Yesterday I decided to take Elizabeth to the Chocolate Show held at the Olympia Exhibition Centre.   I was already in this area first thing in the morning and had to go back to collect Elizabeth for this show.

“I liked the fashion show very much and watching the demonstrations.  We then went to a tasting event held by Hotel Chocolate which I enjoyed.”

It was great to show Elizabeth around the surrounding area that I know so well as I spend so much time there.

Today we have been up very early to go to the gym for a class.  In the afternoon we had a visit from a personal trainer I have appointed to come to the house.  Although I have joined Elizabeth in local gyms, she does not get use out of them so having a trainer to come to the house will be a very good thing.

I have hardly been at home this weekend as we have been out most of the time but I would like Elizabeth to regain her confidence and independence and there is only so much I can do but I am very pleased that Elizabeth has not got to the stage where she completely refuses to go out at all.

With nothing being provided it is left to me to try and provide things to do while I am at work and at the weekends I take Elizabeth out places.  She thoroughly enjoyed the Chocolate Show and the costumes were fantastic.

I am hoping that the new trainer will help Elizabeth so that she can come away with me –  I would like to take her to Finland to see for myself the wonderful care on offer in Tornio.

Elizabeth flatly refused to walk up the road halfway on her own and even walking to the end of the driveway she could not do and only walked to where the car was parked and just grabbed hold of the car.  She has complained of double vision and feels like she is going to fall.  She certainly has a deep fear of going out and that needs help and encouragement.   Today I had to go shopping and buy some presents for friends so we went to the local town in the car and to begin with Elizabeth felt very ill and later she was OK once out for some time.  It takes a while for her to settle down.  So I had done the shopping and there was somewhere Elizabeth wanted to go today and I decided to take her straight there afterwards.  It was really just a sales event and there were various things on to attract new customers as the venue had new owners.  Elizabeth said she felt hungry and there was a café inside.  I ordered food and we waited and when the food was brought over to us Elizabeth could not eat without feeling very ill to the point of feeling sick.  I had to abandon our table hastily with her to the nearest toilets and was not too impressed when I got back to find the food had been cleared away despite me telling someone there.  Fortunately the food had not been thrown away so Elizabeth was able to take away some of what she could not eat.  From this venue we have just arrived home and I need to in a minute wrap these presents up as friends are coming round tonight.   Whilst we were driving back in the car I wondered how the care home coped with this kind of behaviour that I am seeing more and more on a regular basis the same thing.  How do you get round this behaviour –  well I made a point of asking what the care home did and Elizabeth told me they were very lenient with her and that is her own words.  All I can say is that I do not believe in just saying OK do not bother then.   No I believe in getting her out no matter what as always she enjoys herself once out and once settled down.  It is not like she is this way all the time and therefore I think I am doing the right thing by insisting that Elizabeth comes out with me somewhere or does something.  She would go nowhere otherwise and when I asked about the care home apparently all too often when Elizabeth said she did not want to go out they accepted that or maybe they tempted her with the chemical Lorazepam as and when required.  Well she is not going to get over things unless she goes out somewhere in my opinion.  How ever is Elizabeth going to have a normal life if she does not go out anywhere.    So today I contacted an organisation who send personal trainers round to the house and I am hoping to hear from this organisation.  Elizabeth will be able to do some fitness exercises and maybe this trainer could even take her to the park just up the road where they have outdoor gym equipment and this is very good for fitness exercise.  I hope that I hear this week from these people so that I can quickly arrange what is needed and what I myself cannot provide.  If Elizabeth had remained any longer institutionalised things could be even worse as this “fear” could deteriorate even more at least Elizabeth wanted to go to this place and did not refuse.  What a shame she could not enjoy the lunch at this venue.  So far the very best care I have found is in Harley Street with Susan Hepburn.  I am going to see what wonders these personal trainers can do with my daughter first as clearly the chemicals are not working at all –  only on Abilify did I see symptoms of bulimia or anxiety to this extreme  and never before have I seen dizziness to the point of disablement.  This chemical is not doing any good and I intend to report these important issues to the FDA –  with Elizabeth being treatment resistant this could well be the reason and not only will she need an appointment to see the neurologist but one in Liverpool and I must check to see if the Professor concerned at Liverpool Uni is back yet.   I forgot to say that the new social worker is coming yet again on Monday in my absence.   I will tell Elizabeth to write down things that she needs.  Last time there was a person centred approach that went on for six months and nothing was provided so Elizabeth needs to write down what she needs so that something is provided otherwise once again nothing will be given just like before.   I must arrange with my carer to pick up the chemicals from the hospital –  now things are different no longer can I have the convenience of collecting these drugs even though at times I had to wait around for ages -I still think this was the best arrangement as it is expensive to provide carers to do all this running about on my behalf on top of everything else.

