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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