http://estore.kcl.ac.uk/browse/extra_info.asp?compid=1&modid=2&prodid=211&deptid=17&catid=16

I am posting this link to advertise a forthcoming event at the Institute of Psychiatry on the 04 July between 09:00 and 18:00
Email contact sapphiresummit@kcl.ac.uk.

Speakers Frank Bruno MBE
Norman Lamb MP
Lord Dennis Stevenson
Charles Walker MP
Dr Diana Rose – Service User Research Enterprise
Clarke Carlisle – Chairman of the Professional Footballers’ Association & Ambassador for the ‘Kick it Out Campaign’
Eleanor Longden – Doctoral Researcher and Intervoice Activiist
Bill McKnight – Poet, Author of ‘Loud Silence’

I hope I will be able to attend this myself.

Today I met with members of the group Speak Out Against Psychiatry and would like to point out that I am proud to attend regular meetings with the former patients who are an inspiration to me and I commend their bravery in speaking out despite suffering through shocking “care”. I think the group could play an important role in educating but also in much needed peer support.

In terms of “Stigma”, as a mother of 2 daughters, I am not ashamed to tell the world my experience – the more openness the better as this can override any stigma. I believe many are being wrongly labelled without any proof especially those who have suffered abuse, bullying and trauma – professionals are quick to push drug after drug without proper assessments and the drugs can have a devasting effect on some people.

Anyway, I would like to attend this event myself if I can. I believe it is they – the professionals who are responsible for causing stigma through labelling someone and I would be delighted to tell them all to their faces how I as a mother feel. I know for a fact my elder daughter gave up and lost hope altogether after being labelled with Schizophrenia – where is the proof of this when she did not have a proper assessment at the Bethlem.

A professional social worker who came out with the words “she would be more comfortable with her own kind” – is guilty of causing stigma in the most patronising manner.

I believe the press/media can cause stigma as they portray mental health patients in far from a decent manner which causes ignorance amongst the public.

Then you get some of the charities themselves constantly going on about stigma when they should be looking at alternative care instead in my opinion.
I think they make matters worse and should instead be focussing on campaigning for choice in care, an end to forced drugging and inclusion rather than exclusion. By doing nothing apart from going on and on about stigma they are making matters worse and should be doing something more constructive.

Some carers feel afraid to speak out because they feel affected by stigma however I as a mother feel differently as I believe that mental illness can affect anyone and I can see where all the care is wrong and where it needs to be improved.

Anyway I spoke to Elizabeth yesterday. She sounded OK but spoke of feeling confused and mixed up but then that is no wonder on the volume of drugs sheis currently on. Elizabeth is awaiting a visit from the rest of the family this week and I am hoping to have a meeting to discuss the way forward myself.It is crucial that Elizabeth gets the right placement this time and especially being a long way from home. I believe therapeutic communities are the way forward for some and may benefit Elizabeth so she can regain her confidence. This will never happen in hospital – it is the wrong environment for Elizabeth. I think it is harmful of a team to influence the person they care for against a family member in such a personal way like they have done with me. Elizabeth has always wanted family mediation but now it looks as though I may have to get a mediator myself just to communicate with the team, especially in light of what happened with the Tribunal and to think, the entire team knew about the date set for the tribunal except for myself, my solicitor and Elizabeth’s independent doctor. It was a good job I found out! – some of the staff could not conceal their shock when I confronted them on this. Now this has thankfully been cancelled by my solicitors as I as Nearest Relative will need to attend and also the sister of Elizabeth wishes to give her statements. Even if the team do not like me they have no right to deny her sister the opportunity to give her statement.

Anyway turning to the missing supplements which should have been used by the Bethlem to help in the reduction of the drugs (which Professor Murray himself promised in his letter) it is only right that these should be replaced and the Bethlem have not refused as they cannot find a trace of these to their credit.

However I have yet to hear such a satisfactory outcome from Cambian about the missing oils -(a young nurse who I remember as being very nice from the Bethlem remembers them being packed) so now I want to know where they are as they were very beneficial to Elizabeth and they should be replaced “the only thing that helps me Mum are the oils” – that says it all! I must get on to the Head office next week that is if I do not have any satisfactory response from Wales.

I must also phone and speak to Dr Walsh himself as I am keen to get the correct treatment in place having had the test results done.

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4 comments
  1. Me said:

    Hi there, I agree with a lot of your points, but be careful. You need support otherwise it is very dangerous to speak on the open. It would not help your daugther if you dissapear of the middle. Peter R. Breggin, MD is a psychiatrist in US that is against drugs medication. You can check facebook where is much easy to contact him, her website has an email contact but is hard for them to email back. In facebook there are chances that they reply back. If you can read the following book it will give you the baggage to support evidence of how these drugs affects the person, you can order the book in the library or find second hand copy ” Brain-Disabling Treatments in Psychiatry” (http://breggin.com/index.php?option=com_content&task=view&id=19&Itemid=45).
    There is a lot of people in the same situation but it is hard to help, is like a huracan that if you are in the centre you can easily be taken off! Dr Breggin can point out psychiatrist in uk that can maybe help. I wish you the best.