There is such a thing as integrated care in the area where I live and I just do not think this works – the care does not seem to be in the hands of the doctors/nurses any more and this led to deprivation of treatment because an assessment was declined by non-medical personnel in the first instance.  I was forced to have to look for private care and then when this failed in order to obtain the drug Clozapine on the fourth day I had to look for solicitors to help in the matter as this could have caused serious injury when no one neither- medical or social care professionals cared.

Recently we have been subject to what I see as bullying/harassment/intimidation which according to the Manager of the Home Treatment had nothing to do with her and orders were being given to her team elsewhere.  I have reported this previously on my blog about phone call after phone call and visit after visit but I recently had to report to the CQC about my fears of the difficulty in obtaining the drug/ blood tests now that care had been transferred to another team – community MH team where the “treatment” has to take place in another area miles away.  This gives immense difficulty to my carers as Elizabeth is suffering from Agoraphobia and not all of them drive – this has to be dealt with during the week and I work full time – surely a better arrangement could be made but it appeared not when I called at the local MH unit.  I was told that I had to go to the neighbouring borough and take Elizabeth there for a blood test –  I was then given a supply of packs that enabled the blood test to be undertaken at the local hospital but I had to get in my car and drive to the neighbouring Borough.   I now have to arrange for one of my carers to have to go all the way to the local hospital as the Pharmacy is only open Mon to Fri 9.00 am until 5.00 pm and I work in Central London.   Before I could go and pick up the drugs from the MH unit on a Saturday.  This was a good arrangement.

So my experience of integrated care is terrible.    Life threatening to the point that no one will deal with you –  uncaring when a former patient’s wishes are not listened to.   I hope that the CQC will look into this thoroughly and what has been going on and I have messages etc to prove it all.

This week I received a recorded delivery letter from the community MH team consultant psychiatrist and recently we have been advised of a new social worker – one who has not directly been involved in the initial incidents.   So I picked up this letter on my way to work until to read that they were coming round the same day to my house.   No notice given so how could I get a day off work without having any notice whatsoever.  My carers sometimes take Elizabeth out so on the train on my way to work I had to telephone and make sure they were in as they announced they were arriving at 11.00 am.  I then tried to rearrange this appointment but no one bothered to ring me back.      So despite  my attempts to cancel the meeting went ahead without me being there and the letter said “how best they could help”  –  after five months not one ounce of help has been given to the family or to Elizabeth and it is cheaper for her to be at home than in an institution and would not cost a lot to provide just a little as what is needed most of all is someone – just a young person to come and take her out somewhere and encourage this.    I am disappointed as there is no help through the local carers centre either whatsoever.  The first thing I asked about was their scheme where they appoint someone to call and take the person cared for out for an evening or activity of their choice.    When Elizabeth came home and did not want to return to the care home this was one of my first places I visited as I remembered this worked well before previously but now the previous provider has been taken over by the Carers Centre and most of their activities are during the day and I benefit from nothing.  Recently we visited on a Saturday and I had to bring Elizabeth along to this.  They had like a drop in centre and buffet lunch and I wished to question about how things were progressing for this scheme and they could not answer my question as the person concerned was not there.    When I contacted them during the week I found that they claimed never to have received my form.  I was told they would check their records to see if I sent it in or not.   I responded that I keep excellent records myself and that I would do likewise.  They then said that they had not received my form at all that they had no record of my request whatsoever.  Previously I spoke to someone else there who I wanted to act as a mediator for me as I could not bring myself to speak to people who had put my daughter’s life at risk the first instance. We discussed this scheme they had to provide like a “buddy”.  So I checked my records having been told there was a six month waiting list for this scheme and when I checked my records I  had sent the form in on the 29th of July.  When something is funded through councils I suppose I can see why there is no help – in fact there may be help for others but not in my case at all – no help whatsoever from anyone in this Borough.   I hope the team are reading this as they know all about my blog.   I do not trust sending in the new form by post and so will have to get someone to hand deliver it to the Carers Centre and that way I will have a witness that it has  been delivered and on what date and of course there will be a six month waiting list and Elizabeth will be at the very bottom.

