MEETING WITH PAUL BURSTOW MP

I was very pleased to attend this meeting as it gave me an opportunity to discuss mental health care and to bring along information and the wonderful book by Dr Walsh, as well as the leaflet all about Chy Sawel.    I gave copies of my own leaflet detailing the enormous amount of chemicals plied to my daughter Elizabeth and said none have worked and that no thought was given to physical health.  I was able to back this up with proof.

I was led through to a restaurant area with indoor trees and I have to say Mr Burstow listened intently to what I had to say –  none of it good apart from when I described the care that is needed referred to in the brochure of Chy Sawel.  I also told Mr Burstow of the importance of proper assessments otherwise this could lead to mis-diagnosis and wrong treatment.    I said the Government should look very closely at the current system particularly in this regard.  I thought I covered quite a lot, from examples of where care had failed Elizabeth (which I cannot put on my blog) to care in the community and how this is failing so many with acute wards overflowing.  The fact is that  people need more support in some cases where they have been on wards for years on end and not just dumped into the community whilst others become isolated.   He asked why I was against the anti-stigma campaigns so I said that they were not helping my daughter and others who are on sections – the forgotten people.   Mr Burstow said he was attending a meeting with Mr Lamb directly afterwards and I hope they actually do something about this situation as I do not believe anyone should be written off.   I have had some extremely good advice lately from a top expert that I cannot just dismiss and this has made me more determined than ever and I hope that when I go forward with this advice (hopefully the results will be good) I will share this with the world.

Meanwhile I am concerned with Xmas coming up what is going to happen.  Even if Elizabeth is not allowed to see me at Xmas it will be good if she is allowed to see someone in the family – I hope that the rest of the family can bring her down as I will only have two days – Xmas Day and Boxing Day.  Last year we were not allowed to have Elizabeth at Xmas and Xmas was quite a sad occasion.   What can I get for Elizabeth? – she is on a hospital ward and so many things have gone missing –  Elizabeth very much likes music and she would be delighted to know that there are so many musicians/bands that are supporting her via Twitter but she would not be well enough to enjoy a concert because of all the crowds.   Whilst Elizabeth knows I have a blog,  I do not of course show her my outspoken comments regarding what I think of the chemicals she is being prescribed and I have no regrets about these comments – none of the drugs have worked and they are making her go downhill with her physical health.  I am appalled that no one cares about my daughter’s physical health –  just by having blood tests and things like this does not make me feel happy besides I am the last person they would wish to share information with if anything is wrong with Elizabeth’s physical health and the secrecy surrounding the care is something that is not good at all and as I have discussed open dialogue is needed and inclusion rather than exclusion where possible with families should be given.   I cannot wait until Dr Walsh comes over here –  I believe nutrition and diet is very important. 

Elizabeth is not well enough to travel too far – even walking around a very nice shopping centre was too much for her and we had to take her to the cinema instead.  It would be no good me taking her to Central London as Elizabeth would not like the crowds, the escalators/stairs.  There is no way Elizabeth would be well enough in the foreseeable future to return to a normal life in the local area.  It is sad she is missing out on her life –  apparently she asked to go to Finland and that is a country where in a small area called Tornio there is the best care in the world so I heard.  Elizabeth also has happy memories of Finland as she worked out there once. 

It has been over 2 years that Elizabeth has now been in hospital and this is not doing her any good.  I want her released but this is taking so long –  I just cannot understand why things take so long when I could have arranged things in a week..  Elizabeth has asked to come home and I would have her home but this will not be allowed as the team have got it in their heads I will stop the drugs.  

The issues are all around her taking the drugs and the fact they believe I would stop the drugs or persuade her to stop taking them.  How  many times do I have to say I could not even if I wanted to.  I know very well that if a reduction in the drugs was to take place then this would have to be done by experts not me – I am not a doctor.  Besides a leading expert told me it could take at least 4 years.

I said to Mr Burstow that it is a shame there is nowhere where someone can be reduce or come off the drugs safely  even if they are misdiagnosed.  There are people that know the drugs inside out and I am afraid from what I have seen I am not too sure whether someone like a GP or a psychiatrist knows the full workings of the drugs and if there was to be any changes in her treatment I would have to see that my daughter is referred to a bio medical scientist who would knows all about the drugs.  Certainly an expert like this should be involved as there have been cases of suicide when reductions of drugs have been made incorrectly leading to suicide. There would be no chance of this because the outdated law of the UK is all about enforced drugging and CTOs which is another thing I discussed with Mr Burstow – how wrong this all is.  I am obviously against this as I feel this is cruel and abusive and believe that proper facilities should be provided in cases where there is doubt and also that drugs should be a matter of choice for individuals rather than enforced.   I think I had come to Mr Burstow’s attention with my outspoken comments on the Bethlem. – this place my daughter called prison where they were supposed to give a drug free period of assessment which was done completely incorrectly in my opinion.  I would like to see what has been written about me in their files after the way I have been treated. 

One of the main topics of discussion with Mr Burstow was the law itself and how badly this needs to be changed.  This is the most urgent thing of all in my opinion.

I hope that I see such changes as per my discussions, as I can speak for many other mothers who are not being so outspoken but are extremely unhappy too.  I would have liked to bring with my a group of these mothers to meet Mr Burstow but then this meeting would have gone on all day long as there are so many issues to cover and so much wrong with the current system.

I hope these matters will be addressed as a matter of urgency in Parliament and I would like to know what Mr Hunt is going to do as not once has he replied to my emails.  He should be looking at the waste of money to the public as it is costing a fortune to send patients to the private sector for years and years on end because local care has failed.  

All these important issues are being forgotten about in favour of anti-stigma campaigns and it is far more important to provide decent care and proper assessments and sort out the law because when it comes to long drawn out cases this is costing the public money.

I was able to provide evidence and proof of what I was talking about.

I hope I will be asked to go back for a further meeting in order that I can be informed as to what exactly they are going to do about the situation so that I can pass this on to all the other mothers and former patients.  This is an extremely urgent issue and should be dealt with as top priority –  I shall write for an update on this if I hear nothing but I am grateful that someone has cared enough to even meet me.  

 

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