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Monthly Archives: May 2014

I have spent the entire day trying to sort out about my daughter’s medication one of which is Clozapine and then there is the heart medication and the constipation medication  – she has plenty of the extras such as Lorazepam and paracetamol but has been very relaxed since coming home.  What is so disturbing is that I have got nowhere despite all the out of hours emergency contact numbers and so called out of hours services. 

 

The Out of Hours service is run by NHS England (111) and they have put me through to 3 GPs, none of whom could help me.  They all referred me back to the care home whose manager refuses to give the drug despite having a supply in case he gets into trouble.  They I approached out of hours social services who say there is nothing whatsoever they can do and advised me to contact the Crisis Team which I did.  When I got nowhere with them I was advised to go down to the local hospital and I went to two and both refused to give a small supply of the drugs.  It is despairing when services such as these let you down when you have a vulnerable person who does not want to go back there where she has been confronted by a member of staff yet again and Questioned as to whether she would prefer her father to be the nearest relative.  My daughter feels under pressure and feels upset as social services who are behind all of this want to get rid of me.  I am not imagining things because I have done my best and all along I have listened and respected my daughter’s wishes.  I have been portrayed as a bad mother when in fact I am most concerned when I saw the drugs sheet and there is suddenly much more drugs being prescribed and was told this was given at Cambian but Elizabeth has told me that she has been told that the extra lunch time drugs are  necessary because last time she came back from her stay with me she looked stressed or words to this effect.    So I now do not have a supply of the Clozapine for the evening and early morning and no one cares.  I was prepared to drive 5 hours to collect this from the care home but the manager is afraid he will be in trouble if he releases this and the deputy manager also refuses  and this is the person my daughter has referred to as putting pressure on her.   My daughter is free – as free as she can be – she has a lifetime of drugging ahead as it stands and has been put on last resort Clozapine against her wishes by the Bethlem. The team are ignoring and dismissing a report by a very highly qualified psychiatrist of many years experience. and I do not like this at all.    I have managed to overturn a section 3 and she was sent to the Bethlem Royal Hospital – she was having a bad reaction to the drugs Quetiapine and Olanzapine which they mixed together and this causes adverse reactions and no wonder it is called the Nat Psychosis Unit – right now they are offering £40 to vulnerable patients and promote Clozapine as the favoured drug and they will go to any lengths to get a patient on it including bribery.  Then she was sent to Cambian in Wales where she was discouraged contact with me and I am the nearest relative.  Prior to this I had a day of harassment whilst at work and they were taking me to court accusing me of not giving the drugs – I have all the papers to prove it.   Then a group of Patients named SOAP who have mostly been cruelly treated (we lost a wonderful member not long ago called Jean Cozens} who took her life from being forced into taking drugs by injection to the point she could no longer enjoy life.  The group got behind me and staged a demonstration and my daughter was moved miles away.  The consultant psychiatrist did not like me and members of the team tried their best to distance me from my daughter and recommended a firm of solicitors to her to replace her existing ones and that solicitor did not come near my daughter and whilst she has capacity sometimes when these drugs are given it weakens a patient to the point where they feel they have no choice but to go along with a team.  All the time I was allocated 1 hrs phone contact supervised only my daughter was texting me but if I spoke to her on the phone she actually said she could not speak and I said why not – is anyone behind this and are they trying to sever contact with me and you and she said “yes”  – she said she could not say whom and my younger daughter confirmed who it was.  So I managed to overturn a Section 3 as the nearest relative as my daughter is of no risk to the public and no risk to herself.  My daughter’s first wish was to come home and the above is her words.  Provided she is taking the drugs – I know she cannot come off and I am not qualified.  I am just a mother.  I have been accused by social services of all these things and have the files to prove it.  

 

Elizabeth has told her Dad she does not want to go back because of the pressure she is under by a member of nursing staff.  I had previously written a glowing report for this care home and thought although it was not my choice and although Elizabeth was not given a choice and disallowed the chance to stay at any other placement to see if she liked it –  she did like the care home and I respected that.  What I object to is them giving all the extra drugs – the psychiatrist has not once phoned me to speak to me despite my requests and my concerns.  The GP also has not phoned me and I have been to see her – I have been helpful in supplying information as regards past medical history that they did not have.  I have been concerned Elizabeth had diabetes prior to this but the GP went out of his way to be helpful to me and confirmed that he could see no reason why she was on the drug Metformine which is contra indicated.  As far as I know the private hospital were only giving Metformine and Clozapine.  Now she is on heart medication. drugs for constipation, drugs for anxiety which incidentally she has not needed to take once since coming home.  Lorazepam is highly addictive too and should not be given and the Clozapine is too high I have found out it should be 100mg.    She has been calm and happy since coming home and has her cat here.  I thought the care would be better away from this area as it is London but unfortunately it has not been and I have seen even worse – the care has been more like prison –  prison is better than what my daughter has had being forced to take drugs, being deprived of contact with the family or discouraged and now I cannot believe it the care home are involved in doing the same and all the time social services are behind it in yet another attempt possibly to get rid of me. 

Her father phoned today and was very upset at first with me demanding I take her back but when Elizabeth said she did not want to go back and told him what was going on he understood the position. 

So I have spent an entire day getting nowhere and in the whole of London you cannot get this drug anywhere.  In desperation I contacted a wonderful organisation called the COUNCIL FOR EVIDENCE BASED PSYCHIATRY –  under this organisation are good psychiatrists and I just want my daughter to have a good psychiatrist like the one I appointed for the Tribunal who wrote a wonderful honest report and I respect someone like this because this report was wholly accurate and I have since turned to universities – whose advice you can trust as it is up to date.

 

I have also spent £1000 this weekend on looking at my daughter’s physical health that nobody seems to care about.

Now social services are going to accuse me once again of being an unfit mother and causing my daughter to go without drugs but I have been to two hospitals, I have spoken to three different out of hours doctors through NHS England and I have spoken so many times to out of hours social services.   None of these emergency services could help me and now I have turned to the CEP.  I am thinking about putting out an appeal as to how I can at least get the Clozapine for 1 day – she has not got a supply in the evening and I have the quantities of what she is taking exactly and was told to take this to the hospital and both hospitals refused.  This is London and I have a car and can drive — where in London can I get the drug that has been refused.   If my daughter feels uncomfortable about going back to the care home because a member of staff has put pressure on her then the way I look at it is why should she.  She has rights – she is not sectioned and never should have been – she is not a danger to herself and others and it is wrong of professional staff to say to my daughter that she needs the extra drugs because last time she came back looking stressed and I have heard this kind of thing more than once. 