The meeting went on in my home without me being present like I was saying with a carer present who reported back to me everything just like the home treatment team were reporting everything back.   So the consultant psychiatrist and new social worker turned up like they said in their letter and talked about a reduction in the chemicals.   I have pointed out but to no avail to the three consulting psychiatrists from the Home Treatment Team that Elizabeth was experiencing dizziness on these drugs and the advice of a leading expert who claimed it could be because the level of the drug was too high.   Now it has come to their attention Elizabeth has stopped smoking since coming home from the care home where everyone smoked.  This apparently affects the level of the chemicals and therefore this means there could be the possibility of a reduction which I am delighted about.  I am hoping that Elizabeth can manage on less chemicals after all she managed without any at all thanks to the team in the first place when no one wanted to give them despite my efforts.    So I am happy about this and the consultant psychiatrist said that the reason the visit was arranged so hastily without any notice was due to the fact she was about to retire.  The new social worker questioned Elizabeth on what she enjoyed doing.  The fact is she is not going to hear everything that is needed and it is not much. What is needed is someone to come round and take her out a couple of times a week places and accompany her for a few hours.  Surely this would be cheaper than what the private hospital and care home would cost?   I do my best at the weekend and it is not easy sometimes to persuade Elizabeth to come out.   Today she flatly refused to go to the gym for the early morning class.  I have given her two options – either you come to the gym with me or you walk halfway up the road on your own.  Yesterday I had to do the same two options – either you go for the gym induction or you come out with me to meet the survivors group I go to.  In the end she chose the latter.  Now I have said that I need to order a trainer to come to the house as I am paying £30 a month for Elizabeth’s membership at the gym and it is a waste of money if she refuses to go just once a week and so I would rather pay for someone to come to the house – a personal trainer who would take no nonsense.  This has to be a young person of course and I am going to look for this next and organise this so that Elizabeth does some exercise during the week whilst I am at work.    Today she wants to go to an event nearby that has lots of things going on and I would have to drive there and I have agreed to do this.   A friend and one of my carers who is not a young person has just telephoned me to say she has three times offered to take Elizabeth out during the week and each time she has refused.  There is no way on earth as a mother I want to see her refusing to go out altogether and I am determined that this will not happen.

So getting back to the new social worker – this professional apologised for the short notice in an email to me.   I had written and requested that in order that she gets to hear what is needed most of all she needs to speak to everyone in the family not just me and I have given her some dates when I can possibly get yet another day off from work.  It is one thing asking Elizabeth what she enjoys doing however there is a problem at the moment as not only myself but my carers are having trouble in getting her to go out anywhere and I am not the kind of person to take no for an answer but I do give choice.  I cannot drag her out of bed to go to the gym so I have given her choice and that is fair in my opinion.   The choice I am not allowing is to lie around doing nothing at home.  When I am at home I have things to do and there is no time for myself any more but I am not complaining as I think this is not a huge problem at the moment but could be if I was to say OK then you stay in if you want to .  I would like Elizabeth to have a normal life – as near normal as possible so how is she going to regain her confidence if I just take no for an answer.  Every time I take her out it is painful for me to watch –  someone with such fear of going out for no reason other than lack of confidence, feeling dizzy on the drugs – getting herself in such a state she is ill yet once out with me she has a great time and gets to meet wonderful people like my friends and going out for nice meals, seeing interesting places and going on fantastic courses such as INTAR and ISPS – I expect at the care home and hospital in order to get her out this is where the Lorazepam came in “as and when required”.  I refuse to give this highly addictive chemical on top of the chemical she is already on.  Elizabeth soon forgets her anxiety and even amongst huge crowds and it was busy last night where we went and we had to go on escalators and Elizabeth is afraid of heights.  I believe in perseverance in order to overcome fear.

