobia. It is not severe to the point she flatly refuses but when I have been without the car on a couple of occasions I have had to order a cab just to get her out of the house. Today I am hoping to go to Camden – plenty to do there and I would like to see that beach I have read about. I would also like to show Elizabeth round the area where I work but I do not know if there will be time today.

Before we head into London I must sort out this gym membership and Elizabeth has spotted a Yoga and Pilates studio up the road and this could be beneficial. She has asked to go there so I am pleased about this. These two places I shall find out about today. One problem is finding someone to take her out during the week. She has not once been out on her own. Being in hospital so long as not helped as she was not allowed out alone. It will take some time to build up her confidence and I see the gym as the way forward and what I need to find is the company in order to encourage Elizabeth. Such people could be students themselves – young people that I could pay to come round to my house and it would benefit someone who is studying for psychology/nursing. I could start by advertising at the local university. I would prefer this to her going to a drop in centre for the mental health. There should be more integration – since coming home Elizabeth has shown no sign of any abnormal behaviour whatsoever – if someone is treated the same as everyone else then this is the way forward. In a hospital environment where I noticed staff sitting in their office, patients knocking on the windows crying out for attention – this is not a therapeutic environment. I previously thought that the area I lived in would be wrong for Elizabeth’s recovery. However being in the home environment in itself has been beneficial and I never thought this would be possible. I would urge every mother to think beyond what they feel is possible but my increased knowledge has helped me in greater understanding and reading the right books is the answer which is what I would recommend to other mothers. At least at home I can see that Elizabeth is not being drugged up to her neck – here she is only on the Clozapine right now and there is no need for any of the other drugs especially Lorazepam as and when required. Also smoking has stopped since coming home which is a good thing as when the NHS promotes no smoking well if there is nothing to do for patients then it is boredom that leads to smoking and also nor forgetting the atmosphere of an acute ward. Private sector is no better as they just offer drugs too and I thought in Wales she would get the holistic care in accordance with Welsh Law. It also depends on the consultant psychiatrist as to whether you get good care or not. Bad care is when a patient is put under pressure by staff to do what they want them to do and this is especially the case when it comes to Nearest Relatives.

The rest are having Elizabeth stay with them for the first time. I certainly don’t mind Elizabeth staying with the family – it has given me a break this weekend. The rest of the family came to collect Elizabeth on Saturday but no extra drugs had been given to me by the Home Treatment Team despite repeated requests. They knew that Elizabeth was going away and I made more than one phone call requesting this. Elizabeth did not want to go to the hospital to pick up the drugs so I did and was kept waiting for some time only to be told nothing had been made ready. I then questioned them as to why I could not just collect the drugs on a weekly basis and I was told that they needed to check up on Elizabeth. Well what for when she is doing very well and is complying with the drugs so what more do they want and there are no problems here at home at all – they should concentrate their efforts on others now in my opinion. When someone is not on a CTO or a section I think this is an infringement of human rights. It is intrusive. It is restrictive as sometimes I have to let the various friends who come to my house daily know that they must bring her back in time for the Home Treatment Team. I have already reported that the team only last week were told me me they wanted to resume twice daily visits as in the first instance. I complained about this to the consultant psychiatrist who had to contact the community mental health team who seemed to be behind this and it was then agreed that she could have the drugs and the visit once a day. Elizabeth is 27 and she can do things for herself within the home but should not be treated like a child by the team. Thanks to being hospitalised for circa three years she has lost confidence to go out places. She needs help in getting out places and has not ventured out on her own at all since coming home. She suffers from Agoraphobia. She clings to you when you go out walking and feels dizzy as though she is going to fall so she tells me. It is a case of building up her confidence which could take some time and what is needed are some young people to call round to the house and take her out to places as I work during the week. It would be good for her to be in the company of decent young people. I have discussed with her joining a gym and there is one within walking distance of where I live but there is a problem of her getting there and I am having to find friends to take her and hope that this would build up her confidence. Getting back to the Home Treatment Team – it would seem they are just following orders which I think come from a higher source that seem to control the care in the local area. When someone is not on a CTO they should not be subjected to degrading treatment that impacts on personal life to the point they cannot have a decent life. When they come round to the house they question Elizabeth and the questions are becoming personal rather than asking just about the drug and how this is affecting her. I am sure they would not like me asking “have you been out today” – this is a constantly asked question and as I have said there needs to be help. As I am not getting help I am left with the prospect of providing it myself but such help would not cost a lot compared to hospital or care home and could be given by people who are not even medically qualified – there are no qualifications required other than a young person to be responsible, compassionate and decent/honest – someone who shares the same interests as it would be good for her to be integrated into society. No wonder why there is such a thing as stigma when all the services are just “in-house” – Elizabeth has been acting normally and getting on with people with no mental health problems – this is inclusion and n ot being made to feel different from anyone else. This is being treated fairly, not being treated differently with their so called “illness” played upon. Well I do not see it as illness but a “condition” and the symptons I have seen in the past are that of withdrawal when Elizabeth was having severe side effects on a previous drug and tried to stop it. Over two months now since Elizabeth has been home I can only see physical condition evident because of the length of time spent in an acute hospital environment where she did not get out hardly at all. So tomorrow I am going to ring up the Manager of this team and I am going to request that the drugs be made available on a weekly basis for me to collect from the foyer of the hospital so I do not have to hang around waiting for someone to hand them to me. The team can then be free to visit other people who are in need of visits and all this attention must be draining on the financial resources of the hospital when it is not needed in Elizabeth’s case.