 

I would like to clarify that despite all of this I am not stressed but naturally disappointed  –  I am disappointed with this Country and I wish I could move forever to Finland where they have such a thing as open dialogue and they treat families in a decent way and patients get better because they are not forced to take drugs and pinned down and restrained by many members of staff to have an injection. 

 

I am saddened that people like Jean Cozens are not around today because of this barbaric treatment and tomorrow  I hope so much that it will be possible for me to be at home as I work in order to sort things out as at the weekend you get nowhere.    If only they knew what damage they are doing but at the end of the day it is right that I stand up to this kind of treatment. 

 

I have heard people say you have to be patient that there will be a slow improvement but it wont happen overnight.  Well I am sorry but this is not good enough   It is not just me but the professionals themselves and I know of some who should be given the highest awards and plenty of funding should be given for the universities concerned who are doing a lot of good work behind the scenes and who are helpful .  This means a lot to me.

If the wards are overflowing and there is a shortage of beds to the point that patients are being put in bed and breakfast accommodation Elizabeth has a home here and has her cat.  I would like minimal direct payments in order that Elizabeth can be integrated into society which would eliminate stigma and there is much fuss about this but in actual fact the main problem is the way patients are treated in general and the families, not all of whom are involved in abuse and yet get accused of this by social services.  At the end of the day Elizabeth is without the drugs for the evening and is very calm and stable and tomorrow I am having to get on to solicitors about this as my daughter is being deprived her medication.  It is pointless getting on the phone to the police to report the missing items amounting to £200 roughly because I know that I will get nowhere.

I want all of this addressed in Parliament because I know that I am not the only one who receives this treatment and you should given support and help not threats of court action and displacement with another family member.  The care of Elizabeth should be paramount.  It may not be an emergency to miss this evening’s drugs however this needs to be sorted out for tomorrow urgently and I think a courier should be sent to collect them from the care home and I would be willing to pay for this.  If I had driven 5 hours or more to collect them the drugs would not have been given to me and that was made very clear.  I think that someone the out of hrs doctor should have been granted the power to demand that the drugs be released but not one of three GPs could do anything. 

 

The whole system is failing and falling apart as when you desperately need help it is not on offer and you have to spend all day – in fact I have spent nearly 2 days trying to sort this problem out and got nowhere.  

The system needs a complete change and immediate change as well and I do not accept that this takes time and is not possible.

     

 

These words have been written to me on a piece of paper today by my daughter who I am fighting for right now.

Elizabeth has told me that it has been recent that she has had a large increase in her drugs and I may give Cambian a ring. It is between Cambian and the care home now as the care home manager has told me they have got their records wrong and that he had no idea that I was in fact the nearest relative which points to all the confusion. I find this very hard to believe myself as it is clearly documented and I have the papers so what is going wrong when there is such a “discrepancy” of information or misunderstand amongst certain members of the team and this information must have been put through to the GP. I was told by the manager of the care home that everything should be communicated through him personally whereas I have gone to the GP with my daughter’s consent. Not once has the consultant psychiatrist telephoned me back and I feel it is as though the manager of the care home is protecting certain people and just passing on messages. If a doctor does not communicate with you and you have the consent of the patient then this is very bad indeed and detrimental to the patient’s health. IN Wales the GP took concern about the 500mg of Metformine and phoned me back and acted professionally but I am not finding this at all where she has placed now by social services.

<So the drugs are running out today tea time and the care home manager is flatly refusing to release them for my daughter and insisting on her return to the care home.  I am willing to do over 4 hrs of driving today to collect the drugs from the care home but they refuse to release them.  Elizabeth has complained to me that a nurse has been "putting pressure" on her.  Behind all of this is yet again a further attempt to displace me as the nearest relative by social services with her father.   The care home manager wishes me to return Elizabeth tonight but at the same times says he does not mind if she does not come back to them however he is not prepared to give the drugs he has in case it comes back on him but what about Elizabeth and I have been referred to him by emergency social services as well as the Crisis Team. Elizabeth has said she does not want to go back to the care home and I am prepared to have her live at home as I am so concerned about the additional drugging but Elizabeth is worried about me being in trouble.  Elizabeth is not on a CTO and she is not sectioned and I am not encouraging or preventing her from taking the drugs as I am prepared to go and collect them today.   She has just come off a section 3 after about 3 yrs and is of no risk to the public or to herself but I know full well she needs the supply of these drugs. I am also most concerned that if she goes back to the care home she will be put under further pressure by members of staff, especially now she has given me the name of the nurse who has been standing in as manager but I did speak to the actual manager who was on a course yesterday who he has overall control I don't think he is medically qualified yet he is refusing the drugs prescribed to Elizabeth. The local GP surgery say I am no longer next of kin – (by this I think they mean nearest relative) they flatly refuse to speak to me and it is a weekend and you cannot get anywhere.  This prompted a call by Elizabeth's solicitor to the care home who managed to find out that behind all this was the local social services team yet again – the same team who have stuck together from the beginning and they have accused me of encouraging Elizabeth to stop taking the drugs and this is why I am unsuitable. That is a lie on their part. I may well not be happy about the drugs given but I know that my daughter has to take them and I am not a doctor so there is nothing I can do however I object to the extra drugs being given and the care home say she was already on them at Cambian but Elizabeth has told me there has only recently been a large increase in her drugs – before coming to the care home she was on 500mg Metformine and 350 of Clozapine. The CQC I spoke to yesterday say they will not get involved other than look at records and yet this leaves the question of all these extra drugs and why the entire team are choosing to ignore a report by an independent doctor appointed for the Tribunal even though there is evidence of PTSD in terms of research and how come a team can just stick together like this ignoring any underlying physical health problem. It is because I have complained that my daughter's physical health is being ignored that the team are ganging up against me and I am not imagining things either.

