Elizabeth has spent an hour at the local gym. I dropped her off and left her – it is a small gym where there is almost one to one attention – she is 27 and an adult and I want her to be independent and have a normal life.    I do not treat Elizabeth like a child. I am trying to encourage her get out places on her own and ultimately without me being present.   I do not do everything for her either.    If she was invited out with friends of her own age( provided they were not offering alcohol or drugs) – decent responsible young people I would be extremely happy after all Elizabeth has spent c.three years in a hospital environment and drugged to the point she has come out of this disabled but that does not mean she cannot do anything at all.   Around the house she seems to have no trouble walking, cooking or doing normal things.  It is getting out that she needs help with.

Turning now to the Home Treatment Team – they have left us alone for 2 days because Elizabeth said twice she no longer wanted visits from them.  However today there was yet another call from someone called Kate who no-one had heard of when I phoned to enquire.  I was told that there was no such person working within the Home Treatment.   Anyway I have left the message on my answerphone with all the other messages for Elizabeth.  Yesterday I invited the Police around to see Elizabeth – I am more than happy for the Police to be a witness to all of this as I understand there is nothing they can do about a situation where a team do not leave someone alone which amounts to harassment as she is not on a section or a CTO.  She is fine and doing well at home.

When Elizabeth did not wish to return back to the care home the Home Treatment Team along with everyone else apart from the GP did not want to know and I was told to take her back but when someone is not happy why should they go back when they are not on a CTO or section.  In the first instance Elizabeth wanted to come home but this was not agreed.   The entire family are very happy now as they can see more of Elizabeth.  Yesterday she visited her grandparents and spent time with her father.   When someone is sent miles away from home it is more awkward to get to see that person and apparently there was a poor signal in her room which was why we could not get through.  So, it is much better now and Elizabeth is not only looking better but is so happy to be at home.

When I asked for an explanation as to why the Home Treatment Team persisted in coming round to the house and phoning the answer I got was that they wanted to check to see if she is taking the drugs.   I would hereby announce to all my wonderful supporters here on Twitter – “yes she is taking the chemicals”  if she was not this would show up on the blood test in any case and they as a team were not concerned before about her not having the drugs as they denied them in the first instance  and I was told I would not get them anywhere in the local area so I took Elizabeth to Harley Street. 

Here is some of the wonderful advice I have received:

“do not whatever you do discontinue the drugs without medical supervision even if you believe you are seeing TD.  Minor CNS disturbances are better than a rebound relapse and if you want to keep her out of hospital it is essential she is maintained on a drug until a more suitable treatment can be found.   Well in the local area on the acute wards the treatment is mainly drugs but I am delighted to see that in some areas there is positive change – open dialogue being trialled and I hope this will be available everywhere soon.  

After two months the team should allow Elizabeth to have a life like I as a mother am doing .  Since coming home she has got on with everyone in the family and I have had loads of friends helping me whilst I am at work – the visits from the home treatment team were to re-titrate the Clozapine which they denied her in the first instance.    The first people I rang were NHS England and the Home Treatment Team/Crisis Resolution Team and there was a crisis –  Elizabeth did not wish to return, the drugs having run out for Sunday evening but I immediately tried to get more supply of them to no avail.  Anyway I do not blame her and after she had spoken to the whole family everyone understood why Elizabeth did not wish to return.

So now the Home Treatment Team have done the retitration which was not necessary as it was LESS THAN 48 hrs being without the Clozapine – she was left to go down to nothing for several days and the Home treatment team have come over to my home for nearly two months.  We have all noticed that the questioning by this team had become intrusive,  not about the drugs or limited to how she felt but as though they were reporting every word.   It is a much better arrangement now whereby I go to the hospital every Saturday morning to pick up the drugs.

Recently Elizabeth was been offered some more drugs on top of this Clozapine.   I have been told they may be an anti muscarinic or anti-Parkinsons drug and that it would be much better if the drug was titrated down to an effective management dose ie the lowest that will work.  It is an absurdity to give higher doses than are necessary and to counteract the side effects with other drugs.   When you think that A&Es and maternity wards are being closed down not just in my local area but in many others – also cancer patients being deprived drugs for being too expensive there is an abundance of money being used on drugs that do not work for everyone under the mental health and in cases where patients are treatment resistant.  More emphasis should be put on the patient’s long term physical health.  I am currently arranging for her long term physical health to be looked at closely and the reason I took Elizabeth off that weekend from the care home was for private care and assessments as I was shocked at the high level of drugs being given at the care home and the fact that the consultant psychiatrist never once returned a phone call. 

