Xmas this year has been good. My daughter Elizabeth has been allowed to come and stay and has just left to be with the rest of the family. .
Elizabeth asked me to pass on her thanks for everyone’s kind support – lots of people, complete strangers from all over the world have offered to help and have sent personal emails. Elizabeth likes music and I showed her some of the musicians following her but I do not show Elizabeth my outspoken comments on my views regarding the drugs and her treatment. Elizabeth wants everyone to know she had a great time at home this Xmas.
We had guests over in the evening that my younger daughter knew from Italy who were away from their families at Xmas. I did some food as I had quite an abundance of food in for Xmas. Unfortunately the next day Elizabeth was ill not surprisingly having probably eaten far too much. I have noticed every time Elizabeth eats she feels ill and this reminds me of when she was on Aripraprazole. I thought she had developed Bulimia on this chemical. The hospital had given her a gift voucher and I got her mainly clothes and money but Elizabeth will be too ill to trapse around the shops in London – she would not like this at all so I have warned the rest of the family not to take her shopping in the sales.
Elizabeth wishes to share some good news with everyone. She wishes to tell you she is being discharged from hospital soon but she needs to look at some places first and has only been to see one (I cannot mention where) and she liked it. Elizabeth asked to come home and live at home but this will never be allowed as the team do not trust me and think wrongly that I would take her off the drugs or persuade her to stop taking them. The leading professor tells me it takes 4 years to come off these drugs in her case. I am not a doctor and unfortunately do not have the knowledge to reduce someone off drugs for a start and even without the fantastic advice I have been given this kind of thing should be done in a proper environment but my criticism is where is there a proper environment if treatment goes wrong or if diagnosis is in doubt. Elizabeth has still not been shown the report by an independent doctor by anyone. I think this is bad. She has also not been told by anyone in the team about possible discharge. I have told my daughter this good news and it is good job I know about it as to keep important matters like this from a patient is not right and extremely unfair. It is not honest to do this. If any mistake has been made in diagnosis then it should be rectified and an apology given and fresh look at treatment but no one will ever own up to this. Things can easily be covered up when matters are kept secret like an independent report from the patient and I have been extremely honest with my daughter and this is why I do not like the current system of care. I do not agree with such secrecy. This is why things need to be changed and patients who has been misinformed be properly advised and notified and the sooner things are changed then the better. That way the correct treatment can be given rather than plod and take the easy route. I am not the kind of person to take the easy route as nothing positive can ever be achieved and I do not mind the world knowing who I am either as I am not ashamed and do not believe in stigma. Elizabeth said she often feels ill on this medication after eating and suffers headaches. Unfortunately Elizabeth remembers past friends likes yesterday and I hope that once out of the restrictive environment of the hospital she will move on in her life and make the right kind of friends and be happy. Only with the right friends will she be able to move on and forget her past and of course the recommended intensive trauma therapy. By the way I do not agree with ECT as I am touch with patients who are most upset they have lost precious happy memories as a result and it is horrific if this kind of treatment is forced upon any patient. This treatment should not be forced upon anyone and if this is done then it is abuse in my opinion.
It is recommended Elizabeth has intensive trauma therapy and this should have been given in the very first instance. Anyone who has suffered abuse should be offered this treatment in my opinion before being put on the mind altering chemicals that do not work for everyone and being given a label that may well be wrong.
Anyway it will be a quiet day today and I intend to visit the old lady I have known for a long time. I have a lot of clearing up to do in the house.
Tomorrow, Elizabeth will be taken back to Wales. I have kept a couple of days back for when we may have to go down for any meetings.
In all it has been a very successful Xmas and I have felt so happy. The best part was us all sitting round the table having dinner together on Xmas Day.
I am full of hope for the future and things are looking positive and my main wish would be to see positive change: openness and honesty surrounding mental health care and involvement of families by way of open dialogue as families are excluded in many cases and everything is so unfair – a patient should be treated openly and honestly and this is not happening under the current system as I have documented.
There are many patients who are highly intelligent and could offer so much to others. One such person I will be featuring in my guest blog which I will do at the weekend. This person has written a fabulous piece called “New Psychiatry” and I think that this should go right to the top in my opinion – these valid points should be discussed at Government level. It is far too long to feature in my guest blog so I have sent a draft of what I wish to publish for the approval of this person who is currently a patient in hospital and knows exactly what he is writing and has had extensive experience of the system . All I am doing as a mother is listening and in fact I agree with much that he has written. Many professionals could learn a lot by listening to this person who wishes to be heard by the world and wishes to talk openly and honestly about his observations and views and I admire such honestly and am proud to soon be featuring this excellent piece of writing. This person should be given a positive role to represent the patients in much needed improvements in respect of mental health care in my opinion.