Anyway today I have made every effort to get the drugs Elizabeth needs. I have phoned 111 and I have spoken to operators who have now three times taken all my details. I have waited patiently for a doctor to phone me back which he did. I explained everything to this doctor – I said the care home manager refuses to give the drugs whilst I am prepared to collect them. He is insistent on Elizabeth going back there but the minute she is back she will be put under pressure by staff I know and questioned. The care home manager accuses Cambian of supplying all these drugs – it is the extra drugs lunch time that I complain of and I had no idea she was on so much. The care home manager states he never received the £200 worth of possessions from Cambian – Cambian say they sent them on. Cambian only were prescribing 500mg Metformine and 350mg Clozapine. Naturally I do not feel my daughter is in safe hands at this care home especially when they also accuse Cambian of not documenting correctly that I am the nearest relative and that her father is mentioned as nearest relative and this points the finger of blame at another hospital. It is one word against the other and the manager is profusely defending his staff. So Elizabeth is thanking me for my help – she has been put under pressure to get rid of me as nearest relative yet again and her solicitor has confirmed talks are taking place and that social services are behind it all once again.

In the meantime I have been on to this 111 number and I did get to speak to a out of hours GP who must have contacted the Home Treatment Team who have since telephoned me to say that they cannot help and neither can the emergency social services out of hours number or the Crisis Team either. So much for emergency help.

I am thinking who can I contact next and I need to get hold of a psychiatrist and of course Elizabeth and in fact any patient now can choose their own psychiatrist and the most reliable and honest psychiatrists are involved with a wonderful organisation called CEP. I am going to put out an appeal and I want a full investigation into all this because as the Nearest Relative that the team hate and want rid of I am the one who cares about my daughter's physical health and I am the one who has spent this weekend £1000 on checking her physical health with private Endocrinologist. No-one else has bothered as all they want to do is to overprescribe and drug my daughter and blame one another.

I will let you know how I get on but I have listened and taken advice and tried and tried to get hold of the Clozapine which is not readily available and yet none of these professionals are helping me. This shows that the whole system needs to be looked at and also the CQC cannot help either so where do you turn to – I would like to ask this question to every single politician and have it addressed in Parliament as this kind of thing is affecting everyone if they cannot get emergency help when they need it.

Since writing the above I have just had a call from another out of ours GP who advised me to go down to the local hospital. The local hospital has had tremendous cutbacks and I have read that the trust is being forced to spend over £1m with private providers and B&Bs instead of front line patient care. It certainly does not make economic sense whatsoever. and a ward councillor has said that the Government should look into this immediately and deliver the promise they made that someone with mental health problems gets the sdame level of care and support as someone with a physical illness. However I as a mother having seen the files question whether all along my daughter has in fact got a physical illness but is saddled with a label the team refuse to part with even though there is NO BIO MARKER FOR SCHIZOPHRENIA. THERE IS NO SUCH THING AS TREATMENT RESISTANT. THE GOVERNMENT SHOULD LOOK AT A NATIONAL METABOLISM PROGRAMME AND GIVE PLENTY OF FUNDING TO THOSE BEHIND THIS AS I HAVE BEEN TRYING UNSUCCESSFULLY TO GET ELIZABETH ON A PROGRAMME FOR THIS TESTING P450 CYTOCHROME AND PATIENTS LIVES ARE BEING PUT AT RISK AND MEDICATIONS PRESCRIBED UNNECESSARILY PUTTING WHEN THEY CANNOT METABOLISE THE DRUGS. Now I as a mother am far from happy and I cannot accept that everything should take years and years on end to put right. When my daughter’s life is at risk and I have proven drugs are being overprescribed then it is right that I should wish for something to be done right now and with all the closures of NHS services this is not unreasonable as money could then be saved for the NHS. Now I have to go down to the local hospital that has suffered closures of A&E and have no idea if they can help me or not and then I have to drive to a neighbouring hospital to see if I can get the drug Clozapine for short supply. I have spent nearly all morning on the phone trying to sort this out. This is far from satisfactory and I wish for this to be addressed as a matter of extreme urgency. When no one can help you I have no choice but to send the link of this to all the top politicians so that they can get together and sort things out.

I was just out driving with Elizabeth when the phone rang and I pulled over to take the call and it was the Manager of the care home who apparently was on a course all day today.  He had been approached by the Emergency Duty Social Worker today and the social worker did as promised and had a word with him.   The Manager of the care home is in complete denial of the fact that a member of his staff approached Elizabeth and suggested she replace myself as mother with her father as the nearest relative.  Elizabeth has complained that pressure has been put upon her and I think this is appalling.   There is no way that Elizabeth would lie about this and has mentioned the name of the nurse hence I feel uncomfortable about her returning to the care home as she could be faced with problems and who knows what goes on behind closed doors.  Prior to all this I was reasonably happy until I saw the drugs charts and there was much more on there than just the Clozapine 350mg.  The Clozapine I realise cannot be stopped  so I have done my best to try and resolve the situation and have spent a good deal of my time today on the phone to social services and the care home/crisis team.  The Crisis Team could not help – they  referred me to the care home and I was prepared to drive down there which would take four hours in total and I would have gone all that way for nothing if the drugs were refused. I told the duty social worker that I wanted assurance that the nurse would release the drugs.  The Manager of the care home would have the powers to do this. However I have just spoken to the manager  and he has flatly refused to release the Clozapine.  He totally denied that a member of his staff had been talking to my daughter about  displacement of myself as nearest relative with her father.  He said he didn’t know I was the nearest relative and that Cambian had recorded that I was not and this conversation was witnessed.  If the files are not read properly or recorded properly then this is a very dangerous situation. Anyway I could not argue with him as he was not going to budge on the subject. The bottom line is that no way would he be giving my daughter the Clozapine she needs for the evening and Monday  morning medication.  This is bad and the crisis team told me they could not get hold of this drug and therefore referred me back to the care home.

