Elizabeth telephoned me yesterday – she was very excited on the telephone at the prospect of myself and her younger sister going to visit and we are undecided on what to do and where to go. Once again she excitedly spoke and suggested several places and said she would like to be with us in the hotel but all depends on the team governed by the previous psychiatrist and I will not know until Tuesday. The other psychiatrist used to give a quicker decision and was extremely nice in the way he telephoned me back even though he is busy. I respected this treatment as this is rare – normally you just get ignored or someone like a nurse will ring instead. It is right that a doctor should communicate and if there is any problems speak to you. It is wrong that someone thinks you are beneath communicating with and may have personal reasons for this which are used against you even when that professional has never met you and is going by things written previously in the files which are all too often totally inaccurate in my opinion having read many of them.
It is natural that I as her mother would wish to take Elizabeth somewhere very nice and make the most of the time together as we do not go down that often and most of the time she is stuck unfairly in hospital when she is no risk to the public or herself but just needs the support which I have found in the form of an Agency called Rojene. Rojene supply care in your own home 24 hours and bearing in mind everything that has gone wrong when Elizabeth was placed in a scheme locally I need to make sure as the Nearest Relative that my daughter has proper support. I did this for my own father under Direct Payments. Whoever thought of this scheme should be highly commended. It is easy to maintain the paperwork and if you are unfamiliar with working out the wages you can employ a firm to do this. All the Local Authority needs to do is provide the funding and this they did enabling my father to live an active life up to the age of 90 when he died. I was able to find wonderful carers and this worked well in conjunction with an agency and Crossroads as well as Age Concern. I am anxious that Elizabeth mixes in with the right company and whilst I realise she is limited to what she can do – she should be encouraged to some something even if only for a few hours a day. You cannot expect anything more when someone is on a huge dosage of anti-psychotic drugs but whatever job is given to Elizabeth should be one where it is therapeutic such as working with animals for instance and helping others. This may not appeal to everyone however, with a bit of incentive I believe it is possible with the right level of support given. This level of support was not given at local level and now Elizabeth is in a much more peaceful area where the lifestyle is much nicer I think she is in the right place. Also I have noted that there is a new law in Wales for holistic care. Mr Hunt is supposed to be interested in this and so why is it that a team are going against what the Health Secretary himself would like to see in place. Well for a start you need to look at the care in the community as it depends on how long someone has been in hospital as to how they are going to cope. Elizabeth did not cope and was not happy in the scheme and I cannot say what happened there but I can quite understand. It is like banging your head together. Noone wants to communicate and what is wrong is the law as the team at Cambian have constantly tried to say the opposite of what Elizabeth is telling myself, her sister and other friends and members of the family. This calls into question everything that is going on – there is no way on earth that Elizabeth would have replaced a perfectly good firm of solicitors I later found out that it was suggested by the team it would be best if she had a Welsh firm and that could be because she had given consent to her previous solicitors at local level that I could be informed of certain things. I am not interested in seeing the whole content of the file – I already know what could be written about me is not very nice at all – I have seen past files and have been told by someone in this team about my “past behaviour” – Surely I as a mother should be concerned then if this is affecting or restricting any rights of my daughter to see her family – all I was ever interested in was the level of drugs which is probably exactly what they did not wish for me to know however I already knew what drugs she was on as I got to find out and I am not happy that an off label drug is beign given for weight loss at 500mg. I was also not happy that other things were given on top initially such as Lorazepam to calm her down when she was distressed. What is the damage being done to my daughter on these drugs and surely as I have heard from other patients Clozapine is highly sedatory and it is very easy for someone weakened on these drugs to feel bullied and harassed by a team who want nothing but control.
“I WILL CALL THE POLICE ON THEM, MUM YOU ARE STILL MY MUM”
“I HAVE TO WATCH MY REPUTATION” “IT IS VERY STRICT HERE, MUM” “THEY MAKE YOU TAKE THE DRUGS”
The law is doing nothing to protect the patients who can tell what a patient is really thinking and then some can feel threatened into having to agree just like Elizabeth.
Well, I have every right to be upset as a mother – not only have damaging things been said behind my back by a team of experts, some of whom have not even met me but they are causing untold damage to my daughter’s wellbeing by pushing and pulling her in two directions instead of communicating properly directly with me. Then this action further divides the family and causes much damage.
This is all against what the Rt Hon Norman Lamb was saying at the Carers UK Conference and also Mr David Behan gave a wonderful speech and seemed extremely concerned when I spoke to him personally about my feelings. Both of them talked about changes for parents and carers to be included and not excluded and by bringing things out in the open maybe certain situations can be resolved. Nothing should be kept secret and it is wrong to have secret courts as the public have a right to know what is going on and where money is being wasted.
