VISIT TO SEE ELIZABETH

One good thing is Elizabeth is much closer to home than before and the journey is easier whereas before it was costing a fortune to have to stay overnight in Wales. I have to say the area does compare to the beauty of Wales however everything is nearby, shops and amenities and bearing in mind Elizabeth will hopefully be prepared to live independently in the community with more support than before perhaps this is not a bad thing. I obviously cannot say where the area is but certainly there are shops nearby within walking distance whereas before there was virtually nothing and Elizabeth was not allowed to even go down to the corner shop. Despite the fact Elizabeth can go where she likes and has “freedom” such as it is – by this I mean she is not on a section, Elizabeth has lost so much confidence and suffers panic attacks and so it will take a while to adjust after being kept so long under Section. It certainly does not do patients any favours being held on a section that drags on and on and on lasting years on end. The longer someone is held in a hospital environment the more difficult for them to be rehabilitated.

Anyway my first impression was that the home itself was not in a fabulous location somewhere where it was quite busy with traffic but once inside it was a peaceful environment – residents are encouraged to do cooking and do their own washing etc. They have animals – a cat and dogs are brought to see the patients by the Psychologist and I think this is a good idea as I noticed that when I got a cat Elizabeth it was very therapeutic and the cat in my opinion was better than all the drugs put together that the team have given Elizabeth. Even at times when Elizabeth was clearly not well during the weekends when I used to have her over on seeing the cat she appeared to improve and it was uplifting for her during difficult times when she suffered so much with the effects of the shocking mind altering drug Quetiapine which by the way Elizabeth was on around 800mg – the maximum and should never ever have been left on this chemical for the length of time she was on leading to adverse reactions to this drug which I reported to the FDA and Astra Zeneca. The type of side effects I read about in the book Prozac Panacea Pandora by Dr Ann Blake Tracy and there was no point in the team trying to say to me that this behaviour was as a result of her so called illness when I had educated myself as to the effects of these chemicals by reading several books by experts who knew what they were talking about.

So I liked what I saw of the care home and the staff were nice. I was even allowed to go to Elizabeth’s room with her sister whereas before there were strict conditions worse than any prison. Elizabeth has a nice room with a good TV on the wall and there are nice facilities there and it is nicely decorated and spotlessly clean. Elizabeth tells me that the other residents are nice too although many are older than her. However despite the nice facilities of this care home I as a mother would not like Elizabeth to be in a care home for the rest of her life and neither would I like it if the team ignored the new diagnosis which I was keen to speak about before leaving. The new diagnosis is PTSD and I have already looked up NICE guidelines and the current treatment does not appear to be correct and not only that I have put my name forward to be on the panel of NICE – with the top level advice that I have received and read about in terms of research that cannot be overlooked by any professional I feel that I could have something to contribute to the NICE panel.

Elizabeth was very pleased to see us and we went to a nice pub where they did good food and after that for a drive and a ride on a local steam train in a peaceful setting. There are lots of nice places to visit in the surrounding area but there is only so much you can do in a day.

Anyway, I obviously did not meet the Consultant Psychiatrist or the Manager. I am hoping to get a call tomorrow from the Consultant Psychiatrist and I have printed off for him some of the interesting research that I have read about. This research should be having the effect of turning around the whole system and I want to share all of this with everyone as it is very important that Elizabeth has the correct care in place. It is not the care home – the area – the people – the staff that I have complaints against. I have complaints against the whole system that does not look into things properly and thinks they can plod on with the same treatment for years and years and years on end and ignore research and advice from leading professionals and some of these professionals do not even know the workings of the drugs such as in the previous hospital where I was told that if I missed a tablet of Metformine it had disastrous consequences and the same with the Clozapine – well I have sought expert advice here and it is very very worrying that professionals have got it all wrong and that I as a mother have had to point out to them what is wrong – the Metformine should not have even been given in the first place and only an Endocrinologist can authorise its use off label so what on earth is going on here. I still have not had my questions answered as if no files were forthcoming from the Bethlem for instance I will find out through the GP as I have ongoing consent and this is very important as my daughter should be referred to an Endocrinologist.

So we all had a nice day today visiting Elizabeth and I am pleased she has a nice room but this is not the place that I want Elizabeth to spend the rest of her life in and the treatment is not the treatment that Elizabeth should be given for the rest of her life as the Clozapine is TOO HIGH A DOSAGE. 100mg is in fact the therapeutic dose so the next thing is it is very important that there are facilities for someone like Elizabeth and I do not mean a horrific acute ward by the way – decent facilities and proper help available if a treatment is wrong then it will need to be corrected and the facilities will need to be provided.