All of this shows unreasonable behaviour by the team and not me as I am willing to drive 4 hours to collect the Clozapine but I am not happy about my daughter going back to this home where they have been questioning her in such a way and putting pressure on her and Elizabeth has told the family she is not happy but she is worried for me that I will get into trouble.   The care home manager said that he had no problem  if she did not want to go back there but he did have a problem in releasing the Clozapine.   The solicitors who telephoned the care home said he was not giving out any information/being helpful  – however the solicitors are acting in my daughter’s interests here and eventually he was in contact with social services themselves and had been pointed in the right direction.   I am not asking for a whole large batch of drugs – the essential ones of course are Clozapine and  this is a very unsatisfactory situation.  I cannot think of a mother who would wish to take her son/daughter back to somewhere where you are told on the phone you are not the next of kin and her father is now the next of kin and hearing from my daughter that  a nurse under the home has approached her to ask about replacement of me with her father.  All of this of course was denied by the manager of the care home who tried to make it look like a misunderstanding –  I have weighed up the situation very carefully and it is a very real situation indeed.  I recognised the name of the person I spoke to today from the emergency social services as being someone I had met once before but he did not remember me.  Well I have a good memory and I can even remember what this person looked like and where I met him.  There is no way on earth I have got anything wrong at all.  The pressure on my daughter to go along with suggestions put to her could affect her health and make her stressed out.  I cannot take that risk by returning her on Sunday like I promised but then she is not on a section or CTO – she is complying with the drugs and is not aggressive or risk to herself or others – nothing like this at all.

If I was to take Elizabeth back and leave her there I would feel very uncomfortable as a member of staff has been named by her.  I will do my best tomorrow without help from the Crisis Team or anyone of these emergency staff to ensure that my daughter does receive the drug she has to take on Sunday evening thereafter.

 

 

Today I had hoped to take Elizabeth out somewhere nice but the weather has been so bad.  Elizabeth has been tired today and asleep and has had plenty of rest.  I have been up bright and early as I had shopping to do and I needed to buy some new clothes for Elizabeth as she has put on quite a bit of weight due to the drugs.  She has an enormous appetite like never before.   Anyway after the dramas of yesterday it has been peaceful today and I have had to ring again the emergency social services and they suggested I ring the Crisis Team which I did as I know I will need a further supply of Clozapine.  I also phoned the care home and was told the Manager was on a course and a message had been left for the manager to contact me.  After speaking to the Crisis Team they suggested I phone the care home as they could not help me with the Clozapine.  They suggested the care home send a supply of Clozapine to me but that was refused and I said she needed some for Sunday.  In response the care home told me I had to contact the Manager on Monday – well what good is this!  I then had to ring the emergency social services again and they also referred me to the care home and told me to go down and pick up the drugs.  Well I then said to the duty social worker that I could be driving for 4 hrs or more all the way there for nothing if this nurse who was put in charge refused to release the drugs and then that would be a waste of time so he did in the end after I had pointed this fact out telephone the care home and said he would get back to me once he had heard from the Manager who has to give this consent.  I do not know what I am going to do if I do not get a call back as I am not prepared to drive for miles on end to be told by whoever is in charge that I cannot have the supply of drugs at all.  I need this confirmed first and I have done everything properly and everything as the emergency social services suggested to me.

I am amazed that it is so difficult to get this drug and I know that this is needed for Elizabeth –  she has not needed any extra drugs since staying with me and she has had a relaxing time staying with me.   If I had not received such an approach stating ” were are not speaking to you – you are no longer the next of kin”  I probably would have taken her back.  However I am very pleased that I checked everything out as there seems to be a lot going on behind my back right now.

I would like to see Open Dialogue in the UK as I believe this is the way forward –  it is wrong to use a vulnerable person putting pressure on them in such a way that I as nearest relative will be displaced when I am not refusing the drugs – my complaint is hearing what I heard yesterday and the extra drugs on top of what I thought was the only prescribed drug – Clozapine – in other words I am concerned they are over-medicating my daughter and have already been told that the 350mg of Clozapine is rather high.  It is not doing her any good if she is in bed so early and having to sleep in the afternoons and I don’t see anything therapeutic in this drug whatsoever – however I do not mention this to Elizabeth so there is no excuse for anyone in the team to say that I am encouraging her to stop taking the drugs or putting words in her head.  It is not me who is putting words in her head that is for sure.  I am the one who is concerned about physical health whereas others are not.  I am the one who wanted the Endocrinologist appointment and P450 Cytochrome tests and I hope that by speaking openly and honestly about this something will be done to ensure improvements for everyone.  I have plenty of patience in dealing with this kind of thing – although I wish I had more time but there is expertise in this country and there are good professionals – you only have to look at the CEP (Council for Evidence Based Psychiatry).

 

Yesterday I decided to phone the care home as I have noticed they are giving what seems to be a lot of extra drugs on top of the 350mg of Clozapine which I am told is too high and should be 100mg for a therapeutic dose.  I have already complained about what I see as over-medication and showed my concern for Elizabeth’s well being.  The care home responded that they would be having a meeting to discuss all of this but then I heard nothing and not once have I ever been invited to any of the meetings or the rest of the family come to that.   When I was told by a new member of staff that the drugs were nothing to do with them and were being prescribed by her GP I then telephoned the GP.  “you are no longer the next of kin” I was then told.   I was shocked by their response – all I wanted was the team to have a meeting that included the family to discuss about my daughter being on minimal drugs.   I could not get hold of the Manager and he had not returned my calls hence my last strongly written blog called “communication”.    I think communication is very important and I have found that very lacking with the team as they do not include you.  Well I was not outspoken to begin with –  I have never felt that the drugs were the answer and Elizabeth should never have been put on so many.  These drugs have done nothing for her and my concern is for her physical health well being.  I have not been impressed by the GP’s strict 10 minute only policy.  I did not come across that with the previous GP in Wales –  Elizabeth did not know who her GP was and I was very concerned about the prescription of 500mg of Metformin a day – knowing this was contra indicated to Clozapine and I queried this and Elizabeth was with me at the GP surgery in Wales and gave me permission in front of staff in that I could help –  after all Elizabeth was not allowed out on her own and would not have been able to pick up the phone and dial the GP let alone her solicitor who never came near her and who called my solicitor a “dick head”  –  this solicitor was recommended to my daughter by Cambian who approached her and said “it would be better if you have a local firm as you are in Wales now” – these were the kind of words used and the solicitor never wrote back to my solicitor and this just ended up dragging the procedures of the Tribunal out making it lengthy.  When someone is highly sedated on drugs it weakens them and they do not have the strength to pick up the phone and deal with issues like this – that is why so many end up institutionalised not because they are a risk to the public or risk to themselves but simply because they cannot face having to go through a tribunal or dealing with even phone calls for instance.  It does not help either in the case of some patients who have had their phones taken away and discouragement in contacting their families – ie coercion.