As you all know from my previous blogs Elizabeth has been getting visits up until recently twice a day from the Home Treatment Team who come and give her the Clozapine. Elizabeth has been calm about the whole situation and has complied with the drug and retitration as she was left to go down to nothing. The main concern of this team is about her taking the drug now but when she first came back from the care home it was a very different story. The taking of this drug needs careful monitoring which I understand as Clozapine is a serious drug and one which Elizabeth did not want to go on in the first place – in fact she signed an Advanced Declaration to this effect but no one cared to listen. This was not worth the paper it was written on. Social services previously got involved in trying to push the drug Clozapine when she was on Quetiapine and I was most surprised as they are not medically qualified. Yes, she was having a bad reaction to the previous drug and kept being admitted into hospital going back now three years or so, however there is not even a proper national testing programme available in the UK and I believe this is the answer as some people cannot metabolize the drugs (Elizabeth is treatment resistant) and this in turn could save a lot of money to the NHS. I read a heartbreaking account of a young man denied cancer drugs that cost c£2000 week yet much money is being spent on private sector care miles from home when local care fails about this could be associated with the fact that in lots of cases drugs do not work and can cause adverse reactions in people like Elizabeth who are unable to metabolize them. Clozapine is an expensive drug as the “treatment” requires close monitoring but not on this scale now like they wish to reintroduce. When other people want care and attention this is being deprived yet Elizabeth is being watched like a hawk despite the fact she is doing so well in terms of how she is getting on with everyone at home and her behaviour. However I do not put this down to the Clozapine at all – she was clearly unhappy in the past. I do not think it is right or fair -she is not a child but a 27 year old adult and I as a mother treat her as an adult. She is encouraged to do her chores such as ironing etc. and she readily agrees to this. There has been no clashing between us whatsoever and that applies to the rest of the family and I believe this is because she has settled back into home and family and is happy now.

Tonight we have had a visit from two new members of the Home Treatment Team and a friend was looking after Elizabeth when I arrived home from work. The friend told me that they wanted to resume the two visits which were highly restrictive and I know it is not just a way of monitoring the drugs but to report back to social services but none of us can understand such measures when there are no problems. They sometimes used to arrive at my house at 12.00 pm and then again at 6 pm, meaning Elizabeth could not have a life as no set time could ever be guaranteed and we could not go out anywhere. Suddenly after 2 months despite the fact they could see she has been complying with the drugs and they started to leave the drugs in order that we as a family could ensure she took them in the mornings, leaving just one visit a day in the evening by them. We just cannot understand why all of a sudden they want to reintroduce this same restrictive regime of twice a day visits. Elizabeth is not happy with this at all and neither are we and we declined to give the drugs back as after all it had been previously agreed to leave them. All they should be concerned with is that she is taking them properly which she is and we are having no trouble with her at all. It is not nice for Elizabeth that a team should wish to destroy the time she has to go out with various friends during the day. It is not fair on her. Yesterday it took time to get through to the Home Treatment team and I asked if they could call later but no one got the message they came early and luckily Elizabeth was just approaching the house with a friend who was kindly looking after her that day who recognised the team outside my house. So messages are not read.

Elizabeth is 27 years old and has matured greatly. She does not need to be treated like this – she can cook and look after herself in the home. This is like punishment and I know that they are checking up on her knowing I work during the day all the time but never once do they ask how we are as a family – not once does anyone offer help and there is no help on offer via the carers centre either who I also telephoned today.

When I visited the Carers Centre I was told there was a month’s notice for Elizabeth to get someone like a companion to go out with via their scheme. She has had this before and it worked out well. However when I telephoned yesterday her name was not even down on the waiting list and I was told she would not be eligible for six months for this service.