Now I am going to turn my attention to the system of benefits.   I as a mother would love to see Elizabeth in a job earning money and she did once have a job and worked –  I know it is not possible right now.    If I was not here to help nothing would be done as only now  have I had this letter after five months of being home that certain professionals wish to know what help is needed.   So ATOS is the organisation used for dealing with PIP claims and there is a six month waiting list due to backlog so I was told.  In order to get this you have to justify whether someone is disabled or fit to work and this should be interesting.   As no one was helping I telephoned.  I have dealt with the application and I have  been told that an assessment will be required.  Like I have documented there are good days and bad – times when I can get Elizabeth out and other times when it is very difficult and all the time Elizabeth clings to my arm as she thinks she is about to fall and claims the drugs are affecting her sight and she has a fear of falling to the ground.   I hope that they will send their assessors to the house to see her and I have no idea if they will announce that she is “fit for work”  –  I intend to inform everyone of their decision.   I would be overjoyed if my daughter was fit for work as I would love to see her move away from the mental health care system.  If I did not work myself I could not do anything with Elizabeth right now but it is so hard and it is made hard by a system of care that does not care at all and does not appreciate the impact when the family and person cared for are getting on OK and that all is needed is a fraction of what could be spent elsewhere. In other words a saving to the taxpayer and I myself am a taxpayer and am interested in seeing where money is wasted and where it could be better spent.    Without Elizabeth venturing out on her own anywhere – a prisoner of her own mind –  how can she work  –   in order to work you need to be able to concentrate to a degree on what you are doing – how can Elizabeth concentrate when she is on a last resort chemical that makes her so tired and dizzy she has to lie down after taking it.    I would like to see her do some voluntary work either with animals or in a charity shop such as Mind.  I tried to get jobs for her even whilst she was in hospital but now she is home –  there is more hope however Elizabeth is more disabled now and that is what hospitalisation has done for her.

Anyway I am now going to look for this personal trainer for Elizabeth to come to the house during the week.

  

Now that Elizabeth has been home 5 months things should be running smoothly but this is not so.

Elizabeth needs monthly blood tests otherwise she would be refused the Clozapine.   When she first came home I immediately took her for a blood test at the local hospital but the Pharmacist refused to give the drug and so did the consultant psychiatrist and two others he had in the meeting.  I had to take her to Harley Street where I tried to get private care in desperation.     Now there has been a change in the care and the fact I rely on “carers” in the form of close friends to help me look after Elizabeth whilst I work I did not want there to be any further problems like last time so I needed to sort things out and you cannot do this effectively over the telephone.    It is not a good arrangement that Elizabeth is expected to go to a neighbouring Borough which is a fair distance away from where we live.  It is a lot to expect for my carers to have to trapse all that distance away in addition to what they are doing for me already as there is no help in this Borough.    First of all I went to a team based in this area only to be told she had to go to the neighbouring Borough and there was nothing they could do.  I then went to the Council as not one councillor had bothered to help me before when there was a problem getting the drug which left Elizabeth without for nearly 4 days.  Of course no one was available and I have not had a call back.    The team where Elizabeth has now been transferred to from the Home Treatment Team said that it takes time to put anything in place.  Well I said it has been 5 months now –   I spoke to someone I had not spoken to before however this team are now responsible for the provision of the drug and blood tests so if I am not told of the blood tests and that the drugs are there for collection it means that my carers will have a wasted journey and I do not want them to be messed around or my daughter left without this drug and back to square one where they have to re-titrate because no one wants to help.   I then went to the local hospital and felt that they had transferred my daughter to another team but if the other team were not helping in terms of arrangements where my carers could collect the drugs and have the blood test done nearer to home that I could not see why this could not be done at the local hospital as the arrangement did not seem to be working out.   I was told that there was nothing that could be done to help me and was offered a taxi but I drive and was put in the position of not having any choice but to go to this neighbouring Borough on this occasion.   The person from the “new” team did not phone back and neither did the Councillor.   Elizabeth could never get to this place in the neighbouring Borough herself and relies on people to take her and she has been stuck in a hospital environment for over three years and so suffers from Agoraphobia.   Sometimes she makes herself ill before going out places but always calms down but it takes a while for her to do this.   Eating out is the same and today I was taking someone out for their Birthday.  It is very sad to see this –  a lovely meal but always Elizabeth appears to make herself ill.  I am trying my best to help restore her confidence and take her out at every opportunity but to go to an appointment on her own –  she will not even walk up the road as she feels like she is falling and feels dizzy all the time because of the drug she is taking.  She said her biggest fear was that she did not wish to fall and this is sad as she is missing out on sport and activities –  she is limited to what she can do and cannot walk far –  she gets very tired but at least she is not asleep in the afternoons and in bed by 6.00pm.   After going to the local Council we went to the hospital but  the Pharmacist – again refused the drug in the first instance  despite the blood test once again refused and said “we have had this similar conversation before as I remember”.  He could not stop smiling and I did not think was very nice or appropriate especially as he was refusing treatment and I felt in the first instance this was against medical ethics.   When a hospital has washed their hands of my daughter if she was unable to get the drug or blood test who is responsible.  Noone should refuse treatment putting someone’s life at risk.  Anyway I decided that I was not going to watch daughter’s life being put at risk again by a team who would not step in if once again a situation arose like last time.    We just came up against one brick wall after another leaving me with no other option but to give a certain ultimatum.     After being refused this drug we then went across to the mental health unit  where I hoped a better arrangement than having to go long way away to have a blood test and get the drug prescriptions in hand could be made.  I was told there was no other way and my daughter would have to go to the neighbouring Borough.  So they make no allowances here at all in this area.   I complained about the recent harassment as well and felt that the care was not under the control of the hospital as it should be.    When things like this happen and someone is deprived of treatment as in the first instance where we could not get the drug anywhere who do you turn to.    Well I turned to every single leading politician –  only Mr Lamb responded and mentioned about the CQC but apparently the CQC cannot look into individual cases –  well why on earth not?    It is simple I do not want a repeat of last time and had to take a day off work to sort things out.

