Just back from Wales visiting Elizabeth and we stayed at the most fabulous place. A peaceful location and cottage in the location of a farm. The whole family were together on this occasion and arrived separately. My younger daughter had sought permission to have Elizabeth come and stay at this fabulous accommodation and surprisingly this was agreed as it was for 2 nights and never before had this been agreed but also the rest of the family were down and of course would want to see Elizabeth as well. Things are very amicable within the family and we were united in support of Elizabeth by getting together to join the meeting.
It was late when my younger daughter arrived after a dreadful journey and straight from work. When I told her that we were expected to go very early in the morning to take Elizabeth back three hours prior to the actual meeting she just burst into tears. This put me on the spot and I started to think we have had a long journey and this was all sprung on us and I then telephoned the next morning. When I spoke to the senior member of staff I was shocked at the reaction when I said I would need to get advice on whether it was OK for us to go along so early prior to the meeting – the reaction was “you have to get her back” – I then enquired why and I was given a reason and pointed out that my younger daughter was upset and that she did not arrive until really late. I also pointed out that I needed advice on this – after all the meeting was later. “You have to get her back” – it then turned into something of a comedy and I said Oh no I don’t – she said Oh yes you do and this went on and on. It was menacing to hear the words “this will go against you” – well it is not the first time I have heard this threat. In the end I received the required advice and was happy to follow this advice and return Elizabeth early but when we arrived the two people who were supposed to be there were not there at all and the first people to arrive were Elizabeth and her sister. All of us arrived later and all of us sat in the box room for nearly all day long. It was the first time ever the whole family were united at the meeting. The meeting took a good part of the day and much was discussed without the family being included. Elizabeth’s father received a recorded delivery letter inviting him to the meeting whereas I did not. I had to find out the location of the meeting and details myself. Elizabeth’s sister was once again upset by the occasion as she had hoped to come and support her sister but was left to sit there in the box room with the rest of the family. It is one thing that I the mother is excluded but this is unacceptable in my opinion. Elizabeth wishes to come home and I would have her home and with the help of Rojene 24 hour care I would be able to manage. If Elizabeth was to come home I would appoint a nutritionist having read the book by Dr William Walsh but the last time I took Elizabeth away from services after a shocking incident there was no help forthcoming and this is what happens. Apparently everyone is on a section where Elizabeth is and two years is a long time to be away from home and in this kind of environment. Apparently some are kept for 3 years and if that was the case it would be a total of 5. I know people whose sons/daughters are still stuck in hospital after much longer and I think this is wrong. This is why I am trying to support Chy Sawel and it would be wonderful if this could be set up which could help many who the system has failed. This meeting did not achieve anything like I had hoped and it could go on and on as no one seems in a hurry to do anything.
I have to say the system is certainly an eye opener. Elizabeth after all this time has not seen a vital report and I made sure I read this report to her. The report is about her so why did no one in the team read it. I am sorry but I cannot disclose the contents of the report as it is confidential but what I am saying is that patients are treated like nothing and if a report is about them then they should know what is in the report. I made sure I did this as Elizabeth is entitled to know. That is the whole problem with the care system until MH and the law which can be easily distorted and this I have clearly seen. It is shrouded in secrecy that is the problems whereas in Finland there is honesty and openness in the form of Open Dialogue in a place called Tornio and how I wish we lived there.
Elizabeth was very happy to see and have the whole family behind her. After spending all day in the box room – the family in its entirety hung around for when Elizabeth was brought out with the drugs which apparented are “contra indicated” so I found out by an expert. I intend to find out more about this that is for sure. The nurse who totally overeacted to the fact I would not immediately jump to demands without consent and advice first was on hand to comment reflecting on earlier and the importance of returning Elizabeth on dead time. It was like a teacher speaking to a child at school. The rest of the family spent a happy time with Elizabeth apparently in Swansea and then brought her back and then the next day we celebrated a member of the family’s birthday – I also got a further ticking off by the member of staff for a minor incident – nothing to do with the drugs of course! You can imagine how it must be for the patients themselves if this is how I as a mother am treated. Elizabeth has only got to open her mouth and say the slightest thing and it could be blown out of proportion. Like for instance her sister- getting back to the meeting – she had agreed for her sister to accompany her and support her and then we all heard the opposite. No team members were on hand in the box room to witness my younger daughter in tears – they were all busy at the meeting themselves discussing things whilst we the family were left to sit there and none of us were allowed to speak a word when eventually right at the very end when only the date of the next meeting will be discussed. I doubt I will get a copy of the minutes!
We had a nice day today and spent most of the time with Elizabeth before dropping her off though the weather was not good.
I do not know whether it is her choice or not but she only gets out twice a day and she seems to suffer panic attacks now which I had not noticed before. We were out with her today and she could not immediately get out of the car. The rest of the family and I are worried that the longer the time spent in hospital the more she will deteriorate and lose confidence.
Now I have to beg for more time off work to go down to another meeting which will be arranged shortly. Some of the family like my daughter had to take time off work unpaid – and nothing much was resolved at all.
In the meantime I have been receiving advice from lots of people and someone extremely knowledgeable has been very helpful. I am grateful from the help and advice of a leading expert who is extremely knowledge on the drugs and other areas.
The knowledge I have gained I feel is so important that I should contact Sir James Munby’s office for an appointment to discuss these important issues. The secret courts are being reviewed right now and hopefully that will mean a change for the better and more fairness. I wish to discuss the changes that I feel should be made to the current system as I am in touch with many other mothers who are also in the same situation.
There could be huge savings to the taxpayer if something was done about the present system that is for sure.