The best thing that would benefit Elizabeth is some kind of help to go out to rebuild her confidence as much as possible as apparently she was very much restricted at Cambian, not being allowed out to the corner shop alone. I can see that I will be the one who has to provide this myself and I was thinking also about a personal trainer to come to the house so she has at least some activities to do during the day. At the care home she admitted she did not feel too well and had spent a lot of time worrying about the family being miles away and how everyone was. She did not get out a great deal there either but that she explained was because she did not feel too well. Everyone has noted the improvement in Elizabeth since being home. She is often out in the garden and yesterday was taken out shopping by a close friend and had a great time.

In the evenings I take her out for a walk in addition and we have walked a long distance recently as I have had trouble with my car. Always to start off with Elizabeth feels ill and makes excuses to go out and sometimes I have ordered a cab as it is so important that she is encouraged to go out. Once out she is fine but she has not been out on her own at all since coming home and yet would know her way around this area. This is something that needs to be encouraged as being in a restrictive hospital environment has made her more disabled than ever because she now suffers from Agoraphobia and complains of dizziness – this is evident mostly when she has just taken the drugs and she has to lie down. She clings on to my arm when walking and I am trying to get her to walk on her own and encourage that.

I am so lucky to have so many good friends who have offered me help and assistance with Elizabeth.

Elizabeth is excited because next week she will be staying with the rest of the family for a week so I have informed the Home Treatment Team of this fact today. Not one of the three consultant psychiatrists responsible for her care were available to speak to me though.

Whilst I have reported this condition called TD I fear Elizabeth has developed I appreciate nothing can be done immediately but it should not be overlooked in the future and yet more drugs offered to counteract another. Thoughts should be given as to saving money to the NHS and these drugs could be affecting long term physical health. Also concomitant prescribing of drugs should be very carefully considered as some drugs may be contra indicated. Therefore I believe Elizabeth should see a neurologist eventually.

Elizabeth is here with me now and is approving. There are no secrets between us and she would like to comment now – she said she wishes there were the same members of staff on a day to day basis although I can understand this is impossible but she also wishes it to be known that she is not happy with the arrangement of Home Treatment staff coming twice a day and she is saying she has told them that as this restricts her life. She also says she does not like be questioned constantly and I thoroughly agree with this – I can understand when the questioning is regarding her health but some questioning in her own words is “intrusive” – I am in praise of her use of vocabularly – it could be that she is reading a lot more since coming home and I have some very good books here – the one she is currently reading is by Becky Shaw.

Amyway, I as a mother am delighted with the progress of Elizabeth and how we are all getting on together as a family. Things are different now but I just wish the care was humane in the UK like it is in Tornio, Finland – I wish I lived there and there would be open dialogue and psychiatrists that take a different approach and do not force drugs. In this small area of Finland they have 95% success rate and I hope to visit this country to see for myself and hope that one day we will have open dialogue here in the UK as this is what all the former patients and parents I am in touch with would like to see.

Today we have had a lovely day out in Margate.

Elizabeth liked Margate very much in particular the sandy beach – there were quite a few people but not too overcrowded.

We had lunch out and walked along the front after paddling in the freezing cold water. There was an abundance of lifeguards on the beach – however Elizabeth did not want to go further into the water.

It is good to be able to take Elizabeth out with us and not think of her stuck in a hospital or care home miles away. She has missed out on so much but now I am very happy that we can share out days out and hopefully holidays in future.

Elizabeth spent 2 months in Finland working some years ago and still talks about what a wonderful place and I myself have been hearing about the brilliant care on offer. I would like to visit Tornio in Finland myself – this is place where they have got it right unlike in the UK where wards are overflowing and the system that allows enforced drugging and restraint is abusive in my opinion.

Open dialogue is the way forward and because quite often carers are excluded by teams it is no wonder why things do not work.

Anyway since coming home Elizabeth is slowly but gradually regaining her confidence. Today I handed her a pile of ironing to do and she got on with it after all I cannot do everything for her. The only problem I have is trying to get her to walk on her own outside the house and she has a fear of falling – even on the beach Elizabeth was clinging to me but we had to go shopping afterwards and I asked for her to bring some of the shopping in and it was only a short walk from the car to the front door but Elizabeth managed although in the first instance wanted me to come out which I refused because this is step forward that Elizabeth managed to walk to the car herself and I hope eventually will be able to walk halfway up the road without clinging to me. I am going to get someone to take Elizabeth to the local gym this week and see if there are any personal trainers who can come over to the house to collect her once a week. The gym, exercise plus nutrition and plenty of fresh air is the answer. Already Elizabeth is looking so much better.

