My daughter Elizabeth has been called a victim of the pharmaceutical industry by the private psychiatrist I appointed. The private psychiatrist was an Orthomolecular Psychiatrist, qualified to prescribe both the drugs and better treatment such as holistic care but the private psychiatrist who could only visit on a Saturday said quite honestly that at the time my daughter was in the wrong environment. I remember his visit well and I left him to talk to my daughter whilst I left to go into another room. I have never seen her so happy that finally here was someone who was taking into account more than just increasing or changing the drugs as they do in hospital. Yes he was right – this was the wrong environment but an attempt had been made before that was doomed to failure to reduce my daughter by 50mg. You just simply cannot just come off successfully in this way. The private psychiatrist looked at diet, nutrition and supplements as the mind altering drugs drain the body of nutrients and vitamins as I have seen from two lots of private tests I had carried out at the Bio Lab. Long term physical health of patients are not taken into account and the first psychiatrist to label and come up with a diagnosis told the family that Elizabeth would have to remain on the drugs for the rest of her life. This is simply not true – it can be done that someone is taken off the drugs however this needs to be done by professionals and it is not ideal for this to be done in the community. The shocking thing is that what they do not tell you is that immediately someone is taken off the drugs if they get diabetes and diabetes is something that the drugs can cause. If a withdrawal is done correctly, the most serious withdrawal symptoms can be avoided but to just reduce by 50mg in the community is not the correct way to go about things and of course failed. I would agree that my daughter is a victim of the pharmaceutical industry and nothing is being done to help these people and nothing is being done by the press to accurately report what is really going on.
The victims of the pharmaceutical industry like my daughter are termed as being “treatment resistant”. When drug after drug has failed after being used as a human guinea pig they are then as a last resort put on Clozapine which they say is a wonder drug! – far from it in fact and Elizabeth I know has suffered and is suffering still on this drug – strain to the heart, dizziness, tiredness and headaches. If a patient complains they are just ignored. It is easier to ignore a patient – who is going to take any notice unless of course they suddenly get diabetes then the professionals have to step in and do something – otherwise it is much easier to just ignore and carry on with the drugging especially if someone is in a hospital confined environment. Imagine what it must be like to be forced to take drugs for the rest of you life by professionals who have come up with several labels which I am questioning as a mother. If someone is a victim initially of abuse or rape for instance they may suffer a breakdown but I was amazed when no one seemed to care about the cause of depression rather than just labelling and drugging. This was care under the local area but once someone moves away from the local area things are very different.
From the research hospital Bethlem Royal Hospital SLAM patients are often transferred into private hospitals and when all else has failed because of lack of decent facilities, as a mother you think that the private sector has more to offer. There is no comparison to a private ward and outings and activities on offer as compared to an NHS ward for instance however, this is at a huge cost to the public and at the expense of other facilities within the NHS. Whether it be care on an acute ward or a private care that is still the same as far as drugging is concerned. The prescription from the Bethlem has not been changed since Elizabeth has been transferred to private sector care so I heard. At the Institute of Psychiatry after the debates had ended you could go and speak to people and someone there corrected me when I said it must be costing at least £1000 per week. Well I have been told it is much more than this and just imaging if someone is held under private sector care for several years.
Initially whilst under local care I became more and more unhappy that Elizabeth was being ignored by the team and was telling me of terrible side effects she was suffering on the drugs yet no one did anything and I remember taking the file to the Priory and asking them if they would take my daughter and I would pay for what I thought was fantastic care. The Priory told me that “it was too complicated a case”. I do not see what they mean by this at all – this is a simple case in my opinion and a case where a proper diagnosis needs to be given and treatment and that treatment should not just revolve around the drugs.
I do believe that an acute ward both NHS and private is not always the best place for someone to get better and certainly is not the place to safely be reduced off the drugs. Surely it would be more humane if something like this was to be done in a remote rural area away from cities and in a peaceful location with the involvement of professionals and peer support – people who truly understand and also it is kinder that a person is not just locked up but that someone is watching and supporting that person whilst they are going through crisis. The Root and Branch Project in Derbyshire have the solution and so do Chy Sawel who are looking at physical health in terms of diet/nutrition as the drugs drain the body of nutrients. I as a mother am all in favour of a holistic approach as nothing else has worked and I saw that my daughter was happy when someone listened to her. This is what my daughter has said to me “I am missing out on my life, Mum”. “I would like to work, I would like to do something with my life”. However as far as the Government is concerned they have no clue as to how someone feels or how someone is able to cope on a high proportion of drugs.