Even if someone is not affected themselves or their families it has a knock-on effect when so much money is being wasted under the mental health system with disregard for long term physical health.

Luckily I have managed to gain a lot of knowledge and advice from those consultant psychiatrists who are honest – yes there are a few but the vast majority have only one thing in mind and that is drugs and even worse ECT – this is barbaric in my opinion.

When certain members of the team who have no knowledge of medical care ie the drugs get involved, this complicates things especially where in some instances they completely control the care  –  this forced me to turn to Harley Street where there were an abundance of consultant psychiatrists who could see you immediately when you needed an appointment.   At least this is all down on record that I as a mother did not deprive the drugs but made every effort as Elizabeth could have ended up seriously ill and now they want to continue to visit her and she does not want them to visit.   I remember Elizabeth being under this team once before and they soon cut back on their visits and cut them out altogether but now it is a very different matter.

I am not clearing any of the messages from my answerphone – so a message was left from a woman called Kate this afternoon from Home Treatment Team at around 4pm for my daughter.  I wanted Elizabeth to speak to her direct on the phone but when I phoned I was told there was no such person in the Home Treatment team by the name of Kate…………………………………………………………….   Hold on!  there is a knock at the door whilst I am writing this blog and Elizabeth has gone to answer the door.  I am going to see if this is the mysterious Kate ……………………………………………….  Sure enough there is a lady standing on my doorstep with her name badge back to front which I have seen many times before.  Well when I asked to know her name she said Kate –  I said Kate who?  I said “can I see your name badge please” and went to turn it over and this was not liked one bit by this professional who objected so her name is Kate Coleman from the Home Treatment Team.  No doubt Kate Coleman will go and report back and she could say anything – not everything written or done  by this team have been nice as I have seen myself so far.   If anyone is coming to my door and are standing on surrounding land I am entitled to know who they are – this woman could have been anyone!  so  it could be reported that I was unpleasant/threatening – anything they like  …. as I wanted to see that name badge the right way round and this did not go down very well at all.  She quickly left and did not look happy as she walked away.  I told her that such visits were harassment in view of the fact that Elizabeth has said twice that she did not want such visits.  Protection from Harassment Act 1997 could be used against such team members who persistently call and cause distress and harassment.   How would Kate or any of the other team members like it if I was to turn up on their doorsteps wearing a name badge back to front and even though she was enquiring as to my daughter’s wellbeing not so long ago this team could not have cared less as my daughter was allowed to go down to nothing with the drug Clozapine for several days which I desperately attempted to get it.   When a team is not offering or doing anything for my daughter’s care then they have no business to come round but in other circumstances such as  if I for instance did not turn up to pick up the drugs on Saturday then they would have cause for concern or if I refused to take her for the blood test then the team should have cause to come round but not now as they are not doing anything to help and I am sure they have other cases that are far more urgent to deal with.  Elizabeth’s  wellbeing is in the hands of other doctors right now so there is no need for them to persist with such intrusive visits.   They should respect and leave Elizabeth alone to get on with her life such as it is.  I would rather have the Police round to my house any day – they are most welcome to come round and I invited them yesterday.

It is an intrusion and disregard for privacy and right to a family life.   Elizabeth was getting fed up with the intrusive questioning and so were we all.    I have read things written in past files about myself and the family which are not true and some of it is nasty.  It is not nearly as bad for me as for the patients that some of these professionals deal with who have their liberty taken away from them.   Well  for the record I do not take any drugs and neither do I drink excessively –  I am saddened by the current events –  this shows how badly someone is treated under the mental health system.  If they cared they would leave her alone to get on with her life –  if they cared they would not have deprived her of the drug in the first place leaving her to go down to nothing when Elizabeth wanted to come home to live.

Tomorrow I am hoping to take Elizabeth somewhere extremely nice and I am so busy tidying up the house now that Elizabeth has moved into the bigger room.   

Anyway I was delighted to see the police round to my house yesterday and wish for Elizabeth to see them in a different light – for instance they helped my younger daughter once and they helped my father with Alzheimers who kept going missing.  So I myself do not have that bad an impression of the police because of the way they have dealt with certain people in my family.   I have seen worse response by certain MH professionals themselves. 

Elizabeth has been speaking more about her experience at the Bethlem and  how some members of staff wore their name badges the wrong way round  and I noticed this myself and lo and behold on my doorstep today a member of NHS staff with her name badge the wrong way round.    This should not be allowed to go on.

