Despite everything, it has not been the case that there has ever been a family “custody battle” as described in the files. The entire family came together for the sad occasion of a funeral for Irmgard, the Grandmother of Elizabeth and her sister. The drug Clozapine failed to destroy the emotion of Elizabeth on this sad occasion so I wondered what on earth does this chemical do! Elizabeth’s sister gave a tribute speech on the life of her Grandma. Afterwards, the entire family came back to the house along with close friends. It is sad to think that the Grandfather is now alone and disabled, some distance away from the rest of the family. Elizabeth’s sister is able to help during the week and go over there and I too have offered help with shopping although time is limited to weekends. It is sad Elizabeth cannot help as she would have been able to at one time. Elizabeth is too afraid to go out alone and since coming home and there is no help as regards this. As Dr Johnson correctly says it is about Truth Trust and Consent. I have tried to get her to walk up the road alone but she refuses. She is so terrified to go out she is choking/feeling ill and that also applies to when we take her out for meals. She has come out of the system disabled and to think at one time she was working, learning to drive and going to college. She would frequently get a bus over to her grandparents house but relies on someone to take her out. She says she feels dizzy as though she is about to fall over and I have read that is a side effect of the drug. I have tried to take her to classes at local gyms and have just joined a new class for zumba just down the road. It is sometimes a performance to get her out of the house, there are good days and bad. Elizabeth will mainly stand by the side of the wall and close to it. In order to help I have appointed a personal trainer who comes once a week now and someone who has been a very good friend lately has taken her out places as I am not around all the time during the week. Apart from this I rely on close friends and family to help me. It is now fifteen months since Elizabeth came home but despite her fears of going out places she is improving and eventually settles down. I could not do any of this if I did not work. The Court case ended without even her fares being offered and this goes to show how disabled people are treated in this Country.
One thing I can understand is that Elizabeth is terrified to see the consultant psychiatrist and does not wish to see anyone from social services. When you think that attempts were being made all along to section and force return her to care no wonder why she does not want to see certain team members. Anyway they have not taken an interest up to 15 months of her being home. On her own accord, Elizabeth had written a note to this effect and I understand from her sister that she cancelled a recent appointment as she did not wish to attend. We would not have known about these appointments that Elizabeth would in any case have to be taken too as letters were written directly to her and I only got to hear via her sister. Recently the words “it is not about you” have been said – the fact of the matter is if you as family are excluded and someone like Elizabeth cannot get out of the house alone, who is it about? I think it is wrong to exclude families and carers in some cases especially where help is needed. I think it is wrong to spend vast sums of money on court cases that end without any proper settlement when someone has been treated badly – but that is what things are like in the UK.
This week whilst I have been at home, I have been extremely busy. I have taken Elizabeth to see her GP as I wanted to discuss the private test results I have had done recently. We have also been to see our local MP and Elizabeth spoke to her – during this meeting I mentioned the reason why my neither my carers not Elizabeth wished to attend a clinic in a neighbouring Borough. Once a month Elizabeth has to go to blood tests in order to obtain the Clozapine and then my carers will collect the blood packs elsewhere . We have also been to Harley Street for an appointment referred to from local level for an MRI scan in an open scanner. Elizabeth also suffers from of claustrophobia but both services -one with an open scanner, the other a smaller one were run by private sector companies. This large open scanner was much better and although terrified, Elizabeth went under this and the tests have been done now. Next month we have the appointment with the Neurologist.
Recently, through the organisation ISPS, Elizabeth and I took part in a session of open diaglogue and we think this is brilliant and the correct way forward. Anyway Elizabeth and I have asked to be transferred to an area where there is Open Dialogue. There are some brilliant consultant psychiatrists and professionals who attend these events and despite and I like the way everything is open and honest. It is all about truth and trust but when Elizabeth and I have sat down together to read the shocking contents of the files it is difficult to trust people and it is not just me who has been written about in a bad way. I think one of the worse comments I have read has not even come from a doctor but from an art therapist who thinks he knows best by giving me a label of being mentally ill myself. I could quite easily contact this person if I wanted to, but I do not know if I can be bothered – if he wishes to think this then let him! If I was to speak to this person I would ask which diagnosis – after all there are so many of them to choose from in the DSM. I expect this “expert” would most certainly also think that drug treatment was the correct way forward and like I said, even with the most powerful of drugs such as Clozapine Elizabeth was still able to cry and show emotion at the funeral. I thought to myself what a waste of money! All these drugs that make people disabled and not everyone is happy to be on them. Having a diagnosis = having access to benefits. This is a most unfair system whilst no help given for anyone to be reduced or come off these drugs./ Whilst some can metabolise others cannot. Those who cannot metabolise can suffer adverse reactions and no proper testing is being done prior to prescribing. I am still waiting for the results from Holland but even the short email that has come back to me puts everything in question including the whole diagnosis (and there are 5 different ones) – words to the effect of not being able to metabolize certain anti-depressants. Prozac was the first drug given and to me that brings everything into question as this certainly had a shocking effect on Elizabeth. She became unrecognisable down to this drug.
