BACK FROM WALES

I have just returned the car to Enterprise Car Hire after my stay in Wales and then I hope to go to BMW garage to see what is wrong with my car. Everything worked out well in the end and the journey was good boh there and back. The farm I stay at with my daughter Elizabeth is superb but Elizabeth was too ill to go into the local Asda Store and looked as though she was having a panic attack before we were due to leave. I wanted to get her some clothes as everything she brought with her did not fit and was too tight or too small. She had a voucher left over from Xmas so Elizabeth is petrified of heights and even the escalator leading to the top of the store where the clothes are kept. I went in alone and a friend stayed with Elizabeth in the car. I bought some longer length jumpers and trousers which fit her – a size 16 as before she was a size 10. I cooked dinner in the cottage which felt more like home than my own house. The views surrounding the cottage looked beautiful and I could not help thinking if only I lived in a place like that rather than in London. I felt the environment was the right place for Elizabeth to get better. I remembered a fantastic Indian restaurant nearby and drove there but because Elizabeth does not feel comfortable eating out in restaurants or anywhere where there are crowds, I got a takeaway. Elizabeth goes to bed early – she goes to bed around 7.00 pm. The drugs make her very tired and after she has just taken them they make her feel dizzy and disorientated. I bought some DVDs to watch – it was not nice weather and so we could not go out anywhere. People go for walking holidays where we stayed and I remembered back to when Elizabeth liked sport and walking – not only that she was a very good runner and advised me on technique when it came to speed and she also took part in a sponsored run for which I have certificate. Elizabeth does not have the energy to do what she once used to. She does not have the strength to pick up a phone and call someone – this is where it is all very unfair when someone like my daughter should have legal support and backing and regular contact from solicitors but her solicitors were changed to a Welsh firm by the team and when I asked my daughter if she ever saw a solicitor – she said no. She said no one (up until very recently) told her of an important decision. She said no one to this date has told her of her new diagnosis or given her a copy of the report by the consultant psychiatrist I appointed stating a different diagnosis and treatment. Well it is a good job that I am the Nearest Relative as I wish to make sure that my daughter is treated fairly. I do not think my daughter has been treated fairly and that is because no one cares about her physical health. Certain behaviour of various professionals have not been ethical in my opinion – I cannot even print what a certain solicitor has called my legal representative – d… h… I will leave this to your imagination. Then of course the displacement of me as the Nearest Relative. These attempts have happened twice now and apparently I am advised that this is extremely commonplace. It is done by trying to sever contact and distance the person under care to the mother or whoever is the nearest relative and then someone from the team says “do you really want your mother to be the nearest relative?” – it is also done by making that person feel embarrassed and ashamed if they do not go along with what is expected of them. No team should try and influence a person who is vulnerable or under their care in such a way. There is a reason this is done and that is when there is something to hide.

Well, when I went to see Elizabeth I needed to know the name and address of her GP. I had no idea the GP had been changed but this had all been carried out by the team. So with the Job Centre checking up on my daughter the first person I turn to was the GP. Of course you are up against a barrier the minute you try and discuss anything. Unlike in Finland there is nothing like a humane system here in the UK – in Finland they have decent care with 95% success rate although that is in a small area of Finland called Tornio. How I would love to go and see this care for myself. So, Elizabeth did not even know the name of her GP so I found out who the GP was and took Elizabeth along there whilst I visited. What is going on! My daughter does not know about the new diagnosis let alone the name of her GP. Now thanks to me she does know the name of the GP and they were extremely nice when I called there with Elizabeth. Elizabeth has given permission for me to speak to the GP. What I am concerned about is that some drugs are prescribed via the hospital ie 350mg of Clozapine. Then 500mg Metformine is being prescribed by the GP. I have had this situation before – a skin care drug called Lymececlyn was being prescribed by the GP on top of other drugs being prescribed by the hospital. Luckily I research this drug only to read that this skincare drug should only be given short term. Immediately the GP stopped this chemical especially when I provided evidence as to potential harm. Now a GP is there for physical health and therefore I pointed out that the drugs concerned were CONTRA INDICATED. I have been told that I must not interfere in anything to do with the drugs but as you can see there is a huge problem here – who is looking at my daughter’s physical health. Obviously to be given Metformine there is a problem and when there is a problem or even a potential problem a review needs to be given otherwise if things are left as they are then this will be a drain to the NHS as my daughter could become even more seriously ill.