Today I received a letter from the Director of MH who called the care holistic well I do not think it is holistic at all.   This is the care locally – Cipralex, Risperdal, Abililfy, Olanzanzapine, Quetiapine, Promazine, Clonazepam, Diazepam, Lorazepam and a skin medication the GP forgot all about until I reminded her as this should have only been given short term.  What is holistic about this?   When someone is treatment resistant they cannot metabolize the drugs and there is a research programme that all mental health trusts should be interested in going on at Liverpool University and tests should be given to patients before being put on one drug after another and the reason they do not work –  well they do not work if someone clearly remembers a event that happened years ago so they could be saving a lot of money by giving far less drugs which could have implications and place a burden on other areas of the NHS.   I am appalled that Elizabeth has been offered yet another drug only recently –  I should have asked this consultant psychiatrist what this drug was but an expert thinks it could be an anti muscarinic or anti-parkinsonian drug  – this is not good so I sought expert advice about this and I have asked the GP to refer Elizabeth to see a Neurologist.  It is sensible not to give any more drugs in the circumstances.    Anyway it is not just local care where the care is far from holistic –  below are other examples of anti-holistic care.

Under the Bethlem she got put on Metformine and Clozapine but first of all they mixed the Quetiapine and Olanzapine together which caused psychosis.  No wonder it is called the National Psychosis Unit – they caused the psychosis and slapped on a section, banning me from visiting my daughter.

In Wales under Cambian the same treatment carried on except the consultant psychiatrist who tried to stop me from seeing my daughter and I have all the proof –  this consultant psychiatrist increased the Clozapine to 350mg.  Only recently one consultant psychiatrist offered a new drug for my daughter for a physical condition no doubt to be mixed with the chemical Clozapine but the first thing I would check out is if the drugs were contra indicated because no one – no GP could find any reason why she was on an off label drug for so long.

So I told the Director of Mental Health that under his hospital my daughter had been put on lots of drugs despite being “treatment resistant” (poor or non metabolizer).

At the care home they put her on even more drugs including a heart drug called Bisoprolol and Senna and highly addictive Lorazepam as and when required and she was smoking there and an expert told me that smoking can affect the level of drugs so at home she is not smoking and is not on the highly addictive Lorazepam as and when required.  Elizabeth has something far more therapeutic – her cat.

Anyway I passed on to the Director of Mental Health information regarding the wonderful courses myself and Elizabeth have been on recently ie INTAR Conference Liverpool and I was most impressed with this and I was delighted to see what wonderful professionals there are there who wish to move forward with the times.   In Leicester recently at the ISPS Conference I met Professor Read and Dr Jaakko Seikkula as well as Dr Marius Romme – well I was most impressed and it was good for Elizabeth to meet with some wonderful survivors such as Rachel Waddingham.   I have said that these courses could benefit professionals under the local team as long as he made sure new practices were put into place such as open dialogue and only then I could agree with him about his holistic care.

