I have had calls two days running from Elizabeth – some weeks you hear nothing at all. I am not on the phone every minute to her but I do worry when I do not hear anything. If there was something seriously wrong I fear I would be the last person to know. Such is the ruling of confidentiality. I think the whole system is wrong here for there are certain things that a family would wish to know without a team having to make such a song and dance about. I am pretty sure that no one in the team wishes me to see the files. I had a good idea of the sort of thing that can be said behind your back as I have seen past files- however I am not going to worry myself about this for it does not bother me – the team do not know me. The Doctor has not once met me in person despite my daughter being admitted about a year ago. It has been referred in comment by the psychiatrist regarding my “past behaviour”. These comments are just an excuse not to invite me to meetings unlike the rest of the family and initially I was delighted my daughter was referred.
Anyway Elizabeth is clearly missing the family and home. Home though being London is hardly the place to get better as Elizabeth needs a more peaceful environment now. Elizabeth would need a lot of looking after in any case having been in hospital for a long time. I could not leave her in the house alolne but I doubt she will be allowed home – she would need intensive trauma therapy. It is important that Elizabeth becomes confident again and gets the kind of care not available locally, however the care I have seen is abroad in such centres like Earth House and Cooper Riis. I do not feel that it takes a professional to give all the care having seen the reaction of my daughter to have a neighbour knocking on her door asking her to come out for the day. This is the kind of support – friendship and peer support. Professionals I see as very controlling and I suppose they have to be to a certain extent in a hospital – that is why I am keen to see Elizabeth out of hospital – the longer she is in the harder it will be to rehabilitate her. A scheme where there are individual flats may be good for some people but I am keen to see that Elizabeth is not just put in a scheme like the last one. I have seen people go downhill, not eating well, drinking because of solitude and not being able to do basic tasks. Someone like Elizabeth has been made dependent on others and the answer is not that she becomes dependent on me either. However I worry and hope that things work out this time around as you read so many cases of abuse with people working with vulnerable adults and not all get in the papers. I know of cases personally. I also do not think a hospital is the right place for Elizabeth surrounded by other seriously ill patients probably sent there as a last resort.
Elizabeth asked after her pet cat and said she wished to come home but there is nothing I can do right now as we are waiting for the dates of the Tribunal. Things take so long in the UK and it is all very well for some people I am currently speaking to on Twitter to turn around and say things take time. I see it as lack of efficiency in my opinion. I do not agree that nothing could be done about this here and now to get things moving at least. What is wrong in just seeing how things work out with a centre like Chy Sawel being set up with funding an Dr Walsh and other doctors, some of whom are already signed up for the training being involved. What is wrong rather than keep someone in hospital for years and years on end at huge cost to the public.
I know other mothers who are desperate to see change as their sons are drugged up on such a high dosage and can hardly move themselves. I think it is disgusting that the UK allows this kind of treatment when there are possibly better alternatives with Dr Walsh coming over. The mothers I know are professional people – their sons/daughters coming from nice backgrounds.
What is wrong in seeing how a scheme like this works out with volunteers, with former patients being involved, with nutritionists working alongside Dr Walsh. It is easy to experiment on drug after drug at somewhere like the Bethlem however when these drugs do not work a fresh approach needs to be made and centres set up offering therapeutic care rather than forcing patients to take drugs and ECT.
For those patients who get on with the drugs and have had results from ECT – I am not criticising them in any way. If people are happy to take the drugs all well and good.
I am just saying that there are as many who are suffering from serious side effects and would like to see change and this could in turn save a lot of money to the NHS and public if proper centres were set up to help people like this instead of forcing them to forever take the drug that is affecting them badly.
Drugs mask the problem and if that person has been abused or suffered terrible trauma then the drugs will not work and should only be used short term. It is wrong of a psychiatrist to say you have to be on the drugs for the rest of your life however coming off the drugs are dangerous and I would not recommend this to anyone stopping their medication. However if professionals were involved and specialist centres set up then a better look at overall health including nutrition could be the answer. In the UK they do not seem to know how to reduce someone properly in any case and this is where people like Dr Ann Blake Tracy should be involved. Extensive tests like the ones I have had done at the Bio Lab should be given to those patients who do not get on with the drugs and then a choice of care offered. I disagree that such changes cannot be brought about sooner rather than years and years ahead. I and all the other mothers would be more than happy to help implement much needed changes.
I would also like to see the courts involving mental health cases to be open as the public have a right to know what is going on.