It was good to get up and speak in front of everyone and I was glad I did it – I feel I am speaking for many people who are too afraid yet are not happy. It is a bit like the Whistleblowers of the NHS well the same applies to private sector too as you can all see – It seems that the team are unclear on aspects of the law in my opinion. To think a team does not seem to know about my rights as the Nearest Relative – this is where investigations and information should be given to everyone from Social Services to the NHS and the private sector. It is not only the staff being bullied but carers and parents too if they dare to disagree with the team and I believe that such bullying is occurring at the top – senior level. I have been to several AGM of NHS trusts and I have enjoyed these dos as you get to meet the people who otherwise will not be available to speak on the telephone – are at never ending meetings and then you get an unsatisfactory response to your letter or else nothing at all. I intend to go back to some of these excellent dos and some have a party atmosphere. If they can organise this then they are capable or organising decent care – it is not literature that is needed but getting out there to speak to parents/carers groups and most important the patients face to face should be allowed to have their say and what about those like my daughter who have no say at all – that is why I am writing this blog as it is right that everything is investigated and changes made especially to the law.
I can tell you that you cannot go by awards of anything like this. There needs to be a proper rating system by the NHS and that should be based on what the patients say anonymously and also how carers like myself are being treated. If there are complaints that a carer is bring treated like a criminal and a patient not being listened to by anyone from doctor to social services then the whole system needs to be looked at.
Many organisations that are supposed to be independent are domineered by teams as I have seen and in addition to choice in psychiatrist there also needs to be choice in advocates and I am suspicious of those who are funded – certainly I cannot find anyone who would be my advocate or mediator – I even offered to pay Hafal and they could not accept this offer. Where is there an advocate for me that is truly independent? All I want is to ensure that my daughter is being treated fairly which I do not think she is but then I must patiently wait now for a meeting before the consultant psychiatrist gives permission. The team have to do what the consultant psychiatrist says and if the consultant psychiatrist says there is a risk or someone is not well enough then that person is denied contact by telephone, visits, leave etc etc. What when a consultant psychiatrist does not like you and refers to your past behaviour then someone like myself is in trouble that is for sure.
I appreciate I cannot jump to conclusions but I want everyone to know that Elizabeth has texted me in an excited way and telephoned me witnessed by other people to say she is looking forward to going to the Theme Park. I hope the psychiatrist does not turn around and say “the team have decided that she is not well enough” Well from the text messages I can prove it is what Elizabeth wants and have witnesses too.
It is very tiring to have to challenge and defend yourself when I have lots of other things to do. I need some notice to plan where to book for the nice weekend. I have asked 3 times for Cambian’s consent and I will not know until Tuesday and then I get a text from my daughter to say about the overnight stay – what on earth is their problem. Anyway I shall be able to share that view with everyone very shortly.
The good thing is that I have noticed their head office is in London and I also have looked up the names of those in charge – if no decision is given next week I shall pop down to their Head Office in person.
Very soon I shall be documenting the DSM 5. Diagnostic Statistical Manual and this is getting bigger every single year with more and more diagnoses and there is divided opinion. Well I have offered to speak myself at this conference. Of course I know that this is something that will be laughed upon when they get my request but I am the last person on earth these experts would ever wish to listen to. It is evident that they do not wish to listen to anyone but themselves so I await to hear from the organisers of this huge event. People in the UK may think that this DSM 5 does not apply to them but this is not true! I have proof of this in the form of interviews on a DVD.
At least at Carers UK, experts from many organisations from Ministers to Social Services/NHS were invited to speak and to join in – I believe that the DSM 5 Conference should be organised in the same way as Carers UK so that the experts can hear about the adverse effects of various treatments and see what they can do to help put things right for the victims of the pharmaceutical industry like my daughter.
I have visualised what care I want and have spoken to Mr Lamb and Mr Behan who both agree changes need to be made. Holistic care is the way forward with minimal amount of drugs given and therapeutic remedies as do not forget many people under the mental health have suffered abuse and they should not have been given the drugs in the first place like my daughter and for those who have been labelled, Dr Walsh may have the correct solution and a fresh look needs to be made regarding the research of Peter Bennett of Rehealth who proved that nutrition could play a major role in recovery of someone and this is the research that my daughter has agreed to take part in.
Dr Walsh is looking for volunteers as doctors and I would like to see as many as possible sign up for this training in November and I have handed the leaflet of Chy Sawel to both Mr Lamb and Mr Behan who should look into this care further as I am anxious to have this set up as soon as possible.
It is shocking that there is no decent alternative care centre in the whole of the UK – Now is the time for such change.