So my day off as you can see has been taken up with hanging around and waiting to see people and then having no choice but to go all the way to the neighbouring Borough in order to get the blood test out of the way and I have a supply of these packs now.  However there has got to be a better arrangement and I am still not happy even though staff were helpful once I had got there in person.   Before I had arrived at this place and before a Manager had seen me in the MH foyer no one rushed to help and if this had been my carers this would have been a bad situation and distressing for Elizabeth.  I noticed a phone left on the side and asked if I was being recorded!   I was told they recorded everything there and found this very amusing.   Anything between a nurse and patient should be kept confidential in my opinion however when a blood test is due and I need to know about this then it is bad if there is non communication as to procedures and the collection of drugs resulting in distress and hassle for not only Elizabeth but the carers.  I believe the CQC should investigate and look into cases whereby treatment is declined and when you come out and say this members of the team do not care and this is very worrying when you feel that a team will refuse treatment putting someone’s life at risk and then an organisation such as the CQC are dismissive.  Although I have to say that the second person I dealt with from the CQC responded extremely well to me over the phone –  it is a good thing to draw such problems to the attention of people such as this and I would go one step further – the next time I attend a conference I would get up and speak about it in front of professionals as I may be just a mother and someone that the team do not like however I want to see an improvement in the current care system and I know that this can only be possible at senior Government level.  When no one can help you in a crisis situation leaving you to have to try and find private care for treatment then there needs to be a system where there is someone you can turn to such as the CQC who do in fact have the power to intervene and do something.

It was mid afternoon by the time I had sorted all this out and we went out for a nice meal –  I was meant to go out tonight but do not feel like it now.  It was a lovely day but on such a pleasant day it is a shame my time was taken up with unpleasant matters concerning my daughter.

Tomorrow I will be doing classes with Elizabeth at the local gym and she also has the opportunity to do personal training but Elizabeth feels very tired at times however the class bright and early on Sunday morning was good for both of us –  Elizabeth had to move away from the wall as at the zumba class the day before she was in a tight corner and refused to budge but at least she attended.   I am arranging some classes for her at home during the week whilst I am at work.  I think this is the way forward to regain her confidence.   It is a pity I do not live near the wonderful Bowlby Centre as I would arrange for an expert to come and see my daughter as I was most impressed with their course I attended not long ago.

So tomorrow will be a nice quiet and peaceful day – no hanging around hospitals waiting –   I am so happy I have got this out of the way.

I believe that exercise and diet are extremely important.   Since coming home Elizabeth is not living off takeaways but I buy fresh food and prepare the meals at the weekend for during the week.  Occasionally thought Elizabeth will order a takeaway despite the fact I throw away all the leaflets.  More and more leaflets are delivered and I do not believe takeaways to be at all healthy.     Elizabeth has been having personal training sessions but I noticed how much she enjoyed the Zumba class that I took her to a while back and a friend took her on Tuesday evening.  Today I joined her in this gym where they have a swimming pool and classes.  I was able to join in and I have given up a fabulous gym membership in the Chelsea area –  I was getting home so late but the classes were good and they had a nice swimming pool – a private gym that had a beautiful l roof terrace.   Since Elizabeth has come home from the care home I like to be home early now and there is a class I could fit in on Tuesday and take Elizabeth at this local gym.  Anyway in addition to this I am appointing a trainer to come to the house – someone who does Zumba classes.  This should keep Elizabeth occupied during the week.

Today as usual it is difficult to get Elizabeth out of the house.  She is suffering from the condition of Agoraphobia and feels physically sick at the thought of going out and sometimes goes out of her way to try and get out of it.   I do not believe the answer is addictive chemicals and an expert said the answer could be psychotherapy.  Well this is something I may have to consider as well as the trainer coming to the house as I would like to see Elizabeth making her own way out and going out places but it is like she is still a prisoner – a prisoner of her own mind –  the drug Clozapine causes her to have double vision so she told me and she feels dizzy.  At today’s class she stood at the back of the class and there was hardly any room for her to  move as she was between gym equipment and I tried my best to get her to move forward but she flatly refused.   I think the classes I plan to arrange at home will benefit her as it is just a matter of regaining the confidence lost by being institutionalised for so very long.  It is not good to place someone too long in a hospital environment and then onto the care home hundreds of miles away from home where she could not get out on her own.  She would know her way around the local area but has not once ventured out alone in 5 months and this is because she feels dizzy.  Elizabeth has told me that she did not feel well at the care home and I am not surprised when I saw the level of chemicals they were pushing at her.

Today in addition to doing this class we went shopping –  I wanted to go to my usual meeting with all the Survivors but I had so much to do and we did not make it.