Getting back to the care home –  I saw three packages of drugs marked “morning”  – “lunch time” and “Tea time” – it was the lunch time drugs I was questioning – these drugs were marked for “aggression/agitation”.   Well Elizabeth is not aggressive – she is on Clozapine last resort drug.     Elizabeth does suffer from anxiety but there has been no need to take these extra drugs whilst she has been at home.  Elizabeth has not suffered from anxiety as I have not been pressuring her to go to places where there are crowds, I have not been pressuring Elizabeth at all and she has had no need whatsoever for these extra drugs.  It was the extra drugs I have been complaining about and my worries for her physical health that I have accused the team of not caring about because all they have been doing is continuing the current drugging regime and what is more is that under this care home there would never be any review.  Elizabeth is young compared to most of the people in the care home –  there is 1 other person – male who is around the same age but hardly ever there.  Inside the care home it is spotlessly clean and the staff come across friendly – any inspector would give them full marks for an inspection and of course Elizabeth has been used to towing the line – ie when you are surrounded by staff you end up going along with things.  She has been complying with the drugs and knows this has to and she has not given the staff any problems.    I have also not up until now had any problems with the staff there and have even written a glowing report about them and how pleased I was with the services that was up until now.    Referring to the extra drugs I asked Elizabeth was she given these every day and got the impression they were dished out frequently –  the Manager had previously told me that they were given as and when Elizabeth needed them and of course I am against unnecessary extra drugs but I got the impression they were given more frequently and regularly and I am concerned about this.  For instance Elizabeth mentioned one member of staff there who I do not wish to name on my blog.  This member of staff said words to the effect “these drugs have been prescribed as when you came back last time from home you did not look too good and that the drugs were needed” – ………….words to this effect – this made me think back to Cambian where nursing staff tried to discredit me for missing 1 metformin tablet when it was not just me who had her but the rest of the family and also they commented along the same lines that Elizabeth came back to them looking stressed out.  I think this is go bad –  the truth is that Elizabeth has not need one of the extra drugs.  She has not been denied them by me but has not asked for them.  The truth is that Elizabeth has been no trouble at home, I have not even  had to remind her to take the drugs.  I see Elizabeth has started smoking since going to the care home – in the garden it is very pretty but this is like a smoking area.   Whilst under Cambian she had stopped smoking.    I heard she had been taken swimming – the OT at the care home had taken notice as I mentioned that if they had a swimming group this may be good for Elizabeth and that I would pay for any extras.

Anyway, I had a friend who came to visit me yesterday who has been through a lot – the friend like all of my friends is not someone who would give Elizabeth bad advice – in fact this friend could not have given better advice and how this person stayed away from drink/drugs – did not copy others and looked to keeping healthy and getting on with her life.   It is good for Elizabeth to hear how someone has recovered and getting on with their lives.

The care home have a nice lounge with TV and a communal kitchen – Elizabeth has a nice bedroom there.   The location is urban not countryside so there are shops and good facilities and bus routes nearby however not once has Elizabeth ventured out.  After 3 years in hospital someone can become dependant and completely lose confidence.   The people/residents under the care home seem nice however that is not the issue here.  When the manager does not return your calls, when no one in the team wants to work with you and excludes you, when extra drugs are given despite you bringing to the attention that the level of drugs is too high.  That is where they should be holding a meeting to discuss about doing what they can with Elizabeth’s physical health.    When I phoned the GP surgery they did not want to deal with me – the GP was out.  When I phoned the care home they referred me to the GP and said if it was a complaint about the drugs it was nothing to do with them but I should contact the GP.  Anyway a firm of solicitors telephoned the care home and told me that the manager did not seem helpful and forthcoming with information.  Finally he managed to find out that it was in fact all pointing in the direction yet again of social services.  Apparently instead of holding meetings about my concerns as to the wellbeing of my daughter on all these extra drugs it would appear that discussions are on-going about getting rid of me again as the nearest relative.  All this has been going on behind my back by the local social services team and I am not the only one being bullied by social services.   The team is the same that have been around from virtually the start of Elizabeth’s care.  The reason they do not like me is that I have had good cause to complain.  I have complained about serious incidents not only under hospital care but care in the community and once you complain then they do not like you.   If they had been helpful from the start and done what they could to assist I would have had no complaints but there is no openness or honesty with these people and whilst I was being open and honest with them, social services were being the opposite.

 

Anyway I have sought advice as Elizabeth who wanted to come home in the first instance was denied this by social services.  Social services pointed at the fact they did not want her to come home but they have no grounds to accuse me –  members of the team have tried to accuse me in the past of encouraging Elizabeth/influencing her to stop taking the drugs and this is untrue.  It was always Elizabeth who had complained of the side effects who wanted to come off them but I am not qualified to do things properly and nothing has been done properly as regards a withdrawal before resulting in failure and then Elizabeth has been told that she has to take the drugs for the rest of her life. 

 

I have been challenging the diagnosis and this is another reason the team do not like me.  The social services have dismissed a full report by the independent doctor and trivualised the contents therein.  Elizabeth had been denied sight of this report which recommends a very different treatment to what she is getting – intensive trauma therapy”  and it does not recommend Clozapine and this drug is not recommended for PTSD as I have looked up NICE Guidelines so again I have had cause to complain as they have not only excluded myself but they have treated Elizabeth like she is nothing by not being honest and open and giving her a copy of the report with new diagnosis.  All of this led me to seek further Professional advice at top expert level and from people who know better than most GPs and psychiatrists as to how these drugs work – how to safely withdraw someone and this has led me to question the knowledge of the medical profession in general when no one had heard of P450 Cytrochome tests and I then tried to find out where could I get such tests done as it is so important – if my daughter cannot metabolize the drugs then she should not be on them as this could be harming her physical health.  I believe these important tests should be readily available and I know of a university where there is a programme of these tests going on so I tried to get Elizabeth on this programme but the Professor concerned is out of the country.    The GP had not heard of such tests and the consultant psychiatrist does not want to speak to me so this is not a good situation where you have to pass messages through the care home manager  to the consultant psychiatrist and then the care home manager has written to say that I should communicate directly with him however I am now thinking that in all this time there must have been meetings going on, perhaps the centre of the meeting is their discussion on how to replace me yet again with her father.   I have accused social services of causing a rift in the family, putting my younger daughter in a position between myself and her father who lives a distance away and is working full time as I am now.  Anyway I wish to share the following about Nearest Relatives: 

“Husbands and wives are equally on the hierarchy of NR’s where offspring are concerned, both in the highest category (a) of section 26 MHA 1983.  Notwithstanding the general rule that persons higher up the list take precedence (not applicable here) where a patient ordinarily resides with, or is cared for by a relative before admission to hospital that relative is the nearest relative of the patient.  The legal authority is Re D (Mental patient: habeas corpus) (2000) 2 FLR 848.  He therefore can only be NR if he is involved in direct care and if he was so at the time of her admission.  They will of course try to invoke the test of unreasonableness on your part.  If your ex-husband is ‘appointed’ by the treatment team by operation of S26 MHA you can object on the grounds that he is not in the best position to act on your daughter’s behalf.”