Elizabeth is sitting here with me now and wishes to say not only that she wants me to start the BBQ but last of all that “I do not wish for any more visits from the Home Treatment team”

Today we went for a lovely drive out in the country not far away from where we live to a beautiful place that was peaceful and it was nice to get away from the local area and somewhere very pleasant.

Since reading wonderful books such Pharmageddon by Professor Healy, Nutrient Power by Dr William Walsh, Prozac Panacea Pandor by Dr Ann Blake Tracy – just to mention a few,  I have gained a greater knowledge of conditions affecting some who are labelled as having mental illness.    Eleanor Longden is quite right – she does not see it as illness but as a condition and I went to hear her speak at the Institute of Psychiatry alongside Frank Bruno who I greatly admire and agreed with what he had to say on that occasion.  I have since been on a wonderful course at the Bowlby Centre with Dr Bob Johnson who is one of the greatest psychiatrists in the UK and have also seen Dr Joanna Moncrieff speak at the Stuart Low Foundation.   Very soon I hope to go to Leicester where Professor Read and other experts will be talking and I am most interested in Open Dialogue.

If everyone was to read the books that I have in my collection they would have a greater understanding.   It is all a matter of education and reading the right books and the courses I have been on  together with the conferences you can learn a great deal from.  

I do appreciate though that unless people are affected personally this is not a subject that most people would like to think about  — mental illness and I have come across such ignorance.

In one weekend I have noticed people staring / looking/ smiling.   Well they can look, stare and smile as much as they like however when I hear ignorant comments I feel it necessary to address this issue.   If I see someone laughing I will also address the issue.   I was shopping with Elizabeth this weekend and I would describe the area as – not the best and Elizabeth clings onto my arm when walking and I noticed a reaction from one person I thought to be ignorant and I felt I should address outrightly. I therefore confronted this person and that took the smile off his face.

At one time (some years back now) Elizabeth was running/competing in a team – she did a charity run once to raise money for a good cause.  She used to go both to a disabled running club and a County running club and was quite good, even though she was on the drugs but  not like she is now though. Clozapine seems to have made her disabled and she is very tired and limited to what she can do now.   Since being put on the drug Clozapine she has declined physically to the extent she feels dizzy when waling and that is why she clings onto me and also, the fact that she has been in hospital for far too long has led to  loss of confidence in going out places.   

I am trying to do the best I can in limited time and encourage her to go out places but not once has she felt up to going out  on her own in the local area even though she would know her way around.  She has a key and could go out as and when she wishes now – she is not on a CTO or section and technically is free however the treatment she has had has left her imprisoned in such a way she is fearful of going out alone and is fearful of falling and missed out last week on a concert taking place in a local park that once she would have enjoyed.  She is worse now than ever before in terms of disablement.

My experience this weekend whilst out shopping has not been the only experience I have had – on another occasione I got the feeling that staff in a local shop were giggling/whispering as Elizabeth was suffering quite badly from the effects of the previous drug – I looked around me and there was no one else around that this attention could have been towards.  It soon takes the smile of peoples faces when I confront this kind of ignorance as I feel people need to be educated and it is nasty behaviour.   At least the people in the surrounding area very close to where I live are decent and would not do such a thing.

Anyway, I have joined Elizabeth in the local gym and whilst she is not so keen to go I have mentioned that she needs to go to the gym and I have paid for a membership and it will otherwise be a waste of money.   There is a personal trainer there who is prepared to come to the house at the weekends and collect her and I am delighted about this. 

Every day this week we have been cooking healthy meals.  On a trial basis I tried a company called “Simply Fresh” who deliver the ingredients and you get a menu card and you cook and prepare the meals and immediately when I have got home from work we have been doing this and I have noticed the difference in these healthy meals as opposed to getting a takeaway.  

This week we will probably do the same and there are no end of recipes I have including a very good book I obtained from the Taste of London.

Next week I am looking forward to going to Alex’s Farm with Elizabeth and I really hope I get to meet Jamie Oliver who could do wonders with people like my daughter under mental health care –  Jamie Oliver could be the answer when the care fails because the drugs can lead people to craving for unhealthy food.   At one time Elizabeth was a vegetarian and then a vegan and wanted to be a chef herself.   When a patient is on these drugs they need to watch all the more their diet as the drugs drain the body of vitamins and nutrients.

The other thing Elizabeth liked was fishing of all things.   I have never been fishing in all my life but my previous lodger took her and she enjoyed this and now I have heard of the Angling Acadamy who I may contact as regards Elizabeth to find out what they have going on.