So I am copying this link of my blog to all of the politicians. I want to know what they are going to do about this.

So far I have seen anti stigma campaigns and then £25,000,000 spent on police working alongside MH professionals. I as a mother want to know what is being done about specialist centres ie somewhere that can really look at what harm is being done by such contra indicated drugs and if there is harm being done then quite rightly so things need to be done properly – on an acute ward full of other people it is not a good place to deal with something like this. I would hate my daughter to end up again on an acute ward. A farm full of animals would be nice with the expertise of Dr Walsh and someone who really knows the full workings of the drugs and there are experts out there.

Where are the facilities – this question is given to Mr Hunt, Mr Lamb, Mr Burstow and Mr Clegg. I would like to hear from them all about this as I want something done about the decline in my daughter’s physical health and I intend to address everything at conferences and in public if something is not done.

I am not happy that there are some honest professionals who have to go along with a system that is rotten and needs changing otherwise they could lose their jobs or be bullied and harassed. Well I have less to lose than they do and I do not care what people think as I am more concerned in drawing to people’s attention what is really wrong with the care than my own reputation which is probably shattered in any case judging by the things I have read about myself in past files. These people have never really got to know me or really taken an interest in home and family background so why should I care less what is said about me.

So, we obviously need to know if there is something really wrong with my daughter physically or if something has shown up on the tests that the team are worried about. The reason we as a family need to know this basic information is that if say my daughter has got diabetes for instance I as a mother need to know what diet she should have when she comes to stay with me or the rest of the family. If you are not provided with this information then that could be detrimental to the physical health of my daughter.

Somebody on Twitter has said that people with MH problems can get better – I replied to the contrary – how can someone get better if their physical health is being ignored.

There is much in the way of research going on right now that the public may not know about. The Government should be giving more funding to those experts who care about the physical health and there are such experts about who are being honest and admitting that whilst the drugs can be effective for some, others may not be able to metabolize them but then again what about the long term effects of the drugs on physical health.

Whilst the Government is stripping the NHS of funding and A&Es/Maternity Wards are being closed down in favour of private sector care – well as far as MH care goes I can comment that the prime care of drugs has remained the same and even increased yet it has been pointed out that the drugs are contra indicated at the same time – the prime treatment remains the same. Much needed A&Es are being shut down that provided a good service and what is draining on the NHS is MH care for those returning time and time again on the wards but what can the staff do. You cannot just take someone off the drugs on an acute ward. It can make someone unstable if they have any change in the drugs as well. All I have seen time and time again is increase after increase in the drugs after each admission. This is clearly not the answer and having sat down with my daughter her memory is still intact going right the way and certain people were mentioned as though she was in a time warp. It reminded me a bit of my father with Alzheimers.

Here are comments from my daughter Elizabeth “Mum – I do not think the drugs are doing me any good”.

I had nothing to say to these comments – what could I say when I have looked so hard to find a decent place that could help my daughter but there is nowhere in the UK that I know of. All I know is that if done correctly someone can be drastically reduced off the drugs but if a drug reduction is done too steeply then it is bound to fail and then a psychiatrist turns around and wrongly says “you have to take the drugs for the rest of your life”. If things are done correctly in the first place then this is completely wrong and untrue.

However I have heard from more than one professional that SOMEONE IS IN FACT TAKEN OFF THE DRUGS WHEN BLOOD DISORDERS OR SERIOUS HEALTH PROBLEMS ARISE. Yes it is done.

I am 100% behind Chy Sawel because when someone has the right diet and nutrition and environment whilst tests are being done unlike under the NHS – in fact some of these tests not on offer you have to have done privately like I have had and that costs money. So here is another way the NHS can save money. What is the price of having such tests done at the Bio Lab as opposed to just carrying on drugging all the time until someone has a very serious health problem?

This is the question I wish to ask all the politicians.

I would also like to see them come to the next Chy Sawel meeting so they can hear from more than one mother and some former patients what care is needed. It would be great if they could provide a suitable meeting room that is convenient for them all to attend themselves as this is so important that something is done as soon as possible. I cannot accept that a change can only take place very slowly and gradually when there are lives at stake here and that means urgent action is needed.

As regards the training of these up and coming professionals under the Royal College of Psychiatry – it is a good thing that Sir Simon Wessely wishes to change the image of psychiatry. I think he should take these points into consideration as well as the entire Government. After all I am not dismissing the drugs altogether however I have made some very valid points here and can provide proof.