I got up at 10.00 am, took my medication and my sister drove me and her friend to Camber Sands. We arrived at about 1.00 pm and found a car park to park and my sister bought a ticket for £10.00. We straight away went to the beach. It was a nice beach, the sea was calm and it was nice and sandy. We went for a drink in the café first of all which overlooked the beach. After that we went to sit on the beach and my sister had made a picnic which included sandwiches, crisps and many nice things. My sister and her friend went to paddle in the sea whilst I sat and watched and it was funny to see as her friend pushed my sister into the water which was cold and she screamed and was drenched whilst I sat on the beach and laughed.

We stayed for some time on the beach and then we had to watch the time as the Home Treatment Team come sometimes early and we had to be back but my sister was very upset as she got a parking fine. As she was helping me out of the car the ticket must have blown out and she is appealing against it but she was quite upset at receiving this ticket when she had paid and now has to prove it but there are cameras in the car park but staff would not give their names – I hope she does not have to pay the fine of £60.

I had a great time today and it was so nice to sit on the beach and be out in the fresh air.

Sometimes before I go out I feel nervous but today I was fine. I do not always feel like this though but today I feel good.

I have today gained a sun tan. It was not overcrowded on the beach.

It has been c2 months since Elizabeth has come home from the care home and we are all amazed by her progress.

Close monitoring of Elizabeth has been undertaken as she is on the drug Clozapine was being undertaken by the Home Treatment Team twice a day. This arrangement was pretty awful as it meant Elizabeth could not go anywhere or do much at all. Being on Clozapine meant that strict monitoring had to be done and they have increased the drug to exactly the same amount as it was originally. I also feel the visits by the Home Treatment Team are not just for health purposes but a way to record and report everything that is going on back to social services. The Home Treatment Team work very closely with social services – one of their nurses said to Elizabeth “it wont be long before you are going back to ……………… (The care home) …………….is coming to get you tomorrow.” Well one thing is for sure it is not for them or for me to decide upon. My close friend and family were sad to hear these comments and to read them. When I am at home in the evenings I have heard questions as to “have you been out today” said more than once to which Elizabeth will say “no” when in fact yesterday she was out with me in the evening and we went for a short walk. Today we went out for a longer walk as I am without my car right now, hoping to get it back from the garage tomorrow. I was talking to Elizabeth the other day – whilst she has been out with various friends of mine and has even gone fishing and now has a licence, we discussed about her having young companions to go out with and I am more than happy to provide/pay for this myself. I would consider suitable someone who is studying nursing/psychology and this could likewise benefit them as well. A young person could take Elizabeth to Zumba Classes during the week or swimming or cinema whilst I am at work. A young person – not me – could be just the thing to restore the shattered confidence of my daughter who now suffers from Agoraphobia. She is alright once out but the thought of going out can affect her to begin with – this is why I think someone from a nursing background would be most suitable or certainly someone who understands and who is caring. I would like Elizabeth to have a normal life and I believe integration into society to be very important not just mixing in with others who have mental health problems.

Elizabeth is complying with the drugs, is not a risk to herself or others she is doing well at home and can manage too. She has cooked dinner, she has tried to tidy up and clean, she remembers to feed the cat and said yesterday of her happiness to be at home. I am not pushing her to do anything much but do encourage her to go out with me at the weekends and was astonished that on three occasions she has come out in Central London with me amongst crowds and was OK.

This weekend we are going to a very nice event but I am not sure if Elizabeth will wish to stay all day – I hope the weather will be nice for this event.

I am also thinking of the possibility of a personal trainer coming to the house.

It is help for her to go out that is needed as she can manage in the house OK.

The weekend has been very good.

Today I wanted to take Elizabeth to join a gym with me my car is still at the garage and so we have had to walk/rely on public transport but this has been good for Elizabeth as before going out I notice she is making excuses not to and is suffering a bit from Agoraphobia but after going out she is happier. At the care home I understand Elizabeth was taken out once a week – it would either be swimming/walking. Here at home Elizabeth is getting out in crowded conditions more often and without all that extra drugging and this is rebuilding her confidence. She has not needed any of the highly addictive Lorazepam and I have read this can increase some of the symptoms of dizziness.

Needless to say everyone is commenting on the fact she looks much better since coming home as she can get out more easily and we are not situated on a main road.