As there is no help in the local area I would like Elizabeth to have her own social life but in the right company and I am also hoping that she will go to college again as she did so well with the floristry course before.    I booked this myself as at the time Elizabeth was in hospital and there were people lying around doing nothing – that is the trouble with the care there is nothing going on within the wards at the weekends – nothing to motivate people at all and the main care is drugging.  It is no wonder why nothing is working and if someone refuses these drugs if they are sectioned they are restrained and forced to take the drugs and the drugs are not the answer.   Even if someone is helped temporarily they should not be used long term because of the effects on long term health and this is something I as a mother am looking into very carefully right now.

It may well be convenient for professionals to carry on drugging for the rest of someone’s life however there needs to be accountability for the fact that if someone is displaying clear signs of physical health problems this needs to be thoroughly addressed.

I must check now to see if Elizabeth is ready for the gym as she got out of going yesterday and it is for her own good.   It is also for her own good to do her own washing, ironing and tidy up her room and if Elizabeth does not want to do what I say I cannot force her but I can provide someone else who can motivate her but I am hoping that by ensuring she goes to the gym and encouraging that then this will not be necessary but it is only fair she does her own things as I work full time and it is for her own good.  The more she is integrated into society the more chance of her being able to lead a normal life as far as I am concerned.

The Home treatment team are not visiting every night and for the past two days have not been over as I told them that I was aware of the fact that Elizabeth had spoken to them twice now asking them not to call and that should be respected by them –  the response I got was that they were worried about her wellbeing so I then arranged for the Police to come round to report on her well being personally as I have nothing to hide.   It was getting to the point whereby it was more like harassment as when someone is not on a CTO or a section they should be left alone but that is not to say that there should not be any offers of help!   Well there has been none so this is why I am having to help myself but the best people that could help are young people of around the same age as my daughter – not me and I am not the kind of mother who wishes to be organising everything and controlling everything as I would like her to have her own life back but this will take time as it is all about restoring confidence and I am sure that will come in time so that Elizabeth will be out enjoying herself with people of her own age – that would be my greatest happiness.

It is a nice sunny day today in the UK and after the gym I will see what Elizabeth wants to do as I would like to go out somewhere today.   

I feel that  Eliizabeth’s treatment since coming home from the care home has been degrading.  She was kept waiting for hours on end being refused treatment  of Clozapine which I feel is degrading and dangerous but why should she be forced to return back if she did not want to?.  We have put up with constant visits from the Home Treatment Team regularly and some of them have been asking intrusive questions – I am sure they would not like it if it was the other way round.   Not all of them are involved in this kind of behaviour but there are a few and I intend to find out who has called this evening despite Elizabeth saying she no longer wants visits. “I just want to be left alone, Mum”  She has actually said this directly to a team member. Only last week Elizabeth told a member of the local Home Treatment Team that she no longer wanted visits.  We as a family have been very restricted since Elizabeth due to their visits which was to begin with twice a day.  Elizabeth is doing well since coming home.  She has made an effort to help in the house and gets on with everyone.  It is wonderful to have Elizabeth home and it is not just me who is happy.  She has tonight spoken with her father and grandparents.  The grandparents are not in good health and were unable to visit her hundreds of miles away and they are happy she is home.  It was a struggle though when she was deprived the drug Clozapine and we had to ensure long waiting times in hospitals and crowded waiting rooms.  Anyway I have already documented this and what happened.  Despite being deprived of the drug for so long Elizabeth did not relapse and I took her to Harley Street – at this time no one wanted to know and yet look at them now.  This attention is too late!   I have tonight calculated exactly how long she was without the drug when we finally got to see the hospital’s consultant psychiatrist who refused it as did the Pharmacist – The fact of the matter is it was 25 hrs without the drug and NOT 48 yet no one would listen.  When you have been without Clozapine for 48 hrs you have to start all over again.   I went out and bought the other drugs just in case such as Senna and the Bisoprolol .but she has not needed these on top since coming home.    I have also taken a close look at diet and she is having no problems apart from physical problems ie she is often very cold – poor circulation and feels dizzy when walking and her arms are making strange sharp movements when walking.   Tonight Elizabeth has been talking openly about her shocking experience at the Bethlem.    She has described how very ill she was when she was first put on Clozapine.  I know for a fact that an emergency doctor was called out as I went to get shopping and she told me this.  The  team knew she did not want to go on this drug, had signed an Advanced Declarion –  she describes in her own words – not mine that she felt used like a human guinea pig for experimentation purposes. Here is another example of a team not caring to listen to a patient.