This is all a terrible waste of public money – to apply to court, to have to allocate more solicitors – what a waste of public funds.  If I as a mother was going to take her off the drugs and do this myself fair enough but that is not the case I am not qualified and know Elizabeth cannot just come off them.   Whilst I thought a country environment – farm with animals was a better environment but Elizabeth  has not been sent there and I thought a therapeutic community would be more natural.

I am now looking at the local paper and on the front page is featured “Mental Health Patients Being Placed in B&Bs.”  – one of the reasons I thought it would be better for Elizabeth to get away from the local area was because the care had failed and serious incidents had occurred however to my disappointment I discovered there was even more shocking care elsewhere but I will now feature some of this article about the local area:

 

“Hundreds of patients being discharged into bed and breakfast accommodation to free up mental health services each year as a result of toxic combination of spending cuts and increasing demand.  There is a figure of £264,000 on discharging patients into B&Bs for 36 days on average spent over 2012/13.   The trust has spent 11 times more on placing patients with private providers compared to 2 years ago.  The budget increased from £89,000 in 2012 to just under £1,000,000 during the first ten months of 2013/14 with an average between £440 and £530 a night spent on securing a single bed usually with private health firms The Priory or Cygnet.  So now the massive increase in use of external beds has resulted in the Trust having to cut the number of inpatient services by a third over the past 5 years whilst demand has increased.  One councillor who I do not wish to name in this blog states that he is disappointed to see the trust being forced to spend over £1m with private providers who are making a profit from the NHS.  He quite rightly goes on to say that the money should go into front line patient care and that it doesn’t make economic sense.  He urges the Government to immediately look into the funding and deliver the promise they made that someone with mental health problems gets the same level of care and support as someone with a physical illness (HOWEVER I WOULD GO ONE STEP FURTHER THAN THIS – PERHAPS THE MH PATIENT HAS A PHYSICAL ILLNESS THAT HAS NEVER BEEN FULLY INVESTIGATED AND PERHAPS THEY SHOULD HAVE BEEN REFERRED TO AN ENDOCRINOLIGST AND HAD THE LATEST TESTS DONE AND MOST ACCURATE ONES WHICH UNFORTUNATELY I DISCOVERED ARE NOT AVAILABLE IN THE UK AND AM FINDING OUT ABOUT THIS).

 

In their defense the Trust said B&Bs were only used for patients who had been clinically assessed as ready for discharge –  however I would point out there were times that Elizabeth was discharged and she was in no way well enough to be discharged and just dumped into her scheme into the community without any extra support.

The spokesman said that significant pressures on services recently has been seen – no wonder why if the care is all about enforced drugging without looking at someone’s physical care – no wonder why the care in general is not working for everyone when patients are not given consideration and are told they face a lifetime of drugging –  this is abuse in my opinion and allowed by law to go on in a so called civilised country.   The try and say they attempt to locate a bed with another NHS provider firstly before looking at the independent sector and that B&Bs were only temporary.  Well the CQC have given them a warning when they found seclusion rooms being used as bedroom but the mental health trust now says that this is no longer being done. 

 

Well before all this became headline local news I could see the scenario of revolving door with Elizabeth being admitted time and time again and seeing the same faces back on the wards. 

On a ward the main care is drugs and with money being wasted not just on this but drugs to patients who may not even be able to metabolize them as there is no national testing programme in the UK – this denies lifesaving drugs to those who do need them for physical conditions as they are too expensive.  Money is being wasted on pushing drugs to my daughter and Clozapine is not a cheap drug and could lead to long term serious health problems if she is left on them for the rest of her life like the team see fit.  Plus all the extra drugs being given to Elizabeth right now on top –  what is this all doing to her physical health when she was a trauma victim.  As with many people under the MH they are victims of trauma and the drugs do not work for everyone but there is no choice and staff can be brutal by forcing a patient to have an injection rather than take the drugs.  One of the members of SOAP group Jean Cozens is a shining example here of someone who due to enforced drugging and level of drugs to the point she could no longer enjoy life ending with her taking her own life –  members of the group recently attended the Inquest.  So giving drugs to a treatment resistant patient is a waste of money and also much money is being wasted by social services by taking people like me to court and displacing nearest relatives.  Just think about it the solicitors are appointed by the council – the patient has a solicitor and the nearest relative has a solicitor and things can drag on and on and on depending on whether a patient is supported properly by his/her solicitor – a good solicitor would make a point of visiting the patient and instead of waiting for someone to telephone them especially when someone is vulnerable like Elizabeth.

 

Anyway to think this is going on for a third time whilst the team desperately try and replace me again when they could point the finger at me accusing me of being a danger to the patient – however by the way Elizabeth is not on a section any more – she is also not on a CTO so therefore she is free to do as she wants.  Her first wish was to come home but social services said no to this however they did not seem to mind her going to her fathers home – they cannot deny her leave as there is no grounds to do this.  I am not a risk to Elizabeth –  she does not return to them in a stressed out state – I would accuse the team of once again sticking together using tactics that amount to coercion.  When things are in such a mess locally the team should be looking at ways in which to save money not waste money.    Now they are all in discussions so I heard – these discussions are no doubt centred on myself rather than concerns to do with.

