As always a weekend is very busy for me trying to cram so much in as I work during the week.
Saturday I was helping the old lady I visit occasionally with something and I missed the meeting where I go occasionally to meet up with members of SOAP however I invited these former patients to my house and did some food. The former patients are very decent people in my opinion and I would say highly intelligent – unfortunately in the press MH patients are portrayed in a very negative way and I did not hesitate to invite these respectable people over to my home for the first time. There are also a few mothers who have turned to the group and I admire these people for speaking out about the shocking care. I think it is extremely brave. It is one thing me doing that as a mother but it is all the more admirable to listen to some of the horrendous circumstances surrounding some of these former patients. I wished that Elizabeth was at home to meet some of these people who have come a long way and are what I would call “survivors”. It is precisely these people who in my opinion could help my daughter. That is why I think it is so wrong that patients are completely ignored and not given the opportunity to get involved in the care. It should not be all about qualifications – I appointed someone who was a trainee psychologist for example and this person was about Elizabeth’s age. My point is that some of these former patients would be more than suitable for peer support and companionship alongside student nurses and student psychologists. The people that are studying for degrees in this field should be involved in the care of someone like my daughter and have the chance to come and meet the families and see the background. Unfortunately some of these experts base their opinions on guesswork. How can they know what I am like as a mother when they have never met me or come to see the family home? Yet they can write what they like about you behind your back and this may well not be complimentary and some of these experts judge you on what has been written by other experts without even meeting you first to form an opinion. I feel this is completely wrong as when I found out that I was portrayed as someone who was abusive and hitting my daughter as a child my other daughter went to question her sister and she was angry and could not remember saying anything of the sort but then when someone is on a lot of drugs, if they are questioned along these lines it is shocking – the fact is you get labelled yourself as a mother by the team if you dare to speak out about the care and disagree with it.
I try an switch off my thoughts on Elizabeth and concentrate on other things. Today I have been busy at home tidying up and gardening.
I rang Elizabeth today but the conversation was brief as she was out and they had taken her to MacDonalds. I am looking forward to when Dr Walsh gets involved here with the correct nutrition and I am impatient for this so I may well give Dr Walsh a ring – the sooner the correct care and diagnosis is in place the better as far as I am concerned.
Anyway I am not happy with the CEO of Cambian as he is supposed to be looking into matters to do with my enquiry. Once again I find I am having to chase people up – I do not have much time to do this for a start and when something is promised – that promise should be kept to in my opinion. Anyway I can soon call there again if I do not get a response.
I have had numerous letters from some of the other mothers and have offered to appear on the C4 programme in respect of the Bethlem – I am waiting to hear- they may well have carefully selected patients for this programme but I would be delighted to speak from a mother’s point of view and also I know of others who would like to speak on this programme too.
Last of all I had a text message from Elizabeth “I love you Mum” – I have proof of this message which I would show to social services and the team alongside all the other messages sent when I was banned from phoning Elizabeth and given a slot of once a week at a time I could not phone. I have proof that it was not true that Elizabeth did not want contact with me – if that was the case then why would she have texted me throughout the time that I was banned from phoning and only allowed supervised calls.
This shows more and more the need for a complete change in the system and open dialogue – no wonder Tornio has 95% success rate.
As for the Governments gagging orders – this is ludicrous. This shows that the Government are afraid of someone like me telling the truth and there is no way on earth they should be allowed to get away with this. This spells an end to democracy if there is no freedom of speech and then more and more abuse will be allowed to go on in rotten system.
I have already said the law needs to be changed to stop this abuse and if there were decent facilities then there would not be the need for all the beds on acute wards which are appalling. There are organisations that need help is setting up like Chy Sawel and Root and Branch – Soteria that offer a different kind of care – humane care. What is lacking is communication – that is the main problem and of course playing on capacity and confidentiality. Noone wants me to see the files – what are they hiding in these files and I have a right to see what has been written about me and when I applied at the Bethlem I did not get all the papers. Where are the rest of the papers? Also the supplements – I shall need proof of the fact they are there with Cambian as I sent the Bethlem. The supplements cost £130 which is not a lot but it is the principal – these may be useful for when Dr Walsh comes over here.
Lastly Elizabeth has told the rest of the family she wishes to go to a therapeutic community – I as a mother am pleased about this. I hope that eventually Elizabeth can return nearer to home as we all miss her.