I am very pleased with Elizabeth’s progress but will try to do everything I can to regain her confidence so she can go out places on her own and tomorrow I am going to see if I can get her to walk halfway up the road by herself.  If this does not work then I may look at what is on offer at the Bowlby Centre where there are experts who could possibly help Elizabeth and I went to a brilliant course there not so long ago with Dr Bob Johnson on Psychosis.

Tomorrow I am getting Elizabeth up bright and early to do another class with me.  This exercise is good her as she has quite n appetite and is always hungry on this drug.    Today I made sure that when I got lunch out it was a very healthy lunch –  I am very happy that I can share the things I enjoy with my daughter and really look forward to the weekend.

I hope to finish the decorating  and then I can arrange for the CCTV to be up and running.  It is partially installed and I can remember a member of the Home Team seemed panic stricken about this well I will have peace of mind with this CCTV up and running like I said.

Elizabeth mentioned about Finland and I would be willing to take her to Finland where she once worked.   I would like to see the fantastic care on offer which the world should take notice of – it is no wonder why they have 95% success rate.

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Yesterday we went to one of the good things based in the local area (the local carers centre) which I do not have time to go to during the week when they have most of their activities but yesterday they thought of those who worked or who could not attend during the week and did a lunch and discussion, gave advice etc.  I had no one to stay with Elizabeth being the weekend and had to bring her along and I was asking about something there that could benefit Elizabeth but was told there was a six month waiting list prior however they are looking into things now.  Elizabeth has been back home for around 5 months now since coming home to stay from the care home and not wanting to go back.  Elizabeth has made good progress at home and there has not been one sign of abnormal behaviour because she is mixing in with my close friends who have kindly come into the house every day and to begin with it was made all the more difficult with the re-titration of the drug Clozapine whereby staff were coming in to the home twice a day and reporting their findings back to certain people.  Likewise my carers were reporting to me their findings but now we are left alone with no visits which is good.  If someone is to lead a normal life then this should be encouraged and less restrictive.   Since complaints were made to the Director of Mental Health locally the intrusive visits by the Home Treatment Team on nearly a daily basis have ceased and Elizabeth is with the community mental health team.  The drugs are running out now and not one person has been in touch from this team to speak of new arrangements to collect them.  It was easy before when she was under the Home Treatment Team as I could just go and pick them up on a weekly basis at the hospital on a Saturday morning.  I had to wait for quite some time but at least Elizabeth did not have to wait all morning like in some cases before.   Now it is left for me to telephone their office to find out where the prescription can be obtained which I will try and fit in tomorrow.

So we did not go out and do too much yesterday but we have not long got back from Leicester from the fabulous ISPS Conference where the professionals speak the truth which made a refreshing change.  I have already said that the place to go for honest advice is the universities like Liverpool, Leicester, Lincoln and Nottingham.  The only thing I wish is that all these experts/Professors would get together and do something to help my daughter and others given a life sentence of drugging with a label that is incorrect so therefore with misdiagnosis comes wrong treatment and that means the patient does not get better.   I have already told you that even without all of this advice I was suspicious and that is because I have two in the family who are on top of the world – where did these labels come from?   Well there is a book called the DSM and there are so many diagnoses in there it is laughable.    I would need to see some scientific proof before I would ever accept any label myself and when top leading experts tell me there is no bio marker for Schizophrenia I cannot just dismiss such good advice.  It is only when you research things thoroughly you get the full picture of what is really going on that is not documented in the press.

With wards overflowing through lack of beds everyone should be questioning mental health care as even if they are not affected then they should surely be concerned about the costs involved here for care that does not work simply because there are people who cannot metabolize the drugs and nothing is being done and others are given prescriptions of more than one drug and suffer from adverse reactions.  People should question what knowledge there is in the prescribing of these drugs by some psychiatrists.  People should be questioning the use of private sector care for MH patients for as long as three years especially when Elizabeth has come out of this “care” as disabled.  She is now disabled to the point she will not go out anywhere alone and is petrified of going out anywhere and it takes her often the day to relax and enjoy herself at all.  I was watching her at the conference and no sooner had we arrived she wanted to leave – the last conference in Liverpool INTAR she was not feeling well enough to attend any of the lectures.  I had already booked these conferences before I knew Elizabeth was coming home.   At the Tribunal in Wales when Elizabeth asked to come home it was simply not an option and none of them agreed to this.  So it has now been 5 months at home and I have not been the one that has denied the drugs as I have been accused.   It has been the team who have done this and still nothing is up and running smoothly and I am left to find out about obtaining the prescription.

