I need to update my above leaflet as even more drugs have since been prescribed for my daughter Elizabeth. Drugging is the main “care” of this country and there is no dignity in restraint by professionals and I see this at abuse and under a Section patients are forced in an abusive manner to take drugs when they do not even work in some cases. There is no regard for physical health and when I told one of the three consultant psychiatrists of the possible onset of Tardive Dyskinesia this psychiatrist wanted to give another drug. Elizabeth is now clearly suffering from physical health problems and instead of all these harmful drugs an appointment to see a Neurologist would be the best solution. To add to this list above of drugs are Senna, Bisoprolol and Lorazepam (as and when required). I have copied a picture of Elizabeth’s cat – better than all the drugs in the world. She has not taken Lorazepam since coming home which is highly addictive and neither has she had the Bisoprolol or the Senna – surely minimal drugs should be given not maximum. . When I looked up these drugs I was far from happy and when I telephoned I was told “we are not dealing with you Ms Bevis, Mr Bevis is next of kin” . Anyway I intend to write to the GP shortly as when I telephoned during the week it was not clear who the GP was and Elizabeth was down as being a “temporary” resident yet she has been home now for over two months and it is thanks to all my wonderful friends who have been helping me as I work full time. If it was not for them, Elizabeth probably would have been forced to go back despite not being on a section or a CTO. We have collected her possessions and Elizabeth has shown great happiness in being back home. We have been closely watched for the past months by the Home Treatment Team who report back to social services and everything no doubt gets recorded on their records – I know this for a fact.
Meanwhile I have been trying hard to help Elizabeth regain her confidence as she needs to get out more having been imprisoned for far too long. This weekend I have driven out in the countryside to a beautiful venue with outdoor swimming poor and I took her for a meal out. I have promised to get together some of my friends for a night out as it has been a long time since I have had a night out and now we are no longer restricted by visits from the Home Treatment Team where we had to be back by 6.30 – 7.00 pm.
I picked up the drugs on Saturday morning and waited for someone to come over to the MH foyer as per usual. The nurse from the Home Treatment team is one who is notorious for asking lots of questions of Elizabeth which do not have any relevance to the drugs and treatment. This person wanted to visit Elizabeth and I told him that on their records there should be a note to say Elizabeth spoke to someone during the week from their team and actually told them not to visit any more and this was witnessed by one of my “carers”. We also had someone call round but Elizabeth was out with her sister at the time. I then had to remind him that Elizabeth was not on a Section or a CTO and was entitled to a life that was the least restrictive. I told him the only thing that needed compliance was the blood test and that I needed to know when this is so that I could arrange for someone to bring her to the hospital. So long as she is taking this chemical Clozapine what more to the team want – she is complying with the drugs and hopefully eventually a review will be done as 100mg is the therapeutic dose and NOT 350mg. This could be the reason why Elizabeth is showing signs of Tardive Dyskinesia – definitely I have every reason to be concerned – just look at the level of drugs they have given her in the past and as she is walking I can see sharp reflex movements from her arms and even sometimes her mouth is showing some signs and these could be early signs and this is why I need her to see a leading expert.
Sometimes Elizabeth can have moments but not very often since being home when she suffers from anxiety – like this afternoon. today. In the morning she was fine and we went to the local gym – it is just a short walk from where I live and in a nice area. I hope that Elizabeth can go there herself in the not too distant future but right now she suffers a fear of going out places and refuses to go out alone and clings on to me when walking as she claims to feel dizzy. I actually told the Home Treatment team that the help I could do with is some young students to call from their team and I would pay for them to take my daughter out places – I doubt whether such help will ever be offered and I will have to try and find such care myself. I feel the best thing for Elizabeth is to be with suitable people of her own age, not with me and I am more than happy to pay myself as nothing is in place and she has proven her ability to mix well with my friends showing no sign of abnormal behaviour. I am now concerned following my phone call during the week that I do not know whether the GP has registered her like I thought they had – she is only down on record as being temporary to the area and has been here now for over two months.