 So now at home, she is doing well and is complying with the drug Clozapine and I make sure she has the blood tests.  Up until only recently we have had regular visits by the Home Treatment Team which has meant huge restrictions on Elizabeth’s life.   Elizabeth told a member of the Home Treatment Team that she had enough of their visits yet the team are taking no notice.   The Manager of this team is well aware of all of this as I spoke to her only yesterday I see this as harassment.  After speaking on the phone saying she did not want any more visits the next day  someone turned up at the house despite this,  there have since been yet more phone calls, messages left and today yet another visit from yet another member of the team.  They clearly have no respect at all for a patient’s wishes.  Only yesterday I spoke to the Manager of this team who was insisting on a member of the team coming to visit just to drop round an envelope for the blood test.  I explained again that Elizabeth did not want their visits – they are reporting and some are writing things that are not nice.   I know the importance of having the blood test and the Manager insisted that they needed to check on whether she is taking the drug OK and they can check alright but in any case this would show up on the blood test for instance if she was not taking the drug OK. This is a team who are offering no help but just want to come round to ask intrusive questions and report back.   It is an infringement of my daughter’s human rights to be treated like this by these professionals when she has told them she no longer wants visits.   I would rather have the Police round than a team who ask intrusive questions and so I have invited the Police round at the weekend.   At least they can be witness to the fact that my daughter is OK and doing well just in case it is reported otherwise – the Police can see for themselves how well my daughter is doing.  Elizabeth is not a child but a 27 year old woman and I treat her in a normal way – I place trust upon Elizabeth and know her capabilities and I could not do all what I am doing now without the support of so many good friends. A blood test is due and the Manager told me only yesterday that she would not get the drug if she did not have the blood test.  How come then that she was refused the drug when she had the blood test done in the first instance. The Manager obliged in the end and I collected the envelope from the hospital and she was taken today for the blood test.  I spoke to the Manager of this team and told her that the Home Treatment Team were being intrusive in their questioning –  so perhaps the team can answer – how would they like it if they were questioned………………. “what have you been doing today and what have you been doing yesterday”.  Not just myself but others involved in kindly helping me have noticed that certain members of this team are asking intrusive questions and it was Elizabeth’s decision that she no longer wanted these visits and WHY SHOULD SHE HAVE THEM?   If someone is not on a Section or a CTO then these constant phone calls and messages left and unwanted visits are a nuisance and harassment – I am just sad for my daughter as she has been through so much only to get this kind of treatment.

They make out that they are caring but they are not – they are not taking the blood pressure and not re-titrating. 

 if there is interference in the delivery of the drugs under Section 117 of the MHA 1983 a team has no right to refuse it or interfere with its delivery. 

I see it as harassment not concern as no help is being given.

So this coming Saturday I have invited the Police to come into my home.  All of this is upsetting to Elizabeth and I think it is in breach of her human rights.

I will phone and speak to the Director of Mental Health tomorrow to tell him what is going on. She is an adult at 27 and not sectioned or on a CTO.  They should not be treating someone like my daughter in such a manner.

A friend is going to take Elizabeth to the new gym on Friday.  She has said she wants to go twice a week and that is a good start.   It is Bank Holiday coming up and I am looking forward to this very much.  At the weekend i would like Elizabeth to see the area where I spend most of my time and travel to each day.  Hopefully this will restore her confidence.

In  circumstances where  for example a Home Treatment Team  try to take control of a discharged patients medication without a CTO,  if the former patient does not want them to visit twice a day………… or even at all it is the patient’s choice but this should be respected.  The Mental Health Act 1983 as amended 2007 does not allow for this type of treatment of a patient .  This is a flagrant abuse of Art. 8 ECHR.  Elizabeth should have the legal right to a private and family life.   It was Elizabeth’s choice to come home and she has been with us now over 2 months and everything is going well at home.    We have previously agreed to having visits from the home treatment team twice a day as the Clozapine had to be re-titrated from scratch.  Not once have we seen the slightest sign of psychosis even when deprived of the drug for several days.   This drug has now been put up to the same level  350mg as before and Elizabeth has been complying with this drug which is the main concern of the team.  If they were really concerned they would refer her to a Neurologist.  