 

Anyway,  at the end of the day I finally got a call from the manager of the care home but did not realise he had left a message.  I have not spoken to him yet but spent over an hour trying to get through to emergency social services.   I have to praise the person who took the call and how she dealt with me –  I wanted to speak to someone there as Elizabeth has expressed her desire to come home.  It is no good if a team are questioning Elizabeth to choose between mother and father who by the way are on good terms and cause trouble in the family – this is what has been going on since the Bethlem and Cambian and now the care home – unbelievable!  What a nurse should be asking a patient is “how are you” – “are you OK” “is there any problems with the drugs”  “is there any problems in general”  – instead the nurse is asking Elizabeth if she would prefer her father to be the nearest relative which puts pressure on her and causes upset –  if this is what this team are doing then it is not doing her physical health any good to go back there and if it is Elizabeth’s wish to come home and she is of no risk to herself and others then this should not be a problem and would save money to the local council who are wasting a fortune by the looks of this front page article.

 

Yesterday I contacted the CQC  – they virtually told me there was nothing they could do apart from look at the records to see if they were being kept OK –  well what good is this!  there is far more to looking at the records and the CQC also do not investigate individual complaints even if they are serious and even if you point out there is more than one patient complaining of human rights.  Still the CQC do nothing whatsoever.

I was then advised to complain about social services by the CQC as though this was mainly their responsibility when I am in fact complaining of the extra drugging in the main.    So I was not impressed by this but not surprised at all.

I then wasted an hour trying to get through to the emergency social services to tell them what had happened and that I was most concerned as to what was going on and Elizabeth’s well being not only that she expressed her desire to be at home again.  Well I could not get through to them.  I will try again today. 

Now suddenly this care home manager has left me a message and I have not got back to him as yet.    There is suddenly a new person working there who told me to complain to social services – for all I know he could be part of social services keeping an eye on things but I am just assuming –  I responded that I was not on good terms with social services that they had tried twice to replace me as the nearest relative and that I had nothing to say to this team –  they should be the ones to get in touch with me and communicate but do not bother.  Even if you do not like someone you are paid out of public funds to communicate –  one of the reasons I so wanted to go into the Police Force was to communicate and work with those with mental health conditions as I was shocked at how I saw them being treated by professionals and I am not saying that all professionals are bad.

 

So now I have quite a dilemma –  I know that if I do not return Elizabeth to the care home social services will spring into action and I will get court papers sent to me by email like last in front of all my work colleagues.  On the other hand now that Elizabeth has mentioned a name of a member of staff who I would accuse of coercion I would be concerned for Elizabeth’s wellbeing if she was returned to the care home even if this manager gave me all the assurances in the world. 

There is also the issue of the drugs which will have run out by Sunday – the day I am supposed to take Elizabeth back. 

I would like to share this with everyone to show what is going on in reality behind the scenes and this is money being wasted  simply because the team do not like me.   People may think well she has herself to blame by her blog for instance I have been accused “she is not helping herself”  – there you can see that these words were said not to me but to my daughter.  “do you really want your mother to be the nearest relative” said the consultant psychiatrist at Cambian who left by the way and I found out that this consultant psychiatrist is also a GP so someone told me.   I did not have a blog in the first instance and this has come about as a result of my despair by what I have seen.  I find I am not alone in this despair and my reason for making this so open and honest is because I feel this is the way forward.  Forget anti-stigma campaigns if things were brought out in the open then there would be no stigma – it is secrecy and sensational press reporting and ignorance that cause stigma.  Anyway these campaigns are not doing anything to ease the overwhelming failure of the care system for MH patients and inhumane treatment of patient allowed to go on under the law.  These are human beings at the end of the day and can respond if they are treated well in a positive manner.  I am impressed by the intelligence of the former patients I meet up with and like I say many have been abuse victims themselves and getting back to the Metabolism Programme – if these tests were on offer then it could be the best solution of all as if this is ignored and patients continually drugged concomitantly with say contra indicated drugs for instance not only will their physical health decline but the adverse reactions in terms of behaviour could be the very cause of interactions from drugs that a patient is routinely given and kept on – that is why the system is not working and much money could be saved to the NHS rather than wasted on drugs that do not work for a MH patient who is ignored by the team as Elizabeth is. 

 

Well I am not criticising all consultant psychiatrists as there are good ones to be found on the website of CEP (Council for Evidence Based Psychiatry)  Also there was one good social worker at the Bethlem Royal Hospital and the social workers for my father who had Alzheimers were brilliant so as you can see I have come across good members of staff plus the junior nursing staff at the Bethlem and a couple of nurses who escorted Elizabeth to visit me before Xmas when the consultant psychiatrist denied leave over the Xmas period to the entire family. 

Anyway I will make a further attempt to contact social services emergency out of hours today and the care home unless the out of hours social services themselves wish to contact them. I would otherwise have taken Elizabeth back on the Sunday but now the situation has changed when I feel that this culd cause her stress and health problems if she is being questioned by her nurse about replacement of me as Nearest Relative yet again and that the risk is too great for Elizabeth – what is more, she expressed her wish to come in front of friends but was also very worried that there could be trouble for me and a vulnerable patient like Elizabeth should not be put under such pressure by a team who simply want to get rid of the nearest relative when there is no reason for this – I am the only one who is caring for her physical health by the looks of it whilst the team are pursuing their wishes to see me displaced with her father. I would conclude that this is a very nasty situation by people who are meant to help and assist not drag parents to court when there is no risk. It is a good thing that I am bringing this out in the open as I know of others affected.

 

 

 

  

 

 

 

 

I seem to be having more luck with communication via social networking than with the team these days.

I am still waiting for a phone call from the Consultant Psychiatrist and the GP. I may have to ring again. The care home were meant to pass on my messages and the last I heard they were having a meeting. Well I have not yet received my invitation and that was some time ago now. Communication works both ways and I have always been open and honest with the team giving them information but this has not been reciprocated. This is why I am in favour of Open Dialogue because when you are excluded and not kept informed then not only is this not very nice but not beneficial to the patient.

Anyway I have phoned the care home twice to ask their permission out of politeness that Elizabeth comes home this weekend. I was not able to have her over the Bank Holiday. I am waiting to hear if that is acceptable even though Elizabeth is not on a Section any more I would never just not bother to inform anyone in the team as the drugs need to be made available – until her treatment is revised there is no way that anyone in the family would try and intervene in a change in treatment as when it comes to the drugs I am not an expert and this would need specialist help. However, I question the expertise of some of the immediate professionals when they just plod on and continue when I have presented them with facts from someone who is a top expert. There was barely any time to discuss anything with the GP as only 10 minutes was allocated and I had never come across such a ruling before. I have sent on to the GP some very important medical records that they did not appear to even have.