When Elizabeth was living in the community in the scheme I had time off work and visited her. I discovered a letter on the floor and Elizabeth was meant to see her social worker at a certain time. I noticed that the team left it for Elizabeth so that she did things on her own however my once immaculate daughter had difficulty in remember appointments and got to the stage where washing and simple chores mounted up but the idea was to allow this so that eventually she would have to step in and do something herself but when I backed out for a while and stopped helping her my point was proved, nothing was being done and her health and wellbeing was being jeopardised and on this occasion when I saw a letter with a time of the appointment I took her along in the car because I wanted to speak to the social worker as I heard she was trying to persuade my daughter to take Clozapine and she was not happy about this. All I have ever done is to speak up for my daughter but sometimes this can backfire on you – you can accused of interfering in the care for instance. Anyway if someone is not able to get to an appointment then how can they get themselves down to the job centre to fill in forms etc – if Elizabeth was dumped into a scheme like the last one this was meant for people who can do things for themselves and every case is different. The trouble is the Government do not take such things into account and no one can possibly understand how it feels to be on a high portion of drugs. Elizabeth has to lie down in the afternoons. Elizabeth has now lost all her confidence and suffers panic attacks like never before and the reason I am keen to see her out of hospital is I do not think it is the right place either public or private for her to get better. I do not care whether say a therapeutic community is public or private as long as the care is right and the price must surely be cheaper than being kept on an acute private hospital ward. The trouble is the NHS facilities if in a town or City may not be the right location but outside of a town/city the NHS could run a therapeutic community if given the funding in a rural location rather than in a hospital under an acute ward. However none of the therapeutic communities are offering what I would really like to see right now which only Chy Sawel/Root and Branch Project can offer. It is not a big house full of mentally ill patients I would like to see but smaller accommodation on a more individual basis with one to one peer support given at all times. There could be the involvement of companions which are lacking for so many who become isolated, education of those studying nursing, psychology or psychiatry and involvement of the wider community which I believe is the answer to end stigma rather than all these campaigns. After all it is education for the public to come and meet the patients like my daughter and be involved – only then they can see that was is portrayed in the press is wholly biased and sadly inaccurate in describing the majority of people affected by mental health problems.
I think it is wrong that the drugs companies do not take more responsibility and I will quote the following:
Joanna Moncrieff – presentation at Stuart Lowe Trust “De-mystifying Psychiatric Drugs:
A Drug Centred Approach: some drug-induced psychic effects:-
Euphoria; sedation: – different types; Emotional flattening; Relaxation; Stimulation; Psychedelic effects; Cognitive slowing and impairment; Reduced Emotional Sensitivity.
Unpleasant; Impotence and reduced libido; weight gain; diabetes, heart conduction defects; Tardive dyskinesia with mental impairment; reduced brain volume; mental impairment; death.
Antidepressants are not very different from placebo:
Meta-analyses show small differences on rating scales that are of doubtful clinical significance (kirsch et al, 2002; NICE 2004).
Differences easily accounted for by psychoactive effects of antidepressants.
Many other possible biases: publication bias, selective reporting, unblinding.
Do Antidepressants improve the outcome of depression:
Long term outcomes for treated depression – poor eg STAR*D study in which only 3% recovered and remained well (Leventhall & Antonuccio 2009, also Goldberg 1998, Tuma 2000; Ronalds 1997.
Some drugs help some people in some situations. There is no evidence that they do this by reversing an underlying imbalance or disease. They are prescribed to many people with little or no evidence that there will be any benefit. Drugs produce altered physical and mental states. The harmful consequences of treatment often outweigh any positive effects.
On this conclusive note I would like to add that my daughter Elizabeth is being given Contra Indicated drugs – I am looking further into this right now – I have been told that yet people are taken off the drugs in a hospital environment but all I saw at the Bethlem was drugs being pushed and at local level. I should imagine this is only done when someone has got diabetes instead of an early intervention into matters when a patient complains of serious side effects. Who cares – who is taking any notice and when I as a mother spoke up for my daughter just look how I was treated. The more drugged up the better in order to control and keep someone on a section by saying that person is a risk to themselves just because they need more support. How many are on such sections – how much is this costing the public especially when more and m ore are being referred to the private sector meaning that the patient is taken away miles away from home and family and kept for up to 3 years.
Here is an extract as regards the treatment under private care:
“I have discussed with h er the difficulties you are reporting with her not answering the phone however currenty she feels she does not want daily contact with yourself as she finds the conversations difficult and struggles to cope with this. She has consistently reported that she would prefer weekly contact preferably on a Monday evening after 6.00 pm and would like calls supervised by staff. Please note this is your daughter’s request”. “It is not true, Mum – I did not say this – I will call the police on them Mum – you are still my Mum”.