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2 comments
  1. keith froussis said:

    My daughter has been is prescribed Omeprazole. which can deplete Clozapine plasma levels by as much as 44% It is illogical to prescribe a drug that can lower the effiiacy of the one drug that keeps B mentally stable. When I attempted to do something about it I realised that although B’s drugs are dispenced from a single establishment, the responsibility for prescribing them has been conveniently dispersed between several independent medical facilities. If something goes wrong they can split blame between PSYCHIATRY, GP, CARDIOLOGY and PHARMACY

    My daughter had been ordered to admit herself to hospital where upon her medication had ben abruptly withdrawn which caused the relapse that she subsequently suffered some 14 days later, Since initial hospitalisation B has been given Clozapine, Olanzapine, Mirtazapine all together (very dangerous) Then Lorazepam Lithium, Bisoprolol -Fumerate, Ferrous-Fumerate, Hyoscyamine Lactulose, Aripiprazole, Fluoxitine Omeprazole, Gaviscon, and Aspirin

    Aspirin, an over the counter drug, is administered in a tumbler of water that is said to contain 75mg of dissolved aspirin. With Lithium, don’t like the sound of that.

    I have just been banished to a single visit per week. The crime. They discovered that I had made an appointment for B to see a private cardiologist

    That’s all for today

    Keith F

    • Here is some of the wonderful advice I have from a leading expert and I challenged the 500mg of Metformine the GP was prescribing. There is no communication between the consultant psychiatrists and GPs and also I heard that Lithium is no good with the Clozapine. My daughter was on 800mg of Seroquel before this for a long long time. Now I found out that the care home was giving excessive drugs with lorazepam and other things. At home my daughter is managing right now on an extremely low dose of Clozapine. If someone is treatment resistant then no wonder the drug before at 350 mg was ineffective. She was in bed at 6pm and asleep in the afternoons. Now she is at home and I am being taken to court and I want the world to know about this. “I want to come home Mum” – well no wonder when a member of staff is saying things behind your backs “who do you want as next of kin” – I have not got the court papers through yet but I want this to be a very open court for the world to see as I believe in openness and honesty. They deprived Elizabeth of the drugs for 3 days and she is fine despite being on just 25mg. Everything is being reported back to social services and social services want her back in the care home and everything they are doing is a waste of taxpayers money. The drugs are a waste if they do not work, the placement is a waste when Elizabeth has settled down. I took her to have her hair done the other day. I am getting on OK with her and so is the rest of the family and there is no problems whatsoever. I had all of this treatment you mention at the Royal Bethlem Hospital where I was threatened with arrest where staff wear name badges back to front. At Cambian they gave me supervised phone calls with a slot I could not even ring at that time. It is absolute abuse what is going on under the law of the UK and no one does anything. I contacted Justice For Families and they are inundated – what is wrong with this country. How can this be allowed to go on to vulnerable people. I am in touch with so many mothers who have people locked away for years on end and it is about time the Government did something about it. Heal the Regulators are meeting with the BBC soon. Take a look on Twitter and I would recommend you contact Mr Lamb and Mr Burstow direct. If you are in the London area I could put you in touch with so many others. I meet with former cruelly treated patients and mothers who are in despair at a system that is cruel and abusive which I am documenting on my blog. The more people who document this abuse the better. Luckily there are some decent consultant psychiatrists on the CEP – take a look at their wonderful website.

      Susan

      I have just read a paper in the Journal of Clinical Psychiatry on the effectiveness of Risperidone at low doses on complex PTSD. That is of course whet Bob Johnson thinks is the cause of your daughters illness and the scientific literature here is confirmation of that. Complex PTSD does respond to Riperidone and intrusive thoughts and hyper arousal responds well to it. Hyper arousal is of course responsible for explosive outbursts of rage in patients wrongly diagnosed with treatment refractive schizophrenia. I am now convinced there is no such condition and those diagnosing this are unaware of P450 metabolism and complex PTSD.

      Treating PTSD as refractive schizophrenia is perhaps the greatest error in modern psychiatry and cause untold suffering and waste of resources. Giving patient huge doses of Clozapine or other atypicals when low doses of Risperidone can control the symptoms is absurd and a terrible indictment of psychiatric ideology. Many patients currently dose to the maximum could benefit from a low dosage if the shrinks would simply think beyond the DSM and their rigid and irrational ideology.

      Barry

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