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.