Now there is the mystery of where the oils and the supplements disappeared to. How can a big box of supplements disappear into thin air. If these are not found I shall be issuing a bill and am waiting for Cambian to ring. It is no good them saying that they were sent on – where are they then? I may be a long way from Wales but Head Office is on my doorstep. The care home say they have not received the supplements so this is now down to Cambian and if Cambian have not got them then the question is did they actually get sent on from the Bethlem however I do know that the oils did. Aromatherapy oils that according to Eliabeth worked better than any single drug and they have disappeared into thin air! I am quite prepared to drive to all three locations. The private psychiatrist prescribed zinc, fish oils, B12, Niacin and vitamin C. Well I have found plenty of the B12 which I must ask the consultant psychiatrist to include but now they have asked me to supply the fish oils and I am not happy as they have gone missing – why should I have to supply these after so many things have gone missing costing hundreds.

Anyway, enough of this I am extremely happy with some new connections I made through my website and I spoke to one of these last night and I have purchased her book “Wonderfully Strange” this is by Becky Shaw by the way and what a remarkable person she is. I felt honoured that someone had contacted me who could really identify with my daughter’s case and see things from my point of view through again experience of her own family. I felt inspired by listening to her account of recovery and I have no doubt so would Elizabeth. This is someone who I believe could really help my daughter – someone who has gone through so much and come out on top. I can only hope that will be Elizabeth one day. I hope to meet up with Becky Shaw soon if she comes to London. Also via Twitter – I was contacted by a group called “Heal the Regulators” – apparently they are going to the BBC -not sure yet if I can get time off for this but I know lots of people who would like to speak to the BBC besides myself.

Another contact I made via my website has told me of the shocking fact of her son being offer £40 for trials at the Bethlem. I am not against clinical trials taking place but they should not be on offer to the most vulnerable patients – ie my daughter did not even know she was on Metformine or Clozapine and it is all well and good the team saying she agreed – how can they explain this – she signed an Advanced Declaration before going in to that Research Hospital against going on Clozapine and so they are in breach of human rights as far as I am concerned. These clinical trials should be advertised and I am sure they would be paying more than just £40 if they did this properly.

Also they have been offering unlicensed drugs – the Metformin was given off label for weight loss for example.

The spray someone else I know was given is also off label – this is the spray below and details of it:

Researchers Launch Study with Oxytocin Nasal Spray
A large clinical trial will test the safety and effectiveness of oxytocin nasal spray to improve sociability and communication in children and teens with autism. The federally funded clinical trial follows the promising results of a pilot study funded by Autism Speaks. The researchers hope to recruit 300 participants, ages 3 to 17, at centers in Boston, New York, Seattle, Nashville and North Carolina.

A naturally occurring hormone, oxytocin plays a critical role in sociability and affiliation. In the Autism Speaks-funded pilot study, researchers administered oxytocin or saline nasal spray to 25 children and teens twice a day for 2 months. The children who received oxytocin showed greater improvement in social behaviors compared to those who received the inactive nasal spray. Based in part on these promising results, the National Institutes of Health (NIH) awarded $12.6 million to fund a national clinical trial.

The hormone oxytocin plays a crucial role in social bonding.

“The Autism Speaks-funded pilot study was critical in getting the larger grant to test this treatment,” says lead researcher Linmarie Sikich, M.D., of the University of North Carolina, Chapel Hill. “We want to extend our great appreciation to Autism Speaks, the families and children who participated in the pilot study and the National Institute of Child Health and Human Development, which is supporting the larger trial.”

The study is called SOARS-B, for the Study of Oxytocin in Autism to improve Reciprocal Social Behaviors. During the first six months of the study, half of the participants will receive the oxytocin spray. The other half will receive the saline spray, for comparison. Neither researchers nor participants will know who receives which. During a second six-month period, all participants will receive the oxytocin spray.

The researchers will measure improvements in social skills and communication. They will also use blood samples to conduct gene-based tests. In this way, they hope to track whether and how the treatment alters gene activity associated with sociability.

“This exemplifies translational science,” says Autism Speaks Chief Science Officer Geri Dawson, Ph.D. “Autism Speaks funding of basic science on oxytocin and a pilot clinical trial with children provided the leverage needed to fund a gold-standard national trial. We’re tremendously grateful to our donors for making this possible.”

The researchers expect to start enrolling subjects in early 2013. Participating centers include:

* The University of North Carolina ASPIRE program, in Chapel Hill and Durham
* The Lurie Center for Autism, Massachusetts General Hospital, Boston
* Seaver Autism Center, Mount Sinai School of Medicine, New York
* Seattle Children’s Research Institute
* The Vanderbilt Treatment and Research Institute for Autism Spectrum Disorders, Nashville

For more information, visit the SOARS website. Please also see Autism Speak Participants Guide to Autism Drug Research.

Funding of the SOARS study is part of $100 million in federal grants awarded to nine Autism Centers of Excellence earlier this month. Many of these major research projects grew out of pilot studies funded by Autism Speaks. Please see our related news story here.

Autism Speaks is currently funding a number of studies on oxytocin. You can explore these and other donor-funded research projects using this website’s Grant Search.

Reported by Autism Speaks science writer Laurie Tarkan

These trials should not be given to patients who are extremely vulnerable as in the case of my daughter and others at the Bethlem. Neither should the drugs be enormous in order to challenge someone’s physical health to the extreme as in cases I know. What is going on when vulnerable patients are being used as human guinea pigs.

Anyway, Elizabeth will hopefully be down this weekend and may wish to write herself like last time. If the weather is good I will be taking her to the coast for the day – I have Friday off and then the weekend and will drive her back Sunday.

As I have discovered I receive more communication through social media that through all the teams put together but the biggest worry is when there is no communication between the psychiatrist and the GP – when medicine is overprescribed like the Metformin that I got taken off 500mg a day off label – this was given by the Bethlem and should not have been.

I am also hoping that the Professor who is the Country’s leading Expert in Cytochrome P450 Metabolism will soon come back to the UK as I would like Elizabeth to see him and be analysed as she is treatment resistant and if someone is treatment resistant what are they doing giving the drugs and why are the team dismissing PTSD and the report I have – there is a wall of silence about this and underneath all of this could well be underlying physical health problems not ever investigated by any team as they have been too busy coming up with new diagnoses and more and more different drugs to experiment with than think about the physical health of Elizabeth.

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