“I JUST WANT TO BE LEFT ALONE, MUM”

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.

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