Elizabeth is not being deprived of the chemicals by me as a mother as the team would like to think however she has not needed all the other extra chemicals on top:

If this regime of drugging was to go on for much longer I am sure her physical health would have been affected. Already there seems to be a problem. On a hot sunny day Elizabeth is freezing cold – her hands are like ice. These drugs have I am sure affected her physically.

Clozapine 350mg – is a highly sedatory drug which is being plugged by a Dr MacCabe who gives a shocking presentation and audio “Start Low – Go Slow” and pushed by the Nat Psychosis Unit who offer £45 so I understand towards their experimentations.

Elizabeth has complained it gives her double vision and she suffers dizziness to the point she has to hold on to someone when walking out. That could also be confidence as well since she has not been out that much over the past years. Going out is essential for her independence and being stuck in can lead to Agoraphobia – signs of which I have seen since her return home.

Social Services care most about whether Elizabeth is taking the drug but they do not know the first thing about drugs themselves. This is why I have had to turn to experts who know the drugs inside out even better than GPs and psychiatrists themselves as these are experts who work on the drugs. If the team knew about this chemical they would not have deprived it for several days and I was told to get her back there to the care home “we are paying for that”. Actually it is the taxpayer who is paying and how much is the taxpayer paying as I would like to know this information. Well it is far cheaper for my daughter to be at home as I am asking for nothing. If the team were to provide anything, the very best thing they could provide is a bit of funding in the form of direct payments in order that Elizabeth could go out more often with people of her own age which could also benefit those studying for say nursing, psychology as they can learn from a case at first hand and see fully her family background whereas at present if they look in the files they are likely to see some very wrong things written about me for instance and you cannot erase anything written. The things written are not nice at all or true and you can only get a true picture when you spend time with a family and not even from the visits by the Home Treatment Team who report back to social services so I have seen in papers. THIS IS WHERE WE NEED OPEN DIALOGUE AND THIS IS WHERE THE SYSTEM IS FAILING. The system plays upon capacity and confidentiality but should be open and transparent especially where taxpayers money is concerned and include the family – Elizabeth was upset when told to choose between her Mum and Dad and a member of the team could not seem to understand that when I spoke to this person not long ago. This was why Elizabeth did not want to go back and also she wanted to come home after her discharge from CAmbian but a condition of her release by the Tribunal was that she was NOT allowed to come home – they constantly play on the fact I would stop the drugs or encourage her to stop taking them but this is without foundation at all as you can see the lengths I have gone to get this chemical Clozapine not being a doctor myself and having read about the dangers of stopping this – not that it is impossible but in order to do this you would need very very close medical supervision and support from doctors so to everyone who reads my blog THIS IS SOMETHING I WOULD NOT ATTEMPT MYSELF WITHOUT HELP FROM A QUALIFIED DOCTOR AND I HAVE TO SAY THOUGH THAT ELIZABETH IS VERY STRONG TO HAVE COPED WITHOUT THE DRUG FOR SEVERAL DAYS ON THEIR ACCOUNT.

Well things are working out brilliantly at home with Elizabeth and we are all getting on – friends come in during the week when I work and at weekends I try and take Elizabeth out to nice places.

Recently in Liverpool I was delighted to meet people who really wish to see change in the UK and I am delighted with my new contacts.

Everything is wrong when the law allows enforced drugging to someone who is complying with the drug and a law that allows professionals to use such powers against families instead of helping them.

Anyway I do not think I will be getting my car back tomorrow so we will have to walk everywhere again but you can walk across fields nearby which takes you to the gym and you can even walk to the town and I wish to take Elizabeth into the town today to buy her some things to go with her outfit as we are going to a very nice event next week.

I thank God for the honesty and knowledge I have gained from various Universities and this is where to go if you want the latest advice.

I now have an important letter to reply to and have been putting this off so I must now do this – the letter is regarding Elizabeth and I show her everything and I will most certainly mention the report by the consultant psychiatrist of many years experience with the new diagnosis of PTSD and recommendation of INTENSIVE TRAUMA THERAPY. The people who are ignoring this report are not doctors and even if doctors do not agree with the report they have failed to give scientific evidence of the diagnosis “paranoid schizophrenia treatment resistant” – this is just a label in my opinion when underneath it could be a physical problem that remains unaddressed. If there was proper tests before giving these harmful drugs then there would be a more accurate case in giving out these labels and treatment of life time of drugging however there is not and that is why things are not fair in the UK. In Liverpool there seems to be a lot of support for change – then there are the Professors who would also like to see change but it is mothers like myself who have sons and daughters affected who want something done urgently – there is no excuse to say these things take time – this is nonsense in my opinion – time is money and they have a duty to the taxpayer in my opinion.