Some advice that I respect:  – “do not whatever you do discontinue the drugs without medical supervision even if you believe you are seeing TD.  Minor CNS disturbances are better than a rebound relapse.  It is better to titrate to a dose whereby serum levels are effective in controlling the psychosis with minimum of side effects.”  It is amazing therefore that Elizabeth has had such strength in character  when I could not get the drug anywhere locally I took a taxi to Harley Street with Elizabeth to try and get private care after being kept waiting for hours and hours in the hospital for someone who did not turn up.   Dragging Elizabeth around with me in crowds of people, having to wait for hours and then being told “no”  not once did she show signs of psychosis.  

It has been over two months now since Elizabeth’s return home and we as a family have had no problems whatsoever.  She is getting on well with everyone around her, cooking and doing things herself in the home –  if Elizabeth requests no more visits then that should be respected and I was not even there to influence her.  

Such questioning such as “have you been out today – have you been out yesterday”  –   we all feel is intrusive and no doubt being recorded on their records and not everything being recorded is very nice at all. 

It was last week that Elizabeth told the team no more visits but they have tried to push for these visits wanting to come round and check up when Elizabeth is doing fine.  Even after telling the team this we had a visit from someone who just turned up at the house but Elizabeth was out with her sister although returned just in time so that this person from the Team  could see she was alive and well and very happy and he could then report back.   Then followed my visit on Saturday morning to collect the drugs from the hospital which is a much better arrangement as we do not have to be back at a certain time which was restrictive. I was then asked when they could visit and again I had to repeat myself and say that – “witnessed by a close friend who is acting as one of the carers for Elizabeth she had picked up the house phone herself and had spoken to a member of the Home Treatment Team to say she no longer wanted the visits” –  still the professional from the teamrepeated the question when could they visit!   Then again today a phone message left on the answerphone by someone else in the team so I returned this call – the person concerned wanted to speak to Elizabeth but she did not want to speak to him and when I asked why he said to check up on her – words to this effect and whatever for – she is doing OK.    Elizabeth is 27 and not a child –  if this was a child I could understand but it is absolutely horrible the way someone is treated under the Mental health and I too have experienced the way certain staff talk down to you which can be patronising as well as dismissive. 

Anyway, I would rather have the Police round to my house  so I called them this evening and invited them to come round.  I complained that it is intrusive verging on harassment.   At least the Police could then see that Elizabeth is fine and doing well and record it in their records.  So I am waiting for this appointment and to meet with the Police and Elizabeth.

The very fact that this team have ignored a report by a very experienced psychiatrist and who is internationally respected – I think this is terrible and if it was not for me Elizabeth would not have known about this report or the new diagnosis and new recommended treatment.

A new drug has been offered by one of the consultant psychiatrists when I complained about the onset of TD – an expert in drugs has told me this could be an anti-muscarinic or anti-Parkinsonian drug and that  it would be sensible to titrate the atypical to an effective management dose ie the lowest it will work and it is an absurdity to give higher doses than are necessary and to counteract the side effects with other drugs and I thoroughly agree.   So why was a diabetes drug given that was knowingly contra indicated and staff looked on the ground when I confronted them they could not look me in the eye.  So if this is an Anti Parkinsons drug –  are these effects I am seeing the onset of something far more physically serious and this is where the Team need to spring into action.  I do not want any more drugs for my daughter until she has seen the Neurologist and they should note that MY DAUGHTER NEEDS TO SEE A NEUROLOGIST AND NOT TO HAVE POINTLESS VISITS WHERE NO HELP IS BEING GIVEN. 

Since coming home we have witnessed nothing but NORMAL behaviour.  Elizabeth has the chance of a normal life and her sister wishes to set up a business that Elizabeth could be involved in and together they may go on a course at college soon.  I treat Elizabeth the same as I treat my other daughter and do not treat her like a “patient”.  I encourage her to go out with me at the weekends and even for a walk in the evenings rather than just get in the car and drive.

Thank God Elizabeth has stopped smoking now although I do have a supply of those electronic cigarettes which I think should be provided on the wards.   I am advised that smoking can interfere with the uptake of the drugs and their metabolism.  I am also advised that Agoraphobia can be dealt with by psychotherapy and so I am not too concerned about this.  I have taken Elizabeth out to many places where there are huge crowds and this I believe to be confidence building.

I also understand that the BNF advises that if TD is observed on long term administration the drug should be discontinued on appearance of early signs. Severe stressors and endocrine dysfunction may well be the triggers in psychosis. 

I am currently waiting to hear if Elizabeth has a GP and posted a letter into the surgery where I first turned to for help and I thought she had been registered with them.   I will have to phone again tomorrow to see as it is important Elizabeth has a GP as she will need to be referred to the Neurologist due to the onset of TD.

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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.