“I will help in any way I will, I have seen this pattern many times” “MHA rules can be easily usurped or manipulated.”
No wonder there are so many under section. No wonder the NHS A&Es are being shut down and maternity services. Whilst I have been critical about the psychiatric care it is simply that a ward should not be a place where someone remains for up to 2 years before being dumped back into society without enough support in place. I am critical because many professionals I have come across sum you up as a bad parent, label you yourself if you dare to challenge the care but the care is all wrong in both public and private sector and the treatment of mental health patients is disgusting.
“Its a travesty – I have been trying to change the system for 20 years” – more words said from an expert.
Well I as a mother would like matters changed right now. Things are at Crisis point with shortage of beds on acute wards and same patients were returning time and time again – if this was a war situation the Government would immediately step in and act so I do not accept that something cannot be done now.
I also think that a debate should be called at the IOP inviting as many patients and mothers who wish to see change as possible to discuss what should be done and then waste no time in organising this. A debate is of no use unless something is being done and it is action that needs to be given.
Another expert writes:
Clozapine is an antipsychotic medication requiring regular white blood cell and neutrophil counts. It carries warnings for agranulocytosis, seizures, hyperglycaemia, diabetes, myocarditis and other adverse cardiovascular and respiratory effects. It has numerous side effects including bowel infarction, seizures, hypersalivation, weight gain, constipation, bed-wetting, drooling, colon effects, drowsiness, vertigo, headache, tremor, poor sleep, nightmares, restlessness, agitation, confusion, fatigue, hallucinations, amnesia, paranoia, irritability and obsessive compulsive disorders. It has been associated with diabetes. Those receiving Clozapine should have their fasting blood glucose monitored. Research has indicated Clozapine may cause a deficiency of selenium.
Metformine: Usually prescribed for Type 2 Diabetes and may be used to treat polycystic ovaries and insulin resistance. I am not aware of any diagnoses of these conditions. Metformine does however affect blood sugar and thyroid function. It suppresses glucose production in the liver. Side effectsare gastrointestinal upset, diarrhoea, cramps, nausea, vomiting, flatulence, lactic acidosis. Metformine may antagonise glucagon to reduce fasting blood concentrations of cholesterol and triglycerides, metformine reduces LDL cholesterol and triglycerides.
This raises questions about diagnosis and treatment. I have drawn attention to the likelihood of underlying thyroid dysfunction and blood sugar condition.
I have got much more evidence you can be sure – I am looking into everything right now. It something is wrong it is not good enough for me as a mother that these facts are ignored by anyone and if any doctor disputes these facts I have more and more papers to prove everything.
Turning to Tescos and Asdas:
Tescos have written reiterating they have donated to MIND “I am sorry you remain unhappy with our decision to donate to MIND but this is our position at the current time.” It is not that I am unhappy but I just felt that what is really needed is not being provided and a proportion of any donations should be given to Chy Sawel so that they could set up the much needed centre to give proper assessments for the likes of my daughter with facilities to go in and enable the training of 20 doctors by Dr Walsh. They did say however they would refer my comments regarding donating to their Business Support Team. What is most lacking is accommodation and choice in care currently not available under either private or public sector in the correct location. For instance I would happily take my daughter to Finland to Tornio to get the right care.
Asdas responded in a more impressive way in my opinion. Asdas employ someone I am glad to hear who openly admitted he has had mental health problems. I was impressed by this that this person telephoned me to speak about my letter and said that whilst he could not authorise funding etc for Chy Sawel he would ensure that my comments were passed on. Well done to Asda.
Now I have had a letter from the Assistant of the President of the Family Division. I have submitted my comments already about the family courts but the letter just stated that he can only deal with cases that come before him in a judicial capacity. Well I as a mother am looking closely now at the whole picture and I am not satisfied. Even if my daughter is released from a section and who knows what will happen, if a CTO is enforced that agrees to the enforced drugging of my daughter on the current drugs at this level then I will have further complaints and my prime concern as the mother and Nearest Relative is for the long term health of my daughter. Long term health is a matter of risk – health and safety to the person concerned and I as a mother want this dealt with and if the law does not take this into account then it needs to be changed as the more people affected like my daughter the more strain to the NHS and its facilities if they have to deal with serious long term physical illness. I just want this acted upon and taken into serious consideration and not just ignored.