I have just finished housework chores and hung washing out in the garden. Fluffy the cat is underneath one of the new garden chairs trying to keep cool but Elizabeth is in bed. After taking the highly sedatory drug Clozapine she has to lie down and is in no fit state to do anything much. I now need to go out shopping as I want to do a BBQ and I am waiting for her to come with me. Thank goodness I have my car back from the garage but at a cost – a BMW should be reliable and nothing should go wrong with this make in my opinion. It has been most inconvenient not having my car and last weekend I had to go out shopping alone and get a cab as Elizabeth refused to come. Elizabeth is covered with quilt but she says she is not hot. I do not know how she can stand to have this quilt on her on such a hot sunny day but Elizabeth has complained of feeling cold and has sat in the garden with a thick jumper on before.
My younger daughter is out working – a lot of her work is at weekends. She at home during the week rather than weekends which means I see little of her.
This morning I booked tickets for what I thought was an event taking place this weekend but when I looked at it again Big Feastival is end of August however I really want to go to this. I have now booked tickets but they have run out of the VIP tickets and the only good thing re this was that at Taste of London they had nice peaceful marquees to retreat to. I really wish that Elizabeth could meet Jamie Oliver and I have asked if there are any special tickets I could buy for this and the reason I would like her to meet him is that once she had applied to his organisation for work – it was once this line of career she so wanted to go into but Elizabeth was not well enough and that is when I found out about the anti-depressant drug. I did not understand at the time that the dangerous Cipralex could have been behind the change of character we so rapidly saw and change of appearance from someone immaculate to someone unrecognisable (she suffered from mood swings ranging from suicidal thoughts to aggression and skin problems on this chemical) but there were other factors too which I cannot mention. As a mother I did not think that this drug could be behind everything we witnessed and trusted these doctors and I never thought that this drug could lead to initial hospitalization and a string of different labels and over 14 mind altering drugs – a revolving door syndrome of hospitalization and desperation. I thought counselling would be on offer but was shocked at hearing that Elizabeth would “have to take the drugs for the rest of her life” I am in touch with former patients who have also suffered so much at the hands of professionals who similarly believe that drugging is for life and with total disregard for physical health. How wrong they are as I have met patients who are now not drug dependant but they have struggled without proper backing and support in many cases.
Anyway I spoke to yet another consultant psychiatrist (now three of them) in the course of the week so there is a Dr A, a Doctor M and now a Doctor W involved in the care and Doctor W telephoned to inform me that Elizabeth was meant to have a blood test and I did not know because every week I have to arrange someone to be there with Elizabeth whilst I work. I did not know about this test so I frantically had to contact the two people involved in the care for that day to ask them if they could possibly take her to the hospital so that this test could be done. I had to go out of the open plan office where I work and make a phone call on my mobile to arrange this. Anyway that is all out of the way now but whilst speaking to the consultant psychiatrist I told her about the symptoms I had noticed whilst out walking with Elizabeth. I could not believe it when the consultant psychiatrist said there was another drug for this. I immediately turned around and said she was already on too high a dosage and I have had to turn to top professionals to get advice – up to date advice only to discover that 100mg is the therapeutic dose not 350mg – Also there was no way any other drugs should be given as they may do more harm than good bearing in mind she is treatment resistant. I could also not believe it when the consultant psychiatrist said that as she was doing well at home this was a sign the drug was working. OH NO IT IS NOT. The fact is Elizabeth is very happy to be at home having experienced the most shocking wards and to think I thought there would be better care elsewhere as at the time there were other factors why she needed to get away which I cannot discuss here. I have since discovered two areas in the UK where the care could be good (thanks to universities providing top0 class training of professionals) but if I was to leave the UK and go abroad the best area of all is of course Tornio in Finland where they have open dialogue – I hope to visit Finland in the future with Elizabeth to see for myself what wonderful care is on offer.
Some of the mothers that I know are going to the Mental Health Capacity Consultations coming up and I wish I could come but it will be impossible for me to get time off from work then however I have written exactly what I think on the website of the Dept of Health. Also I intend to personally write to HRH Prince Charles to congratulate him on his views on homeopathic medicine and I quite agree with him and Dr Walsh – I hope Mr Burstow has read the book I gave him but he has not agreed to give a room in Parliament for all the mothers to come and see him and discuss the way forward. Unfortunately I cannot see any improvements as there is NO CHOICE and system that endorses enforced drugging for MH patients and when I recently turned up at the foyer of the MH Unit locally to try and obtain the drugs being denied to Elizabeth I was shocked to see many of the same faces still on the wards and many came up and spoke to Elizabeth. All the more reason for there to be choice and there is no way on earth I would wish to see Elizabeth back on any local wards.
It would be my dream to meet Jamie Oliver himself at Alex’s Farm to discuss what I wish could be his new project and that is to tackle healthy eating under MH care alongside Dr William Walsh and to look at the effects of the mind altering drugs in terms of nutrition. I would like to tell him about Chy Sawel and some of the wonderful advice and knowledge I have recently gained. There could be many patients who will get better within a specialist centre which could lead to others being set up so that those who constantly end up on the acute wards can be properly examined not only to see if they have underlying physical health problems but also to look very closely at diet and nutrition as many of these patients are dumped into the community and left to fend for themselves without proper help and backing so there needs to be better facilities available and nutritional care being made available for those who are too ill to cook and prepare food themselves yet are going downhill because of neglect and these drugs can cause someone to have no energy, be incapable to think straight etc. It is vital that such patients are given a service providing proper nutritional care and possibly meals provided to them. When Elizabeth was in the scheme in the community many times there was nothing in the fridge and she had ordered junk food. Now at home I throw away all the leaflets that come through the door and think of nutrition all the time and do not buy unhealthy food. Elizabeth really enjoyed going to Taste of London but this will be wonderful as there is so entertainment as well and it will inspiring for her to attend.
As for this weekend I am waiting for Elizabeth to wake up so we can go out as I have things to do this morning however she is more than capable of managing on her own as I have seen – the biggest help needed is someone to take her out and I was going to take her to the local gym which is within walking distance and to have her hair done which is now practically back to its natural colour and maybe I can pay for a personal trainer to come round and collect Elizabeth during the week and take her to the local gym as well as young people who can go out with her places. She does not want to go out every single day but I would like there to be something in place and it has been two months and my own friends have been wonderful in taking her out places but as there is nothing provided I will have to provide it myself and discuss with Elizabeth what she would like.
In relation to the extra drugs the consultant psychiatrist wishes to give for the onset of tardive dyskinesia well before any more drugs are dished out a specialist such as a neurologist should be consulted and also I am now able to keep a watch on what is going on after the shocking discover that Elizabeth was on CONTRA INDICATED drugs. Contra indicated drugs were METFORMINE AND CLOZPINE and I have looked into matters further to see that only an Endocrinologist can prescribe this drug off label. It was immediately taken off when I complained. This is why it is a good thing Elizabeth is home now especially since there are three consultant psychiatrists involved.
Finally I have still not heard from Cambian – I am losing my patience now and will have to personally go down to the Head Office to see the Chief Executive. I am going to write for an appointment as I never heard the outcome of my initial complaint. My complaint is that the oils and supplements are still missing and now that Elizabeth’s possessions have come back from the care home I have looked for these items. They are nowhere to be seen. Now it is between Cambian and the care
home and the cost should be refunded to Elizabeth whoever has lost them and I intend to find out.