Anyway  it is a nice day today and I do not want to be stuck in today so we are going for a drive to Hampstead where we have been invited to visit  by someone who attended the group I go to.

Close friends are back from holiday and have offered to take Elizabeth out during the week for activities and she has a personal trainer but I can only take her at weekends.   There is no support from anyone else in the local area at all.

Various people are writing books, making films, organising events, speaking out about stigma an discrimination however drawing attention to things is one thing – there’s plenty of people like this but then there are those who really know about the drugs and “treatment” with up to date knowledge and they are quietly working behind the scenes.   Then there are the survivors and former patients who bravely speak out and the parents who get in touch with me and we share the same experience of bad treatment ruled by a system that  that is cruel and abusive..   Who really cares about these patients,  if people really cared there would be a place like Earth House set up ie Chy Sawel or Soteria offering alternative care and I do not see why things should take so long especially when MH is now at crisis point and wards cannot cope – public money is being wasted whilst other services are suffering and there is no support in the community as I have documented.  Open Dialogue is the way forward.

The UK’s primary care of drugging/enforced drugging and ECT is not working for everyone.  Even if someone is treatment resistant or reports terrible side effects they are just ignored in favour of continuing with drugging regardless and drugs are often raised.  It is all about control and making money – if someone becomes disabled then they will need care and this care is provided by institutions as there is no help to families as no one cares.  It is a post code lottery where you live too.  It is not just long term institutionalisation causing disablement but huge money is wasted on tribunals long and drawn out.   So there is money being spent/wasted but not in the right direction – towards decent care.

Once someone has been given a label such as for instance “Schizophrenia” they are told by a psychiatrist they have to take drugs for the rest of their life.  Well at the ISPS Conference I met more than one person there who has learned to cope with hearing voices and is living a normal life since not being on the drugs.  One person I met was even studying for a degree and that reminds me of Eleanor Longden – here is another prime example and Rai Waddingham.    More than one leading expert has told me that THERE IS NO SUCH THING AS SCHIZOPHRENIA AND NO BIO MARKER HAS EVER BEEN FOUND.   THERE IS ALSO NO SUCH THING AS TREATMENT RESISTANT.  Well I as a mother have always doubted this label and have only seen problems with Elizabeth’s behaviour as a direct result of the chemicals pushed at her.

It is business because keeping someone on these drugs long term these professionals know full well they are going to have an effect on that person’s physical health.  As far as they are concerned they are not bothered.  As long as that person is sedated and drugged so they can barely move in some cases and are weakened to the extent it is easy for them to control then this is what they want.   They want someone to control and this brings money to in house services and employment to staff within the “business”.   It is also big business for the pharmaceutical industry and they can continue to use a person like my daughter as a human guinea pig for life as when that person develops a serious physical condition such a diabetes and such as Parkinsons Disease then there is a new market for drugs to be given and more experimentation on the poor patient.  Elizabeth is showing signs of injury as a result of these chemicals.  I do not call them medication as they are not there to make her better at all –  I have already proven to the team the damage they are doing by tests I had done at the Bio Lab which the entire team have dismissed.  I have had these tests done twice.  Now Elizabeth has been offered a new drug –  the drug is not one for psychotic symptoms and I did not ask what it was because I was so horrified but an expert suspects it could be to do with Parkinsons Disease.  So Elizabeth is showing the onset of Tardive Dyskinesia but none of them could care less in the local team.  I have told the GP and the GP is referring her to a Neurologist.

Under the mental health the more drugs pushed the better as I have seen done to my daughter.  Every admission to hospital saw an increase  and when several drugs are given at one time no proper tests are made.  I have proven that drugs are given without thought to the patient’s physical health and even social services have got involved in trying to push Clozapine in the past and they are not even doctors.

When Elizabeth was sent to the private sector no one was in a hurry to see her go and she was going downhill as witnessed by the entire family.  I heard they keep people for three years under a section and I supposed they get sent those people who like Elizabeth was constantly in and out of hospital.

The taxpayer should be asking questions about the treatment of mental health patients as this is having a knock-on  effect to other areas of the NHS such as A&E and maternity – why should these services be cut back on account of care that is not working and it is all because of the system of forced drugging and restraint and cruelty to patients.  It is about lack of support in the community and drugs being pushed without any thought –  I can see at first hand where the money is being wasted.

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