Elizabeth is now registered at the local gym and has also expressed an interested in a new Yoga and Pilates studio also just up the road and I offered to take her there today. I have also applied for a cinema card and have spoken to Elizabeth about a course at college. She is happy to consider this as well and her sister is hoping to set up a business. Elizabeth has proven herself as being artistic and ultimately I would like to see her working and not doing nothing but I have noticed how mental health patients are not encouraged. ON a local ward patients were lying around and even whilst I waited for the drugs I overheard one patient talking about boredom and I felt worry for them as I have seen visiting Elizabeth on the wards there is nothing to do and should be just because it is the weekend there should be things going on and outings. It is not just a case of under funding as I have seen exactly where the money is being wasted and I was very sad to read that a cancer patient had been deprived drugs that were too expensive when just look at what they have given to Elizabeth and they should be looking the cheapest option and least drugs – money is also wasted on long and drawn out Tribunals and when a hospital is raking in a lot of money per week ie private sector there is no hurry to see someone go from their “care”. It must be a lot cheaper now Elizabeth is home and services also take a long time to arrange whereas it takes me minutes to arrange. I am pleased that Elizabeth is now speaking up more for herself as I am accused of doing this for her.
Last of all in my local area this weekend I noticed signs for a concert in a local park which I thought Elizabeth would enjoy. Elizabeth likes music but we do not share the same type of music but I was still prepared to take her. Sadly Elizabeth did not feel well enough to walk down to where the band was playing and wanted to return to the car immediately. In her own words …………….”I felt like I was lifting off the ground and felt dizzy” – how many times have I heard this from her and I have told the team and there are other signs of physical decline too and I am going to put everything in writing to the 3 consultant psychiatrists who are involved and through the GP Surgery all I want is this referral as I do not want matters to get any worse and before going on all these drugs Elizabeth was fine. Only as a child did she have physical illness in the form of severe Asthma, this led to an operation of strangulated hernia and the only time she has had skin problems is when she was put on Cipralex which led to self-harm and suicidal thoughts. Cipralex led to hospital admissions and a string of different labels including Aspergers but the team choose to ignore this and the diagnosis of PTSD which is backed by research. All of this has led me to read books and look at the drugs and effects caused by them and labelling which I think is extremely harmful – the labels may well be wrong and I have cases in my family – more than one where people are on top of the world so the label has proved to be inaccurate.
Despite the decline in Elizabeth’s physical health she is very happy to be at home and has said so many times and thanked me for taking her back. If only I as a mother had read the correct books sooner I would have had great understanding as to the real cause of some of these so called “symptoms” and long term hospital admissions to acute wards has done nothing for Elizabeth than destroy her confidence and it will take a lot of time before she is able to regain this confidence but I am positive this could be possible.
Last of all I wish to speak out about any cutbacks as there needs to be more funding towards the NHS as under the private sector where Elizabeth was sent miles from home she was not allowed out and I thought she would get the holistic care I had read about in Wales and this was not on offer there. So the care was the same but where was the patient involvement like I read about in Four Star Wards? I saw strict control there – I saw coercion – I saw influence by certain members of the team to distance herself from me and I have proof of all of this in writing.
So there should be patient input on the wards, there should be outings and hairdressers, aromatherapy, nutritionists and OPEN DIALOGUE. personal trainers and some classes like I wished to provide at the Bethlem when my visiting hours were cut to just 1 hour. Most importantly if family is excluded you cannot get a proper picture and if a member of staff or a consultant psychiatrist does not like you then they can write some terrible things about you and the rest of the team go by this instead of finding out for themselves. Where possible there should be inclusion with regard to families and any ideas from a family should not just be dismissed but discussed and listened to at least.
I am now going to look to see where the best care is being provided in some areas as in Finland – Open Dialogue.