I see there is a programme on mental health by Panorama next week. I shall try and watch this as I believe that it is the treatment that is wrong. Elizabeth now needs prompting to do regular essential tasks and could not manage by herself. In the scheme where she was sent after three years of incarceration she was expected to manage on £30 a week and it clearly says in the files she had no food and staff had to remind her of the importance of watching her spending. Well £30 a week is not much money but it is not impossible to budget however for someone who has been in hospital for so long it sounds completely inadequate that that person is expected to manage and then goes without food. It is essential that someone like Elizabeth on a powerful drug has the right diet. I thank God that I have the most brilliant support right now:
My house is looking more like a health shop. My adviser is an expert on nutrition has been educating the entire family on far more than nutrition but healthy lifestyle and I am more than happy to listen to this advice.
Elizabeth has been taken by my adviser to several health shows, a recent VeganFest, Chocolate shows, clinics where they have special treatments and saunas – infra red saunas. The Adviser has shown us some wonderful places such as Nutri Centre and China Life Tea.
I now only cook with Coconut oil and use only Himalyan rock salt.
Coconut oil can: Stave off infections, increase energy helping you burn more fat, can kill your hunger making you eat less without even trying, can improve blood cholesterol levels and may lower risk of heart disease.
The fatty acids in coconut oil can boost brain function in Alzheimers patients.
My adviser has told me about Bisphenol – a chemical used commercially in plastics and resins. So I try and use stainless steel and glass instead of plastic. BPA is not just in plastic but also in metal cans.
I also buy organic produce now too and if you shop around you can get reasonably good deals. I am now looking through a huge folder of information given which includes things like:
Mild Hyperbaric Oxygen Therapy is recommended.
Today Elizabeth has had Birch Tree Water and Vitamin D which is very important too. Elizabeth says this is really helping her.
I am also looking at the bread I buy and the sugar content and chemical additions to food and especially in diet drinks. I tend to buy gluten free.
Whilst Jamie Oliver focusses on sugar my advisor has gone much further with his expertise and I never thought about radiation levels in the house before but my adviser has come out shopping with us and gives instructions as to recipes for Elizabeth and has come round to cook. He is a very good cook too and tends to do vegan/vegetarian food which is a good thing.
Cooking oils are important. I have just thrown away some of the previously purchased oils and have and purchased healthy oils. A fridge test can determine whether olive oil is good quality or not. Leaving the oil in the fridge for a couple of days is sometimes enough to tell. Monounsaturated oils such as olive oil will solidify in side the fridge while polyunsaturated oils such as sunflower and safflower oil will not.
http://www.internationaloliveoil.org/estaticos/view/83-designations-and-definitions-of-olive-oils. This link is just one example I have been given.
I have also been advised to get some CherryActive.
There is so much information to take in and I am inviting my nutritional expert to meet other mothers who have sons/daughters incarcerated and they are good parents too yet many are unable to get their sons and daughters out of the rotten system. We will be meeting with Dr Shaw at the Bio Lab’s forthcoming conference next week. I am looking forward to meeting Dr Shaw again and seeing Sandra Breakspeare of Chy -Sawel – this is the kind of treatment MH patients should have – good nutrition, a proper assessment into whether they suffer from food allergies, proper tests to see if there are infections/endocrinal disorders and the best way forward as if someone is on these mind altering chemicals they cannot just come off them easily and this is why it is so important to have the correct diet and expert advice. I am very lucky to have found this and such advice could benefit hospitals and maybe Jamie Oliver should look into doing something to solve the problem of MH care via nutrition as this is now becoming such a major problem with shortage of beds – correct nutrition and diet could play an important role here. It is obvious that unhealthy diet contributes to the way someone can feel and all the more important that the diets of people under MH care are thoroughly looked at. It is unhealthy to provide microwave dinners on the wards and something needs to be done about this situation. Living in the community without proper support patients are left to go downhill and need help with nutrition especially if on maximum levels of mind altering chemicals. It is a pity doctors do not think about this rather than push huge levels of drugs, sometimes concomitantly prescribed to patients without any thought to their health and wellbeing. Why are these P450 tests not widely available? I have had to go to some lengths to get them done but also it is not all about finding the most suitable drug – these tests should be used to allow for patients to be on the minimal and not maximum doses and that can be done with the correct nutrition. So instead of sugar campaigns how about looking at everything and concentrating on schemes in the community to ensure patients are eating healthily and educated and encouraged to do so. Some patients may not feel well enough to cook a meal and they are left to live on takeaways. These drugs can render someone disabled to the point they have no energy or thinking ability. It is these patients that need help and assistance and not just left to go downhill to the point they are re-admitted into hospital. Diet/Nutrition is essential and investigations as regards food intolerance.
I have been invited to write an article for a magazine called Equilibrium and wish to do something jointly with my guest blogger. It is a case of finding the time to write though-f I am hoping to feature the results from Holland and to bring to the public’s attention that not everyone detained under the MH Act is violent and a danger to self or others and are detained for “convenience” – costing the public thousands per week. I would feature some real life cases. All this money could be better spent on improving nutrition and making this widely available and for those who are too ill to cook a meal because of the enormous quantities of drugs then more should be done to help within the community. The current system of forced drugging/ECT/restraint/CTOs is not working and it is not easy to get someone out of the system and I am proving that it can be done but that is thanks to the help and support I have had from friends/family, former patients – peer support is a good thing. These are people I can trust whereas some professionals like to write behind your backs in a nasty way. All the more reason to have Open Dialogue and centres like Chy Sawel set up. Elizabeth and I have requested to be transferred to an area where they have Open Dialogue. I will let you know how I get on with this in due course.