The weekends are always busy for me. Today there was a meeting with SOAP. I cannot attend all their meetings but today I was able to make it. SOAP helped my daughter move on from a place my daughter in her own words described as “prison” – (documented in my blog ‘Abuse at the Bethlem.’. The group is made up of mainly former patients (survivors) who have had shocking care – some have written about their experiences and some have appeared on You Tube – The group has a lot of members all over the country but meetings take place in London and today it was nice to meet two new members. We talked of experiences we have had with the services and current news and shared information. I then went with a couple of members to further our conversation in a very nice coffee bar before leaving to go home.
I had spoken to Elizabeth earlier in the day. With the long Bank Holiday weekend approaching I hope to have her to stay once again and then there is a family celebration shortly after this but need to see if I can get time off as Elizabeth will need someone there in the house with her. The last visit went very well and was the first time and I think benefitted Elizabeth.
I have posted on Twitter tonight in response of 10 minutes with the GP. I pointed out that my daughter has been given a lifetime of drugging and also I had a lot more to say but my conversation was cut short as it was ‘not fair on the other patients. Anyway at least I got to see the GP which is more than I can say for the Consultant Psychiatrist and I have asked to speak to her. When you point out that the dosage is too high of Clozapine it is wrong that a consultant psychiatrist does not listen. and neither do they listen when a patients complains of serious side effects. If Elizabeth is in bed around 6pm and has to rest in the afternoon it is obvious that the level of this drug is wrong and I have checked on this fact. It should be minimal drugs not maximum and I did not like it one bit when the team gave me Lorazepam for Elizabeth and paracetamol on top. Well I said to them that they should not prescribed these drugs on top as she was on quite enough. I also pointed out how highly addictive Lorazepam is. Elizabeth did not need any of these drugs during her stay with me . The best cure is to lie down I did not have the need to give any further chemicals to my daughter – she is on quite enough in my opinion and the wrong dosage – too high. Something is not right when Elizabeth sat in the garden with a thick coat and jumper on a hot sunny day and her hands were freezing cold. I am now worried for her physical health which seems to be declining but the team do not seem concerned.
TI hope there is better communication between the GP and psychiatrist. I cannot believe how the team previously ignored the fact she was on contra indicated drugs. I have made a point in discussing all of this with the new team as I do not want any more mistakes like this to happen with Elizabeth’s drugs and highly specialised advice needs to be sought if Elizabeth is going to be reduced off this level of Clozapine ie 350mg which is far too high. If NICE have not got this down correctly then I will be phoning them – I need to check on a few things in their guidelines tomorrow. I am glad that Elizabeth reports that staff at this care home are nice to her particularly as I have been reading the most shocking reports about care homes and abuse to children. One of the new members at the SOAP meeting revealed his experience of shocking abuse when he dared to request he took his medication in the evening as opposed to the teams demands and I cannot see anything unreasonable in this myself and he was not aggressive and certainly absolutely no signs of aggression was present in this member at all so what on earth is going on when 6-7 members of staff came in to restrain him and force him to take the drugs there and then. There are some professionals who really seem to like exerting their powers and I have come across much in the way of arrogance myself with staff smiling smugly during meetings. When I look at the blog of MH Cop it makes me laugh when he refers to these wards as a place of safety – it is not a place of safety and several of the patients including my daughter begged to go to prison instead. I can quite understand why as you at least know when your sentence comes to an end – under the MH a sentence can be like a life sentence. Seeing as these patients are weak and vulnerable they are open to abuse but who is protecting them. If you look on the Board of certain Advocates they have psychiatrists so nothing is done fairly.
MH Cop recently highlighted Nearest Relatives and the law however I can confirm that nothing is done in accordance with the law especially when a Tribunal is due to take place and the team wish to delay matters or when a team say they want someone to be on a Section 3 their behaviour amounts to harassment and anyone else would be cautioned for this. it is easy to play on capacity and confidentiality. After a while a patient becomes weakened on these awful drugs and loses strength to stand up to the staff – then if they have a nearest relative who disagrees with what they are doing they try and get rid of that nearest relative instead of working with the family. The excuse in my case was always unfounded in that they accused me of intending to take her off the drugs or encourage her to stop taking them. It would seem that the team care about more about the pushing of mind altering chemicals than the wellbeing of Elizabeth and her physical state of health. How many times have I said I would not take her off the drugs – I am not a doctor and she would need specialist help but if someone is suffering on these drugs where is that specialist help? Coming off the drugs is risky but not impossible if done correctly and properly monitored and in the right environment. No different that coming off illicit drugs yet no fuss is made about this.
Lately I have passed on some very good advice I have received to the team that 100mg is the therapeutic dose for Clozapine.- the easy solution is to just ignore matters. Certainly the care home is not the right environment for any titration to be done that is for sure.
Vast amounts of taxpayers money is being wasted on psychiatric drugs given to patients who are treatment resistant which means they cannot metabolize the drugs yet you read about patients with life threatening physical illnesses who are deprived life saving drugs because of cost. When so much money is being wasted on psychiatric drugs that can be harmful if they do not work I just cannot see the sense in this at all.
Anyway I have had a good day today and just a restful day at home to look forward to tomorrow.
At least now Elizabeth is not being deprived of seeing her family like before.