I have seen the effects of the drugs on people long term where they are shaking, where they are suffering from Tardive Dyskinesia and the fact is that I do not want to wait until my daughter suffers from this condition and I want something done about the situation soon. I also want attention to the fact that the drug my daughter is on is one strongly associated with Diabetes and I want everyone to know that when someone develops a serious blood disorder they are IMMEDIATELY taken off the drugs so where is the facility for this and why wait if someone is complaining of shocking symptoms re their physical health. Something should be done SOONER rather than later and I know there is the expertise who know how to take someone off the drugs properly and I would not wish for my daughter to be taking off the drugs in a shocking manner immediately when this should be done slowly and very very gradually and just like Dr Ann Blake Tracy states and I have the CD. Having said all of this I would once again point out that I as a mother would not take my daughter off the drugs myself but it someone suffers shocking ill health and disability as a result of these drugs that the team knowingly continue to give regardless then this is INJURY inflicted on someone and why on earth is the law not protecting the vulnerable patients who are forced to take dangerous drugs for conditions that may not even be correct! Because they have not been properly assessed all along they could have a physical condition and should have been referred to an Endocrinologist. Well I hope this makes everyone question what is going on when physical health is most important and just look what is going on with the A&Es facing closure when people like my daughter are being forced to take dangerous drugs long term and nothing is being done and this will lead to people like my daughter having physical health problems unless something is done and for this you need the correct facility, the expertise with professional involvement who know the drugs inside out – not like some psychiatrists who seem to be only concerned about pushing the next drug – when one does not work they produce another and another and then mix these drugs with others despite the fact they may be contra indicated. There needs to be strict regulations as far as this is concerned in my opinion. There also needs to be proper assessments to determine underlying physical problems that could be mistaken for psychosis and to see if a patient can metabolize the drugs as otherwise the treatment could be harmful.

What is Tardive Dyskinesia?

Tardive dyskinesia is a neurological syndrome caused by the long-term use of neuroleptic drugs. Neuroleptic drugs are generally prescribed for psychiatric disorders, as well as for some gastrointestinal and neurological disorders. Tardive dyskinesia is characterized by repetitive, involuntary, purposeless movements. Features of the disorder may include grimacing, tongue protrusion, lip smacking, puckering and pursing, and rapid eye blinking. Rapid movements of the arms, legs, and trunk may also occur. Involuntary movements of the fingers may be present. Is there any treatment?

Treatment is highly individualized. The first step is generally to stop or minimize the use of the neuroleptic drug, but this can be done only under close supervision of the physician.. However, for patients with a severe underlying condition this may not be a feasible option. Replacing the neuroleptic drug with substitute drugs may help some individuals. The only approved drug treatment for tardive dyskenesia is tetrabenazine, which is usually effective but can have side effects that need to be discussed prior to starting therapy. Other drugs such as benzodiazepines, Clozapine, or botulinum toxin injections also may be tried. (well there is no way on earth I would be happy this this treatment!)

What is the prognosis?
Symptoms of tardive dyskinesia may remain long after discontinuation of neuroleptic drugs. In many cases, the symptoms stop spontaneously, but in some cases they may persist indefinitely.
all the more reason that something needs to be done urgently now.

Anyway I have given the Consultant Psychiatrist some information and I have some questions for him – when Dr Walsh comes over here this is where I shall need a psychiatrist who will work with Dr Walsh and monitor the treatment. Elizabeth will have a full assessment unlike anything on offer under the NHS and then the correct treatment can be given. I am prepared to pay for every test done. I have already had a lot of these tests done and these prove my point – physical health is declining and this is something that I as a mother cannot ignore and need to discuss this with the GP and then the GP can liaise with the consultant psychiatrist.

The other thing is I need to know where are the oils from Dr Tracy and the supplements prescribed by the private psychiatrist? Don’t tell me these have gone missing again. I believe they turned up eventually from the Bethlem but I will check because I am prepared to go and visit in person with the bill. I forgot to ask the care home if these supplements have arrived or not and that goes for the oils from Dr Tracy. When important things like this go missing I need to know where they are.

Anyway if I can get there I will be going to the Maudsley Debates but the subject is CBT and I have other things to discuss rather than CBT. The next Maudsley Debate should be about the following in my opinion:

“More Cooperation between psychiatrists and endocrinologists and a lot less between psychiatrists and drug companies is what is needed.”

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1 comment
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