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.