  2. Me said:

    It would be important that you request a copy of the electronic files and hard copy data that is holding in hospital, mental hospitals and social workers etc.. You will have to ask for the document to be fill, and take it when you see your daughter to be sign giving you permission. The documentation can be send to your address. You need to do this for every diferent place where she has been. That can help you somehow further in the line… Any letter that you write to them needs to be say explicity that you want a copy register in her file.
    These and the other message are for you. I do not mind if they go public or not.

  3. Me said:

    Be carefull things can turn towards ECT … It is not advice to cut off suddenly in any of this drugs if the person has been with them for some periods, otherwise things can go nasty. Some relapses are in reality caused by the change of stop of drugs. YOu need a good doctor to help someone to reduce and finally come out of them. It is a complicated matter.

  4. You are quite right and the team have accused me of encouraging cessation of the drugs and telling my daughter to stop taking them. I am not a doctor and so would not be qualified to do this. The fact is there is not one centre in the UK to help someone be reduced or come off the drugs if they are suffering from terrible side effects or health problems as a result. My daughter was told she had to take them for the rest of her life. A lot of people are abuse victims – something has happened to them – they have suffered trauma yet the “cure” is the drugs without proper assessments as regards food allergies/intolerance, deficiencies in minerals and nutrients. There could be an overload in copper or lead for instance leading to adverse behaviour. Dr William Walsh has conducted research into this and so has Peter Bennett of Rehealth. Some people could be helped with such a proper assessment being done and treatment by Dr Walsh rather than one drug after another. Sadly my daughter has been on 14 and I know only too well you cannot just come straight off them. It can take up to 2 years but I also know people who have come off the drugs and are doing well for themselves but have suffered severe illness in terms of withdrawal without any proper support and they have done this themselves. I would not recommend this – I am not a doctor but I think it is extremely bad that when things go wrong with a drug and someone is constantly re-admitted time and time again to acute wards, the only care is to up the medication or try out a new drug. This is what has been done to my elder daughter who is only 26. Her life has been ruined and she would be termed as a victim of the pharmaceutical industry. When you think what profits these companies make and their drugs can have an adverse reaction to some people in terms of severe aggression or else suicide- what are they doing to help the victims and the answer is nothing. The drugs are passed in such a way that it would appear they are safe but I know having watched my daughter that the behaviour I witnessed could only have been caused by the drug. Her eyes were dilated, she complained of feeling like she was crawling out of her skin. Her moods ranged from suicide to aggression and she started to suffer from hallucinations LIKE NEVER BEFORE. It was terrible to watch her go downhill and not once did I ever suggest her stopping taking the drugs but I did appoint a private psychiatrist as I was so concerned at all the terrible side effects and shocking pain she was in. He was going to reduce her but this was a professional psychiatrist and NOT me as a mother. You are supposed to report such serious side effects as per the label but when you do report them to a doctor a patient just gets ignored or they get put on an even higher portion of drugs. Every time Elizabeth ended up back on the ward because the care in the community failed her, she was given an even higher dosage of drugs.

    It is so sad and cruel and something should be done about this. No-one should be forced to take the drugs against their wishes but there is no alternatives in decent humane care in the UK and it would appear that some doctors do not know how to reduce someone off the drugs properly – it was attempted once by her psychiatrist a reduction of 50mg – far too high. The advice of Dr Ann Blake Tracy on her cd was ignored by the team at the Bethlem – there were two members of the team including the consultant psychiatrist that just sat their smugly smiling. When I was told about the reduction of 150mg within 2 weeks – the entire team knew this would not be possible. The only aim at the Bethlem Royal Hospital was to get her on Clozapine and they did this in the most underhand way and ignored the Advanced Declaration and letters instead they took control – they could have forced her to be injected for all I know – her face was covered in bruises and yet the only comment I got was “I am happy with that” – Lead Nurse “It’s all about Clozapine here – you should have done your research” – another lead nurse.

    I have met other patients who have had ECT and they to this day are distressed about this procedure. It is absolutely inhumane what is going on and I think this procedure should be banned or rather on offer only if a patient specifically requests such treatment themselves but then again when someone is drugged up a team can play on capacity to their hearts content, take control and do whatever they like as they know they are protected from the complaints procedures that lead nowhere and they are a law unto themselves. Even death is covered up – files went missing at the local hospital and notes tippexed out. Everything is geared to protecting the professionals and not the patients.

    Even if you have the signed consent and Advanced declaration – the signed consent allowing sight of the files to the family – the team can turn around and refuse by stating “she does not want you to see the files” but what right does a team have to refuse the solicitors when you are the Nearest Relative causing a Manager’s meeting not to take place.

    This is where the law needs to be looked at and so does the procedures at every hospital.

    It was a good job I found out about the Tribunal arranged and that the entire team knew about this except for myself as Nearest Relative, my solicitors and the independent Doctor. I was then told the date could not be changed but I said “Oh yes it can ” and I got on to my solicitors.

    Whilst all this delay is taking place the hospital must be reaping the benefits in terms of money by dragging things out.

    I think the UK needs to take an indepth examination of the care on offer and look at Trieste in Italy for example and Tornio in Finland. It is absolutely cruel what is going on in this country.

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